For someone who’d had a parent with multiple sclerosis, I knew surprisingly little about the illness.
My father died in 1978, aged 35, from complications due to secondary progressive MS. Back then, MS was spoken about in hushed terms, especially in front of small children like me. It was a hopeless illness, one which offered no treatment beyond being sent home with a walking stick.
I was wholly unprepared to be diagnosed with MS in 2012; my blueprint was a montage of flashbacks of my father, cobbled together as only someone who lost him at four-years-old can; wheelchair, depression and despair. MS was vicious and cruel.
Now I am the parent living with MS and thankfully, times have changed. We have a myriad of treatment options, we have MS nurses and we have more understanding of how MS can affect every area of our lives. I am bringing up my son as best I can and to him, there is no discernible change, beyond my fatigue and momentary problems with word-finding, which we can both laugh about.
So what was my dad like? He was cheeky, curious and adventurous. I may have ‘inherited’ MS, but I hope I have also grown up with the best of him. Had his life not been cut short by MS, I am sure he would have gone on to achieve remarkable feats.
In a strange way, our shared diagnosis has also brought me closer to him. For once, I know exactly what he felt like. We share the same frustrations, although his MS developed far more quickly than mine. Our nerve pain, our tripping, our brain fog – I know for a fact we both went through it.
However, I miss him dreadfully. If there was one person I needed the most during the pre-diagnosis stage of Limboland, it was him. Even before that, his was the empty chair at my wedding, the birth of my son and my degree ceremony.
During my darkest days (and there were many), I was always aware that I was fortunate. My father didn’t have the chance to live life to his full potential. I do. The Alemtuzumab treatment I had gave me my life back and gave my son his mother back.
There is no point thinking, ‘if only …’ His legacy to me is to pick myself up, forge a new path and live a new reality – one in which MS is in my life but is not its entirety.
I hope I can make my father proud and I hope I continue to make my son proud. If I succeed, MS has lost.
Barbara A. Stensland is currently enrolled on an MA Creative writing course at Cardiff Metropolitan University, UK. She won a highly commended MS Digital Media of the Year 2013 award for her blog about living with multiple sclerosis, www.stumblinginflats.com. She has previously worked as a translator, homeopath and newspaper advertising executive. In her spare time, she bakes a lot of cakes and tries to read all the books on the Booker Prize Short-List.