There once was a man named Abe whose job it was to roll big stones up a hill. He was pretty good at it, at least until the moment he suddenly wasn't.
That's where his story gets interesting.
You see, all his life, for as long as he could remember, Abe was told how good he was at pushing those boulders, and most everything else he did. Abe learned from a very young age that falling down was a sign of weakness and that he was not weak, so he should never need to fall down.
Once as a kid he saw another boy fall down, and, if you can believe this, the boy wasn't even pushing a rock when he fell. Abe stopped to look, but his teacher shooed him along.
"That kid fell," the teacher said. "But you're not the type of kid who falls down very often. When you grow up and get strong, you will learn never to fall at all." Abe was proud of himself, and happy not to be like the others. Falling down was painful and not very much fun.
As he grew up, Abe became better and better at never losing his balance. The few times he wobbled, his teachers told him that he must not be trying hard enough to stand tall. "You're not the kind of person who falls down unless you are careless. You are not the kind of person who falls down unless you are being lazy. If you only apply yourself, you'll never fall down at all."
Whenever Abe did fall, he always felt like it was his fault for not being more careful or for taking his eyes of the path.
Abe eventually grew up and fell into a job pushing rocks, which he thought he was pretty good at. He rarely fell, even when the climb was steep. Others had similar jobs along side him, and occasionally he would see them slip on the incline. Abe was thankful that wasn't him.
Despite his best efforts, Abe occasionally got overwhelmed and lost his footing on one of the hills. Whenever he did, he would throw himself behind the boulder he was pushing, and jump back up quickly so that nobody could see him on the ground. Abe thought that he was not the kind of person who fell down, after all, and he was afraid people would think less of him if they found out otherwise. Not falling was what Abe thought made him special.
So Abe had made a nice living, gathering modest acclaim as the guy who was one of the steadiest hands in town at pushing rocks up hills. He was unsure of the answers to many of the great questions of life, or to what use all those stones at the top of the hill would eventually be put, but he took comfort in knowing that he could usually get them up the hill seemingly with less effort than some of the other people in town.
Abe was glad not to be one of those people who fell down. They were bruised and dirty and scraped, some of them to the point that it looked like they might never fully heal. Abe was dry and clean, and he liked it that way.
Abe thought he was different.
Until he wasn't.
One day Abe was putting all his effort into hauling a large rock up a mountain. It was a tall mountain, but he had hauled rocks up it three times before, so Abe was sure he could do it again. But this time, as Abe got almost to the top, he lost his footing and rolled all the way down back to where he had started, and the boulder rolled over him a few times for good measure on the way down.
Abe was bruised and bloodied, but his first instinct was to look around and hope no one saw him fall. "This is so embarrassing," he thought. "I'm not the kind of person who falls down." He hoped no one would notice what happened, and sure enough, most people didn't.
Abe was shaken by his failure, but he kept showing up for work, pushing rocks, mostly up smaller hills. But soon Abe starting falling down all the time, and he didn't know why. He tried harder and harder to hide his falls, and his ever-increasing bruises. He tried as best he could to get his rocks up the hill without anyone noticing his newfound struggles, hoping his problems would only be temporary.
One day Abe went to the village to see a doctor to find out why he was falling and put a stop to it quickly. Instead of a solution, however, the doctor had somber news.
"You have a condition," she said, "that will cause you to fall down all the time. There is no way to fix it, and it will only get worse over time."
Abe was heartbroken. He had thought he was the kind of person who didn't fall down, but suddenly he was instead the kind of person who couldn't easily stand up. He had once thought he was good at pushing rocks uphill, but he had failed spectacularly to climb the last mountain he tried. His life suddenly seemed purposeless, and maybe even hopeless.
"I'm not the kind of person who never falls down, anymore." Abe thought. "And I never will be." Abe didn't know who he was anymore.
Abe went back to the hill the next day to push rocks as best he could. He wanted to just give it up, but he didn't know what else to do.
Abe fell down a lot. The first few times his instinct was to hop back on his feet, hide behind his rock and cover it up, but soon Abe realized there wasn't any point because he was going to fall back down again soon anyway. After one big fall, Abe looked around expecting to see people laughing at him, but he was surprised to see that most people were to busy struggling with their own rocks to really notice. And of the people who did notice, most of them shouted words of encouragement his way rather than scorn.
Abe felt a little embarrassed climbing the hill with so many falls, and he sure did pick up some bruises along the climb. But before he knew it, he had reached the top of the hill.
Abe went back down and grabbed another rock, and the process repeated. After he had pushed a few stones to the hilltop he looked over and saw some of the old stones that he had pushed up years earlier. Abe suddenly realized that his new rocks, the ones on which he had fallen a few times while pushing uphill, were just as high as the old ones that he pushed up easily long before.
"I guess it didn't really matter how many times I fell," Abe realized. "It only mattered where the rocks ended up."
Abe started falling more and more often, but wanted to prove he could still do his job, in part because he had gone to one of the best rock climbing schools and didn't have many other skills. But the memory of that giant mountain where he had crashed and burned once before haunted him. He knew he needed to push a rock up it just one time to prove to himself that he still could, and so that he wouldn't have to settle for shallow challenges from that point on.
He also knew that he was going to fall many times along the way, but he promised himself he would get up and keep inching forward as best he could.
Abe started up the hill in the dead of night because he was still afraid that people would laugh at him if they saw him fail. Abe fell constantly, more often than he ever had before. Some days he didn't even have the strength to get up immediately and had to lie there a while, holding the rock in place, until he could push again. But every time he fell, he told himself to get up again, because the joy of making it to the top--of proving that he still had something to contribute--would be worth the fight.
The climb seemed to take forever, and it only got steeper as Abe continued. Abe had grown weak and weary from the climb, so he used every bit of strength he could muster to give the stone one final shove. He pushed it and fell forward before he collapsed, thinking he had given it all he had but again fallen short.
Abe woke the next morning to a beautiful view of the valley floor beneath him. He had been to hills like this three times before, but never really stopped to look, so he was stunned and awe-struck when he stopped to appreciate the view. Abe smiled at the view, but he was ragged and ready to get back home, having given it his best shot but having again failed. He was disoriented from the climb, so he took a moment to gather himself, find his boulder and figure out which way led him back down.
But in that moment Abe realized that every path in sight led down the mountain, because he already had made it to the top, with his rock right beside him, sitting just a little bit higher than the three he had pushed up the mountain years before.
He made it to the summit even while falling down along the climb. He made it to the top, even while dirty and bruised. He made it to the end of the journey. And that's all that mattered.
Abe looked into the valley, and into the sky, and at his bruised and battered body, which might always bear scars reminding him of what he had just overcome. As he looked down on the hills he had climbed, Abe suddenly knew exactly who he was.
"I'm the kind of person that falls down sometimes," he realized. "And I'm the kind of person who gets back up again when I do.
"I'm the kind of person for whom things don't always come easily, and I have to work harder than I used to in order to get them.
"I'm the kind of person who got this boulder higher up the mountain than I could before, because this time I wasn't afraid of falling down.
"I'm the kind of person willing to fight through the pain and the failures for something that really matters.
"And that's so much more interesting and joyous kind of a person than the kind who never falls down."
Tuesday, December 5, 2017
Tuesday, November 14, 2017
Adventures in Customer Service
When my property tax bill came in the mail, I had no idea how much agony it would cause me. And absolutely none of it was financial.
I called my mortgage company to report the outstanding bill, but when I navigated the automated menu to the escrow option, the friendly recording told me that if I got a property tax bill mail, there was no need to report it because they would receive a copy automatically also. I went on about my life, a decision I would soon regret.
In early October a letter came in the mail from the Alameda County Property Tax Division, dated September 3rd but conveniently postmarked September 25th, informing me that my tax bill was overdue, and that additional late fees would be charged if the bill was not paid by September 30.
So I called my mortgage company, to yell at them, figure out what was going on, and most importantly, asked them why they had recently changed their name from Nationstar to "Mr. Cooper."
Was my mortgage company now a male human being instead of a corporate entity? Did Mitt Romney see the future when he famously said that "corporations are people" during the 2012 Presidential campaign, the same way he was right about Russia being our biggest international threat? And if my mortgage company is now called "Mr. Cooper," is Mr. Cooper literally made of money?
I had a lot of questions. But most went unanswered, as the call went something like this:
(automated voice): Welcome to Mr. Cooper! Please listen to the full menu before making a selection, as our menu options have recently changed. If you're a borrower, press "1." If you're a financial agency, press "2."
I press "1," wondering why I had to listen to the other option before committing to that choice. I'm then given the option of making a payment, or requesting the escrow department, property tax, or a few other things. I pick "property tax" and sit on hold for 10 minutes.
"Welcome to Mr. Cooper, this is John, how may I assist you?"
"I have a property tax bill that didn't get paid."
"Ok, let me get you over to the property tax division..." (puts me on hold, where I wait for five minutes).
Welcome to Mr. Cooper, this is Monique, how may I assist you?
"I have a property tax bill that didn't get paid and now I'm being charged a late fee. I need you to pay it, and cover the late fee. Also, why did I have to select "property tax at the last menu if I didn't get transferred to the property tax division?"
I'm not sure, but let me see about that tax bill. I don't show it in our records, but we'll put in an inquiry with your county and find out what's going on in 5-7 business days.
"You can look at the online property records and see right now the amount that's unpaid."
Sorry, but we need an official statement. Then if there's something due we'll pay it in 5-7 days, along with any late fees.
"Fine," I say, and go about my life. Nine days later I checked again and the bill still showed online as being due, so I call back, press the button to be transferred to the property tax division, and am once again transferred somewhere else, which I only discover after a significant time on hold. When I eventually get someone on the line, I can quickly tell that she has a room temperature IQ and will not be the answer to my problems.
She claims to have no record of my prior call or any unpaid tax bill, but informs me that if I want them to pay my tax bill, I need to send them the bill and put my request in writing,.
"But the entire reason I have an escrow is for you to pay my tax bills!"
"Yeah, but this is your first tax bill since you've owned the property, so a lot of people want to pay that one out of pocket."
"Why didn't you tell me that you wouldn't pay it? You're automated message said you would handle it."
"Well, we don't unless you tell us to."
"Then why did someone tell me last week they would pay it? I spent half an hour on that phone call. But whatever, just pay it, please."
"You'll need to send us request in writing."
"Do you have an email address?"
Our fax number is... (she rattles off some numbers at a lightning pace).
"But is there an email address?"
Yeah, (at an equally rapid pace she) it's payment.proof@corelogic.paymentservices_billpay.tx/incompetence.net (I might have made up one small portion of this address. The address might have been .te instead of .tx)
"Ok."
Now before you go, can I ask if I've provided you with excellent customer service?
"No, you might a lovely person, but it's been like pulling teeth to get a tax bill paid, when that's the only reason I have an escrow account in the first place."
I send the request, along with the bill, and get an email back 5 days later saying I will receive a response to my request in 5-7 days. I hear nothing back, but the next week I see that money was taken out of my escrow on October 19, so I figure I'm in the clear.
On October 30, I check the online tax records to see that my taxes are still unpaid and that another late fee is coming November 1. I call Mr. Cooper. The automated system hangs up on me. I call back and the automated system tells me there's an extended wait time, so I call Alameda County instead, where the automated system hangs up on me. I give up.
I check back on November 6, and the Alameda County website says I now owe and even larger tax bill. I give my old friend Mr. Cooper another call, once again my request to speak to the tax division is routed to another division, again after a lengthy hold.
Welcome to Mr. Cooper, this is John, how may I help you?
"I have a property tax bill that you I've asked you three times to pay but still is listed as unpaid."
Ok, let me get you to the tax division...
"Wait, John. Are you John Cooper?"
No, Mr. Cooper is just our company name.
"Well, can I speak to Mr. Cooper? I have an issue with his customer service."
...(he transfers me over to the tax division instead)
Welcome to Mr. Cooper, how may I help you?
"I have an unpaid property tax bill that I've asked you to pay three times. Money came out of my escrow three weeks ago, but it still is listed as unpaid, so I'm trying to see what is going on."
Did you send us the bill?
"Yes, on October 12."
Ok, but I don't see it.
