Dave and I had been roommates in Salt Lake when I met Cody back in 2000. He was always quiet and funny, waxing poetic about moldy coffee or snow leopards. Cody and I were both surprised when he and my other roommate began running half and full marathons, regularly. Soon a cute girl kept showing up in Dave’s photos and Cody and I jokingly wondered how regular old Dave had landed such a babe. They married, continued to run races and you could always tell how in love Dave and Sheila were in their photos.
Earlier this month Dave changed his profile picture, it was a good one. The two of them sitting in the back of a truck, Sheila looking up at Dave with all the love in the world. I noticed a comment left by a friend that said “I’m so glad she had you to share her life with.” I started reading other comments, then posts from other people, all condolences and love. Then came the obituary.
His wife had passed.
I offered my condolences, and feeling helpless asked if he’d ever be willing to share her story, to share awareness of the misunderstood and rare disease that Sheila was diagnosed with earlier in the year. He was reluctant at first “I’m not a writer.” But when it comes to sharing something you care so deeply about, it doesn’t matter if you’re a writer or not. Dave loved Sheila, Sheila loved Dave.
Dave tells the story better than I ever could have, my only ability is to share it, ask you to share it, and hopefully help even one person with Sheila’s story.
I had never heard of Complex Regional Pain Syndrome (also known as Reflex Sympathetic Dystrophy or Causalgia) before my wife Sheila was diagnosed with it earlier this year. In April of 2013 her big toe went numb for no apparent reason. The numbness, accompanied by weakness, quickly spread up her leg until her entire right leg below the knee was rendered useless. Within about 10 days the pain set in. She was diagnosed with CRPS in May and she passed away on July 29th, 116 days after her toe first went numb.
CRPS is a rare nerve condition that often goes undiagnosed for months or even years. Symptoms include abnormal sweating, changes in skin temperature and color, softening and thinning of bones, muscle twitching and tremors, wobbliness, falling, visionary disturbances and severe pain. Sheila suffered from all of these.
We’ve all experienced pain, it’s part of being human and it serves a very specific purpose most of the time. CRPS inflicts a level of pain that most of us can’t comprehend and will never experience. The McGill Pain Index ranks CRPS as the highest level of pain possible for any chronic condition. CRPS ranks significantly higher than cancer, fractures, unmedicated child birth and even amputation of a digit. The pain from CRPS never goes away and pain medications are almost useless. The pain my wife experienced was so severe it prevented her from wearing shoes, socks or pants. She couldn’t submerge her leg in water and even a light breeze could bring her to tears.
Initially my wife would try to explain to people how bad her pain was. People were sympathetic but they really didn’t understand. There was no affective way for her to accurately explain the amount of pain she was in. Her leg would appear red and swollen at times but usually looked to be relatively healthy. A former roommate of ours even accused Sheila of faking her condition in order to get workers compensation, even though compensation of any kind was nothing that she ever pursued. Sheila eventually stopped trying to get people to understand. She just put a smile on her face and tried to hide her pain from everyone.
It is estimated there are between 1 and 3 million people in the United States suffer from CRPS. 75% of victims are women. The majority of victims develop the disease in their 30′s and 40′s but, it can hit anyone at any age. CRPS is usually preceded by an injury of some kind or surgery. There is no cure for CRPS and treatment results vary greatly from patient to patient. Sheila’s form of CRPS was one that did not come with a favorable prognosis. We tried a number of treatments and nothing seemed to bring her relief.
My wife’s doctors, and there were many of them, didn’t know what to do. Some of them had heard of CRPS but most had no idea how to treat it. We had read of promising results using the drug ketamine. We specifically asked for it but, when we finally found a doctor that agreed to treat her with it, our insurance company refused to help with the expense. Ketamine is used as a recreational drug and it’s very difficult to find doctors that will use it and insurance companies that will pay for it, despite reports of positive results. They instead handed out narcotic pain killers like they were candy, our insurance company had no problem paying for these.
On Monday July 29th I came home from work and found my wife unresponsive on our couch. She had passed away in her sleep from an accidental prescription drug overdose. She was 32 years old.
