“Isn’t Her Voice Beautiful?” – CRPS AWARENESS
Copyright 2018 by Lori-Ann Willey
Ever have an experience that warms the heart so much that even after a few weeks, the thought brings a smile to your face? Me, too. I want to share a personal experience with you …one that is a bit sappy in the emotions, but one I feel is worthy of telling.
We’ve all seen the hats that read, CRS across the front of them. CRS stands for, “Can’t Remember Shit”, right? However, if you add another letter to that and make it read, CRPS, how many of you know what that means? I assure you, it does not mean, “Can’t Remember Poopy Shit”. I’m almost betting that those who suffer from CRPS would probably rather have the CRS label instead.
CRPS stands for Complex Regional Pain Syndrome. Otherwise known as, Reflex Sympathetic Dystrophy Syndrome (RSD). Haven’t heard of either of those? How about, if I tell you that it is also known as, Suicide Disease? Why?
“…because so many go without proper diagnosis or their pain is not taken seriously by the medical community that they end up taking their own lives.” – Stephanie, a sufferer of CRPS
Before you continue, please take a moment to study the chart on the right. It helps put CRPS / RSD into great perspective.
A couple of years ago, I became Facebook (and then, real life) friends with a woman named Stephanie after I asked if she was interested in becoming an Administrator of a Facebook group I created where Mainer’s help other Mainer’s with road conditions in hopes for safer travels throughout the great State of Maine. Later, I learned that Stephanie, unfortunately, has CRPS.
Though at the time, I had never met Stephanie in person, she knew who Paul and I were via Facebook. She knew our daughter who ensured her Dunkin’ Donuts coffee was to perfection, and she knew our oldest granddaughter, as she is the same age and in the same class as her son. As I grew to know much about Stephanie as a person, it was very evident that she has great compassion, morals, and empathy. Those qualities weren’t all that impressed me about the woman. Her attitude and the great outlook on life are one to be admired, especially given the fact that she suffers from CRPS.
Back in the 1990’s, Paul and I had a website that we called, “Without Wheels”, because, thanks to the Internet, anyone can “travel” around the world, so to speak, even if bound to a bed or a wheelchair. Without Wheels was a place for those with illnesses, diseases, and varying disabilities to share their stories with others …a support group if you will. On the Internet, who’s to know if someone is disabled unless they make it known? There are a lot of disabilities that are not seen by the eyes of others. On the site, Paul shared his story about his Multiple Sclerosis experiences, and I shared the story about the death of our infant daughter due to Trisomy 18. Through the site, we “met” many wonderful, wonderful people who also shared their stories, and we are still friends with them to this very day. Unfortunately, some have since passed away. So, when Stephanie introduced CRPS into my vocabulary, I grew curious.
About a year ago this past September, Stephanie had lost her ability to speak. We all know how frustrating laryngitis can be, but imagine talking along and suddenly, mid-sentence, even, your voice is gone …and for months at a time. It wasn’t until last November, while Paul and I were at Walmart, did Stephanie recognize us as we came through the doors. Without a voice, she, being a pro at the no-voice thing by then, as it is a common occurrence for her, no matter what the doctors say, Stephanie got our attention and introduced herself …in a whisper, of course. I will admit, my hearing in a room filled with people is not so great, so I struggled to understand some of her words. Several months later -March of the following year- for the second time we “bumped into each other”, her voice was still evasive. Have you counted the month-span yet? Yep, September – March …six months, and still no voice. Can you imagine that?
Jumping ahead a year since we first met - last month (mid-October) I happened to meet up with Stephanie at the school parking lot. With big grins, I jumped out of the truck on a cold, windy day and gave big hugs. To my surprise, I heard her voice for the first time ever -clear, soft, and beautiful! Hoping not to make my shock obvious, we stood talking for a couple of minutes before I brought attention to her working voice box.