"Well, $1700 was taken out of my escrow account three weeks ago."
Oh, was that for a property tax bill?
"Yes, but the county hasn't received it, so can you tell me if it was sent and if it cleared the bank?"
Ok, let me work on that while I place you on a brief hold
(5 minutes of holding)
Mr. Smith? I haven't been able to track that payment yet, but I'm working on it.
(3 minutes of holding)
Ok, I have a tracking number. It's 588234765298777333.
"But what is that, and how is it supposed to help me?"
Now you can track the payment!
"Is that your internal check number, or a the number assigned by a delivery service?"
That's the Fed Ex number.
"Has the Fed Ex been received?"
Let me check on that...
(5 minute hold)
Yes, the Fed Ex was received October 30.
"Has the check been deposited?"
Let me check on that...
(5 minute hold)
Sir, we don't have any way of telling that.
"Can't you tell if the check has cleared the bank?"
What do you mean?
"When I write a check, I can view my account online and see when money has been taken out of my account as a result of the check. Surely you can do the same thing. You're a bank, for godsakes!"
Oh, well I don't have access to any of those records.
"Do you at least have a check number I can reference?"
No, I don't have any record of that either?
"Why on earth don't you record your own transactions? Can't you go look at a bank record and tell when company money has been withdrawn? It seems like a really easy thing to track. (awkward pause, while I resign myself to the reality that the person on the phone is not going to give me any useful information. Sigh.) You know, I will just call my county office and see if they can help me, and if not you will be hearing from me again."
Ok, but before you go can I ask if I've provided you with excellent customer service?
"I have no problem with you personally. You seem very nice. But no. It's ridiculous that I keep better records of financial transactions than my mortgage company does. So this entire month-long process of a customer service experience where I've written a letter and made four phone calls in a futile attempt to have my escrow company to do the one and only thing that it is was designed to do has been ludicrously and unnecessarily painful."
Well thank you for calling Mr. Cooper!
I hung up the phone and then called Alameda County, which I'm pretty sure hung up on me again. But I called again, and (after a long hold) the agent to whom I spoke said they had received the payment on October 31, and the online records just hadn't updated yet.
"So, I'm in the clear?," I asked?
"Yes," she said. "At least until your next payment, which is due next month."
I called my mortgage company to report the outstanding bill, but when I navigated the automated menu to the escrow option, the friendly recording told me that if I got a property tax bill mail, there was no need to report it because they would receive a copy automatically also. I went on about my life, a decision I would soon regret.
In early October a letter came in the mail from the Alameda County Property Tax Division, dated September 3rd but conveniently postmarked September 25th, informing me that my tax bill was overdue, and that additional late fees would be charged if the bill was not paid by September 30.
So I called my mortgage company, to yell at them, figure out what was going on, and most importantly, asked them why they had recently changed their name from Nationstar to "Mr. Cooper."
Was my mortgage company now a male human being instead of a corporate entity? Did Mitt Romney see the future when he famously said that "corporations are people" during the 2012 Presidential campaign, the same way he was right about Russia being our biggest international threat? And if my mortgage company is now called "Mr. Cooper," is Mr. Cooper literally made of money?
I had a lot of questions. But most went unanswered, as the call went something like this:
(automated voice): Welcome to Mr. Cooper! Please listen to the full menu before making a selection, as our menu options have recently changed. If you're a borrower, press "1." If you're a financial agency, press "2."
I press "1," wondering why I had to listen to the other option before committing to that choice. I'm then given the option of making a payment, or requesting the escrow department, property tax, or a few other things. I pick "property tax" and sit on hold for 10 minutes.
"Welcome to Mr. Cooper, this is John, how may I assist you?"
"I have a property tax bill that didn't get paid."
"Ok, let me get you over to the property tax division..." (puts me on hold, where I wait for five minutes).
Welcome to Mr. Cooper, this is Monique, how may I assist you?
"I have a property tax bill that didn't get paid and now I'm being charged a late fee. I need you to pay it, and cover the late fee. Also, why did I have to select "property tax at the last menu if I didn't get transferred to the property tax division?"
I'm not sure, but let me see about that tax bill. I don't show it in our records, but we'll put in an inquiry with your county and find out what's going on in 5-7 business days.
"You can look at the online property records and see right now the amount that's unpaid."
Sorry, but we need an official statement. Then if there's something due we'll pay it in 5-7 days, along with any late fees.
"Fine," I say, and go about my life. Nine days later I checked again and the bill still showed online as being due, so I call back, press the button to be transferred to the property tax division, and am once again transferred somewhere else, which I only discover after a significant time on hold. When I eventually get someone on the line, I can quickly tell that she has a room temperature IQ and will not be the answer to my problems.
She claims to have no record of my prior call or any unpaid tax bill, but informs me that if I want them to pay my tax bill, I need to send them the bill and put my request in writing,.
"But the entire reason I have an escrow is for you to pay my tax bills!"
"Yeah, but this is your first tax bill since you've owned the property, so a lot of people want to pay that one out of pocket."
"Why didn't you tell me that you wouldn't pay it? You're automated message said you would handle it."
"Well, we don't unless you tell us to."
"Then why did someone tell me last week they would pay it? I spent half an hour on that phone call. But whatever, just pay it, please."
"You'll need to send us request in writing."
"Do you have an email address?"
Our fax number is... (she rattles off some numbers at a lightning pace).
"But is there an email address?"
Yeah, (at an equally rapid pace she) it's payment.proof@corelogic.paymentservices_billpay.tx/incompetence.net (I might have made up one small portion of this address. The address might have been .te instead of .tx)
"Ok."
Now before you go, can I ask if I've provided you with excellent customer service?
"No, you might a lovely person, but it's been like pulling teeth to get a tax bill paid, when that's the only reason I have an escrow account in the first place."
I send the request, along with the bill, and get an email back 5 days later saying I will receive a response to my request in 5-7 days. I hear nothing back, but the next week I see that money was taken out of my escrow on October 19, so I figure I'm in the clear.
On October 30, I check the online tax records to see that my taxes are still unpaid and that another late fee is coming November 1. I call Mr. Cooper. The automated system hangs up on me. I call back and the automated system tells me there's an extended wait time, so I call Alameda County instead, where the automated system hangs up on me. I give up.
I check back on November 6, and the Alameda County website says I now owe and even larger tax bill. I give my old friend Mr. Cooper another call, once again my request to speak to the tax division is routed to another division, again after a lengthy hold.
Welcome to Mr. Cooper, this is John, how may I help you?
"I have a property tax bill that you I've asked you three times to pay but still is listed as unpaid."
Ok, let me get you to the tax division...
"Wait, John. Are you John Cooper?"
No, Mr. Cooper is just our company name.
"Well, can I speak to Mr. Cooper? I have an issue with his customer service."
...(he transfers me over to the tax division instead)
Welcome to Mr. Cooper, how may I help you?
"I have an unpaid property tax bill that I've asked you to pay three times. Money came out of my escrow three weeks ago, but it still is listed as unpaid, so I'm trying to see what is going on."
Did you send us the bill?
"Yes, on October 12."
Ok, but I don't see it.
"Well, $1700 was taken out of my escrow account three weeks ago."
Oh, was that for a property tax bill?
"Yes, but the county hasn't received it, so can you tell me if it was sent and if it cleared the bank?"
Ok, let me work on that while I place you on a brief hold
(5 minutes of holding)
Mr. Smith? I haven't been able to track that payment yet, but I'm working on it.
(3 minutes of holding)
Ok, I have a tracking number. It's 588234765298777333.
"But what is that, and how is it supposed to help me?"
Now you can track the payment!
"Is that your internal check number, or a the number assigned by a delivery service?"
That's the Fed Ex number.
"Has the Fed Ex been received?"
Let me check on that...
(5 minute hold)
Yes, the Fed Ex was received October 30.
"Has the check been deposited?"
Let me check on that...
(5 minute hold)
Sir, we don't have any way of telling that.
"Can't you tell if the check has cleared the bank?"
What do you mean?
"When I write a check, I can view my account online and see when money has been taken out of my account as a result of the check. Surely you can do the same thing. You're a bank, for godsakes!"
Oh, well I don't have access to any of those records.
"Do you at least have a check number I can reference?"
No, I don't have any record of that either?
"Why on earth don't you record your own transactions? Can't you go look at a bank record and tell when company money has been withdrawn? It seems like a really easy thing to track. (awkward pause, while I resign myself to the reality that the person on the phone is not going to give me any useful information. Sigh.) You know, I will just call my county office and see if they can help me, and if not you will be hearing from me again."
Ok, but before you go can I ask if I've provided you with excellent customer service?
"I have no problem with you personally. You seem very nice. But no. It's ridiculous that I keep better records of financial transactions than my mortgage company does. So this entire month-long process of a customer service experience where I've written a letter and made four phone calls in a futile attempt to have my escrow company to do the one and only thing that it is was designed to do has been ludicrously and unnecessarily painful."
Well thank you for calling Mr. Cooper!
I hung up the phone and then called Alameda County, which I'm pretty sure hung up on me again. But I called again, and (after a long hold) the agent to whom I spoke said they had received the payment on October 31, and the online records just hadn't updated yet.
"So, I'm in the clear?," I asked?
"Yes," she said. "At least until your next payment, which is due next month."
Friday, October 27, 2017
Wake Me Up When November Ends
Here comes the rain again
falling from the stars
Drenched in my pain again
becoming who we are.
As my memory fades
but never forgets what I've lost
Wake me up
when September ends.
-Green Day
The good news is that today is the end of the hardest five month stretch of my life. The bad news? Things don't seem likely to get that much better, at least for a little while.
If my life were a book (and I'm working on that!), I'd be somewhere in the middle at a point where the plot starts to drag and you want to skip ahead to the end where something exciting happens.
I sure know I do.
It was exactly five months ago when I broke my kneecap by falling on an uneven Portland sidewalk while jogging back to my hotel. The fall ripped my jeans, but it didn't hurt that badly so at the time I was relatively sure it wasn't that serious.
The next morning I strolled through the Portland Airport without issue, thankful I had escaped without major injury. By the time I got home, it was aching a little. The day after that, it was on fire.
I thought about going to the doctor, but I had a million things to finish up at work because I had a trip to Japan planned the next day. Also, I had a trip to Japan the next day.
I didn't have time to both go to the doctor and pack for the trip, so packing won. I thought about cancelling, but I knew my swelling would be too bad to get an MRI yet anyway, and for all I knew the knee would be fine in a couple of days.
It turns out that it wasn't.
It became clear soon after landing on the other side of the world that I was in trouble. But this was a once-in-lifetime trip, so I bought the first cane I saw (it immediately became the most expensive piece of my wardrobe) and tried to keep going, armed with the lesson that it is surprisingly hard to mime one's need for a cane to a Japanese store salesperson if you can't speak the native language.
I did the best I could for a week, coming back to my sister's apartment every night and lying on the floor with my leg in the air in the hopes that the swelling in my leg would recede enough to distinguish my ankle from the swelling. I saw some beautiful things while there, but the beauty and the pain will forever be intertwined in my mind.
Which is kind of how life works, if you think about it. I haven't been able to do much the last five months, so I certainly have.
I got back home a week later and went to the ER, where the young doctor who looked overwhelmed told me the X-ray didn't show a break, so it was likely just a bruise that would heal within a week. I reminded him it had already been 10 days since my fall, so his diagnosis didn't seem to match the evidence.
He told me to see a specialist.
The specialist told me I had a microscopic fracture that would take 6-8 weeks to heal. And then a few days later I went back to the ER, because I contracted some weird Japanese death virus requiring stronger pain medication to survive than did the broken knee.
Things got worse from there last summer.
I saw a veterinarian who told me my cat was dying. I saw my dentist because I developed a weird ulcer in my mouth in a spot where I'd had an invasive surgery 14 years ago. My eye specialist told me my vision would never fully come back in my left eye, and that I had yet another issue to keep an eye on (see what I did there?) in my right. And then I saw my boss, who told me that I would need to work the equivalent of three jobs because yet another attorney had left our team, and we can't replenish our workforce, even with lateral transfers, due to the idiotic federal hiring freeze.
