Putting myself Together, Literally
April 2008 Article - Julie Carter
Having Chiari AND Ehlers-Danlos Syndrome is a real juggling act, every single day. I wake up, and before I even get out of bed, I have to assess what needs to be re-arranged and adjusted regarding my bones and joints. I lay there and try to figure out what I did wrong while I was sleeping. Was my head turned at all, or worse, bent backward? Was my neck bent too far to one side? Did I lie on my side too long and knock my hips out of alignment again? The bigger question: Will I be able to get everything back in place and have it all stay aligned so I can pursue the goals I set and chase after the dreams I refuse to relinquish? Dang! I’d like to just get some basic things accomplished.
Having your neck, shoulder, hip, or any body part pop out of place is extremely painful; in fact, it can immobilize me for hours or days at a time. I personally go to great lengths to try to hold my structure together daily, and I have a very mild form of EDS. What must it be like for those who are living with the severe forms?
It’s a former ‘multi-taskers’ nightmare. First, it seems I have to tell my brain that IT is supposed to be doing the bossing around, yet my brain is just plopped there waiting for instructions and a cattle prod. It has been like this for years. I used to wonder if I had early onset Alzheimer’s, but I’ve been like this since I was a teenager. Now I believe it was and is the pressure of that crowded brain and lack of cerebrospinal fluid flow all those decades that has caused my cognitive dysfunction (the multiple concussions didn’t help at all either, nor the over-stretched spinal cord).
So much for my Captain James T. Kirk imitation… I used to be pretty good at barking orders and organizing events, now, it’s a major accomplishment just getting my body to cooperate. “Come on bones, straighten up! Muscles, what is your problem? Loosen up! Hormones, where are you? Please, I’m in rugged shape here. Get in line, everyone in line please. Collagen, where is the collagen? For crying out loud, one leg is two inches longer than the other, place’s everyone, please!!”
Its body chaos at least 20 hours a day and it is exhausting. It’s like living in a really old, fragile tent in a 50 mile an hour wind all the time. The amazing part is how big the role my mind must play in this near constant chore of collaboration and stabilization. If I don’t have a take-charge, all-conquering attitude, I can go down fast. One wrong move, like stepping off a curb too quickly, can throw my entire structure out of whack, so I have to pull myself together at every turn and concentrate on movement control. This is not a bad thing, but it does take a great deal of physical and mental discipline. This level of continuous concentration will often bring on crippling brain fatigue. I can usually feel it coming on, and it can be a multi-system shut down. Suddenly I am horizontal again, I cannot move. A simple phone call at this point is completely use-less, it’s like talking to a zombie, my word retrieval is nill. This used to scare me, but now I know it is a sign that I have pushed myself past my brain-injured, physically dysfunctional limits.
Luckily my family has seen this enough to know what is happening. They also know that there will be no rallying when I get to this point. It may take days to get to a level that is functioning again. This is how many of us live.
Anytime I am up and walking is a good day for me and I am grateful. Being a Chiari/Ehlers-Danlos patient is a struggle, and when you throw a lifelong, missed case of Occult Tethered (spinal) Cord Syndrome into this mix, pulling myself together is a grand accomplishment of which I am now proud. Instead of berating myself for all the things I started and never finished—because I couldn’t get up--I realize how much I have achieved in this unbelievable state of being. For me, it is exciting to see just how far I can go in this body, with its limitations.