I once heard Hunter Pinke say that he doesn’t ask, “Why me?” rather he asks, “Why not me?” (If you don’t know Hunter’s story, Google him, and I dare you to watch any one video interview of him without a Kleenex. He’s a superhero.).
I too understand and accept that really bad and crummy things happen to good people. When someone asks me the nuanced question of “How did you get this,” I usually respond with, “Just my good luck, I guess.” There is no answer as to why with my AE.
Along with, “Why did the AE lightning bolt strike me?” I can ask a million other whys. Why does this illness present like a horror story? Why do some people respond to steroids and others don’t? Why am I still so damn tired? Why do crowds bother me? Why hasn’t Elton John called me back? You get the drift.
I hit a big hurdle in March, and I’m still not quite over it. I have felt panic, anxiety, depression, fear, intrusive thoughts, scary flashbacks, exhaustion, more anxiety, and chest pain. The day I felt the first dreadful wave of panic, along with the physical pain, my mind took me on a ride. I’ve doctored quite steadily since. Doctors, specialists, tests, clinics, time at the hospital, and more, for over a month.
Why do I feel this way? Why won’t this stop?
Is AE coming back? Why now?
I’m a logical and analytical person. I like to ask questions and have answers.
But because underlying it all is a complicated and rare disease, why isn’t easy for me. I’ve had to painfully learn that you can’t always understand, why?
Thankfully, through my support system, counselor, and a lot of doctors who work hard to keep my “genie in the bottle,” I’ve been battling through it, and am slowly getting to the other side. And lucky for me, I’ve had relatively few nasty setbacks since I hit the one year remission mark. Now after facing this past overwhelming month, I’m starting to believe that setbacks can be helpful. They suck to get through, but they show me that I can. I will. This too shall pass. I’ll figure it out. People are here to help.
I’m also learning to let go of why? Asking why about my situation isn’t helpful, but answering the what, is. I have to find my whats.
What helps settle my mind down? What suppresses triggers? What brings my spirits up? What works for me? What keeps me going each day? What keeps getting me out of bed?
Although I’ve sworn to will AE away forever, I cannot stop or prevent a relapse. What would I do to conquer AE again? I cannot tell my mind not to race or be panicked. What can I do to rise up against the fear?
What works for me: patience (I didn’t say I liked it, I said it works), time (not fun when it’s the emotional equivalent of watching paint dry), rest, prayer, support, friends, generosity, exercise, writing, meditation, my family. Finding inner strength through my mantras: “Just Keep Swimming,” “Better Days Ahead,” and #StebbinsStrong.
If you’re facing a why right now, I’m sorry. If you feel all over the place, I hear you. But if you can, if it will help you, turn the why to what.
What worked for you today? Whatever it is, whatever you need, keep it up. And know that I’m right there swimming along with you.
"As I crawl beneath this torture you adore
I fall face to face with my scars you've ignored
"So tell me why it don't feel the same
Tell me why I've got to feel this way
"Now I pause to let my silence scream tonight
Awhile you roam like a serpent satellite" ~ Why Pt. 2 by Collective Soul