Groundhog Graduation Day
12 Days of Catch-up: 4. Delayed but arrived.
Ok it’s 12 days of catchup but it’s obviously not going to conclude on the Eve of Epiphany as it’s now the day of Epiphany and we aren’t even half way! I really shouldn’t set myself too many personal deadlines, because without the external expectation of another person (like a manager or boss, not mum) and the fear of letting them down (I do also hate to let my mum down), deadlines feel arbitrary. I end up resenting the impulse to set one in the first place and indulging a strangely masochistic self-sabotage where I do any pointless thing but the thing even though I do want to do it. I’m also always exhausted and useless around this time of year, generally needing at least a few mopey bed-and-book days. Usually texts that fit my mood: a bit of misery, some dark humour, maybe an ultimate sense of uplift. Gail Honeyman’s Eleanor Oliphant is Completely Fine is a repeat New-Year read, and this year I opted for Claire McGowan’s This Could Be Us. The back-to-work first week of 2024 has helped me get back into a marginally more productive frame of mind, but I’ve also dallied with this particular post as it raises some insecurities. I’m a self-critical pessimist so when reflecting on the year gone by I tend to expend mental energy recriminating myself for everything I haven’t done, even if I objectively know that I have done some pretty wonderful things.
So those are the excuses. Hope everyone’s decorations are down and we’ll get to day 12 when we get there. Now to one of the wonderful (ish) things… 2023 was - FINALLY - a graduation year.
It’s technically one of my highest achievements, but it rarely feels that way. Achieving my MLitt degree has been the greatest study of procrastination in my life and I hope to never again feel stuck in such stasis - this from the person whose future plans invite the despair of writer’s block. Ha-ha! But as 2023 was the year of official closure - the damn certificate - I can, with effort, enter 2024 looking only ahead.
I completed the degree well over a year ago, but didn’t realise I wouldn’t automatically receive the certificate by post in-absentia, so missed several graduation opportunities before registering. Oops. That characteristic kind of minor idiocy contrasts with a pretty strong academic background (at least on paper), but my education has been tumultuous due to the interplay with my medical history (not so good on paper).
School was never overly stable, interrupted by hospital appointments and admissions. Secondary school absences were dramatic: life-threatening, life-changing events. Pioneering surgery was juxtaposed with ‘who watched 90210 on Friday?’. Not me. I flitted in and out, got by on being bright and never really lagged academically. Just don’t mention ball sports. There were systemic let-downs: a grammar school that proved just how much it valued guaranteed exam results and how little it cared holistically, but also the safety net of hospital schooling (in London anyway) and a council-provided home-tutoring system. It wasn’t always the finest woven of safety nets - an education pared down to the core essentials, plenty of gaps - but it was something. And when it brought me beautiful, erudite, encouraging M, it became everything. She was and remains my teacher, mentor and beloved friend. It’s one of those trite sayings - ‘I’m a better person for knowing you’ - but it’s true. Without that connection, without her wisdom radiating across the dining room table for two hours a week, I’d have achieved less and would be striving for less.
I was exhausted by my school years but excited for university. By now, I was better at breathing but worse at plenty of the rest. There had been an unsuccessful experimental surgery (worth a try) and my physiology was now augmented by a stoma and daily IVs. After a get-well-gap-year of resting and living so I could feel able to enjoy university, I waded through my undergraduate degree becoming a better person (more knowledge, skills, awareness) but still the same old sick one. Freshers year was broken bones. The next was a series of surgeries - orthopaedic, vascular, whatever. The last was about surviving the fallout from a major complication, arguably the worst medical event of my life to date (touch wood, cross everything).
I was strongly averse to all medical advice to just - stop. Take a year out to do nothing but recover. I’d tried that before. I figured that if shit happens regardless, I may as well keep my plans, live through it and utilise what momentum I could muster. It wasn’t exactly the uni experience I envisaged of trying new things and galvanising my neglected social skills. I didn’t contribute to the student paper and get free tickets to shows, discover new talents in student societies or meet the love of my life. But I got through it with a big fat tick of societal approval in writing. Yay. Plus some nice photos and nicer friends.
Terrified to lose momentum and be a bum because I really should start paying off my life-debt to the taxpayer, but knowing I wasn’t equipped for the typical work grind, (can you smell the internalised ableism?) I threw myself into a masters degree. The decision carried an off-the-cuff recklessness: late admission, as far away from my filial and clinical support systems as possible whilst still in the NHS remit, crafting a personalised interdisciplinary degree guaranteed to make my life unnecessarily difficult. Why not. Exciting!
