It is funny. Not laughable funny, but ironically funny. I have been aware of death on some level since I was a young boy. Pets, relatives, and friends have journeyed beyond. Some hurt more than others. Such is the conundrum of mortal life. Being told I had an incurable disease put a whole new perspective on mortality. I remember experiencing a fear that I have never known before. Fear of leaving my wife and infant daughter. Fear of missing the future that we had planned for. I used to think that I had a real grasp on mortality. Having worked as a nurse aide and a nurse for more than 19 years, I have seen enough death to be comfortable with end of life events. Some traumatic some palliative, but all deaths had similarities. It has always been someone else’s death that I was witnessing. Never fully contemplating my own mortality.
I never let on to my wife, family or friends how truly afraid I was. I wanted to put up front a confidence and calm so that I was not treated any differently. However, on the inside, when I was alone in the hospital, after discharge (and especially while sitting in the infusion recliner) I spent quite a bit of time “future tripping.” I was stressing and worrying about what I could not control. I would think to myself: “Am I going to be using a cane or be in a wheelchair tomorrow? How can I work as a nurse if I am handicapped and how will I take care of my family?” All of those fears did nothing except exacerbate my anxiety and force me to further isolate myself emotionally.
My prognosis was relatively positive and I began treatment very early (approx. 8 weeks from onset of symptoms). All in all, I should have been relieved. Relieved that I did not have more serious symptoms or any real lasting disabilities. My most limiting symptoms were vision changes and balance issues. After 6 months of Tysabri infusions, my symptoms had all but resolved. I was even able to get the prism removed from my glasses. I no longer had double vision and my balance issues had improved. So what kept me from being active again? Fear. I had experienced a few “pseudo exacerbations” of my symptoms when my core temp got too hot during exercise or while taking a hot shower. Pseudo exacerbations scared me. I was afraid the flare up of symptoms would not resolve. Even after a doctor’s appointment where my wife asked questions for me, Dr. Laganke assured me that the pseudo exacerbations were temporary.
Even after being reassured, I was still too afraid to push myself into fitness like I had for years prior. CrossFit had been my go-to for several years before my MS diagnosis. I had come to terms that I would no longer be able to do CrossFit. When I met a friend through our shared MS diagnoses we started discussing fitness and she eventually got me into riding a mountain bike. It felt great to be active again. I was able to push myself physically and see that the symptoms that flared up during exercise were in fact temporary. After many months of mountain biking and numerous requests from my wife and a few close friends, I returned to a CrossFit gym. I did a few workouts with my buddy at his gym and felt good about attending a workout class. At first, I scaled a lot of the movements and did some balance specific work. I was watched very closely by my wife, friends, and coaches. After a few months of scaling and doing different movements, I was back to doing WOD’s (Workout of the day) and feeling great.
Nowadays, my pseudo exacerbations are few and far between. I have no limitations except the ones that I place on myself. Fear is no longer the driving force in my decision making. I understand that if I do not do the little things every day to keep my symptoms at bay, then I am the one to blame. Not my MS. I have been given a great reason to exercise, eat right, get plenty of sleep, meditate and do yoga.
I can spend my days in fear or I can spend my days in gratitude for the amazing gift I have been given. Perspective shifts are not easily acquired for me. So I choose to be in gratitude for this life and all I am able to do
Garrett Owen and Emily Garczynski