I fundraised for my MRI. I guess you already know the outcome. It’s booked for January 24.
I hoped that I’d be able to fundraise enough to book the procedure. I thought it might take a few weeks, but I knew from the many voices urging me to do it that I had a lot of support. So, as difficult as it was for me to ask for help, I bit the bullet.
I did not expect to reach the MRI goal in four hours.
I did not expect to exceed it by more than double what I need.
I mean, that’s just – what are the words for that? The generosity is incredible. I was in shock for a few days.
It took me thinking about my other friends who live in pain to get my head around it. I thought about their suffering, and how much I wish I could do something, anything, to alleviate it in even in a tiny way. I’m not saying that was the reason people supported me – I’m sure there’s many reasons – but this’d be my reason to do the same.
Let’s be real for a second. (TW mental health).
Here’s a bit from How Does It Hurt?, describing the impact of chronic pain.
I know that many of you will understand this, because you’ve experienced it.
The reality is as Stephanie de Montalk describes. A “radical assault on language and communication” – which strikes at the heart of who I am. I do my absolute best to share my experience in the most authentic way I can. But this is what Stephanie has spent more than a decade researching. When someone asks me “How does it hurt?” – I rarely have words that would even get close to the answer.
In her 2005 essay ‘Pain’ Stephanie writes “It dragged and burned: a cat at the curtains, a coal smouldering; it needled like crushed glass; it radiated out and pressed down…”
That’s just the beginning.
This day last year, I was admitted to Respite after it became apparent that I was a danger to myself. I hadn’t yet been diagnosed with Ankylosing Spondylitis. All I knew was the pain. All I knew was that I had not the words, energy, or caring left to be able to describe it, name it, fight it.
I spent several days in the country, and returned stronger and with more hope.
A year later, I can say that strength and hope is stronger than ever. Having a diagnosis helps. But I couldn’t have done much with that diagnosis without you all. Your unrelenting support, so acutely expressed by the fundraising response, has been and will continue to be utterly fundamental to my ability to recover and fight.
As you know, I was looking at waiting at least another four-five months for the MRI. I’ve already been in pain for two years. I am at the end of the burning rope that is my spine.
The MRI isn’t a solution in itself – but if I get the “right” result – ie, it shows the inflammation pattern they expect to find – I could get access to a TNF inhibitor. These drugs are dangerous, expensive, difficult to access – and work for so many people.
My scan is booked for 24 January.
Thank you. Thank you to everyone who enabled this. The sense of relief and hope I have, knowing that it is on my horizon… Again, indescribable. In the face of pain that gnaws, claws, clamps, drags, and never gives me a moment to forget its presence and impact, it is utterly vital I can see progress. It is utterly vital that I have milestones to mark and look forward to. You’re doing that for me.
The additional money will be used for doctor and specialist visits, medication and supplements, dietary needs, swimming, massage therapy, yoga, maintenance of my TENs machine, and possibly a new cane that doesn’t come from the $2 shop. I would also quite like to make a donation to the Red Cross in Nelson, as they drive me to all my medical appointments and this is such a hugely helpful service, for me and many others.
Thank you, again. I honestly have no other words.