Facebook Post - Health Update
Hi All,
As many of you may know I have been suffering from “health issues” for a few years now and I wanted to take a moment to explain in more detail what's been going on with me. About three years ago I started experiencing severe symptoms of what’s called PEM (post-exertional malaise), intense daily nausea, debilitating headaches, difficulty with basic cognitive processing, insomnia, loss of equilibrium and vertigo like symptoms. After countless tests and doctor’s appointments I was finally diagnosed with ME (myalgic encephalomyelitis or chronic fatigue syndrome). My physical health continues to degrade to the point where I now can no longer work in any capacity, cannot travel in a car for more than 30 or so minutes, and usually have about a 2-3 hour window most days where I can do any sort of light activity.
After managing a tenuous balance between work and recuperation for two years I am no longer able to work due to the severity of my symptoms. As a result, I have spent the last six months focused almost exclusively on my health with unfortunately very little to show for it. However, I have slowly clawed my way back to some semblance of energy consistency with a very small window of activity each day. This has enabled me to do things like write this post! I have accepted that while I continue to do everything in my power to get healthy, the reality of the situation is I am currently suffering from a chronic illness with no clear path to recovery. Therefore, I don’t feel the need to keep this information private anymore.
I encourage folks out there: if you know someone who is sick and there isn’t an immediate diagnosis take them at their word. Do not judge them because of your own fears about health, sickness, life and death. Help them, care for them, ask what you can do to help them. Be their friend and confidant in their hour of need and for fuck’s sake don’t gaslight or judge them! On the other end of the spectrum, if you know anyone that is suffering from a similar illness and are looking for guidance. Please send them my way! I have compiled a pretty hefty list of resources :)
To my Marin Catholic related FB friends I did want to clarify my exit from my position last year. If you’re not interested in this part, no worries, feel free to skip the next few paragraphs! After spending the entire summer break of 2019 doing everything in my power to get healthy for one last school year at MC it was to no avail. I lasted about two weeks before I was sleeping in our makeshift office in between classes just to have enough energy to get through the school day. My time outside of school was devoted solely to rest and recuperation with my wife Sarah taking on the massive burden of all of our household chores and responsibilities. To be honest, if that had been the extent of the symptoms I probably would have tried to continue to push on. However, about a month into last school year in the middle of work day I started experiencing severe chest pain, vertigo and loss of my equilibrium, and an inability to fully control my arms and legs. Upon receiving professional medical advice I left work and checked myself into the emergency room. At that point I realized that I could no longer do the job that I had dedicated myself to for the last eight years. It was a devastating realization, but a very real wake up call that I needed to prioritize my health above all else.
I submitted a leave of absence and after a few months I recovered to the point where I could start working part time again. I was really grateful to have found someone to long term sub my teaching responsibilities and had no intention of disrupting the new workflow in the performing arts department. My only goal was to stay connected to the community I had helped build for almost a decade, assist the students/faculty in any way I could, and see the 2020 senior class successfully to graduation. We are so privileged to get to work with students through all four years of their high school experience, and it means so much to us to help guide these amazing young people all the way to the finish line.
After months and months of trying to coordinate a smaller role with the administration of Marin Catholic I literally got a phone call out of the blue that said I had to work a number of hours per week that I and they knew I could not physically do (due to my chronic illness) or I would have to resign immediately. At that point I realized they did not want me to come back, but for some reason could not openly admit it. So the only conclusion I could draw was that they had HR come up with a workaround in order to force me to resign. After breaking it to the performing arts students that I would not be returning they told me they were going to figure out another way for me to work in a smaller capacity (i.e. subbing classes, helping with the musical, private lessons, etc.). After subbing opportunities came and went, phone calls and emails went unanswered, and no plan materialized for me to have a part time role I realized they did not actually want me to return in any capacity. It was an incredibly disingenuous way to kick someone to the curb who had given their blood, sweat and tears to that program for eight years. Not a word of gratitude or appreciation was spoken and my desk was packed up that weekend. In my conscious mind I have forgiven those involved, but my unconscious brain is still processing these traumas. I am grateful to all of the mental health services I have had access to over these past few years, but it is still most likely going to take a while to heal from these emotional and psychological wounds.
It was the most disappointing and frustrating ending to a job I could have possibly imagined. Some folks involved in that decision/process I have been able to connect with and make amends. Unfortunately other folks have refused to engage with me or acknowledge their actions and all I can do is forgive them from a distance. I hope to be able to look back on that experience someday and remember the positive moments instead of involuntarily reliving the traumatic ones. I did want to say thank you to everyone who in any way helped with the Marin Catholic meal delivery service through the fall of last year. Having access to ready made healthy food was a godsend to Sarah and I as we navigated an incredibly challenging time period. I am also so grateful to have been a part of the Vermont College of Fine Arts music composition program during this challenging time. They were the exact opposite of my job in every way imaginable. They helped me navigate ADA so I could complete my degree while still meeting my project goals to the extent I was physically able. It was the most incredible education experience I have ever had in my life and I am so grateful to everyone in the VCFA community for their compassion, empathy and understanding. Looking forward to those residencies in Vermont every six months was the light that kept me going while subsisting in an incredibly toxic workplace environment back at MC.
As I continue on this ME journey I did want to pause and express my gratitude for all of my family and friends who have helped me stay the course. My wife Sarah has been my caretaker now for almost 3 years while also balancing an incredibly high stress teaching job. My parents have been a continual source of support: from making us weekly meals, to helping with medical bills and everything in between. I am also thankful to all of my friends who continue to check in with me even though I can no longer play music with them or meet up to socialize in the way I used to before getting sick. It means the world to me and I am so grateful for their support. There are many more individuals I would like to thank and will definitely be doing so in my new blog (see below). I hope one day to be able to resume some semblance of a ‘normal’ life, but I have also had to accept the fact that this might not happen. It has taken me a long time to get to this realization and I will probably always feel sad and frustrated about what I have lost while also embracing and appreciating what I still have. I am grateful to myself for having the strong qualities of resilience and perseverance. So I am confident that I will always pursue the next doctor, clinic, diet, lab test, etc. I will never stop looking for treatment options and an answer to this illness.
If you want to learn more about ME, the best thing I have found is the film UNREST: https://www.unrest.film/. Please note this documentary delves deeply into the subject of chronic illness. If you or a loved one have experienced chronic illness this can definitely be triggering to watch. As I continue to find a way to still be an artist I have started a blog to share updates both music and ME related so the title of the blog is properly ‘Music & ME’. That’s right, I can still bring the puns ;) You can check it out here: http://www.paulsmithstewart.com/musicandme
Thank you for taking the time to read this post.
Sincerely,
Paul Smith Stewart