From Devastation to Hope


It seems to be a pattern for me these days.    I seem to go into a race after a highly stressful week.   The week prior to the Erie Marathon….this might have been the worst.  

I had been having four straight days of this weird tingling and vibrating feeling on the left side of my body.    I couldn’t feel my foot well.    Had I been pulled over, I certainly would have failed a field sobriety test as my balance and coordination were horrendous.

I went to see my family doctor.    After asking me to follow his finger and seeing my eyes jump from side to side, he sent me for an immediate MRI.   Apparently, that’s another test I would have failed even without a chocolate martini.    Intoxication versus brain injury…..I would have given anything at that point for it to be as simple as me being a “light weight”.

An hour after the brain scan I was informed quite matter of factly by the physician:   “Your brain filled with lesions.”      I was assured that I did not have a brain tumor, but something was definitely going on.  It was likely one of two things: Either my lupus was now attacking the blood vessels in my brain causing blood vessel inflammation and strokes. OR I now also have multiple sclerosis (MS).     

I thought I was pretty healthy. My lupus hasn’t shown its ugly face for years (except maybe with some minor issues). And now I was looking at something potentially terminal or at the very least, extremely life-altering.

We don’t have all the answers yet.   I already have one autoimmune disease.   Now I might have another one.      More tests of my spinal cord and fluid will occur next week yet the suspicion is very high that I now have MS on top of lupus.


I have big races. Big dreams. Running is my world. I don’t want to lose this part of my life.

I had already signed up for the Erie Marathon in order to support my brother as he targets a fourth Boston qualifier. So I knew I needed to go and give it a shot, yet my confidence had vanished. I attempted a 10-mile run at goal marathon pace (a pace I should’ve had no problem holding for 10 miles) and I could barely stay under 9 minutes! I also needed to stop and walk several times.

My doctor ordered infusion treatments that would hopefully get things under control whether it was lupus or MS. So I went in and got hooked up to an IV for 3 hours and prayed that this would help my issues with weakness, tingling and lack of balance and vertigo.

Two days before the race I was on the fence whether I should even go or not. I decided I’d put no pressure on myself whatsoever and would plan to just jog/walk one of the 13.1 mile loops and then I could drop out of the race and wait for my brother. So I stopped worrying about my run and just prepared to be there for Tom.

The day before the race I went out for a two-mile shake-out run with the goal of running goal marathon pace. The weather was very cool so there was a nice break from the heat and humidity.

Well, I killed this 2 mile run. The day before that I couldn’t run a 10 minute mile. On this morning I ran at our marathon goal pace of 7:25. Was the infusion working? Or the cooler temps?  The only thing I noticed was that my arms were very weak and tired;   it was difficult to hold them up at the end of only two miles. Yet I had a spark of hope. Maybe I could keep up with my brother for a few miles before my body gave out.

The night before the race I got my typical one to two hours of sleep. This time it wasn’t pre-race jitters keeping me up but it was the shocking and burning feeling in my foot and leg that kept me up all night. But this was at least “only” a marathon, not a 100 mile race. Lack of sleep wouldn’t have the same detrimental effect.

On the morning of the race, I didn’t really feel nervous or excited. I was really just kind of apathetic I guess. Maybe I was still in shock and not really feeling like this race was very important in big scheme of things. But I put on all my running garb, ate breakfast, drank my coffee.    I also prayed I’d be able to use the bathroom at least before the start. And this was the day I was successful! Maybe 1/10 of the time I have success with this particular part of my to-do list. Was this a sign of good things?

We parked in the parking lot of some strange amusement park and, with flashlights in hand, hiked the ¾ mile to the race start. I was stumbling along on this chilly, windy morning with my left leg feeling considerably weaker than the right and my still healing toenail-less feet burning with each step. I was noticeably limping and feeling embarrassed that I was even attempting to start the race.

Although I normally love hotter weather, this 50 degree morning was a blessing in disguise. Heat is a huge exacerbator of MS symptoms. Perhaps my horrible previous week was partly due to the 90+ degree weather.   

