Moving on with Pompe. It must be done. The world moves on, and you might as well move with it. With Pompe Disease, this is often a challenge, but with trying times comes strength. As someone with has struggled to find a diagnosis, and having it for just under a year, the struggle is real. Moving on largely comes from within for me. Accepting my shortcomings, and knowing what the future can realistically hold, both in terms of disease progression and advances in care and treatment is what I must accept and move on.
After 15 years of searching for a diagnosis, I finally got one in May 2018, at age 28, after many clueless doctors, and inconclusive biopsies. While diagnosis brought many answers, it also brought many questions, most of which I will never know the answer to. Pompe is such a subjective disease to begin with, that we cannot project our own path of progression. The sole treatment, enzyme replacement therapy, despite taking hours of our life, biweekly, or more, has no measurement to know whether the dose is enough, though we do know that most doesn't make it into the cells where it is needed. To complicate things further, my body has fought off the infusions with vigor, forming antibodies and allergic reactions, so the question of whether I am getting any of "the juice" is anyone's guess.
To move on, I need to know myself with Pompe. I need to know what to reasonably expect from myself, from others, and be comfortable with that. Lastly, to move on is to progress. If I keep working toward something, I will never stop moving on.
Knowing myself with Pompe. It hasn't been easy. It's still ongoing. Having no metric to compare my physical strength to, besides myself, made the realization of reality harder. About 7 years ago, I had a realization of what I wanted to do for my career, a police officer, after some volunteer police experience. Having never been able to do a sit-up, I always chocked it up to being lazy, out of shape. I applied to states that had lesser physical requirements. I spent the time and money flying out to far states, interview and testing. An obstacle course one state had seemed beyond easy when I watched the video. I flew out to take the test. I struggled getting off the ground after diving under hurdles. I knew it was over when the proctor told me my pacing for the first lap of four was bad. After the diagnosis last year, the trips stopped. My dream is unrealized and shattered. I'm currently at a standstill in life, in regards to my career pathway, but this post isn't about that, it is about moving on, so I digress. Fast forward to March, and I am in the fire academy. No I don't plan on being a firefighter, but I do plan on learning skills, and more importantly challenging and learning myself. Currently the academy is in progress. It is very trying. Everyday I learn that my limits are lower, as expected, but I am more importantly knowing myself, and making the link of where my life is because of Pompe. Things are difficult, not because I am lazy or out of shape (sure, that does contributes some), but hands-on I am seeing where the disease has disadvantaged me. As a class we do hours of physical training and fitness, everyday, in full firefighter turn out gear. Picture one of the everyday activities: While all 20 of us do chair squats simultaneously, calling out what repetition we are on in unison, I quickly fall behind, slowing down after two squats, out of wind, after my body attempts the activity, compensating for having no core muscles. Everyone sees me, everyone stares are me sitting out-of-breath in a chair, while they perform their routine flawlessly. Some know I have some type of disease, others I'm sure just think of what I once thought of myself... weak and severely out of shape. Mentally this is the hardest part of the class; seeing others effortlessly push forward, while I can't do anything but try and accomplished much less. But see, this is moving on, this is recognizing where I am, and what I must accept. This is moving on, this is strength. I'm pushing forward in this class, giving it my all, my best. I'm learning myself and learning to accept it, regardless of what anyone else may think.
To continue moving on, we as Pompe patients must strive to move together. I move on by taking an active role in the development of our future. Any chance to advocate or innovate our lives with Pompe must be acted upon by you and me. We cannot move on to bigger and better things unless we take initiative in achieving change. I cannot wait to "move on" with better treatments that will make for a better standard of living. To progress, we must move on!
Sean Doerr, 29, USA
Sean Doerr, 29, USA
