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.
Monday, August 14, 2017
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.
Friday, December 16, 2016
What The Nativity Story Taught Me About My Multiple Sclerosis
This is probably a cliché, but last week’s episode of Saturday Night Live made me rethink the Christmas story.
The show’s final sketch depicted a manger scene, where Mary, disheveled and exhausted after giving birth to Jesus in a barn without medical assistance, became increasingly frustrated with Joseph. First, he invited a wandering group of random shepherds into their crowded space, then he invited in the wise men, and finally he asked Mary to serve everyone drinks.
Mary obliged, but, at least in the skit, she was not the least bit pleased with her husband, the strangers invading her privacy, or totality of her situation, entertaining strangers the night she gave birth in a pile of hay.
I don’t know how Mary really felt on that night in Bethlehem, but if she was frustrated at her situation, then she kind of had a point.
In the Bible story, Mary, who was mostly likely a teenage girl, is visited by the angel Gabriel and told she will give birth to the Son of God, who will come to bring healing into the world. Conveniently, Gabriel failed to mention anything about a barn.
In the Gospels’ telling, Jesus had a humble birth as God’s symbolism that true greatness is not caused by material comfort, and that God’s favor is not related to the privilege into which one was (or was not) born.
In retrospect, it’s a beautiful sentiment. But all Mary knew, on the first Christmas Eve, was that she would have to draft her choice of cattle to serve as her midwife.
“God forced me to have this baby,” she might have thought, “but He couldn’t even get me a doctor? And if not a doctor, how about at least a hotel room instead of a bed of straw? God is relying on me to deliver the savior of the world, but He is treating me like an animal!”
That’s probably what I would have thought. Imagine her emotions when she went into labor on Christmas Eve. First, she was probably giddy that she happened to be giving birth to Jesus on Christmas Day itself. I mean, what were the odds?
Then reality must have set in. When Mary first found out she was pregnant, she probably didn’t envision giving birth away from home, much less in a barn. She didn’t have a Western calendar porcelain manger scene to reference, so when she first felt a labor pain, she probably expected God would provide a traditional means for delivery. After all, If God could arrange a virgin birth, surely He could arrange a qualified medical professional to wander by and assist.
It must have been crushing to find out that no doctor, relative, or inn could make room for her when she most needed it, so she’d have to duck into a random barn and make do, like an animal. It must have felt like God started this story, but then lost interest midstream and moved on to another project.
Notwithstanding the cattle lowing nearby, she must have felt alone. At least in that moment, she must have felt abandoned by God.
I would have been angry.
I know this because, while I haven’t given birth to any messiahs this winter, lately I’ve sometimes felt like God dealt me a losing hand this holiday season. I lost vision in my left eye two days before my birthday and found out I probably had multiple sclerosis the day after it. I spent Thanksgiving Day on bedrest after a spinal tap, and now I find myself literally limping through the holidays. I say that literally, because my left leg is numb.
It’s hard to celebrate the season of comfort and joy when the most prominent thing you feel is pain. It’s difficult to have holiday cheer when your new dietary restrictions mean you can’t eat the good stuff at your office Christmas party, and you have to give away all the sweets you get as presents. It’s impossible to make New Year’s Resolutions for 2017, when your most pressing goal at year’s end is to still be able to walk unassisted.
It’s much easier to be mad at God when it feels like you’ve done the right things, but life still doesn’t go as planned. I wonder if Mary played also the “why me?” card. She did everything God asked her too, and ended up in a barn in the cold surrounded by animal poop. And even when she was done, she had to host an assortment of random strangers she wasn’t expecting, one of which brought her newborn baby funeral spices.
I try to remind myself that if Mary felt annoyed, it was because she didn’t yet know how her story would end. She probably didn’t know that her painful night in a cold barn would be memorialized as a symbol that God doesn’t care how big your parents’ house is. Mary couldn’t have understood that Jesus’ humble birth would foreshadow his life’s message that wealth and comfort were not really what’s important. She couldn’t have realized that her story would be told and people for thousands of years would be inspired by her willingness to roll with life’s punches, even when they didn’t make sense.
She also wouldn’t have foreseen that about two thousand years later, a man on another continent with multiple sclerosis would be heartened by the lesson in her story: that sometimes when life doesn’t seem fair in the moment, it’s because we don’t yet see the end of story.
Sunday, December 4, 2016
This Is Blogging My Spinal Tap
The online medical websites said that a spinal tap wasn't actually all that bad. I was naive enough to believe them. I'm glad I didn't know what I was getting myself into, but at least I can blog about it now.
