Eight years ago at the age of 52 I was diagnosed with NMO. I became fully quadriplegic before I was able to be turned around by God’s grace, lots of determination and the fine work of my physician and care team. When looking back, I see several hints that I might be prone to, or already developing and autoimmune disorder. Even as a child I had a rounded belly, later testing showed that I am allergic to gluten, and I probably was from childhood. In my early 20’s I spent part of a year mainly in bed and close to washrooms with what we presumed was irritable bowel syndrome. About 5 years before my diagnosis I had an attack of what I feel was the first hint of optic neuritis, prisms and floating things in my eyes, and later a repair of the partly detached retina. This was thought to be adult onset migraine at first.
I think the first signs of a multi-year engagement with NMO were the very high fever, dry cough, soaking wet all night in bed, while in Europe. I thought I had a bug, and ignored it. Perhaps this fever was associated with the time about a week or 10 days later when I developed this crazy triangular itch on the back of my head in the brainstem area. Maybe the blood brain barrier was compromised then, I don’t know.
Anyway, this progressed over several weeks to staying on the couch at home, missing work, tired, visits to doctor with increased paralysis and numbness in the left arm and foot, legs, that tight band around my ribcage. From the left side, across my hips the paralysis became virtually complete. Over 2 months, without a diagnosis, perhaps transverse myelitis, then MRI, ambulance to a major hospital. Many interventions, including IV steroids, Plasmapheresis, IV IG, finally mitoxantrone, which started to reverse my paralysis which was all the way up to my swallowing reflex in my neck. Blowing on a puffer to call a nurse, repeatedly in ICU, in hospital for 5 months, and in a rehab center for 3 months. So many amazing experiences, fully plumbing one to the depths of beliefs, soul, capabilities, a reversal of almost all life attitudes.
Without the love and persistence of my husband, my parents, and family, I would not be here today. As nerves were working to re-connect, I was wracked daily by the spasms more painful than anything I have ever experienced. How lucky I was. Every stage, the lift to put me into a wheelchair, the overwhelming sensory overload from people talking, bright lights, too much squeezing of an exercise ball, could plunge me into total silence, lying in bed in the dark, for a day or two, before re-orienting. Mentally I was a blank canvas, no longer in love with my work, not even having a frame of reference to put this catastrophe into. Not able to start to be “myself” again.
Over the years I have put the work, and the determination into a new life, and you can too.
I now can walk small distances and was able to travel to Europe this year. Victory! I can cook, dress, engage in work and social activities. I no longer use my scooter, just a cane. I have many of the issues you see online, with fatigue, pain, balance, bladder and bowel among them. I advocate for a cure for NMO, and for climate protection. I eat carefully and exercise daily. I can laugh, smile, be loving, caring, contribute. Together, we will make a difference.
