I’ve been trying to write this post for three days now. I want to scream at this screen because I can’t get the words out to match the emotions.
I sat on an exam table Thursday in an old room exactly where I was six months ago. I only half listened per usual, waiting to hear the words “you’re cured Merideth.” It’s silly I know, this is something that I have been waiting to hear for 3 years now and I know that by now I should let this hope go and just appreciate the little things, and I do, I appreciate them so much, but I still hold on to the hope that I will someday hear those words. And I’m sure I will someday, but it just doesn’t feel like I’ll hear them soon enough.
So instead I sat on that table and was reminded that nerves take years to heal, that this is not a race this is a marathon. And I felt numb.
I was told that currently according to my numbers my body shows no symptoms of POTS. And while everyone else was tremendously happy for me, I went numb. I thought in my head “Gee I wonder why, maybe it’s the 30 pills I throw down my throat everyday, maybe that could be the reason why!!!” I tuned out the rest of what he said and picked up the part where he explained that the years to follow will be a long process of eliminating medications in hopes that this will show my body has healed and will no longer be dependent on the chemical drugs to function.
And while everyone else felt relieved, I felt numb. I don’t question why it happened anymore, I let that go a long time ago. I’ve moved on to wondering when things will just be over and when I can just move on from all of this. So, as he explained the process that’s ahead of me my mind was suddenly filled with flashbacks to the first time my body came off of a medication and the withdraws that followed it. I remembered the feeling of bugs crawling on me, and the terrible exhaustion that covered every inch of my skin. And sitting there, remembering, my body went numb.
Now I’m not saying I’m not happy here, I’ve come a long way, a really long way, I’ve become content in this body, but here, right now, I’m tired. I wish there was an off switch that I could temporarily turn on to escape this body for just a while and live in a healthy one, because I’ve forgotten the feeling of running down the street without my lungs feeling as if they’re going to give up on me. My legs twitch, and my body shakes, my eyes carry heavy bags under them and my muscles are so very weak. My body is weak, and there is no off switch. And so today, I feel numb.
I’m not sure if I will ever let go of the thought or hope of being “cured,” I’m not sure if there even is a cure. After all there are so few patients in remission/no longer showing signs of this disorder that it’s so hard to tell a patient what a future life will look like after being claimed free of POTS. I’m not sure if my body will carry side effects from all of the chemical drugs over the years. I’m not sure if my body will regain the nerve strength it once had. I’m not sure if my brain will ever fully heal from everything that has happened. So maybe that’s the weight I carry so heavily every six months as I await the words. There just is no certain path of recovery, there’s no plan of what to expect. I’m walking into a dark cave with no pathway outlined. But then maybe that’s the good in all of this. I don’t have anything to compare this journey to, so I can’t feel defeated because well there’s no comparison. But as I stare out into the world today wondering where it will take me, I feel numb.
Out of all of this though there’s one thing I am certain of: I am always stronger. Tomorrow will always be a new day and it will be filled of opportunities. However, today and tomorrow I will feel numb, because once again the unexpected is settling in all over again.