I felt like I was going to pass out. Mum was on the phone so I started serving up dinner for my nephew and my little brother, and I started sweating like I’d just run a marathon in the middle of the desert while wearing a ski jacket. My legs felt weird, all of me felt weird and I… Dismissed it and carried on. Until I sat down and the world really started to feel weird. So I checked my pulse. I couldn’t find one in my wrist – my heart clearly couldn’t be bothered to beat hard enough to provide a peripheral pulse strong enough to feel. I put two fingers over my carotid artery and found a weak pulse. I started the timer on my phone. 4 beats every second. 4. Beats. Every. Second. Oh Skippy (my name for my heart), not now. Dude, not now. I was already in very mild acidosis again, and trying to pack my stuff to leave for uni. I was cold to touch, but I felt like I was melting, so I stood out in the garden in the cold, the world spinning in a way I’m not sure it is meant to. And I was incapable of worrying, because I’m seemingly incapable of feeling at the minute. So I just sat back down and decided that if I ignored Skippy, he’d slow down. No need to worry, because the rhythm was fast but regular. Right?
And then I packed my stuff up into my uni backpack. And just before we left I went upstairs to put my slippers in my room. Mistake. Stairs + Skippy on a good day = tantrum. Stairs + Skippy when he is beating way too fast and is getting tired = walking back down the stairs with him missing beats and feeling like he’s skipping and flipping and rolling and writhing in my chest. It knocked the breath out of me. The world went black. My feet somehow found the next step. And then the next. And I grabbed the handrail, and I made it to the bottom, my head floating, my heart FREAKING. I told myself it was all in my head, and got in the car.
And then we set off for London.
We sped along the motorway as all the idiot drivers in the world seemed to gather so that they could cut us up, and I just didn’t want to go. London wasn’t home.
When I was seven, my favourite artist was Cat Stevens. My dad used to listen to his Cat Stevens CD in the car, and at the age of seven I knew all the words to all the songs. I sat in the car on my way to London today (now yesterday), and I wrapped myself in the comfort of that album. It played in my headphones and I was suddenly in my mind curled up in the back of the family car on a long old drive, safe and contented. And I remembered every word to every song. I sung softly, quietly, and internally I cried the tears I couldn’t let fall.
Getting out of the car was the hardest thing I’ve done in a long time, just walking away from this metal box that could take me all the way back to my dog and to familiarity that may be unhelpful right now but is exactly that… Familiar.
According to the “DRAFT SAVED” bit of this webpage, I started this post 10 hours ago. I was going to go on to say something along the lines of “I spent the day with My Fellow Third Wheel. He overslept but turned up with food, and we had a feast and we talked and we watched TV through my laptop and it was so good to just hang with him and be with someone who just gets me. And on the way to London I arranged to go see Auntie Godmother and co. tomorrow evening, and she persuaded me to stay…” But my writing of it was interrupted by a phone call. It was a phone call that started at 20:18 on the “today” before this one, and turned into a series of non-stop phone calls and consecutive FaceTime audio calls that lasted until 05:37 today (wait… That’s 9 HOURS). It was a call made by a person who didn’t think I would answer (my uni friend with the same cardiologist as me, who I met a month ago at her own surprise birthday party), and so was stumped when I did, but had just wanted to remind me that people care about me, and that I matter, and she was there. It was a phone call where I spoke about the lessons I’d learned listening to an old man die, how we spend all our lives focussing on things we tell ourselves matter and neglect the things that really do.
It was a phone call that saved my life.
It was a phone call that meant someone would know if I lost consciousness. It was a phone call that lasted so long because she stayed on the line just in case, until she finally fell asleep and I hung up, letting her grab a couple of hours of sleep before her 9am lecture (I am placed miles before studies in terms of priorities with this friend). It was a phone call that meant I was still awake at 3am to feel a sudden deterioration in my health. Therefore, it was a phone call that made the difference between living long enough even to post this, and dying in my sleep within an hour. It was a phone call during which I went on an emotional rollercoaster, realising that after way, way more treatment than I should have required, my blood sugars were plummeting at a highly alarming rate – the horror of realising the helplessness, that I couldn’t get out to get anything and had no food left. It was a phone call in which I couldn’t feel anything about that fact, and then vaguely experienced something close to panic, and then decided this degree isn’t worth this, and then cried. I cried. I was so, so scared. It wasn’t stopping and I was terrified. I didn’t want to die. And this totally calm voice at the other end of the phone told me I wasn’t going to die, it was all going to be ok, and she’d call and someone would come and help me.
