he greatest misconception I had growing up – that death was the worst-case scenario in ANYTHING. You think that’s it. Death is the worst. Wrong. And that’s my opinion, well it was then. Feel free to feel differently. Quadriplegia is my worst-case scenario now.
It was death until the prognosis of quadriplegia walked and and MS and spinal disease took away my legs. The legs that got me though marathons, through teaching, through running after babies. Through life.
There was nothing so fear inducing than picturing the rest of my multiple sclerosis life as a quadriplegic. I always thought death would be the scariest. It isn’t for me anymore.
This prognosis did lead me to conversations with God, an exploration of faith and trust and mercy and Grace. Many opinions have changed. Going home to God and Christ (sorry to those who are not of this faith or any, I have to share because it’s crucial to my journey) isn’t that scary to me. There is peace and eternal rest for me there.
BUT, the idea of me having zero control of my body, with my husband gone…is my worst fear.
I have that one-time love. The kind my friends punched me in the arm over and wish they too found that “one”. I do feel guilt that I was blessed in this way, through no good deeds of my own. I was an asshat in my younger years. I made mistakes. Chose all the wrong things, until he walked in the door and our eyes met.
He was the one thing I got right. But it wasn’t a choice. We both looked at each other like we just found our long last homes. It was written somewhere else. We were characters, not the authors. And we were found. So my life, began in many ways, with him. And it, I pray to God, ends with me in his arms. The other possibility is he goes first and I’m a quadriplegic, alone, exposed and vulnerable to men who are not him. People who are not him. My mind runs amuck with all the awful possibilities.
Like with my family is HAPPY despite the prognosis possibilities because we are happy. We are cozy. When MS hits us hard, we get tighter. The circle closes like a football team before the next play. We huddle warmly, put our arms in and shout, “We are still TOGETHER and have everything we need!!” Life is good. WITH him and the kids.Life without my soulmate and protector and best friend beside me, scares me beyond anything.
So we do have a great life, even when it’s hard, but it doesn’t mean moments of MS terror don’t sneak in at night when I’m alone. Every night, the door that opens the MS terror – is me attempting to wiggle my toes on my right foot.
I know I shouldn’t try. I know how much it scares me. I can’t resist.
Imagining me willing with every bit of everything I have and am, to wiggle the first three toes on my right foot. Nothing.
It sounds small. No biggie, right?
Until it’s you. It is the scariest freaking thing. I can’t wiggle my toes on the right side. Sometimes I get so so frustrated, I throw the blankets off and use my hands to wiggle them. Other times I lay there, paralyzed by the fear on every level, and just listen to my husband and his breath beside me as he sleeps. I focus on his breathing until it calms me to sleep.
Side note: Some of us are in different places. I know some people who are doing great things with MS, physically. Great, yes? The only problem, as someone who has it in their spine and now spinal disease – do not give me a lecture of will. So many have implied if I had had the will, I could beat this. So many of my friends had great will and lost their battle, to MS, to cancer. If this was about WILL, I’d have a cure.
I have fought this disease for years – refusing to file for permanent disability when my doctors said I had to SEVEN years ago. I couldn’t continue teaching, started my own company and became a writer. Published a book, working on the second. Please, don’t give me any great WILL lectures. You are blessed that you can use your great will to conquer this, but it doesn’t mean that others, with a more progressive form, aren’t strong-willed. That is my biggest pet peeve among my peers. People comparing their wellness to others and believing it’s their awesomeness that makes them prevail. It’s insulting. It’s a mixture of will and your disease behaving. many of us don’t have that fortune. We have will alone and, sadly, it is not always enough.
Okay, back to paralysis and wiggling toes. You don’t know how scary the loss of even the smallest parts of your body is terrifying, until it’s you. That’s the bad, sobering reality.
The good news– researchers in Britain have used patients own blood to create stem cells, rebooting their immunity so to speak, and it’s reversing paralysis in some of the patients in the trial. Patients who have been paralyzed for years, are walking!
The Guernsey Press reported:
About 20 patients have received bone marrow transplants using their own stem cells in a clinical trial at Sheffield’s Royal Hallamshire Hospital, which is also being run in the US, Sweden and Brazil.
Some patients who were paralysed have been able to walk again.
Professor Basil Sharrack, from the hospital, said: “To have a treatment which can potentially reverse disability is really a major achievement.”
So I am keeping this short – hope springs eternal my friends. Hope is here. It never left. With every horizon, there’s hope and don’t ever let go of that. Hold on to that instead of doing what I do with my toes at night, scaring myself. Hold on to the hope and let that lift you up until we are all lifted, literally, up from this disease. Cradle this as you fall asleep at night, and not your fears.