2016 – The Year of Rehabilitation, Writing and Weak Tea

This year has been about getting functional, reclaiming the parts of my life that were salvageable, and jumping into the last of the three childhood dream jobs I still hadn’t done, video game script writing.

The year 2016 started with me still in Turku in a trauma ward, where I finished editing the first short story of the year by poking an iPad with a stylus. I wanted to get that out of the way before it was the time for me to be transferred to Tampere and the rehabilitation unit, which took place on January 6th. The spinal injury rehabilitation takes place in three central sites around Finland, instead of being distributed piecemeal here and there. This concentration of expertise has made these centers perhaps even the best in the world, so I’d be in good hands.

NOTE: I kept a journal of sorts of things happening to me on Facbook, and I’ve included some of those entries in photo captions.

I wasn’t sure what to expect of the rehabilitation, but never would have I guessed that it turned out to be relaxing and even fun. So, my hospital odyssey started with a week and a change in observation in the intensive care, followed by a month in the trauma ward. There was a bit of physiotherapy and occupational therapy, but I spent most of my time on my back in a bed or sitting in a very heavy wheelchair which I couldn’t even imagine moving. In the neurological rehabilitation unit they don’t talk about patients, but rehabilitatees, and the job started from day one from the most basic things – like shitting over a toilet. After you’ve done your business in a bed for a month, I can’t overstate how good that felt. I could have used a smoke afterwards.

My average day started at 8-ish, when I was woken up for a breakfast and to be catheterized and taken to the toilet (I peed and still pee by sticking some 30-40cm of narrow hose up in my penis and into my bladder). After that there was either physiotherapy or occupational therapy or both. Then the lunch, some more physiotherapy, some rest and recuperation and an evening spent in the bed reading scifi and horror and eating candy with zero guilt. I can’t remember the last time in my life when I could do that, and how fucked up is it that I needed to break my neck to get that. Then it was the time to pop the sleeping pills and to watch the stars crawl across the sky over the morgue next door until falling asleep.

As a great bonus I landed a private isolation room, I’m not sure if it was by accident or to curb a potential MRSA cross infection across hospitals (or both). Whatever it was, it did wonders for my sanity. No blaring TV, no people around me every second of the day, some actual peace and quiet.

The nurses, therapists and doctors on the ward were quite laid back and fun. I had a daily program of exercise which someone else had thought out. I didn’t have to take care of anything but my recuperation, and I was progressing fast. Even with nuisances like a nasty UTI, which kept me in diapers for a few weeks, especially the first half of the rehabilitation felt almost like a holiday.

Restoring Functionality

One thing that made the rehabilitation process so satisfying was the fact that I started getting results fast. I’m quite proactive in trying new stuff, and the physiotherapists picked up on that, and pulled me at and over my comfort zone in a good way. Case in point, they made me stand up the second day in the ward. I had just gotten used to sitting up, and my blood pressure was still around 90/50 or something like that, which meant I was still being habituated to being upright. I was supposed to be training sitting upright unassisted, but I was apparently doing so well they went “Looks like you want to stand up! Allez-oop!” And there I was, upright like a boiled noodle doing Macarena, for glorious 30 seconds or so. Two weeks in I took my first three shuffling steps, the next day 10 meters, 30 meters and so on – albeit with two wires on a ceiling runner attached to a harness I was wearing, using a lean-on walker, and with two physiotherapists assisting me.

I also finally got rid of my neck brace, which is a massively annoying and uncomfortable thing. I slowly went from getting up from the bed with a hoist to using a sliding board, to using my arms, and then to using my arms and legs.

There was slight improvement with my fingers, but much slower than I had hoped. All in all the left side of my body seemed to start working faster and better than my right side. My left leg was somewhat functional already in Turku, but my right leg was slower to catch up. In Turku, when I was running a fever that oscillated from 35C to 39+C pretty chaotically, at one point when I was shivering uncontrollably of cold, my right leg started to function a bit, but when I stopped shivering, it went limp again. My right arm was pretty strong from the get go, but the fingers were useless. On the left side I started being able to do a pincer grip with my thumb and index finger, but the tricep was weak. I mostly concentrated on learning how to function with fingers that were like bunches of semi-flaccid dicks, and it’s surprising the things you can do.

One fun thing which I realized already in the ICU and grew to appreciate even more during the year: diving is a really handy hobby for getting habituated with living with quadriplegia. In ICU I had several IV shunts here and there, and I was surrounded with hoses and gear, having to function around them. This wasn’t too different from a work dive where you have surface tethers, tools and hoses all around you, getting on your face, etc. Learning to do stuff with stiff and numb fingers? No problem after doing ice dives with wet gloves and having to tie knots & operate your gear with totally numb fingers. Walking while paralyzed? Feels a whole lot like walking with double tanks and fins on. Didn’t see all that coming.

My home office, which was the only upside of having to go to the shared room. That plastic stuff on the corner of the table is for breathing exercises, since I was still running on 60% lung capacity.

It wasn’t all just rewarding exercise and relaxing nerdy evenings reading books and watching scifi shows on an iPad. I mentioned in the last year’s entry that unlike my legs, my hands weren’t devoid of sensation, and I got to enjoy nerve pains. For the first month they had that hard to bear pins and needles thing you get when you sleep on your arm so the hand is totally numb, and that numbness is just about to go away. Slowly it started feeling like my fingers were just numb from cold, which was kind of okay, but unfortunately that turned into feeling like my fingers were in ice water. That is absolutely not pleasant, not to mention the occasional feeling of being poked on the index finger with a sewing needle every time your heart beats. I asked the doctor to up my Lyrica, which went to a whopping 600mg at first, but it got lowered to 525mg because of the side effects, but more about that later.

The other thing was a thankfully transient involuntary movement in my toes. When I tried to sleep, my big toe started twitching up once or twice every 8-10. The first hour was bearable and felt a bit ridiculous, but in the end of the hour two it had me cursing out aloud while shaking my bed by the sides. Nevertheless, with just the fingers and this, I got off pretty easy compared to many.

