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.