Running with fear and gratitude … and MS

So I saw a new doctor last week – a podiatrist about my bunion.  And there was that usual medical history to go over, but we didn’t get to that part until after we had covered the part where I was concerned about running and making the bunion worse.  Somewhere I dropped the “MS” bomb, but I don’t make a big deal about it so he had to ask me to repeat myself.  I’m guessing he doesn’t have a lot of patients with MS who are running 75-100 miles a month.

DISCLAIMER:  Anything I say about MS is my only my experience, it is in no way meant to constitute medical advice.  Nothing replaces open communication with a good medical professional or team! If you have MS, please do not use my experience to beat up on yourself because you can’t run.  MS is diffferent between people and within the same person at different times.  Oh, and if you don’t have MS, please don’t be telling someone with MS how you heard about this woman who was running, and if you just put your mind to it, so can you.   It doesn’t work that way.  I remember someone telling me about her father with MS who had retired to Floriday and played tennis every day, and – although she didn’t say the words – I heard that if I just managed right, I too could be playing te.  At the time, I couldn’t walk across a mall parking lot in the Florida heat.  I wanted to cry and to hit her at the same time.  So please, this is just my experience, so please take it for just that.

I have been thinking alot this training season about the fact that I was diagnosed with multiple sclerosis in 1987.  I was 25, single, and working absurdly long hours.  I had also started working out for the first time in my life.  Besides living at the gym, I had started working out with a body-building trainer once a week at a “hard-core” gym that seemed to have no A/C – in Dallas, in the early summer.  My trainer and training partner got a laugh when I tried to do squats or lunges at the end of a workout because I was so uncoordinated.  I was find if we did legs at the start of our training, but had no strength or coordination if we did it at the end.  Then one day the right side went to sleep, and it didn’t wake up.  That’s exactly how I described it to my doctor.  I didn’t really think it was anything serious – I was an invincible 25-year-old at the time – but it wasn’t until he said, “I don’t think you’ve had a stroke,” that I had any idea that there was something seriously wrong with me.  (Thank goodness he had the humility to admit pretty quickly that he needed help, and he called in a neurologist.  I’ve heard the nightmares of people who went years before a correct diagnosis, but that’s an entirely different story.)  The only thing I knew about MS when I was diagnosed was the slogan “crippler of young adults.”   I’ve learned a lot since then, as have physicians and pharmacists and the general public.   I find MS fascinating, but a bit of a pain to have to live with.

So for the past almost 23 years, I have learned to live with MS.  I know what it’s like to have both sides of my body feel different.  I am as likely to fall up stairs as I am to fall down them because I never know just exactly how much I’ve lifted my leg, and that quarter-inch miscalculation could be painful.  I know what it feels like to get out of bed and slide to the floor.  I have used a cane, as much as a signal to the rest of the world as anything.  I’ve had someone yell at me for using a disabled parking space because I have an invisible disability – he had no way of knowing that I couldn’t walk across a Florida parking lot without sitting down.  I’ve tried to bluff my way across a classroom hoping and praying that the professor doesn’t realize that I’m shuffling, not walking.  I’ve given a presentation when I couldn’t remember words or keep my train of thought because I was so overheated.  I’ve had double vision.  I’ve been so overcome with heat-induced MS fatigue that I just sat down and cried.  I’ve also learned to listen to my body, probably better than most “well” people.  I have had complete conversations with my MS.  We’ve discovered that we work better together than against each other (it always wins, by the way.)

And now I’m a runner.  A runner with multiple sclerosis.  It doesn’t make much sense, not when I sit down and think about it rationally.  I’m not “supposed” to be able to run.  How I got here is really a one-step-at-a-time story.  There was meeting the man who would become my husband, in spite of his early fears of all the things he wouldn’t be able to do because I had MS.  There was the learning that we could canoe or kayak during the heat of the summer because I could keep my body temperature down in the water.  Sit-on-top kayaks because putting my legs in a cockpit is like sitting in a sauna.  There was the freedom of being on a bike again.  Then we joined a gym with an indoor, air-conditioned track.  And finally, I asked a friend to run a 5k with me to keep me running.  It was in June and it was hot.  When we hit the place where I had always stopped before, she talked me down to a really slow pace.  I cooled off, and I kept running.  And I finished running.  In the words of my husband, “You’re hooked, aren’t you?”

