A Glimpse into the Life of a Dystrophic PhD

A Glimpse into the Life of a Dystrophic PhD

If you know about the basics of Muscular Dystrophy (MD), you can assume that any task involving physical strength may become more and more difficult over time. In my experience some activities have remained relatively easy as things have progressed (like using a mouse or trackpad) while other activities have become unfathomably difficult (social events away from home). I want to share the current status of several phases of my life. Before getting into the details, I will point out that there are 30+ types of neuromuscular diseases (https://www.mda.org/disease/list ) meaning that symptoms, progression, and severity are highly variable so what works for me may not work for others. Counter to the old adage one size does NOT fit all.

I feel the urge to mention Maslow’s hierarchy (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3161123/ ) because people living with MD have many of the same human needs as anyone else. First, we must have the fundamentals like food and water to even think about anything else! Then comes higher levels of need like socialization, having a partner or children, and the expert level of metacognition and self realization. At different stages of life we can have deficiencies in one or more levels of the hierarchy pyramid and everything is fluid so changes happen all the time. Okay, now that we have dispensed with the pleasantries let’s take a magnifying glass out to explore a bit of my approach to the day to day!

First group of tasks: the bare necessities needed for sustaining life including breathing, drinking, and eating. During my gallbladder surgery in 2021, I had a tracheostomy and was placed on a portable ventilator to assist my breathing. While I am on a ventilator right now, I am still able to do almost everything as before. I just sound like I’m wearing a scuba mask and my ventilator occasionally reminds me it exists when it incessantly beeps for no reason. As an aside, I am able to breathe on my own in small increments and it’s possible that I can strengthen my lungs enough to breathe on my own again. Drinking fluids and “munching on serious grindage” is simple as long as I have a straw and caregiver nearby to assist. Thankfully, I have amazing friends and family who are more than happy to help! This set of tasks is very consistent with my abilities before my surgery aside from my breathing support.

The next subset of activities I want to address center around physical ability to complete routine tasks like showering and positioning. I used to have the ability to slide onto a shower chair, but safety and time (2 hours per shower 😳) forced me to adapt by seeking out other options. Since the gallbladder removal, this is even more difficult because it primarily involves the age old process of the “sponge bath”. I do have to brag on myself and caregivers for finding methods to remain clean with an emphasis on pits, privates, and orifices as mentioned in the new deodorant commercials floating around if you’ve had the pleasure of watching them. Pressure sores and skin breakdown is something I continue to be hyper vigilant with.

My last few “life goal” areas revolve around two of the most challenging and honestly frustrating aspects of living with a progressive, severe disease: dating and employment. I readily admit that much of the “prime dating” phase of my life may have passed me by during my college days because I chose to focus almost primarily on academics and eventually my research career. I honestly used this as a figurative crutch to avoid dating even though it is such an internal drive for me to find someone who wants a relationship and family with me as much as I want with them. Many attempts to date over the years with the end result of “the friend (twilight) zone” caused me to bury that part of me for far too long. 

Life flipped me upside down since COVID to the point where I was completely unbalanced which is bad news bears for a Libra! Isolation and fear of infection drove me deeper into a feeling of constant anxiety and more obsessive behavior towards my job. My life reached a point where my body said “I’m shutting you down”. While my gallbladder may have become septic because of diet anyway, I feel to this day that stress was the catalyst. Long story short I had to stop working and begin a multi-year recovery process. Thankfully my supervisors and eventually disability benefits kicked in where I could feel financially stable. This coincided with a corresponding recovery health wise where I regained many daily activities of living. Don’t get me wrong, my care and wellness is still comparable to a full time job. Thankfully, I have for a renewed focus and a semi-stable health state again, so I do finally have some freedom to dig into my mental health and dating life.

Dating apps anyone? I learned extremely quickly that dating app subscriptions can be addictive and seriously mess with your self confidence. Yes, they can trap a PhD! A light bulb went off (metacognition??) and I thought “How about I put resources into improving myself like accepting all the great and negative parts of my disabilities and becoming a more complete human?”. I completed a dating coach program (shoutout to Dating By Blaine) and graduated from a life coaching course (shoutout to Charlie Kramer) while adopting yoga and meditation practices. I took professional photographs for the first time in years. I asked multiple women out. I started daily affirmations and breathing exercises. I ended a relationship that was going to become toxic. And yes, I revised my dating profiles. This brings me to Dateability! I instantly signed up and loved the transparency offered to share all of me including my disease and disabilities which are part of who I am. I look forward to meeting more people on the app in the near future and the potential to find a life partner. In the meantime, I’m continuing to pursue more new experiences with family and friends in addition to continuing to seek holistic health in the next phase of my journey!