Ron Fredman had only been diagnosed with myasthenia gravis for a few weeks when he reached out to us. It was June 2023, at the tail-end of a busy and successful MG Awareness Month.
“I was diagnosed with MG about a month ago and have traveled a bumpy road ever since,” he wrote. “Rather than sit in silent suffering I decided to chronicle my journey, using humor as a shield and a platform. I enclose my work so far.”
Attached were 31 social media posts, dated May 20 to June 30, 2023, that Ron had shared with friends on Facebook. Each one painted a vibrant picture of life in turmoil – of uncomfortable, inconvenient, and downright debilitating symptoms; of tests and procedures; of hospitalization; and of navigating daily life – the “new normal” – with MG.
Ron’s writing was honest but also irreverent. He poked fun at hospital food and doctor’s tests. He poked fun at himself. It was very open, real, funny and, we felt, relatable.
But, we wondered, is it okay to joke about myasthenia gravis?! Do you get to joke about something that can kill you?
“Health issues easily can consume the best of us. I’m no different,” Ron shared when I asked him this question. “Through my writings, I try to remind us all we are more than our diagnosis.”
Ron acknowledges difficult days. But he feels strongly that his optimism and his drive to enjoy the simple things in life keep him going, and that’s a message he’s keen to share.
“I want to show that, despite my hurdles, I find a way for good things to happen. Hope is helpful. So is a chuckle and a confirmation we are not alone.”
We agreed. So we published his essays as a new ebook, I Was Fine a Minute Ago: My First Year with Myasthenia Gravis. These tales, filled with humor and honesty, chronicle his experiences as a new member of the “Snowflake Club.”
We hope that you find something you can relate to in Ron’s journey and that his writing brings you a chuckle.
As Ron says, “Humor is a great doctor; smiles a wonderful medicine; normalcy, a daily goal.”
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I WAS FINE A MINUTE AGO: MY FIRST YEAR WITH MYASTHENIA GRAVIS
By Ron Fredman
Read an excerpt of the book below, and then be sure to download and read the whole thing here!
May 20, 2023
Hi all.
Well, ain’t this a kick in the pants?!? Seems likely I’ve developed myasthenia gravis. Good old MG is an autoimmune disease where muscles and nerves ignore each other. Oh, they both work fine. Just not together.
It’s like having a great pitcher and a darn good catcher, but the baseball’s broken. All they can do is wave. You’re certainly not going to strike out too many batters that way.
Speaking of baseball, you could just about fit all of us Americans who have MG inside the KC Royals’ stadium (at least they’d have a sellout for a change). There might be another 10,000 or so out in the parking lot, probably tailgating before the Chiefs game kicks off next door at Arrowhead.
I’ve always wanted to be part of an exclusive club. Somehow, though, this isn’t what I had in mind.
The silly thing manifests itself with symptoms like trouble chewing and swallowing, droopy eyelids and face muscles, overall weakness, and blurred vision. Breathing can be a problem in serious cases, but so far so good in that department. I also can’t puff out my cheeks or curl my tongue up over my front teeth much anymore. I used to get such joy out of doing both (I entertain easily).
One thing that really bugs me: It’s difficult at times to speak coherently. I start off okay but swiftly degenerate into a nasally Elmer Fudd After a Big Night at the Tavern. Oh yeah. And sometimes a drink of water runs up my nose. From the inside. Dandy. Just @#$!*^% dandy.
I guess this has been coming on for a while now – I even wrote a piece a few months back lamenting my lost ability to whistle, though that could be because of some other muscle issues I’m dealing with. But in the last couple of weeks, things have gotten a bit nutso.
It doesn’t surface all the time, just when I’m tired or have been talking a lot (which is pretty often). When I rest, it calms down. So weird.
Luckily, it’s treatable. There are good medicines out there that can check the symptoms and return me to my fairly normal abnormality. I’m looking forward to starting those pills, though first I have some more tests to do. That includes a return to the House of Horrors and their Electro-Shock-O-Matic 2000 Muscle Twitcher (aka electromyography and single fiber EMG). Whoo hoo. Can’t wait.
