Finding HopeThe Fourth Semester of My Masters
Posted on May 8, 2021
And that’s another semester, another module done. The time is positively flying by and now there’s only one module left. But, before I move into that one, I wanted to reflect on this last module. The Writer’s Voice has been my favourite module so far (as I thought it would be) and I wrote more songs than I did in any of the others so far. I also think I wrote my best – and favourite – songs.
We were in lockdown when the module started so all classes were online. When lockdown started to lift, universities being one of the first things to open up, some of my uni’s courses started having in person classes but my course didn’t as we could continue to function online while other courses, like the performance or production courses, couldn’t. I have to admit I was relieved: I didn’t feel up to handling a big change, especially after having worked so hard to build a good rhythm with the online classes and writing sessions, and I really didn’t feel confident about commuting to London, meaning I probably would’ve stayed in online classes while many of my friends would’ve been onsite. I would’ve barely seen them. I really felt for everyone struggling with online learning (and that’s not to say I love it) but I was really grateful not to have to make a big adjustment in the middle of the semester. So we stayed online.
It was a really great semester and I’m really sad that it’s over – I’m not sure I can do it justice in a simple blog post – even if I’m really excited for what’s next.
We spent the twelve-week module looking at various different techniques related to lyric writing, from song maps and types of rhyme to sensory imagery and ekphrasis. Some of it was difficult, some of it was easy; all of it was an exciting challenge. The first half of the semester was focussed on the more technical, structural side of things, what my tutor (who is just awesome) called ‘thought architecture.’ And then the second half of the semester was focussed on the content of the lyrics and how that content is expressed. We had lectures on the techniques and then we’d get a week to write a song using that technique. I loved it: lyrics have always been my favourite part of songwriting and I’d been looking forward to it since I began the Master’s.
While the lecture group was big, my workshop group was small, made up of just the Part Time Second Years; there were about ten of us and they are all really, really lovely, thoughtful, creative people. I’ve had some great groups throughout this course but this one has felt extra special (although my first group was super special too). I feel like we were a really close-knit group: we shared a lot of stuff, both through our discussions and our songs, and we all cowrote extensively together in various combinations. I actually wrote with everyone in the group, an unintentional achievement that I’m quite proud of.
I think my favourite thing about this module was that the whole point of it was ‘learn things and then write as many songs as possible, learn more things and then write as many songs as possible, and so on, and so on.’ To a degree that’s what most of the other modules wanted you to do too but something felt different about this module; maybe it was because we were focussed on lyrics and that’s my favourite part, maybe it’s because of how much we’ve learned since starting the course and getting to this module, maybe it was because I was in a much better place mentally than I had been in a long time, despite everything going on outside of uni stuff… I don’t know. But something felt different. I was invigorated by the challenge of writing, of just writing all the time. It was awesome. It was so much fun. And I wrote so many songs that I’m so, so proud of:
- I wrote a song called ‘A Thousand Cuts,’ about the slow death of a friendship.
- I wrote a song that I actually really needed to hear myself called ‘One More Time’ as a reminder to always keep going.
- I wrote a song called ‘Astronaut,’ which is something I’ve wanted to do for ages.
- I wrote multiple songs from various fictional characters’ points of view, which I’ve completely fallen in love (I used to really hate it).
- I wrote a song about grief called ‘Incomplete.’
- And so many more…
And that doesn’t include the songs I wrote with others for their projects (I wouldn’t want to give anything away if they decide to release those songs). I love cowriting and I did so much of it this semester, sometimes four in a week, although I admit that that was stupid and completely draining. But it was just so fun and I loved every second of it, even when my brain was exhausted and moving slower than a snail. I loved learning their songwriting languages – each one different, of course – and I loved the challenge trying create the perfect song for them (and I still love both of these things, obviously). I made some really great creative relationships and some really great friends (or strengthened existing friendships) and that’s been the other wonderful thing about this module. These people are just so wonderful and I love writing with them and I sincerely hope that that continues for a long time.
The assessment for this module was a portfolio of four songs and an analysis of some of the techniques used. The song choice was pretty straightforward (at least it felt straightforward – I guess we’ll find out when the grades come out) but the analysis was harder. With the Masters in general, it’s felt harder to understand what they want from us, especially in the written work. I don’t know if that’s just part of Master’s level work or whether the difficulty is something to do with me and my Autism or ADHD. Either way, the constant uncertainty is exhausting. And even explained to me, I’ve still rarely felt confident about what I need to do to get a good grade. So assessment time is always a stressful time. But I worked hard and got through it with the support of my tutor and my friends and my Mum and now all that’s left is waiting for the results.
