I entered 2023 intending to schedule enough time to finish the first installment in my “Myth of Me” memoir comic book series. Instead of accomplishing that work, I found myself becoming invalid and, ultimately, becoming diagnosed with Non-Specific Interstitial Pneumonia (NSIP).
My journey with lung disease began in the Spring of 2022 as I noticed subtle changes in my heart rate, energy level, and appetite. I also developed a wicked cough that became much worse at the end of the year.
As a self-employed Illustrator and Graphic Designer, I am accustomed to working extremely hard and hustling non-stop. It’s typical for me to end my year exhausted and burned out. This was different.
My doctor visits didn’t reveal any obvious culprits. Some bloodwork indicated that I had low iron. I was prescribed iron supplements and spent the next two months trying to function in an incredibly compromised state.
By the end of 2022, it was obvious that I was getting much worse.
In January of 2023, I began a series of lab work that went on for weeks. I had dozens of vials of blood taken as well as numerous chest X-rays and C/T scans. The x-rays and scans revealed my lungs were enlarged as well as my lymph nodes. My physician had various specialists involved and they all came to the same conclusion-they had no idea what was going on.
By February I was clearly fading fast. My body wasn’t accepting food and even the most basic human activities required prep work and recovery. Showering demanded I store up my energy, sit in the shower and do my best to avoid fainting.
I’ve always been a very independent person. Realizing I could barely rise from the toilet without help was a profound and shocking blow.
As I saw my doctors multiple times per week they witnessed my unspooling in real time and became increasingly concerned. On numerous occasions, they debated hospitalizing me simply to stabilize me and keep me alive. Without a diagnosis, I wasn’t given any sort of treatment since whatever they prescribed could potentially make my condition worse.
I’ve jokingly told people that I may not have been at death’s door, but I was certainly walking down the hallway.
The sensation of losing yourself bit by bit every day is equal parts terrifying and liberating. Rather than feeling raw terror, as you might assume, I felt an unexpected sense of calm.
This isn’t to suggest I wasn’t scared or unnerved but somewhere within myself, those feelings were combatted by a sense of peace and determination. During this period, I was adrift from time and any shared reality with the world.
My daily existence was stripped down to its most primal essence. I was focused on my wife, and my kids, doing what I could to survive and accepting my lack of control over the matter.
Most of this time I was alone, bedridden, and isolated, with my life existing almost exclusively in my mind. I lacked the energy to read, or verbally communicate easily. This time was mainly spent taking inventory of my life and utilizing tools I’d developed in therapy to remain positive and grateful.
I prepared final goodbyes with family and friends, considered my obituary, and did what I could to make dealing with my unfinished business as easy as possible for my wife and kids.
At this time, I was placed on full-time oxygen which stopped my fading and provided a small amount of stabilization. My Pulmonologist ordered a surgical biopsy to finally determine what was occurring in my lungs. I was also ordered to have an endoscopy to diagnose my worsening cough and a colonoscopy to rule out cancer.
On Tuesday, February 28 I entered Washington Regional Medical Center to have my endoscopy and colonoscopy. Due to my dependence on oxygen, these procedures had to be done in a hospital with anesthesia. Despite waking up with ten minutes left in my colonoscopy (Yes! You read that correctly!) the procedures went well.
I entered WRMC on Thursday, March 2, and had a surgical biopsy of my lungs that was done with the DaVinci surgical robot. Thanks to this technology my surgery was less invasive than I’d feared. The recovery was still extremely painful and due to issues with my drain port required my staying in the hospital for 4 days.
The following weeks involved a painful recovery from surgery with a comical low point of my waking up to my drain port wound leaking like the world’s most disturbing garden statue.
Once my diagnosis was found I was immediately placed on an extremely high dose of steroids.
Within a week I felt the effects of the steroids. Although still severely limited I no longer felt like I was fading, but that I was coming back to life.
The lung disease I’m fighting is relatively mysterious and there aren’t obvious answers for me. I have no idea what caused the disease, or what my long-term prognosis is. Living with ambiguity is part of my life now.
I’m learning every week what I can and can’t do. Although I see progress, it’s small, incremental changes and my desire to get back to normal must be controlled. My limited state is what’s normal, for now at the very least.
Thanks to my wife I have very good health insurance. However, even with this insurance, we face a mountain of bills and economic uncertainty.
If my treatment doesn’t go well, I may have to go to specialized clinics that deal with this specific disease. Although I expect a year or more of recovery to see what my “new normal” is I have no idea when I’ll be able to work again or how we’re going to deal with the financial challenges ahead of us.
What I do know is that with my phenomenal wife by my side and the support of my wonderful family and community, I’ll find a way.
Being able to receive the incredible amount of love I’ve been given during this experience has changed me forever. Outside of survival my focus going forward is sharing that love as much as I can because no one survives alone.