One fun thing was that there was a steady trickle of high quality reading material about spinal cord injuries and how they affect the body and the mind, ranging from the ever so important peeing and pooing to skin care and pressure wounds, and sexuality. (Oh, if you find yourself in a situation where you feel an insufficient amount of people are interested in your erections, try breaking your neck, that’ll raise the interest!) There was also the psychological side of the issue, and that pamphlet had me scratching my head. There were these stages of grieving, which wasn’t that cliche rigmarole of anger, acceptance etc. but something else – but it felt totally alien to what I was going through. I felt I had sort of come to the “fuck, I’m disabled then” conclusion by the time I was ferried to the ICU, I didn’t have the PTSD thing of mulling over what had happened time and time again, etc. I tried to be very wary of not thinking of myself as a special snowflake: I knew I was still on a “honeymoon” before the real life started insinuating itself back to my world, and that the everyday routine would probably hit me on the face like a used diaper. Nevertheless, I didn’t find much familiar in those descriptions. I’ve never been so thankful of a mind that veers much more towards mania than towards depression, since I think that let me skip a few steps there (combined with my science geek’s knowledge of anatomy that made me understand what had happened).

Whenever there’s any talk about public healthcare, the new is rife with stories about rude and lazy nurses. I’ve got to say that during this year I’ve been treated by at least 50-70 healthcare professionals, and what has surprised me is how competent and empathic everybody has been. All this time I met only one nurse who appeared a bit grumpy, but it turned out she was quite a nice person in the end, and another nurse was rude not to me but to another patient who was so annoying he really got on my tits. The difference of course was that it wasn’t my job to be friendly to him. Otherwise let’s just say the next time there’s a demonstration against cutting the salaries of healthcare professionals, I’ll try to make an appearance.

Okay, then there’s this bit – I mentioned I wrote a pretty candid account of what I was going through in the ward in my Facebook, and this is what it looked like:

February 2: Today I apparently unlocked the skill of getting up with handholds and standing up. The occupational therapist, who was present in the morning to check out how I handle the shower and teach me how to put on pants, didn’t really appreciate me finding that skill by me suddenly standing up in a crouch wearing only undies and sandals, leaning on to the shower chair arm rests and going “What am I doing, look what I am doing?!” I apparently scared her half to death, since it really didn’t look safe, and by “didn’t look” I mean wasn’t. I also got the pants on without any help.

Why physiotherapists shouldn’t joke:
Physiotherapist: “Do 1000 repetitions on that machine.”
Me: O_o
Half an hour passes.
Physiotherapist: “How many repetitions did you do?”
Me: “1008”
Physiotherapist: “O_o I was kind of joking about it.”
Me: “I peed myself.”

Speaking of peeing myself, it’s still open house in my bladder, and I’ve pretty much marked the 4th and 3rd floor of this building and two dozen pairs of pants as my territory & property, because the urinal thingies are leaky pieces of shit. Because I’m a man of certain age, I had an appointment to get Botox and Viagra. In practice that meant an urodynamics test where the bladder is filled with saline and a whole lot of stuff is measured, resulting in perhaps some Botox injections on the bladder walls to make it behave. It was first scheduled in March, which was a long time away, but there was a cancellation for today. When we were there and ready to go, the tests showed I have another UTI brewing, so no go. Also they let me flop down on the examination chair hard enough to hurt my neck. The next appointment is in two weeks. I am not happy.

The Viagra? Well I’m not sure if that’s what I’m getting or if I need it, but when I told my doctor that I’m planning to use my penis for more than wetting the hospital textiles, her reply was “Yeah, let’s get you some pills and the time to experiment. You have a private room and we can close the door – although this may not be the most stimulating environment”. I don’t see that as awkward at all: “Nurse, hand me my sex pills and close the door, I’m going to whip it like a slow racehorse. I’ll ring you for a washcloth in, let’s see… it’s been nine weeks, so in about five minutes.”

Oh and since so many people have asked about it privately (I honestly didn’t know so many of you care!), I do get erections, as in morning wood, when having naughty dreams and when people are handling my junk, like with the urinal and catheter stuff. The latter was initially awkward and I was like “WHAT R U DOING PEENOR THIS IS NOT SEXY TIMES :|” but the nurses were like “whatevaaa, happens to everyone” and I was like “K” and the new normal is talking about politics and cultural history half naked and sporting wood with someone who’s installing tubing on your penis.

But yea, spinal injury can affect sex stuff, such as no sensation, no erection, delayed orgasm, not maintaining erection, ejaculation slipping into the bladder (yeah, seriously) and autonomic dysreflexia, where your blood pressure can shoot up to 300 and you can die – so potentially I can be fucked to death, literally. No applications to do that, thanks, I’m spoken for.

Right, this concludes today’s broadcast from radio TMI, thanks for listening.

And here’s an another bit about stupid outdated gender roles.

A discussion yesterday reminded of the fact how this whole deal reminds me multiple times a day how I’m not a Real (Finnish) Man ™. It started with the nurses tiptoeing skillfully around the whole diaper issue, since apparently it’s a huge problem for Real Men. Me, I don’t care – I mean it was not comfortable but it’s far more comfortable than doing your business in your pants or the bed.

Still, every day, the following conversation gets repeated at least three times, which is starting to annoy me, although I understand the reason for it: Nurse/therapist: “Tell me immediately if you are dizzy or if this hurts, promise?” Me: “Yep yep, I’m still not a Real Finnish Man, remember that ‘ow’ is the safe word and I’ll say immediately if I feel like the lights are going out.” The thing is, they have to keep asking that since apparently many men just say they’re okay, even when everybody can see they’re in agony or about to drop, face clenched, pallid and drenched in sweat.

Then there’s the whole issue of sex and does your dingdong salute & shoot after the injury. Talk about a delicate issue. When this whole deal came up (bada-ching!) I told the urotherapist they don’t have to dance around the issue since I don’t carry my ego in my penis, so let’s just talk straight – which, I think, cut the duration of the meeting in half.

So, apparently Real (Finnish) Men like to be in pain, faint a lot and soil their pants, and their self worth hangs on their erection. I’m quite happy I’m not one.

