People have commented that I have an inner sense of peace about all of this. I suppose I do. I know that nothing I personally did caused this to happen. I cannot control what my immune system decided to do or not do. Do I wish that the doctors had figured out and treated my infection better that had been lingering since October? Yes. Do I blame them for what happened ultimately? No. I didn’t do anything reckless, I wasn’t in an accident. What use is it to gnash my teeth and rage? That just wastes energy towards my recovery that I honestly cannot spare at the moment. Am I sad over the mobility and independence for now that I have lost? Absolutely. Does it require a new frame of reference for the rest of my life? Yes. Will life take more pre-planning and lack some spontaneity? Yes. Is my live over? No, absolutely not, it just will look different.
As my wonderful OT Stephanie explained to me today, it’s not that you “can’t” do the things you used to do, it’s now that I will need adaptations and modifications to figure out how my body works now. That takes time, and practice. I just got reset back to a toddler level or less from the belly button down. It takes problem-solving and critical-thinking to figure out how to become a functioning adult again. Everything from dressing, to bathing, to housework (cooking, cleaning, laundry) taking care of my cats. OT will work with me on that.
PT is all about regaining the strength and strengthening up the limbs that are fully functioning to compensate for my left leg, which may or may not recover. PT and the docs won’t exactly say, but PT has said and started to prepare me for my new reality that I might be at least a part-time wheelchair user going forward. My right leg is waking up well, I trust it pretty well, It’s responding a little slow, but generally does what I tell it to. Because I was only down a week, my strength hasn’t degraded too much. My left leg is not obeying, I can’t get the muscles to coordinate well (though they say they are firing- I can’t control it) the balance is off. I can’t feel much on my foot, I can feel that it is cold, I can’t feel on the back of my calf, or the top, and I can’t tell whether my foot is pointed up or down.
That brings me to the next topic, and I might expand on this further in a future post. There are many levels of paralysis. It’s all based on where in the spine your paralysis occurred (Cervical level, Thoracic Level, Lumbar Level etc.) and which sides of your body are affected. Right now, all indications are that my Transverse Myelitis occured around T-12. They can’t pinpoint for sure, because I cannot have the MRI. T-12 means I have full control of my upper body and most of my trunk muscles. This is a great thing for my independence. From there my left side is much weaker nerve signal wise than my right.
I like to believe I am a firmly positive person. Does this situation suck? Yes, I am not denying that. I am in adapt and survive mode. I AM a survivor. I WILL adapt. I WILL NOT take a “woe is me” attitude. I WILL be a functioning part of adult society. I WILL be independent. I AM already walking again, but walking may not be my most efficient mobility going forward. I WILL play my viola. I WILL teach again. I WILL ADVOCATE for myself, and the tools and equipment I need to do this. I WILL be an advocate for differently-abled people because I am one myself at this point. Spinal cord injury is not the end. I am not going to let it be.