In 2021, Cathy sent us her story about her harrowing experiences leading up to, and following, a multiple system atrophy (MSA) diagnosis. We checked in with her before publishing it, and in the time between, she had forgotten exactly what she’d shared with us — a byproduct of worsening MSA symptoms.
Cathy’s persistence and sense of humor, which you’ll get a good taste of here, remain very much intact, however. These are her words, edited for length and clarity. These are her comic panels, too.
Some may feel uncomfortable reading Cathy’s honest, graphic, humor-tinged words. We feel it reflects the sometimes stark reality of living with a chronic illness, however. Things can get messy.
Tragic Circumstances
After a really bad car crash in 1988 left me with a torn-off foot, fractured spine, facial fractures and a perforated colon, followed by more surgeries and infections, I worked very hard to regain my life, even going back to college and teaching.
It seemed every time I would begin again, another bad physical thing would pop up and I would be back at square one, recovering from a procedure that could have been enough just by itself.
I began to drop things and fall. I was always sweating and had to wear a diaper. When my family practice doctor decided that it was time for me to travel to the “big city” to see a neurologist specializing in movement disorders, I cried. Finally, someone who sees patients with complicated issues. Someone who can see a zebra, not just a horse when they hear hoofbeats.
I was diagnosed with multiple system atrophy, a type of atypical Parkinson’s. A horrible disease that relentlessly deletes important things from your brain until you forget how to talk, or walk, or breathe or remind your heart to keep beating.
[The neurologist] gave me a short time to live, maybe a year.
A Shift in Thinking
Every hospital stay was a horror. I just could not deal. I did not want to do any of the things they wanted me to. Why? Why do anything for less than a year? I was so angry and sad.
After being happily married over 45 years at that point I could not focus on anything but my incredible bad luck. I can see having a couple major medical things in a lifetime, but I was going for some new record.
I had to change my thinking or I really was going to die, and faster than anyone could have figured.
I have always been an artist, so I started drawing mandalas as part of my healing process. Sometimes up to five intricate paintings a day. I just kept drawing and it was helping me feel better.
The next hospital stay, I came armed with my art supplies and a stack of finished paintings that my daughters hung up in my hospital room. Anyone who commented on them got one. Through a terrible time, I stopped being the sick woman and became the artist. I changed my thinking and it started changing how I saw myself. [I] let go of mad and sad and focused on simply being myself.
I have outlived my diagnosis and now I am in a limbo of symptoms and disorders and no actual diagnosis. I have lots of things wrong with me, a page of conditions and symptoms with issues in every area of my body.
My medication box is full and organized so I know what to take before bed, medical equipment for my ileostomy, suprapubic catheter, bi-pap breathing machine, adjustable bed with the plastic sheet “just in case” are all in order. During the day, I use a walker and a hot pink electric wheelchair. I sleep very little.
[But] I am alive. Doctors don’t know everything. Sometimes you have to trust your gut and reframe how you see yourself in the world.
I have a tattoo on my forearm, right where they try (in vein) to place an IV. It says “Nevertheless, She Persisted.”
Finding My Center & Staying Present
My family is my greatest source of courage. [They] help me find my center and remind me about what is important.
Both our daughters and their children live within 10 minutes of our home. My husband retired and is my main caregiver. It has been very important to make sure his life is filled with all kinds of wonderful things and not just taking care of me. He is amazing and calm when I am freaking out and refusing another emergency room visit. We have reached the “‘Til death do you part” vow we never believed we would reach.
What wisdom can I give to you? If you are newly diagnosed with your horrible thing, your mind is still working hard to find a solution and will not hear this. So copy it and hold on to it.
- Take very small steps. You don’t have to lay out a big plan about what you will do in the future, just do what you have to do this moment.
- Create a circle of trust. Family and friends who would actually listen to you at 3 a.m. or deliver an emergency green tea latte.
- Find your humor. When a terrible moment occurs, like bursting my catheter bag or fainting as you enter a store. Both have happened to me. I actually fainted in that same store three different times.
- And because actually trying to stay present the first time you try will not work, practice every day. When practicing, we build a direct pathway to that as the solution.
Laughing, Not Crying
I will end with a story from the past. My husband and I were on a road trip, several years before I had my ileostomy. Anytime I ate, I would need to get to a bathroom quickly.
Stuck in traffic, I began to sweat. The next stop, a casino, was close, but not close enough. As my husband roared to the parking lot, I jumped out and tried to make it into the bathroom that was straight ahead, just feet from the door. I did not make it.
Poo was running down my legs, into my shoes and leaving poo-tracks into one of the stalls. I really tried to sit, but somehow mid-sit I unleashed my inner Jackson Pollock all over the walls. Yes, they were covered with poo. Women in the bathroom finished up quickly to escape the horror that was behind door number three.
I just sat there. I mean, what do you do? I made attempts to clean myself up, and the walls. By this time, everyone had fled and any new arrivals changed their minds quickly about coming in.
Then I hear them. A whole hazmat team in protective gear, talking about the “situation.” I just sat mortified in the stall. What to do? I had two choices: I could stay a quivering mess in the stall or be my normal self.
So I stood up, wiped as much as possible off myself and opened the stall door, to the surprise to the hazmat workers. I slowly walked to the sink with my head held high and washed my hands. I double-checked my hair in the mirror and walked at a normal pace to the front door.
As if it could not be worse, I could not see our car. You would have thought that what had already transpired was the worst, oh no. Waiting for our car to appear, I had to stand with my slacks covered with unmistakable poo by the valet stand, with people coming and going out of the casino. I held myself tall and relaxed until our car appeared. I just got in and we drove off.
Whenever events like that happen, I store [them] away, knowing there will be a time when I start to think that some new thing is the worst… Then I remember the casino.
A whole hazmat team, really.
Since Cathy reached out to us the first time, she started home healthcare with several visiting practitioners and thinks the exercise is doing her well. She persisted through the COVID-19 pandemic and appreciates being able to reconnect with family and friends again.
Cathy continues to create mandalas with watercolor and pen and is also painting “ritual boxes.” She has finished drafting a “little book called ‘Real Sick Cartoons.’”
“I have found humor helps,” she says. We think her humor will help everyone who reads her story.
Cathy P.
Olympia W.
Diagnosed with multiple system atrophy (MSA).
If you’ve found a creative outlet that helps you cope with serious health challenges, consider sharing your experience.
