Living is the Cure ~ Life with NMO

Living is the cure.
Fueling your body for life is the cure.
My disease is not going away.

Hot pink running tights with a shaved head and a princess tiara adorned on top.  This is what I see about three runners ahead of me.  I pick up my pace to get a better view of her. She is wearing a white tank top that is almost transparent so that all could notice that she had her breasts removed. You could see the scarring breaking through the fabric of her shirt.  I look over at her and give her a nod of my head and hold up my fist in a manner of encouragement. I choke back tears….she nods back and takes off running. It would be the last time I would see her.

16,000 runners and I was lucky enough to run with the strongest one, even if it was only for a brief moment.

She has the cure, I say to myself. A cure dose not come from medicine solely. The cure comes from deep within your spirit.

For myself I am not interested in raising money for the cure. I am not interested in running for the cure. There are plenty of good people already doing that. I am interested in raising up spirits. I am interested in bringing the dead back to life. I am interested in running with the cure.

For this is the cure…getting up and doing is the cure. Fueling your body for life is the cure. Today when I run I move not with the disease, but with the cure. For this action, this moment is about living a life…and that is the cure.

Three months prior to the race on this very same street that I am running on today, I sat at a coffee house with a young man who himself has recently been diagnosed with NMO. It was oddly comforting to share my experience with someone going through what I have been living with. Never in the past decade has the opportunity presented itself for me to talk with another man about life with NMO.

We swap stories about the impressionist life we see out of our legally blind eyes; mine in the right eye, his is in both. We talk about medicine, side effects, hopefulness of being seen by certain doctors. We talk about fear, our future and the unknown. His attitude about living with a disease was promising. I knew at that moment that this young man would have trials ahead of him but in the end he would come out a victor.

“Run this race with me” I tell him. “I promise you when you cross that finish line you will have all the answers you need about how to live with NMO. Have all your loved ones there…anybody who has felt your pain standing at the finish line. For when you cross that line it will be healing to all (especially me).  

In hindsight, that was terrible advice for me to give. Here is a young man who is going through steroids therapy, rounds of infusions, MRI’s, countless blood tests and hours of sitting in waiting rooms. All of this will continue to lie ahead of him for a long time, if not forever. Here I sit across the table asking a legally blind man to spend the next three months training for a race. Luckily, for the betterment of his health, he did not run with me. But be warned: when your life with NMO becomes balanced (and it will) I will be asking you again.
I had to live my words for myself…it was hard.

About six weeks out from race day all started going wrong. I would awake every morning in pain. My legs were weak (and still are), numb and tingly (that in itself in nothing new). Holding my own body weight became a struggle; my balance barely there. Getting out of bed was as if pre-paralysis would set in every night. I would awake with limited mobility to move my legs. I would use my arms to lift myself out of bed, placing my feet on the floor, next pushing myself off of the bed and then catching my balance on the wall. Standing there I would take inventory of what was working and what was not. Holding my arm against the wall I would stand there for a moment to regain my balance and let my bare feet grab hold of the floor. Next with one hand on the bed and one hand on the wall, I would make my way out of the room, using furniture, door frames and the narrow hall wall to keep me standing upright. Next would come the steps; one hand on the railing and one on the wall, it would take all four of my limbs to get me down the steps. Why struggle so much you may be asking? There’s coffee down there. With my coffee and a book I would sit in a chair for about a half and hour before my body would come back to life.

This has become my morning ritual and, with yoga and meditation, soon I would walk out the door either for a walk, bike ride or a run (most or somedays…read on).

I have enough life experience with this disease to know that my body is not broken. My mornings are nothing more than a misfire of brain neurons and nerves not working together. Even though I am feeling pain, there is nothing physically wrong with my bones or muscles.

Sometimes that last sentence make me feel better…sometimes.

Pain from doing something feels much better than pain from simply waking up. But at times that is how my body works…my brain neurons like to sleep in much longer than the rest of me.

