It was a normal Tuesday, the kind that seemed to exist just to take up space on the calendar between Monday and the weekend. And then, as the story so often goes, it all went wrong the moment I stopped to take a vitamin.
7:03: I have two minutes until I need to leave for work. I open the back to door to leave, when I remember that I forgot to take my Vitamin D. I would just leave, but Vitamin D, for reasons no one understands, helps people like me with MS manage their symptoms. I should go ahead and take it, so I don't forget.
7:06: I crank up the car, one minute late. I drive to the subway station to take the train to work, and the parking garage fills up by about 7:30. It's about a 20-minute drive, and try to get there by 7:25, just to be safe. I should be parked by 7:26, so it should be fine.
7:23: I pull in to the seven-level garage. My commute to work involves a 15-minute drive to the subway station, a five-minute drive to top level of the parking garage, a 50-minute train ride into San Francisco, and then a 7-minute walk from the station to my office. The whole process takes about an hour and a half if all goes well.
Today it did not.
7:27: The garage is unnervingly full, but I see a handful of spaces left. I should be fine, but the cars in front of me are taking their sweet time pulling into open spots. Meanwhile, cars coming from the other direction are filling them fast.
7:28: There are two spots left. The car in front of me is taking one of them.
7:29: And a car coming from the other direction just took the other.
7:30: Crap. But there is no need to panic. This has happened before, and the next station is only about five minutes away. Its parking garage usually doesn't fill up until about 7:45. I drive over, trying to move quickly to beat all the other cars who will soon have the same idea.
7:41: This garage is full too. But there is another garage on the other side of the freeway.
7:47: The car two spots ahead of me takes the last spot in the third garage. I've never seen all three garages of these garages full before I arrived. I've only worked in San Francisco a few months, and I have no idea what the next option is.
7:49: There's a shopping center across the street from the train station. I see people parking there and walking over, but I also see signs everywhere saying that those who do so will be towed. I'm scared to try it, so I drive over to the next station.
7:59: This station doesn't have a garage, but instead a large maze-like parking lot featuring a lot of dead ends. Its a traffic nightmare as cars buzz through and turn around. There are no spots to be had and about 100 cars circling, whose drivers seem to be feeling as frazzled as I am.
8:00: The drive to San Francisco takes about 45 minutes on a weekend, but I've never driven to work on a weekday the morning because I know the traffic is awful. According to the news, cars usually spend half an hour just waiting in line at the toll booth to take the bridge over the bay. But today, I'm going to have to try it.
8:10: It occurs to me that I probably should have stopped to use the bathroom before I got back on the freeway. MS causes many people, myself included, to go to the bathroom frequently and urgently. All the Vitamin D in the world doesn't prevent that.
8:20: As I fight through stop-and-go traffic, I really hate myself for not going to the bathroom. This is not going to be a fun drive in, and I'm no longer talking about the traffic. But I really don't want to stop because I'm already going to be late.
8:30: I'm somewhere in Oakland. Traffic is crawling. My bladder is screaming. I want to die.
8:33: I'm just going to have to get off on the next exit.
8:35: I get off and discover the exit has absolutely no services. But at least I wasted five minutes figuring that out. There are no businesses around, so I consider just pulling over to the side of the road to do my business, but I picture a newspaper article titled, "Local Attorney Arrested for Peeing by Freeway," and I can't bring myself to do it.
8:40: The next exit is in a horrible part of town and has one extremely sketchy looking gas station. But if that station has a toilet, it will forever hold a special place in my heart.
8:41: There are lots of sketchy looking people just hanging out in front of the gas station at 8:41 on a Tuesday morning. I wonder what has to happen in one's life to arrive in that position. But mostly I wonder if there's a bathroom.
8:42: Success! Oh thank God. That was excruciating. And the bathroom was even slightly cleaner than the condition of the station would have suggested. I have a new love for this part of Oakland. Maybe I'll come back to this wonderful place in my spare time this weekend.
8:45: I don't need gas, but I had to buy something to use the facilities so I handed the cashier ten bucks for gas to get a restroom key. I fill up as quickly as I can. It's early but I'm in a bad part of town that I don't know very well, and there already seems to be a lot of activity around me.
8:46: As I replace the gas nozzle, hop in the car, and hurry to leave, the driver of another car pulls in front of me. He signals for me to roll down my window.
8:48: My heart races. Part of me wants to just accelerate and get out of dodge, but I fear that might escalate whatever is about to happen. I'm already in the driver's seat of cranked car, so I can still take off quickly if I need to. And while I don't relish the thought of talking to strangers waiving at me in a hard-luck area of any demographic composition, I also don't want to be the white guy who flees just because a twenty-something year old minority tries to talk to me.
8:49: I roll down my window, expecting to be asked if I have any spare gas money. My car is modest, but it's nicer than the others here, so I am probably a natural target.
8:49: "Excuse me," the young man says. "You left your gas cap open."
8:50: I thank him just a little too warmly, because I feel terrible about myself. I've never felt more like a privileged, prejudiced jerk.
9:00: I'm back on the freeway, and traffic is still crawling. I packed my chicken-guacamole sandwich two hours ago, and it's going to spoil by the time I get to the office. It's 9:00 a.m. on a Tuesday, and I've already today I've managed to ruin a perfectly good sandwich and prove myself a racist.
9:05: Sitting in traffic, I eat my sandwich and the yogurt I packed for lunch. Otherwise I just have to throw them away whenever I finally get to the office, which at this rate might not be until Friday.
9:20: I'm not even across Oakland yet. I pull up my traffic app to see what time I'll actually get to my office on the other side of the bay. It says 10:45.
9:25: I turn around to go back toward home.
9:35: Really, I do. A batch of parking spots at my train station are reserved for monthly pass holders (I've been on the waiting list to become one for over a year), but whatever spaces are not filled by 10 become open to the public. I can drive back to the station, and claim one of those spots if I get in right at 10. If I do, I can ride in and be at the office by 11, which is about the same time I'll get there if I continue to fight through this traffic.
9:45: Now I'm caught in traffic getting back to my station as well. I'm not going to make it by 10. I'm pretty sure this is what Hell must be.
9:48: I won't get back to my subway station by 10, but I can get to the station with the weird maze of dead ends by then. I noticed that station also had some monthly reserved spots that open at 10. I get there at 9:54, and I hover over a reserved spot until 9:58. There being no parking enforcement officer in sight, I walk to catch the train.
10:58: I finally get to the office, almost four hours after I left home. Along the way, I almost used the bathroom on myself, I was wrongly suspicious of a nice young man, and I had to eat lunch at 9:00 a.m. It's been quite a day already.
I'm exhausted and ready to turn around and go home, but technically I should stay late to make up for not arriving until late morning.
And the worst part is that I know I'll have to do it all again tomorrow.
Saturday, May 18, 2019
Monday, March 18, 2019
Running Diary: Running a Half Marathon with MS and a Not-Quite-Healed Broken Kneecap
It's 5 minutes to the beginning of the Livermore Half Marathon, and I'm near the start line with two major problems.
One, I've lost my chewable energy tablets somewhere between the car and the coffee shop bathroom. I've retraced my steps twice and can't find them. I will run out of gas about mile 10 without some nutrition to get me through the whole 13.1. But the race is about to start, so I just have to hope the volunteers will hand some out along the way.
My second problem is slightly more important. Last week I reaggravated the knee I broke two years ago. I haven't run since then. Until yesterday, I couldn't even walk without a limp.
The smart thing would probably to sit this one out, to call it until next time. But after breaking my knee in a nasty fall two years ago, this is the first time I've been able to try something like this. I've been training for three months for this, my annual hometown race. Also, I have MS.
Multiple sclerosis is a disease where the body's immune system attacks its own nerves, potentially leading to paralysis and all kinds of other problems. There is no cure, but there are medications to slow down the unpredictable progression. In short, there's no guarantee I'll ever get to try this again. Besides, I raised $2100 toward research for a cure for MS through people sponsoring me for this race. I can't let them down.
