Happy Birthday, Claire

TW: terminal illness and death.

Today is what would’ve been Claire Wineland’s twenty-fifth birthday and even though she died in 2018, I still think of her often. I wanted to do something for her birthday and since I hadn’t yet watched the documentary about her that was released after her death, I decided it was time to watch it, even if it would make me cry (not much of a spoiler: it did). She was an incredible person and it breaks my heart that she’s no longer here, that she didn’t get the chance to live a life she fought so hard for and saw so much potential in.

As I said, I wanted to honour her birthday so I sat down and watched the documentary; here are some of my thoughts…


It’s a beautifully made documentary and a beautiful tribute to Claire and the message that she dedicated her life to sharing with people. You get a real sense of her: she’s so articulate and eloquent but she doesn’t take herself too seriously (and ‘Little Claire,’ as she refers to herself, is so cute). So much of what she said was so poignant and moving and, as always, I felt deeply inspired by her words. It also gives you real insight into what living with Cystic Fibrosis is like, as much as you can as someone on the outside, and while her experiences are very specific to Cystic Fibrosis, I could also see a lot of broader parallels as a person with multiple disabilities.

I found the second half (approximately) especially emotional because I remember experiencing it in real time: watching her videos, donating to her gofundme and watching the total rise and rise, watching her live on social media when she got the call from the hospital for the transplant, waiting for news, and then finally hearing that she’d died. I remember it all so vividly. And seeing the video about needing new lungs now, hearing her say, “There’s so much more I wanna do,” makes me so deeply sad because everyone was so hopeful throughout the transplant process but then, suddenly, it was over and Claire was gone. There was so much she wanted to do and she truly saw how much she could do in this world and she didn’t get the chance; that still makes me so very sad.

The montage at the end was gorgeous and the ending was perfect. As I said, it’s beautiful and I feel like, as familiar as I was with Claire’s videos and therefore her approach to life and so on, I walked away from the documentary with a better understanding of her and her message.

There are so many great quotes throughout the documentary but here are a few that stuck out to me…

  • “The truth is: people who are sick, people who have suffered have something beautiful to give to the world. So, for me, it was really important to see people who were sick who were thriving… It’s important to have people who are sick who are actually living full lives so that kids like me, like Little Claire, doesn’t have to feel like all there is in the world is being someone’s pity case. You know, that there’s a life for her to live. And that it’s going to be wonderful.”
  • “Innovation doesn’t happen because there’s some person who’s in a great circumstance and everything’s going well and they just get on a roll and they make something for the world. Innovation happens, art happens, because of suffering.”
  • “We’re all just trying to not feel so alone and to feel like we have something that is worth giving.”
  • “There’s this notion that we go through life with that, if we’re just better… If we just do more, if we just fix ourselves more, if we become better people, if we get healthy […] Once you’re healthy, then you can live your life. Once you’re healthy, then you’ll be happy. Once you’re healthy, then you’ll be okay. And we all go through life like that, not just sick people… all of us. Like, once we’re rich we’ll be okay; once we’re in love we’ll be okay; once we have a family, we’ll be okay. Health itself is never gonna make your life better but for some reason, people don’t wanna frame it that way. If I was to sit here and say, ‘money doesn’t equal happiness – it’s what you do with the money,’ you’d be like, ‘Yeah, completely.’ But if I was to say, you know, ‘being healthy doesn’t matter – it’s what you do with the health…’ People don’t like hearing that necessarily.”
  • When talking about her near death (and actual death) experience: “And after the terror left, there was this grief, you know? Like, I grieved how much potential there was in me and how much of that I didn’t utilise in the time I had. And I grieved it. It wasn’t fear. It wasn’t, like, ‘Oh god, I don’t wanna die.’ It was, like, ‘Wow. There is so much that a human being is capable of doing and I won’t be able to do that.'” [This moment made me cry and seeing that the memory moved Claire to tears as well made me so incredibly sad and touched that it was something they shared with us; it was very moving and had a big impact on me.]
  • “For me, what purpose really meant was changing the conversation around someone who’s sick where they have to wait and wait and wait until the day that they’re healthy before they do anything, to this notion that I could be exactly who I was in the moment with all of my mess ups and my failures and my pain and my complications, that I could be a sick person and still have something to give, still have a life worth living.”
  • “Ever since the time I was a kid… and I think everyone has this experience… you’re taught that someone else is gonna do it, there’s someone else who knows more than you, someone else who can do this better, you’re not there yet, you’re not ready. And I realised that I can’t spend my entire life waiting for someone to give me permission to live a life that I’m proud of.”
  • “I think everything good in my life has come from my sickness and that’s a terrifying thing to admit to someone because then, you know, what else is there?”
  • “There is a really fine line between wanting something because of what you can give with that thing versus wanting it because you think it’s gonna make life better.”