I have a couple of great docs looking out for me: an internationally recognized expert who runs the neurology department at the University of Kansas Medical Center, and a dear friend who’s the resident MG guru at St. Luke’s. They’ve assured me this, too, shall pass (or at least be managed).
Regardless, I’m going to keep on keeping on, doing what I can when I can. Like always.
If nothing else, I have new adventures to write about. That’s something, I reckon.
Stay well all… and so will I.
PS. Tricia, my wife, has been grand since this flared up (not that she wasn’t before). I’m so blessed to have her at my side. And making chicken soup. Wonderful, super-tasty chicken soup. With homemade noodles, no less. Just another of Tricia’s delicious dishes sure to cure what ails ya.
May 27, 2023
One of the screwiest things about this myasthenia gravis is the way it messes with my speaking. After a meal or at the tired end of the day, I start blubbering like a fool with his tongue in a vice. Sometimes it happens in the middle of an otherwise normal sentence. I guess at that point, my muscles have just had enough.
Of course, I’m making the best of it, and Tricia and I are enjoying a good laugh. I have learned how interesting it is to spit out certain words (with lots of spit), especially those one would consider not suitable for a family newspaper – if there were such a thing anymore.
Here’s an example: Shthiiitpftt. All the letters you need are there. Just get rid of the extra ones.
Tricia enjoys repeating it back to me. Somehow, when she tells me I’m full of shthiiitpftt, it doesn’t seem quite so bad.
True, it’s a made-up word. I double-dog dare you to find a word that WASN’T made up at some point. So there.
But get this: I found a solution to my vexing glitch. That’s right. Before the doc has given me my first pill, before all my testing’s even done, I’ve fixed the speech problem.
All I have to do is rest my chin on my hands and push up along the side of my face.
Ou la! The slurring goes away and I sound nearly normal.
Of course, doing so makes me look like a dork. I know. I checked.
Tricia thinks it would help if I wore a big yellow bow in my hair when I cop that pose. One with lots of black polka dots. And bob my head from side to side.
What a sweetheart.
I tell you what: If she makes me do that, she won’t have a BIT of trouble understanding everything I say to her. Hide the children.
Stay well all… and shthiiitpftt to illnesses of all kinds.
July 27, 2023
I paid a visit to my myasthenia gravis doctor earlier this week. Time for a check-up.
He went through the usual round of pushings and proddings, pokings, and poundings. Neurologists just love that kind of stuff. He squeezed my face and knocked my knees. He stuck a finger in my eye and twisted my toes. He pulled my hair, whacked me with his hammer, and had me count backward in Greek.
And that was just the warm-up.
It was all, I’m sure, for my own good. Just like the three gallons of blood the lab folk drained later in the day.
Then he was ready to get down to business. “How you feeling?” he asked.
“Great,” I replied.
That was the perfect answer from where I sat. I try to face my challenges with a smile and a denial. But to be honest, it might not be the best strategy. Especially since my loving wife has a medical background and a no-nonsense approach. It’s gotten me into trouble more than once. This was one of those times.
I cast a sideways glance at my personal Minister of Truth.
“Well…” she began.
Ten minutes later, reality lay bare on the floor. My objections were rejected, my supplications tossed aside.
Turns out, things have been a bit rougher lately than I’d like to admit. I’m tiring easily. My face seems a little heavier every day. A slight slur slips into my speaking; a fog covers my brain. Breathing is not always a breeze. Other stuff is popping up.
I guess this is pretty normal for the MG community. It’s still new to me.
Rising to my defense, I mentioned I’m not due for my next miracle-drug infusion for 10 days or so. The good stuff is wearing thin. That could be all it is.
And there’s this heat, I argued. It’s taking its toll, even when I just crack open the door to chase away the magpies (we don’t actually have magpies, but it’s a fun word to say). Heckfire, it was 106 degrees outside yesterday. For you readers in Centigrade-centered lands, 106 Fahrenheit is hot. Darn hot. Melt-the-sidewalks hot. And MG and hot don’t get along.