Wednesday, November 23:
8:15: My wife is driving me to the hospital. I have a spinal tap scheduled to confirm my diagnosis of multiple sclerosis and maybe learn a little about its progression. A doctor will soon be sticking a needle into the protective sack surrounding my spine to collect fluid to be tested. The websites said that the local anesthetic blocks all the pain, and I should just expect to feel a little bit of pressure. The biggest problem, they say, is that for a small percentage of people the protective sack surrounding the spinal column doesn't seal, and the internal fluid leakage can cause a major headache. But if you take it easy for a couple days after the procedure, they say, you should be fine. That's what the websites say. I have the feeling no one writing articles for WebMD has ever actually had to have one of these.
8:16: I'm not nervous, just anxious to get the procedure over with so I can begin my Thanksgiving break. We turn a corner, and suddenly there's a giant rainbow straddling the freeway, something I've absolutely never seen before. I'm hoping this is a good omen, and not a symbol of reassurance I should need to recall on the other side of my impending doom. My hope, it would turn out, was not well founded.
8:30: I check in and get my hospital wristband with my name and vital info. I'm asked to verify that it is correct. Soon a nurse is walking me back to my waiting room, asking again if my wristband is correct as we walk.
9:00: I'm in my hospital gown and the doctor is in to go over the procedure with me, and also to ask if my wristband is correct. I tell him my neurologist had said that I should drink lots of caffeine to help my blot clot and prevent the post-operative headache, and he says that's an old wives' tale. I wasn't allowed any coffee before the procedure, so I plan to try it anyway.
9:05: A nurse asks if the information on my wrist band is accurate. I really just want to mess with her at this point and say no.
9:07: The nurse tells me I should be sure to drink lots of caffeine after the procedure so that my blood will clot.
9:30: My hospital room has a tv. It seems weird to watch Judge Mathis in the minutes before someone opens my spinal canal, but I'm getting kind of bored. The nurse tells me that she makes really good tea, and she'll be glad to give me some after my procedure so that I won't get the headache. I don't like tea, but her personal pride is clearly at stake so I smile and nod.
9:45: The nurse comes to roll me into the operating room, after, of course, asking about my wrist band. The hospital is preoccupied with my identity, but took my word for it when they asked my weight without putting me on a scale. Since they are about to give me an indefinite amount of anesthetic, this seems like maybe this should have been important.
9:55: We reach the emergency room, and my wife returns to the lobby. The nurse tells me that if I get a headache after the procedure, I should call my doctor get a referral to come back in. "Tomorrow is Thanksgiving," I remind her. "No one will be at her office until Monday."
"Oh yeah," she says casually. "You should just come to the emergency room in that case."
10:10: The doctor appears, and asks me if my wristband is correct.
10:11: The doctor puts the coldest liquid known to humanity on my back to sterilize me. A noticeable pain comes a moment later as the anesthetic goes in. I was promised this was the worst part.
10:15: The first needle exits. A disconcertingly short period of time passes before I feel another. The doctor tells me that I will feel some pressure. I feel that and much more. "Ok, I think to myself. That was a bit sharp, but it's in now so that should be the worst part...
10:16: UHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH!!!!!!!!!!!!!!!!!!!!!!!!!!!
The doctor pulls the needle back out, as I gasp loudly. It was a pain so sharp I couldn't even scream; The worst I've ever felt. "Let's get you some more anesthetic," he says.
10:18: I get another injection of pain killer. I'm hoping the doctor will give this one a little while to set in before digging around my spine. A few minutes later he goes in again, with a nurse holding onto my leg, no doubt checking my wristband as she holds me down.
10:25: The injection was not as bad this time, but the pain is starting to spread down my legs. The doctor tells me this is normal, as the nerve endings are all connected. A pressure builds inside of me. It feels like someone is literally sucking the life out of me. Which is kind of what is actually happening.
A few minutes later: The needles goes out, right about at my breaking point. "We need to get a little bit more fluid so they can complete the tests," he says. "We need to change locations."
I whimper.
10:30: I gasp again as the needles hits a new location, not quite as bad as the first insertion, but worse than the second. He tells me we're almost done. I debate telling him I absolutely can't take another second. Right as I'm about to announce it, he tells me we're done.
10:45: I'm wheeled back to my hospital room, and there are tears in one of my eyes. But my wife has coffee.
11:00: The nurse asks if I'd rather have some of her homemade tea. "Get over yourself," I tell her in my head. But in real life, I say ok, in an attempt to give her life meaning. She emphasizes the importance of drinking caffeine. Then she asks if she can order me lunch from the cafeteria, excitedly proclaiming that lasagna and cookies are on the menu.