I counted down every day of those 6-8 weeks, but when they passed I wasn't much better.
One physical therapist told me that this is just how life is going to be for me from now on because I have multiple sclerosis. I told him he was nuts and found a new physical therapist.
I spent the summer on crutches, occasionally my fancy Japanese cane, and for a glorious few stretches of days when the planets aligned just so, I felt well enough to get by with just a knee brace. But then I would walk one aisle too many in the grocery store and I'd be on crutches again for a week.
After he three cancelled appointments, I finally got a follow-up visit with my doctor, who recommended another MRI to see why I wasn't healing. It turns out my fracture was worse than initially thought, and those 6 weeks of recovery turned into six months, which I suppose was better than forever. And I'm now five months in, and hoping that the goalposts don't move again this time next month.
It still feels like I lost the summer this year, and most of the fall. You miss out on so much when you can't walk, I'm learning, especially when the disability is supposedly too temporary to invest in major life accommodations.
I spent all summer and fall wondering if there was some Cosmic lesson I was supposed to learn through my inexplicably extended recovery. I wondered if maybe my healing wouldn't come until I learned some lesson through the suffering, like the main character in Crime and Punishment (speaking of books that drag in the middle).
My pastor told me that wasn't how life worked, and I think he's probably right. Hard times don't magically go away upon the discovery of a brilliant insight or a magic genie. You just have to keep doing the best you can, through almost imperceptible progress that always doesn't flow in a straight line, until slowly things start to get better. Maybe a good book or supportive friend will breathe life into a few moments along the way.
Sometimes the only lesson in a long struggle is to get up and keep struggling.
And this week, the first signs of progress are showing. I did my first five-minute session on the elliptical machine this week, which I was excited about at first. Then I realized that if I continue to progress at my current pace (one minute of exercise per month of recovery) it's going to be two-and-a-half years before I can go half an hour.
I was hoping that I would be able to run again by my 40th birthday next week, but it's clear now that's not going to happen. If the timeline holds, maybe I'll be ready around Thanksgiving, which might make for the best one yet, but my doctor has been wrong before.
In the hopes that he's right this time, I'm counting down until the end of November. If life works out how I want it to, then by then I'll be running again, training to set another personal record at my hometown half marathon. If life goes how I hope, I won't have to strategize to reduce my number of trips to the office printer, and I can make social plans based on what sounds fun instead of what has nearby parking and a place to sit. If things work out, I will have even snuck away to Lake Tahoe for a few days around my birthday to regroup and I can find parking close enough to see that crystal blue calm in the water that I keep hearing about, this time firsthand.
If my hopes are met, I'll soon pick right back up where I left off in late May, and I'll hit December running, literally.
But until then, if I've learned anything by limping through the last five months, it's that sometimes the only way to get through something tough, is just to lower your head and walk through it.
Even if you need a fancy Japanese cane to do so.
I really hope I won't have to use mine again. But I mostly hope November goes by quickly.
Wake me up when it ends.
falling from the stars
Drenched in my pain again
becoming who we are.
As my memory fades
but never forgets what I've lost
Wake me up
when September ends.
-Green Day
The good news is that today is the end of the hardest five month stretch of my life. The bad news? Things don't seem likely to get that much better, at least for a little while.
If my life were a book (and I'm working on that!), I'd be somewhere in the middle at a point where the plot starts to drag and you want to skip ahead to the end where something exciting happens.
I sure know I do.
It was exactly five months ago when I broke my kneecap by falling on an uneven Portland sidewalk while jogging back to my hotel. The fall ripped my jeans, but it didn't hurt that badly so at the time I was relatively sure it wasn't that serious.
The next morning I strolled through the Portland Airport without issue, thankful I had escaped without major injury. By the time I got home, it was aching a little. The day after that, it was on fire.
I thought about going to the doctor, but I had a million things to finish up at work because I had a trip to Japan planned the next day. Also, I had a trip to Japan the next day.
I didn't have time to both go to the doctor and pack for the trip, so packing won. I thought about cancelling, but I knew my swelling would be too bad to get an MRI yet anyway, and for all I knew the knee would be fine in a couple of days.
It turns out that it wasn't.
It became clear soon after landing on the other side of the world that I was in trouble. But this was a once-in-lifetime trip, so I bought the first cane I saw (it immediately became the most expensive piece of my wardrobe) and tried to keep going, armed with the lesson that it is surprisingly hard to mime one's need for a cane to a Japanese store salesperson if you can't speak the native language.
I did the best I could for a week, coming back to my sister's apartment every night and lying on the floor with my leg in the air in the hopes that the swelling in my leg would recede enough to distinguish my ankle from the swelling. I saw some beautiful things while there, but the beauty and the pain will forever be intertwined in my mind.
Which is kind of how life works, if you think about it. I haven't been able to do much the last five months, so I certainly have.
I got back home a week later and went to the ER, where the young doctor who looked overwhelmed told me the X-ray didn't show a break, so it was likely just a bruise that would heal within a week. I reminded him it had already been 10 days since my fall, so his diagnosis didn't seem to match the evidence.
He told me to see a specialist.
The specialist told me I had a microscopic fracture that would take 6-8 weeks to heal. And then a few days later I went back to the ER, because I contracted some weird Japanese death virus requiring stronger pain medication to survive than did the broken knee.
Things got worse from there last summer.
I saw a veterinarian who told me my cat was dying. I saw my dentist because I developed a weird ulcer in my mouth in a spot where I'd had an invasive surgery 14 years ago. My eye specialist told me my vision would never fully come back in my left eye, and that I had yet another issue to keep an eye on (see what I did there?) in my right. And then I saw my boss, who told me that I would need to work the equivalent of three jobs because yet another attorney had left our team, and we can't replenish our workforce, even with lateral transfers, due to the idiotic federal hiring freeze.
I counted down every day of those 6-8 weeks, but when they passed I wasn't much better.
One physical therapist told me that this is just how life is going to be for me from now on because I have multiple sclerosis. I told him he was nuts and found a new physical therapist.
I spent the summer on crutches, occasionally my fancy Japanese cane, and for a glorious few stretches of days when the planets aligned just so, I felt well enough to get by with just a knee brace. But then I would walk one aisle too many in the grocery store and I'd be on crutches again for a week.
After he three cancelled appointments, I finally got a follow-up visit with my doctor, who recommended another MRI to see why I wasn't healing. It turns out my fracture was worse than initially thought, and those 6 weeks of recovery turned into six months, which I suppose was better than forever. And I'm now five months in, and hoping that the goalposts don't move again this time next month.
It still feels like I lost the summer this year, and most of the fall. You miss out on so much when you can't walk, I'm learning, especially when the disability is supposedly too temporary to invest in major life accommodations.
I spent all summer and fall wondering if there was some Cosmic lesson I was supposed to learn through my inexplicably extended recovery. I wondered if maybe my healing wouldn't come until I learned some lesson through the suffering, like the main character in Crime and Punishment (speaking of books that drag in the middle).
My pastor told me that wasn't how life worked, and I think he's probably right. Hard times don't magically go away upon the discovery of a brilliant insight or a magic genie. You just have to keep doing the best you can, through almost imperceptible progress that always doesn't flow in a straight line, until slowly things start to get better. Maybe a good book or supportive friend will breathe life into a few moments along the way.
Sometimes the only lesson in a long struggle is to get up and keep struggling.
And this week, the first signs of progress are showing. I did my first five-minute session on the elliptical machine this week, which I was excited about at first. Then I realized that if I continue to progress at my current pace (one minute of exercise per month of recovery) it's going to be two-and-a-half years before I can go half an hour.
I was hoping that I would be able to run again by my 40th birthday next week, but it's clear now that's not going to happen. If the timeline holds, maybe I'll be ready around Thanksgiving, which might make for the best one yet, but my doctor has been wrong before.
In the hopes that he's right this time, I'm counting down until the end of November. If life works out how I want it to, then by then I'll be running again, training to set another personal record at my hometown half marathon. If life goes how I hope, I won't have to strategize to reduce my number of trips to the office printer, and I can make social plans based on what sounds fun instead of what has nearby parking and a place to sit. If things work out, I will have even snuck away to Lake Tahoe for a few days around my birthday to regroup and I can find parking close enough to see that crystal blue calm in the water that I keep hearing about, this time firsthand.
If my hopes are met, I'll soon pick right back up where I left off in late May, and I'll hit December running, literally.
But until then, if I've learned anything by limping through the last five months, it's that sometimes the only way to get through something tough, is just to lower your head and walk through it.
Even if you need a fancy Japanese cane to do so.
I really hope I won't have to use mine again. But I mostly hope November goes by quickly.
Wake me up when it ends.
Tuesday, September 26, 2017
Mother Nature's Midlife Crisis
Mother Nature is having a midlife crisis and it isn't pretty. She's acting like she caught her husband (Father Time?) in the bed with the girl next door and now wants to burn down the whole neighborhood, before driving away in a new corvette that isn't even electric.
That sounds silly, and maybe even disrespectful to the people suffering through tragedy right now, but I don't have the words to come close to explaining what's been happening otherwise.
Think about it: Florida and Texas got pummeled. Wildfires blaze across California. Earthquakes keep shaking Mexico. The Caribbean got slammed by a hurricane so badly that some islands aren't even inhabitable anymore. And then it got hit again.
Puerto Rico looks to be basically underwater.
It's almost as though Mother Nature is in a contest with Donald Trump to see who can inflict the most harm on brown people.
And I don't understand why she's so angry.
If Father Time cheated on her, she should take it out on him instead of us. She should know that we've all been cheated by him too at some point.
If Mother Nature is bored with her life and needs some excitement, couldn't she just go on a cross-country road trip like Thelma and Louise instead of using the wind to hurl our cars through the air?
Maybe she's mad at us for some reason--perhaps she thinks we forgot her birthday. Or her Earth Day. Maybe she thinks we didn't thank her enough for that one nice day we had this summer. Or perhaps we didn't take out the trash like we promised, and now it's all piled up in somewhere in New Jersey.
Perhaps it's that we had an anniversary and forget to give her flowers? Well, maybe, but you'd think she'd be perfectly capable of coming up with plenty of her own.
Some people will say it's because of global warming, but I'm not so sure. If Mother Nature were too hot it sure seems like she would be keeping all the water to herself instead of spraying it all over us. (Editor's Note: Some people will also say that I shouldn't joke about global warming or make fun of the President. And I will tell some people to get their own blog and they can write whatever they want).
Whatever the reason, and she won't come out and tell us, it's been the worst run of weather I can remember for North America while we are stuck here trying to figure it out. Here in Northern California the highs seemed to hover somewhere between 107 and 5000 for most of the summer. Once it gets that hot you really can't tell the difference.
The weather was hard on me this summer too. Multiple sclerosis causes my left eye to go blind when I get overheated. On the day it got to 113, I don't know why I even bothered putting in my contacts.
But those of us who are safe, sheltered, and dry really can't complain, I suppose, since so many people are going through so much hurt right now. If anyone knows how to get back into Mother Nature's good graces, it would be a public service to all. I would offer bake her a fruitcake, but too much heating up the oven might be exactly what got her riled up in the first place.
Until we figure out how to make amends, all we can do is give generously to the relief organizations, look for ways to serve to make the lives of those affected a little bit better, and maybe say some prayers to the guy who was documented to have calmed the storms back in Matthew.
Because with Mother Nature in this mood, He might be our only hope.
That sounds silly, and maybe even disrespectful to the people suffering through tragedy right now, but I don't have the words to come close to explaining what's been happening otherwise.
Think about it: Florida and Texas got pummeled. Wildfires blaze across California. Earthquakes keep shaking Mexico. The Caribbean got slammed by a hurricane so badly that some islands aren't even inhabitable anymore. And then it got hit again.
Puerto Rico looks to be basically underwater.
It's almost as though Mother Nature is in a contest with Donald Trump to see who can inflict the most harm on brown people.
And I don't understand why she's so angry.
If Father Time cheated on her, she should take it out on him instead of us. She should know that we've all been cheated by him too at some point.
If Mother Nature is bored with her life and needs some excitement, couldn't she just go on a cross-country road trip like Thelma and Louise instead of using the wind to hurl our cars through the air?
