100 days to share 100 stories.
100 days to tell the world.
100 days to spread hope.
Fight rare neuro-immune disorders. Together.
Today is 13 October 2016, 8 years to the day I was advised by my GP to go to A&E (Accident and Emergency) as soon as possible. I was feeling strong pins and needles, and shooting, stabbing pain all throughout the saddle area. Sitting for any length of time was painful. So was standing. Walking was painful. I was due to deliver a presentation that evening, but going to A&E took priority.
In A&E, a host of tests were done. Despite being in pain, I was pretty relaxed, chatting with my husband and making my way through a bag of Haribo sweets he brought me. (Learning: Do not eat sweets whilst in A&E. It wreaks havoc on your blood sugars, and the nurses ask you all sorts of questions about whether you are diabetic and may not be convinced if you tell them no.) They wanted to admit me. I was meant to fly to the USA in three days for my sister’s wedding, so I wanted to return home. They strongly advised me to follow their advice.
Tests commenced. Long sessions in the MRI scanner. A lumbar puncture that took a longer needle and 3-4 tries. I had to remind the very excited medical students that there was a patient at the end of the needle who was scared, in discomfort and needed to be looked after. With each passing day, the pins and needles and stabbing and shooting pain progressed down my body. Banding pain joined the noisy party inside of me. Walking felt like pushing through the heaviest of treacle and my legs felt twice the size they actually were. I acquiesced to using a wheelchair. I never made it to my sister’s wedding.
The pain, odd sensations and banding crept above my waist. More tests were ordered. Water hitting my skin and wearing clothes became painful. I couldn’t sense temperature either. But I still showered telling myself I was going to maintain a routine and be clean despite everything. Time feels plentiful in hospital so I laid there doing visualisations of a healing white light going up and down my spine and forced myself to walk as far as I could.
A surprise for me and highlight for the neurologist leading my case was accidentally discovering that I have another rare neurological condition in her area of expertise – movement disorders. So I was discharged from hospital with two rare neurological conditions! But in relation to Transverse Myelitis, they only told me that I had ‘inflammation of the spinal cord’ with two lesions at C4-C5, was seriously ill, should not work for several months and rest. I was worried as my job had been made redundant earlier in the summer and I was actively looking for work. But I was forced to rest because of the fatigue and pain.
I learned of my diagnosis in a letter the neurologist sent to my GP, a copy of which was sent to me. In it was written ‘cervical myelitis’. So I naturally turned to Google and what I read scared me. I experienced so much anxiety and fear for my health, my future and my life. However, I also found the Transverse Myelitis Association and Transverse Myelitis Society, the latter being in the UK where I live.
The months passed and bit by bit, I improved. The fatigue started to dissipate. I swam and did yoga. I started a new job. Nine months later, I still had sensory disturbance, neuropathic pain and some fatigue. The neurologist said that might be it for the rest of my life. It felt like something finished when I heard that prognosis. A finality. On the outside, I looked and functioned normally. All things considered, my recovery was a good one.
I got involved with the TM Society and offered my skillset of NLP, coaching and adult learning to use for the benefit of members through presentations and articles. I had been using my skillset on myself and found it immensely helpful. In 2010, I was asked to join the TM Society’s management committee. In 2011, I started a masters in coaching psychology and focused my research on the impact of coaching on the wellbeing of people living with TM and their primary caregivers. I was curious whether coaching could help people find a way to live well (enough) with the impact of the condition. It can.
In 2013, I became Chair of the UK TM Society for a three-year term which finished earlier this year. For me, because my recovery was good, it was an opportunity to use my skillset in a greater way for the benefit of our members. This aligned with my values of being in service to others and developing myself. I enjoyed introducing new services, events and information for our members: the Coaching Bursary Scheme, an Equipment Grant Scheme, the Family Weekend in the UK, and information such as the TM Condition Insight Report and Frequently Asked Questions.
Even though I have stepped back from the Chair role and the TM Society’s management committee, I am still involved as a volunteer. Separately, I am helping a neurologist design a research project on TM and we hope it will get the necessary funding. This all feels like good work to be doing. It is also work I very much enjoy and wonder if ‘work’ is the right word. I am grateful for the opportunity.
So I think back to 8 years ago today and to the day I felt like something finished when I was told my prognosis. I look back at my involvement with the TM Society, the healthcare profession and charity sector in the UK, and my coaching work. It makes me think of Kintsugi bowls, which someone reminded me of as I was writing this post. They are Japanese bowls that have been broken and mended with gold seams. It’s about honouring the wound and beauty from the brokenness. So our bodies may have been wounded. At times we may feel that they are broken. But beauty can spring forth from the brokenness. And that is my hope for all of us affected by TM, AFM, ADEM and NMO, including our children and families: may we nurture and grow the beauty that we still hold within us.
MEET OUR OTHER HOPE AMBASSADORS
SUBSCRIBE TO MEET TOMORROW’S HOPE AMBASSADOR