By Teresa Baker
I heard my daughter’s panicked voice cry out “NO” as I lay on the gurney in the emergency room trying to make sense of what the movement disorder specialist was telling us on the telemedicine screen. He had my records from my doctor and was fully agreeing with my neurologist; but I couldn’t understand what he meant by “failure to thrive” and “MSA of the Shy-Drager type.” What was he saying? I slept all weekend and was dehydrated; what’s so upsetting? I also had something called encephalopathy; no clue as to what that meant. Why was my daughter crying and why was she saying I needed a nursing home? We had an agreement.
There was a lot of activity, needles poking and prodding me, attempting to start IVs to give me fluids, my daughter sobbing, repeating over and over “I can’t do this, I can’t take it.” My granddaughter saying, “It’s going to be okay Mom, don’t cry”. I tried to comfort my daughter telling her I’m just dehydrated. Complete chaos because I didn’t understand.
A few days later, after speaking to my physician sister and nurse sister I reluctantly understood failure to thrive and encephalopathy. Now I was seeing my neurologist and learning about MSA. I thought at one point I had stopped breathing; they must be mistaken; surely this is not right.
When I went into the nurse practitioner’s office, I asked if this is true. How am I going to tell my children? She matter-of-factly said “I have 3 cups in my hands each filled with a different kind of deadly poison. No matter which one you drink, the final result will be the same.” I said I can’t tell my children that. She stated that facts are facts.
That was the beginning of my journey into Multiple System Atrophy. It was September 27, 2021.
Since then, it seems like every system in my body has had a problem, including my eyes. I no longer know what’s happening or why. I have pacemaker for a fairly rare heart arrhythmia, heart failure, kidney failure, gastroparesis and other digestive problems, and the list goes on. I’m already using an electric power chair at least part of the time. I’m on oxygen at night with a BiPAP machine, restrictive lung disease, and one terrifying episode of “flash pulmonary edema with dyspnea,” which is often fatal.
Listing everything would take a lot of room, but hopefully the point is made. Living alone has been sometimes very anxiety-provoking, and other times I can only grieve about all I have lost. At the same time my sense of humor borders on out-of-control, mostly because I would rather laugh than be frightened or anxious. It is with humor, then, that I wrote the following poem, which is factual but meant to be fun as well.
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THE BRAIN ISN’T COOPERATING
Cooperating less, my brain leaves me in a mess; my legs don’t like to do the job when they try to walk; my hands do clumsy, awkward things when I try to cook; my mind knows what it wants to say but my mouth just will not talk.
My bladder gets much flatter before I make my run and falling down upon the floor just isn’t any fun. A shower is exhausting and leaves me tired out and by the time I’ve gotten dressed, I must take some time to rest.
My stomach takes its time to move my dinner through, and by the time it’s over I’m nauseated too.