Maybe she's mad at us for some reason--perhaps she thinks we forgot her birthday. Or her Earth Day. Maybe she thinks we didn't thank her enough for that one nice day we had this summer. Or perhaps we didn't take out the trash like we promised, and now it's all piled up in somewhere in New Jersey.
Perhaps it's that we had an anniversary and forget to give her flowers? Well, maybe, but you'd think she'd be perfectly capable of coming up with plenty of her own.
Some people will say it's because of global warming, but I'm not so sure. If Mother Nature were too hot it sure seems like she would be keeping all the water to herself instead of spraying it all over us. (Editor's Note: Some people will also say that I shouldn't joke about global warming or make fun of the President. And I will tell some people to get their own blog and they can write whatever they want).
Whatever the reason, and she won't come out and tell us, it's been the worst run of weather I can remember for North America while we are stuck here trying to figure it out. Here in Northern California the highs seemed to hover somewhere between 107 and 5000 for most of the summer. Once it gets that hot you really can't tell the difference.
The weather was hard on me this summer too. Multiple sclerosis causes my left eye to go blind when I get overheated. On the day it got to 113, I don't know why I even bothered putting in my contacts.
But those of us who are safe, sheltered, and dry really can't complain, I suppose, since so many people are going through so much hurt right now. If anyone knows how to get back into Mother Nature's good graces, it would be a public service to all. I would offer bake her a fruitcake, but too much heating up the oven might be exactly what got her riled up in the first place.
Until we figure out how to make amends, all we can do is give generously to the relief organizations, look for ways to serve to make the lives of those affected a little bit better, and maybe say some prayers to the guy who was documented to have calmed the storms back in Matthew.
Because with Mother Nature in this mood, He might be our only hope.
Monday, August 14, 2017
Losing a Friend
Where are you my love?
I miss you so
I love you more
Than you'll ever know
Now my heart breaks
Because you're not here
And I'm lost in my life
Without you near
Each day I pray
For a new start
And God takes away
Some pain in my heart
But sometimes at night
When I see the stars
My thoughts again find you
Wherever you are.
You're not so far
Sometimes it seems
I see your face
Inside my sweet dreams
But when I awake
I hurt anew
My dreams in the real world
I can't share with you.
So now I pray
Dear God let me see
What I'm to take
From your memory
Lord I'm so tired
I feel so alone
So hold me beside you
Till Your love I know.
-Without You (for Shasta the Samoyed Wonder Dog), 1998
It had been 19 years since I lost a pet. It doesn't get any easier.
The thing is, I was never even a cat person. At least, I never was until Sebastian.
Cats are selfish, standoffish, and disloyal. They're aloof, attitudinal, and mysterious, unable to be counted on from moment to moment, as likely to curl up and want endless snuggling as to hiss and walk away. Cats are dramatic and high maintenance.
Except Sebastian was none of those things.
He was sweet and loving. He never turned down an offer to be petted, and never wanted alone time, unless he was sleeping, and usually even then, he wanted to be in contact with a body part of one of his humans.
He had every positive quality people associate with dogs, and he also pooped in a box and covered it. Except for his excessive ability to shed on anything within the same area code, he was the perfect cat.
Sebastian was my wife's cat when we were dating. He was fluffy and sweet and loved plopping down in my lap and getting stroked. I had a job back then that required wearing a suit every day, and he put my dry cleaner's kids through college. I eventually got my own cat, Trouble, in the hopes that giving him a friend would result in diverting his attention enough to get some relief to my cleaning bills, but instead I just doubled the odds that I'd end up with something fluffy shedding all over my clothes.
Sebastian went through a lot with us. He was there when Liz was diagnosed with diabetes. He was there when we got married (Well, not literally. But perhaps we should have invited him--he would have looked nice in a top hat.) He lived through houses in Georgia, Alabama, Missouri, Tennessee and two in California, and a whole lot of moves in the process. Our career paths have led us to start over in new places so many times, but he was the constant voice telling us we'd make it through as long as we petted him. I'm not sure if that was actually true, but that's certainly what he thought.
He was my friend when I was sad, and my companion when I wanted to celebrate. He was a part Ragdoll breed, so he went limp when you picked him up, making him an amazing dancer and puppet.
Last year, he even tried to play doctor, gently headbutting my left temple after MS took my eyesight on that side. I still don't understand how he knew. But somehow, whatever we needed, that's what he tried to give. He sat in our laps through crappy jobs, professional success, family drama, answered prayers, shattered dreams, and friends who let us down.
Sebastian never did. For 17 years (16 for me) he was our dependable friend who didn't care if you got passed over for a promotion, or if our emotions didn't make sense. He wasn't critical if I wrote a bad brief, or if Liz didn't see enough clients in a week. He was unconcerned if I wrote a bad blog post or if Liz painted her nails.
If a lap was available, that was good enough. It was the lowest pressure friendship I ever had, and he's been there for our entire professional adult lives.
We used to joke that Sebastian was actually Aslan, the divine lion from the C.S. Lewis Narnia series who comes down to the surface and helps the characters through their adventures (Yes, Trouble is the Witch, and they often hung out in our Wardrobe). In addition to his long, flowing mane, sometimes he almost seemed to have supernatural abilities.
For one, he had an inexplicable talent for jumping from the floor onto the bed and landing directly on my crotch.
Two, and perhaps relatedly, he always knew when one of his people were in pain. He would try to help.
He would wake Liz up at night when her blood sugar was low and meow until she ate something, and then he would stay up with her until she stabilized. When I broke my knee, he passed up his normal lounging spots to sit beside it, trying to impart some positive feline energy. For the most part, Trouble ended up claiming my lap and Sebastian gravitated to Liz's, but the week I was on best rest after my spinal tap Sebastian never left my side. If I had worked a 12-hour day, he would plop in my lap and help me unwind, ensuring another trip to the drycleaner in the process.
He wanted to solve our problems even until the end. Our vet had noticed that he had a fast heartbeat, so we took him in about two months ago for some testing. He was 17 and seemed to be doing mostly fine, so we thought that if he could stay on top of the heart issue we might have him into his 20's. But the vet's diagnostic imaging found a growing tumor inside of him, and he warned us that Sebastian was on his ninth life, with somewhere between a few weeks and few months left. We were distraught when we got home. Sebastian sensed the mood was off, and purred and gave us headbutts trying to cheer us up from mourning him.
That was just who he was.
He was also a talker. He would meow at me every morning, just to say hello after a night of speechless sleep. Soon, I decided to turn our morning chats into the type of intellectual debates a cat of his sophistication would appreciate. He would meow, I would ask him if he was concerned about North Korea. He would meow back the moment I stopped talking, in a tone indicating his concern, and I would ask him what he would do about it. He would respond back again, with an enlightening meow, usually making a point I hadn't previously considered. These were how our mornings went.
I wish he had been President.
I also know he wouldn't want us moping over him now. By the end, he had shrunk from a 12-pound majestic fluffball with a lion-like mane, to a six-pound shadow who lost his balance all the time. It was a little bit sad, and not only because MS gives me the same symptoms of balance issues and weight loss. It was almost as though he was trying to take them from me by sharing in them.
I bet he would have if he could.
It's nice to think that he's himself again. It's nice to think that his long flowing mane is back, that he walks without losing his balance, and that he's eating without restriction on the other side. It's nice to think that he won't need steroids any more to breathe.
It's nice to think that when I see him again, I'll be able to see him with my left eye, and we'll both be whole again.
Until then, I don't know how I'm going to make it through. But I know he's looking down now, cheering me on, in between his snacks of chicken.
I can't wait to see him again. I'm having a hard time making sense of the world and I could really use his advice.
I miss you so
I love you more
Than you'll ever know
Now my heart breaks
Because you're not here
And I'm lost in my life
Without you near
Each day I pray
For a new start
And God takes away
Some pain in my heart
But sometimes at night
When I see the stars
My thoughts again find you
Wherever you are.
You're not so far
Sometimes it seems
I see your face
Inside my sweet dreams
But when I awake
I hurt anew
My dreams in the real world
I can't share with you.
So now I pray
Dear God let me see
What I'm to take
From your memory
Lord I'm so tired
I feel so alone
So hold me beside you
Till Your love I know.
-Without You (for Shasta the Samoyed Wonder Dog), 1998
It had been 19 years since I lost a pet. It doesn't get any easier.
The thing is, I was never even a cat person. At least, I never was until Sebastian.
Cats are selfish, standoffish, and disloyal. They're aloof, attitudinal, and mysterious, unable to be counted on from moment to moment, as likely to curl up and want endless snuggling as to hiss and walk away. Cats are dramatic and high maintenance.
Except Sebastian was none of those things.
He was sweet and loving. He never turned down an offer to be petted, and never wanted alone time, unless he was sleeping, and usually even then, he wanted to be in contact with a body part of one of his humans.
He had every positive quality people associate with dogs, and he also pooped in a box and covered it. Except for his excessive ability to shed on anything within the same area code, he was the perfect cat.
Sebastian was my wife's cat when we were dating. He was fluffy and sweet and loved plopping down in my lap and getting stroked. I had a job back then that required wearing a suit every day, and he put my dry cleaner's kids through college. I eventually got my own cat, Trouble, in the hopes that giving him a friend would result in diverting his attention enough to get some relief to my cleaning bills, but instead I just doubled the odds that I'd end up with something fluffy shedding all over my clothes.
Sebastian went through a lot with us. He was there when Liz was diagnosed with diabetes. He was there when we got married (Well, not literally. But perhaps we should have invited him--he would have looked nice in a top hat.) He lived through houses in Georgia, Alabama, Missouri, Tennessee and two in California, and a whole lot of moves in the process. Our career paths have led us to start over in new places so many times, but he was the constant voice telling us we'd make it through as long as we petted him. I'm not sure if that was actually true, but that's certainly what he thought.
He was my friend when I was sad, and my companion when I wanted to celebrate. He was a part Ragdoll breed, so he went limp when you picked him up, making him an amazing dancer and puppet.
Last year, he even tried to play doctor, gently headbutting my left temple after MS took my eyesight on that side. I still don't understand how he knew. But somehow, whatever we needed, that's what he tried to give. He sat in our laps through crappy jobs, professional success, family drama, answered prayers, shattered dreams, and friends who let us down.
Sebastian never did. For 17 years (16 for me) he was our dependable friend who didn't care if you got passed over for a promotion, or if our emotions didn't make sense. He wasn't critical if I wrote a bad brief, or if Liz didn't see enough clients in a week. He was unconcerned if I wrote a bad blog post or if Liz painted her nails.
If a lap was available, that was good enough. It was the lowest pressure friendship I ever had, and he's been there for our entire professional adult lives.
We used to joke that Sebastian was actually Aslan, the divine lion from the C.S. Lewis Narnia series who comes down to the surface and helps the characters through their adventures (Yes, Trouble is the Witch, and they often hung out in our Wardrobe). In addition to his long, flowing mane, sometimes he almost seemed to have supernatural abilities.
For one, he had an inexplicable talent for jumping from the floor onto the bed and landing directly on my crotch.
Two, and perhaps relatedly, he always knew when one of his people were in pain. He would try to help.
He would wake Liz up at night when her blood sugar was low and meow until she ate something, and then he would stay up with her until she stabilized. When I broke my knee, he passed up his normal lounging spots to sit beside it, trying to impart some positive feline energy. For the most part, Trouble ended up claiming my lap and Sebastian gravitated to Liz's, but the week I was on best rest after my spinal tap Sebastian never left my side. If I had worked a 12-hour day, he would plop in my lap and help me unwind, ensuring another trip to the drycleaner in the process.
He wanted to solve our problems even until the end. Our vet had noticed that he had a fast heartbeat, so we took him in about two months ago for some testing. He was 17 and seemed to be doing mostly fine, so we thought that if he could stay on top of the heart issue we might have him into his 20's. But the vet's diagnostic imaging found a growing tumor inside of him, and he warned us that Sebastian was on his ninth life, with somewhere between a few weeks and few months left. We were distraught when we got home. Sebastian sensed the mood was off, and purred and gave us headbutts trying to cheer us up from mourning him.
That was just who he was.
