When I was just 26 years old, I found myself walking out of a genetics clinic with a diagnosis of Ehlers-Danlos Syndrome (EDS) — a group of disorders that affect the connective tissues (which support the skin, bones, blood vessels, and other organs and tissues). Symptoms vary from mildly loose joints to life-threatening complications.
From that day on, my life was forever changed.
Since not much research had been done on EDS, I was overwhelmed with fear. Reality was proving to be more difficult than I had ever imagined.
I could die from this.
Fast forward seven years and my days are filled with heart monitors for my postural orthostatic tachycardia, a cardiologist to monitor my aorta that may someday burst, and lung capacity tests for my decreased lung function. My routine now includes getting DEXA scans for my ever-worsening bone density and visiting the orthopedic doctor to monitor the screws, pins, and cadaver parts that hold my ankles together. Three times a week, a chiropractor realigns my skull with my neck so that my spinal cord is not crushed — a measure that is just buying me time for a spinal fusion.
I’m immunocompromised, on a limited diet, and in chronic pain. My medical bills from the last six months alone total over $30,000. And eighteen months ago, a federal court deemed me permanently disabled. My bad days threaten to outnumber my good ones, as the prognosis is that things will only get worse.
I get through these days thanks to my loving husband, of only a few months.
He must have been insane to marry me.
I think it was around our third date when I started to drop hints about my medical condition. Not having a dating handbook called, “How and When to Tell Your Date That You Have a Possibly Fatal Condition,” I had a long history of scaring men away. Either I would share too soon, not share enough, or break the news too late.
After driving around the movie theater parking lot, unsuccessful, I nonchalantly whipped a handicapped parking placard out of my purse and jokingly told him, “Hey, you’re in luck. I knew we might have trouble finding a spot, so a few years ago I got a bunch of pins placed in my ankle so that I could get this placard. I’ve been waiting for exactly this moment, you’re welcome!”
Probably thinking I was crazy, he pulled into the handicapped spot, and didn’t say much else. But, he didn’t run away either.
I continued dropping hints over the next few dates, not because I actually wanted to share my medical history with a man who I was possibly falling in love with, but because I respected him enough not to hide a very scary reality from him. He needed to know what he might have in store, so if he wanted to get out, he could do so soon enough — without stepping on both of our hearts.
Honestly, I can’t say why he stayed. I’d like to think that it’s because I’m amazing, so unbelievably funny, and incredibly sexy that it makes up for all of my broken parts. But I’m sure that it has more to do with him than it does with me. Maybe it’s because his own mother is disabled and uses a wheelchair, so he has grown to understand compassion in a way that escapes most people. Though, that would imply that he has pity on me — which I can assure you, he does not.
He just loves me, with all of my broken parts. Despite all of my flaws, he loves me. He sees my soul. He makes me forget that anything is wrong with me. It’s the same thing that I do for him, because neither of us is perfect.
I can’t imagine what it would be like to be married to someone whose days feel numbered, in the same way that I can’t explain what it feels like to wonder how long I have left. He tells me all the time that he can’t think about life without me, and I can understand that because I can’t imagine losing my life.
So we don’t live like I’m dying.
We went ahead and did all of the responsible things that we could, like drafting a will and discussing custody issues that involve the two children I brought into our marriage. I sent my lawyer a tear-filled, “If I’m no longer here” letter, and I’ve spent years writing letters of advice to my children in case I’m not actually here to give it to them.
We prepared as if I am dying, but we choose to live like I’m not.
We make plans, we dream, and we pray.
We pray a lot.
And I guess that’s all that we can do right now. He chose to marry me for our future, and so we will use whatever time we have together to live for it.
No one knows how long they have on this earth, so we aren’t going to pretend that we do either.