A message to those newly diagnosed
I saw a post on Bluesky this evening from someone we’ll call FurryOldLobster, someone living through the trauma of diagnosis. They’ve seen their MRI, they know there's trouble coming, and it looks like it may well be MS.
I remember that time well. When the notion of brain lesions, of brain damage, of spinal cord injury, were truly terrifying. I remember the moment my neurologist tested my reflexes, finding a pathological plantar reflex and declaring ‘you see that?!’ and I looked up at him to find he was talking to the student doctor in the corner of the room. To him today was an interesting day at the office, and I was a good teaching case, and to me my life would never be the same again.
I remember that same neurologist telling me it was ‘consistent with MS’. The student doctor in the corner of the room silently watching my reaction. The neurologist taking notes for me, seeing that I had slipped into a vapid dissociative blankness. I remember going to leave and stopping, turning to him, and thanking him for his time. ‘A life changed’, I said. I walked home. I told Caroline. I broke.
I wanted to write to you, FurryOldLobster, to tell you what I would tell myself if I could speak to her, that version of myself at the time of diagnosis. I don’t know exactly what I would say, which is an unhelpful start to a blog post, I know. But maybe to begin with there are no words. There is just the shock, the trauma of the event.. We have all been there, seen the face of fate. We all know how hard what comes next will be.
But we are a kinship. And you are not alone.
I don’t know that it will be ok. For either of us. And if you find ok I don’t know for how long it will be here. I don’t know how long I will be ok either. And I know that MS can be truly barbaric, it can ruin lives, and we will now always be at risk of a truly frightening outcome.
Thanks for coming to my pep talk…
But the danger of it all will become familiar. Fighter pilots, I imagine, totally throw up in their helmets during their first flight, maybe soil themselves, pass out, implode, join the circus, impulse buy a Nissan Micra, I don’t know I’m not a Psychologist. Well I am a Psychologist, but in my defence I’m not a very good Psychologist.
Even fighter pilots become familiar with the risk of flying. And we become familiar with the weirdest stuff. Brain damage. Spinal cord injuries. Walking into walls. Peeing on the kitchen floor. Falling off your wheelchair going too fast downhill. It is scary, really scary, but you become so comfortable with the wildest stuff that you become unfamiliar yourself. You see brain lesions on scans and it’s just a Tuesday. You gauge risks and make decisions, decisions that would cause most people to freeze in their boots, but you will face them with fear and sleepless nights and a good few panic attacks. But you’ll face them.
And you will become brave.
You will find humour, and closeness, and be alive to the present moment in a way that only people close to the edge can. You will find friendship and kinship and love.
I can’t tell you that it’ll be ok. I don’t know that I’ll be ok. I know that there are difficult times ahead. But when I was first diagnosed I hadn’t been tested against these monsters that are now a fixture of my life. Now, I have faced some of them. They are true nightmares but I am still here. Yes I’m injured from our battles, and no I will never be the same again. But I am still here, and the woman that now sits here writing this is absolutely a woman I would have been proud to know I would become.
I don’t know what the future holds for either of us. But from someone 6 years into doing battle with these monsters I can say one thing, the same thing that I would say to my newly diagnosed self. I would look at her, she'd be teary eyed and terrified, and I'd be sat here in my wheelchair, and I’d smile at her with confidence.