He was also a talker. He would meow at me every morning, just to say hello after a night of speechless sleep. Soon, I decided to turn our morning chats into the type of intellectual debates a cat of his sophistication would appreciate. He would meow, I would ask him if he was concerned about North Korea. He would meow back the moment I stopped talking, in a tone indicating his concern, and I would ask him what he would do about it. He would respond back again, with an enlightening meow, usually making a point I hadn't previously considered. These were how our mornings went.
I wish he had been President.
I also know he wouldn't want us moping over him now. By the end, he had shrunk from a 12-pound majestic fluffball with a lion-like mane, to a six-pound shadow who lost his balance all the time. It was a little bit sad, and not only because MS gives me the same symptoms of balance issues and weight loss. It was almost as though he was trying to take them from me by sharing in them.
I bet he would have if he could.
It's nice to think that he's himself again. It's nice to think that his long flowing mane is back, that he walks without losing his balance, and that he's eating without restriction on the other side. It's nice to think that he won't need steroids any more to breathe.
It's nice to think that when I see him again, I'll be able to see him with my left eye, and we'll both be whole again.
Until then, I don't know how I'm going to make it through. But I know he's looking down now, cheering me on, in between his snacks of chicken.
I can't wait to see him again. I'm having a hard time making sense of the world and I could really use his advice.
Saturday, April 29, 2017
Unhelpful Advice
"Hi, this is Betsy with Blue Cross calling from out Health First Program, just to check up on you."
"Didn't you just call me last week?"
"Yes, last week I called you to talk about the importance of staying cool. Today I'm calling to talk about making sure you stay hydrated."
I don't know if that was actually why Betsy was calling because I didn't answer the phone.
Blue Cross had just called me the week before to quiz me if I knew how to take care of myself and it was entirely unhelpful. The two questions I had, whether I would get any pushback for switching over to the more effective new drug, and whether I could be referred to a dietician, she couldn't answer. She just wanted to tell me about cooling vests and send me links where I could order one. I told her I had seen plenty online and new how to order one if I wanted, as an active user of this new invention called the internet.
I get lots of calls like that.
"Hi, this is Theresa, your personal nurse. I was calling to check in, and also to schedule a time to come by and visit."
"Um, ok. But I thought we had gone over everything last time when you gave me the booklet on how to take my shot. I didn't throw it away."
"Yes, but you are on a scholarship program that allows me to provide three visits a year. It's generously paid for by the makers of Copaxone out of their charitable fund!"
"That and the $5600 a month my insurance pays for my prescription."
"Well, I was just wondering if you had any questions?"
"Just the same one that I asked the other two times you came out to my house. Maybe I'm not asking it right, so let me try it this way: Some drugs are effective immediately, but some need to build up in one's system before they start working fully. How long does it take for Copaxone to become fully effective?
"Oh, I understand. You see, Copaxone doesn't heal you, it just slows down MS's progression. It helps to keep you from getting worse!"
"I know. That's what you keep telling me every time I ask this question. But how long until it starts working to keep me from getting worse?
"Are you getting worse?"
"It's day to day, but not really, not that I can tell. But some people say it takes 6-9 months for Copaxone to kick in and start to help me at all? Is that true?
"Studies have shown that Copaxone is more effective than a placebo for patients who have been taking it nine months."
"But what about at 3 months? Or at 6 months?"
"It works differently for everyone."
"But what are the statistical norms. How long can I expect before Copaxone starts making a difference?
"Are you asking me if Copaxone will take away your symptoms? It's not meant to do that."
"Never mind."
"So tell me about your diet?"
"I eat no dairy, no red meat, low sugar, and usually about 5 grams of saturated fat per day, always less than 10.
"That's good! So many people don't take of themselves, don't exercise, and get fat and immobile!"
"I try."
"How about the shots? Are they hurting any less?"
"No, they are still really painful."
"That's because you are so skinny. If you had more fat on you, they'd hurt less. Maybe eat some cake once in a while--no need to deprive yourself!
"But we were just talking about how diet impacts the progression of the disease? Isn't it better for me to just live with the painful shot than risking the disease progressing?"
"If you're asking about whether Copaxone will heal you, or stop the disease from progressing, it won't. It just slows down the disease."
I actually did have this conversation with Theresa. Twice. I condensed it here, but in real life it took about half an hour both times.
But at least Theresa is pleasant, unlike some callers.
"Hello, this is Dr. Kilker's Office, your Primary Care Physician. We were calling to try to get you to schedule an appointment to come see him."
"You mean the doctor who yelled at me last time?"
"Why did he yell at you?"
"I had called to say I had gone blind in my left eye, and my MRI showed I had optic neuritis. I was calling to get a referral to see a neurologist. He started screaming over the phone, telling me to go immediately to the ER to get an MRI."
"Well, that sounds like a serious issues you needed to get checked out."
"It was, but I already had gotten the MRI he was yelling about. I just needed a neurologist to look at it and diagnosis whether I had MS, and Dr. Kilker wouldn't refer me to one, or even schedule a visit, he just yelled at me to go to the ER to get the tests that I was trying to tell him I had already received."
"So, would you like to come in for a check-up now?"
"No, I would like to find a new primary care physician."
I got a message from my doctor's office on Thursday. I haven't actually called back yet, but when I do, I imagine that's how it will go.
I get so many calls from nurses, doctors, and insurance companies, even the makers of my medicine all every month to ask if I'm ready for a refill and if I have any questions for their pharmacist. They all think they are being helpful, except for maybe the ones who are just trying to sell me cooling vests, or somehow otherwise trying to make money off of my disease.
But if you're one of my numerous friends to whom I owe you a return phone call, it's probably because I'm too busy fending off these outside to have the energy to chat.
I get other "help" too. My dental hygienist was telling me the other day that she heard of a surgery that untwists the nerves in one's neck that is a miracle cure for MS. She admitted it sounded crazy. I agreed with her, explaining that if that really worked, there would be 400,000 fewer people in America with MS and one super rich doctor who figured that out.
A co-worker told me MS was caused by diet coke, and could be fixed by taking a pill, although I couldn't get said pill from my doctor. Or any licensed doctor. I just needed to look into it online. Because the internet has always been right before.
Someone else told me that running had caused me to go blind, even after I explained that cardio exercise has been proven even more effective than the best existing medication in slowing down the progression of MS.
I've heard that too much dairy caused MS, and that I shouldn't use dairy substitutes instead because they are even worse. Some people swear by the Paleo diet's effects on the disease, others say that carbs actually help. Studies have shown that less than 10 g of saturated fat per day produce benefits, but I know people with the disease who don't strictly count and are doing just fine.
Some MS forums say not to eat chicken either, some say white meat is ok.
I get dirty looks sometimes when I admit that I haven't given up gluten, a sacrifice that some people say helped them, but for which there is no scientifically established benefit.
In short, I get a lot of advice on a topic for which everyone is still pretty much just guessing. I don't mind it if it's given in the right spirit from someone close to me, but getting it constantly from near-strangers gets old.
"Just eat healthy, cut out the dairy and red meat, get lots of sleep, plenty of exercise, and don't push it too hard," my neurologist told me. "Take your medicine, and you can still live a full, productive life."
It seems like she's oversimplified things way too much.
She didn't even mention a cooling vest.
"Didn't you just call me last week?"
"Yes, last week I called you to talk about the importance of staying cool. Today I'm calling to talk about making sure you stay hydrated."
I don't know if that was actually why Betsy was calling because I didn't answer the phone.
Blue Cross had just called me the week before to quiz me if I knew how to take care of myself and it was entirely unhelpful. The two questions I had, whether I would get any pushback for switching over to the more effective new drug, and whether I could be referred to a dietician, she couldn't answer. She just wanted to tell me about cooling vests and send me links where I could order one. I told her I had seen plenty online and new how to order one if I wanted, as an active user of this new invention called the internet.
I get lots of calls like that.
"Hi, this is Theresa, your personal nurse. I was calling to check in, and also to schedule a time to come by and visit."
"Um, ok. But I thought we had gone over everything last time when you gave me the booklet on how to take my shot. I didn't throw it away."
"Yes, but you are on a scholarship program that allows me to provide three visits a year. It's generously paid for by the makers of Copaxone out of their charitable fund!"
"That and the $5600 a month my insurance pays for my prescription."
"Well, I was just wondering if you had any questions?"
"Just the same one that I asked the other two times you came out to my house. Maybe I'm not asking it right, so let me try it this way: Some drugs are effective immediately, but some need to build up in one's system before they start working fully. How long does it take for Copaxone to become fully effective?
"Oh, I understand. You see, Copaxone doesn't heal you, it just slows down MS's progression. It helps to keep you from getting worse!"
"I know. That's what you keep telling me every time I ask this question. But how long until it starts working to keep me from getting worse?
"Are you getting worse?"
"It's day to day, but not really, not that I can tell. But some people say it takes 6-9 months for Copaxone to kick in and start to help me at all? Is that true?
"Studies have shown that Copaxone is more effective than a placebo for patients who have been taking it nine months."
"But what about at 3 months? Or at 6 months?"
"It works differently for everyone."
"But what are the statistical norms. How long can I expect before Copaxone starts making a difference?
"Are you asking me if Copaxone will take away your symptoms? It's not meant to do that."
"Never mind."
"So tell me about your diet?"
"I eat no dairy, no red meat, low sugar, and usually about 5 grams of saturated fat per day, always less than 10.
"That's good! So many people don't take of themselves, don't exercise, and get fat and immobile!"
"I try."
"How about the shots? Are they hurting any less?"
"No, they are still really painful."
"That's because you are so skinny. If you had more fat on you, they'd hurt less. Maybe eat some cake once in a while--no need to deprive yourself!
"But we were just talking about how diet impacts the progression of the disease? Isn't it better for me to just live with the painful shot than risking the disease progressing?"
"If you're asking about whether Copaxone will heal you, or stop the disease from progressing, it won't. It just slows down the disease."
I actually did have this conversation with Theresa. Twice. I condensed it here, but in real life it took about half an hour both times.
But at least Theresa is pleasant, unlike some callers.
"Hello, this is Dr. Kilker's Office, your Primary Care Physician. We were calling to try to get you to schedule an appointment to come see him."
"You mean the doctor who yelled at me last time?"
"Why did he yell at you?"
"I had called to say I had gone blind in my left eye, and my MRI showed I had optic neuritis. I was calling to get a referral to see a neurologist. He started screaming over the phone, telling me to go immediately to the ER to get an MRI."
"Well, that sounds like a serious issues you needed to get checked out."
"It was, but I already had gotten the MRI he was yelling about. I just needed a neurologist to look at it and diagnosis whether I had MS, and Dr. Kilker wouldn't refer me to one, or even schedule a visit, he just yelled at me to go to the ER to get the tests that I was trying to tell him I had already received."
"So, would you like to come in for a check-up now?"
"No, I would like to find a new primary care physician."
I got a message from my doctor's office on Thursday. I haven't actually called back yet, but when I do, I imagine that's how it will go.
I get so many calls from nurses, doctors, and insurance companies, even the makers of my medicine all every month to ask if I'm ready for a refill and if I have any questions for their pharmacist. They all think they are being helpful, except for maybe the ones who are just trying to sell me cooling vests, or somehow otherwise trying to make money off of my disease.
But if you're one of my numerous friends to whom I owe you a return phone call, it's probably because I'm too busy fending off these outside to have the energy to chat.
I get other "help" too. My dental hygienist was telling me the other day that she heard of a surgery that untwists the nerves in one's neck that is a miracle cure for MS. She admitted it sounded crazy. I agreed with her, explaining that if that really worked, there would be 400,000 fewer people in America with MS and one super rich doctor who figured that out.
A co-worker told me MS was caused by diet coke, and could be fixed by taking a pill, although I couldn't get said pill from my doctor. Or any licensed doctor. I just needed to look into it online. Because the internet has always been right before.
Someone else told me that running had caused me to go blind, even after I explained that cardio exercise has been proven even more effective than the best existing medication in slowing down the progression of MS.
I've heard that too much dairy caused MS, and that I shouldn't use dairy substitutes instead because they are even worse. Some people swear by the Paleo diet's effects on the disease, others say that carbs actually help. Studies have shown that less than 10 g of saturated fat per day produce benefits, but I know people with the disease who don't strictly count and are doing just fine.
