Un-Masking

You are born with a connective tissue disorder that affects less than 1% of the population. No one in your family history has it. You perceive something is off, but you don’t ask questions. You are not yet competent in how to describe your body’s warning signs.

As you age, you examine those around you, looking for validation that you are not a freak. There are none. No one pays attention. Your house is mostly quiet.

When you ask, “Why do I get injured so easily?” everybody mostly frowns and thinks you are weak and can’t take it, because really, you’ve had to make excuses your whole life. You were the master at devising stories to get out of contact sports. When you found a sliver of success in cross country, you wound up injured week after week, the coach and teammates telling you to just “stretch and rub your legs more, hydrate, get different shoes, push through the pain.” You never join a running club because no one would understand your unpredictable tears and strains, the inability to go more than a few blocks without stopping to stretch, saying “I’ll catch up” when really, you’d just walk back home. You were the master at masking, and as you become a bona fide expert at it, it surfaces in other parts of your life. The ‘nameless’ disease creeps in and takes hold. Silence reigns.

You move through life not knowing your condition is called VEDS, Vascular Ehlers-Danlos. You’ll have a heart at age 34, a stroke by 44, and a ruptured colon at 47; textbook events, but no one will ask the deeper question. Your ex-wife calls you “unlucky.” Your kids have a fifty percent chance of inheriting the COL3A1 gene, but dodge the genetic bullet. All of the collagen you put in your smoothies was in vain, as your missing gene is the one holding the instruction manual on how to build collagen. You move forward.

You will go through bouts of depression between the near-fatal episodes. You will consider taking your life after your stroke in 2017, the stroke you suffered while competing in the Leadville 50 mountain bike race, before you were diagnosed. The ER doctors will tell you your brain is full of aneurysms and try to put you on Plavix, the same Plavix that nearly bled you out on the Appalachian Trail in 2007. You move on because that’s all you know how to do. You know how to survive.

You tell yourself this is a blessing. The condition makes everything more immediate, more risky, more visceral, the margins shrunk to the edges. You thrive on the slackline of life, it makes you tick, gets you up at 5:30 am to take on the world, to mountain bike in Moab and ski moguls in Beaver Creek, to run two blocks today in the hopes it will be three tomorrow. You are no longer afraid of dying. You are silent no more.