A crucial note, though: I’m not belittling or mocking anyone’s anxiety or suffering here, not one goddamn bit! This is a ward where rolling down a hallway you can hear adult people howl-crying in their room, and injury like this can hit and affect people HARD. I just find it so fucking tragic that this perception of what a Real Man should be makes the suffering and anxiety so much worse for so many people, for no good reason.

Activities & Social Life

Once every month there was a meeting that gathered together me, the doctor, the therapists and nurses who had been dealing with me, and relatives where applicable. I had heard I got the video game writer job and that it would be okay if I started in April instead of January. I brought that up in the first meeting, which caused a chuckle, since going back to work wasn’t apparently an usual topic for first meetings. There can’t be more than four or five full day game writer positions in Finland, and I wasn’t going to miss the only realistic chance to grab one, so we made some preliminary plans for it.

My social calendar was ridiculously full for the duration of the rehab period, there were more visitors than in the last few years combined. The weekends in the ward were excruciatingly dull, especially the Sundays when there was no physio or anything else. My social worker managed to wrangle me some taxi vouchers, and in the end of the January I started going out to trips to the world, starting with going to see Force Awakens in the cinema. I went out to see a couple of movies and have a dinner with the then SO. (The budding relationship faded away, the fourth date in ICU and two people with their health problems wasn’t really a foundation to build on.) We had a restaurant dinner with a big group of Tampere era friends, I went to visit an art museum with one pal, out to check out a reptile exhibition with another, etc. Just going out there, away from the claustrophobic world of the ward.

As for the new job, when I got a computer desk and started being able to operate a laptop, I started doing some preparatory stuff. I mentioned the nerve pains and the Lyrica earlier, and it was here I really became aware of the side effects. On the day I had to finish one document the dose was just upped to 600mg. When I woke up, the world was full of gelatin and I was kind of drifting through it. I had noticed earlier that my eyes would suddenly lose their focus, and I wondered if I should visit the neuropsychologist again to see if it was brain related, since I was also forgetting very common words many times a day (words like table, leg, etc.) The doctor just breezily said the blurriness is a common side effect of Lyrica. I don’t generally read the side effects of medications for obvious reasons, but this time I did and they specifically listed also word blindness. I sent out that document, fearing it would be utter dada, but got good feedback and some clarification requests. As I checked those, they were about stuff I thought I had written in, but I had probably just been staring at the screen, drooling a bit. After that I asked them to lower the dose a bit, but little did I know this was just the beginning of the Lyrica saga.

The Real World Creeping In

After the first few weeks of the Hospital Holiday the real world started creeping back in. The first step of the honeymoon being over was being kicked out of my private room to a three person room, where there usually were just two of us. The solo room had been a huge boost to my mental wellbeing. People mistake me for an extrovert, but I really am not. I almost flipped out in the trauma ward having to share the room with a revolving cast of people and a blaring TV, and now I was back in a similar situation. Roommates, of whom I’d have such stories to tell, but not this publicly. And the TV, always the motherfucking TV. I’ve come away from this with a sensitivity to broadcast TV that’s irrational and weird. On a bad day if I just hear a commercial jingle or see a glimpse of  daytime show, my thoughts derail and it’s almost hard to breathe. I know how it sounds, but yeah.

The second big thing was figuring out where I’m going to be living in and how to move there. Thank fuck both the hospital social worker and the rehabilitation councillor in Turku were goddamn ninjas for getting things done. It became clear quite fast that my new apartment wouldn’t be suitable for me in the future. The city would renovate it to accommodate a wheelchair, but the main problem was the tall hill it was on top of. The councillor kept hunting for apartments for me, all of which had some major problems – like me not being able to open the front door without assistance. I wanted to live as independently as possible under the circumstances, and to not make being disabled a hobby that would consume my life to the detriment of work, hobbies and so on, so we started looking at assisted living. It turned out that there was an opening in a place that was far outside the city in Turku standards (an average commute in the capital region), but it would be perfect for me. A row house apartment close to nature, I’ll be living in my own apartment with an entrance of my own, but I could get help with the press of a button.

Then there was the bureaucracy, and hoo boy… I had to apply for a bunch of benefits and assistive care, I needed to get my catheters and other such stuff from a central dispensary, there was the issue of getting gear such as crutches and computer stuff, there was finding, interviewing and hiring an assistant for the work and for the free time, joining an union so the assistants would get a better salary, applying for taxi cards for the disabled (work and free time both), figuring out where to get the medication, and of course organizing the move. There was a surreal thing with the latter: the city was willing to pay thousands of euros to renovate my old flat, but not a cent for my move.

On the assistant front there’s this organization in Turku that handles the hiring and employment bureaucracy, but we couldn’t reach anyone from there in spite of a week and a half of trying, not to even ask about the salary so we could set up a job ad. As I said, the social worker was a goddamn ninja, so we got that handled on our own. I got around 25 applications for my job assistant ad, and found a good one pretty fast.

The Move, Part One: The Stuffening

The thing I was stressing the most was the move, which I had to organize blind from another city. As a control freak that was not an easy pill to swallow. I didn’t know a lot of people from Turku, so I was worried if I can get enough help there – but damn, people really surprised me. My stuff was moved about a week before I was discharged, and I wanted to be there, to act as a doorstop if nothing else. When I asked for help, a surprising bunch answered – former colleagues, people I had seen 20 years ago, and so forth. I had been hoping we could get the boxes moved and the old place empty during the moving day, and there would be a week to get the old place cleaned up and the boxes empty. When I was halfway from Tampere to Turku I almost fell off my wheelchair when I got a text in the vein of “The old apartment is empty, we’ll start cleaning it up!” Long story short, we got all the furniture in place, all the boxes empty, the old place cleaned up and still had time left over to shoot some shit and eat pizza. Almost makes me misty to think about it – thank you again, people!

The Weeks of Utter Suck

I got discharged the 1st of April (yeah, I know) and I have to say the first week at home was probably the worst week of my life so far. Things started going to shit a few days before the move, when the ordinary catheters didn’t go in anymore, and it started being apparent I had another UTI. I needed special catheters which are kind of expensive, so it takes some wrangling to get them outside of a hospital. They took the tests, but the results would come only when I was at home.