It's going to take a whole lot of pain to take this moment away from me. Even if I run out of energy at mile 11.
Here's what happened:
7:29 a.m.: Usually, races start a few minutes late. The organizers double-check to make sure the course is clear. They play the national anthem. They make some announcements. None of that happened here, and the emcee just started a ten-second countdown and it isn't even 7:30. The good news is that my knee feels ok, at least when I walk around. The bad news is that I was a little late to the party because I was looking for my energy tablets, so I had to hop over a barricade just to get into race. Also, my GPS watch hasn't picked up a signal yet. It has exactly 10 seconds...
7:29:15: I have a signal just in time. We're off.
7:32: There's no immediate pain in my knee. I breathe a sigh of relief. But not too hard, because I'm going to need all the oxygen I can get.
7:34: My first mile is filled with dodging slowpokes who for some reason wanted to start near the front of the race. I try not to waste energy running around people at the start of races, but in a couple instances people are almost walking from the start, so I have no choice.
7:38: The forecast called for a small chance of rain, which creates a dilemma. I usually have to run with sunglasses because MS causes me to go completely blind in my left eye when I get hot (historical note: before spinal taps, people suspected of having MS were thrown in hot tubs. If they went blind, they were diagnosed. Having been through a spinal tap, I don't know why they ever went away from the hot tub method).
I notice my running-induced blindness less if I have sunglasses on, so I wear them regardless of the weather. But they don't come with windshield wipers.
7:42: Sunglasses off. It's lightly raining.
7:58: Somewhere about mile 3.5 the sunglasses go back on. The sun is out, and suddenly bright. My knee is holding up, and I'm feeling good. I say a prayer of thanks. It's been so long since I've been able to do this.
8:05: Usually one of the highlights of race day are the crazy signs spectators have. Messages like "Worst Parade Ever" and "If Brittany can survive 2007, you can survive this" are among the highlights. I also fondly remember "Go Dan! Don't poop your pants!" from a prior year. I see one that says "I Bet You Thought You Were Signing Up for A Rum, not a Run."
8:17: I approach an aide station for some water at the 6 mile mark. I make eye contact with a volunteer, as is the protocol, and go to grab a drink mid-stride. Unfortunately, the person in front of me decided to grab her water and just stop right in front of me. I collide into her, fairly hard. She looks angry as though this was somehow my fault. I collect myself and keep going and she continues to stand there and block the path. It looks like maybe she knows a volunteer, and she picked a really bad spot for social hour.
8:33: Finally at mile 8 volunteers hand out an energy gel. I take one, expecting to grab another at mile 10. And no one stopped in front of me at this station.
8:41: My time has been pretty good so far. I'm just about on pace to set a new personal record, but mile 9 is steep uphill climb that usually comes close to killing me. I feel strong climbing it this time, but my time was not very good. I need to get about 3 more energy gels at mile 10.
8:49:06: There's no gel at mile 10, just water and a sports drink. I go to grab the latter, just as another runner decides to grab one. He stops to drink it in the middle of the course.
8:49:08: I crash into him, spilling half my drink on his backside. Why are people stopping on the course????? Unless you're hurt, or think you're in last place, why would you stop in the middle of the race path? What do people expect to happen when they suddenly stop directly in front of an aid station that others also need to get to? I apologized for running into both people I crashed into, but honestly, they both kinda deserved it.
8:57: I'm on to mile 11, and my watch reflects what I feel: I'm out of gas. I'm not going to set any records this race, but at least my body is not going to break down. Two years ago at this point, my left leg almost stopped working. This time, I'm just tired. This is progress, in a certain way, but I really wish I had some energy tablets.
9:04: Race exhaustion creates a special type of incoherence. At a certain point, the body is working so hard that the mind can no longer think of anything but survival. I lose the ability to read signs in the crowd or to comprehend the music in my headphones.
I check the distance on my watch every few seconds counting down to the finish line. I just need to finish. I have no idea, however, where the finish line actually will be. The races mile markers have either been missing or comically incorrect the first twelve miles. I hit what the race marked as "Mile 6" after 5.8 miles, but didn't hit "Mile 7" until 7.2. Mile 8 was at 7.78. There was no Mile 5 or Mile 11 sign at all.
9:12: There was also no Mile 13 sign. But at least there was also no one stopping to look at it for me to bump into.
9:14: I'm back in downtown Livermore. There's one more turn, and I'll be at the finish line, having completed my first race in two years. I needed crutches, a cane, or a knee brace for 18 months after my fall. My physical therapist told me MS might keep my muscles from ever rebounding enough to be able to fully walk again, much less run. I wasn't sure this day would ever come.
9:16: There's a toddler at the last turn, offering high fives to runner before the home stretch. I don't usually take any detours during races. 13.1 miles is long enough. But I see him, and his enthusiasm moves me. Literally. I run over to slap his hand.
9:17: As I hit the home stretch, I see my wife and some friends standing near the finish line. I point up to the sky for my finish line picture. I'm so thankful. I needed all the help I could get for this one, but I did it!
My official time was 1:47:55 seconds. That time was 30 seconds slower than my best ever, but roughly in the middle of the 8 races I've completed. In other words, my time was right about normal for me. After two years in exile, it was perfect.
28 months ago I was newly diagnosed with MS and in tears on the same running trail . In my first run-post MS diagnosis, I was half blind and my legs wobbled underneath me in a way that felt terrifying.
"You can't stop me," I screamed into the wind, but I was crying because deep down, I wasn't sure I believed it. Still, I vowed that while MS might make me take some detours, it wouldn't keep me from moving forward.
Today, I met my promise. It took 34 physical therapy sessions, and way more time and leg workouts than I care to remember, but my detour finally ended. I took another small one to high five a kid to celebrate the finish, but through it all, I kept going forward.
Even if the runner in front of me stopped directly in my way.
One, I've lost my chewable energy tablets somewhere between the car and the coffee shop bathroom. I've retraced my steps twice and can't find them. I will run out of gas about mile 10 without some nutrition to get me through the whole 13.1. But the race is about to start, so I just have to hope the volunteers will hand some out along the way.
My second problem is slightly more important. Last week I reaggravated the knee I broke two years ago. I haven't run since then. Until yesterday, I couldn't even walk without a limp.
The smart thing would probably to sit this one out, to call it until next time. But after breaking my knee in a nasty fall two years ago, this is the first time I've been able to try something like this. I've been training for three months for this, my annual hometown race. Also, I have MS.
Multiple sclerosis is a disease where the body's immune system attacks its own nerves, potentially leading to paralysis and all kinds of other problems. There is no cure, but there are medications to slow down the unpredictable progression. In short, there's no guarantee I'll ever get to try this again. Besides, I raised $2100 toward research for a cure for MS through people sponsoring me for this race. I can't let them down.
It's going to take a whole lot of pain to take this moment away from me. Even if I run out of energy at mile 11.
Here's what happened:
7:29 a.m.: Usually, races start a few minutes late. The organizers double-check to make sure the course is clear. They play the national anthem. They make some announcements. None of that happened here, and the emcee just started a ten-second countdown and it isn't even 7:30. The good news is that my knee feels ok, at least when I walk around. The bad news is that I was a little late to the party because I was looking for my energy tablets, so I had to hop over a barricade just to get into race. Also, my GPS watch hasn't picked up a signal yet. It has exactly 10 seconds...
7:29:15: I have a signal just in time. We're off.
7:32: There's no immediate pain in my knee. I breathe a sigh of relief. But not too hard, because I'm going to need all the oxygen I can get.
7:34: My first mile is filled with dodging slowpokes who for some reason wanted to start near the front of the race. I try not to waste energy running around people at the start of races, but in a couple instances people are almost walking from the start, so I have no choice.
