Posted on January 23, 2021
Back in October 2020, I had a long overdue blood test. I think it was actually supposed to be the test that told us whether I’d absorbed and responded properly to the iron infusion I’d had in June 2019 but with starting the Masters and then the pandemic, it had only just become possible.
Going out and going to the Doctors’ Surgery did cause me a lot of anxiety – I’m still struggling with going out and with feeling very vulnerable when I’m out – but the appointment felt very safe and very efficient. I was probably in and out in less than ten minutes. About a week later, we got the results back and my iron was within the normal range. So all good there. However, my Vitamin D levels were seriously low, so low that they wanted to take immediate action. I was prescribed Colecalciferol, a prescription Vitamin D supplement, and instructed to take one a day for ten weeks.
It wasn’t surprising to hear that my vitamin D was low. It’s not uncommon for autistic individuals to have low vitamin D levels and with the pandemic and lockdown, I was staying inside a lot more and therefore not getting as much sunlight as usual, let alone the sunlight I needed. So I wasn’t shocked. I was pretty wary about taking supplements though: my last attempt with supplements had rendered the anti-depressants I was taking at the time completely ineffective, leaving me in a deep, dark hole of depression. Even though I stopped taking the supplements immediately, the anti-depressants never worked again. So I was concerned that something similar might happen again and I’d lose the only consistent (and I use that word loosely) anti-depressant I had in my toolbox. But my doctor explained just how important it was to get my vitamin D up and despite my anxiety, I committed to taking them.
For the first three weeks, I didn’t feel any different. My sleep was as sporadic as ever and I was constantly tired, something that is very much linked with my anti-depressant medication but is also a symptom of a vitamin D deficiency. Week four passed and I still didn’t feel any change but my Mum felt that there had been a slight shift, in my day to day behaviour and my engagement in whatever I was doing. She couldn’t quantify or qualify it any more than that but she did have a feeling that something was slightly different. I was reluctant to believe her, not feeling it myself.
Weeks five and six were tough: I was constantly exhausted and incredibly depressed, although it wasn’t always noticeable, covered up by anxiety-induced busyness. I was sleeping a lot but I was still tired but by the end of that sixth week, I was starting to wonder if I felt different. It’s just so freaking difficult to tell when the change you’re watching out for is so gradual. I wasn’t sure, just cautiously optimistic.
I’d been instructed to go back to the doctors’ surgery for another blood test between four and six weeks to see how I was responding to the supplement. It was closer to six weeks given some difficulty getting an appointment but when it finally happened, it was quick and efficient, just like the first appointment.
During what was the seventh week of this period, I was still tired and sleepy but again, I was starting to think that it wasn’t quite as bad as it had been. It wasn’t drastically better but I did feel a slight – intangible, I guess – difference. But week eight gave me a real sign that things were changing. I was still fatigued easily, still had days where I was really sleepy but I suddenly noticed that I wasn’t needing to drink as much Red Bull as I had been. Ever since I started this round of anti-depressants, I’ve been relying on Red Bull to keep me awake during the day and when the vitamin D first showed up as problem, I was probably drinking three a day – more when I was commuting to university (and yes, I’m aware that this isn’t healthy and have a plan with my psychiatrist to address it, although that has been derailed somewhat by the pandemic). But during week eight, I realised that I was getting through the day on one, sometimes less. Still not super healthy, yes, but a really good step in the right direction. And if I wasn’t feeling like I needed them as much to stay awake, then I had to assume that my energy levels were improving, to some degree at least.
When the blood test results came back, they showed that my vitamin D levels were back within the normal range but still pretty low so my doctor wrote me a new prescription for the rest of the winter with potential for extending it throughout the duration of the pandemic. I’m grateful for that; it’s one worry off my mind at least.
My energy levels still aren’t great. But getting my vitamin D levels under control was never going to be ‘the fix.’ Fatigue is a constant in my life, between my anti-depressants, Chronic Fatigue Syndrome, and other health (physical and mental) problems. But that doesn’t mean I can’t improve my situation. Getting my vitamin D levels back up has helped, hopefully hydrotherapy will help, perhaps the next anti-depressant won’t have such bad side effects (whenever I have time to try a new one – mid-Masters isn’t exactly the perfect time, especially having just reached the modules I’ve been most excited for). Sometimes I need to rage and cry about the pretty constant tiredness, but most of the time I can look forward and focus on the next thing that could help.
Posted on January 16, 2021
There’s something about new year that always makes me feel hopeful.