Everything else in the rehabilitation unit was damn well done, but their discharge process could use some work. A bunch of random people dropped in to give me stacks of papers, sometimes in duplicate, and I had no idea what they were. I was so overloaded that even when I had the presence of mind to ask, I forgot it by the time they were out of the door. The only exception was the social worker, whose papers had nice little post-it notes with instructions on where to deliver them, and underlined bits to show what was important. Some kind of a checklist would have been great, with info about what had been handled and what there was still to do. Now I was left with barely contained chaos.

Things started to go to shit when the taxi left the hospital yard. Nobody had warned me that there could be more people in the same taxi, going to different destinations. After two hours the UTI started to make me want to pee, and I realized we were somewhere in the middle of the Finnish countryside instead of Turku, and that it would take us another two hours to arrive. Something had been nagging at me, some choice of words, and getting a bad premonition I asked the assistants in my new home if my catheters and other stuff had been ordered and arrived. “No, you said you were ordering it!” was the reply. So, I was heading into a place where I couldn’t piss in because of a simple mutual misunderstanding. I also had medication for just a couple of days and I had to figure out how to get more. Earlier I mentioned my old landlord was such a nitpicky guy I had a few yellow warning lights on, and he chose that exact moment to start texting me about some little scratches and dings in the place, plus badly done cleaning. My stress levels were through the roof, he kept nagging and I almost phoned him to scream that he could shove the scratches up his ass until he tasted them, but managed to bite my tongue.

The next days went in a fugue. The rehab counselor drove around the city to get me the specialty catheters one sample case at a time. I went to the hospital to beg for more, only to hear my papers hadn’t been transferred there, and to realize I had no idea who should I contact about, well, anything health related. The test results dragged on, and I think I may have needed to retake it or something, but my memories are a bit foggy on that. Once I got the antibiotics, I started peeing all over again, which gave rise to the issue where will I get diapers from and on whose dime. I had four months worth of papers and documents to handle, no table of any kind and no functional fingers. Go ahead, I dare you: organize a stack of papers on a bed or on the back of a sofa wearing boxing gloves. The apartment was still a bit of a post-move mess, the clock kept ticking towards the first work day, I had no idea who to get to renew my prescriptions and… yeah. I also had to do my taxes, and the police finished their pretrial investigation, so I had to find a lawyer to look through it. After I had submitted my official change of address notification, I got a phone call from the registry office telling me I can’t move to that address since it’s still registered as being under construction (the contractor had failed to deliver some paper, and the confusion persisted ’till late autumn). Bureaucratic kludges had to be made. The crutches and the rest of the assistive gear for home and work hadn’t been delivered, so I had to figure out which of the three places would provide them, which would I have to apply for, and which to buy on my own dime. There were certain things I needed for the place, like rubber boots and a floor mop for the assistants to use in the shower, so I had to figure out how to go shopping. The bureaucracy of hiring the assistants was still giving me trouble, and I still couldn’t reach people in the assistant center. I think there were out of office / sick leave autoreplys three deep at one point. Without hyperbole: nothing, not the ER, ICU, rehabilitation, not any of those was mentally as bad as the bureaucracy.

The irony is the rehab councillor could’ve helped with this, but I was too harried to understand I could’ve asked. At one point she, the social worker, her replacement and maybe some other people came to visit for a meeting, but I was so out of it I was just nodding along, not remembering who everyone was.

I watched a lot of Netflix in the evenings, losing myself as best I could. In the mornings I invariably woke up to painful spasms and the thought “this is a nightmare and I can’t wake up”. The sight of an official looking envelope in the mailbox made my ribcage shrink and I just wanted to close the box and hope it goes away, and I’m not I’m not that kind of a person, I always handle my stuff. If I’d had a handy cyanide capsule in my tooth, I would have bitten down on it one of those mornings and cracked a smile of relief.

There were some little bright spots which I clung on to. First of all, the apartment and the area were awesome. I live on a large island in the inner archipelago (the south west corner of Finland just starts cleaving apart until at some point you realize you’re living in an island). I can see only forest from all the windows I look out of, including the living room spanning panorama windows. There’s a semi-wild meadow behind my house and in the mornings there may be a fawn and a doe grazing there, and in the evenings there are hares. There’s supposed to be badgers and foxes too, but I still haven’t seen them. I have a sunny porch that’s bigger than my first student apartment was, literally. As I didn’t have my elbow crutches when I came home, I started walking back and forth along the porch using the railing, and realized I could shuffle along without any help, only grabbing the railing when I started keeling over. When Timo and Annika came to visit, I realized I could get in and out of a car without a sliding board, and so on. Little things, but enough to survive on.

Later I realized that I had accidentally quit Effexor cold turkey when coming home. I had been taking it only for a week to help with the nerve pains, not for mood issues. I’m not sure if that was long enough to cause withdrawal, but it can’t have helped.

Achievement Unlocked: Dream Job 3/3

I’ve had three realistic dream jobs since my childhood. A diving marine biologist: check. A scifi author: check. A video game writer: now, check. When I got injured, I was granted 300 days of sick leave and a temporary unemployment pension which would’ve been turned into a permanent one pretty certainly. After I got discharged I took 11 days of sick leave and went to work. This wasn’t perhaps smart in the traditional sense of the word, but here’s the thing – if I hadn’t at least tried, I would have never forgiven myself. As I wrote earlier, full time game writer jobs are incredibly rare. I had been stalking this job a year and a half, I had moved to bloody Turku in part because of it, so I wasn’t going to let this little ding stop me. Any other job, yeah – I would have stayed home.