And it was, briefly. But - I didn’t enjoy the course. The expected postgraduate autonomy never materialised. Accustomed to being encouraged to go off piste, off reading list, I felt suffocated by set essay questions and rigid assignments. There were basic academic tests and lectures designed to ensure everyone was on a similar footing, but they felt misplaced and patronising - I don’t need to be tested on silly things like this - but - they clearly think I do. Do I? Oh God, maybe I do. I learned, but I didn’t discover much and became disengaged in a way that felt detrimental. There’s nothing worse than apathy. My emotional confidence plummeted at a time when my body felt like it didn’t belong to me. I couldn’t physically do things that used to be a tether of selfhood and now I was doubting my ideas too. It was crippling. I couldn’t write even when I knew exactly what I wanted to say.
We were advised to rely on peer support, but I was never in one place so never made any friends. Weekly trips to London for hospital appointments exhausted body and bank account. New medication caused menorrhagia and severe hair loss - little embarrassments that felt like the last straw. The short days became depressing. I tried to rally: baked a cake, bought mulled wine and attempted to throw a small flat party. I dangled the enticement of my flatmate’s kittens in a student whatsapp group. Nobody showed. Christmas at home was balm for the soul but also confirmation of a misstep. I’d been determined to prove my capacity for independence but had gone about it in the way most likely to fail. I understand in hindsight that we are all interdependent, and there’s no shame in that. I returned feeling heart-heavy and full of cold but not yet defeated.
Then - heading to a seminar I felt acutely conscious of my trousers moving against the skin of my legs. Abrasive. I had only felt that kind of generalised skin sensitivity once before. I put it to the back of my mind and contributed more than usual to the discussion on R.J. Palacio’s Wonder, but kept thinking how warm it was. In Scotland, in January. I barely endured a short trip to put letters in the postbox and, gripping the letter slot to catch my breath, thought - ah, sepsis. Hello old foe. Infection is a relatively common complication of having a central line, something which is essential to long-term intravenous treatment. Because the line (little plastic tube in a vein, like a very long cannula) sits right inside the entrance to the heart, any bacteria spreads around the system rapidly. I went home, took my temperature, packed a small bag and drove to A&E (accidentally but conveniently nearby) where the receptionist’s opinion of my failure to register with a local GP was writ large beneath her glasses.
The care I received in Scotland was akin to the care I received in England 10+ years ago. People might not have had time, but they made time. They explained fully, listened carefully, heeded my hunch and included me in all important decisions. I’m not saying there’s an absence of that attitude to patient care at home, but a lack of reciprocal care for professionals damages on a human level as well as practical one. I’ve seen how, when inured to inadequate working conditions, medical professionals become less empathetic. There isn’t time or energy to care. Sometimes you only realise how bad something’s become when you’re reminded of how it used to be. That applies to chronic pain, to declining quality of life, to declining public services.
That admission went well, clinically speaking. The line salvage protocol (a good whack with antibiotics for a couple of weeks in the hope of avoiding surgery), always a long-shot, was a success. I, bestowing myself with unrealistic resilience, attempted to plod on with studying and whatnot whilst still an inpatient, between the 4-hourly antibiotic infusions and overnight parenteral feeds. I ambled off to a music event down the road in a continued desperate attempt to have a social life, then let myself back in by finding an obliging smoker by the exit to the maternity wing (don’t dwell on that detail). I swanned off to get a bikini wax ahead of a (rather gnarly) femoral line insertion. I attended extra-curricular evening lectures by a visiting professor. On one memorable occasion I left the university and, about to top up my petrol on my way back to hospital, realised that I didn’t have my card wallet. The one with my bank cards and driving license and student card and library card and pacemaker card and anticoagulation alert card and portacath card and other essential slips of paper. I drove back to the university and, upon finding it near where I’d parked earlier, burst into tears. Sat on a stone cold bench and sobbed. I called mummy who told me to breathe and accept that I wasn’t well and couldn’t do everything.
Life lesson: you aren’t well, therefore you can’t do everything. We like to pretend these truths don’t exist, that every situation and impairment has an accommodation that will make anything possible. But sometimes you run into a wall that doesn’t have a hidden door or even a cat-flap through which to contort yourself, and all you get for your trouble is a squashed nose and a headache.
Outside, the loneliness hit me harder than before. I felt institutionalised. I’d gotten used to the hospital rhythms of changeover, ward round and lights out. The daily 6am wake-ups to the bizarrely nice, chatty and very stabby phlebotomist savagely laddering up an arm to strike lucky. I don’t dislike hospitals. I’ve spent so much time in them that they feel familiar even when wandering the unknown corridors of new labyrinths. I made an appointment with the university’s disability services. The advisor was friendly but at a loss for how to help me ease back in. A limitation of the Social Model of Disability is that it’s a poor fit for impairments that are predominantly medical and prone to flux or exacerbation. There’s no easy fix - no software, tool, architectural or attitudinal change that can mitigate the failings inside my body. Where those solutions do exist, they should never fail to be implemented. I made repeated, desperate calls to mummy and to M, alternatively railing ‘I don’t know, I can’t, I cannot, it’s not good enough’ and crying in silence: extended sessions of sniffling into the receiver that helped me feel less alone. Tolerance of this is one way to know that someone loves you.
