First, if you haven’t read part one you should check it out. You’ll get to hear about my non athletic upbringing in the theater world, that I repeatedly wore a silver unitard in public, and how I gradually found “my people” in science and nature and outdoor education.
When we left off this story, everything was going pretty well. I’d run a few marathons, climbed some tall mountains, and trekked across a small south African country. My partner and I bought some land, designed and built our house and then got married. I got my Masters degree and it eventually got me out of a pleasant but low paying retail job onto a professional path that led (after several years) to a full time position at a small college. I was on the verge of that point in your life when you look around and say “Huh, so this is it?”. After so many years of striving and dreaming and trying to figure it out, there you are, seemingly to have figured it out, or at least appearing to have, while inside you aren’t quite so sure. But you have everything you thought you wanted, and it seems ungrateful to question it.
For me in 2008, something started to feel not right. This unease manifested itself with a vague sense of internal discord. I wondered if suddenly, after life with an iron stomach and the ability and willingness to eat absolutely anything, I was developing some kind of food sensitivity or intolerance. It was nothing specific, but things got sort of grumbly down there in my gut. I started trying different eating regimes with no real discernable success. This lack of clarity led to more questioning, was my mental state leading to gut imbalance or the other way around? (Science has yet to really answer this question, but it now seems clear that mental state is strongly influenced by gut flora!). I was running some, and had in fact, been unlucky enough to lottery into the Mt. Washington Road Race for a second time (unlucky you say? Well yes. Have you ever been on the Mt. Washington Auto Road?). That summer my husband was helping friends in Canada build their timberframed workshop, staying with them for a week or two at a time, while I held down the homefront back in Maine. He became really connected to the close knit community of our Canadian friends, and when tragedy struck that community it hit us both very hard. Our friends’ sister in law Kate went out for a walk one day and collapsed and died in her drive way. She was in her early 30’s and had two young children. She also apparently had a known but untreated heart condition, but at the time that wasn’t clear. All that was clear was that this lovely young woman, who worked hard, ran a homestead and had the loveliest rosy cheeks of good health dropped dead under a blue sky on a beautiful summer day. Kate’s death hit me hard, even though she was at most a sweet acquaintance. The fact that some one I knew, some one my age (or infact younger), could come upon death without the faintest clue or suspicion, rocked me to my core. I’d watched my father die, and lost most of my grandparents, but this death was so out of my realm of experience my mind couldn’t process it. Maybe it how I first encountered my own mortality, or maybe it wasn’t all that cliché; all I know is that Kate’s death terrified me. In much the same way that after I had been bitten by a dog while out running one day years ago, and then stopped road running because I was sure that every loose dog I encountered would bite me, I began to doubt the resiliency of my own body, and was sure that every strange flutter, shudder or gurgle was my own mortality knocking.
It wasn’t until several weeks later that I started having full blown panic attacks. Racing heart, palpitating, short of breath terror stricken panic attacks. Convinced I was dying panic attacks. The first time it happened I was home alone and so sure I was going to die that I called an ambulance for myself. Many nights I sobbed and shook and clutched my husband, unable to lie down because when I did my heart felt like it started doing strange things. The doctors made me wear a cardiac monitor for a month (note to doctors: that didn’t help calm a nervous person—in fact it made a nervous person even more nervous), they gave me a prescription for Ativan and a clean bill of health. In the mean time my mental state got more and more perilous. My nerves were completely shot. I felt shattered, utterly fragile, and completely unlike myself. I realized that I was going through a nervous breakdown, in the classic, old school sense of the term, and was completely blindsided by this new anxious dimension to my personality. It took several months to slowly make my way out of the jittery jangly mind state I had found myself in, and it was only through being patient, understanding that there was nothing physically wrong with me, and working with several mind and body practitioners who helped me settle down that I began to regain the confidence to be in touch with myself once again.
By the new year I was starting to pick up steam and feel like a normal human being again. I gradually was able to start to trust my body and fully accept that while we all die, I was not going to die of any latent medical anomaly anytime soon. We got a second dog (one small enough to hold like a baby, a big baby, but a baby none the less), I was able to be coherent with friends again, and life was looking up. Then in February I got the flu, the full on 100% influenza virus and was laid up for over a week. Soon after that my intestinal distress began in earnest (Over share warning: “intestinal distress” being code for diarrhea). This distress continued for weeks, accompanied by a fever and increasing malaise. I lost weight. I stopped taking the stairs to my fourth floor office (that’s when I knew I was really sick, the day I took the elevator). Normally I am full of energy, enthusiastic and fully participatory. Now I came home from work and went directly to the couch to curl up. My husband commented that I had become a black hole, sucking all the energy from the room. My doctors tried a few things, and then sent me for a colonoscopy (never had a colonoscopy? You’re in for a real treat when you finally do get to have one.) I went to fill the prescription for the electrolyte solution you drink the day before the procedure to clean out your guts, and the pharmacist handed me a gallon jug. A Gallon Jug. That was a wake up call. I drank as much as I could over the course of the day until I started vomiting it back up, and decided I was done. My guts were pretty clean already considering my previous three weeks.
