Tanya Fischer

It was probably inevitable that I would reference books in a blog for the MS Readathon. Hirotada Ototake’s book, ‘No One’s Perfect’ had a profound impact on my perspective on the world, even before I lost trust in my own body. His memoir left a lasting impression.

The greatest influence for me, I think no one would be surprised to hear, was the impact of his teachers. One teacher opted for the ‘no special treatment’ attitude, which meant Ototake was included and participated in all areas of schooling with the same expectations as the other students (as far as he was able). Later, another teacher took the view that if Ototake couldn’t do the same things as the others, they would find an equivalent task that would enable him to contribute meaningfully. Ototake appreciated both approaches at the time they were provided. It’s a powerful representation that, not only do different people need individualised approaches, but the same person, at different points in their life, needs different approaches. 

This is my round-about way of saying that there’s no one ‘right way’ to offer support; not to someone with Multiple Sclerosis (because we’re all so different), and not even to me (because it changes, depending on my capacity, my mood, my…). I realise that’s not especially helpful, if you were hoping to learn the ‘right thing’ to do or say. To be honest, in the moment, I wouldn’t know what to say to me. Humour or something unexpected have usually been successful, helping me to laugh at myself and my situation.

One of my favourite responses, that I remember, was during my flare. A friend was trying to have a conversation with me and I couldn’t remember details that I was aware I should know, I couldn’t focus or comprehend what was being said. When I tried to explain that (because I’m sure it was less than articulate), her response was a smile and, “That’s Ok.” 

Another response that I remember, for very different reasons, was at a conference, years later (I had reached some acceptance with my situation at this stage). Chatting with another participant, we’d made a connection through a mutual colleague. “I hear,” he says, at the same volume we’d conducted the entire discussion, before dropping to a whisper, “you have MS.” 

At the time of my diagnosis (and the relapse that precipitated it), a friend introduced me to The Spoon Theory, created by Christine Miserandino. The spoons were an analogy that Miserandino used to explain to her friend the impact of living with Lupus, her own invisible illness. At a time when my body had betrayed me utterly and unexpectedly, it was a useful way to explain to myself why things were harder, to ease up on myself. It helped me understand what was going on: that washing my hair wasn’t suddenly difficult because it was just ‘washing my hair’ anymore – it was reaching up, it was scrubbing, it was rinsing; it took energy and balance and cognitive effort. And it didn’t hurt that the spoon story was accompanied by a tangible symbol and a delightful pun: Get Well Spoon! It also works as short-hand when I’m trying to explain to someone why I’m struggling. I’ve learned to use the word ‘fatigue’ rather than ‘tired’; because ‘everyone’s tired’ or that’s ‘just age’ or it’s ‘that time of year…’ Truth be told, sometimes it’s hard for me to recognise it: I’ve never been this old before, I don’t know if this is normal.

For me, the ‘right thing’ to do or say depends on the person. Much of the time, being able to laugh at things, make fun of the situation, is my preferred approach. For me, talking about things removes some of the power it holds, the fear associated with it, so I’m happy to answer questions and have conversations about MS. And if I need to cry or a serious talk, I have my people.

These were the words of my critical care nurse when I was hospitalised during my relapse. As someone living with Multiple Sclerosis herself, she understood more than most what we (because it wasn’t just me) were going through. And for me, she became a symbol that life would still be possible. I cannot imagine many jobs as physically, mentally and emotionally demanding as nursing – and she managed both that and MS. I don’t remember much of that time, but that experience gave me a profound appreciation for nurses.

When I received my diagnosis, I was advised to avoid online forums: too much doom and gloom (which is probably unsurprising, and equally unhelpful, given one of the symptoms of MS is a ‘sense of impending danger’). Often, when people learned of my situation, they’d tell me about a friend-of-a-friend who also had MS, but at that stage, I didn’t know anyone else personally. I didn’t have a community.

But.

Every four weeks, I’d go to hospital and sit with other patients who had relapsing-remitting MS. Some of those people had travelled two hours to turn up, early on a Saturday morning. For an hour and a half, we’d sit in day surgery with cannulas in our elbows or hands, receiving our medication through infusion from a nurse who had the training to deliver it. In the beginning, I was too sick to even understand the conversations around me, but I do remember one man in a wheelchair constantly cracking jokes. Later, as I became more confident and familiar with the people around me, I’d ask questions. I learned about different diagnosis journeys, different symptoms, different lives. There were people who worked at universities, in retail, in construction. People who were retired, people who had young children, people barely out of their teens. Men and women…but mostly women (and a weirdly disproportionate number of teachers). Later still, I became the one sharing my own experiences and (for whatever it’s worth) my advice. Over the decade, the people in this group changed: some changed medication, some moved away, some died. Some of those people have become my friends.

Now, my medication is given via two injections. I still travel once a month to the hospital to receive it from the same nurse who was giving the infusions twelve years ago, but I’m in and out within fifteen minutes. It’s convenient, but if I’m lucky enough to run into another person, it’s usually only as we pass by in the hospital corridor; a quick 60 second recap on our past month, and we move on.

That was my MS community and while I miss aspects of it, it happened at a time that was necessary and right for me. Beyond that, I have a broader community, evident here: the people that have taken the time to read this, those who are participating or donating or raising awareness for the MS Readathon. Thank you.