7:38: The forecast called for a small chance of rain, which creates a dilemma. I usually have to run with sunglasses because MS causes me to go completely blind in my left eye when I get hot (historical note: before spinal taps, people suspected of having MS were thrown in hot tubs. If they went blind, they were diagnosed. Having been through a spinal tap, I don't know why they ever went away from the hot tub method).
I notice my running-induced blindness less if I have sunglasses on, so I wear them regardless of the weather. But they don't come with windshield wipers.
7:42: Sunglasses off. It's lightly raining.
7:58: Somewhere about mile 3.5 the sunglasses go back on. The sun is out, and suddenly bright. My knee is holding up, and I'm feeling good. I say a prayer of thanks. It's been so long since I've been able to do this.
8:05: Usually one of the highlights of race day are the crazy signs spectators have. Messages like "Worst Parade Ever" and "If Brittany can survive 2007, you can survive this" are among the highlights. I also fondly remember "Go Dan! Don't poop your pants!" from a prior year. I see one that says "I Bet You Thought You Were Signing Up for A Rum, not a Run."
8:17: I approach an aide station for some water at the 6 mile mark. I make eye contact with a volunteer, as is the protocol, and go to grab a drink mid-stride. Unfortunately, the person in front of me decided to grab her water and just stop right in front of me. I collide into her, fairly hard. She looks angry as though this was somehow my fault. I collect myself and keep going and she continues to stand there and block the path. It looks like maybe she knows a volunteer, and she picked a really bad spot for social hour.
8:33: Finally at mile 8 volunteers hand out an energy gel. I take one, expecting to grab another at mile 10. And no one stopped in front of me at this station.
8:41: My time has been pretty good so far. I'm just about on pace to set a new personal record, but mile 9 is steep uphill climb that usually comes close to killing me. I feel strong climbing it this time, but my time was not very good. I need to get about 3 more energy gels at mile 10.
8:49:06: There's no gel at mile 10, just water and a sports drink. I go to grab the latter, just as another runner decides to grab one. He stops to drink it in the middle of the course.
8:49:08: I crash into him, spilling half my drink on his backside. Why are people stopping on the course????? Unless you're hurt, or think you're in last place, why would you stop in the middle of the race path? What do people expect to happen when they suddenly stop directly in front of an aid station that others also need to get to? I apologized for running into both people I crashed into, but honestly, they both kinda deserved it.
8:57: I'm on to mile 11, and my watch reflects what I feel: I'm out of gas. I'm not going to set any records this race, but at least my body is not going to break down. Two years ago at this point, my left leg almost stopped working. This time, I'm just tired. This is progress, in a certain way, but I really wish I had some energy tablets.
9:04: Race exhaustion creates a special type of incoherence. At a certain point, the body is working so hard that the mind can no longer think of anything but survival. I lose the ability to read signs in the crowd or to comprehend the music in my headphones.
I check the distance on my watch every few seconds counting down to the finish line. I just need to finish. I have no idea, however, where the finish line actually will be. The races mile markers have either been missing or comically incorrect the first twelve miles. I hit what the race marked as "Mile 6" after 5.8 miles, but didn't hit "Mile 7" until 7.2. Mile 8 was at 7.78. There was no Mile 5 or Mile 11 sign at all.
9:12: There was also no Mile 13 sign. But at least there was also no one stopping to look at it for me to bump into.
9:14: I'm back in downtown Livermore. There's one more turn, and I'll be at the finish line, having completed my first race in two years. I needed crutches, a cane, or a knee brace for 18 months after my fall. My physical therapist told me MS might keep my muscles from ever rebounding enough to be able to fully walk again, much less run. I wasn't sure this day would ever come.
9:16: There's a toddler at the last turn, offering high fives to runner before the home stretch. I don't usually take any detours during races. 13.1 miles is long enough. But I see him, and his enthusiasm moves me. Literally. I run over to slap his hand.
9:17: As I hit the home stretch, I see my wife and some friends standing near the finish line. I point up to the sky for my finish line picture. I'm so thankful. I needed all the help I could get for this one, but I did it!
My official time was 1:47:55 seconds. That time was 30 seconds slower than my best ever, but roughly in the middle of the 8 races I've completed. In other words, my time was right about normal for me. After two years in exile, it was perfect.
28 months ago I was newly diagnosed with MS and in tears on the same running trail . In my first run-post MS diagnosis, I was half blind and my legs wobbled underneath me in a way that felt terrifying.
"You can't stop me," I screamed into the wind, but I was crying because deep down, I wasn't sure I believed it. Still, I vowed that while MS might make me take some detours, it wouldn't keep me from moving forward.
Today, I met my promise. It took 34 physical therapy sessions, and way more time and leg workouts than I care to remember, but my detour finally ended. I took another small one to high five a kid to celebrate the finish, but through it all, I kept going forward.
Even if the runner in front of me stopped directly in my way.
Wednesday, February 6, 2019
13.1 Miles to Finish MS
The hardest thing I've ever had to deal with wasn't living with multiple sclerosis. It was living with MS and a broken leg.
MS gives me more issues that I can quickly describe, but I've managed ok thus far against just it. Add in a broken kneecap to the mix, and life gets more complicated.
Combine MS with a broken kneecap that defied medical science in its steadfast and inexplicable refusal to heal, and you'll begin to get the picture of my last 21 months.
I fell on a dark Portland sidewalk in May 2017. I tore my jeans and it hurt. Sometimes people look at me incredulously when I tell them I broke my knee by falling, and they and ask me how I fell.
I have MS, I remind them.
And also it was dark out and I didn't see the little curb cut on the sidewalk that allowed people in wheelchairs to cross the street. I guess you could say that it was that particular disability accommodation, combined with my own disability, that was my literal downfall.
I walked through the Portland airport just fine the next day as I returned from a work trip. I was thankful the damage wasn't worse. It was mildly uncomfortable by the time I got to Oakland, but I made it home just fine. Two days later I had a trip to Japan scheduled, and it looked like I would be ok.
The next day was noticeable worse, but I could walk. I wondered whether to cancel the trip, but I was afraid the swelling would impede any type of reliable medical evaluation so early on.
So I bought the bulkiest knee brace I could find and hobbled my way onto the plane, hoping that the injury would be just a sprain that would get better after a few days.
Instead, things got worse for a week until I got home.
I went to the emergency room the day after I got back. The flustered doctor there, who looked about 14, told me it was just a bruise and it would be fine in 10 days. When I told Doogie Howser it had already been 10 days and I couldn't walk a step, he told me to go see a specialist.
It would be the first drop in a sea of misdiagnoses to come.
The specialist didn't see a break on the X-ray, but he referred me for an MRI. The MRI showed a microscopic fracture, so small that it's colloquially known as a bone bruise. "Six-to-eight weeks and you'll be fine," he told me.
If only.
The first time I walked without crutches was about six weeks later, after my physical therapist re-taught me how to walk. I thought the worst was behind me. But one Sunday in July I walked too many steps in a museum and my knee gave out again.
I was back on crutches for weeks.
The same pattern continued for the next eight months. I'd get better, put away the crutches, and then take one step too many at Walgreen's and need mobility assistance for weeks. If I moved from 2.7 to 2.9 mph on the gravity assisted treadmill at PT, I might overdo it and be back on my cane. If I parked too far from the entrance to the store, all bets were off.
Neither my doctor nor my PT could explain it.
The same PT who taught me how to walk warned me that this might just be what life was going to look like for me, considering the MS. An ordinary person could bounce back from this, he said, but I might not be able to rebuild the needed muscles to freely walk again. My body was already trying to destroy itself, after all.
My orthopedic doctor didn't have any good answers either. Five months in, he didn't understand why I hadn't progressed in my healing since week 6. He sent me for another MRI which showed the original break was somehow worse than the prior images had shown. "That type of break takes six months," he told me.
But he was wrong again.