All in all, the job started quite nicely, and frankly it was a damn boon for my mental well being. If I had stayed at home, my life would’ve shrunk quite damn small. I don’t know that many people in Turku, and in the summer I wasn’t still so confident and mobile that I could’ve moved about a lot. The job gave me something to wake up to in the mornings, and a launchpad to enter the world. That doesn’t mean it was easy, though. Especially in the beginning, when I was still physically and mentally convalescent, I was so exhausted after the day that I had to take a 2-3 hour nap – more often than not enjoying the sunshine or a summer rain in my patio. The damn Lyrica made my head swim ’till the noon, but I learned to work around the word blindness, seeing a blank spot in a sentence rush at me and then just rephrasing around it. The lack of functioning fingers made me rethink some of my work habits, like doing walls of crazy from sticky notes and so forth. It was a learning process, and it still is.

Counting Casualties –  Or Going From Espresso to Lipton Yellow Label

My life started to get on track. I got the bureaucracy handled document after document, hired a free time assistant who could help me in non-work-related trips and events, and managed to get the apartment set up as I liked. The UTI and the after effects cleared up, until I got an another one in June that took me to a hospital in high enough fever to make me slightly delirious to enjoy weird looping dreams similar to those I’d had in the trauma ward. I got away from that without after effects, which was a huge damn relief.

I had indeed settled into a Routine with a capital R. Alarm went off at 7:00. At 7:04 I had taken my morning meds and a few minutes later the morning assistant popped in. At 8:30 I was out of the toilet, dressed up and out of the door, ready for the breakfast. 9:00 the taxi took me to work on the same exact route. 11:30 pee break and off to buy a lunch salad, or going out for a burger if was feeling adventurous (but not too often since I should live on 1600kcal a day). An afternoon of work, then to home for a 2-3 hour nap, an dinner of a protein curd and a fruit, a couple of episodes of some series in Netflix and then off to bed. Oh, and the first wake up of the day was usually on 4-5am to painful muscle spasms that felt like they would dislocate a finger or two (a doctor and a nurse said that’s not possible, and the hospital occupational therapist promised to buy me a coffee and a Danish if I managed to do it, so I wasn’t too worried). Twice or thrice a week there’s physiotherapy, where we do mostly the same exercises that keep me functional. The physiotherapists are a fun bunch and I like seeing them, but however utterly necessary and to the point the exercise, it’s frankly quite repetitive and not very interesting as a sport. Well, I’m not going there to be entertained, and it fills its purpose better than well.

Pondering about things I had lost, one thing had me go uh-oh already in the hospital. Broadly speaking there are things in life that make me feel restless, anxious, cranky and trapped, and things that bring me peace, quiet and serenity. The former include pretty much everything involving sitting indoors at home and/or in front of the screen, and repeating routines. The latter included spontaneous adventures such as geocaching and urbex, interesting exercise like bouldering, moving in the nature, diving, being on the road… You can maybe see the problem there. Everything that brought me serenity was out the window, and I was ready to throw a shoe at everybody who went “but you’ll find something else!” It’s not like I could try out crosshatching or shuffleboard and suddenly realize I love it, because the common denominator there is spontaneity and exploration. Spontaneity is dead in me nowadays, since I need to book an assistant to go pretty much anywhere, and places that have wheelchair ramps don’t really fall under the idea of exploration. Then there’s the “you’ll just have to learn to enjoy X” angle which also results in airborne footwear. I’ve spent long enough figuring out what I do like and what I don’t, and how to get my head to behave, that I know I can’t just decide to start liking certain type of stuff. Goes a bit deeper than just preferences.

There were two realizations that came as unwelcome surprises. First of all, already in the hospital I asked for tips for traveling while quadriplegic, but it took me ’till late summer to realize I had lost the point of going abroad. This is my idea of a good trip. Nature, activity, off the beaten path stuff (like the trip to Greece in the end of this). Given a choice of a beach holiday, a city holiday with just some dinners and museums, or god forbid a shopping & clubbing trip, I would have rather stayed at home and used the money for something else. Flying is going to be a huge hassle for me because of the catheter thing, plus I need an assistant and disabled accommodation which can cost shitloads, so the bang for the buck better be considerable. Right now I see little incentive to travel, which stings a bit since 40-50 was kind of going to be a decade of traveling.

The second realization is that… Well, a pal asked me what I am looking forward to now, and the answer is “nothing, really”. I’ve paced my life with the everyday adventures in the short term, and interesting trips and such in the long haul. Now all the previous “I can hardly wait ’till X” things are off the table. Especially in the summer and autumn I felt like I was staring down a barrel of lukewarm Groundhog Days of 7:00 wake ups and dull repetition, with no recourse. Weak tea instead of espresso.

That said, I’ve done fun stuff throughout the year, as much as I’ve been able to. I’ve gone through the Turku area museums, some more than once as the exhibitions have changed. I’ve seen both mainstream and art house films, took part in this year’s Quantum Game Jam, I spent my two non-sick-leave free days visiting the dive job workmates for the summer party (six hour drive there, 3-4 hours of socializing, and six hours back, followed by a day of sleeping – absolutely worth it!). I’ve gone to see a tournament in Turku castle, played board games with the colleagues, gone geocaching alone, with the assistant and with Heli, gone to theater, seen standup, almost seen an opera but a taxi driver messed that up, went to the H2Ö music festival for a nice day, visited the local IGDA hub events etc. Just gone alone and assistantless to a cafe to peoplewatch and play Pathfinder on iPad. I’ve been dating a bit, without any huge pressure to dash into a relationship but to find fun new people (which is how I’ve done it when okay as well), and that’s exactly what I’ve found. I’ve gotten drunk a few times on good whiskey and in the studio Christmas party, but nowadays it’s a bit of a hassle because of you guessed it, peeing through a tube. The first time I did that was the day I sold all of my scuba gear in the mid-autumn. Weirdly, that was the day I transitioned from being a fragile patient living in a limbo back to being a person.

I was also lucky enough to get a Stricker handbike on loan from the assistive gear unit. It has broadened my horizons a lot, and the longest trip I’ve done with it has been 10km while trying to find a route to a shoreline around the numerous private property beams that litter this island.

