Today marks 9 years since contracting viral meningitis. I was 14 years old.
Almost a decade later, I still mourn for what I lost that day, but it’s also an opportunity to reflect on how far I’ve come in that time.
You can watch my latest vlog about it here.
As we approached the end of the decade, the 10 Year Challenge began to circulate on social media. On all platforms people were sharing pictures of themselves from the start of 2010, & comparing them to current pictures of themselves. I was tempted to share a social media post showing my transformation, but as I started to put together the tweet, I realised it could easily be taken out of context. So, I decided to make a blog post instead.
The reason for my concern is this; 10 years ago, I wasn’t sick.
If I had posted that tweet, it wouldn’t have taken long for it to be turned into a pity-post, further contributing to the ableism disabled people face on social media & on the street. Worse still, the possibility of it becoming “inspiration porn” was not remote either. The truth of the matter is that the change that occurred over the past decade is a lot more complex than just becoming sick.
10 years ago, I looked like this:
I picked these photos primarily because they show me in engaging in some very physical activities; crossing the river via stepping stones outside Bolton Abbey, & hiking up to Bronte Bridge & Top Withins, the setting for the classic book Wuthering Heights. Another factor was trying to find images where I didn’t look like a complete dork. I may have failed on that count.
Anyway, here’s what I look like now:
The change is obvious; not only do I now have boobs, but I also have a wheelchair. Without full explanation, it would be all too easy to misinterpret the meaning of my post. If you’d shown me the current photos then, I would have freaked out big time.
When I first contracted meningitis, & then when I went on to develop M.E., it honestly felt like my life was falling apart. Nothing was certain anymore; my education, my friendships, my potential career, it was all gone or so I thought. Had you shown me the current photos then too, it could have only made things worse.
However, the physical transformation shaped & was eventually overshadowed by my personal transformation, & that is something no photograph can show. Adapting to life with a disability meant that I developed skills & emotional processing I could never have unlocked without it, which much like a vampire will never show up on camera. Posting those images straight to social media could not capture the most important part of the change.
My story is not meant to evoke pity, nor is it meant to be inspirational. What I want it to show is how adaptable even a naïve & inexperienced kid can be. Most people would have adapted to disability in much the same way I have, it’s just that never having become disabled they don’t know that. 10 years ago I would have said the same had someone asked me about how I would react to becoming disabled. While I want to show that seemingly impassable obstacles can be overcome, I also want to highlight that it’s still OK to feel frustrated by them too.
I don’t want to be pitied because of my transformation, although a little empathy would go a long way instead. I don’t want to be heralded as some kind of hero for surviving it either; we all have our own hardships to face, it’s just that mine aren’t as easily hidden as others (not that we should have to hide them at all). 10 years has changed an awful lot about me & my circumstances, but you’d be hard-pressed not to find someone who hadn’t undergone some significant changes in the space of a decade.
What I want to show is that the unexpected will come out of nowhere (I mean, otherwise it would be expected), & that all you can do is adapt. Survive. Overcome. This is what I did; no more, no less. Nor can I predict with much certainty what the coming decade will throw at me, but I’m not too worried about it either. I know I’m tougher than I look & I’m adaptable. Who knows what transformations lie ahead?
The first vlog of 2020 is available to watch here:
Enjoy!
If you haven’t already, please do like & subscribe to my channel for even more content.
Happy new year! I hope you enjoyed my yearly recap last Sunday, & I definitely hope you’ll enjoy the first full blog post of the decade this coming Sunday, when I share my take on the 10 Year Challenge.
It’s been quite a year.
In the middle of January, mere weeks after getting married, my husband & I began the search for a new home. Our current apartment was falling into disrepair at an alarming rate thanks to a disinterested landlord & unhelpful letting agent. It was almost impossible to keep warm, & we were both heartily sick of sticking our hands down the back of the toilet to reset the cistern after every flush. Almost immediately on our search we found a block of smart-looking apartments on the edge of the city centre, nestled behind the shops & arena. We booked to view an apartment which was cancelled at the last second, so booked to view another similar apartment, & despite making an appointment to pay the deposit were told that someone had snapped that one up at the last second too. Although it didn’t feel like it at the time, this was a good thing.
I viewed the third apartment alone as I had more lenient annual leave arrangements than Jarred. The letting agent surprised me with the higher rent, but once inside the apartment it was clear why. It was more spacious, easily able to accommodate the wheelchair in all rooms, & had large windows overlooking the little garden outside. Of course, the office of the letting agent was inaccessible, so much to their displeasure we were forced to do the paperwork in the apartment block’s reception. The agent bumped up the rent even more much to my displeasure, & repeatedly reminded me how much easier it would be if this could be done in the office. There were queries over their guarantor policy & my ID, & the agent added an extra month’s rent to the tenancy agreement, but eventually after a stressful couple of days, it was all finalised.