Six months came and went I noticed I needed the cane less often and hardly ever the crutches. But I still needed a brace every day and couldn't walk more than a few yards. At the eight-month mark, I ran a single, painful, twelve-minute mile, and I was back on the cane for weeks.
The pattern continued for 34 physical therapy sessions over 18 months, and there were plenty of moments when I wondered whether I'd ever again be able to walk freely again. I cancelled my bucket-list trip to Machu Picchu because I couldn't move around.
I had to keep cancelling races too. I'd run seven half marathons before the broken knee, and had signed up for two more races that my knee wouldn't allow. I needed the goal of a race in sight as a light at the end of the tunnel for my rehab, but I got really tired of the disappointment of cancelling.
But as difficult as it was, the hard part wasn't just the fact of not being able to walk or run.
Staying active is one of the best way to fight MS, and I couldn't. By the time knee healed, I wondered if it would be too late for the rest of my leg to work.
But regardless, I fired the physical therapist who told me to get used to life with a cane.
Other people told me the same thing, and I think they meant well. They wanted me to stop torturing myself with cancelled races and vacations and accept that life would be different now. But I don't think they understood that I was going to be tortured regardless. So why give up hope for a light at the end of the tunnel?
My doctor released me from his care when I showed a few signs of finally getting in sight of turning a corner. My recovery was so imperceptibly slow that the only way I could measure it was to notice that on a good day I walk one more block than two months before, but after nine months, when I was far from healed, but could point to some verifiable improvement since week 6, he sent me packing.
I think he was worried about getting sued.
Eventually, the crutches gave way to the cane, which gave way again to the crutches, which gave way to the cane. After a few months, I added a knee brace to mix, and was able to survive just with that, at least until I overdid it again and needed the cane.
It's now been 21 months since I broke my knee, and two months since I last used the brace.
Coming back from it was the hardest thing I've ever done.
I think I'm finally done with the brace, and the cane, and the crutches. I've said that so many times before, but this time it seems real. I just ran 11 miles without them.
And somehow, according to my most recent MRI, my MS didn't visibly progress during the whole ordeal.
I healed just in time to run my hometown half marathon this year. I would have liked another month to train for it, because at this point, I'm not quite the runner I used to be. Despite what my MRI says, I notice that I can't always run in a straight line anymore and my feet tend to kick the opposite leg when I get tired.
But I'm pretty sure I'll be able to do 13 miles by March 3, and I haven't given up that I'll whip into shape and run them faster than I did in any of my others seven races. I've also linked my race to the National MS Society's "Finish MS" Fundraiser, where people can dedicate their entry into an athletic contest to fundraise for a cure. You can read more about that here.
https://secure.nationalmssociety.org/site/TR?px=15646597&fr_id=29926&pg=personal
I'm running for donations to find a cure for MS, but it's more than just that.
I'm running to show that the even the most inexplicable, frustrating, and soul-sucking journey of life can end eventually. I'm running as a means of refusing to give up on a dream that other people think is unrealistic. I'm running because I've learned that joy in life isn't about never falling down. It's about getting back up again when you do, and moving toward the goal.
But mostly, I'm running because I finally can.
I wasn't sure this day would ever come.
If you'd like to quite literally be a part of the event, I've set up a link for donations on my Facebook page. I'd love your support to help Finish MS.
My knee is still delicate and overexertion can lead to another MS attack, so my old physical therapist probably thinks this whole thing is a bad idea.
But I wouldn't have gotten anywhere had I listened to him. And definitely not the 13.1 miles from the starting line of the race until the finish line.
MS gives me more issues that I can quickly describe, but I've managed ok thus far against just it. Add in a broken kneecap to the mix, and life gets more complicated.
Combine MS with a broken kneecap that defied medical science in its steadfast and inexplicable refusal to heal, and you'll begin to get the picture of my last 21 months.
I fell on a dark Portland sidewalk in May 2017. I tore my jeans and it hurt. Sometimes people look at me incredulously when I tell them I broke my knee by falling, and they and ask me how I fell.
I have MS, I remind them.
And also it was dark out and I didn't see the little curb cut on the sidewalk that allowed people in wheelchairs to cross the street. I guess you could say that it was that particular disability accommodation, combined with my own disability, that was my literal downfall.
I walked through the Portland airport just fine the next day as I returned from a work trip. I was thankful the damage wasn't worse. It was mildly uncomfortable by the time I got to Oakland, but I made it home just fine. Two days later I had a trip to Japan scheduled, and it looked like I would be ok.
The next day was noticeable worse, but I could walk. I wondered whether to cancel the trip, but I was afraid the swelling would impede any type of reliable medical evaluation so early on.
So I bought the bulkiest knee brace I could find and hobbled my way onto the plane, hoping that the injury would be just a sprain that would get better after a few days.
Instead, things got worse for a week until I got home.
I went to the emergency room the day after I got back. The flustered doctor there, who looked about 14, told me it was just a bruise and it would be fine in 10 days. When I told Doogie Howser it had already been 10 days and I couldn't walk a step, he told me to go see a specialist.
It would be the first drop in a sea of misdiagnoses to come.
The specialist didn't see a break on the X-ray, but he referred me for an MRI. The MRI showed a microscopic fracture, so small that it's colloquially known as a bone bruise. "Six-to-eight weeks and you'll be fine," he told me.
If only.
The first time I walked without crutches was about six weeks later, after my physical therapist re-taught me how to walk. I thought the worst was behind me. But one Sunday in July I walked too many steps in a museum and my knee gave out again.
I was back on crutches for weeks.
The same pattern continued for the next eight months. I'd get better, put away the crutches, and then take one step too many at Walgreen's and need mobility assistance for weeks. If I moved from 2.7 to 2.9 mph on the gravity assisted treadmill at PT, I might overdo it and be back on my cane. If I parked too far from the entrance to the store, all bets were off.
Neither my doctor nor my PT could explain it.
The same PT who taught me how to walk warned me that this might just be what life was going to look like for me, considering the MS. An ordinary person could bounce back from this, he said, but I might not be able to rebuild the needed muscles to freely walk again. My body was already trying to destroy itself, after all.
My orthopedic doctor didn't have any good answers either. Five months in, he didn't understand why I hadn't progressed in my healing since week 6. He sent me for another MRI which showed the original break was somehow worse than the prior images had shown. "That type of break takes six months," he told me.
But he was wrong again.
Six months came and went I noticed I needed the cane less often and hardly ever the crutches. But I still needed a brace every day and couldn't walk more than a few yards. At the eight-month mark, I ran a single, painful, twelve-minute mile, and I was back on the cane for weeks.
The pattern continued for 34 physical therapy sessions over 18 months, and there were plenty of moments when I wondered whether I'd ever again be able to walk freely again. I cancelled my bucket-list trip to Machu Picchu because I couldn't move around.
I had to keep cancelling races too. I'd run seven half marathons before the broken knee, and had signed up for two more races that my knee wouldn't allow. I needed the goal of a race in sight as a light at the end of the tunnel for my rehab, but I got really tired of the disappointment of cancelling.
But as difficult as it was, the hard part wasn't just the fact of not being able to walk or run.
Staying active is one of the best way to fight MS, and I couldn't. By the time knee healed, I wondered if it would be too late for the rest of my leg to work.
But regardless, I fired the physical therapist who told me to get used to life with a cane.
Other people told me the same thing, and I think they meant well. They wanted me to stop torturing myself with cancelled races and vacations and accept that life would be different now. But I don't think they understood that I was going to be tortured regardless. So why give up hope for a light at the end of the tunnel?
My doctor released me from his care when I showed a few signs of finally getting in sight of turning a corner. My recovery was so imperceptibly slow that the only way I could measure it was to notice that on a good day I walk one more block than two months before, but after nine months, when I was far from healed, but could point to some verifiable improvement since week 6, he sent me packing.
I think he was worried about getting sued.
Eventually, the crutches gave way to the cane, which gave way again to the crutches, which gave way to the cane. After a few months, I added a knee brace to mix, and was able to survive just with that, at least until I overdid it again and needed the cane.
