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Beyond the Lab: MND Advocacy on My Terms

Recently I was asked if I was going to partake in research and trials for Motor Neuron Disease and f*ck, did I feel conflicted in how to answer that question.

Modelled behaviour of a sick person in the household was to “keep calm and carry on”. It was this approach to doctoring in general that had my father nursing a smashed elbow for 4 hours before resorting to the hospital. His reluctance was rewarded with several lacerations to the finger in the process (his finger swelled to the size of a Richmond sausage and he decided on brute force for an hour rather than having his wedding ring cut off). We celebrated my sister's birthday in the halls of Inverclyde Royal Hospital having his arm casted and plastered, him returning home as the brave little soldier, symbolic matrimony intact, who hadn’t caused anyone any trouble…tell that to my sister at the time.

I grew up in the wake of America’s legitimized opioid crisis, hot on the heels of thalidomide; and regardless of my grandmother being a very successful pharmacist, I would describe our home as generally doctor-adverse. Even in the circumstances of a local outbreak of e-coli after a Girl Guides camp, my parents were particularly reluctant for my sister and I to become “lab-rats”. Not that that was going to be a problem; my sister and I were immune but carriers of the particular strain so we sailed through while several other children became profoundly sick. I'm sure if there was a greater respect for the medical profession, we probably wouldn't have been in school the day after the outbreak was officially confirmed and two girls ended up in hospital. I can confirm that we weren't in for the rest of the week though. I once had a one centimeter stone stuck firmly in my hand and heading to a&e to remove it wasn't exactly considered a top priority. It was absolutely considered "a nuisance" and "so dramatic". The eventual trip turned out to be necessary. I ended up needing two nurses and 4 stitches.

See, at least from my recollection, physical injury was occasionally taken seriously…but the invisible? That was always a cause for suspicion. And the treatment? Even more so. Clear liquids and ambiguous pills; forget about it. If it wasn’t pink, strawberry flavoured paracetamol or banana laced penicillin? It wasn’t going in without sincere prejudice! And don't get me started on the misgivings around anything to treat mental health conditions! Prozac equalled persona non grata.

I wouldn’t it established a full on phobia of hospitals; but I would say that I inherited a sense of tedium to the point of agitation. This has often been read as generalized anxiety and the malingering that was ever present on my medical notes until my medical problems gained their proverbial capital P from some consultant or other.

I have to challenge the illusion that my being in the presence of a doctor is some gross inconvenience. At the same time, I battle the side-eye as they perceive the long pauses, apprehension to meet their eye, or my nonchalant attitude to worrying symptoms as reluctance to report accurately or to accept treatment.

The truth is very simple; I like my stuff, and I like to be with my stuff. Even for a 48-hour stint in probably one of the safest places one can be when feeling profoundly unwell, knowing full well that all my belongings and my people are safe and sound elsewhere -shudder. I still feel extremely unsafe because I’m not at liberty to leave without causing some sort of paperwork or concern simply to be back in familiar environment. I'm no use to anyone being in a hospital. I'm at risk of being "a nuisance". Because I understand these particular anxieties better, it makes attending routine appointments easier.

I admire those who step up to the plate to facilitate the needles-n-tubes aspect of research; they bravely move into the hospital space with a stronger sense of pride and security than I do. They wade into the fray of testing with a grace I currently do not possess. Regular EMGs, MRIs, Lumbar Punctures, Respiratory Testing, alongside any side-effects and anxieties about being in a placebo group or not. Combine that with the dedication to cost, travel, personal time. The people who take to trials so valuable on the path to discovering a cure are unimaginably valiant.

Comparison is the thief of joy on this occasion because, when a person asked me if this was a route I was taking, I felt like a coward for saying “no”.

I delivered some platitude about how Medical Trials aren’t really “a thing” in the United Kingdom. And this is true. The Guardian reported that the number of medical trials taking place in the UK fell by 41% between 2017-2021. And, despite the furor around Covid, this didn’t pick up the slack. Covid trials, in their way, actually impaired uptake for other vital clinical trials in Cancer, MND and other impactful diseases causing a plateau. The thing I neglected to point out was that the main reason for this was “approval” rate for patients.

But what is true for me is “patient reluctance”. I don’t want to be that nuisance “lab-rat” confined to testing in places I don’t want to be, and limited in what I could or could not do for another few years. Not right now!

It took a lot of research and soul-searching to realised that I didn’t have to be that kind of warrior right now. That there are things I can do that are just as important as donating my brain and nervous system to the medical system.

I’ve been a statistic a few times in my life. I was diagnosed with BPD in my teens and made two unalivement attempts, I have been subject to a serious sexual assault, I was the victim of Domestic Violence, and now I have a Motor Neuron Disease. And I’m tired. I’ve felt the pressure to advocate so many times in all the possible ways for terrible, awful things to become moments of growth and inspiration. But this one made me feel too naked, too vulnerable, too exhausted to take on the usual medical anxiety.

It was a relief to find that I wasn’t the only one who didn’t want to be prodded and poked by doctors after spending the last few years of doing just that.

People have podcasts about their individual experiences, their on-going jobs, their roles within the community inside and outside of MND. Even just reporting on life on-going is advocacy for any specific cause. Watching people living is something I consider profoundly beautiful and I draw so much inspiration, strength and encouragement from it.

I was reassured to find that there is absolutely no pressure in the community to experience more personal discomfort in this ordeal in order to be proactive in finding treatments and raising awareness. And it certainly didn’t make me the biblical coward I was branding myself as.

Pip sits in her wheelchair in blue sports gear, sparkly leggings, trainers and her grippy fingerless gloves throwing a peace sign ready to take on 10km in her wheelchair!
Fundraiser ready!

When I left my profession in Early Childhood Education, I always insisted that I didn’t want to be front-line for anything again. It was for a prestigious position for special and specific kind of heroine that simply wasn’t me. But wanting to take a back-seat to the full-on battle doesn’t strip people of their achievements, their individual success, their own brand of bravery.

Donating my body after death, fundraising, completing questionnaires or surveys on my condition, looking for adaptive tools to preserve their individual independence with a progressive disease. Bravely seeking challenges and suggesting solutions to implement; it’s own kind of crusade that supports the war on MND.

And I’m stepping up…proverbially, of course. It’s a day of fatigue right now because I just completed my first fundraiser for MND Association! You can still give and your support can make a difference. Every contribution fuels the fight against MND. Take a look here

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