Let’s go back to the walker story. Quick recap: 23 years old, just starting a new job. I had tripped over a walker and done something serious to my shoulder. My car blew up, my wallet fried in an MRI and I had gotten impaled by a dye needle. Basically, life had gone down the tubes on me in five short hours. I was still rocking the shoulder sling, waiting on the results of the MRI.
Let’s zoom up a couple weeks to my next appointment to get the MRI read. I had had to reorder every card that had been in my wallet, get my radiator fixed and somehow work my dispatching job with one arm. By the time I walked into the appointment, I was refusing to wear the sling any longer. My shoulder had slowly gone back up into socket. It rattled around, still very loose, but it was staying in for the most part. The nurse led me into the exam room and I resumed the battle with the Q-tips in my hands while I waited. Finally the nurse came in and told me my rotator cuff wasn’t torn. She had been so sure last time! The doctor came in and showed me on his laptop.
Doctor: We have something very unusual here. Your rotator cuff isn’t torn; it stretched.
I stared at him blankly. Stretched?
Me: So how are you going to fix it then?
The doctor pointed out details of my shoulder capsule on the computer as he answered me.
Doctor: This is your shoulder capsule. It’s stretched to about three times the size of what it is supposed to. If we did surgery, we would fail. It seems like you just have stretchy tissue, so you would just stretch out again. I know it hurts and you can’t use it as much, but there’s nothing we can do. I can refer you to physical therapy but for people like you, it can help a little but we can’t make it completely better.
There was silence. The worst possible outcome I was expecting was to be told I needed to have surgery sooner rather than later. The next worst would be that I would need surgery but would be able to delay it, but this?! It hadn’t even crossed my mind they wouldn’t be able to fix it at all. My other shoulder was the one I considered to be my bad shoulder; I NEEDED at least one working arm. The feelings started washing in over my shock. I didn’t want to get upset right in front of the doctor so I did the one thing I could think of to push back my feelings: I grinned, seized the skin on both sides of my jaw and pulled. My skin had always been very elastic; this was my signature face.
Me: Stretchy like this?!
This was the face I made at him:
Sexy, I know.
He sat back and looked at me incredulously, muttered something and walked out of the exam room. The moment the door closed I let my defenses fall along with my face. I hurried out of the office and went home. It was Thursday.
I went to my Bible study that night. Everyone had seen me rocking the sling and wondering what the MRI results were. They too had watched me come back time and again from the hospital with one crazy thing after another. All of us being 20-35 years of age, they were far less discreet (especially the girls) with their assumption that I was making it all up. I knew when I walked into the building that evening with no sling and a story about how the doctor couldn’t operate, I was going to be a laughingstock. They didn’t let me down. We went out to dinner after the study and the gals mocked me openly at the table. I gritted my teeth. This wasn’t supposed to be what Christians did. I knew a lot of people didn’t believe me, and I didn’t blame them. Many at least pretended to humor me to my face and still loved on me. It stung, but it would get much worse after the news in the coming weeks.
That Sunday, I went to church, socialized and cradled my arm every time it stung. I made a point to limit contact with people, arriving right before service and leaving a few minutes early. For me, it was a walk of shame but every sermon I sat through put another spark of life back in my heart. I knew I would have to face everyone at some point, so I wasn’t going to let cowardice cost me those little life sparks. Driving home, I shouted at my passenger’s seat. I figured God was sitting there and I wanted Him to know exactly how pissed I was. When I was a kid, I was a compulsive liar to get precious attention and love. Freed of lying, I had so many crazy chapters that people assumed I was a liar. I had even started making up a normal, boring life story but at the end of the day, the only truth I had to tell just wasn’t believable. It was becoming a major barrier in my relationships. It still is. I arrived at home.
I angrily emptied my pockets onto my desk. My wallet hit the desk hutch with a clang. Ruminating over my shoulder and largely cranky from the pain, I decided to get a second doctor’s opinion. No way I was going to live with this kind of pain. I couldn’t even heft my backpack without pain. My phone rang. I glanced at the screen; it was an unknown number. Usually I reject such calls but compulsively, I answered.