I will also be making a donation to Claire’s Place Foundation as well. Claire had a profound effect on my life and I want to pay that forward. I’ll never been able to thank her for how she’s helped me but I can do my best to follow the example that she led by, to follow the message that she embodied.

I really recommend watching this documentary, especially if you or someone close to you is living with a serious illness or disability. Having said that, it’s very emotional so please take care of yourself if you’re going to sit down and watch it.

I’m sending all of my love to Claire’s loved ones, especially today.

2021 in Review

I’m not really sure how to sum up this year. It has been one of extremes, to say the least: anxiety, joy, stress, excitement, depression… And, at this point, I feel a bit like I’ve run out of capacity. For anything. So this was a hard post to write and it wasn’t helped by the dichotomy between most of the year and the last few months; I’ve found it very hard to look at each part without the other colouring it in some way.


The biggest part of my year was most definitely the final two modules of my Masters, which turned out to be my two favourite modules of the course, The Writer’s Voice and Major Repertoire Project. Having written about these already, I don’t want to repeat myself but I do want to look at them in the context of the year. From January to September, I wrote furiously and with such joy. There was anxiety and depression and stress – they were all in there – but it felt like all of that writing balanced the scales. I wrote so many songs that I love, that I’m so proud of, and that I can’t wait to release. While I did release new music this year – The Honest EP (Sunburst Sessions) – they weren’t new songs and I’m so excited to share new songs. I have lots of plans that I’m really excited about and despite the chaos of the last few months, I have been working on my next project. I’m very excited to share it in the new year.

I’m very proud of myself for completing the Masters, especially given that I did most of it during the pandemic, and I’m so proud of my final project; it is the best thing I’ve ever done and I can’t wait to get it out into the world. I poured everything I had into that project so getting such a high grade and then the Outstanding Student Award at Graduation felt really good. I feel weird talking about it but I am really proud of that achievement and the recognition of how hard I worked means a lot to me. Because of an administrative screw up, I’m not sure when my graduation will be official, when I’ll get my certificate – something that caused a lot of distress – but practically, it’s done.

My health, both physical and mental, hasn’t been in great shape this year. The chronic pain was really bad, the fatigue not much better, and the ongoing migraines are pretty miserable. My mental health was fairly stable and actually not too bad for the most part, until the last few months of the year. Then it got really bad. In order to try medication for my ADHD, I had to come off Phenelzine – the only medication that’s ever helped me – and then start Xaggitin. That went extremely badly. My depression all but overwhelmed me; it was the worst my mental health has ever been. I’ve stopped taking the Xaggitin and I’m taking Bupropion now and it’s different but I’m not sure if it’s any better though.

I’ve felt very alone this year, in regards to tackling and managing all of this. I came out of every appointment feeling angry, distressed, dismissed, or invalidated (and often multiple of these in various combinations). I haven’t felt safe with any of them; I didn’t feel like my existence even registered with them. So I’m finding all of that very hard and each new appointment is preceded by extreme anxiety, a kind of anxiety I’ve rarely experienced. It’s a bit like a fight or flight response. I’ve never had a great relationship with the medical profession but I’ve felt particularly let down this year. I have finally managed to get back to therapy (although this was before the newest variant threw a wrench in all of our plans) but it’s been a long time and a lot of stuff has happened; I feel like I’m having to learn how to do it all over again.

It’s also been a hard year, family wise. I haven’t been able to see one of my parents – in real life – since before the pandemic (for medical reasons) and that has been so hard. We talk on FaceTime and stuff and that’s good but I still miss her so much. And then, of course, my Granny died in September, just as I was finishing my Masters. At that point, I think, my brain just couldn’t take anymore; I don’t think I’ve processed any of it, to be honest. To a certain extent, I feel frozen, like I stopped while everything around me kept going. It’s not the first time I’ve felt like this but that doesn’t make it any easier. I’m sure all of those feelings will make their presence felt in the new year. But as hard as all of that is, I’m so grateful for the friends and family around me; I’m not sure where I’d be without them.