It's now been 21 months since I broke my knee, and two months since I last used the brace.
Coming back from it was the hardest thing I've ever done.
I think I'm finally done with the brace, and the cane, and the crutches. I've said that so many times before, but this time it seems real. I just ran 11 miles without them.
And somehow, according to my most recent MRI, my MS didn't visibly progress during the whole ordeal.
I healed just in time to run my hometown half marathon this year. I would have liked another month to train for it, because at this point, I'm not quite the runner I used to be. Despite what my MRI says, I notice that I can't always run in a straight line anymore and my feet tend to kick the opposite leg when I get tired.
But I'm pretty sure I'll be able to do 13 miles by March 3, and I haven't given up that I'll whip into shape and run them faster than I did in any of my others seven races. I've also linked my race to the National MS Society's "Finish MS" Fundraiser, where people can dedicate their entry into an athletic contest to fundraise for a cure. You can read more about that here.
https://secure.nationalmssociety.org/site/TR?px=15646597&fr_id=29926&pg=personal
I'm running for donations to find a cure for MS, but it's more than just that.
I'm running to show that the even the most inexplicable, frustrating, and soul-sucking journey of life can end eventually. I'm running as a means of refusing to give up on a dream that other people think is unrealistic. I'm running because I've learned that joy in life isn't about never falling down. It's about getting back up again when you do, and moving toward the goal.
But mostly, I'm running because I finally can.
I wasn't sure this day would ever come.
If you'd like to quite literally be a part of the event, I've set up a link for donations on my Facebook page. I'd love your support to help Finish MS.
My knee is still delicate and overexertion can lead to another MS attack, so my old physical therapist probably thinks this whole thing is a bad idea.
But I wouldn't have gotten anywhere had I listened to him. And definitely not the 13.1 miles from the starting line of the race until the finish line.
Sunday, January 6, 2019
A Puppet Tiger Wonders What's Wrong Him
Sometimes I wonder if I'm a mistake
I'm not like anyone else I know
When I'm asleep or even awake
Sometimes I get to dreaming that I'm just a fake
Often I wonder if I'm a mistake
I'm not supposed to be scared am I?
Sometimes I cry and sometimes I shake
Wondering isn't it true that the strong never break
I'm not like anyone else I know
I'm not like anyone else
-Daniel the Striped Tiger
(from Mr. Rogers' Neighborhood)
Daniel Striped Tiger, the puppet from the old Mr. Rogers' show, once sang about how different he felt from all the other tigers. He was small and mild instead of a brave, ferocious beast. He didn't hunt antelope for meals--he didn't eat at all, actually. Instead of roaring and jungle-sharking decibels, he spoke English at a conversational volume. All his friends were humans, who weren't known to consort with tigers.
If he ever saw tigers at the zoo, they likely didn't even acknowledge him as one of their own.
The humans he knew were nicer to him, but he knew he wasn't one of them either. He was too short, and didn't wear clothes. He couldn't reach the pedals to drive to meet up for dinner, and he didn't have an ID to get in the club. Besides, even if Daniel did show up for a meal with his human friends, everyone knew that he would literally just be in the way.
The humans reminded him of their differences constantly, even by Daniel's name. They called him Daniel Tiger, instead of a regular name like Daniel Johnson. None of his friends were named anything like Fred Human.
Daniel was different.
Daniel S. Tiger didn't quite fit into the human world or the animal world. And there was no way to hide it.
Daniel didn't feel like he fit in, and began to wonder if something was wrong with him.
Maybe that's what you're doing too.
Maybe Christmas with family reminded you how different you are from those you grew up with. Or maybe Christmas was the breath of fresh air that reminded you how unnatural your regular life has become. Maybe the new year marked a return to a job that doesn't seem fulfilling, to a city you wouldn't have chosen, or to a routine that feels like something other than the best version of your life.
Or maybe none of that applies, and you still feel just a little lost and alone.
If that sounds a little familiar, don't worry. Even Mr. Rogers felt that way too. His puppet tiger sang the song, but Mr. Rogers wrote the lyrics. In other words, the most uncontroversial, kid-friendly, vanilla, universally beloved superstar that American television has ever produced felt unloved and alone.
The good news is that Daniel Tiger's human friend heard Daniel singing, and spoke to his concern. She turned Daniel's solo into a duet:
I'm not like anyone else I know
When I'm asleep or even awake
Sometimes I get to dreaming that I'm just a fake
Often I wonder if I'm a mistake
I'm not supposed to be scared am I?
Sometimes I cry and sometimes I shake
Wondering isn't it true that the strong never break
I'm not like anyone else I know
I'm not like anyone else
-Daniel the Striped Tiger
(from Mr. Rogers' Neighborhood)
Daniel Striped Tiger, the puppet from the old Mr. Rogers' show, once sang about how different he felt from all the other tigers. He was small and mild instead of a brave, ferocious beast. He didn't hunt antelope for meals--he didn't eat at all, actually. Instead of roaring and jungle-sharking decibels, he spoke English at a conversational volume. All his friends were humans, who weren't known to consort with tigers.
If he ever saw tigers at the zoo, they likely didn't even acknowledge him as one of their own.
The humans he knew were nicer to him, but he knew he wasn't one of them either. He was too short, and didn't wear clothes. He couldn't reach the pedals to drive to meet up for dinner, and he didn't have an ID to get in the club. Besides, even if Daniel did show up for a meal with his human friends, everyone knew that he would literally just be in the way.
The humans reminded him of their differences constantly, even by Daniel's name. They called him Daniel Tiger, instead of a regular name like Daniel Johnson. None of his friends were named anything like Fred Human.
Daniel was different.
Daniel S. Tiger didn't quite fit into the human world or the animal world. And there was no way to hide it.
Daniel didn't feel like he fit in, and began to wonder if something was wrong with him.
Maybe that's what you're doing too.
Maybe Christmas with family reminded you how different you are from those you grew up with. Or maybe Christmas was the breath of fresh air that reminded you how unnatural your regular life has become. Maybe the new year marked a return to a job that doesn't seem fulfilling, to a city you wouldn't have chosen, or to a routine that feels like something other than the best version of your life.
Or maybe none of that applies, and you still feel just a little lost and alone.
If that sounds a little familiar, don't worry. Even Mr. Rogers felt that way too. His puppet tiger sang the song, but Mr. Rogers wrote the lyrics. In other words, the most uncontroversial, kid-friendly, vanilla, universally beloved superstar that American television has ever produced felt unloved and alone.
The good news is that Daniel Tiger's human friend heard Daniel singing, and spoke to his concern. She turned Daniel's solo into a duet:
It's really true
I like you
crying or shaking or dreaming or breaking
there's no mistaking it
You're my best friend
Her message was simple. It doesn't matter how we are different, I love the person you are. I believe in your dreams, and I'll hold you when you life gets scary and you feel like shaking.
Having that kind of belonging is as much as most of us really need. But if you don't have that right now, that's ok too. Finding your place in the world requires at least a little bit of time wandering alone. Anyone who hasn't felt a little lost at some point, has probably never tried to find themselves.
More importantly, I like to think that maybe the message of Daniel Tiger's human friend has been God's message to us all along. A popular song on the radio suggests as much:
You say I am loved
when I can't feel a thing
You say I am strong
when I think I am weak
You say I am held
when I am falling short
When I don't belong
you say I am yours.
And I believe
What you say of me.
-Lauren Daigle
(You say)
Like Daniel Tiger, I sometimes feel like I don't belong or fall short of my wildest dreams. It's nice to think that we're held in those moments, even if we don't feel it. It's comforting to consider that maybe someone helps us gather the strength to dust ourselves off from our falls and get back up to a better place and try again. It's hopeful to imagine that the ways we feel different from everyone else were purposely and uniquely woven into our souls, to make the world different through us than what it would be without us.