"MS patients aren't supposed to have dairy or saturated fat," I remind her.
12:30: I order a sandwich, drink some tea, and soon they tell me it's time to go. The only problem is that I can barely walk due to what they just did to me. I ask to just make a test run to the bathroom before committing to anything bigger. As I limp gingerly down the hall, the nurse asks my wife, "Does he always walk like that?"
"No," she says. But they just stuck a needle in his spine and dug around for awhile.
1:00: The nurses put me in a wheelchair and being to wheel me to the car. One of them asks if I'd like to take her tea with me for the road. "There's nothing special about your tea," I tell her, forgetting to say the words out loud. In other words, I just smile and nod. She grabs my tea, and bangs me into some furniture while wheeling me along the hallways. "I thought these kind of follies only happened in movies," I said, actually saying it outloud this time. As I load into the car, the nurse reminds me to drink lots of caffeine to keep the headache away. I'm pretty sure she checked my wristband one final time, just to ensure they weren't letting the wrong person go.
I get home and lie on the couch. We download the movie "This Is Spinal Tap" because I had never seen it and will never have a more appropriate occasion. I'm surely never agreeing to do this again.
PS: In the ensuing days, I drank lots of coffee and stayed mostly flat on my back on the couch. I still got an excruciating spinal headache on Thursday when I sat up, but it seemed to get slightly better through the weekend. It got worse when I went to work on Monday, and I ended up in the emergency room Tuesday afternoon, getting a "blood patch"--an injection of blood into my spine to clot the leakage, a procedure perhaps chosen because no nurse was available to make me any tea. But the procedure worked, and after six days, I was finally able to stand without a train ramming into my head (although my back hurt for a couple days).
When I first was diagnosed with multiple sclerosis, it seemed a fate beyond what I could bare. But after six days of not being able to stand upright for reasons not directly related to the disease itself, I just wanted to get back on my feet so I could go back to fighting it. My head is better now, and it's been a good couple of days since I've been back on my feet. I'm back to living with the familiar exhaustion, leg pain, and blurred vision. But I went for a run in the vineyards yesterday. My alma mater won a football championship. I had an amazing glass of wine. And when I checked in at the ER registration desk, they even made me a new wristband, and all my information was correct. If only I knew where to get a glass of tea.
Wednesday, November 23:
8:15: My wife is driving me to the hospital. I have a spinal tap scheduled to confirm my diagnosis of multiple sclerosis and maybe learn a little about its progression. A doctor will soon be sticking a needle into the protective sack surrounding my spine to collect fluid to be tested. The websites said that the local anesthetic blocks all the pain, and I should just expect to feel a little bit of pressure. The biggest problem, they say, is that for a small percentage of people the protective sack surrounding the spinal column doesn't seal, and the internal fluid leakage can cause a major headache. But if you take it easy for a couple days after the procedure, they say, you should be fine. That's what the websites say. I have the feeling no one writing articles for WebMD has ever actually had to have one of these.
8:16: I'm not nervous, just anxious to get the procedure over with so I can begin my Thanksgiving break. We turn a corner, and suddenly there's a giant rainbow straddling the freeway, something I've absolutely never seen before. I'm hoping this is a good omen, and not a symbol of reassurance I should need to recall on the other side of my impending doom. My hope, it would turn out, was not well founded.
8:30: I check in and get my hospital wristband with my name and vital info. I'm asked to verify that it is correct. Soon a nurse is walking me back to my waiting room, asking again if my wristband is correct as we walk.
9:00: I'm in my hospital gown and the doctor is in to go over the procedure with me, and also to ask if my wristband is correct. I tell him my neurologist had said that I should drink lots of caffeine to help my blot clot and prevent the post-operative headache, and he says that's an old wives' tale. I wasn't allowed any coffee before the procedure, so I plan to try it anyway.
9:05: A nurse asks if the information on my wrist band is accurate. I really just want to mess with her at this point and say no.
9:07: The nurse tells me I should be sure to drink lots of caffeine after the procedure so that my blood will clot.
9:30: My hospital room has a tv. It seems weird to watch Judge Mathis in the minutes before someone opens my spinal canal, but I'm getting kind of bored. The nurse tells me that she makes really good tea, and she'll be glad to give me some after my procedure so that I won't get the headache. I don't like tea, but her personal pride is clearly at stake so I smile and nod.
9:45: The nurse comes to roll me into the operating room, after, of course, asking about my wrist band. The hospital is preoccupied with my identity, but took my word for it when they asked my weight without putting me on a scale. Since they are about to give me an indefinite amount of anesthetic, this seems like maybe this should have been important.