Sheila and I were very active before she got sick. We completed many half-marathons together, mountain biked, snowboarded and were at each others side on a variety of other adventures. Sheila was a young, vibrant, healthy, beautiful wife and mother of two daughters. She was in the prime of her life. When asked what she would do, if she could do anything, Sheila said…
“I would run! I would run as far as I could, to the middle of nowhere, and then run home. Or, I would ride my mountain bike in Moab, all day, everywhere possible. Or I would swim. I’d swim laps until my muscles were so weak I couldn’t stand.”
November is RSD/CRPS awareness month. Please visit rsds.org to learn more or make a donation to help fund research and raise awareness. Or, contact Dave directly at firstname.lastname@example.org.
Have you heard of RSD/CRPS before? Would you please help Dave spread awareness of this disease with a link, share, a comment or tweet so no one else has to hide their pain or suffer in silence as Sheila did? Thanks guys.
After this past weekend in South Carolina, I wouldn’t be surprised if I eventually become MooshInCharleston.com. It should also be mentioned that if I did move to Charleston I would also become very unhealthy because biscuits at every meal. My dryer seemed to have worked overtime while I was away because my pants are all just a wee bit tighter today than they were last week.
If cruises are where you go to nap, Charleston is where you go to eat. Good heavens, the eating — I returned a changed woman, stuffed to the gill with fresh, hot pralines and enough she-crab soup and biscuits to fuel a small country. Lowcountry cuisine? You have won me.
Everywhere we went seemed to be straight out of a movie, I forgot where I was a few times, sure I had fallen asleep and this was all one crazy, beautiful dream. It’s amazing how scenery so simple can overwhelm every sense. (Especially when there are tree frogs around, mercy, those frogs are loud.)
There were six of us total, representing different publications and websites. On the second day we were all getting out of the car to eat more biscuits and soup when one of the girls got a phone call.
Her husband had passed.
No one knew what to do, or what to say. I mean, how can you? Here she was getting what I can only imagine to be one of the worst phone calls of her life while she was far from home surrounded by strangers. Of course all of us figured she’d be on the next flight home, in fact I’m pretty sure we would have been willing to drive her home ourselves — but she stayed — all weekend she stayed with strangers in a strange and beautiful place. Her husband has been ill for awhile, and while he wasn’t “he could go at any moment ill” he did tell her to go live her life.
And so she did.
Even she said there was no sense in going home to just be sad. She took the weekend as a welcome distraction for things settle down and her new reality to sink in.
Never before had the phrase “Be kind, for everyone you meet is fighting a hard battle” been so true.
You simply never know what someone is going through.
I learned a lot from her and her courage this weekend, I’m very thankful for her example of grace in the face of unfathomable tragedy.
There seems to be an awful lot of terrible things happening lately, none of which will ever be reported on the news, but terrible all the same.
Death, illness and devastating news seems to be touching the lives of everyone right now, if not directly, than through friends or distant contacts online. It’s a painful and unique sadness knowing so much hurt is out there, knowing there isn’t a whole lot we can do beyond offering our condolences, a prayer, a hug, perhaps a casserole. I’d like to offer everyone a warm cat, but understand the logistics behind such an offering.
It’s equally important to remember that even when it seems everyone else seems to have it worse, we are still allowed to acknowledge the difficult parts of our own lives. It isn’t being ungrateful or selfish, it’s simply being honest.
You cannot prevent the birds of sorrow from flying over your head, but you can prevent them from building nests in your hair — Chinese proverb
Just like birds, sorrows come and go — it’s all in how you choose to see their arrival and departure (and deal with the crap they leave in their wake.)
If you can, head down to Charleston and watch the birds. Promise it will soothe parts of your soul that have been uneasy for ages.
Maybe have a biscuit or two while you’re there as well.
If you’re into feeding your emotions, Charleston is totally the place to do it.
So this house is home base for me until Sunday, over dinner we nicknamed it Gosling Manor.
It’s the biggest house I’ve ever been in, and I was convinced houses don’t come bigger than this house until we went to the beach and saw this house:
I’m on Kiawah Island just outside Charleston in South Carolina doing what I do, traveling, writing, taking pictures of alligators coming out of sewers just down the street (!!!):
I didn’t even know Kiawah Island existed until I met Kim-Marie last month who has a summer house in Kiawah.
And now here I am, and it is beautiful.