Better Living Through Gadgetry (And Elaborate Breakfast Sandwiches)

I’ve also been reclaiming my life step by step, starting from such little things as fixing my own breakfast in the weekends instead of eating in the common area, although with help. It’s the difference between a light Finnish roast coffee and rye bread with basic cheese, tomato and lettuce, and a nice French press dark roast and a sandwich with pesto, Brie and apple slices, for example. The other things that have made my life feel better have been a bit surprising in their geekishness – and I’m frankly annoyed I didn’t figure them out in the summer, since it would have made the months much more bearable.

The first thing was fixing up my old Airport Express to stream sound from my computer to my living room, which made it possible to listen to audiobooks in the weekend mornings and after work, and Bassoradio stream instead of YleX with its same five pop songs every day. I had especially missed the audiobooks, since my normal slot for listening to them, work trips and walking outside, had vanished.

The second thing was Playstation 4. I had written off console gaming, since I thought I couldn’t operate a pad anymore. I was pissed off in the winter since I had just missed Fallout 4. In the rehab I met with this peer support guy who had less functional fingers than I did, and the same thing had happened to him with Skyrim, but he had finished it on PC. It took me embarrassingly long to start doubting my judgement that I can’t use a pad, and to check online for quadriplegic gamers. I found people in far worse shape than myself playing online shooters on consoles with their knuckles or their goddamn face. I decided to stop whining, get a console and yeah, I’m an ungodly amount of hours deep in Fallout 4 as we speak. It feels damn great to do something active instead of passively consuming worse and worse series on Netflix… Also, it’s extremely good exercise for my fingers and helps with the nerve pains!

Lyrica Withdrawal Blues

One of the reasons the summer was so sucky moodwise was that I got fed up with the Lyrica side effects and decided to get rid of it. Due to a slight miscalculation I did it 30% too fast compared to what the doctor recommended and hoooo boy, the withdrawal did a real number on my mood. I dropped one 75mg capsule every two weeks, and every time I did that, the next week was full of very uncharacteristic gloom and anxiety. I wondered for a moment if I was just blaming the drug for feeling bad, but it was cyclic and steady as a clockwork. On the plus side, the three hour afternoon naps turned to one hour naps, then a half a hour shut-eye, and finally to slight grogginess. The word blindness vanished as well. On the minus side I stopped sleeping as deeply as I had, and the nerve pains returned somewhat. The sewing needle comes occasionally back to jab me on the fingertip every heartbeat, a wool blanket can feel like steel wool, my fingers constantly feel like they’re ice cold, and there can be “neural white noise” which is like numb tingling except the “pins and needles” are more like “the tiniest papercuts”. All this is very much bearable and a small price to pay for a functional brain.

I’m not usually one to offer advice about medication, since I’m not a bloody doctor, but here I’m going to make a small exception: if you’re offered high doses of Lyrica, by my experience you might want to increase the dosage slowly, in case you need to wean yourself away from it…

Inspiration Porn, Heroic Healers & Bringer of Perspective

I have been pretty open about my recovery and I guess I’m generally pretty upbeat and gushy about things, although I’ve tried to be careful that I don’t give a falsely rosy image of how I’m doing. I’ve had my bad days and bad weeks, and I’ve tried to bring that up too. People have been wonderfully encouraging and helpful to a degree that’s made me humbly grateful. Nevertheless, I have run into some attitudes that are a bit wonky – mostly outside of my circles.

I was already familiar with the term inspiration porn when I was okay. After I was injured I thought that it could be potentially really annoying and even insulting to some, but I wouldn’t probably be that annoyed by it. The thing is, turns out I’m starting to be. My first blatant encounter with this was after I’d given an interview where I had been talking about the phenomenon with the journo, and as we were taking photos a drunk guy insisted on coming to shake my hand and say how great it is that I was so upbeat although I was disabled, and that “I have problems but hey, they’re small, at least I’m not in a wheelchair”. Gee. Thanks. Here I was sitting in a chair smiling at the camera and chatting, but I guess that’s somehow special. At least it made for a great ending for the article. I had been documenting my healing process online quite openly, and it was fun to tell people what was happening and give a glimpse to this kind of process. In the autumn I started phasing that out, since I started to feel like a dancing monkey showcasing their new tricks – and I hasten to say this was just about me, not due to anything anyone said or did, since people have been mostly just wonderful. I just started to want to be a person again, not a patient.

I’ve heard that comment about someone’s problems feeling small compared to mine a bunch of times after that, and although I don’t mind being a cautionary example, hearing that face to face is starting to come with a bigger and bigger twinge of annoyance. Yeah, I too would really enjoy worrying about smaller things than the million health and bureaucracy issues that come with being disabled, but maybe don’t rub that in my face? That said, without sarcasm: by all means, feel free to think that there for the grace of God go I, and I’m genuinely happy if this makes you appreciate little things more.

I’ve recovered fast and I’ve managed to stay more or less positive or at least active throughout the ordeal. When I was younger, I would’ve probably attributed it more to my own excellence, but nowadays I think that I’ve mostly been very lucky. It’s not my plucky disposition that’s made me heal fast, that’s been the nature of the injury. No amount of positive thinking is going to make the nerves grow back any faster. True, I’ve been motivated to exercise and to function near the potential of what my body can do in a given moment, but then again my brain’s tendency to veer towards mania instead of depression has been of great help here, as well as me not having a very set sense of self. Two things that have been at times a liability are now pretty useful.

It’s a bit tricky to articulate what I mean here, explicitly. I’m not saying person’s own actions and attitudes don’t play any role in rehabilitation and that everything is just down to luck, because there’s always some latitude to adjust your actions, and exercise matters. There are these action spaces delimited by your personal parameters where you can choose for example to exercise or sit on your ass, or to be either positive or a cranky defeatist. Or, as a more relevant example, you can choose to only go through the motions in physiotherapy and occupational therapy and ask for assistants to do everything outside of those, or you can try to actively use those skills and keep exercising them outside of the therapy, even though it’s hard and frustrating and you fail a lot (I fell down 12 or 13 times between last April and December). But these down to individual characteristics and the situation – if you are depressive or the disability hit you hard and you’re in a shock, it’s sadism to guilt trip you to be positive. Also it’s damn okay and healthy to be cranky, frustrated even depressed at times. I’ve screamed and cursed bad enough to curdle the milk in the neighbor’s fridge after dropping the same spoon thrice or something, and considered the benefits of crawling into a boghole when thinking about all the adventures I’ve lost. I consider this just healthy.

