Sometimes on my good days I find myself saying, “I almost feel normal, like my old self!” But really, I don’t remember what normal me felt like. I don’t remember her. I don’t remember her emotional or physical abilities. How she accomplished the things she did. How she went to college, worked, moved nine times in 4 years, went out with friends, camped, hiked, ran and did yoga, traveled, painted and sewed, loved life, and had two healthy babies… She’s gone. There were definitely hard times. But she still had so much passion and drive and an absolute love of being alive.
I am gone. Even on my good days, running two errands in a row wipes me out. An exuberant, silly little boy is desperate for my attention and I can barely give it to him. A sick and crying sweet toddler leaves me hanging on by a thread. I can’t even see the damn thread. I have no idea how to just accept this. How to get the joy back. Every appointment, test, new or returning symptom, any minuscule ounce of stress… It just drains more and more of me, when I already feel like there’s nothing left.
I’m so tired if hearing, “But it could be worse.” Yes. It most definitely could. At any moment. For any of us. But that doesn’t take away the pain of the present. It just makes you feel like your suffering isn’t valid or worth acknowledging. There will always be someone who has it worse than you but that doesn’t make your pain less real, unfortunately. If your child broke his leg, would you just pat him on the back and tell him he should be happy it wasn’t his neck? Would that make his broken leg hurt less or heal faster? Because the broken leg is what’s real to him, hurting him, and holding him back. I can be grateful to God and yet so angry at the same time.
I’m afraid to sleep because of what haunts me. Such as, living with the uncertainty that I’ll never find the words to say. Which would completely explain just how I’m breaking down.
• I wrote this entry a couple of days ago but wasn’t sure if I wanted to publish it publicly. I worry about things I say affecting others negatively, mainly my loved ones who have been supporting me through this. I know reading this kind of entry is upsetting to them. However, I also know that when I read someone else’s blog or article that expresses similar feelings, I feel connected, understood, and less alone. So I hope my intent is understood – to help others who are struggling with their health situations, whatever they may be, know that there is someone out there who feels exactly how they do. A friend that I used to work with sent us a really wonderful care package. It’s bright and cheerful and full of fun and comforting items for my family. There is a lot of light out there even when everything seems really dark.