I’m here as a guest of Wyndham Vacation rentals. There are enormous houses all around Kiawah, only 12% of them are occupied year-round. Many of the owners work with Wyndham to have them rented out to families and groups (like ours) the 48 or so weeks they aren’t in Kiawah using their glorious 6,000 sq. ft. beach houses. This house runs $1,798 a night over the 4th of July, however in October/November? $696 a night. But here’s the thing, it sleeps 14 — comfortably, with dual vanities and private bathrooms for all.
We’ll swim in the pool, cook in the fancy kitchen, sit on all the comfy couches, watch the giant TVs, go to the beach, talk about boys — it’s going to be amazing. We can even rent bikes and/or a private chef.
Kiawah is gorgeous, I’m a little mad no one has brought me here before.
Today was only day one, tomorrow involves carriage rides, antebellum homes, aquariums and ghost tours in Charleston. Saturday? Riding horses on the beach.
Cody asked if I’d like him to fashion a horn for my horse to wear to fulfill all my childhood fantasies of riding a unicorn on the beach.
I had to correct him — all unicorn riding fantasies take place in a misty, magical forest. Horse riding fantasies on the beach involve Ryan Gosling, shirtless, riding next to me.
Have you ever heard of this whole vacation rental thing? I’ll admit, before today I was convinced renting someone’s house was either a creepy Craigslist killer setup or only for the rich and famous.
Gosling Manor has changed my mind.
As a guest of Wyndham Vacation Rentals travel expenses have generously been taken care of for me, thanks guys. Opinions are as always, my very own.
Scene: Vivi has just woken up from her nap, she is grouchy and losing her damn mind. You are in the midst of dinner prep but dinner is still 30 minutes away.
WHAT DO YOU DO?
CODY APPROACH: Give her whatever snacks she demanded (CHEESE! CEREAL!), put her in front of the TV with Addie and not give a hoot about her ruining her appetite. Then wonder why she won’t eat anything he made for dinner when it actually came time for dinner.
MY APPROACH: Cut up the fruit and/or vegetable portion of dinner and offer it at the table. Refuse to give in to screaming for cheese and cereal and insist that if she really is hungry she can SIT AT THE TABLE AND EAT WHAT IS OFFERED. Resist urge to use TV as babysitter, ask Addie to step in as a distraction and hope they don’t end up screaming at each other over some random sequin or marble. Grit teeth and convince yourself that home cooked family meals are actually worth all the trouble.
ADDIE’S APPROACH: Convince Vivi to sit at the table using soothing tones and funny voices. Ask Vivi if she can pretend her cantaloupe is cheese and proceed to tell goofy stories as Vivi happily and quietly eats her cantaloupe with you. Once the cantaloupe is gone, ask Vivi if she wants her nails painted while mom finishes dinner. Paint nails, dinner done, everyone eats, everyone’s happy.
Here’s a hint as to which approach went down tonight:
There are moments when Addie is a lot older than 8, her patience with Vivi is astounding.
Cody and I have always worked together because where I am weak, he is strong. Where he falters, I step in.
As Addie grows I’m seeing more and more how perfectly she fits into her role as daughter and sister.
God knew exactly what He was doing when He sent us these two little girls to us when He did.
At church on Sunday a man talked about his dad:
“…it was said at his funeral that he had an abundance of energy with which to serve others because he didn’t have to waste much of it wondering who he was or what his purpose in life should be.”
I am not a runner and I am not meant to grow vegetables, and it’s okay. No more time wasted running to nowhere or growing an endless buffet for only rabbits to enjoy.
We took Vivi to the fair again yesterday, we even let her ride a few rides.
Y’all, Addie could have gone on all the bigger rides she wanted to but she chose to ride the little kid rides with Vivi. My heart grew three sizes, exploded then grew all over again while watching them last night. On the first ride they rode together Vivi squeezed Addie’s hand to the brink of blood loss the entire time, Addie didn’t mind. On the next ride (a tiny little roller coaster) Addie put her arm around Vivi and hugged her close, by the end Vivi had snuggled into Addie; perhaps a little scared, but safe and calm with her sister by her side.
My heart just exploded again thinking about it.
Vivi has asked all day if we can go play with the bunnies and horses, a true Hoosier that baby of mine is.
When I was in Texas last week for this lady’s birthday (surprise!) we went to a beaver themed convenience store where I found a toddler sized Willie Nelson shirt. Rachel told me I had to find a bandana, braid Vivi’s hair and send her a picture.
So I did: