Tenacious ME
Tackling disabling autoimmune disease with obstinance and humor.
Why I am getting off the fear train
Are you tired of the 24-hour fear train? Of playing hide and seek with germs? Of watching the days of the calendar tick by as you wait for the world to pull itself together? If you’re like me, you’ve had about as much of this circus as you can handle. I’m at the end of the line, getting ready to hop off. I’ve waited patiently for the train to pull into a station where we can all safely disembark. Since it hasn’t even slowed down once in the past two months, looks like its time to tuck and roll. So, I’m going to jump off this crazy train and back into life, or whatever parts of it are still open.
Before you decide I’ve just lost my mind from too many cooped up days, let me reassure you, that’s not it. Not entirely anyway, though my mental health is definitely involved in weighing the decision and one of the driving forces, it’s not because I’m nuts that I am going back to the real normal (you can keep your new normal). I am going back to preserve my mental health, but more than that, I’m returning to my normal life because I don’t believe in living in fear. You either tackle the problem or you run from it, cowering in the corner is not one of the accepted responses in my book. After all, it’s called the flight or fight response, not the flight, fight, or fetal position response. Unless you are being mauled by a bear, the fetal position leads to nothing but peril. It makes you vulnerable. As uncomfortable with vulnerability as the next guy, that’s not a place I can hang out. Honestly, I’m impressed I lasted this long, my fight response is strong. I am not one to back away, let alone turn into a cowering puddle. Nope, I am not doing that. I can’t cower in fear, I tried, really hard, to respect the fear of my loved ones, and play by the new rules, but as the restriction to my life look like they may end by Fall, if we’re lucky, its time for me to go back to living life, dangers and all.
No that was not a typo, I’m going back to my life of dangers, because for me, that’s the reality of life. I’m not blessed with a fear free life, with good health and easy days. Mine has been one of struggle and hardships, of constantly putting on the big girl panties and getting on with it even though it completely sucks. A life of adaptation. A life choc full of danger from internal and external forces. In my experience, you either find a way to conquer the fear of the dangers you face, or turn into a weeping ball, there really isn’t much room for middle ground when it comes to life with chronic illness. Flight isn’t an option when the problem is literally carried inside of you. Good luck getting away. So, live in fear or learn to push through the fear and grab onto the living left in your life.
It’s called the flight or fight response, not the flight, fight, or fetal position response.
Having a disease that could kill me if left untreated and might kill me even with treatments, a disease that weakens my immune system leaving me susceptible to everything from the common cold to an infected toe, a disease which requires me to take dangerous medications that also might kill me, has taught me to handle fear of dying in a way many probably never do. When potential death lies down every path you could possibly choose, when it becomes a constant companion, you get used to it. You become accustomed to knowing you could die sooner than you once imagined. That ticking clock informs many of your decisions, though often not in the ways one might imagine if they can’t hear its incessant ticking. Death lurks in the shadows, waiting, will you walk straight into his arms or run the other way, knowing he’ll still be right behind you? Never a fan of strange dudes who lurk in shadows, I choose to walk the other way. To leave death trailing me, aware he’s there, but not worried about when he might tackle me. As a very wise man once told me, when your number’s up, your numbers up. Words to live by, words I wish I’d heard sooner.
Anxious since birth, I’ve let fear rule my choices most of my life. What ifs have won out over what could have been, over and over again. It seems the saying is true, you only regret the chances you didn’t take. Being sidelined from the career I dreamed of before I ever really took the chance to make it wonderful, haunts my disabled life. Had I pursued it full force, moved somewhere unfamiliar to take any of the amazing opportunities that were available and put myself out there, I might have been in a position to oversee science work by the time my body called it quits. Not working so hard physically might have given me extra years of mobility. The mights and the should haves pile up, forming a wall between what is and what might have been. On the other side, lay many of my dreams. Oddly enough, the constant threat of death brought by chronic disease, is what finally taught me how to live. It reminded me what was at stake. My life. Not only in the biological sense, but in the broader sense, the essence of my life. For life is indeed not measured by the number of breaths we take, but what we do with that breath. I spent far too long holding mine. Far too long holding back in fear.
Realizing it could end any day, really taking that message in and hearing it, changed everything. The mountainous troubles of everyday life shrank, the beauty of the everyday moments grew. Time spent doing the little things became precious as my body became stubborn and unwilling to do the most basic tasks. Eventually, for the transition was slow and painful indeed, fear faded into the background as the fight to preserve my active life took over. Faced with uncertainty concerning the quantity of my life, I did what any sane person would, I turned my focus on squeezing as much quality out of it as I can. This situation? This is stealing quality from my life, and I’ve fought too hard for too long to let it take that from me.
The fact is, I know my days are numbered. I know I am unlikely to get as many as the next guy. I know at some point, there won’t be the option of repairing the damage, and I will be immobile. I know the medication I take might destroy vital organs or leave me susceptible to death by infection. Life has forced me to take chances simply to remain mobile and alive. I’ve made my peace with that. COVID-19? Just another in the very long list of diseases that might wipe me out if I catch them. Diseases those around me frequently pass without even a thought about the danger they have to folks like me. Colds, flus, strep, a bad pedicure, any of that can take me out of the game for good. I could choose to spend my life secluded, on guard against germs…or I can choose to live life with a bit of common sense and caution and hope for the best. Hope? She’s my girl. Through everything, hope has been there for me. Hope keeps me moving forward, even though I can see death in the shadows. She holds my hand when the times get rough and gives me the strength to look fear in the face and say not today.
Today I’m going back to choosing hope. I’m going back to time with beloved friends and family. I’m going back to kissing babies, because babies smell like miracles, and I miss that smell. I won’t be shaking hands, I do like that change, with sore hands that has made me cringe for years, but I WILL be hugging again. I will be hugging anyone who lets me, because if there is anything the world needs right now, it is a nice big warm hug to chase away the fear and remind us we are love.
Tenacious ME 
What a wonderful artcicle that you wrote.
It kept me captivated until the very end.
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Glad to hear you are being sensible about entering the world again.
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