I said the next post would outline what helps, but I have had something else on my mind for some time now. I’ve been having some dark thoughts lately and struggling to keep my death grip on hope. When this deal started in 2011 and I had to leave school, I thought I would go to some appointments, get a handle on whatever was happening, get some rest, and get on with my life. Instead I went to many many appointments and battled to find doctors who would believe me. I thought when I got the diagnosis and a medication regimen that I could move into the maintenance stage and get back to living. That hasn’t happened yet. Then I started having trouble walking and they told me it is unrelated to my condition. It’s something else. Something else to diagnose, test, and define. My heart sank. I thought about all the time and energy I had spent to get to where I was and that I was going to have to start over. Three years straight of appointments and tests, and now that I’m working I have to figure out how to manage my health and do these appointments. Can’t I take a vacation and have some normalcy? Just go to work like normal people and not have to ask myself every single day “Am I going to make it today?” I have to accept that the chaos has become my normal.
I had an appointment at Stanford this week and I cancelled it. I keep thinking “What is this all for? What am I getting out this? Am I going to have to do this forever?” I know there are more tests on the horizon, more medication changes, more trying to figure out how to do all of that while working and maintaining a semblance of a life. I am stubborn and determined to an absolute fault. The first two years of this thing I went to all of those appointments and fought hard to rebuild my life without question, but I feel that fight fading right now. This isn’t me. This is not who I am. I am a fighter to the core. How do I keep up the stamina to keep doing this?
I can imagine a better life where my symptoms are managed, where I’m not going to constant appointments, where I'm not missing work because I’m ill, and I have a life with hobbies and passion again. I can see it and I will keep fighting for it. My stamina is waning but I have the muscle memory of courage and perseverance to rely on. I can press on. The fight will come back. I know it will.
I’m going to share some of the writing I’ve been doing for myself the last few years. Here’s a poem I wrote about the very first test I did in September 2011 before I was officially diagnosed. It was an echocardiogram. It was the first time I had to intimately experience the fragility of my own body and life, an intimacy you have to learn to get comfortable with in the battle with chronic illness.
She said lie still, pressing sound waves into my chest
Wrapped in linen, I saw the open of my heart
Bouncing, auditory unrest and electricity
Black and white fabric of innervation
I stared into the Gorgon of mortality
I could bite it. Rip the skin. Tear the flesh
Taste finality in song
Unfurl this skin and find the final gate
Heard the swirling of blood, the violence of life
I looked inside
And gaped with savagery. It was unknown to me. A figurative lesson no more.
I saw the open of my heart and wanted to crawl inside
My essence—like coming home