On a roll, I also tried to blame our two dogs – the poor, loving, innocent dogs. One of them wakes up in the middle of the night, which wakes me up, which wakes up Tricia. Except Tricia says I’m the first domino in that line. Since she’s the last to wake up, I don’t quite know how she can so easily point her finger my way. But why lose yet another argument?
“Here’s an easy fix,” the doc said, scribbling in his notebook and nodding sagely. “Send either you or furry little girls to the doghouse at night so everyone can get a good sleep.” Tricia suggested there’s enough room for them AND me. I think she kind of liked the idea.
“But here’s your real problem,” he continued. “You have a Type-A brain that’s slipped into a Type-B body.”
I suggested that recently it’s been more like a Type C or D. Maybe even a D-minus.
He kept talking: “You can’t be cutting the grass in the morning and going to two meetings in the afternoon.”
(Guilty.)
“You can’t be running around like you’re a kid.”
(Who, me?)
“You were outside at Scout Camp… for 10 days?!? Who does that?!?”
(Hey, you said I could go!)
“Slow down! Pace yourself.”
It’s good advice, I’m sure. After all, the turtle did beat the hare. But how do you suddenly shift from a 100-mph existence to a crawl? That’s a good way to drop a transmission or something.
Look, I tried after my heart attack in February last year. I even retired. Wasn’t long before I was volunteering for all sorts of things and busier than ever. Same with this latest ailment. If my calendar’s not full, I feel empty.
I guess I just have to tell my brain my body’s not young anymore. I’m not the speed demon I once was. Pieces are rusting; the engine is clogged.
If only I could realize rest is the key to health, I could see that taking it easy would make life that much easier. Frankly, that’s probably going to be the toughest part of this whole thing. That, and being honest with myself.
I do have to admit, though, it is kind of nice to have a free pass to nap whenever the mood strikes.
What I wouldn’t have given for that luxury when I was working and running as fast as I could.
Stay well all… and catch your breath now and again. You’ll thank yourself for it later.
Aug. 23, 2023
It’s been 30 minutes already, and I’m still sitting here winded. Tough workout? Mini-Marathon? Three-round bout with the neighborhood heavyweight champ?
Nope.
I wheeled a plastic bin half-filled with grass clippings from the side of the house to the front. Half-filled. Not even enough to make a decent pile of compost. But boy oh boy, did it pile on me.
In my defense, I hadn’t had my morning meds yet. I was running on last night’s fumes, and that’s never a good thing. It’s like when your laptop dings and pops up a warning that you better plug it back in. You’ve got a few minutes, then all goes black.
Thanks for nothing, myasthenia gravis.
Now, mind you, I did have to travel up a slight hill. Thirty feet, maybe, until I hit the relative comfort of the driveway. It was filled with patches of crabby crabgrass nipping at my heels as I trundled by. And had a heavy dew soaking the path, the inevitable result of living in a sauna-infused heat dome the last few days.
This was no walk in the park, that’s for sure. Well, maybe one of those national parks. With the mountains and goats and things. But not your nice little flowery park.
My feet grew heavy, my heart began to race. “I can do it,” I told myself, not fully believing. “It’s no big deal. Easy-peasy.”
There was nothing easy or peasy about it.
Step by aching step…
Hungry buzzards circled overhead. Coyotes howled their dinner call. The breeze blew hot, the flying sand stung my parched lips.
Onward I stumbled. Past the wilting bushes. Under the scorching sun. A bleached skull mocked me. Scorpions and snakes shook their heads in jest.
“Why have you forsaken me?!?” I cried to the heavens. Silence answered my plea.
I fell to my knees. All was lost.
Then, with my last breath, I shouted: “This is stupid. Get off your @$$ and finish the job, you drama queen!”
That’s all it took. With renewed vigor, I skipped the green bin up the hill, onto the drive and to the curb. Now, it’s the city’s problem. Let its big truck come by and dump the grass into its bowels. Someday, those clippings will make a nice pile of dirt. But as far as I’m concerned, today, this day, they’re yesterday’s news.
Stay well all… and may all your peasies always be easies.