100 days to share 100 stories.
100 days to tell the world.
100 days to spread hope.
Fight rare neuro-immune disorders. Together.
Almost 12 years ago, I was skiing when my left toe started to tingle. That sensation went up my leg to my hip, then started up my right leg. My skin felt like a bad sunburn with bee stings on it. My legs collapsed underneath me and I crumbled to the ground like a melting snowman. It took me 20 minutes to get up and slap one ski over another into a beginner’s snowplow. I slowly skied to the lodge.
I finally got a ski patrol gentleman and for 30 minutes convinced him that I did not have just a wee bit of frostbite, but there was something terribly wrong. Eventually, I was diagnosed with TM, given steroids, and airlifted home. My point of incident/lesion is midway down my ribs. I was sent to a rehab hospital for a month to learn to walk again. The biggest breakthrough was the heated therapy pool. Having been a swimmer all my life, my body seemed to begin to remember how to move through water. I knew if I could move in water, I could eventually move on land with gravity. I do not do well in captivity so they let me go after a month and I returned for a year as a day patient.
Today, I am still on Gabapentin, Tramadol and sleeping pills to get through each day. But I can hike, drive, and garden some (although getting back up looks like a beetle on their back flailing arms and legs hoping to right itself). I can’t wear a heel higher than a flat (that is a girl thing). I have med-head and I am not getting any younger so the memory thing is shot—thank the lord for “Okay Google”. Albeit Google does not usually know what I came into a room to do as I stand there scanning the room looking for clues: my keys? my glasses? my phone? or a sandwich?
One of the best things that ever happened to me is meeting Sandy Siegel and the Transverse Myelitis community. I realized I wasn’t alone. I was encouraged to write my humor/inspirational book about the ordeal of being hospitalized with TM, “Scrambled Leggs… a snarky tale of hospital hooey” (Amazon/Kindle). It tells in detail how much goes wrong with the body and how often people don’t get what invisible pain is like. And how after you return home, your support system is tested and for many of us we got to find out that the vows of “in sickness and health” meant their sickness and our health. So along with chronic pain, many of us suffered divorce, loss of career, loss of community, and also loss of social interaction. And oh yeah, I leaked bodily fluids like Daffy Duck after Bugs Bunny shot him with buckshot. My body gave me little warning on peeing, pooping, and even crying.
Add to that the neuropathy demons, call them legion. Hyper skin sensitivity, shooting electrical currents from toe to hip, flaring ribs, banding (feels like wearing a girdle too small), phantom pain like searing heat patches or ice cold feet. The thing is all I (we) want is to fit in and get our life back. So we get up and do what we can facing all those demons. We push through all day long. Because there is no other choice except death.
And if one more person coos, “You are so courageous.” I may go Tae Kwando on their butt, seriously. I am not running into a burning building saving someone else (that is courage). I am simply crawling out of the burning building to escape further pain. And if you have TM, you are joining me every morning.
Just keep on keeping on and reach out to your TM community. We get it!
MEET OUR OTHER HOPE AMBASSADORS
SUBSCRIBE TO MEET TOMORROW’S HOPE AMBASSADOR