The gastroenterologist’s verdict was clear and unequivocal, I had Crohn’s disease, a version of inflammatory bowel disease. Crohn’s and IBD are autoimmune diseases, meaning the body’s own immune system attacks tissue in the body, causing the debilitating symptoms. The symptoms can quiesce, only to flare up again unexpectedly. He wrote a prescription for prednisone, a steroid, told my husband that it would make me very cranky, and sent us on our way. Stunned, but motivated by at least having an answer, I started to learn about this new facet of my life. I responded pretty well to the steroids (and they didn’t actually make me that cranky) and started feeling better, better enough to start running again. In the summer of 2010 I ran a half marathon as part of a fund raising team for the Crohn’s and Colitis Foundation of America, later that fall I ran a half in the White Mountains with my girl friends. I noticed however, that even though I was running, I was getting slower. My half marathon times gradually got longer and I felt like I was running out of juice. And in fact I was. Although the steroids helped, you aren’t supposed to take them long term, and the next step drug, a wildly expensive souped up version of aspirin wasn’t really working. The next step up from that was immune system suppressing drugs, drugs first developed for chemotherapy and organ transplant patients, drugs that when I opened the bottle reeked like pesticide. I refused to take them. And so I gradually declined, losing all energy. After the White Mountain half marathon I stopped running altogether.
Instead of the purely western medical route I tried many alternative interventions. I ate lots of kale, I gave up kale, I ate high fiber whole food diets, I ate low fiber diets, I went vegetarian, and gluten free, I went grain free, I ate a half a stick of butter a day (on doctor’s orders), I cleansed, I gave up and ate ice cream. What I learned (after 3 years of being stubborn) is what a naturopath I saw told me on our first appointment—diet didn’t cause my Crohn’s so diet can’t cure it either. I worked with a different naturopath who encouraged me to explore the link between stress and my symptoms and restart a meditation practice, had me try different supplements, and ultimately told me not to be afraid of the western medical drugs when all the alternatives failed. While none of these therapies “cured” me, all improved my quality of life, and I don’t discount the time and resources I spent pursuing them.
I spent 2011 going to work and coming home and not much else, no running, no walking or hiking, nothing. Low grade fever and lethargy dogged me at every step. The black hole was back. In early 2012 my naturopath was running out of options and had me try was DHEA, a natural steroid precursor that apparently could get me banned from playing professional baseball but it actually helped a little bit. I started to brighten in the late winter and early spring of 2012, and I’ll never forget the look on my husband’s face when I suggested that on an upcoming weekend we take a drive down to Acadia National Park and go for a little walk. This was the first thing I had wanted to do outside for a year. It was February, and our walk consisted of going to Sand Beach and sitting in the sun bundled up in our winter clothes, and it was pivotal. That spring on DHEA I definitely improved, but not enough to run, not enough to go to yoga class without being destroyed. I had more energy to do things, but the aftermath of exercise was intense. I wasn’t able to recover like I should have. So in the summer of 2012, I switched gastroenterologists and relented (on the advice of my naturopath). I would leap frog over the nasty pesticide smelling old school immunosuppressing pills, and go straight to the fancy new genetically engineered targeted immune suppressing twice monthly shot, the one that could give me blood cancer and heart failure but stood the best chance of truly restoring my quality of life. And much to my surprise, it worked. It’s been two years now and I have my life back (and as of yet, no blood cancer, no heart failure). My immune system is weakened, and my body takes longer to heal and recover, but I’ll take that trade off to be able to ski and run and put in long hours in the garden. I feel that I am running at 90-95% capacity of my old self in many ways, though some times it isn’t clear if it is Crohn’s or simply aging that accounts for the difference. Things in this new reality are a bit different, I still take much longer to recover from an intense work out, and it is clear that inflammation and the immune system are linked in ways we are only just beginning to understand. I also have to work actively and consistently to lower my stress level, and that stress is a trigger for my symptoms. I will always wonder, was that nervous breakdown in 2008 a symptom of what was going on in my body, or an additive factor? Did the stress of that episode trigger some genetic susceptibility, and did getting the flu slip the immunological switch permanently? I’ll probably never know for sure, but the fact that I CAN work out, or go for a long run, (or be a useful member of my community), this is nothing short of miraculous.
When I was sick, and even before that, I waited a long time for yoga (and kale) to save my life. I thought following my friends up cliffs or out on to the water would do it. But in the end I succumbed to the oldest of pass times, putting one foot in front of the other in the woods, on ridges and rocks, shorelines and trails. Two years ago when I started to feel well enough again, I started a Friday afternoon tradition, a trail run behind my house, with my dogs, to wash away the stresses of the work week. It was a gift I gave myself, and a reminder—you got this back, never take it for granted again. Those Friday trail runs blossomed into a full fledged habit, and a willingness to say YES, because I don’t know how long this is going to last. It is likely that the effects of this drug might wear off, and I will be back to square one. Until that day however, you’ll find me out there, no watch, no phone, no ipod, putting one foot in front of the other, listening to the birds sing, and stopping to eat trailside berries, always grateful.