One who needed healing from the glove of Padre Pio and the seventh son of a seventh son in a rural town somewhere (my mother's idea not mine). I was a young adult returning to the cradle to be coddled. I am being a bit overly self-critical here of my former self but with the benefit of hindsight I can see how MS greatly affected my identity and sense of self.
I remember standing on a busy bus and being hit by the fact that my fellow passengers see me as a young healthy twenty-something year old. If they only knew what I had, they'd surely offer me a seat. Talk about being self-obsessed!
Having MS used to feel like a dirty secret. I still hate the phrase Multiple Sclerosis. It's too much of a mouthful. I used to carry this secret like a burden that I strangely felt compelled to share with new people as to not would be dishonest. It would be like not showing my true self but pretending to be someone else. How warped! I would then worry about their reaction and not making them feel awkward or uncomfortable. What if they didn't know what to say? What if I ruined their lunch with my heavy revelation? Wasn't it much easier to pretend to be 'normal'? Until my hand shook lifting a cup. Would they then think I'd been drinking?
MS is mostly diagnosed in 20 or 30 something year old young adults. This is typically a time when we are discovering our likes, dislikes, trying new experiences, new identities. I got hit with diagnosis several months after moving to a new city (Dublin) to start a new job. I was experimenting with a new life and then I got large taste of reality. My first instinct was to go back to the family home for consolation. Working for a large company, I was able to get a transfer. It felt a lot like going backwards independence-wise as well as aging a few decades. A strange combination.
My focus became more about security and fear of the future rather than an exploration of possibilities. The deluded sense of youthful invincibility had been stripped away. Possibilities had shrunk (in my head at least). Of all the symptoms, fatigue was the one that hit hardest and still does. For me, this symptom impacted my identity the most. Who am I if I don't have the energy to do what I used to before? I have to make sacrifices with my time and pace myself. Sounds easy on paper, not so in reality. I can't plan for the future with the same confidence?
I remember my first meeting with other people with MS for tea, massage and reflexology on a dark winter night. I was the youngest by many decades. They all seemed to be using wheelchairs. I wanted to run out in shock and horror. I felt like I'd joined the wrong club.
A couple of years later at a national conference in Kilkenny I met people of all ages. Some in wheelchairs, some with canes. Many without either. I realised that people with MS are not some amorphous blob; they are individuals, people as varied as any other group of people both in identities and types of symptoms.
Identity is fluid and is something that changes throughout our life. When I am having a rough time with MS I probably am more aware of it and identify with it but mostly not. Nowadays, MS is just something I have to live with. It's not me. It may have hindered and affected me in lots of ways but that is all it is. A major hindrance. Life goes on despite it. We are more than a diagnosis. We are plenty of other things.
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