My dad died in the 1970’s, aged 35, from complications arising from multiple sclerosis. I was four and a half. I don’t think I remember him, as I find it difficult to distinguish real memories from what I have been told.
Over the years, of course I missed my dad, but was it hard to miss what I had never had in my life? I pieced together his MS progression, picking up hints here and there. Back in the 1970’s, MS was often referred to as ‘creeping paralysis’ and was a deadly diagnosis. MRI scans were not actively used until at least the 1980’s, there were no disease modifying drugs and people like my dad were routinely written off and sent home to cope as best they could with what little they had.
I recently heard that my mum had invested her meagre savings into buying a serum from the Eastern-bloc, which would apparently halt, then reverse my dad’s symptoms. She paid a dubious middle man and her money, and the serum, were never seen again.
Now I have MS, confirmed through two MRI’s, showing the progression of my illness in devastating detail. I have my pick of drugs. I have a whole MS team behind me and have been assigned a neurologist and MS nurse. There is physiotherapy, yoga, counselling and an incontinence nurse if I need her plus a whole raft of support groups and forums. Do I feel lucky?
Yes, of course I do. I was fortunate enough to be born into an era of medical expansion and discovery. Hopefully we will have a cure for MS within a decade. Whilst I was going through the diagnostic process – a tedious, frustrating, point-ticking process – I put a photo of my dad on my kitchen windowsill so I could see him every morning. ‘Thanks, dad’, I would say as I put the radio on. Of all the things you could leave me with, you had to pass on this. Cracking legacy. I was angry, furious.
In a strange way though, having MS made me feel much closer to my dad. With every new symptom – and there were many – I would align myself with him. Did he have this, did he have that? I felt as if we could have been kindred spirits. I may have his eyes, his mannerisms, his fearlessness, but that is only what I hear, what I have been told by other people. Now, I have something I know he experienced.
Is that odd? I hope that I can take every opportunity going, as my dad did not have the chance, or lifespan, to do so. If I can somehow honour his memory in this way, then I will do everything I can to do just that.