I think that many of us move through life as if it’s a story but in reality, there aren’t many clear endings and beginnings and so we often have to create them for ourselves. They help us make sense of things; there’s something helpful and healing about being able to put a difficult chapter behind you and start fresh. 2020 was a lot so I think it’s been good for a lot of us to create some mental distance from all that happened even though 2021 has already had some previously unimaginable moments.
As the events in Washinton D.C. have shown, we have no way of knowing, of course, whether things will be better, of knowing what is to come, but I still have to have hope for the next twelve months, for the future. I think that’s probably one of the most powerful tools we have in general, but also specifically in this period of time: the ability to have hope, even when what we’re facing feels so big and so insurmountable. If nothing else, there is always hope, something that these quotes remind me of.
“Hope begins in the dark, the stubborn hope that if you just show up and try to do the right thing, the dawn will come.” – Anne Lamott
“Hope is a choice of courage.” – Terri Guillemets
“The future is always beginning now.” – Mark Strand
“You can’t wring your hands and roll up your sleeves at the same time.” – Pat Schroeder
“People are made of flesh and blood and a miracle fibre called courage.” – Mignon McLaughlin
“But all I could think of was how when nothing made sense and hadn’t for ages, you just have to grab onto anything you feel sure of.” –
“Hope never abandons you, you abandon it.” – George Weinberg
“Tomorrow is fresh, with no mistakes in it.” – L.M. Montgomery
“Keep a little fire burning; however small, however hidden.” –
“While the heart beats, hope lingers.” –
“We have always held to the hope, the belief, the conviction that there is a better life, a better world, beyond the horizon.” – Franklin D. Roosevelt
“Hope rises like a phoenix from the ashes of shattered dreams.” – S.A. Sachs
“Learn from yesterday, live for today, hope for tomorrow. The important thing is not to stop questioning.” – Albert Einstein
“The present is the laboratory of the future.” – James Lendall Basford
“When you’re at the end of your rope, tie a knot and hold on.” –
“They say a person needs just three things to be truly happy in this world: someone to love, something to do, and something to hope for.” –
“Where there is no hope, it is incumbent on us to invent it.” –
“The best way to not feel hopeless is to get up and do something. Don’t wait for good things to happen to you. If you go out and make some good things happen, you will fill the world with hope, you will fill yourself with hope.” –
“We need hope, or else we cannot endure.” –
“There is a crack in everything. That’s how the light gets in.” –
“The birds of hope are everywhere – listen to them sing.” – Terri Guillemets
“And in today already walks tomorrow.” – Samuel Taylor Coleridge
“May your choices reflect your hopes, not your fears.” –
“Hope was tricky like water. Somehow it always found a way in.” –
“Hope is a force of nature. Don’t let anyone tell you different.” –
“There is hope, even when your brain tells you there isn’t.” –
“Sometimes good things fall apart, so better things can fall together.” –
“Let your hopes, not your hurts, shape your future.” – Robert H. Schuller
“Hope is the silver lining of dreams.” – Terri Guillemets
“Once you choose hope, anything’s possible.” – Christopher Reeve
I hope that reading these has given you some hope, just like they’ve given me. As I said, none of us can say for sure whether this year will be better than the last but we have to have hope. And we have reason to hope: Trump is leaving and Biden will be inaugurated; the COVID-19 vaccine is being administered around the world; people have come together, both in the wider sense and in the smaller, more local sense, something that will hopefully continue; the new year is an opportunity for a fresh start… And those are the most obvious things. 2020 was a year unlike any other most of us have experienced and I have to hope that 2021 will be better. I don’t think I – we – have any other choice.
Posted on January 9, 2021
So that’s it. The third semester of my Masters is officially completed. As I write this, I have just submitted my assessment work and have a week before the next semester starts (online, due to the current number of COVID cases). I have some reading to do for the next module but before I dive into that, I just want to reflect on the last semester, the ups and downs, and all that I’ve learned.
It began with a great deal of stress, and long before the semester was due to start. At the beginning of the pandemic, I’d said I absolutely didn’t want to do my course online and would defer if that was going to be the case. But as the new semester drew closer, I got more and more anxious. I didn’t want to defer but I also didn’t feel safe commuting to and then through London for two hours of classes a week so, after many hours of talking with my family (and many tears), I decided that the best option was to attend as an online student. It was a sad decision to make because I’ve always loved the group dynamic of my university classes but it just didn’t feel safe or responsible to attend in the way I’d have to.
