Holy wow it has been a year since I spent three days at the hospital and started this journey. I think it is all still sinking in. A year ago there were questions that didn’t have solid answers, there was so much unknown. In a way my life has changed drastically and in some ways my life is very much the same. I thought this diagnosis might mean so many doctors appointments and lots of medical intervention but my life has not become that and I am super grateful for that fact. So much to reflect on, finding areas of growth, areas that have been a bit neglected, and at the end of the day so much love and support from family and friends.
My memory of those three days in the hospital is a blur of lots of moments. There was so much waiting before getting seen. Then they did so many tests and took so much blood. I remember moments of waking up in a sleepy daze and looking over to see my Mom and Shannon talking to each other, their eyes full of love and concern. Three people from the hospital staff stick out the most in my memory of that stay, none of them are doctors. The security guard that I thought was going to tell me to stop drumming but was in fact enjoying the noise and came over to express his happiness in hearing the sound of a drum. The nurse that saved me from an extremely painful IV when my nurse was nowhere to be found. The transport guy that wheeled me out of the hospital to the car, he seemed to appreciate the way I told off some dude that was trying to ask me about how the food was during my stay while I am getting all my stuff together to leave the hospital and we had really good conversation while he was wheeling me out.
I’ve noted some of the changes that I’ve noticed along the way here in this blog. I need to rest when I need to rest, that one is not really a boundary to push these days. I have to bring ice packs with me when I do outdoor activities, especially in the heat. Heat wears me out a lot quicker. My body sometimes needs cold showers; my brain is still adjusting to that fact. I can still do all of the things that I did before. Sometimes it just takes a bit longer or things just need a bit of extra planning and prep.
The physical stuff, once the diagnosis was firm, has been pretty easy to figure out and talk about. The way things have changed or not is pretty straightforward. Navigating the emotional waters has been a bit trickier for me. The emotions are layered and complex. There isn’t this huge cloud of unknowing angst hanging around my head like there was around this time a year ago and for a few weeks after. But sometimes I get mad or frustrated with myself when I have to slow down because my body can’t keep up. I do realize that it is better to slow down and take care of myself rather than burnout though. I’ve been eating pretty well and staying hydrated. When Shannon and I are working together she keeps a lookout for some of my overheating tells and double checks that the things needed to keep me cool are packed because sometimes two brains are better than one. One of the physical tells for me overheating is that I get red around my lips and my chin and I have shared this tell with folks that I spend lots of time with in and out of sacred circle, so I have figured out one way to let other people help me. In some ways I am taking care of myself better and in some ways I am doing worse. I’m not playing or practicing music as much as I’d like to be. I’m not stretching or doing yoga as much as I used to. I’m drinking coffee a lot again, there was a time where I had shifted completely over to tea.
Looking back I realize that my time at the hospital wasn’t the most stressful part of this journey, it came in the weeks and months after. When I got home from the hospital I had been given steroids for two days and had one more to go, so that first day home from the hospital I had to take 51 pills. It was the hottest part of the summer and we only had an A/C unit in the bedroom. I was exhausted, unsteady on my feet, and unsure of whether or not I would get better or worse. I couldn’t spend much time outside of the bedroom, I would get too warm pretty quick in the rest of the house, so I felt trapped in a way. I felt angry that my body was turning against itself. I felt weak and that made me feel scared. There was still so much unknown at that point I just had to take it moment by moment. We had just been scraping by financially before I went to the hospital but then we had to drop some vending gigs scheduled in the weeks after. I couldn’t work for weeks, Shannon had to do a bunch of care taking for me as well as pick my load of chores around the house. We haven’t really been able to catch up from that and that remains a consistent source of stress. When I am stressed I am less likely to use the more helpful tools in my toolbox like music and physical activity.
I still haven’t messaged my neurologist about not wanting to take the new medication and to ask what the best way to monitor my condition will be given that I don’t want to take the medication right now. I think I am afraid of the answer and don’t want to hear that they will want me to come in more. Even just thinking about going to the Hopkins appointments makes me agitated and frustrated but I think that has more to do with how broken this overall current medical system is. I realized how quick these emotions can pop up the other day when I was talking to my Mom about some of all this and noticed that I started getting short with her. She was suggesting going to another doctor to be able to talk to someone about how to use medical marijuana as a treatment for some of the MS symptoms because the Hopkins doctors can’t. They will only say that some of their patients have found it beneficial but not how or why it is helpful. The doctor my Mom talked to also mentioned to her that there are ways to medicate the side effects that I might experience with the medication the neurologist wants to put me on. I got irritated when she was telling me about it because that would mean another trip to a different doctor, another waiting room, another lost day. I got upset thinking about having to take a medication to ease the side effects of another medication.
This year hasn’t been all stress and frustration though. I’ve gotten better at playing the ukulele and learned to sing a song while playing for the first time ever in my life. Shannon and I have been singing together more in general too and it has been fun to explore my voice. There has been such a deep joy to play my new drum every single time it comes out. Shannon and I put together a new class that we are really excited to bring to new places and to see how it evolves. We have been loving our new-to-us van even though we did not love our experience with the dealership; the shop they used to replace the front bumper did not do it properly the first time and could have caused a major accident on the highway. Shannon started playing one of my favorite video games with me and now we have gaming dates together. My relationship with my Mom has continued to grow and flourish. When I was 17 I did not have the best relationship with my Mom, I thought I never wanted to speak to her again and I could never have imagined that we would have the kind of relationship that we do today. I have grown closer to the friends I call family and all the love and support from family and friends has been fuel to keep me moving when I feel empty.
I am not quite sure what the next year will hold. There is serious talk about making a move out of Baltimore though we haven’t really settled on where but we have settled on a when. We want October to be the last month in this house. Shannon and I will continue our work with Shining Keys wherever we go. I don’t think either of us want to stop teaching or creating and it is more fun to do it together. No doubt there will be adventures and lessons along the way.