Some MS forums say not to eat chicken either, some say white meat is ok.
I get dirty looks sometimes when I admit that I haven't given up gluten, a sacrifice that some people say helped them, but for which there is no scientifically established benefit.
In short, I get a lot of advice on a topic for which everyone is still pretty much just guessing. I don't mind it if it's given in the right spirit from someone close to me, but getting it constantly from near-strangers gets old.
"Just eat healthy, cut out the dairy and red meat, get lots of sleep, plenty of exercise, and don't push it too hard," my neurologist told me. "Take your medicine, and you can still live a full, productive life."
It seems like she's oversimplified things way too much.
She didn't even mention a cooling vest.
Thursday, March 30, 2017
Running Diary: Running a Half Marathon With Multiple Sclerosis
I'm standing with my two brothers and the Livermore Half Marathon starts in three minutes. It's my seventh half, but the first since my MS diagnosis. When I was first diagnosed in November, I wasn't sure I'd even be able to report to my desk job following Monday. Four months later, here I was, about to run 13 miles. I was thankful beyond words to be there, part of the crowd and not missing the biggest event in my city. I needed to be here.
I wanted to beat the hour and forty five minute race goal I've been chasing for four years, but what I really needed was to beat prior best of 1:47:31. I needed to prove that my life wouldn't just be a slow and steady decline from November 10th onward.
Here's how it went.
6:58: The national anthem has just finished, and I've just managed to spot my wife in the crowd to give a thumbs up before the race starts in two minutes. Usually I have a little more time to pump myself up beforehand, but today is an early start time and I'm operating on three hours sleep, having been unable to turn my brain off the night before what might be my last race. My brother says a quick prayer for the three of us and we inch toward the start line. We're all wearing orange, the official color of the fight against MS, with wristbands to match.
I look down at my race bib, which has the words "MS can't stop me" printed across the front. As I think of all the people who told me not to do this race, I sure hope my bib is right.
7:01: We're off and I'm feeling good. It's the first day in two weeks I haven't felt nerve pain on my left side. I try to go slowly and conserve some energy, but I feel my confidence growing with each step. This might be the race I finally hit 1:45 and move on to something new.
7:09: One of the best parts of race day are the signs of the spectators. "You are beating all the people behind you," one reads. "Your feet hurt because you're kicking butt" says another. I smile.
7:12: The sun just rose on a gloomy morning, but I'm wearing sunglasses. My MS-related nerve damage causes me to go blind in my left eye when I get overheated, and it gets really distracting when I run more than a mile or two. Sunglasses help me notice it less. Although I'm sure the spectators just think I'm being Mr. Cool. Which is also true.
7:16: I'm two miles in and going way too fast, I learn when I my watch beeps my time. I'm so excited to be here that I've made a rookie mistake, letting my adrenaline take over when I should be hanging back. I try to slow down and hope the damage isn't already done.
7:17: A sign reads, "You're beating all the people who didn't run." Good point.
7:21: A kid who couldn't have been more than two is standing on the opposite edge of the course with a hand held out to give High-Fives. It breaks my heart not to go help him out, but he's all the way on the other side. I smile when two closer runners go over to play along.
7:24: My legs are feeling tired. This shouldn't be happening already. I take an energy gel and hope it's just a phase.
7:28: Four miles in, and I'm slightly ahead of my goal pace but already feeling drained. I've pushed through six miles before after I stopped feeling good, but today I still have 9.1 to go. I tell myself I just have to do it. I'm wearing two rubber wristbands: a blue one symbolizing my brother's successful battle against colon cancer, and an orange one symbolizing the fight against MS. If he can do 12 rounds of chemo, I tell myself, I can do 9 more miles. And this might be my last shot.
7:37: My mp3 player just turned itself off. I dig it out of my pocket and press all the buttons to get going again. It's aggravating, but I have too far to go to be without it.
7:42: The same thing happens again. I want to throw the stupid thing into the vineyards beside me, but I know I need to musical motivation.
7:43: I flip to another song to see if that fixes the problem. Success.
7:57: Eight miles in, and I'm hurting but still on pace. I just climbed a mile-long incline without slowing down, and the course gets easier after one more uphill mile. The aid station is giving out water, an energy drink, and energy gels. I would like one of each, but only have two hands. It seems like someone should have maybe considered this problem before putting all three at the same stop.
8:00: Mile 9 is a 150 foot climb, and about a third of the way through I suddenly lose my energy, motivation and will to live. I trudge through, hoping I can recover on the downhill next mile. And most annoyingly, I spend what seems like an eternity fighting with the packaging on my last chewable energy tablet. I can't get it out of the plastic and literally have to use all my strength to tear it open. The race is no longer going my way.
8:07: I see a four-year old running against traffic by himself alongside the edge of the course. I wonder if I'm starting to hallucinate. Seconds later, a parent emerges jogging after him, grinning widely and in no particular hurry. I want to scream at him for being the World's Worst Parent, but I don't have the energy.
8: 14: I lost a ton of time on the uphill climb. I toss the plastic packaging out of my pocket, convincing myself that getting rid of that ounce of extra packaging might make a difference. The course marker indicating Mile 9 registers at 9.09 miles on my GPS watch, so I start looking for ways to cut corners to make up the distance. I'm fading.
8:22: Mile 10 was the downhill on the backside of the brutal uphill Mile 9. I ran it exactly on pace, but I didn't make up any of the time I had lost. I'm starting to lose hope I can hit my mark. There's one more downhill mile to make up some time, but I'm becoming weak and incoherent.
8:31: Mile 11 was downhill and I still couldn't keep up my goal pace. I realize I won't get the 1:45 I was hoping for and want to quit. My brain is a wet noodle, but I suddenly remember that I'm still way ahead of pace for a new personal record, if I can just keep up what I'm doing for two more miles. That's just enough motivation to keep me from quitting.
8:32: My left leg suddenly reminds me I have MS. I get shooting nerve pains, and there's a hitch in my motion because my leg won't move as quickly as I tell it to. At Mile 11.1, I have 16:50 to run two more miles. I've been running at about an 8:10 pace, so I think I can do it.
8:32: Sign: "Go Runners! Don't poop yourself!"
There were a bunch of other signs too, and I'm sure some of them must have been good. I didn't have the energy to read anything that wasn't directly in front of me. And there was a slow song on my mp3 player, but the idea of using energy to dig in my pocket to get it out and skip to the next one would have been laughable if I had the energy to laugh.
8:39: Mile 12 took 8:23, which means that I'm fading from my 8:10 pace, and that I have 8:27 to run one more mile. I just need to repeat the mile I just did, but my hips and hamstrings are stiff, and my left leg is rebelling against me. I know that with one final push I can validate my post-diagnosis identity, but it hurts too badly to go any faster. At Mile 12.85, I check my watch and see that I'm no longer on pace to break my personal record, which finally gives me enough panic to go a little faster. Otherwise, all this pain will be in vain.
8:47: I turn the final corner and see my niece standing along the railing. I weakly give a peace sign, as I notice I have twenty seconds to get across the finish line. I sprint as fast as I can go down the home stretch, passing another runner along the way, who looks at me like I'm an ultra competitive jerk for showing him up at the finish line. But I don't care about him, I'm just trying to beat my prior, healthier self.
8:48: There are three mats on the course, each covering a device that reads the timing chip on runners' bibs. The idea is that if one device misses you crossing it, there are others to make up for it and give you an official time. Depending on which mat read my chip as I crossed over the line, I was either six seconds ahead of my record, one second ahead of it, or one second behind.
8:49: I finish and hold on to a barricade railing at the finish line for dear life. A race staffer comes over and asks if I need help. I said no, I just need to stand still. Before long a second staffer joins her, and they offer me a wheelchair to move me away from the finish line. I decline, but a wheelchair magically appears moments later nonetheless. The workers try to get me to sit in it, so they can wheel me away.
8:51: I came close to taking the wheelchair. It would have been an easier way to get to the water station, and I really did not want to spend any more energy. But that would have defeated the whole purpose of running this race. I just ran 13.12 miles to prove I didn't need that wheelchair they were trying to give me. I wanted to scream that message at the race workers, but at that moment, all I had the energy to do was not to sit down.
After having beaten MS for more than 13 miles, I wasn't about to let it beat me at the finish line.
The event staff gave up on the wheelchair and began walking me over to get water. My wife crossed the barrier and they transferred me into her custody, where I felt fine ten minutes later (after drinking some chocolate milk, which in my post-race brain fog, I totally forgot is forbidden by the MS diet).
My brothers would finish the race a few minutes later, and my sister-in-law and niece (two different people), who were also in town for the race, tended to their runners while I tried to explain my uncertain finishing result to my wife.
Later in the afternoon, the official results published said that after two hours of running, I missed my record time by exactly one second. I immediately considered the amount of time I spent on the plastic wrapping of my energy pack and silently screamed.
But not for long. Judging from either of the other two finish lines that somehow missed my crossing them (and I absolutely am), I set a personal record by either one or six seconds. Regardless, my prior best time came in this race two years ago, when they measured the course too short by .06 of a mile, so this was absolutely a better run by any objective measure than I had run before I was disabled.
That was all I had really wanted to prove.
When I was diagnosed with MS, I immediately gave up a lot of my wildest dreams and become more concerned with stuff like how I would pay the bills, walk up stairs, and not pee on myself. Life is harder now, in a million ways I can't quickly describe, even with my disease in remission. But if I can still run faster than I could before, even if it takes a lot more effort, maybe, just maybe, I can still accomplish some other things too.
In my former life, when I felt down, I used to listen to a Chris Tomlin song that included the lyrics "greater things are yet to come." I remember thinking in November that I'd have to find a new song now, because my progressive disability would mean that that sentiment couldn't possibly be true for me anymore. Maybe I'd still find moments of joy, but life would never be what it was.
And maybe it won't be exactly what it was.
But maybe that's ok.
Maybe those moments of success feel just a little bit sweeter now that they are harder to earn.
Maybe accomplishment and meaning don't require a fully functional left eye or leg.
Maybe joy doesn't either.
Maybe life's obstacles are detours and not dead ends.
Maybe I was too quick to draw a conclusion about my own limitations.
And maybe I've never been happier to have been wrong.
Because maybe MS can't stop me. And maybe I just proved it.
I wanted to beat the hour and forty five minute race goal I've been chasing for four years, but what I really needed was to beat prior best of 1:47:31. I needed to prove that my life wouldn't just be a slow and steady decline from November 10th onward.
Here's how it went.
6:58: The national anthem has just finished, and I've just managed to spot my wife in the crowd to give a thumbs up before the race starts in two minutes. Usually I have a little more time to pump myself up beforehand, but today is an early start time and I'm operating on three hours sleep, having been unable to turn my brain off the night before what might be my last race. My brother says a quick prayer for the three of us and we inch toward the start line. We're all wearing orange, the official color of the fight against MS, with wristbands to match.
I look down at my race bib, which has the words "MS can't stop me" printed across the front. As I think of all the people who told me not to do this race, I sure hope my bib is right.
7:01: We're off and I'm feeling good. It's the first day in two weeks I haven't felt nerve pain on my left side. I try to go slowly and conserve some energy, but I feel my confidence growing with each step. This might be the race I finally hit 1:45 and move on to something new.
7:09: One of the best parts of race day are the signs of the spectators. "You are beating all the people behind you," one reads. "Your feet hurt because you're kicking butt" says another. I smile.
7:12: The sun just rose on a gloomy morning, but I'm wearing sunglasses. My MS-related nerve damage causes me to go blind in my left eye when I get overheated, and it gets really distracting when I run more than a mile or two. Sunglasses help me notice it less. Although I'm sure the spectators just think I'm being Mr. Cool. Which is also true.
7:16: I'm two miles in and going way too fast, I learn when I my watch beeps my time. I'm so excited to be here that I've made a rookie mistake, letting my adrenaline take over when I should be hanging back. I try to slow down and hope the damage isn't already done.
7:17: A sign reads, "You're beating all the people who didn't run." Good point.