So maybe we're not like anyone else. But that doesn't mean we're a mistake. We cry and shake when things don't go our way, and we wonder why everything doesn't fall into place. But someone, whether in earth or in Heaven, likes us just the way we are.
Of course, I don't know any of this for sure. But it makes me smile to think about. It makes me sleep a little more peacefully at night. It helps this life make more sense to me.
And I believe.
Sunday, December 16, 2018
Christmas on the San Francisco Subway
"Do you have a dollar?" asked the man beside me at the subway station. He was dressed as though he'd been doing manual labor all day. "I gave a couple bucks to the guy playing by the station entrance and now I don't have enough for my fare when I get off."
"Sorry man, I only have a twenty."
"Where you gettin' all that?"
I laughed.
"I'd give it to you if I had it."
"I know. I can tell by your spirit. But hey, if I can find someone to change your 20, will you give me a dollar."
"Sure, man. I give money to that guitar player too sometimes. He's actually pretty good."
He boarded the train alongside me. My stop is at the end of the line, but his was about halfway down, in a particularly bad part of Oakland.
He walked around the train asking people if they had change for a 20. No one did, and most of them seemed annoyed by the questions. After a few minutes he returned.
"I tell you what. I'll just ride the train out to your stop, and then you can use the change machine to break your $20. Then I'll catch the train back."
"Man, that would take about an extra hour. That's a whole lot of trouble."
"Yeah, but one time I hopped the gate and got a $125 ticket. I can't afford that. I'm trying to buy a Christmas present for my girlfriend."
"So, if I break a 20, am I going to get $20 change back in quarters?"
"No, the $20 change machine gives you four fives."
"Alright," I said. "But that's a lot of trouble to get a dollar."
"Actually, I could use one of the fives. Once I get off at the station, I have to take a bus to my mom's house."
I began to get skeptical. The request for a dollar just became five, and I wondered if $5 would multiply, and whether he did this kind of thing often.
But he looked like he had worked all day, he had a credible description of his job unloading shops at the port, and he was catching the train home at rush hour. As we continued to talk, he seemed like a really nice guy. And even if this was some kind of elaborate con, he was willing to ride the subway and extra 25 minutes each direction, with a 15-minute layover in between, for five dollars.
Whatever the story, he clearly needed the $5 more than I did, so I told him he could have a five.
As I heard the man make polite conversation with another woman beside me, I began to wonder. If this guy needed five dollars more than I did, didn't he also need $20 more than I did?
I thought of his poor mom, waiting an extra hour on her so he could legally depart his train.
"I don't want your mom to have to wait so long," I told him.
"It's ok," he said.
"I want to just give you the $20."
"Are you sure? Thank you so much. I'll pay you back on Friday, when I get paid."
On the ride home, he kept insisting that he would repay me the entire ride home. He told me about working overtime to pay for Christmas.
He asked me about my job. In today's political climate. I don't always like to tell strangers that I'm a prosecutor, and inner city Oakland isn't exactly the place to make an exception to that rule. But this time I did.
"Do you love it?" he asked.
"I do."
"Gotta do what you love."
I don't know if you believe in the man upstairs," he said a few minutes later, "but this is a miracle. I have to get my mom to the doctor somehow. That 20 dollars will do it."
He promised to meet me at the subway entrance on Friday to repay me. I told.him what time I usually got to the station. I would have liked to have heard an update on his mom.
When Friday came, it was cold and rainy and I was feeling ill, so I only waited a few minutes before I went to into the station to catch my train.
I don't know if he ever showed up. I wasnt going to take his money, but it would have been nice to tell him that in person and wish him a merry Christmas.
But I hope I made Christmas a little merrier, for both the nice man and his girlfriend, regardless.
"Sorry man, I only have a twenty."
"Where you gettin' all that?"
I laughed.
"I'd give it to you if I had it."
"I know. I can tell by your spirit. But hey, if I can find someone to change your 20, will you give me a dollar."
"Sure, man. I give money to that guitar player too sometimes. He's actually pretty good."
He boarded the train alongside me. My stop is at the end of the line, but his was about halfway down, in a particularly bad part of Oakland.
He walked around the train asking people if they had change for a 20. No one did, and most of them seemed annoyed by the questions. After a few minutes he returned.
"I tell you what. I'll just ride the train out to your stop, and then you can use the change machine to break your $20. Then I'll catch the train back."
"Man, that would take about an extra hour. That's a whole lot of trouble."
"Yeah, but one time I hopped the gate and got a $125 ticket. I can't afford that. I'm trying to buy a Christmas present for my girlfriend."
"So, if I break a 20, am I going to get $20 change back in quarters?"
"No, the $20 change machine gives you four fives."
"Alright," I said. "But that's a lot of trouble to get a dollar."
"Actually, I could use one of the fives. Once I get off at the station, I have to take a bus to my mom's house."
I began to get skeptical. The request for a dollar just became five, and I wondered if $5 would multiply, and whether he did this kind of thing often.
But he looked like he had worked all day, he had a credible description of his job unloading shops at the port, and he was catching the train home at rush hour. As we continued to talk, he seemed like a really nice guy. And even if this was some kind of elaborate con, he was willing to ride the subway and extra 25 minutes each direction, with a 15-minute layover in between, for five dollars.
Whatever the story, he clearly needed the $5 more than I did, so I told him he could have a five.
As I heard the man make polite conversation with another woman beside me, I began to wonder. If this guy needed five dollars more than I did, didn't he also need $20 more than I did?
I thought of his poor mom, waiting an extra hour on her so he could legally depart his train.
"I don't want your mom to have to wait so long," I told him.
"It's ok," he said.
"I want to just give you the $20."
"Are you sure? Thank you so much. I'll pay you back on Friday, when I get paid."
On the ride home, he kept insisting that he would repay me the entire ride home. He told me about working overtime to pay for Christmas.
He asked me about my job. In today's political climate. I don't always like to tell strangers that I'm a prosecutor, and inner city Oakland isn't exactly the place to make an exception to that rule. But this time I did.
"Do you love it?" he asked.
"I do."
"Gotta do what you love."
I don't know if you believe in the man upstairs," he said a few minutes later, "but this is a miracle. I have to get my mom to the doctor somehow. That 20 dollars will do it."
He promised to meet me at the subway entrance on Friday to repay me. I told.him what time I usually got to the station. I would have liked to have heard an update on his mom.
When Friday came, it was cold and rainy and I was feeling ill, so I only waited a few minutes before I went to into the station to catch my train.
I don't know if he ever showed up. I wasnt going to take his money, but it would have been nice to tell him that in person and wish him a merry Christmas.
But I hope I made Christmas a little merrier, for both the nice man and his girlfriend, regardless.
Sunday, November 25, 2018
What Am I Thankful For? Two Years and Counting
Two years.
After I was diagnosed with multiple sclerosis, one of my first questions was how long I had before I needed a wheelchair.
My fear was that I had only had a couple of weeks or months before life as I knew it became unrecognizable.
I've only had one MS attack so far. It left a few scars (or "sclerosis," in Latin), but its nothing that I can't handle. There's no way to know what kind of damage the next one might do.
So I'm just hoping not to have another attack, at least anytime soon.
When I read somewhere that on average, someone with my kind of MS on my kind medication, went two years between their first attack and their second, I was thrilled.
I had the promise of two years of free life, by which I mean two years to live life in a manner that didn't require a lot of adjustment. I had to give up dairy and fatty food and be sure to exercise all the time, and some days, for no apparent reason, I would wake up and feel like I got hit by a bus. But those were just adjustment at life's margins.
I'm sure life goes on and wheelchair bound folks find plenty of ways to make it meaningful, but I was hoping for time to do as much as possible of the living I still had on my bucket list.
That was two years and 15 days ago.
So it wasn't hard to think of what I was thankful for this year. According, to whatever I read at some website I can't remember slightly over two years ago, I'm officially beating the odds.
