Monday after the Newport Marathon weekend, I had my last appointment with my neurologist, Dr. Lippincott. I bought him a copy of Wild, From Lost to Found On the Pacific Crest Trail, by Cheryl Strayed. I wanted to send him off into retirement with some light reading (har har).
What is it about this book that speaks to me? I have bought it for so many people now. I tell everyone I can that they should read it. Maybe it is her actual journey, her struggle. Maybe it is the transformation that takes place over this very measured and deliberate period of time. Maybe it is just a book about a lady that finds a need to go out and do something unexpected and she actually does it. Regardless, I'm glad Strayed found the honesty and courage to write it. I'm even more glad that she had the courage and insanity to have her trek out there in California and Oregon.
Running a marathon with an unknown variable like MS is like that, in a way. Courage and insanity to actually do. Courage and honesty to tell the tale. I take no pride in what I recounted to you in my struggles in the Newport Marathon, and yet, I told you.
So, book in hand, I went to bid farewell to my favorite neurologist, the second brain doc I have witnessed retired since my diagnosis. I was so sick when I first started seeing him; the interferon slowly rotting my skin where it went in, and squeezing me senseless with each day I stayed on it. I commend people who have stayed with their medication for many, many years. Dr. L took me off of injections and gave me the opportunity to try something else. My body responded by running and I have been running ever since. My diet has slowly changed to fit my activities and my spirit has been smoothed by the rough roads and bumpy trails I have skimmed along in so many different shoes I have now lost count. Dr. L gave me a chance to at this thing I have loved. Running. And there I was, offering him in return a send-off gift of courage and insanity; of courage and honesty.
What I wanted in return was honesty from him. What I was afraid of most of all was that he would say--of my Newport experience and running in general--that I was using up all of the good mobility that I had left, spending it like a drunken sailor in port for one night, only to regret and need it a little while later. My Newport experience had erased the phone call from his assistant the week earlier saying "no new lesions on your scan." Instead, I interpreted that as a different form of disease progression. What he said instead was this (and he says this just about every time now):
"I think we, that is to say you and I, have paid close attention to your disease and to you. I think this far out from stopping the meds..." here he paused and looked across the room at Dave and then back at me. "How long have you been off the injections?"
"Four years," Dave answered for me.
"Four years," I echoed.
"Wow, that's great!" The doctor emphasized his enthusiasm for my sake, knowing that I often doubt how well I am doing and have done. "Some in my field have even speculated there is a benign form of MS and maybe that is what we are dealing with here. Of course, how can we know? In fact, many people, even those on very strong drugs, still continue to have exacerbations, and who's to say you wouldn't had you continued. There's is no way of knowing with MS. But you have done exceptionally well." (Of course, I paraphrase here, but my husband says I got the gist).
He was smiling though and nodding his head in a way that I knew I would miss once he retired, confident and courageous when I did not feel it just yet. He continued. "You will continue to get your scans and continue to do your running and we'll see. But I have no reason to think that you will have any sudden and serious negative effects from your disease...anytime soon, and maybe ever."
I know it's not a cure. I know he did not (could not) proclaim me well. But I did know a little honest hope then in that moment. And that moment was all that mattered.
Here's what else I know: I have not had any significant changes in my lesions in my brain or spine in eight years. I have also not experienced any exacerbations since coming off of the injections four years ago. Instead, in four years, I ran three marathons, seven half marathons (Dave and I are not sure) and countless 10ks, 5ks, and other distances, not to mention the training, the cross training, and the changes in diet and attitude. In all that time, something has been working. Something has told my immune system to stop attacking my brain and let me be. Maybe it is just for right now, but I'll take it.
This is my trek. This is my journey of self discovery and healing and it would be selfish if I didn't tell you how, or why, or even share my setbacks, as painful, embarrassing, as uninspiring as they may be to me.
Honesty. Courage. One more step. This is my need to go out and do something unexpected and you are my witnesses as I actually do it.
I am now training to run The Oregon Marathon on September 13th in Mt. Angel. Three months to go! Please check back to see how it's going. Better yet, sign up and run with me! http://www.theoregonmarathon.com/