Chester

I had always planned to write about Linkin Park here. It’d be impossible to talk about my recovery without doing so. They’ve been my favourite band since I was about 12 and the Linkin Park Underground is the only fan club I’ve ever been a member of.

My LPU cds
Every year, since 2001, Linkin Park have released a CD of demos/remixes/live performances/unreleased songs to the LPU

Despite knowing that I should write about them, I could never figure out how to approach it. But after the death of Chester Bennington my friend, who writes for inews.com, asked if I’d be interested in writing a piece for them.

I said yes, not really knowing if I could but knowing I’d regret it if I said no. It took me years of talking about doing a blog before I actually did it and contributing an article to another website seemed like quite a big step.

 

There was an 800 word limit and I only had a weekend to write it so the first step was accepting that I couldn’t write everything I wanted to. So after a few attempts I decided to focus on the time we met and I got into some of the medical stuff as well, a huge part of why the band means so much to me.

Chester and us at M&G
Chester, my friend Daniel and myself at Download Festival (Photo: Linkin Park Underground)

After showing drafts to, and seeking advice from, a few friends I finally ended up with this – How Linkin Park helped me through a long-term illness

I’ll no doubt write some more about them here and there when the time comes to write about the “hospital times”, probably not for a little while though.

(Though I do plan to post more regularly than once every 3 months – sorry!)

 

A Proper Introduction

I feel like I should do a proper introduction to this blog. My last post was about an anniversary so it seemed appropriate to post it on the day itself but it does mean that I missed the opportunity to do the “Hello, I’m Malcolm…” intro.

Hello, I’m Malcolm from Scotland. I’m 24 and I suffered two spontaneous cerebellar brain haemorrhages in my teenage years, one near the beginning and one near the end of them. I’m still affected by the aftermath of them everyday but not to the extent of the last 10 years.

My vague plan for this is to write about that time. I have a few milestone events in mind which might be interesting to write about but I’m also going to try and write about some of the day to day things. Things like school and friends, physio, occupational and hydrotherapy and the days when I was unable to do anything at all. I say “try to” because my memory of the “hospital times” after each brain haemorrhage is a bit ‘hit or miss’ but I’ll do my best. I’ve written some things about it before but only ever shown a few people. I sort of enjoyed it and while it was always hard to get started, once I got going it was quite therapeutic.

A big part of the reason I want to do this is because when I was 18 and it happened for the second time, no one really knew what was going on with me. The medical people, I mean. There was (and, as far as I know, still is) nothing to indicate a connection between the two haemorrhages or even what had caused either of them. So rather than dwell on the medical side of things I started to look for first person stories of brain haemorrhage recovery and eventually decided to write my own. After a few years of practice, here we are.

It’s a bitter sweet truth that the parts I can remember in the most detail are the worst and the best. From some of the nastier hospital times to the quiet (on the outside) joy of walking along a street without a walking aid for the first time in years, I plan to write about all of it.

I decided on Malcolm’s Mind Leaks as the title for this because, while being an incredible pun on brain haemorrhages, it means I can write about other things as well. I just don’t know what they’ll be yet.

10 Years

Since the age of 14 there have been two periods of my life when I’ve been able to walk without crutches. One was from between the summer and October of 2010 and the other is from August 2015 to right now. They were both the result of years of effort from myself and the people around me; from physical and occupational therapists to friends and family. A lot of my memories from when I was in hospital are, at best, fuzzy but I do remember what my first physiotherapy was. It was at the Western General Hospital, a couple of weeks before I moved to the Sick Kids. I wasn’t able to leave my hospital bed so the physios came to me and I had to point and rotate my feet for 30 seconds a few times a day (an exercise I still occasionally do). 10 years later, I still have one crutch in a cupboard at home and another in my car just in case but I haven’t had to use either in a while. Which is something I always hoped to be able to say but sometimes felt like a very distant goal. I was recently talking about that with a friend of mine and I used the phrase “that’s almost half my life now”. It’s true but I’ve never thought of it like that before. Exactly 10 years ago today I had my first brain haemorrhage which, after a few months of hospital-craziness, left me somewhere between having to use a wheelchair and a walking frame. I would use either at the time depending on how I felt, which, looking back, was probably one of the first signs that there could be progress. Specifically in my walking but also in my recovery as a whole. It’s that progress that I hope to focus on today.

I tried to write the first part of this without mentioning the term “brain haemorrhage”. It was bound to come up eventually but I wanted to avoid the “When I was 14 I had a brain haemorrhage and then when I was 18 I had another one” intro, that I’ve been writing and saying for so long. I’m 24 now meaning that I’ve been recovering for 10 years. To be quite honest, I’m not sure what to think about that fact. I mean, I’ve definitely been a lot worse than I am at the moment and I imagine that in those moments I’d be thrilled to know I’d be “like this” at 24. That the weekly physiotherapy I was doing, for the vast majority of that decade, actually helped. I could also definitely be better than I am now (and hopefully someday I will be) but I’ve only been getting better since the last “incident”, at 18. However, because the recovery has taken years, I haven’t always noticed the steady improvement unless something huge happened like moving from using two crutches to only needing one, for example. But now, if I look back to May 2007 and consider what happened then and a few years later, I’m pretty happy with where I am today. If you were to watch me walking down the street you’d notice that I wobble and stumble more than the average person my age but when I look back at photos of me in a wheelchair or on crutches, I’ll take it.

I’ve only really been talking about my recovery in terms of walking, so far. Partly because it’s something that’s always been the most visible and immediately obvious to others but also because it’s the area I feel I’ve most improved and it’s nice to focus on positive things (especially at this time of year). It’s certainly the thing I’ve had to work at the most but one thing I found especially useful in my struggle to walk after the second brain haemorrhage was the fact that I had done it before. It took a few years but knowing that I was even capable of recovering to the extent I did was an extremely reassuring place to start from when I came to terms with what had happened. However, the balance problems were far from the only things that the brain haemorrhages left me with. I also take anti-nausea medicine every morning, I have chronic fatigue syndrome, a tremor and slurred speech. All of which have had their own ups and downs over the years but for some reason the crutches have always been my first priority in terms of recovery. I think, the first time at least, it was because I was a self-conscious 14 year old boy trying to get back to how I was before and the crutches were a physical, tangible reminder, both to myself and everyone else, of what had happened. As for the second time, It’s probably unwise for me to have fixated on this (because, as I was often told by nurses and physios, “no two strokes are the same”) but because I’d been through the post-brain-haemorrhage recovery before, I put certain expectations on myself. I had the recovery timeline pre-written in my head and saw it as the same wheelchair to unaided walking journey that I’d already spent years of my life on, so at times I almost treated it as a race with myself. Which, psychologically, probably wasn’t the best motivational tactic I could have chosen since I was always, simultaneously, both winning and losing to myself but I think it’s just human nature to compare two similar, personal experiences. 10 years later, I’d like to think I’m still recovering but if I make half as much progress in the next decade as I have in the last, I’ll be ok with that.