We should be really careful of not veering into a territory where we hint that if someone doesn’t heal, it’s due to their bad attitude. I loathe this goddamn libertarianism of emotions and positivity fascism, featuring the horrible guilt-tripping fallacy of the the universe punishing you for any negativity. So you aren’t allowed to be sad and depressed, and the only way to heal is to be plucky and bouncy. If someone heals faster from an injury, maybe, just maybe they’re not an inherently better person, maybe they just had their head in a slightly different angle when they headbutted their respective wall. I’m fed up up to my ears with the peddlers of positivity and the “the only disability is a bad attitude” type of bullcrap.

Also, “everything happens for a reason” and “you are never given more than you can carry” are unbelievably toxic bullshit, and it’s okay to cut people who peddle that out of your life.

The Autumn of Torpor & Writing

As the autumn crept in and the weather turned all British, my world shrank to the size of my apartment, the workplace, the physiotherapist’s gym and the pool where we did part of the physio. I’m not made of sugar and I don’t mind rain as such, but it makes the hand rims of the wheelchair so slippery I can’t move uphill, or brake when coming downhill. Swimming was a great addition to the physio, since having water take part of my weight helped in figuring out how the muscles in my legs work. An immediate epiphany was that my right leg isn’t actually weak as such, but when I try to move it, opposing muscles both flex. I.e. if I try to bend it by the knee, my thigh muscle also flexes. On other things, apparently the injury and having to use my arms more has made me more susceptible to migraine. I’ve had five non-hangover-related migraine attacks in my life, and three of them happened this year.

The autumn had its ups and downs, but I really felt the aforementioned Groundhog Day sink in. Stuck and trapped, continuing the lost mindscapes of the autumn of 2015 after the few month interlude, the personal epiphany still unaddressed. It got a bit easier after I got the PS4, the living room audio sorted, and some other electronics that made the everyday grind much more bearable. I made some headway at work, including forcing myself to make the sticky-note walls of crazy which cleared up things considerably. Also I found out that I enjoy working with a writers’ room immensely. I’ve done some collaborative LARP writing earlier, but most of my stuff has been just one monkey with a typewriter. I had been utterly stuck with some parts of the story for months, but sometimes it took just a half an hour long meeting for someone to come up with an elegant solution. Although it hasn’t been just strawberries and champagne, even in the shittiest days this has been the best dayjob I’ve ever had, and something I feel  I’m built for.

I mentioned this has been a year of writing. I wish I could say I compensated the situation by writing and producing more, but sadly no. Then again my dayjob was writing, 7.5 hours a day, 37.5 hours a week. I hammered together a script for the third Torsobear album, edited three short stories that are coming out in anthologies the next year, and had one of my stories translated in Spanish for Luces del norte – antología de ciencia ficción finlandesa anthology that was published in Eurocon. Two of my stories were nominated for the yearly largest spe-fi story award Atorox, and one of them came 7th. I translated that and a couple of drabbles in English for purposes related to the coming Worldcon in Helsinki.

That said I was struggling with a mild lack of purpose with creative endeavors, since it’s become clear to me I’ve kind of missed my window in several things. But I’m not complaining, really, nor am I giving up. I’m finally getting stuff out there and earning a goddamn monthly salary from creative writing, which is an unicorn I’m gonna ride hard.

The Christmas Surprise

Soon it was December 5th, the anniversary of the injury. It didn’t have much emotional significance for me, but the practical implications were big. With a spinal cord injury the first year is a period of fast recuperation, and after that you kind of know what level of functionality you’ll be left with. My list is as follows:

• I can move about with a wheelchair pretty much independently, but I need help getting up steep hills, over high thresholds, and opening stiff and heavy doors.
• I can walk with crutches, but not steadily, for about 100m. It’s exercise, not a functional means of transport.
• I can walk on level ground and up and down stairs if there’s a railing or someone to support me.
• My fingers are clumsy, on the left hand I can hack a proper pincer grip and I can extend my left index finger, but the right hand is less functional. I can grab items such as drinking glasses and even pick pills off the ground. It’s very illogical what I can and can’t do. I can twirl a bo stick, use a precision screwdriver to assemble oxygen testers and HD enclosures, but I need someone to cut up a hamburger, close an ornery zipper, use a cheese lathe or open a yoghurt or a catheter package.
• I can eat independently for the most part, but I need an assistant to open most containers and to cut up food.
• I pee via disposable one use catheters approximately every four hours, apart from the night if I take some brain hormones to stop urine from forming. I need an assistant to open the packages and generally to keep things hygienic (i.e. to keep stuff off the floor and to keep the gear disinfected).
• I need laxatives to poop and I spend a cozy 30-45 minutes on the toilet every morning (all in all, my morning stuff including breakfast takes some two hours). I can wipe and bidet shower myself without help.
• I can mostly dress myself up, apart from buttons, shitty zippers and the pressure socks which have to be put on and taken off by an assistant. I need the pressure socks to keep my right ankle swelling up like a balloon.
• Under my navel I feel touch and I know which way around my legs are. I can’t really feel much hot or cold, or pain. The sense of temperature and pain starts to diminish in my hands when going from the index finger to the little finger.

So, it looked like that was what I had to work with. I honestly didn’t have hopes for much more. The only thing I dreamed about against all hope was being able to pee, because that’s the most limiting thing in my life right now. I can risk a two hour trip to a cafe or somewhere without an assistant, but that’s about it. I can pee voluntarily a little bit, sometimes, but not enough and not reliably enough to make a difference. Luckily the early morning spasms weren’t as painful anymore.

Luckily this year had a nice surprise in store for me.

I’ve tried to get some exercise on my legs to prevent the chicken leg syndrome, but slowly and steadily the muscles have started to atrophy. I kept wracking my brain about how to get some exercise for them. I asked around for an access to an exercycle, with little luck, and then on a Sunday a week before Christmas it hit me: why the heck don’t I have a rollator walker? Walking with the crutches is too wobbly for any practical use, like going to the store, since it would take only one kid who doesn’t watch where he’s going to make me land face first in a veggie bin. Besides it ties up both of my hands, so I can’t pick up stuff or carry a bag. A walker would fix all that.