It's easy to take things for granted in life. I still do it, even though I try to remember that this sunset might be last one where my eyes work, or this Monday when I don't really wanted to write a brief, it might be the last case I ever get to work on.
I remember the feeling I had when I was in the midst of my first attack. I was almost done with a brief and I was afraid it might be the last one I might ever finish. I packed up my office, just in case.
I decided to go out with a bang, and I was prouder of that argument than any other one I've done in a long tme.
I've written many more briefs since, and I wish I could say I approach every brief that way now.
I wish I could approach every day that way.
I wish I could approach life that way.
I try to.
Sometimes it works.
I'm so thankful for the chance I've been given to still feel like myself, but I'm also going to be a little bit greedy.
I'm hoping that at this time next Thanksgiving, I'll have some other new adventures to be thankful for, including some half marathons and pretty sunsets.
I hope you have some adventures too. Try to, if you can, because this year isn't guaranteed for any of us.
Life is hard sometimes. Don't lose sight of the things that make it worthwhile.
Go hear some music.
Watch or read something that makes you laugh.
Call someone who loves you.
And be thankful for all the above.
After I was diagnosed with multiple sclerosis, one of my first questions was how long I had before I needed a wheelchair.
My fear was that I had only had a couple of weeks or months before life as I knew it became unrecognizable.
I've only had one MS attack so far. It left a few scars (or "sclerosis," in Latin), but its nothing that I can't handle. There's no way to know what kind of damage the next one might do.
So I'm just hoping not to have another attack, at least anytime soon.
When I read somewhere that on average, someone with my kind of MS on my kind medication, went two years between their first attack and their second, I was thrilled.
I had the promise of two years of free life, by which I mean two years to live life in a manner that didn't require a lot of adjustment. I had to give up dairy and fatty food and be sure to exercise all the time, and some days, for no apparent reason, I would wake up and feel like I got hit by a bus. But those were just adjustment at life's margins.
I'm sure life goes on and wheelchair bound folks find plenty of ways to make it meaningful, but I was hoping for time to do as much as possible of the living I still had on my bucket list.
That was two years and 15 days ago.
So it wasn't hard to think of what I was thankful for this year. According, to whatever I read at some website I can't remember slightly over two years ago, I'm officially beating the odds.
It's easy to take things for granted in life. I still do it, even though I try to remember that this sunset might be last one where my eyes work, or this Monday when I don't really wanted to write a brief, it might be the last case I ever get to work on.
I remember the feeling I had when I was in the midst of my first attack. I was almost done with a brief and I was afraid it might be the last one I might ever finish. I packed up my office, just in case.
I decided to go out with a bang, and I was prouder of that argument than any other one I've done in a long tme.
I've written many more briefs since, and I wish I could say I approach every brief that way now.
I wish I could approach every day that way.
I wish I could approach life that way.
I try to.
Sometimes it works.
I'm so thankful for the chance I've been given to still feel like myself, but I'm also going to be a little bit greedy.
I'm hoping that at this time next Thanksgiving, I'll have some other new adventures to be thankful for, including some half marathons and pretty sunsets.
I hope you have some adventures too. Try to, if you can, because this year isn't guaranteed for any of us.
Life is hard sometimes. Don't lose sight of the things that make it worthwhile.
Go hear some music.
Watch or read something that makes you laugh.
Call someone who loves you.
And be thankful for all the above.
Sunday, October 14, 2018
I Can't Do This
"I can't do this," I thought, when I heard the news.
Not something else.
Not more bad medical news.
Not another limitation that would change my life.
Not again.
"Hadn't I been through enough,?" I wondered.
Apparently not.
Two years ago I went blind in one eye and was diagnosed with multiple sclerosis. Six months later, I fell and broke my kneecap, which still hasn't fully healed, even after 17 months and 34 physical therapy sessions. A few months ago I had a scary trip to the oncologist, as it appeared my MS medication might be killing my liver, but it turned out to be a false alarm.
Just as my everything seemed to be getting back to normal, I asked my dentist about a little bump I had in my gums, on a spot where I had a root canal 20 years ago. It turned out I needed immediate surgery (none of which was covered by insurance) to remove my upper front tooth, which had shattered under my gum lines and infected the area around it. The surgeon would then graft some new bone into my jaw so that some day it can support an implant.
I didn't ask from whom they got the extra bone. I think I can imagine. At least I'm not that guy, I suppose.
It's Halloween, so I guess it's appropriate I get the bone fragments of the departed inserted into me. I call it getting into the spirit of the season.
It's not quite as good, from a spirit of the holiday perspective, as having a pumpkin for a head, but I suppose I could look into that if all else fails.
Jokes aside, it's going to be a long and miserable process. I won't have a front tooth for seven or eight months, if all goes perfectly. It will take four months for the newly injected bone from the dead guy to mesh in my jaw. In the meantime, if I feel dead inside, it won't just be because I'm depressed about missing a front tooth. After four months, the surgeon will go back in an insert a titanium screw to my jaw bone.
Three-to-four months after that, when the screw is fully enmeshed into my jaw bone, I will finally get a new tooth implanted into the screw.
In the meantime I have a removable retainer that attaches to the roof of my mouth with a fake tooth on it. The tooth fits into the gap in mouth and it looks just fine, but it's driving me crazy.
It's bulky and super uncomfortable. It isn't strong enough to bite into anything and it moves around whenever I swallow solid food. It's basically useless as anything other than a cosmetic device. I can speak with it in without a slur if I concentrate really hard and talk slowly, but the act of speaking is difficult and exhausting, which isn't ideal for an attorney who argues for a living.
To make matters worse, the doctor forbid me from exercising for the first six days after my surgery, and by day four I couldn't feel my left leg anymore. I went too long without resisting my MS, and it started to take over.
I went to the gym that night anyway. I'd rather have a working leg than a working jaw bone. These are the choices I have to make these days.
My leg is a little better now, and I don't think I did any further lasting damage to my jaw, but it's going to be a long seven or eight months. I feel like I'm living in a Whack-a-Mole game, where as soon as I spend too much time dealing with one health issue something else pops up.
I'm not sure I can do this.
There are two good things about my operation, if you look at it a certain way.
First, it's almost Halloween, so I can choose a costume that takes advantage of my missing tooth and have people believe that I really, really committed myself to the bit. That's absolutely what I'm going to say if anyone asks.
The other good thing is that I didn't have to feel ready for my surgery. It wasn't like so many other challenges in my life, like a trial or a bar exam, or a half marathon, where you were sure to fail if you didn't come prepared. All I had to do was show up and hope my someone else had done all the prep to make the surgery go as it should. I never felt ready for it, and I don't feel ready for a toothless life on the other side. But sometimes all life asks from us is to show up and rest takes care of itself.
Sometimes that's all we can do.
A friend told me today how resilient I was, but I don't feel that way. I feel broken inside. (I'm broken on the outside too, actually. If I don't have my retainer in, you can see it when I smile.) I just don't know what else to do other than to keep checking off life's obligations, even if I'm not particularly happy about it. I can't just go to sleep and wake up in 8 months, or whenever there is a cure for MS, as much as I would like to.
After I was first diagnosed with MS, I found myself thinking that I couldn't live my life with whatever I was about to face. A voice inside my head that sounds like what I think God sounds like responded back that all I had to do for now was to make it through today. Tomorrow God and I could reconvene to see if we could do it again.
Almost two years later, we're still moving forward, one day at a time. I can't fathom living the next eight months without biting into solid food, constantly feeling uncomfortable, and wondering how on earth I can ever kiss my wife, but I guess I can make it through today. .
Part of me feels like I'm being melodramatic. I haven't lost a loved one (I liked my front tooth, but I wasn't infatuated), I have a pretty good job and make a comfortable living, which hopefully a missing tooth won't derail. I get to live in a beautiful little valley full of wine and sunshine, and my MS progression has been so much slower than it might have been.
