My Life with Ehlers-Danlos: Hope Floats If You Let It
December 16, 2015
By Tiffany Early
One summer when I was around 9 years old, my mom took my older brother and I to ride bumper boats. (For those of you who haven’t had the whole bumper boat experience, it’s basically a tiny one- person boat with an inner tube around it that you ride in a pool. The bumping creates a splash . . . you can see how a kid would totally get into this.)
The boats have a little stick that you’re supposed to use to steer, but apparently I just didn’t get it. As soon as I got into my boat and the ride operator shoved me away from the edge of the pool, all I could do was drive in a circle. My older brother was delighted by the sight of his squealing sister spinning in circles and seized the opportunity to bump me repeatedly. He eventually bumped me under a waterfall in the pool- that then soaked me and began to fill my little boat up with water. My brother bumped; I wailed. I cried as my life flashed before my eyes. I had seen this scenario enough on television. When the boat filled with water, my boat would go under, and I would drown. How could my brother think this was funny? My poor mother- watching her youngest child sinking . . . Eventually the ride operator had mercy on my total lack of boat maneuvering skills. He jumped in the pool, walked through the water to me, and pulled my boat back to the side of the pool so I could disembark.
Looking back on this misadventure, I realize something that I was incapable of seeing then- at no point was I in any danger. I was in shallow water. I could swim. The little boats are designed to not sink. There was some way to actually steer the boat; I possible could have figured it out if I had calmed down long enough to try. (Although given my history of steering things, the odds weren’t in my favor.) Here’s my point- the situation wasn’t hopeless. It just felt hopeless, because I couldn’t comprehend anything beyond the water pouring down on my head.
Now, 20+ years later, I’m not sure my maturity has gone far beyond those days of spinning and crying. When I’m not in control of a situation, I start to feel helpless and then hopeless. Living with Ehlers Danlos Syndrome, means that I experience frequent dislocations, but typically in the same 4-5 joints. So, when a new joint becomes affected, I mourn its loss of usefulness. A few weeks ago, my fingers began routinely dislocating. I popped two fingers out trying to open a cookie container; three more dislocated while trying to push the trash down in the garbage can. (Do normal people do that? Do they keep pushing trash down so they cram a little more in before having to take the trash out?) Finally after a night of trying to relax while doing one of those adult coloring pages (ahem, adult difficulty- not adult themed), my fingers were such a hot mess that I couldn’t hold a marker. I stayed awake until 3 AM icing my fingers and mourning their loss.
In that 3 AM funeral for my finger joints, I was little more than that 9 year old spinning under the waterfall crying. I imagined all the things I would have to give up if my fingers quit working. Cooking, typing, applying makeup, texting . . .! But . . . just like in my bumper boat experience, I wasn’t exactly thinking clearly. That’s the thing- when fear creeps in, hope fades away. I became so terribly afraid of losing part of me, that I lost all hope that life could ever get any easier. I forgot that I am hopeful that someday there will be a cure or at least an effective treatment for EDS. I forgot that I am hopeful that my upcoming appointment with an orthopedic specialist at Vanderbilt could help. I forgot that there are finger splints and braces that keep the joints from dislocating. I even forgot that I can verbally dictate a blog or a text if my fingers won’t cooperate. I became so very scared that for a little while I forgot about all things that make me feel hopeful.
I am hoping that by writing this I am making myself more aware of how paralyzing my fear can be, so that next time I see it for what it is. Fear is robbing me of hope. The next time that I turn into that nine-year-old bumper boat mess- frozen with fear and spinning in circles- I have a question to ask myself. “Is there any possible way that this situation could ever improve?” You know what? The answer will always be yes. Even if all I have is just a tiny glimmer of hope that maybe the next doctor’s appointment or the next physical therapy visit will provide some answers or relief, there is always hope. If fear is strong enough to chase away hope, I believe that enough hope can possibly drown out the fear.
Having said that, there’s not enough hope in this world to ever get me back in a bumper boat.
Peace, love, and health friends.
Tiffany Early is a 31-year-old former middle school teacher who enjoys blogging from her back porch. She is an advocate for Ehlers Danlos Syndrome, Dysautonomia, and the chronic illness/ disabled community everywhere. Tiffany lives in Campbellsville, Kentucky (roughly the middle of nowhere) with her super fabulous husband Joe and tiny but aggressive dog, Zoey. She enjoys adventures with her husband, Netflix marathons with Zoey, and hanging out with her family- especially her super cute nephew and niece, Hagan and Mia.
Tiffany manages her blog ( www.crazychroniclife.wordpress.com ) where she examines life and relationships with chronic illness while laughing at the absurdity of the whole debacle. She also writes about her adventures in “Snooki”- the attention-seeking wheelchair. She also runs an online support group for those living with chronic illness. Tiffany strives to find the bright side . . . or at least the humorous side to living with Ehlers Danlos Syndrome every day and wishes peace, love, and health to the entire rare disease community.
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