And then, in the week or so before classes started, there was a great deal of stress around getting the right timetable as an online student: conflicting information, the classes not showing up on my online timetable, and so on. When things were already so stressful (the anxiety about the pandemic aside, I was really nervous about whether or not I was mentally up to doing the module with my mental health so fragile), this just triggered a series of really terrible meltdowns. It was a horrible and exhausting way to start the semester, especially the one I’d always been most anxious about: Musical Language in Songwriting. Music theory has never been a strong area of mine so the idea of experimenting with these concepts was very daunting.
While this was very distressing, I don’t want to point fingers or place blame. These are hugely difficult times and no university – no institution – is perfect, even when the world is running according to what we consider to be normal. So it’s not fair to expect everything to run smoothly. And now that I’m on the other side of the semester, I can only sing the praises of my tutors: over and over, I’ve seen just how dedicated, hardworking, passionate, and supportive they are. There have been bumps in the road, of course, but even with the sheer amount of stress they’re under – and that’s just the stress I’m aware of as a student – I’ve been consistently met with warmth, thoughtfulness, and understanding. And I’m just so beyond grateful for that. I couldn’t have completed this semester without their support.
I wrote about my first week back (here) but to summarise, it was a challenge. My uni were using a blended model of teaching so the lecture was online and the workshop was onsite (but as an online student, I was looped in through the online learning platform). The lectures were straightforward since we were all online, and productive once we got into a rhythm and stopped accidentally interrupting each other. The workshop, however, was more complicated: between not physically being there and only being able to communicate through the tutor’s laptop, plus not being able to see or really hear my course mates, it was very difficult. But I spoke to my tutor after the class and the next workshop was better.
I’d thought we were making progress but then suddenly, between week two and week three, I was moved to a new workshop group, an online group made up of just the online students. That really threw me; the constant uncertainty was doing a real number on my mental health. I was really struggling during this time: my anxiety over the pandemic, the expectations of the course, and being able to do well in the module was incredibly high; I was hugely frustrated with the whole situation; I was feeling overwhelmed by my depression, my low energy levels and side effects of medication… I was constantly in tears, constantly having meltdowns.
But slowly, as things started to settle, my mental state started to settle too. I had a really positive meeting with one of my tutors where he went through the learning outcomes and grading criteria and generally what makes a good assessment portfolio. I’ve found that having a meeting like this early on in the semester both helps me to work on the assignments more effectively and avoids unnecessary anxiety. As I said, I felt really supported throughout this module and I’m so grateful for that, both in terms of the module itself and in terms of the broader picture.
The assignments were challenging and definitely interesting, including a reimagination of a cover, a reimagination of an original song, and a brief that still makes me shudder: a song in an uncommon mode, using both 5/4 and 7/4 time signatures, with extended chords and an example of chromaticism (I struggled particularly with this one). We also had to consider the arrangement of each songs and to an extent, the production. The briefs definitely stretched me and prompted some very interesting songs, many of which I absolutely wouldn’t have written if I’d not done the module. I don’t know if I’ll ever do anything with them but I definitely learned a lot from writing them. Having said that, I did spend a lot of time feeling very unsure of myself and the quality of my work, both in terms of whether they were actually good songs and whether they were fulfilling the grading criteria.
About halfway through the semester, my course mates from the year before (those who’d done the Masters full time and completed it in one year rather than two) graduated and I joined them for the online ceremony to celebrate them and their achievements. We were all disappointed not to be able to get together to celebrate properly but hopefully that plan is simply postponed rather than cancelled. They all deserve it and it would be so lovely to see them again.
Six (out of twelve) weeks in, I was exhausted all the time. I was also still struggling with the nerve pain in my hand – the pain that I’ve been experiencing since the middle of the first lockdown – which was only getting worse, making it even more difficult to play instruments. I was still waiting for my rheumatology referral – that didn’t come through until the last week of the semester and even now, they still don’t know what the problem is.
The latter half of the semester was much more focussed on the assessment, at least it was for me. I worked on the songs I’d already written during the module before taking them into class again for more feedback so that I could get them as good as possible for submission (although I did impulsively write a rap that ended up being part of my portfolio). I also worked on the other part of the assessment: a short essay, analysing one of the songs I’d written and how I’d employed different aspects of musical language. I worked as hard as I could, determined to have at least most of the work done by Christmas so that I could have a break of some kind before the next semester started, unlike last year when I had to work straight through the Christmas break.
