When you are chronically ill, you experience a cycle of grief. You grieve dreams, opportunities, normalcy. The grief curve becomes a circular trajectory of ok and damn right sick as a dog. When you don’t have an umbrella diagnosis, your periodic illness crisis are even more trivialized by doctors, family and friends. There is just this person who ends up in the hospital random times of the year for various reasons – none seemingly related. Just one big glob of fuck up!
It’s easy to get caught in the darkness and not have an f’n clue how to get off this ride.
I waver going back and forth between giving up and not. Intellectually I know I can’t. But, sometimes like now… When the doctors are clueless and I’ve done all I can do, I don’t what’s left. I can’t give up, my babies need me. But at the same time I feel like those bedridden people on ‘My 600lbs Life’, dependent on them at the worst times for food and water and help to the bathroom. I am clear I don’t always make the best choices. But I have been making better health choices. I drink more water, I eat better, I excercise. Truth is, I’ve been sick over 20 years. My good days are probably your bad days. And in my heart I wait for each little bit of ‘act right’ from my life to make it through the next mini-crisis. It’s a scary and lonely place to be because there has been no answer, yet. The hysterectomy was supposed to end all the pain. But it didn’t end the little-big crisis that end me up in the hospital a couple times a year. I know it’s all related but the docs have yet to figure an umbrella diagnosis. But truth is they may never in my lifetime. So am I to give up? Honestly, I can’t but some days are so bad that if I didn’t wake up, I couldn’t be mad at God either. Until then, everything you see me do realize that is my way of not giving up. So it may not be as vivid a goal as the size 4 or 6 you will be in soon, but it’s the small victories for me. The days when I can do stuff like work on my entrepreneurial endeavours and movie night with the kids. But my victories seem fewer and far between. I’ve been fighting for over 20 years so I am just a lot battle weary. I have to soldier on.
The sad part is none of this is attractive. None of this says ‘I wanna be on that team’. So I may be alone the rest of my life. This ain’t the life the average person signs up for. No matter how dope I am when I am well, no matter how hard I ride when I am not sick. So many days when you ask “How are you?” Know that I must put my brave mask on and say ok – but I’m not OK. This is a lonely road with lots of valleys and especially when you are all you got. I’ll be ok. Not today, but eventually.