7:21: A kid who couldn't have been more than two is standing on the opposite edge of the course with a hand held out to give High-Fives. It breaks my heart not to go help him out, but he's all the way on the other side. I smile when two closer runners go over to play along.
7:24: My legs are feeling tired. This shouldn't be happening already. I take an energy gel and hope it's just a phase.
7:28: Four miles in, and I'm slightly ahead of my goal pace but already feeling drained. I've pushed through six miles before after I stopped feeling good, but today I still have 9.1 to go. I tell myself I just have to do it. I'm wearing two rubber wristbands: a blue one symbolizing my brother's successful battle against colon cancer, and an orange one symbolizing the fight against MS. If he can do 12 rounds of chemo, I tell myself, I can do 9 more miles. And this might be my last shot.
7:37: My mp3 player just turned itself off. I dig it out of my pocket and press all the buttons to get going again. It's aggravating, but I have too far to go to be without it.
7:42: The same thing happens again. I want to throw the stupid thing into the vineyards beside me, but I know I need to musical motivation.
7:43: I flip to another song to see if that fixes the problem. Success.
7:57: Eight miles in, and I'm hurting but still on pace. I just climbed a mile-long incline without slowing down, and the course gets easier after one more uphill mile. The aid station is giving out water, an energy drink, and energy gels. I would like one of each, but only have two hands. It seems like someone should have maybe considered this problem before putting all three at the same stop.
8:00: Mile 9 is a 150 foot climb, and about a third of the way through I suddenly lose my energy, motivation and will to live. I trudge through, hoping I can recover on the downhill next mile. And most annoyingly, I spend what seems like an eternity fighting with the packaging on my last chewable energy tablet. I can't get it out of the plastic and literally have to use all my strength to tear it open. The race is no longer going my way.
8:07: I see a four-year old running against traffic by himself alongside the edge of the course. I wonder if I'm starting to hallucinate. Seconds later, a parent emerges jogging after him, grinning widely and in no particular hurry. I want to scream at him for being the World's Worst Parent, but I don't have the energy.
8: 14: I lost a ton of time on the uphill climb. I toss the plastic packaging out of my pocket, convincing myself that getting rid of that ounce of extra packaging might make a difference. The course marker indicating Mile 9 registers at 9.09 miles on my GPS watch, so I start looking for ways to cut corners to make up the distance. I'm fading.
8:22: Mile 10 was the downhill on the backside of the brutal uphill Mile 9. I ran it exactly on pace, but I didn't make up any of the time I had lost. I'm starting to lose hope I can hit my mark. There's one more downhill mile to make up some time, but I'm becoming weak and incoherent.
8:31: Mile 11 was downhill and I still couldn't keep up my goal pace. I realize I won't get the 1:45 I was hoping for and want to quit. My brain is a wet noodle, but I suddenly remember that I'm still way ahead of pace for a new personal record, if I can just keep up what I'm doing for two more miles. That's just enough motivation to keep me from quitting.
8:32: My left leg suddenly reminds me I have MS. I get shooting nerve pains, and there's a hitch in my motion because my leg won't move as quickly as I tell it to. At Mile 11.1, I have 16:50 to run two more miles. I've been running at about an 8:10 pace, so I think I can do it.
8:32: Sign: "Go Runners! Don't poop yourself!"
There were a bunch of other signs too, and I'm sure some of them must have been good. I didn't have the energy to read anything that wasn't directly in front of me. And there was a slow song on my mp3 player, but the idea of using energy to dig in my pocket to get it out and skip to the next one would have been laughable if I had the energy to laugh.
8:39: Mile 12 took 8:23, which means that I'm fading from my 8:10 pace, and that I have 8:27 to run one more mile. I just need to repeat the mile I just did, but my hips and hamstrings are stiff, and my left leg is rebelling against me. I know that with one final push I can validate my post-diagnosis identity, but it hurts too badly to go any faster. At Mile 12.85, I check my watch and see that I'm no longer on pace to break my personal record, which finally gives me enough panic to go a little faster. Otherwise, all this pain will be in vain.
8:47: I turn the final corner and see my niece standing along the railing. I weakly give a peace sign, as I notice I have twenty seconds to get across the finish line. I sprint as fast as I can go down the home stretch, passing another runner along the way, who looks at me like I'm an ultra competitive jerk for showing him up at the finish line. But I don't care about him, I'm just trying to beat my prior, healthier self.
8:48: There are three mats on the course, each covering a device that reads the timing chip on runners' bibs. The idea is that if one device misses you crossing it, there are others to make up for it and give you an official time. Depending on which mat read my chip as I crossed over the line, I was either six seconds ahead of my record, one second ahead of it, or one second behind.
8:49: I finish and hold on to a barricade railing at the finish line for dear life. A race staffer comes over and asks if I need help. I said no, I just need to stand still. Before long a second staffer joins her, and they offer me a wheelchair to move me away from the finish line. I decline, but a wheelchair magically appears moments later nonetheless. The workers try to get me to sit in it, so they can wheel me away.
8:51: I came close to taking the wheelchair. It would have been an easier way to get to the water station, and I really did not want to spend any more energy. But that would have defeated the whole purpose of running this race. I just ran 13.12 miles to prove I didn't need that wheelchair they were trying to give me. I wanted to scream that message at the race workers, but at that moment, all I had the energy to do was not to sit down.
After having beaten MS for more than 13 miles, I wasn't about to let it beat me at the finish line.
The event staff gave up on the wheelchair and began walking me over to get water. My wife crossed the barrier and they transferred me into her custody, where I felt fine ten minutes later (after drinking some chocolate milk, which in my post-race brain fog, I totally forgot is forbidden by the MS diet).
My brothers would finish the race a few minutes later, and my sister-in-law and niece (two different people), who were also in town for the race, tended to their runners while I tried to explain my uncertain finishing result to my wife.
Later in the afternoon, the official results published said that after two hours of running, I missed my record time by exactly one second. I immediately considered the amount of time I spent on the plastic wrapping of my energy pack and silently screamed.
But not for long. Judging from either of the other two finish lines that somehow missed my crossing them (and I absolutely am), I set a personal record by either one or six seconds. Regardless, my prior best time came in this race two years ago, when they measured the course too short by .06 of a mile, so this was absolutely a better run by any objective measure than I had run before I was disabled.
That was all I had really wanted to prove.
When I was diagnosed with MS, I immediately gave up a lot of my wildest dreams and become more concerned with stuff like how I would pay the bills, walk up stairs, and not pee on myself. Life is harder now, in a million ways I can't quickly describe, even with my disease in remission. But if I can still run faster than I could before, even if it takes a lot more effort, maybe, just maybe, I can still accomplish some other things too.
In my former life, when I felt down, I used to listen to a Chris Tomlin song that included the lyrics "greater things are yet to come." I remember thinking in November that I'd have to find a new song now, because my progressive disability would mean that that sentiment couldn't possibly be true for me anymore. Maybe I'd still find moments of joy, but life would never be what it was.
And maybe it won't be exactly what it was.
But maybe that's ok.
Maybe those moments of success feel just a little bit sweeter now that they are harder to earn.
Maybe accomplishment and meaning don't require a fully functional left eye or leg.
Maybe joy doesn't either.
Maybe life's obstacles are detours and not dead ends.
Maybe I was too quick to draw a conclusion about my own limitations.
And maybe I've never been happier to have been wrong.
Because maybe MS can't stop me. And maybe I just proved it.
Wednesday, March 1, 2017
Yes, I'm Going to Run a Half Marathon with Multiple Sclerosis
My feet go numb if I sit still for too long, due to the nerve damage multiple sclerosis continues to inflict, but I've found a cure for the problem: I'm going to avoid sitting still by running a half marathon.
That's not actually true.
In fact, I signed up for my hometown Livermore half marathon the day after I finished last year's race, long before I was diagnosed with anything other than sore legs. Between the festive race-day atmosphere, the rolling green hills and vineyards the course winds through, and the staff of thirteen wineries pouring at the finish line (many of whom are my friends), Half Marathon Day is my favorite day on the Livermore calendar. It's a celebration of my city, coinciding with the end of the dark, rainy winter transitioning into our sunny spring.
I just really hope I get to be part of it this year.
When I was diagnosed with MS in November, and my legs started shaking without my asking them to, one of my first thoughts was whether or not I'd be able to run this race.
It seemed like a long shot.
Thirteen miles is hard when your body works just fine, and mine had developed the annoying habit of destroying itself from the inside. Deep down, I always suspected that I was my own worst enemy, and now I have and proven it conclusively.
But I needed a goal, I wasn't ready to give up the person I used to be, and I was already out $64 for the registration fee, so I was hoping I have at least one more race left in me.
I'll let you know.
But it looks promising. For most of November and December I felt nerve pain upon even attempting a light jog, and wondering what 13 miles would feel like. When I told my legs to move they often paused to think about it for a while before deciding whether to comply. The one time I ran something that almost resembled my old pace, I had pain and coordination issues for the next two weeks, including a dramatic fall on the stairs in my office foyer. No one saw it, which was a shame because it would have scored a perfect 10.
My energy was low. When I got overheated, I went completely blind in my left eye (generally after about a mile) and that issue continues even now.
Those are the issues I'm fighting against, but so far, I like to think I'm winning the battle. I fight the pain and frustration by imagining the joy of finishing 13.1 miles, and proving that while I have MS, it doesn't have me. I know that just like every other facet of our lives, a bad day can be followed by a better one, and the ups and downs aren't entirely within our control. We just have to do the best we can with the hand we're dealt.
I set a goal of beating my slowest prior half marathon time, to prove that I could still outrun a prior version of my able-bodied self. It sounded nice inside my head, I thought, but my legs have not always agreed.
At my worst moments, when I can't get off the couch, can't stay warm, can't cool down, or can't stop the random shooting pains throughout my left side, I wonder if I can do this. I have never given up hope, but plenty of times it began to feel like a pipe dream.
The day after Christmas, I had my own little Christmas miracle, as my symptoms started to improve. They haven't gone away, and they apparently never will, but I was able to slowly build my speed and endurance back despite the pain.
Somewhere along the way, I stopped hoping to beat my worst time and starting hoping I could beat my best. That shouldn't be physically possible at 39-years-old, and without fully functioning legs, but somehow it doesn't seem out of reach.
I ran 11 miles last week at a faster training pace than I've ever run, so on one hand, it looks promising that in three weeks I can do the same for a race of 13. On the other hand, I fell out of my office chair one day last week, so it isn't exactly a sure thing.
Back when I was less confident I could actually do this, my brothers offered to run this race with me. I don't think either is happy about it. On good days when I send out a text brag about my latest training effort (I tend not to mention the occasions when I fall out of my office chair), I get responses back to the effect that I've sentenced them to Cruel and Unusual Punishment by dragging them into this unmitigated torture. But I almost died doing a triathlon with them five years ago, and we ran a Half Marathon in hurricane conditions the following year to beat my brother's colon cancer, and I don't want to mess with a winning formula. Putting ourselves through near death experiences for the sake of our health has become a bit of a family tradition.
I'm sure it will be a good story, regardless, provided we all survive. My wife and niece (not the same person) are running the 5k that day to be part of the experience too.
I hope it's a fun day. I hope I can do it. I hope I can blow my old personal record away.
"I hope you're not setting yourself up for failure," a sympathetic voice said, when I mentioned my goal to run this race.
I responded that my training was on schedule, but deep inside, what I thought was that failure would have been refusing to try.
Back in November, in my first blog with MS, I longed for the day when my legs wouldn't hurt and my vision would return. I envisioned that I would triumphantly shout to the MS Troll that attempts to hold me back that it couldn't stop me, it could only make me take a few detours.
Today, four months later, I would write that sentence differently. It looks like the pain and blurred vision are here to stay, and I certainly don't have the energy for any detours along my upcoming 13.1 miles, so my perspective of what victory looks like has changed.
But I'm still out to prove that multiple sclerosis can't stop me, even if it makes things harder.
Wish me luck.
You can bet I'll be blogging all about it in three weeks.
That's not actually true.
In fact, I signed up for my hometown Livermore half marathon the day after I finished last year's race, long before I was diagnosed with anything other than sore legs. Between the festive race-day atmosphere, the rolling green hills and vineyards the course winds through, and the staff of thirteen wineries pouring at the finish line (many of whom are my friends), Half Marathon Day is my favorite day on the Livermore calendar. It's a celebration of my city, coinciding with the end of the dark, rainy winter transitioning into our sunny spring.
