I've been quiet lately. Some of you may be aware that, recently, there's been a headline in the news that has struck a bit of a chord in my family: a possible cure for multiple sclerosis. They think they might have it.
We've all been walking around in a bit of a daze. We had all written off the possibility of a cure, and at best only expected to see greater handling, but so far pretty much everything my mum has to take to manage MS just leaves more side effects. And my mum is in so bad a state that we figured that, if they did eventually find something, it wouldn't be too considerable and certainly wouldn't affect her enough, though would likely be great for people more recently diagnosed and not as far gone.
But...we might just be wrong.
It was discovered by accident, as many things are. What is it? Chemotherapy. A particularly unlucky individual was diagnosed with MS, and later with cancer. They underwent chemo to try to treat the cancer - and their MS started to clear up, too.
Multiple sclerosis is a condition wherein the immune system starts to attack the body's tissue and damage the myelin sheaths that protect nerve fibres. Macrophages - 'scavenger' cells - remove the damaged myelin and leave the nerve fibres exposed which interferes with the conduction of impulses, resulting in interrupted signals to and from the brain. This affects speech, vision, movement - pretty much everything.
Chemotherapy completely shuts down the immune system and leaves the body to rebuild it with their own cells and, in trials so far, has led to the ability to walk again. Trials are running for the next 2-3 years to find the extent that this can help, but people who have become wheelchair-bound by their MS, unable to feed themselves and need acute care throughout the day, have been able to regain motor skills. Muscles need to be strengthened and rebuilt in order to be able to walk again - years in a wheelchair alone makes it difficult to walk again, but with exercise and therapy, people have been learning to walk and move around again.
My dad is usually very sceptical about these things, but from what he's read and watched, he's actually hopeful. I myself didn't have the heart to look into it. I didn't want to get my hopes up because my main concern isn't her body, it's her mind. She doesn't speak anymore, and we don't know if it's the MS or a decision she has made. She laughs a lot, but seems to have the attitude in that sense of a young child. She doesn't always remember who we are, either, even though she sees us every single day. We don't know if this is the MS - which is known to cause euphoria in some cases, and does affect speech - or if there's something else going on. But my concern is: what if she regains her motor skills, but not her mind. She'd be like a 5 year old that can reach the top shelf.
My mind has been running riot. Sometimes full of hopeful things like finally getting my mum back, something I never dared think of, and sometimes it's negative, such as thinking all it will do is backpeddle 6 or 7 years to her either being able to move but not knowing quite what she was doing, or further to when she was able to move but was depressed all the time.
And what if she regains everything? Will she be happy and embrace life? Or will she live in terror that it might return? But, if she was living in terror, would that fuel her to embrace life anyway, or would it paralyse her? I've had the unfortunate experience of discovering that I would be paralysed by fear, and I hope she wouldn't succumb to that.
And this is all assuming that it's a true cure, rather than a temporary solution that will wear down again, and not accompanied by its own side-effects, and then there's also the general fact of how awful chemotherapy itself is.
So, as you can guess, we're all in a bit of a daze. We're cautiously hopeful. But she's not in the trials, and, assuming they're successful, it won't become available for 2-3 years, at least.
I've not felt such hope in all my life, but I'm also aware I could easily be setting myself up for disappointment.
But...I just can't help wondering. My dad's level-headed but he keeps talking about what-ifs. Going on holiday to Devon again, as a family. Dad doing DIY work and her telling him he's done it wrong. Mum seeing something she likes and buying 2 of them in case the first breaks, and then never using either of them. Arguing with her.
At this point, even the rubbish parts of family life I yearn for.
And I could start my life with Seeg for real. Get a job, move out, grow up. I don't resent my situation, being a full-time carer for her. I don't resent it in the slightest, because it's our lot in life, and I've made the best of it. If not for this, I'd never have the opportunity to have a little jewellery shop, nor would I have the chance to throw myself into my writing as deeply as I do. I might be embarrassed about still living with my parents, but it's not because I'm lazy or dependant, and that at least lets me stand a little taller. I'm doing my bit as a daughter, looking after my mum when she needs me, and giving my dad peace of mind so he can work full time to pay for the equipment we need to look after her.
Which then brings to mind one last thought: we had a wheelchair lift installed last year. That will be one big hole for my dad to fill in...