Diagnosis: Transverse Myelitis
In 2006, I was a successful singer and singing teacher working all over the Midlands and had recently been married to a wonderful man I had known for some time. My children were both grown with partners and children of their own, and all was going really well. At 53, I still had a lot to do!
Then one day in early November it all changed. Following several trips to my general practitioner with what I thought was sciatica, I was referred to the Queen Elizabeth Hospital in Birmingham where I was diagnosed with TM. Within four days of admission I was paralyzed from the waist down. I remember feeling relieved at the diagnosis when it was explained to me, because I’d been afraid I had cancer – and I felt that with TM I wouldn’t die and could work on getting better.
A great incentive came in the person of my son, who was incredibly supportive – when I texted him in frustration because I couldn’t make my legs work, he texted back “if at first you don’t succeed find out what the runner-up gets!” He was getting married in a Scottish castle on the 30th of December, and I was determined to get there!
Christmas didn’t happen that year, and I came out on the 28th. We’d booked a place to stay in Gretna and took our time getting there. Although I was in a wheelchair at this point, I didn’t let it stop me getting up the long spiral staircase to the wedding chamber – and neither did anyone else! I was literally carried by two hunky men and deposited on a chair placed just for me!
In February 2007, my arms and hands became badly affected, which my then specialist brushed off as “a strange manifestation of the virus” – whatever that meant! I changed specialists, who then ordered an MRI and that confirmed I’d had another attack, this time higher on my spine. I then had the diagnosis changed to “Recurrent TM”.
To get the use of my hands and arms, I devised a series of exercises (my notes had been lost so I had no physio or medical input for nearly a year), and learned to use the computer again using Via Voice, which was hilarious. I kept a diary of my experiences of my first year as a disabled person, which was subsequently published.
Because I thought I would never be able to resume my career, I studied Neuro Linguistic Programming up to Master Practitioner level which took three years. During that time, I had a change of specialists twice more and several hospital stays for intravenous steroids as I had three more separate attacks – one more in the lower spine then two in the neck.
Each time I was in the wheelchair I was determined to get out of it, and I did (perhaps because no one told me I couldn’t). I had a series of adventures with hands and arms that didn’t work and a diaphragm bound so tight I sometimes thought I’d never breathe again!
Nearly four years ago I sat down one day and decided that I couldn’t live any longer without teaching singing again. I started in a small way and very part-time, but it felt absolutely wonderful to return to doing what I felt I was good at!
I will not allow the TM to define me. I’ve been seeing Dr. Jacob in Liverpool for the last three years, and because of the medication he put me on, I’ve had no more separate attacks, though I have had big flares when I’ve been through necessary operations. I’ve found a new career route in that I’m now able to run singing groups for people with Alzheimer’s and Dementia – which means that at an age when most people are looking at retiring soon, I’m striking into a different direction.
It’s still very part-time and will always be that way due to fatigue levels and pain, but it’s what I do and what I love, and that makes all the difference. I’ve kept my friends who’ve been through this battle with me and I’ve made new friends, some of them also with TM.
My husband – who never had the chance to live in a marriage in the traditional sense of the word – has been my rock and my supporter. He’s cared for me in so many ways and still manages to make me feel loved and special!
I have so much ahead to look forward to! Life may not be what I thought it would be, but it’s good!!
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