Exactly one year ago, I was in the hospital sicker then I’d ever been. After being diagnosed with Serotonin Syndrome, the decision was made to cold turkey me off of over 50% of my medications. I spent 8 days in hospital going through such intense withdrawals that I thought I was going to die. That same week, I had an MRI that would identify the cause of my pain. Less than 3 months later, I would be having my second brain surgery. April of 2019 changed my life; it was simultaneously my bodies breaking point and the resurrection of hope within my mind.
I’m now over 9 months out of that second brain surgery and my life has changed immensely. I still battle Trigeminal Neuralgia every day, I still take over 20 pills a day, and I’m still not able to work or go back to school. However, I’m getting up every morning and making the bed. I shower, get dressed, and brush my teeth. I’m playing more music and writing more blogs. I’ve been going for walks and even driving now and then. These may seem like simple tasks that the average person doesn’t even think about throughout the day, but these are things I wasn’t able to do before surgery.
A few months ago, my doctor asked me to put a percentage on my ability to do “able-bodied tasks”. After some thought, I said “I’m able to do 25% of the things the average person can do.” I cried after that appointment. I cried because I went through so much just to get to 25%. I cried because, at the time, I thought that meant I was 75% less worthy as a human. What I wasn’t doing, was acknowledging the progress I had made. Even though 25% is much lower than I want, it’s a damn good step in the right direction. Also, thankfully, I remembered that worth is not defined by the amount of things you can and cannot do. This has opened up a much bigger thought in my brain, though. This rapid shift in abilities has caused me to question my whole identity as a sick/disabled person.
Before my surgery, I could always count on one thing… being in pain. Perhaps surprisingly, with the pain came a certain amount of routine and stability. Without fail, I could expect a flare, a Dilantin infusion, 1-2 days of rest afterwards, and 3 days of “normality” before I started flaring again. The cycle continued every week. I never got my hopes up when it came to things I was looking forward to. I was able to accept that it probably wouldn’t happen. If it did happen, it was an exciting surprise, but I kept my expectations low. As horrible as that all is, there was a certain calmness in the predictability of it all. After surgery, I lost the predictability. I can go a whole month without a major flare. I can go to a concert one day, walk in the wind the next, and be totally fine. I could also pluck my eyebrows the wrong way and end up in the hospital (that literally happened in February). There is no rhyme or reason for it now and that drives me crazy sometimes. Come to think of it, there’s a lot of things I’m struggling with that I didn’t necessarily expect. I fall harder because I get my expectations up. I struggle with calling myself disabled because I’ve been having more good days, even though I’m still only functioning at 25%. I get upset with myself for having a bad day because “it was worse before surgery”. I have a panic attack everytime I need to take “as needed” medication because it reminds of what life was like only a couple months ago.
Even if I had walked out of that surgery completely pain-free, I feel like I still would’ve struggled with these thoughts. Chronic pain is incredibly traumatizing. It’s something that affects every moment of your life; the good, the bad, and the ugly. It’s constantly changing. It changes who you are, how you react, and even sometimes what you look like. Coping with that is fucking difficult. But for now, all I can do is keep battling this. I’ll keep getting up in the morning and making the bed. I’ll take my 20+ pills, shower, get dressed, and brush my teeth. I’ll keep playing music and writing blogs. I’ll go for walks and drive every now and then. I’ll go to the hospital and take medication when I need to. I’ll acknowledge the difficult changes and be grateful for the good changes. It’s been a crazy year, but I have a lot to be thankful for and a lot to look forward to. Thank you for being my stability in an unstable world.