I also had some really exciting and fun opportunities come up during this module. They’re not over just because the module is but it would be remiss not to at least mention them when talking about the module. First of all I was chosen to be part of the judging panel for a songwriting competition, which has definitely been an experience and a half so far. I’ve learned a lot and, for the most part, it’s been really interesting and really fun.
The other exciting opportunity is a more academic one. There’s going to be a musicology conference in July focussed on starting to build a body of research on Taylor Swift as she’s such a phenomenon (in music, in pop culture, in business, etc) and there is very little research so far. We were invited to attend this (online) conference but also invited to submit research proposals, which, if accepted, meant speaking at the conference. As a major Taylor Swift fan, this seemed like a dream. So I got to work, wrote a proposal, and submitted it. And a few weeks later, I found out it was accepted so I will be speaking about Taylor Swift at an academic conference! I’m so excited, even if the idea of presenting alongside established and accomplished academics is more than a bit nerve-wracking.
Despite all of the changes going on in my life over the last three-ish months (managing my mental health, managing my chronic fatigue and pain, getting the ADHD and hEDS diagnoses, and just coping with all the stress of the pandemic), this is the most I’ve felt like myself in months – in over a year, I think. All the writing has been really good for my mental health and I feel like that and the classes were a very stable thing in my life, like a rock to cling onto in a really wild ocean. Somehow, everything about this module was exactly what I needed exactly when I needed it (apart from a few mishaps here and there). I learned so much and had so much fun; it was really good for my soul after a really hard year so I’m really grateful for these last three months.
A (Fairly) New Development: Chronic Pain
Posted on March 27, 2021
This post feels like it has been a long time coming but I didn’t want to post anything before I had more to say than ‘I’m in pain’ and, at long last, I do. But first, context: I started struggling with chronic pain about halfway through the first UK lockdown, early last year, and it’s been really, really tough. But recently I finally got some answers and started to get some support. And while it’s not a journey that’s over – if that’s even a possibility – I’ve come far enough that I feel like I can talk about it with a certain level of knowledge and emotional distance. So, here we go…
It started out as sporadic pain in my left hand and arm. I’ve experienced this on and off before, due to my extensive writing and my compulsive hair pulling, so I wasn’t overly concerned. Waking up to my hand being numb and tingly was unusual and a bit unnerving but given how much I was writing and how much hair I was pulling out – both of them being outlets for stress – during that first lockdown, I figured that I was just straining that arm a bit more than usual and that it would probably go back to normal as my anxiety decreased.
But then I started developing an ache in my left leg. I don’t really know how to explain it but it felt like it was coming from somewhere deeper than the centre of my leg, deeper than was physically possible. And then what started out as a painful but sporadic ache turned into attacks of debilitating pain, like electric shocks shooting through my leg at random. They were (and are when they still happen) excruciating and had me collapsing on the floor every time, sobbing or even screaming. There were a few so bad that I ended up hyperventilating so hard and long that I nearly passed out. And if that wasn’t bad enough, both the ache and random electric shock attacks spread up to my lower back. None of the common painkillers did anything and I was living in constant fear of the pain hitting me with no warning.
Eventually I was prescribed painkillers but I could only take them for a few days at a time to avoid their addictive nature. They actually – FINALLY – helped; it was such a relief. But the days in between were miserable and the painkillers I was taking in between was barely making a dent. I was also referred to Rheumatology at the hospital.
That was in May (of 2020) and I had to wait until December for an appointment. While, objectively, I can completely understand that, given how overworked hospitals are due to the pandemic, the waiting was also horrendous: I was in constant pain and desperate for help. It was hard to be patient, especially when it was affecting my education because the pain was so bad that I could barely play any of my instruments. It was a really hard time, and that was without all of the COVID-19 and other life stuff.
Eventually the appointment arrived. We didn’t learn much but it got things moving. The hypermobility diagnosis was confirmed and the possible diagnosis of Fibromyalgia was dismissed. I was referred to various departments, including Occupational Therapy, Hydrotherapy (although the consultant wasn’t sure when it would be available due to the pandemic), and, after discussing multiple different medications (many of which I’ve already taken and had negative reactions to), Pain Management. The consultant recommended I have an ECG every five years or so as heart problems can occur with connective tissue disorders and booked my first one for me, as well as an MRI, just to double check my back. She said we’d have another appointment in three months, after the ECG and MRI (it’s been more than three months at this point but I’m hopeful it will be soon since I’m still in a lot of pain).
After the wait for that appointment, I was expecting to wait for ages but we received a call about the MRI less than a week later. The woman who arranged it for us was really thorough and really aware of what might be helpful for me as an autistic individual, suggesting and putting in place so many things to reduce any of my anxiety; for example, I could have Mum in the room with me, I could play music, I could hear the sounds the MRI made before getting in it, she suggested taking Diazepam first, and so on. So that was really helpful. Surprising (I don’t think that’s ever happened before an appointment or procedure before) but very helpful.