How can I relate my surprise and joy? Have you ever seen a video of a person who could not hear, but then after surgery, hearing their first sounds in life? Or a blind person, after surgery, seeing colors, shapes, light, and faces for the first time? If so, do you remember that wave of elation that fluttered through your heart that triggered teary emotions? That is the best way to describe my amazement when I heard Stephanie speak to me in full, audible voice. A couple of days later, Paul went with me to pick up our granddaughters at school. Again, Stephanie was there. I backed into a parking spot beside her. Paul lowered his window so we could speak through opened spaces. As we talked, I didn't think Paul remembered the last time he saw her, Stephanie didn't have a voice, so I brought attention to it, "Isn't her voice beautiful?" Instantly, he remembered and agreed with me.
November is CRPS Awareness Month. In honor of our friend, I did some research and educated myself on this Syndrome so I could better understand what Stephanie was going through. That was a year ago. Together, we discussed our frustrations with medical professionals. As with Paul and his many ailments, finding a doctor that understands is as much a battle as having the disabilities in the first place. If one is diagnosed properly, it comes only after months and years of testing, head-scratching, trial medications, and frustration. Doctor after doctor with little or no diagnosis …treat the symptoms of an unknown, little known, or a less popular belief is usually the result.
CRPS, like with MS (Multiple Sclerosis), Fibromyalgia, and so many other neurological diseases, syndromes, etc. not all patients have the same symptoms, nor can they be described so they are understood, or relatable even to/by professionals. The pain travels, it varies, it may “go away” here, but now it is “there”. To the sufferers, the pain is here, there, or everywhere, if that makes sense. They live with it …they have to. There is no “going away”, per se. If the patient is lucky, they can learn to block most of the pain when it is mild, but what is “mild” to them, could be like a massive bone fracture for the rest of us. That is their mild …the only way it “goes away”.
Odd symptoms that one sufferer may have, others do not, so there is no “constant”. As a result, obtaining a true diagnosis is frustrating and to some, impossible, not to mention the fatigue of it all. To such people stricken with uncommon illnesses, diseases, syndromes, etc., to become overtired, injured, catch a cold, or simply become stressed, can, and often does, trigger more symptoms, other ailments. Avoiding fatigue, stress, and injury are biggies.
Life is a balance for us all, but more so for those with medical issues that often leave even the experts scratching their heads. “Let’s try this …” is a common phrase by professionals. “I would like to send you to ….” is another phrase. All offer hope, while at the same time, offer dread of starting the whole diagnoses process over again …months and years go by with the hope that one day, someone will figure it out. How many doctors? Often, too many to count. Meanwhile, for those who suffer from such ailments often struggle to find ways to live a normal life. As mentioned above, CRPS is also known as “Suicide Disease”. With as little as I’ve touched upon so far, you can begin to understand why.
Remember, because someone doesn’t look disabled, doesn’t mean they aren’t. Just because a disabled person puts on a smile and tries to make the most of every day, does not mean they aren’t struggling inside. With that said, some people are just naturally upbeat in the first place, even if these words are entered into your medical records: “Mr. Willey is too happy considering the grave nature of his medical condition.” That quote will be explained another day.
Why did I write all this? It has been over 2 ½ weeks since I first heard Stephanie’s true voice for the first time. Knowing she can lose that ability to speak at any minute on any day and for months on end, possibly for years, or forever makes me all sappy in the emotions department.
So many of us don’t take the time to realize how lucky we are. We have a headache? Take an over the counter pill. Achy feet? Change shoes. Simple solutions to temporary aches and pains are nothing in comparison …yet, I guess, all is relative.
I think I will always hear Stephanie’s voice inside this head of mine. It brings a smile to my face …and I admit, it’s made me teary-eyed a few times, too. Appreciate what abilities you have while you have them because you just never know what the next moment will bring. Just as Stephanie won’t know if she will have a voice, or the ability to walk from one day to the next, as both abilities have left her before.
When I told Stephanie how much it meant to me hearing her voice for the first time, how it is stuck in my head as a happy-sappy thought, I asked if I could use her name in this piece. She gave permission and offered more information to help me understand CRPS. Thankfully, her memory is better than mine, because she helped me piece the time frame together, too.