It’s been 4.5 years since my initial onset of Transverse Myelitis. Four point five years…. I’m just going to let that sink in for you and me for a moment. As I sat and filled out my disability renewal paperwork, I felt extraordinarily frustrated. Why am I not “Better”? Why am I STILL checking all the boxes?! I asked my neurologist the same thing at my last appointment. I don’t understand. I’ve done all the “right things”. I eat well, go to physical therapy, to cognitive function exercises, stay positive (mostly) and hopeful. But here I am…. 4.5 years later… and all of my work has not willed my body to heal properly. There’s still a disconnect from my brain to my legs, from my brain to my brain! (It’s like the hamster forgot how to use the wheel!) What is it in my body that just refuses to heal?
Don’t get me wrong, I’ve adapted, so much so that sometimes I forget my limitations…until I forget my limitations. (Dear Stadium stairs, we are not friends) I have joy, love, and peace in my life and I’m abundantly grateful for that. It’s just that sometimes we miss the “old us” right? We cannot believe we have lived with some super weird and debilitating disease for X number of years and still haven’t gotten better. We cannot believe that we’re not back to working, kayaking, mountain climbing, or whatever it is we used to just get up and do!
And then there are the other people in our lives. We worry that we have disappointed them. We worry that they don’t understand our limitation or worse yet, we worry they think we should be better by now too! Oh the fear of judgment! But what can we do about those people? We can educate… but when it really comes down to it, opinions are like noses (or other body parts), everyone has one. If we spend our time trying to convince judgmental people that we are truly battling every day, then we steal away precious time and energy from those that love and accept us.
And so here we are, X amount of years later… still dealing with this illness. There are going to be days when we wonder “WTF?”, wonder why we are not better, ponder the mechanics of our bodies and think “Geez, this sucks”. That’s ok. But here’s the beauty of it all, We are still here. We are survivors, warriors, and triumphant. We have lived with our conditions and have adapted. We may not be capable to walking well or completing a full sentence without completely derailing from our train of thought, but by God we are here. We can still experience love, joy, peace, and beauty. My body super sucks, but it can still hug my kids, watch them play, and give words of hope and encouragement. I think I can live with that.