Voice: Is this Skye? Skye Galvas?
Me: Who’s asking?
Voice: I read your MRI and looked at your shoulder. I’m Dr. ______ from Thursday. Do you have a minute?
Me: It’s Sunday. Why are you calling me on a Sunday? And why aren’t you calling from the office?
Doctor: I’m sorry. I’m calling you from my personal cell. I was reading case studies on rare diseases. I know what’s wrong.
Me: ….you said I’m too ‘stretchy’. You already told me.
Doctor: Yes, but you stretched your face at me. ‘Too stretchy’ is a collagen problem. Are you near a computer? I need you to look something up.
I booted up my computer, completely skeptical. Thoughts swirled through my mind. What could it be? Why did it mean so much to him that he would call me on the weekend? Maybe this was some really lame scam.
Me: Ok. I’m online. What exactly do you want me to do?
Doctor: I need you to look up Ehlers-Danlos Syndrome. I don’t know what type of it you are, but you seem to have all the symptoms for it. Try Googling images.
I hopped on Google. We all know that when we look up symptoms, medical site will tell us we are dying from cancer. When I saw the pictures after searching Ehlers-Danlos syndrome, I was blown away. First, I learned that it was also known as the Contortionist’s Disease. Next, I started rolling through one image after another of contortions and symptoms that I had, but had thought were normal. I switched to Google word search and started reading diagnostic criteria and facts. I lost myself in the vortex of a sudden, very clear new realization.
Doctor: Are you still there? Did you see the pictures?
I was distracted. Suddenly, I knew. All my mysterious, and unbelievable medical issues made sense, tied together under this one illness. Here are some of the symptoms that I had previously thought were innocent quirks:
For 23 years old, this was a royal shock Apparently, there were 8 different types, numbered in order of severity and I immediately decided I was Type 3, the most common type.
Doctor: You need to make a an appointment with your primary care physician and get diagnosed.
Me: I will. Bye.
I made an appointment with my new doctor for Monday. I walked in and said I thought I may have Ehlers-Danlos syndrome. The nurse looked over my symptoms and exclaimed she she somehow had a neighbor with the same thing. At first, she reassured me that she had a normal life. She talked for a while about the various medical issues her neighbor had and I began to realize the illness really doesn’t allow for a normal life. Great.
Several doctors came to see me. They were so excited over such an illness they had suddenly made the time. I sat there while they excitedly grabbed my arms, legs, and made requests for me to contort my back. When I told them of my heart and organ problems, they pretty much lost their minds with glee. Rare, if not ultra-rare illnesses, were what really excited them. I understood the nerdiness but this was MY LIFE. I stepped out of my mind, suddenly becoming legitimately fascinated with the way someone had grouted the tile and evaluating how straight the floor trim actually was. If I really had this illness, my hiking addiction was over. My running and biking addictions were over. Everything I did to escape myself was going to end soon. The doctors called the genetecist at the children’s hospital (they were the only ones with experience with the syndrome) and told me to set up an appointment. I numbly took the phone and scheduled with the voice on the other end. It was February and their next appointment was in September.
I settled back into my homeless mentality; I was just living to get through the day. I showed up for work, murmured to my dubious boss that I may be diagnosed with a rare genetic disorder and carried on through my day. My appointment had bumped up and I was scheduled to see him in two days. Looks like he was excited too. I was mentally begging for some kind of misunderstanding, I was really going to be a real life Elastigirl? no way.
After talking to my ever more skeptical new boss, I walked up to the Children’s hospital. Only a highly specialized geneticist was qualified to diagnose me.I knew I was seeing a geneticist less experienced in EDS, but I took what I could get. I ran through my genetic tree as best I knew with the nurse, had my cranium diameter and everything else imaginable measured, and then waited. I packed myself into one of the dozens of brightly colored kiddie chairs and numbly watched two Down’s syndrome children coloring wildly. I briefly smiled as I thought of how much teasing I would get if my friends saw which crowd I was categorized with.
