It’s cold in Chicago, the coldest winter in its history since records began in 1872. On the radio the weatherman warns against about going outside at all as 24-year-old Pearl hoists herself from her wheelchair into her SUV. She begins the tedious process of breaking down the chair herself. It takes 15 long minutes. She has to move quickly as her shaky fingers disassemble the chair’s freezing frame. Pearl finally completes the task, and hurls the chair behind her into the back seat of her tired SUV. Pearl’s fingers are numb. The day begins.
Sixteen years before Pearl was a perfectly healthy 8-year-old girl racing her little sister around the backyard on a balmy summer day when she fell down. Her left foot took the worst of it, but over the next several days the swelling quickly graduated up her leg. Tylenol wasn’t helping. The doctors said give it time. Time was exactly what Pearl got. From that day forward it would take 18 years for Pearl to get a correct diagnosis.
The doctors were mystified at first. Some thought Pearls pain was psychosomatic, a cry for attention. Her parents even bought into it. Pearl told me over the phone, “What 8-year-old could hatch such at elaborate ruse and then stick with it for the next 18 years?”
Others thought it was a neurological disorder. But you eventually want to throw a name at something so they did, Reflex Sympathetic Dystrophy Syndrome, now known as CRPS. What Pearl actually had was a disorder called Charcot-Marie-Tooth, CMT. There is no known cure.
Pearl’s strain of CMT is one of the more aggressive. The disease affects both motor and sensory nerves, atrophying muscles in her legs therefore compromising motor skills and coordination. If there were drugs that could delay the muscular atrophy, Pearl wasn’t getting any of them. In fact, she was unknowingly taking drugs that accelerated the process.
Pearl also has bi-polar disorder. She joked, “It’s strange, people think you can’t have mental health and physical health issues. Many people can’t digest the idea, like, ‘you can’t be blind and depressed!’ Sadly, I explain to people that even though I have CMT, I’m also still human.”
One of the many medications she was prescribed for CRPS were mood stabilizers, a common side effect of which can be shaking and nervousness. So when Pearl noticed she could no longer hold a Coke can, everybody thought it was a common side effect. What the doctors didn’t know, because she had been misdiagnosed, was that the cocktail of bi-polar drugs she was taking was causing nerve death, hastening the effects of the neurological disorder.
Pearl told me,
“If we would have known what we were looking at further down the line we could have sustained my muscle ability. But I was passing these points over the years, should I call them points? What’s the opposite of a milestone? Anyway, whatever they were I passed them and it cost me physically and mentally, and personally.”
This is where things go from bad to worse.
Pearl is almost completely deaf in her right ear. Within the next 10 years, she will be completely deaf in both ears. Around the age of 10 Pearl started learning sign language, an insurance policy against her hearing loss. She became quite proficient in sign language, even getting certified in ASL.
By the age of 20, Pearl’s legs had almost completely failed her. Pearl was confined to a wheelchair, although she could stand with the aid of crutches.
“At this point in my life, I had no support, I was more or less estranged from my parents. I was basically an orphan. I moved to Tampa and was working at a Montessori school, I was the “voicer,” specializing in the deaf and hard of hearing children or helping hearing children with deaf parents. I found sign language to be beautiful and comforting. Even better, I loved connecting with the children and helping them, in turn, connect with their parents. Something I had been unable to do.”
Then one day, Pearl was interpreting for a class at a special ski outing. There were a group of ski instructors teaching the kids to use adapted skis, the language they were using was highly technical and nuanced, which was fine with Pearl, “I was always fast with my hands, but suddenly I found myself not being able to keep up with what was being said. I knew in that exact moment the CMT had reached my arms and hands.”
With the inevitable loss of her hearing, her hands would be the only means of communicating with the world. She must not lose this ability.
But the reality of the situation has begun to set in. As time goes by, she will lose hearing function, then slowly her ability to use sign language efficiently, “I’ve started teaching myself to read lips. I’ll always have the ability to talk more or less, but I have to keep trying. What choice do I have? Communication is freedom.”
You’ll read in the photos below that Chive Charities has purchased Pearl a brand new ADA van with an automatic ramp, a walker, and also a new wheelchair attachment. And that was supposed to be that. We were to publish a short recap post about the van and the wheelchair last Thursday and that would be that. Prior to publishing the story I held off, I had missed something. Where is Pearl living now? How does she make money? Can we do more to help her? I couldn’t close the book on this one…
Donate RIGHT HERE!
UPDATE #1: Just refreshed and already blew through the halfway mark at $6,000
UPDATE #2: Just crushed that goal, $12,000 and counting. Cannot wait to see what happens next. We’re all gathered around our computers at theCHIVE HQ watching our Chivers do their thing! Amazing!
UPDATE #3: $15,000!! Let’s double this goal. Pearl is getting back from her doctor’s appointment shortly and I can’t wait to talk to her. I’ll fill y’all in as soon as I do!
UPDATE #4: We doubled the goal, $20,000! We also talked to Pearl who just got home from the doctor:
“Neither of us had any idea that any of this would happen so quickly… I checked on the GoFundMe page at the doctors office and the goal had been hit? It hadn’t even been 2 hours!”
We’re definitely going to bust out some chocolate martinis tonight. Thank you, Chivers!”