Shivering, we finally made it to the start and checked our bags and headed to our pace group. Tom needed a 3:30 for a BQ which meant he was shooting for a cushion of 3:25. His training had gone exceptionally well, despite some hamstring issues, so we decided to shoot for 3:15.

The gun sounded and we took off in the back of the pace group, attempting to use the group to block the wind. The first two miles I was just trying to teach my legs to run smoothly, to time my foot strike to when I needed to push off as I had limited feeling in my left foot. Several times my body started tipping forward and I was sure I was going to stumble and be trampled by the hundreds of runners behind me. But somehow by the grace of God I never fell.

My breathing felt great. I felt a burst of new energy that I hadn’t felt for several weeks.  Maybe the cooler weather contributed to that.    Or perhaps the IV infusion I had a few days earlier was having an effect.  But only three or four miles into the race my arms felt like lead weights again.  It was so hard to hold them up. The rhythm in my stride began to go away.  My left leg did not want to keep up with the right. I had to focus every single stride in order to not fall. This was by far the most difficult and tiring aspect of this race.   Its difficult to describe how mentally exhausting it is when you have to tell your legs how to move once automatic pilot goes away.   

Ten miles in I told my brother my legs were feeling horrible and I wasn’t sure I could keep going. I told him not to worry if I fell back. It was more a feeling of mental exhaustion than anything. The focus it took to run smoothly and not fall was overwhelming and stressful.

At the halfway point I needed to find a port-a-pot for my typical mid race bathroom issues. Tom got ahead by a couple minutes as I darted off course to find the bathroom. The restart button was difficult after that. But I decided I would keep going until I couldn’t. I ran the first half in 1:37. I had well over 2 hours to easily qualify for Boston. If my running days were getting slim, I wanted at least one more round at Boston with my brother.

I ate half a Gu at mile 14 which were the only calories of the race.   I was saved here by being a fat adapted runner.  My energy was still great, other than the mental fatigue of keeping myself vertical.   I expected my pace to slow down and for my brother to get farther and farther away. Yet I was running faster than we were running together and he seemed to be getting closer. I was able to turn back on the autopilot and just keeping my legs moving.


Around mile 18 as I approached the water stop and attempted to grab a cup, I completely lost my balance and stumbled into the table, tried regaining my balance but zig zagged into a line of filled water cups on the ground knocking over about 10 of them.  I kept going yelling “sorry” and the lady replied, “It’s ok, I don’t mind refilling all of those cups” in a sarcastic tone. I felt bad.


I broke the race down like I would in a hundred miler. 8 miles to go. 4 and 4. Then 6 miles to go I changed it to 3 and 3. Then 4 miles to go and I went mile by mile. I know now I could basically walk it in and get my BQ. But why slow down if my legs were still moving, even if it was rather ugly?

With about 1/3 of a mile to go there was a spot on the course where you can see runners coming the other way has they head for the home stretch. I saw my brother and gave him a shout out and he looked surprised and happy to see me so close behind him.


As the finish line approached I looked at my watch and saw I had a shot to get under 3:15 so I started booking it- well attempted to anyway. It was a clumsy, awkward sprint. I finished in 3:14:59. My legs had a hard time listening to my brain when it told them they could stop. The lady with the medals grabbed a hold of me as I nearly stumbled and my legs were shaking profusely. But I managed to grab the medal and staggered over to my brother who finished in 3:14 flat. Being a male, it is much more challenging to qualify for Boston so I was ecstatic for him.


We found a spot to sit for a little while and I didn’t think I would ever get up again. I could not believe on this late Sunday morning all that had transpired in a week. I went from being barely able to walk on Tuesday to running a Boston qualifying marathon five days later.


I sat there and thanked God. I thanked God for my brother’s accomplishment. I thanked God for giving me one more successful race. If this happens to be the last one, I wanted to cherish it and remember the feeling with all my heart. I never want to forget. And I was making a statement to this disease. I wasn’t going to go out easily. There’s a lot of fight left in me.

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