Now that we knew we would have a home once our current tenancy arrangement ended, we could move onto more pleasant things; arranging the honeymoon. We planned a week in London around a wrestling show, of all things; after all, Jarred did propose at such a show. At the start of March we hopped on a coach down to London, staying in a hotel near King’s Cross in the north of the city, & enjoying a range of activities including the London Eye & a matinee show of Phantom of the Opera (Part 1 & Part 2).
All too soon we were travelling North again, & a couple of days & several loads of washing later, I returned to work. I was approaching six months in my job by this point, & my probationary period was up for review. I was disheartened to learn that my probation would be extended for a further three months, although my line manager was as kind & supportive as ever. However, it did seem that my difficulties in the job mainly stemmed from the fact that it was a step above entry-level, & I essentially had to learn everything the entry-level role should have taught me, & then learn my actual role on top of that.
After the Easter break came a succession of birthdays; a close friend, my dad, my father-in-law, my brother-in-law, & then me. A couple of those birthdays were milestone one’s, although I think if I disclosed which milestones I would be disowned, & so my brother-in-law came up on a bank holiday weekend to stay with us. I had booked the rest of the week off work, & I spent most of that playing my birthday present; the much-underrated Rage 2.
In amongst all of the birthdays was a trip to the gynaecology department at the local hospital (yay?). I wrote about that saga rather recently (Part 1, Part 2, & Part 3) so won’t go into the details here, but I was pleasantly surprised at how well that appointment went. It was after that appointment that my journey towards getting an answer about my gynaecological issues truly began.
June was a stressful month as we prepared to move house, & I also undertook a trip across the Pennines to Manchester, for an ironically inaccessible conference on disability. The end result was essentially having to pack the entire apartment on my own in a weekend, which also turned out to be one of the hottest weekends of the summer. To make matters more awkward, our landlord was not too happy that I had disclosed the extremely long list of broken things to the letting agents they were working with, & kept trying to charge us for things that had been in a sorry state long before we moved in two years before, but after obtaining some legal advice they were forced to back down. Still, July 1st, the day we got the keys for our new apartment, could not come fast enough.
The day we moved was bright & sunny, filling the apartment with natural light as we unpacked the essentials. Both of us had booked the week off work, & with the help of my bridesmaid & her partner, we were settled within that week. We were all pleasantly surprised at just how smoothly everything had gone!
The day we moved house was also the day I passed my probation at work, earning my place working alongside a characterful team of like-minded individuals. I’m not sure I had ever felt so positive & confident before; I had a gorgeous home I could be proud of, a brilliant job I could be proud of, & a gorgeous husband I could be proud of (for the most part, anyway). For about six weeks I was rolling on cloud number nine, even going so far as getting a new tattoo, & then I had to return to the hospital.
This appointment was harder. The temporary treatment I had been on had already worn off, & I had to work hard to convince the doctor that the best way forward for me at this point was diagnostic surgery. Fortunately, the man saw reason once I had explained the situation, & I was told to expect a letter in the post. Sure enough, a few days later I had confirmation; on 24th September I would undergo a diagnostic laparoscopy.
I’m lucky to have an understanding & considerate employer, who allowed me to take the necessary time off work for the surgery & recovery without needing to use any of my annual leave. As the date got closer I got increasingly more nervous, not necessarily because of what they would find, but what they wouldn’t. Above all else I needed the validation that my symptoms were not all in my head, as had been suggested countless times before.
Unsurprisingly the surgery did find something, that something being the endometriosis I had been telling doctors I had for years. The next two weeks post-operation were miserable. I was predominantly alone & housebound, in a lot of pain & still without treatment despite now having a diagnosis. My stitches, which as it transpired had been applied incorrectly, became infected. Then my GP was less than helpful, but fortunately I had managed to wrangle a telephone appointment with the gynaecologist for the end of November.
In mid-October I returned to work, now having been employed there for over a year. Given the large pile of paperwork waiting for me, & the even larger bouquet of flowers, it would appear I had been missed. It took a couple of weeks, but by the start of November, the majority of the backlog of work had been cleared. My line manager also had a new daughter.
As our first wedding anniversary approached, Jarred & I decided to book a mini-break in York for late November. York is always spectacular as Christmas approaches, & considering the nature of the historical buildings littered throughout the city centre, is surprisingly accessible. You can read about my trip here: Part 1 & Part 2.
Upon my return to Leeds I had my telephone appointment with the gynaecologist. Fortunately, he was significantly more supportive than my GP, & proposed that I go back on the only treatment that had proved effective without miserable side effects in the past. Unfortunately, that did involve being injected in the stomach every few months, but it meant relief for the foreseeable future.
Now we have Christmas in our new apartment to look forward to, although of course when this is published, both Christmas & our first wedding anniversary will have passed us by.
As for the coming year, we know we have a home for well into 2021, so can relax on that front. My career in medical research could take several paths, & I look forward to finding where I end up. I don’t tend to plan as something will always come along to scupper plans; plans cannot be scuppered if they do not exist. I know I say this almost every year, but to have a less eventful year would be a pleasant relief; we will just have to wait & see.