9:55: We reach the emergency room, and my wife returns to the lobby. The nurse tells me that if I get a headache after the procedure, I should call my doctor get a referral to come back in. "Tomorrow is Thanksgiving," I remind her. "No one will be at her office until Monday."
"Oh yeah," she says casually. "You should just come to the emergency room in that case."
10:10: The doctor appears, and asks me if my wristband is correct.
10:11: The doctor puts the coldest liquid known to humanity on my back to sterilize me. A noticeable pain comes a moment later as the anesthetic goes in. I was promised this was the worst part.
10:15: The first needle exits. A disconcertingly short period of time passes before I feel another. The doctor tells me that I will feel some pressure. I feel that and much more. "Ok, I think to myself. That was a bit sharp, but it's in now so that should be the worst part...
10:16: UHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH!!!!!!!!!!!!!!!!!!!!!!!!!!!
The doctor pulls the needle back out, as I gasp loudly. It was a pain so sharp I couldn't even scream; The worst I've ever felt. "Let's get you some more anesthetic," he says.
10:18: I get another injection of pain killer. I'm hoping the doctor will give this one a little while to set in before digging around my spine. A few minutes later he goes in again, with a nurse holding onto my leg, no doubt checking my wristband as she holds me down.
10:25: The injection was not as bad this time, but the pain is starting to spread down my legs. The doctor tells me this is normal, as the nerve endings are all connected. A pressure builds inside of me. It feels like someone is literally sucking the life out of me. Which is kind of what is actually happening.
A few minutes later: The needles goes out, right about at my breaking point. "We need to get a little bit more fluid so they can complete the tests," he says. "We need to change locations."
I whimper.
10:30: I gasp again as the needles hits a new location, not quite as bad as the first insertion, but worse than the second. He tells me we're almost done. I debate telling him I absolutely can't take another second. Right as I'm about to announce it, he tells me we're done.
10:45: I'm wheeled back to my hospital room, and there are tears in one of my eyes. But my wife has coffee.
11:00: The nurse asks if I'd rather have some of her homemade tea. "Get over yourself," I tell her in my head. But in real life, I say ok, in an attempt to give her life meaning. She emphasizes the importance of drinking caffeine. Then she asks if she can order me lunch from the cafeteria, excitedly proclaiming that lasagna and cookies are on the menu.
"MS patients aren't supposed to have dairy or saturated fat," I remind her.
12:30: I order a sandwich, drink some tea, and soon they tell me it's time to go. The only problem is that I can barely walk due to what they just did to me. I ask to just make a test run to the bathroom before committing to anything bigger. As I limp gingerly down the hall, the nurse asks my wife, "Does he always walk like that?"
"No," she says. But they just stuck a needle in his spine and dug around for awhile.
1:00: The nurses put me in a wheelchair and being to wheel me to the car. One of them asks if I'd like to take her tea with me for the road. "There's nothing special about your tea," I tell her, forgetting to say the words out loud. In other words, I just smile and nod. She grabs my tea, and bangs me into some furniture while wheeling me along the hallways. "I thought these kind of follies only happened in movies," I said, actually saying it outloud this time. As I load into the car, the nurse reminds me to drink lots of caffeine to keep the headache away. I'm pretty sure she checked my wristband one final time, just to ensure they weren't letting the wrong person go.
I get home and lie on the couch. We download the movie "This Is Spinal Tap" because I had never seen it and will never have a more appropriate occasion. I'm surely never agreeing to do this again.
PS: In the ensuing days, I drank lots of coffee and stayed mostly flat on my back on the couch. I still got an excruciating spinal headache on Thursday when I sat up, but it seemed to get slightly better through the weekend. It got worse when I went to work on Monday, and I ended up in the emergency room Tuesday afternoon, getting a "blood patch"--an injection of blood into my spine to clot the leakage, a procedure perhaps chosen because no nurse was available to make me any tea. But the procedure worked, and after six days, I was finally able to stand without a train ramming into my head (although my back hurt for a couple days).
When I first was diagnosed with multiple sclerosis, it seemed a fate beyond what I could bare. But after six days of not being able to stand upright for reasons not directly related to the disease itself, I just wanted to get back on my feet so I could go back to fighting it. My head is better now, and it's been a good couple of days since I've been back on my feet. I'm back to living with the familiar exhaustion, leg pain, and blurred vision. But I went for a run in the vineyards yesterday. My alma mater won a football championship. I had an amazing glass of wine. And when I checked in at the ER registration desk, they even made me a new wristband, and all my information was correct. If only I knew where to get a glass of tea.
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