This is not a happy post. This is about processing my disease and what it has done to me. I’ve been going through a private struggle. I haven’t admitted it to anyone. While I am sure my husband has seen some of the issues surrounding it but he has no idea just how deep it goes.
I am so embarrassed by the fact that it is affecting me so profoundly. I am, or at least I should be better than this. But I can’t seem to handle it… ok, so, I DO handle it, just not in the best ways.
I’ve stopped going out alone. EVER… I no longer look in mirrors… I hide behind make-up, hats and scarves. I try not to smile or open my mouth too widely… I try to dress in a way that looks so pulled together that it overshadows my head and face.
A few years ago when I met my husband I looked as I do in the photos above. I was confident about my looks. I felt beautiful. I was outgoing. I could be the life of the party. I loved going out and being with people. Since, May 2015, that has all changed.
I have aged 10 years in that short time. My once healthy hair is now a very close crop. My left eye is routinely much larger than my right eye… Some days I want a “Glenn’s my Daddy” T-shirt… I limp… I grunt when I try to move too fast, so your normal pace is my running and grunting pace… I randomly will cry out or jerk violently as lightning bolt pain shoots through my body… It’s rather difficult to maintain your composure when you just shrieked in a strangers face… Sometimes I cannot even hold a simple conversation… I will just keep forgetting what we are talking about… I’ll forget things mid sentence… I mumble as I scramble through the vocabulary list in my head, trying to find the right words. This also leads to blurting out random word definitions at the person I am speaking to as I try to find the words I need… Add to all of this, my constant companion, pain…
I just can’t do it. I feel like I am trapped in a Disney film, suddenly cast as the witch or beast. It is ripping apart the very fabric of who I am… Like Pavlov’s dog, I sit, I yearn but I do not try anymore because the pain has become too much.