So here I am, weeks out from running my first major race since my last setback 18 months ago.

Coming out of that setback I wrote a blog post titled “The New Normal”, which would go on to do a lot of good for people. Every week e-mails and kind messages would pop up almost magically thanking me for those words. Those messages, from all parts of this globe, were the best medicine I could have asked for. It seemed every time I wanted to quit I would receive a note of thanks….God’s ways may not be that mysterious after all. Somedays I would push on, somedays I would take a nap.

Goddamn it, I must live those words.

The most confusing bugger for me was that there was no rhythm to this flair up. Somedays my body would be at 100% and somedays never getting past go.  This “no rhythm” was killing me. For when you get an attack/flair up, you are down for awhile, then you rehab yourself back to health. Rehabbing was not working this time due to the fact that there was no rhythm to what I was going through. Somedays I would go out into the woods and run for an hour and feel light and energetic, and somedays getting to the mailbox was not going to happen.

Life with my body became “the call and response”, as if there was a mystical Baptist preacher yelling out to the congregation and the congregation would respond back to him. My body would call out to me and I would have to respond differently to each message.

This is where things get a little weird. Imagine a miniature Incredible Hulk with a taser gun living in the middle of your spine. This mini-Hulk is trapped inside the flesh monster (a.k.a me) and he is zapping and shocking his way to freedom, but he never gets free. My skin is too thick to set him free. My skin is too thin to hold all of the Hulk’s rage inside of me. This is what happens sometimes, with NMO, when the brain tries to communicate with nerves and there is a misfire (or worse, several in a row). That misfire has to go somewhere and is made up of electrical currents with the mission to deliver messages to your body. Instead of that message reaching its intended target, it hits outside of the bullseye, bringing unimaginable zaps of pain, for me, in my middle back.

Being electrocuted from the inside out is a godawful experience; I am pretty sure that it will kill me someday. The shocks happen randomly and without notice. A 30 second experience of these back zaps leaves me winded and gasping for air, instantly fatiguing me and a black fog of haze sweeps over my mind. I can not hold a thought and listen to music at the same time. The world moves in fast forward as I move in slow motion. The call and response of back zaps is debilitating. The treatment: sitting still and hopefully in silence.

I may go months without an episode of zaps, then for a day or two, the mini-Hulk fights to get out.  Three to four weeks before the race, the mini-Hulk fought hard.

For six weeks prior to race day I had good days and dark days. There was no rhythm; all I could do is respond to the call. I failed a lot. I have drank more alcohol during this time than any other time in my life. I would have two to three drinks a night to numb myself and self-medicate, to calm the mini-Hulk living inside my back and to get through the night (do not do this). In the morning after, I stumbled my way down to the kitchen and make myself the perfect kale smoothie to fuel my body for the hypocritical life that I was living (do make kale smoothies).

With purpose, effort, bourbon and kale I made it to race day. I now run past the coffeehouse which inspired me to enter this race in the first place. I watch as an older, frail man passes me by with the words “pain that feels good” scribbled on the back of his shirt.  I look around at the16,000 other runners, all with their own stories of why they are running today. The one thing that we all share is that we did the work to get us here today…and that feel good.

As I round the last corner before the finish line, there is a line up of little kids on the sidewalk cheering and reaching their arms out, waving to the runners for a high five. I make my way through the pack slowing down to hight five each one of those kids. They filled my heart up with an energy that is unexplainable. If it was not for this disease in the first place I would not be running here today. I choke back tears once again.

I remember that this disease has given so much to me. My days are lived fully because of this disease. I see the world in such a beautiful way now; that’s why I write these articles. I want to share as many of my miracles with you as I can.  This disease has given me life and for that I am eternally grateful.  I am eternally grateful to you for reading and sharing these words with your loved ones and friends. I am eternally grateful for the messages that you have sent me. I am grateful for your prayers…prayers that I will never quite earn.  With deep bows of gratitude, each one of you  are a blessing in my life.

Living is the cure…
Pass it on.