I was hooked.  I started trying to find out about how to best run with MS. Here’s the first thing that I found on google:

Tim participated in the race as a 17-year veteran of multiple sclerosis. That he was able to run at all was a testament to his disciplined training, his determination, and yes, a measure of luck. Although he didn’t know it at the time, the 14th Annual Sailin’ Shoes 10K would mark the end of Tim’s career as a runner. Since then, he has experienced difficulty in walking, and running has been out of the question. This has been an enormous personal loss for him.  — Inside MS, Fall, 1996 by Suzanne Tregarthen

OK, so that kindof freaked me out.  I called my goto resource, my local chapter of  the National Multiple Sclerosis Society, but they didn’t really have much information.  They appropriately directed me to my physician.  He doesn’t have a lot of patients running with MS, but he said it wouldn’t hurt me.  So running has been a step into the unknown for me.

I found quickly that I prefer to run at least five miles.  It takes a good 2 miles for my body to even begin to start acting like a unit.  That may be as much because I am in my late 40s as because I have MS, but whatever it is, it is.  In January, 2009, I started a middle-distance training program with the goal of running a 10-miler.  I’ve stayed in training for the past year, and have run that 10-miler and 3 half-marathons.   Next week, I will run another half.

Throughout the past year, I have always had the words of that Inside MS ringing  in my gut.  I always wonder which run, which race, will be my last.  I feel the familiar twinge of numbness or tingling, and there is a slight panic.  I’ve learned – again, this is my experience only – that if I just give it another 400 meters or wait till the next water stop, the sensation will probably change.  I have to be smart about it, though.  If there is an unnecessary risk of tripping or falling,  I won’t push through, but most of the time, I just have to talk to myself and my MS and come up with a compromise.

A lot of running is mental for me.  I want to challenge myself, but not stupidly.  I sometimes get confused about whether to push through because I’m wimping out or to back off because I’ve really met my edge.  Throw MS into the equation, and there can be a lot of voices in my head all at the same time!  I’ve mentally dedicated my 2010 running to trying to tune those voices into something more harmonious than the cachophony that marked 2009.

So far, so good.  I’m trying to set challenging but realistic goals for each run.  I try to remember to be grateful for every step I take, and especially for all the people who help me take it – my running partners, my coach, my friends, and most of all,  my best #1 cheerleader, my husband.  I try to fuel my body without denying it what it needs. 

I also try not to deny the fear.  Thich Nhat Hahn says,  “People have a hard time letting go of their suffering. Out of a fear of the unknown, they prefer suffering that is familiar.”  I know how to be fearful of living with multiple sclerosis.  It has become a default for me.  It is also sometimes been an excuse.  It is frightening sometimes to go for a run when my legs feel less than perfect.  It is easier to say, “not today.”  But the rewards for trying are enormous.  Every time I run, I step into the unknown, but every run becomes a demonstration of my new known.  The fear that this might be the last run is there.  So I can either not run, and avoid that fear, or … I can run and find out if it’s my last.  If it does turn out to be my last run, I might as well make it good.

So today I’ll go out and run my last long run before the half next weekend.  It’s only seven miles, and I want to enjoy every step.  I won’t be running alone – I’ll run with my constant companions, fear and gratitude and multiple sclerosis.  And we’ll make it a good one.  That’s my promise to myself!

For more on running with and for MS check out

Dave Gillikin’s blog, The MS Runner — I wish I had found this blog last year

Mandy Crest’s great post about the MS guilt.  Terrific perspective setter.  Shouldn’t You Be Running a Marathon?

Ashley Kumlien’s MSRunthe US – Ashley’s 2010 run across the US to raise awareness and funds for treatment and cure for MS.  Check it out, follow her as she runs, and donate!

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3 Responses to Running with fear and gratitude … and MS

  1. Vicki says:

    Two thoughts, Jo. First, I am so honored and excited to be reading your blog. Thanks for being so open. Second, it occurs to me that I’ve subconsciously thought you had “just a touch” of MS, or some similarly odd thought. I’ve assumed that your running was evidence that MS hasn’t caused you difficulties. To really understand that you run WITH the difficulties is powerful. Again, thanks for being so open.

  2. Katie says:

    That was the most I’ve ever heard you talk about your current relationship with MS. It’s scary to read, especially after the *Inside MS* snippet. I never realized you could be doing damage and arrive at a point of no return. But, it seems like for you, the trying is important enough to run the risk (no pun intended). Keep inspiring us. We need it.

    • I really felt like it was time to talk about it. Just one major point of clarification – there is nothing to say that running will cause damage. In fact, my neurologist says it can’t really hurt. MS does what it darn well fells like doing. Stress may impact my course, but running really seems to be a de-stressor for me. The fear comes from the fact that one day, something can trigger an exacerbation, and my running career will end. It doesn’t feel like anything I can control – probably because I can’t. So I just have to practice acceptance and staying in the day and the moment. I can run today – tomorrow may be different. So that’s where I just have to pack up the fear and take it with me on every run. It’s much lighter when I acknowledge it’s there than when I try to ignore it and leave it at the unconscious level.

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