Despite the meeting early in the semester, I found it very difficult to judge whether I was doing ‘well enough.’ The learning outcomes and grading criteria felt incredibly vague and therefore not at all Autism-friendly, causing me a lot of anxiety. I mean, it’s Masters level and they have to cover all of the different styles of songwriting on the course so I do understand it but as an autistic person, it’s been one of the hardest parts of the course (uncertainty being a common area of difficulty for autistic individuals). I had multiple conversations with my tutors about it and although they noted it, it’s not like they could change them in the middle of the semester. I guess we’ll see if anything changes over time. I did get useful feedback on my songs and essay during those conversations but I still have no idea what to expect grade-wise.
By the end of the semester, I was almost done: I was making final edits to the songs and trying to cut down the word count of my essay. But the last week was hectic to say the least. I had a really lovely last day of classes – both groups I was a part of were so positive and fun to be a part of – and then a final one-on-one session with my tutor for any last feedback before the deadline (the first day after the Christmas break). That was really useful, especially as I was so close to finishing everything. I also had a meeting with my tutor for the next semester, so that I could prepare for it or, at the very least, get my head around what the expectations of the module were. Again, another attempt at reducing unnecessary anxiety, plus it was really nice to see him again; he’s taught me on and off since my first day on the BA (he actually auditioned me for the BA!) and he’s such a great teacher. I feel like he gets me and my approach to songwriting and I’m really excited to have him as a tutor again. And the semester itself ended for me with a meeting on behalf of ICMP where a group of us (students from different courses) spoke about our experience with the university. That felt good; I only ever want to leave things better than I found them and that meeting felt like an opportunity to do that. It’s re-inspired me to keep trying, even if I didn’t really need to be re-inspired.
I had one last session with Richard, sorted out a couple of technical issues with the tracks, and then I spent every day working non-stop. On Christmas Eve, I managed to finish everything. I was done – or had done as much as I could do without endlessly obsessing over every tiny detail – and could have an actual break between semesters. I really needed that and I had a good Christmas, despite everything going on. I wish I could’ve been with more of my family but we all recognised how risky that was. So we had a truly bizarre and hilarious Christmas Quiz and Zoom call and then dinner within our bubbles; it wasn’t perfect but I think we truly made the most of it and I really enjoyed it, even if there were difficult moments.
After a pretty restful break, I logged onto the student gateway to upload all of my work on New Year’s Day, several days before the deadline. But, for some unknown reason, the pages weren’t set up in a way that allowed us to upload the work required for the assessment. I had multiple meltdowns over it and after a handful of emails to various tutors, I was given an alternate way to submit. I shouldn’t really be surprised: this has happened multiple times and with the deadlines always on the first day back, there’s usually no one to contact for help. I was lucky to have had a tutor respond. Fortunately, it did get fixed on the morning of the deadline and we were all able (and asked) to submit. They usually fix it in time but it’s very stressful every time.
As I’ve already said, I’d been dreading this module but I ended up enjoying it a lot than I’d expected. It was still stressful but the tutors were incredibly supportive and my course mates were engaged and encouraging. It felt safe to bring in whatever I’d written, even if I really wasn’t sure about it (the rap, for example). It is hard being part time though, just as much this year as it was last year: for me at least, I’ve always felt ‘other’ to a certain degree, excluded (unintentionally) from the main group, the full-timers. Rather than being part of two years worth of Masters students, I’ve just felt not quite a part of either. It’s hard to explain but I’ve just never felt truly part of the course, like I’m always missing out on something because I’m only there (or ‘there’) half of the time. Does that make sense? I’m not even sure. Being part time has definitely been better for my mental health but it has made things more complex socially.
But ultimately, the module has been a good experience (although I’m sure my perspective on it will be affected to a certain degree by the grade I get). I think the biggest thing I’ve learned, or the skill that has developed the most, is how my decisions serve the song I’m writing; it’s made me much more conscious of my choices and it made me realise how much I already knew about the techniques we were using but just using them instinctively rather than deliberately. So that was surprising but it has opened up doors in my songwriting.
It was also exciting to start looking ahead to the next two modules: we had extracurricular sessions where students from last year presented their final projects to give us an idea of what that last module would be like. It was reassuring because it made the whole thing feel much more clear and less like a huge, intangible, overwhelming pile of work. Now it feels like an exciting challenge and I can’t wait to get started, regardless of the stress and anxiety involved.