I just really hope I get to be part of it this year.
When I was diagnosed with MS in November, and my legs started shaking without my asking them to, one of my first thoughts was whether or not I'd be able to run this race.
It seemed like a long shot.
Thirteen miles is hard when your body works just fine, and mine had developed the annoying habit of destroying itself from the inside. Deep down, I always suspected that I was my own worst enemy, and now I have and proven it conclusively.
But I needed a goal, I wasn't ready to give up the person I used to be, and I was already out $64 for the registration fee, so I was hoping I have at least one more race left in me.
I'll let you know.
But it looks promising. For most of November and December I felt nerve pain upon even attempting a light jog, and wondering what 13 miles would feel like. When I told my legs to move they often paused to think about it for a while before deciding whether to comply. The one time I ran something that almost resembled my old pace, I had pain and coordination issues for the next two weeks, including a dramatic fall on the stairs in my office foyer. No one saw it, which was a shame because it would have scored a perfect 10.
My energy was low. When I got overheated, I went completely blind in my left eye (generally after about a mile) and that issue continues even now.
Those are the issues I'm fighting against, but so far, I like to think I'm winning the battle. I fight the pain and frustration by imagining the joy of finishing 13.1 miles, and proving that while I have MS, it doesn't have me. I know that just like every other facet of our lives, a bad day can be followed by a better one, and the ups and downs aren't entirely within our control. We just have to do the best we can with the hand we're dealt.
I set a goal of beating my slowest prior half marathon time, to prove that I could still outrun a prior version of my able-bodied self. It sounded nice inside my head, I thought, but my legs have not always agreed.
At my worst moments, when I can't get off the couch, can't stay warm, can't cool down, or can't stop the random shooting pains throughout my left side, I wonder if I can do this. I have never given up hope, but plenty of times it began to feel like a pipe dream.
The day after Christmas, I had my own little Christmas miracle, as my symptoms started to improve. They haven't gone away, and they apparently never will, but I was able to slowly build my speed and endurance back despite the pain.
Somewhere along the way, I stopped hoping to beat my worst time and starting hoping I could beat my best. That shouldn't be physically possible at 39-years-old, and without fully functioning legs, but somehow it doesn't seem out of reach.
I ran 11 miles last week at a faster training pace than I've ever run, so on one hand, it looks promising that in three weeks I can do the same for a race of 13. On the other hand, I fell out of my office chair one day last week, so it isn't exactly a sure thing.
Back when I was less confident I could actually do this, my brothers offered to run this race with me. I don't think either is happy about it. On good days when I send out a text brag about my latest training effort (I tend not to mention the occasions when I fall out of my office chair), I get responses back to the effect that I've sentenced them to Cruel and Unusual Punishment by dragging them into this unmitigated torture. But I almost died doing a triathlon with them five years ago, and we ran a Half Marathon in hurricane conditions the following year to beat my brother's colon cancer, and I don't want to mess with a winning formula. Putting ourselves through near death experiences for the sake of our health has become a bit of a family tradition.
I'm sure it will be a good story, regardless, provided we all survive. My wife and niece (not the same person) are running the 5k that day to be part of the experience too.
I hope it's a fun day. I hope I can do it. I hope I can blow my old personal record away.
"I hope you're not setting yourself up for failure," a sympathetic voice said, when I mentioned my goal to run this race.
I responded that my training was on schedule, but deep inside, what I thought was that failure would have been refusing to try.
Back in November, in my first blog with MS, I longed for the day when my legs wouldn't hurt and my vision would return. I envisioned that I would triumphantly shout to the MS Troll that attempts to hold me back that it couldn't stop me, it could only make me take a few detours.
Today, four months later, I would write that sentence differently. It looks like the pain and blurred vision are here to stay, and I certainly don't have the energy for any detours along my upcoming 13.1 miles, so my perspective of what victory looks like has changed.
But I'm still out to prove that multiple sclerosis can't stop me, even if it makes things harder.
Wish me luck.
You can bet I'll be blogging all about it in three weeks.
Thursday, January 26, 2017
Multiple Sclerosis is the best Thing that ever Happened to Me
"Multiple Sclerosis is probably the best thing that ever happened to me. I appreciate life more, laugh when it might be inappropriate, cry when I want. I watch sunrises and sunsets that in the past I might have ignored. I love more. I share more. I own my disease, but ms will not define me. I will define ms."
-Rebecca Graziano (posted on an online ms patients' forum when asked to complete the sentence "Multiple sclerosis is...") (used with permission)
The vision in my left eye comes and goes throughout the day. In a good moment, I see well enough that I forget I have any issue with it at all. On a bad moment, it's like a have a cloud of fog directly in front of it. My left leg has been in constant pain for the last 17 days, and for seven of the nine weeks prior to that. My left hand often drops things, and yesterday I fell down the stairs at my office. I can't eat dairy, saturated fat, or most forms of protein. For me, this is what MS looks like even now, when it's in remission.
But please do me a favor: don't feel sorry for me. I've never felt this much joy in my life.
Sometimes when I run--and thank God I can still run--I start out with little energy. I go through the motions for three miles that are mostly level, until I hit a gigantic hill on the trail that forces my adrenaline to kick in. It become harder to go forward, but it also shakes me out of complacency, forcing me to push harder. The last time I ran it, I actually ran that uphill mile faster--better--than I had run the previous three. And even when the path leveled out a mile later, the adrenaline shot lasted to push me to a better pace than I'd run the first half of my run. The challenge shook me out of my doldrums into a better a run.
MS, for me, has been kind of like that hill.
Multiple Sclerosis has taught me so many things in the first 78 days. For one, I've learned that when you were born with a slight lisp, it's really hard to say the word "sclerosis." It seems a cruel trick that God couldn't at least bail me out of one issue or the other.
But that's not quite all.
I appreciate sunshine and beauty so much more than I used to, especially on the days I feel good enough to go out and enjoy it. I don't take those days for granted anymore. I couldn't tell you the last time I woke up thankful for the strength to get out of bed prior to my diagnosis. I get to do that often now.
My doctor thinks I have the "better" version of MS, the kind that goes into remission and doesn't outwardly show signs of progression beyond my current symptoms for months at a time, maybe even years. For a few weeks, it looked like I might have the other type, where the progression never stops. When I heard this good news last week, I burst into uncontrollable tears for the first time since my diagnosis. I get to live something like a normal life, and I get to appreciate every moment of it so much more, because I know all too well that it wasn't guaranteed. It's almost as if every moment I get to run, walk, travel, or work is a blessing I might not have had if life had worked out just a little bit differently.
Actually, it's exactly just that.
Last week I got to speak to a group of a couple hundred people about what MS has taught me. About how it's made me thankful for every good moment, and even more thankful for the bigger things that even the bad moments can't take away. No one would have listened to that message three months ago, and I wouldn't have even been in a place to give it.
For the past several years, I'd been a prisoner stuck in my own head, unable to forgive my personal failures, that I buckled under the pressure of my last high-profile job, and that neither my new job or life in general immediately fell neatly into place once we moved to California. It was a funk I couldn't quite break out of, no matter how hard I tried, as I couldn't find my way to make a difference in the world in my new life.
But when you're in a constant struggle for your continued existence, you don't have time for these internal debates any more. You forgive yourself for your past mistakes, and don't waste energy holding grudges against the people who let you down along the way. You stop taking your own strength for granted, and ask God, and loved ones, for more help along the way, deepening your relationships with both. In a weird way, the chains of your newfound limitations set you free.
Quick: assuming you still can: when's the last time you were thankful for the fact that you had vision in both your eyes? Or that you could walk to the bathroom? Or get out of bed at all, at least on a good day? Or that even on a bad day, that you aren't all alone?
Well, as long as there are still good days, and as long as there is still love, we all have something to be thankful for. I see that so much better now, even with only one working eye.
In my desperate moments, I still hope that someday I'll hit the peak of this hill I'm climbing and get to start running downhill. That I'll get to eat pizza again, see clearly out of my left eye, and move around without limitations. Medical science hasn't gotten there yet.
But when I pray, I don't often ask that God takes away my disease. I'm a better person for having had it. It's given me the freedom to define my life in such a better way than I ever would have without it.
-Rebecca Graziano (posted on an online ms patients' forum when asked to complete the sentence "Multiple sclerosis is...") (used with permission)
The vision in my left eye comes and goes throughout the day. In a good moment, I see well enough that I forget I have any issue with it at all. On a bad moment, it's like a have a cloud of fog directly in front of it. My left leg has been in constant pain for the last 17 days, and for seven of the nine weeks prior to that. My left hand often drops things, and yesterday I fell down the stairs at my office. I can't eat dairy, saturated fat, or most forms of protein. For me, this is what MS looks like even now, when it's in remission.
But please do me a favor: don't feel sorry for me. I've never felt this much joy in my life.
Sometimes when I run--and thank God I can still run--I start out with little energy. I go through the motions for three miles that are mostly level, until I hit a gigantic hill on the trail that forces my adrenaline to kick in. It become harder to go forward, but it also shakes me out of complacency, forcing me to push harder. The last time I ran it, I actually ran that uphill mile faster--better--than I had run the previous three. And even when the path leveled out a mile later, the adrenaline shot lasted to push me to a better pace than I'd run the first half of my run. The challenge shook me out of my doldrums into a better a run.
MS, for me, has been kind of like that hill.
Multiple Sclerosis has taught me so many things in the first 78 days. For one, I've learned that when you were born with a slight lisp, it's really hard to say the word "sclerosis." It seems a cruel trick that God couldn't at least bail me out of one issue or the other.
But that's not quite all.
I appreciate sunshine and beauty so much more than I used to, especially on the days I feel good enough to go out and enjoy it. I don't take those days for granted anymore. I couldn't tell you the last time I woke up thankful for the strength to get out of bed prior to my diagnosis. I get to do that often now.
My doctor thinks I have the "better" version of MS, the kind that goes into remission and doesn't outwardly show signs of progression beyond my current symptoms for months at a time, maybe even years. For a few weeks, it looked like I might have the other type, where the progression never stops. When I heard this good news last week, I burst into uncontrollable tears for the first time since my diagnosis. I get to live something like a normal life, and I get to appreciate every moment of it so much more, because I know all too well that it wasn't guaranteed. It's almost as if every moment I get to run, walk, travel, or work is a blessing I might not have had if life had worked out just a little bit differently.
Actually, it's exactly just that.
Last week I got to speak to a group of a couple hundred people about what MS has taught me. About how it's made me thankful for every good moment, and even more thankful for the bigger things that even the bad moments can't take away. No one would have listened to that message three months ago, and I wouldn't have even been in a place to give it.
For the past several years, I'd been a prisoner stuck in my own head, unable to forgive my personal failures, that I buckled under the pressure of my last high-profile job, and that neither my new job or life in general immediately fell neatly into place once we moved to California. It was a funk I couldn't quite break out of, no matter how hard I tried, as I couldn't find my way to make a difference in the world in my new life.
But when you're in a constant struggle for your continued existence, you don't have time for these internal debates any more. You forgive yourself for your past mistakes, and don't waste energy holding grudges against the people who let you down along the way. You stop taking your own strength for granted, and ask God, and loved ones, for more help along the way, deepening your relationships with both. In a weird way, the chains of your newfound limitations set you free.
Quick: assuming you still can: when's the last time you were thankful for the fact that you had vision in both your eyes? Or that you could walk to the bathroom? Or get out of bed at all, at least on a good day? Or that even on a bad day, that you aren't all alone?
Well, as long as there are still good days, and as long as there is still love, we all have something to be thankful for. I see that so much better now, even with only one working eye.
In my desperate moments, I still hope that someday I'll hit the peak of this hill I'm climbing and get to start running downhill. That I'll get to eat pizza again, see clearly out of my left eye, and move around without limitations. Medical science hasn't gotten there yet.
But when I pray, I don't often ask that God takes away my disease. I'm a better person for having had it. It's given me the freedom to define my life in such a better way than I ever would have without it.
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