The MRI itself was actually a really interesting experience. It was completely manageable and I actually found it quite soothing in a weird way. And, of course, my musician brain couldn’t help but wish I could sample the different sounds the MRI made to use in various tracks. It was over pretty quickly and the whole process was super efficient. I really want to see the images; I don’t know if she’ll bring it up but I’m gonna ask the consultant if I can see them at the next appointment. I’m weirdly intrigued. I mean, I’ve always been kind of fascinated by how my body works specifically (seeing my brainwaves was super cool, for example, and one day I’d love to see images of my brain) so I’m just really curious about what my spine looks like. Like every other spine, I’m sure, but I’m still curious.
(Throughout this time I had been swimming where possible – according to what felt safe and as lockdown allowed – and I’d started incorporating the basic hydrotherapy exercises that the hypermobility specialist had recommended.)
I was prescribed a new daily pain medication but I didn’t really feel like it helped (and I’m still not convinced that it’s actually doing anything helpful). The only thing that helped – and still the only thing that helps is the painkiller that I can only take for a few days at a time; it’s the only thing that has consistently given me pain free periods of time. But, as I said, I can only take it for a few days at a time and the other days are pretty awful.
Around New Year (2020-21), I noticed that the pain was spreading and by the end of January 2021, I was struggling with pain from my toes all the way up to my neck. I rarely experienced pain in my whole body all at once but it had reached a point where there was practically no area of my body that didn’t experience this specific type of pain and often for extended periods of time. My hands, arms, lower back, and lower legs were the worst.
I began Occupational Therapy in February for the pain in my hands. The therapist gave me compression gloves (I have tiny, skinny hands and so they turned out to be too big and I had to buy a smaller pair) and a series of ‘gentle’ exercises that would supposedly allow me to control the hyperextension in my fingers. Right from the start they were painful and I had to drop one of them straight away; it just hurt too much. But I worked hard at the others, whilst simultaneously trying not to work too hard and accidentally regress.
The therapist also discovered that the Pain Management referral hadn’t gone through and put a rush on it – apparently, because the pain is directly affecting my education, I should move me up the waiting list more quickly than if I wasn’t currently doing my Masters. So I guess that’s good news. Hopefully it makes up for the time lost with the referral not going through. She also had some suggestions around swimming during lockdowns, which unfortunately didn’t come to anything but it gave me hope and it was something to work on. That was better than just waiting.
In the following OT session, we talked about the pain caused by the exercises and she reduced them to every other day, which has been better, but I’m still in pretty much constant pain to some degree. But she was pleased with the progress I’d made. Unfortunately though, she thinks I’m probably in the group of people that take the longest to see real change. That’s not massively surprising to me – I’ve been in similar positions before – but it’s still frustrating. Like, out of all of this stuff, couldn’t one thing not be super hard? Couldn’t one thing have the best possible outcome? Anyway. It’s pointless to speculate about that stuff; it’s not like I can change it.
I’d been doing some research on hypermobility but as far as I can tell, it’s a symptom rather than a condition or disorder, like Joint Hypermobility Syndrome or Hypermobile Ehlers-Danlos Syndrome. And since only ‘hypermobility’ had been mentioned up to that point, I asked what my actual diagnosis was and after some conferring between the various people involved, they agrred on a Hypermobile Ehlers-Danlos Syndrome, which explains both the chronic pain and the chronic fatigue (I don’t know what this means for the Chronic Fatigue Syndrome diagnosis – at some point, we’re all going to have to sit down and work out which diagnoses are still relevant and which are now out of date), as well as multiple other problems. So there was this huge rush of relief and that lasted several days before I just felt overwhelmed. It’s an experience I’ve had before: finally knowing is amazing but then the reality of it all sinks in and it’s just a lot to process. Life is suddenly different. It’s not what you thought it was. So, yeah, it’s a lot. I’m sure you know what I’m talking about if you’ve been through a similar experience. But I’m getting there. The dust is starting to settle.
We’re still waiting on some of the other things, like the Pain Management referral and the second appointment with the Rheumatologist. And I’m continuing with the OT; I’ll be graduating to a new set of exercises soon. I’m also super excited to swim again when it becomes possible. We’ve already got several slots booked at our favourite pool. Plus, I’m due to get my first COVID vaccine soon, which will make me feel safer about swimming, even at this pool that takes the safety precautions so seriously.
So this is where we are. As I said, I didn’t want to write this post until there was a natural stopping point in the writing of it. And this seemed to be that moment: we have the beginning, the diagnosis (or diagnoses), and now we have the treatment. Obviously that’s ongoing and there are still different areas to pursue for support. So, I guess, all we can do now is see how things go and hope the pain improves.
Finding Hope 