If she hadn’t cared enough to just check in. If she hadn’t spent hours trying to help me untangle my feelings with empathy (not sympathy), understanding and psychology knowledge passed on from her psychotherapist mother… If I hadn’t answered that phone… If I hadn’t have checked my blood sugar and seen a near VERTICAL line on my continuos glucose monitor’s graph (my blood sugars went from above 33mmol/L to 9mmol/L within half an hour, and kept on dropping at that rate)… If I’d checked half an hour later… If I’d been asleep, as I would have been if she hadn’t have called… I would never have woken up again.
I think that’s terrifying (I’ll figure out how I feel about it when… All the feelings my brain is stupidly suppressing (??) hit me like a train).
I don’t want to do this anymore. I cried that into the microphone of my headphones with both hands on my head, still not fully feeling an entire emotion and unable to fully freak, so panicking so mildly that there was no adrenaline. And I don’t mean living. I meant that I don’t want to die. I don’t want to go to sleep and almost not wake up any more. I don’t want to live life on this knife edge any more. I just… Broke. We’d started off sorting out uni stuff, drafting an email and discussing work and her telling me she and my other friends would help me get caught up with all the coursework I’d missed and dampening the subdued flames of my fear .I’d read her the email I received in December last year from the deputy head of our school of the university, and she’d been kinda shocked at how unsupportive they were. She understood my concerns about missing any uni at all then. We talked about the lab session this afternoon, about whether or not I would go. She said she’d swap lab sessions and just sit and pretty much run the entire thing herself so I could sit there and just not have to human. We felt a little odd when the friend who left me in resus to go and study messaged me after a week saying she’d seen I was back in London via the tracking app that my friendship group uses to figure out where I’m at (in case of emergency) – I mean it was just an odd way to introduce the subject is all. And none of that mattered afterwards. But how amazing that someone would do all that? That’s a friend. Right there.
I don’t know what to say.
I don’t even know how to feel and I can’t even just let the emotion play itself out so I can figure out how to feel because I CAN’T FEEL.
My heart is super unhappy (heart rate over 140 while I’m laying down), for a long time I couldn’t see properly and hovered on the verge of unconsciousness. Nothing made sense, and in order to figure out what to do I had to throw a load of drunken-sounding illogical stuff at my friend before we found some sensible (and she trusted my judgement towards my health and how to manage it WITHOUT QUESTION, for which she is even more amazing). I feel absolutely drained of all energy. I feel unwell. But I’m alive. And I figured out that I want to be alive. I just don’t want to be in London. I don’t want to waste my life on this degree. What’s it for? I was here, alone, and I almost died. I was away from the dog who would have woken me up way before that point (really should re-evaluate the service dog thing I feel). And I was here for a bit of paper. What’s it all for? It isn’t what matters. I am 40 miles away from the things that matter. Modern life is all so superficial.
“Social media has given us this idea that we should all have a posse of friends when in reality, if we have one or two really good friends, we are lucky.” – Brene Brown
Today was another day I almost died. There have been about five of those in the last three weeks. I looked down at my body, and I asked it to please stop. Please. I cannot handle all the health hiccups. It feels like rapid machine gun fire.
“It hasn’t been a totally smooth road, but in the whole span of things I feel like a very lucky person.” – Edward Furlong
It all feels so surreal. So quickly I was almost gone. My blood sugar levels ended up dangerously low even after I’d spent almost 45 minutes eating every gram of carbohydrate (and eventually spoonfuls of neat sugar) in sight. If I hadn’t been awake to do that… I can’t. I mean… It doesn’t even feel real. I’m kind of in a state of numb shock. So out of control so quickly. And far, far too close for comfort.
None of my other uni friends know I’m back in London. I don’t know how to face normal people.
None of them are even awake I expect.
One of them is sleeping having spent the most ridiculous amount of time on the phone to me. And I am not sleeping the forever sleep, because of her.
Words fail me.