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“What a surreal year. I don’t even know how to sum it up really. Everything I felt, I felt in extremes: stress, anxiety, depression, joy, excitement. I wrote songs that I’m so proud of, I hugged friends I hadn’t seen in months, I completed a Masters degree that I loved. I struggled with even more health issues, I was almost overwhelmed by the worst depression I’ve ever experienced, and I’m learning to live in a world that doesn’t have my Granny in it. The high points were so high and the low points were so low and I’m honestly exhausted right now. This year has been more than I know how to handle and I’m still kind of drowning but I’m also still here.” (x)


This end of year post isn’t quite the same as what I’ve done in previous years but it’s been a weird year and I wouldn’t be surprised if I’m experiencing some form of burnout. I have a few plans but honestly, I have no idea what the next period of my life looks like and that’s scary. I hate how my life goes on hold whenever I change medications and I feel more than a bit lost right now. All I can do is wait and see and after all these years, there’s very little I hate more.

Migraines, Tooth Pain, And Blood Pressure Monitoring

So often in my life it seems, medical stuff is like waiting for a bus: weeks or months go by and then suddenly a whole slew of them show up. And that’s certainly been true of the last few months. Just as the final module of my Masters was starting, I was hit by a series of awful migraines, suffered with terrible tooth pain, and spent twenty four hours hooked up to a blood pressure monitor, a test ordered by a neurology unit in London. So it’s been a pretty hectic time…


MIGRAINES

At the time of writing this, I’ve lost approximately half of the last forty days to migraines.

I’ve had migraines before – maybe a handful a year, depending on my stress levels and the medication I’m taking – but they usually only last for a day or so before fading away. They’re not pleasant but they weren’t seriously impacting my life. But then I had one that lasted roughly four days and I ended up in A&E because, having fairly recently had the Astra Zeneca vaccine, my doctor was worried about the extremely rare side effect of a blood clot. I was sure it was a migraine but agreed to go and after most of the day there, I was released; the doctor agreed that it was most likely a bad migraine but told me to come back if it didn’t go away. And after another day or so, it did. While I was somewhat irritated about losing a day that should’ve been spent working on my end of semester assessment (despite the pain, I was pushing myself to work on it as I could, in the moments where the painkillers actually worked – I think that’s mainly why it went on so long personally), I am really grateful to all of the hospital staff. They were all great – warm, considerate, and personable – despite the somewhat alarming COVID precautions everywhere that weren’t exactly great for my anxiety. But they were really kind and gentle with me throughout my visit, making the whole experience a lot easier than it could’ve been.

I’d thought that that was it. But then, again and again, I was hit by migraine after migraine, all lasting unusually long periods of time (for me, at least). They were averaging out at about six days each time, sometimes more. That was extremely stressful, bearing in mind that I’m at the beginning of the homestretch of my Masters with this final module accounting for 60% of my final grade, and I was utterly miserable from the pain. I was also so light sensitive; at one point, even the darkest room in the house felt too bright and I dissolved onto the floor in tears, which only hurt my head more. It was awful. That was the first time we called 111 and they called paramedics. That time they determined it was, again, a severe migraine and recommended two other pain medications to try in the hope that they’d be more effective than Nurofen.

A couple of migraines later, with minimal help from the new painkillers, I had another really bad one, which had us calling 111 and they sent paramedics (both such lovely guys who fell in love with the cats and talked musicals with me while they did their tests). This migraine was slightly different: it had all of my normal migraine symptoms but I also had this almost blinding pain at the front and right side of my face. They thought it was probably a migraine but suggested talking to my doctor about having a CAT scan and/or whether there was something going on with my cranial nerves. They also had some practical, experience based advice around pain relief (one of them had personal experience with severe migraines). They said they could escort us to the hospital on the off chance that a doctor would do a CAT scan but did acknowledge that they might just take blood and keep me there while it was checked again, like my previous visit to A&E. So we chose the second option: Mum was going to go out and get the new medication option and call my GP ASAP.

TOOTH PAIN

That was the most recent migraine (at the time of writing this). As time passed, the pain in my head started to decrease, then my face, settling in my back-top-right teeth; every time they – and finally just one (after about a week) – knocked against the bottom teeth, the pain was so bad that my entire body would freeze up.

As soon as it had settled in my teeth, we’d called the dentist and they brought me in as an emergency (a few days wait rather than a few months). The dentist checked, took x-rays and saw some decay in the painful tooth, fairly close to the nerve root, and it already has a pretty big filling in it. At one point, somehow, the hEDS diagnosis came up (I was diagnosed since my last dental appointment) and the dentist said that she’s seen and heard about multiple people with a form of EDS (or who were later diagnosed with it) struggle with tooth decay, as well as being scolded by their dentists for not doing a good enough job with their dental hygiene even though they actually were; it was often the EDS causing problems, not necessarily their actions. This really is the diagnosis that keeps on giving (imagine a sarcastic snort at the end of that sentence).

