highs and lows of expectations


By: Autumn Smith



"How does it feel to have your life back?!"

I get asked this question a lot now, but I still don't have an answer. Three months out of surgery and still feeling like I'm deep in the dark hole of chronic illness, that question quickly sends me into a panic. When WILL I have my life back?


Right now I'm still dealing with pain daily, more chronic migraines than usual from the change in hormones, and menopause is making me feel like I've repeatedly been hit by a truck every morning. But to be quite honest, I don't know if I'm doing all that bad right now. Since surgery, I've had some amazing victories I never knew were possible for me. I was able to experience a heaping handful of some of my favorite activities, but with zero pain for the very first time. I found out what it was like to choose to stand instead of sitting, a strange sensation I hadn't experienced for years. I felt attractive again, I kept some good plans, I had a few margaritas, and I could feel myself morphing into a new woman. I remember being scared and not knowing what to do with myself, and then my time started to slip away from me. 

"My family and friends had expected me to be settled into a normal life by now. Some of them seem disappointed, and some of them seem sad. No one seems hopeful."



This disease is somehow still a mystery to most of us and our doctors, and that fact is becoming more clear than ever to me. I don't know what's going wrong with my body and my doctor doesn't either. The series of events is: I had complications after surgery, healed really well and felt almost 100% better, had some new pain, bleeding, and discomfort, slid right into menopause, and somehow I ended up feeling almost as shitty as before. My first thought, along with my doctor's, is that he actually got me to the point of feeling like a completely healthy, painless person again. It sounds like something went wrong along the way, but this is still a huge success. I have to remember that this disease is doing what it has always promised; it is chronic, and that thought alone fills me with joy knowing that I actually might have a chance out. I've come so far! My doctor is still extremely positive, and so am I. So, why do I still feel like a failure?


This newest journey of mine might be a different one, but other people's reactions are the same. My family and friends had expected me to be settled into a normal life by now. Some of them seem disappointed, and some of them seem sad. No one seems hopeful. It doesn't help that I lie constantly, but if you see the reactions from people when you tell them the truth about how you feel you never want to tell the truth again. I need to remember to teach instead of to expect everyone to be fully informed, and more than anything I need to remember that they only want the best for me. They want me to be better. That's all I want as well, and I might be the only one who knows that's still going to happen. 


I'm in a limbo of knowing my potential, feeling excited for the future, trying to stay positive, managing new symptoms in my new body, and still somehow feeling like I'm letting everyone down. This isn't about them, though. This is only about me and my body. I do have to think - what could my body accomplish if my brain believed in it again? What could it do if everyone believed in it again?