I'm lucky in so many ways, and I don't mean to take any of that for granted. But a different part of me feels like I got knocked down two years ago, and I keep getting kicked every time I'm on the verge of getting up. It could be worse, some would say, but that feels hollow because it's true of almost everyone, anywhere. It isn't enough to curb all the unhappiness in this unperfect world.
In "Finding Nemo," Dory the Fish tells herself to "just keep swimming," as a means of moving forward through her ongoing problems by doing whatever small movements were in her power. I know others who have used this mantra to make it through times more challenging than I can imagine.
But I feel like I'm swimming against the current, and I'm tired. I feel like I need a floatie.
I haven't found one, but I do have a few people to keep me afloat as I struggle with the tide. The friend who made soup at 5 a.m. and brought it over before I went to work. The one's who've said prayers or words of encouragement. Even the people who've said, "that must really suck," help me remember that I'm not crazy for feeling overwhelmed sometimes.
And let's not forget coffee. At least I have coffee, which is the next best thing to a floatie of which I know. As of yesterday, my dentist even let me drink it hot again.
I'm in a coffee shop now, looking out at fountains flowing and people laughing on a beautiful day in Livermore. It's nice here. When I'm done, I think I'm feeling well enough for a little run through my trail in the vineyards. Tonight maybe I'll plan what I want to do for my birthday. Maybe I can finally speak well enough to return some calls.
I really wish I could have a burger for dinner. There's no magic answer to make hard times fly by faster. Life is unfair.
But today still has beauty. Maybe I'll find it on my run, or maybe on my back patio with the fire lit. Or maybe someone will read this whose life feels upside down and feel less alone going through whatever you are going through.
At least for today, I think you can do i
t. Maybe I can do it too.
Not something else.
Not more bad medical news.
Not another limitation that would change my life.
Not again.
"Hadn't I been through enough,?" I wondered.
Apparently not.
Two years ago I went blind in one eye and was diagnosed with multiple sclerosis. Six months later, I fell and broke my kneecap, which still hasn't fully healed, even after 17 months and 34 physical therapy sessions. A few months ago I had a scary trip to the oncologist, as it appeared my MS medication might be killing my liver, but it turned out to be a false alarm.
Just as my everything seemed to be getting back to normal, I asked my dentist about a little bump I had in my gums, on a spot where I had a root canal 20 years ago. It turned out I needed immediate surgery (none of which was covered by insurance) to remove my upper front tooth, which had shattered under my gum lines and infected the area around it. The surgeon would then graft some new bone into my jaw so that some day it can support an implant.
I didn't ask from whom they got the extra bone. I think I can imagine. At least I'm not that guy, I suppose.
It's Halloween, so I guess it's appropriate I get the bone fragments of the departed inserted into me. I call it getting into the spirit of the season.
It's not quite as good, from a spirit of the holiday perspective, as having a pumpkin for a head, but I suppose I could look into that if all else fails.
Jokes aside, it's going to be a long and miserable process. I won't have a front tooth for seven or eight months, if all goes perfectly. It will take four months for the newly injected bone from the dead guy to mesh in my jaw. In the meantime, if I feel dead inside, it won't just be because I'm depressed about missing a front tooth. After four months, the surgeon will go back in an insert a titanium screw to my jaw bone.
Three-to-four months after that, when the screw is fully enmeshed into my jaw bone, I will finally get a new tooth implanted into the screw.
In the meantime I have a removable retainer that attaches to the roof of my mouth with a fake tooth on it. The tooth fits into the gap in mouth and it looks just fine, but it's driving me crazy.
It's bulky and super uncomfortable. It isn't strong enough to bite into anything and it moves around whenever I swallow solid food. It's basically useless as anything other than a cosmetic device. I can speak with it in without a slur if I concentrate really hard and talk slowly, but the act of speaking is difficult and exhausting, which isn't ideal for an attorney who argues for a living.
To make matters worse, the doctor forbid me from exercising for the first six days after my surgery, and by day four I couldn't feel my left leg anymore. I went too long without resisting my MS, and it started to take over.
I went to the gym that night anyway. I'd rather have a working leg than a working jaw bone. These are the choices I have to make these days.
My leg is a little better now, and I don't think I did any further lasting damage to my jaw, but it's going to be a long seven or eight months. I feel like I'm living in a Whack-a-Mole game, where as soon as I spend too much time dealing with one health issue something else pops up.
I'm not sure I can do this.
There are two good things about my operation, if you look at it a certain way.
First, it's almost Halloween, so I can choose a costume that takes advantage of my missing tooth and have people believe that I really, really committed myself to the bit. That's absolutely what I'm going to say if anyone asks.
The other good thing is that I didn't have to feel ready for my surgery. It wasn't like so many other challenges in my life, like a trial or a bar exam, or a half marathon, where you were sure to fail if you didn't come prepared. All I had to do was show up and hope my someone else had done all the prep to make the surgery go as it should. I never felt ready for it, and I don't feel ready for a toothless life on the other side. But sometimes all life asks from us is to show up and rest takes care of itself.
Sometimes that's all we can do.
A friend told me today how resilient I was, but I don't feel that way. I feel broken inside. (I'm broken on the outside too, actually. If I don't have my retainer in, you can see it when I smile.) I just don't know what else to do other than to keep checking off life's obligations, even if I'm not particularly happy about it. I can't just go to sleep and wake up in 8 months, or whenever there is a cure for MS, as much as I would like to.
After I was first diagnosed with MS, I found myself thinking that I couldn't live my life with whatever I was about to face. A voice inside my head that sounds like what I think God sounds like responded back that all I had to do for now was to make it through today. Tomorrow God and I could reconvene to see if we could do it again.
Almost two years later, we're still moving forward, one day at a time. I can't fathom living the next eight months without biting into solid food, constantly feeling uncomfortable, and wondering how on earth I can ever kiss my wife, but I guess I can make it through today. .
Part of me feels like I'm being melodramatic. I haven't lost a loved one (I liked my front tooth, but I wasn't infatuated), I have a pretty good job and make a comfortable living, which hopefully a missing tooth won't derail. I get to live in a beautiful little valley full of wine and sunshine, and my MS progression has been so much slower than it might have been.
I'm lucky in so many ways, and I don't mean to take any of that for granted. But a different part of me feels like I got knocked down two years ago, and I keep getting kicked every time I'm on the verge of getting up. It could be worse, some would say, but that feels hollow because it's true of almost everyone, anywhere. It isn't enough to curb all the unhappiness in this unperfect world.
In "Finding Nemo," Dory the Fish tells herself to "just keep swimming," as a means of moving forward through her ongoing problems by doing whatever small movements were in her power. I know others who have used this mantra to make it through times more challenging than I can imagine.
But I feel like I'm swimming against the current, and I'm tired. I feel like I need a floatie.
I haven't found one, but I do have a few people to keep me afloat as I struggle with the tide. The friend who made soup at 5 a.m. and brought it over before I went to work. The one's who've said prayers or words of encouragement. Even the people who've said, "that must really suck," help me remember that I'm not crazy for feeling overwhelmed sometimes.
And let's not forget coffee. At least I have coffee, which is the next best thing to a floatie of which I know. As of yesterday, my dentist even let me drink it hot again.
I'm in a coffee shop now, looking out at fountains flowing and people laughing on a beautiful day in Livermore. It's nice here. When I'm done, I think I'm feeling well enough for a little run through my trail in the vineyards. Tonight maybe I'll plan what I want to do for my birthday. Maybe I can finally speak well enough to return some calls.
I really wish I could have a burger for dinner. There's no magic answer to make hard times fly by faster. Life is unfair.
But today still has beauty. Maybe I'll find it on my run, or maybe on my back patio with the fire lit. Or maybe someone will read this whose life feels upside down and feel less alone going through whatever you are going through.
At least for today, I think you can do i
t. Maybe I can do it too.
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