Five years, what a surprise
A letter to my MS as we mark a significant anniversary
💒🪩⛓🏥
Dear ball and chain,
It’s our anniversary. Five years since diagnosis day, when we officially tied the knot.
I’ve been reflecting on our relationship. It’s an unceasingly strange one. And kind of mind blowing that we quietly cohabited for around ten years before becoming official. Without ever really knowing we had a thing going on. Like you were a hushed and creepy admirer hanging out in my brain and spinal cord. Waiting.
All that time I splashed in the carefree waters of our unofficial union thinking my options were well and truly open. The joy of family life had arrived after a long and rocky journey. I was living out my long-held desire to learn the guitar. I was trying on new pursuits (counselling training, printmaking) for size with the plan I’d make a career change.
Until you started making a bit of noise. Showing up, wanting my attention. You tripped me up in the street and made me fall. You made my body’s immune defences chew away at the fibres in my central nervous system. My right leg stopped clearing the ground when I walked.
You wanted something formal with both of our names entwined. By the time your bullying started to wear me down, I needed answers too. But honestly, I wasn’t ready for a diagnosis of Multiple Sclerosis. Witnessed and signed in clinic by Dr O Lily, Consultant Neurologist.
So we have the document. And the ceremonial words? In sickness… ‘til death us do part. And that last one stings. Because currently there is no cure.
No divorce on the cards for the foreseeable future.
My God, if I could, I would serve you with those papers now. A fantasy document of irreconcilable differences and unreasonable behaviour (wholly on your part), causing social isolation, damage to friendships and life changing losses, both for me and my family. A catalogue of physical, psychological and emotional abuse.
But with the old incurable vibe you have going on, I can’t do that.
And at risk of sounding like I’m describing some sort of Stockholm Syndrome type scenario, I know you can’t really help being such a mean bastard. You are just doing what comes naturally to a chronic progressive neurological disease. So it’s up to me to work out how I continue to live with you.
And I will.
And I am
It isn’t easy. The ebb and flow of acceptance I experience as I navigate the world with you these days is a far cry from diagnosis day and the months that followed. Or from a few more years in, when a landslide of anxiety and depression brought me down to an all-time low.
I don’t think I’ll ever be ready to say you are welcome in my life. But I am gaining a perspective and fresh experiences I doubt I would have without you. And for that, my mind is blown again. These thoughts that maybe sound like a resolution, are by no means neat, concluded and packaged with a glossy bow. But, for now, I can clearly see what I still have, what I’ve gained as well as what I’ve lost and I am grateful for that.
And I bought myself an MS diagnosis anniversary present. A lovely pair of silver earrings. (Silverware, a modern gift for five years). The earrings have hook fastenings. It will be of no concern to you, but I can’t use tiny back fittings because I have weakness and lack of dexterity in my fingers these days. But don’t worry, I haven’t left you out completely. The gift represents something that has changed because of you, and how I’m overcoming it. I’m looking forward to the treats in the years to come.
And five years in I sometimes feel stronger and richer for the things you’ve taken.
Not yours
Jane
🙏 I hope you don’t feel cheated lovely reader, I normally talk directly to you, not my MS. Next time I plan to tell you my diagnosis story, including why I came to be ‘quietly cohabiting’ with MS for ten years before I was officially diagnosed…
Thank you for reading
Jane 💛
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⭐️ To find out a bit more about me and where the name of the blog came from see the About section ⭐️
An excellent posting, Jane. What we've lost, what we still have and, the most surprising part of it all, what we have gained. All are at the forefront of my thoughts on a daily basis as I fast approach my silver jubilee.
What an anniversary - an object lesson in dealing with a surly and unremittingly grim 'family' member ! Yet, your response also shows how this experience has had a positive side in meeting the challenge of that unwelcome cohabitation. The eloquence of such a characterisation is testament to the strength of your newly found position in life against that limpet's presence. More literary prizes ahead ?