I was given deadline extensions, but I mostly needed conversation, reassurance… and time. I promise we will get to the Graduation bit soon…
I needn’t have worried about missing the comforts of the hospital bubble, because that infection, my first in almost 7 years, became the first of three in just five months. For the record, my aseptic technique is very good but sometimes these things seem to just happen. Water appeared to be a factor - consider knowing that a shower might be the thing to carry you off. Tragic prospect. Call me morbid, but I have long since wanted to die in a freak accident unrelated to any medical factor. (The irony!) Anyway - after one particularly fast, awful infection, another perilously close to my groin, four different antibiotics and an arduously long surgery, I was fixed. In body. For a while. I determined that Scotland was out to get me and decided to complete my dissertation from home. I completed all of my taught modules just a little behind schedule and with good grades. The dissertation only needed to be mediocre.
But I don’t like mediocrity. Even when completely burned out, which I was. Exhausted. Empty. The thing with systemic illness is that you don’t necessarily feel better once you’ve been patched up. A bit like post-viral fatigue, you’ve been in a physical fight and are left depleted. If you fail to take the necessary rest - and then the problem repeats itself - twice - well, anything beyond the simple act of being can feel gargantuan. Critical thinking? Give over. I’d known exactly what I wanted to write about before I took a single seminar, but I didn't have the wherewithal to do it justice and so I felt unable to do it at all.
When the pandemic came along, I felt - guiltily - an enormous sense of relief. Here was an excuse, permission, dictate, to not be productive. Who cared about an essay when people were dying? The only to-do list item was to not become one of them. My hair started to grow back - in ringlets. ‘Is your dissertation done yet?’ became a running joke in our ‘bubble’. I am a joke. I pressed flowers and baked challah bread and read very short books. My consultant advised ‘try not to need us’. I did well at that for 2 whole months until I - again - took a shower in May 2020. In the course of those two locked down, torn up pandemic years I contracted sepsis three times. The strange, inverted world of medicine in that time was terrifying and enlightening and beyond the scope for today. In a horribly fascinating way, I was living out the topic of my research interests - advocacy, autonomy, empathy. I made friends among the fellow ‘vulnerable’. Amazing people. We had deep, hilarious, healing conversations.
Once the storm passed, I sought some counselling. I tried something new and received encouragement. Someone said ‘yes’ when I most needed it (Ability Today). I eventually found the distance I needed to sit down and submit the required number of words. It wasn’t exactly how I wanted them to string together, but it was enough. Sometimes good enough has to be good enough. Completion is all. Another lesson I’m still learning. More of M’s wisdom.
***
And so - I purchased made-to-order shoes (I have very small feet) that didn’t arrive in time and custom earrings that did. my dad and sister went on a road trip and met us there. Mum and I flew up the morning of. A crush at the airport and frantic rush to the gate marked as ‘closed’, only to find it was actually not yet open. Delayed, but arrived. I glad-ragged up and went with hard-earned purpose to - I wasn’t sure exactly where. Found the desk at roughly the time the email said, to be told I’d arrived rather late (only appropriate) but took my seat with what felt like ages to spare. It was emotional, a weight lifting. There’s pride over this moment but still a residual slither of shame - that I couldn’t just cope and carry on. Couldn’t keep up with the timeframe.
After, we celebrated. Slept. Got a train to visit my brother and - this is my top tip for events that stir pride but also pain - turned the trip into something else. We visited Scotland’s National Gallery and The Writer’s Museum, created purpose and value beyond the graduation itself. I didn’t want to efface the achievement, but I did want to round off its edges by having other things to focus on and memories to carry forward.
Photo break:
Heading home, we sat at another airport for hours, only to be notified of a flight cancellation at the last minute. The plane became a pumpkin. Bus to another city, three hours in an hotel and a 5am train home. But still, a fitting conclusion - nothing easy or timely. Exhaustion. We made it.
I made it.
Time is so ambiguous. Social media likes to circulate lists of inspirational people who didn’t find their famous passions until later in life, with encouraging ‘your time will come’ messages about how young 20-somethings and 30-somethings (and so on) are. But what if you almost died at the age of 12, and 17, and 21? Can we be passive about the things that matter once we’ve felt just how fragile our own corporeal matter is? We won’t all live long enough for talent or purpose to maybe come and switch on our voice like a wind-up key in a music box. There’s a demanding urgency alongside weary paralysis. Now is all and now is unbearable. ‘I can’t go on, I’ll go on.’
I sometimes need a prod of perspective. I was predicted to never make mainstream school, to never achieve very much according to the typical markers of success. Yet I have. There’s been adversity and obstinance (its and mine) and I stumbled for a while, but completion came in the end - which is really the beginning. Another tick, Master of Letters at last: now I know my ABCs. Time to wield them.
More Anon,
Dot xx
🫶