Anyway, she diagnosed an abscess and gave me two treatment options: extraction or root canal therapy, which would involve multiple, multi-hour sessions that would be painful, ultimately might not work, and probably wouldn’t last into my late thirties. The whole thing felt pretty overwhelming and I ended up in tears. Extraction was the obvious choice as far as I was concerned and everyone else agreed; there seemed to be way too many downsides to the root canal option (plus it sounded horrendous and I find dental work, even fairly straightforward stuff, very distressing) and even if I was inclined to choose it, it’s the worst possible time given the end of my Masters. Even an extraction is going to be a significant disruption. I’m applying for extenuating circumstances, which both my supervisor and module leader have encouraged, so hopefully that’ll mean I end up with the same amount of time to do the work as everyone else.

So, I’ve been referred for an emergent extraction under general anaesthetic but I don’t know when that’s going to happen. They also prescribed me some antibiotics for the mean time. Now it’s a waiting game. But several days after the appointment, either the antibiotics are working or the nerve is dying or both because the pain is getting better and I feel more human. There are periods of time where I can actually ignore it, which is a huge deal considering how much pain I’d been in. So that’s definitely something to be grateful for.

BLOOD PRESSURE MONITORING

A couple of months ago, I had an appointment with a doctor from a neurology unit in London, which I believe I mentioned in this post. After spending most of the appointment vehemently telling me there was no point in getting any tests, he somewhat reluctantly offered to write to my GP, suggesting I have my blood pressure monitored for twenty four hours. It took forever to get a monitor from the hospital but finally test day came.

I had to go to the hospital where they fitted the monitor (found the right size for my arm, wrapped me up, made sure it was taking readings, looped the cable behind my neck, and used the tie from my coat to secure the monitor/data recorder around my waist) and gave me the instructions and paperwork to go along with the monitor. I wasn’t allowed to get it wet so I couldn’t have a shower while wearing it but since that’s when I usually get my blood pressure related symptoms, we devised a plan where I would go through the motions – with the shower on to create the heat and steam – so that it would still record whatever was happening to my blood pressure during a shower, as much as possible at least. The whole process was relatively stress free and the two women who sorted me out were great, warm and extremely competent but flexible to my needs. I’m really grateful to them for making it so easy.

All done, we headed home. It was a bit weird with the weight of the monitor, the too long cable getting caught on stuff, and so on but overall, it was fine. The cuff got very tight – tighter than I remembered them getting when you get a one off test – but it wasn’t a big deal and the rest of the day went on as normal. It was a bit of a struggle to get to sleep because I couldn’t get comfortable with the cuff on my arm but once I did get to sleep, the inflating and squeezing didn’t wake me up, something I’d expected to happen.

However, when I woke up, my arm was really sore. I felt like I’d been punched a hundred times in the same place, convinced the skin was bruised underneath the cuff (it wasn’t and no bruise ever emerged but damn, it was tender). I think the cuff had slipped in the night as well because I had several error readings on that second day.

I had my pretend shower and, as usual, felt shaky, dizzy, and lightheaded; having thought ahead, I’d timed things so that the monitor would be taking the reading right at the end of my fake shower. I’m intrigued to see what that reading says. That done, Mum helped me wash my hair, leant over the side of the bath; I had an online meeting and couldn’t bear the thought of doing that with unwashed hair. It wasn’t very dignified, especially with all the extra towels wrapped around me to keep the monitor dry, but it got the job done.

I wore it for the rest of the twenty four hours and then, with great relief, unwrapped the cuff. By the end, my arm felt really sore from the squeezing, plus it had started to pinch in various places at some point. There’s also that Autism-sensory-thing of wearing something constantly constricting, which starts causing anxiety after certain periods of time, like a long day in skinny jeans or wearing my retainer all day. Does that make sense? The anxiety had been building for the last few hours and it was wonderful to take it off.

Mum dropped it back at the hospital, so now I guess it’s another waiting game. I don’t know when we’ll find out the results and the conclusions drawn from them. I assume that they’ll let us know at some point, although it wouldn’t be the first time we’ve had to chase results. As I said, all we can do now is wait.

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So, yeah, hectic. At a very inconvenient time. But that’s life and I’m determined not to let it spoil the last of my Masters and this project that I’ve been looking forward to for so long. I am going to make the most of every good day I have, take the extenuating circumstances gratefully, and continue working as hard as I can.