Finally a couple residents walked in and showed me to an exam room. They wanted to build my genealogy. Poor kids. I didn’t know very much but I told them what I knew. They were fun and excited; they had a chance to look at a person with something extremely rare and they could not for the life of them hide their nerdiness. They bustled and gawked, then left, Finally the genetecist came in.
It become immediately apparent from my online EDS studies that this guy didn’t know a whole lot about Ehlers-Danlos Syndrome, but I did my best. I went through the Beighton Scale test and scored 9 out of 9. After contorting myself for this guy, I failed my test; I definitely had this chronic illness. As the doctor spoke to me, I noticed a minuscule spot of mustard on his tie. It was more than engaging; it was distracting and then engulfing. I watched it as he spoke. In my haze of shock, all I remember of his voice was that he sounded like the teacher from the Peanuts show. I hated him. I hated this children’s hospital, where I had to pack myself into mini chairs and where this department only ever saw Down’s children. I hated the children in the waiting room that I had doted on just an hour before with my hips locking me into the chair. He said something about a biopsy to determine which of the eight types I was. The tests were expensive but I nodded anyways. They took the biopsy and I stumbled out to my car.
I drove home and apparently the only music on the radio was about dying and/or giving up. Sitting on my bed, my world still seemed surreal. No matter what the type diagnosis was, I knew my life expectancy was shortened notably. My hopes that my bizarre health issues were just a temporary fluke were smashed. I finally knew that I would slowly degenerate and fall apart and that there was no cure. My vision zoomed in and out but never focused. I called a friend. No answer. I called another, then another. No one picked up. I texted my ‘adopted mom’ telling her I had been diagnosed. Not realizing what it meant, she replied saying she would Google it. I lay down and it consumed me. Sitting up, I decided to escape my thoughts and reality and grabbed my keys.
As I whipped through a mountainous corrider, I contemplated how I could fly off a cliff without anyone really ever missing me while averting the odds of a long life of pain and suffering. I’d had one joint and organ issue after another, but I had never imagined it was actually something. When I saw my statisitcal prognosis, it sent me off the edge.
How could I have endured so much to waste away and die?! I was furious, even in my shock. I had been through so much so why would it end at such an abrupt, depressing chapter!? There was supposed to be a happy ending! I was supposed to have more!
The next week at church, I finally told my Bible study group of the diagnosis. Eyes rolled, noses snorted and snide comments were thrown around. I had hoped to lean on them for this tough news; in short order I realized they would really just bring more pain with the skepticism. While I was coping with my diagnosis, they were shunning me as a liar. After all, things like this just never happen. When I finally got to see my adopted family, they were floored; my adopted mom’s eyes grew wider and wider as I explained the illness and how it explained everything that had happened. She understood the implications. My adopted ‘grandma’ Ann also understood. She invited me into her Bible study and took me to dinner. She did have a good point: If there was ever a time in my life to be diagnosed, this was the best time. She and my adopted mom made every effort to be present at the parade of specialist appointments that followed. I was grieving hard.
Obviously, I still have Ehler’s-Danlos Syndrome. The biopsy tests came back saying I have Type 7a, one of the most severe forms that include multiple types of organ, nervous and major back complications. I try but can’t hike far anymore and resort to a wheelchair for events that involve a lot of standing, as my lower back has begun to deteriorate. I have multiple pain management doctors and have had more surgeries than I can even remember, but I am still ok. As I lose one ability, I learn another. The walker that brought me down and started this chapter forever changed my life, but I have decided it’s not for the worse. I have had coworkers threaten me playfully by placing walkers around my desk. I get a pretty good laugh at people’s reactions to my little party tricks.
Friends, never forget: Happiness is a choice. If I continually tell myself I am dying/very ill, then there is the living part? Choose life!