On the next morning I phoned the assistive gear unit. “Why the heck don’t I have a walker?” “Umm, phone the assistive gear unit in Turku University Hospital.”  I phone there. “Why the heck don’t I have a walker?” “Umm, can you come in at 9am tomorrow morning?” “That is acceptable.” I go in, thinking they can’t possibly meet my expectations, which is a walker sturdy enough to sit on and to have a basket for shopping and stuff, but light enough and preferably collapsible so it’s easy to transport, plus I need to be able to use the brakes with my dead and disgusting hands. They promptly trotted out such an exact thing, give it to me on a year’s loan, and I’m out of there in half an hour.

That same day I walked downstairs to a store to buy my lunch salad, and back to the office. The pain and strain levels were in a HUAAARGH MY ANKLE IS ON FIRE AND IT FEELS LIKE I HAVEN’T USED THESE MUSCLES FOR A YEAR territory, but the muscles recuperated fast. The next day I worked from home and walk to the main building for a lunch and back. The day after that I do the lunch run again at the office, with much less pain. I start noticing things, like the circulation in my right leg being so much better the toes aren’t plum colored any more, and the annoying “drummer spasms” vanishing almost completely (especially my right leg did this thing where it starts tapping and doesn’t stop, which is a very common thing – essentially the knee jerk reflex stuck on a loop). Standing up is suddenly much easier. Walking without support for short distances is suddenly easier…

As I mentioned earlier, although I live on an island, getting to a shoreline to enjoy a moment sitting by the sea is surprisingly difficult, since all the shores seem to be private property. There’s one close to where I live that kind of underlined my current limitations. It’s zoned to be a harbour but mostly undeveloped. The road there is closed with a beam but there are paths around it since people don’t care. Paths two handspans wide that have either big rocks on them or which slope down to a ditch. There was no way in hell I could get around the beam on a wheelchair.

The week after Christmas I headed out with the walker to grab lunch, but on an impulse I turned down the gravel road down to that beam. The winter gale was behind me and it was downhill, and I just wanted to see how far I would get. When I saw the beam, I couldn’t resist trying to reach it. When I was there, I couldn’t resist trying to go around it. When that was done, I noticed that between me and shoreline there were some remnants of some old structures one needed to get over to reach the pier, but I had come too far to let those stop me. And soon, there I was, sitting on the end of the pier, looking over the sea for the first time in over a year, enjoying the golden sunshine playing on the ice and the wind that was tugging on my clothes and hair, and the tall yellow reeds on the shoreline.

Going back I was walking against the gale, on a gravel road, uphill. 20m from the main building I was so dizzy I was seriously worried I was going to faint, but didn’t. Eating the lunch I checked the map and realized I had walked one kilometer. The pain and the dizziness, all worth it – plus it had a faint tinge of doing what I used to do, i.e. going on impulse to some bloody stupid place without informing anybody and no plan how to get back.

So What Next?

That rollator walker thing and the quantum leap it caused in my ability to function threw a nice curve ball and opened new and interesting horizons for the next year. Last summer I resigned to the fact that I’ll probably be in a wheelchair for the rest of my life, and I didn’t have any reason to doubt it until this. In 2017 I’ll have to see how far I can go with this. I’m not expecting wonders, but I’m hoping I could phase out the wheelchair at least a bit.

One thing getting the walker just like that underlined for me was that as a quadriplegia level disabled person I’m happily privileged. When it comes to the assistive gear etc., I’ve gotten everything I have wanted and needed promptly and for free (or in practice on a loan for 1-5 years) without having to fight with insurance companies or the bureaucracy for them, including the physiotherapy and the occupational therapy. I have a dayjob, and not some busywork but one of my dream jobs. Weirdly enough, I’m currently financially in a better shape than in any given moment in my adult life. I didn’t spend much money last winter on everyday living, so I could pay off my debts. Since expenses like travel, bars, diving gear etc. are out of the picture now, I can actually manage surprisingly okay. I’ve heard stories where all of these things have gone… differently.

So, although I’m doing okay right now, I know I’m walking on a very thing crust, and to put it bluntly, the only likely direction is down. Financially, there aren’t that many jobs I can do, and although there aren’t any red flags, nothing is forever especially in this economy. When that happens, I will be a quadriplegic unemployed generalist (obviously the diving and nature stuff is out), most of whose skill set went out the window and who requires a lot of special considerations – such as being able to fuck off to physiotherapy and occupational therapy 3-4 times per week during office hours. I won’t be even in the same page as the word “employable”, and now that I’ve been working a while, it’s going to be quite a fight to get to be considered for a disability pension again. Physically, yeah, I was in a good shape when I got injured and exercise has kept me functional, but it takes one health problem that puts me in bedrest to create quite the setback. I can’t imagine I have many years of peak performance left.

The there are the accommodations. I need help around the day, and living where I do gives me a chance to lead some semblance of a normal life. I love the apartment itself, the staff is great and I get just the help I need when I need it. Right now I’m honestly scared that someone in a city will look at some Excel sheet and decide I’d be better off (=cheaper) living on my own. I have no idea how that would work in practice. Am I supposed to schedule my toilet breaks to the assistant visits, or is there going to be someone hovering behind my shoulder 24/7 in some small Suicide Studio in the outskirts of the city, for example? Even thinking about the latter makes my throat feel tight.

I’m writing this on January 1st, after a lovely 1.2 km walk on the shoreline in a good company, which did wonders for my customary morose Christmas week funk. I was asked what my goals are, which is a good question, since most of the old ones went out the window. I guess the immediate concrete ones are to keep exercising, to get back to doing interesting outdoorsy stuff like monoski slalom if we’ll get some semblance of a winter here in the coast, and kayaking and sailing when the summer comes. Maybe horseback riding as well.

To find ways to reclaim the serenity somehow, I guess that’s my goal.

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