6.
SOLIDARITY
“Let each of us lead a revolution of support in the lives of others.”
Sometimes we end up alone in the unknown, unable to share our fears, unable to talk about what’s happening. We can be robbed of our voice at the edge, struggling to make sense of where we are and what is happening to us. Tanya Downs had always thought she knew where her life was heading. Then, at the end of 2009, unexpectedly she received the dreadful diagnosis of Multiple Sclerosis (MS).
“Previous to this I had been working full-on for a nice guy I affectionately call ‘Captain Chaos’. It was an incredibly stressful environment, especially as three people had been made redundant and I was basically doing a three-person job on my own. Did I do well at it? I excelled in my role with Captain Chaos… even though I hated it. I was an avid cyclist and a heavy gym user, so I had a very active work and personal life.”
Tanya’s symptoms had started years before, with severe dizziness coupled with sickness, and pins and needles. It was only when she told her doctor that her pins and needles were spreading over her body that she was sent to a neurologist, who sent her off home with a very heavy dose of steroids. It was only when her eyes went “wonky” that Tanya was admitted into the neurological ward of St Georges Hospital in Tooting, London.
“I came back to my bed to a neat little folder entitled ‘Information on Multiple Sclerosis for the Newly Diagnosed’. And then a locum doctor came up and confirmed I had MS. Everything I had been working towards suddenly was no longer an option or a consideration. Life changed with those few words in an instant.”
She asked every neurologist she saw what her prognosis was, but nobody was able to give her an answer, or any indication about what her future held. Tanya felt mixed emotions, from relief that she finally had an answer to the strange symptoms she had been experiencing over the years to a resignation that she had a degenerative condition. She left her chaotic boss, removing herself from stressful situations and surrounding herself with positive people.
“My first MS nurse said to me when I was diagnosed ‘Tanya, you will have to build your own support network’, and I realized quite quickly that was exactly what I’d have to do."
Initially Tanya went onto the MS Society’s website and chat fora, and discovered various pages on Facebook. After a while, though, she found these groups highly depressing and negative. Feeling that there had to be another way that women united with their condition and their own life experiences, and could converge and support each other, she decided to start her own network, “Ladies with Lesions” (LWL). The website and Facebook (private) group now boasts over 1,200 members in the UK alone. From that success she went on to start other support groups, including a support group for men (MiSters and Ladies with Lesions Together) and a group for family, friends and carers of MSers (Living with Lesions). The most popular and successful aspects of LWL have been the regional meets. “Cakes, drinks and lots of laughs are standard issue at our meets. I have been all over the country, from Glasgow to Cardiff, to Southampton and of course my home London. Quite often I am struck by those who attend, who are generally housebound and quite lonely, who come out of their shells and enjoy our social occasions – I’m often told LWL has provided a lifeline for many of my members, and seeing the friendships formed has been super rewarding. One of our members also has our logo tattooed on her forearm – now that’s dedication!”
Tanya is feeling proud and happy to have achieved something which benefits other MSers. The additional benefit is that she now also has somewhere she can turn when she needs support.
“My MS still troubles me, but I have a great medical team and am on medication to prolong my periods of remission. One thing I’ve come to realize through the past few years is that I used to be unsure of how uncertain the future would be. Now I’m sure of how uncertain it is. I don’t know how I will fare in the future, but whilst sun is shining, I shall be making hay. That’s all I can do.”
There is an inherent loneliness in wandering in the wilderness and confusion of the unknown. But we don’t have to do it alone. Whether we connect with others who are facing similar challenges or partner with colleagues to tackle a complex problem, we can be better prepared to face the unknown when we find our way forward together with others.