Introducing Claire Wineland

Posting on a Monday?! What?!

I know my posting schedule has gone out the window recently but I really want to share a couple of videos with you guys.

I’ve talked about Claire Wineland and her videos before and I’ve had this one bookmarked for ages. Claire is twenty-one years old and has Cystic Fibrosis (lots of useful information here). She’s spent most of her life raising awareness about CF and created her own non-profit organisation to support those with CF and their families. She’s incredibly wise and eloquent and even though we’ve had very different experiences of life and of health, I really relate to a lot of what she says. She’s inspired me a lot.

Just over a month ago, she was put on the transplant list for new lungs and she made a video where she talks about how that feels and what it means. And while she’s talking about transplants and new lungs and things that many of us don’t have direct experience of, the way she talks about living is universally relatable. And important.

“Transplant, for me, isn’t really just about getting new lungs. It’s not about being healthy, it’s not about fixing myself. For me, transplant is about what it means to choose to live, not in an ignorant way. I don’t believe that once I get lungs and once I’m better that everything else is gonna be better. I don’t believe that it’s gonna save me or fix me or make me any more of the person that I wanna be. I think that getting new lungs, for me, is like a representation for what it means to choose to be here, on this planet, and to just choose to try, to try to show up and be conscious and to be aware of ourselves and try and actually give something of ourselves, to not spend our whole lives just resentful of being alive, because it’s so easy to be resentful of being alive and I get it. I completely get it. It’s so hard not to fall in the trap of seeing that every single thing you choose to do in life, no matter which way you go and what you choose to do, there’s always just gonna be this… this innate pain in life, you know? There’s always gonna be someone or something that’s gonna come and yank the rug out from under your feet, no matter how healthy you are, no matter how rich you are, no matter how perfect your life may seem, or how much you’ve worked for what you have. There’s always something right around the corner that is going to come and make a fool out of you and that’s life. And it’s terrifying. And one of the things I’ve found that’s the most difficult about choosing to get new lungs is just… It opens up this well of want in me. Like, I want to be alive and I want to have the time and I want to have the energy to actually make something of myself, give something, like, make something I think is genuinely valuable, not just something to make myself feel better… I want to actually give something… and that’s really scary, because once you want something, then it opens you up to just that huge fear of failing. Like, the moment you admit that you want it then you have to admit that you don’t want to fail and you have to look at how painful it would be to lose it. So there’s just so many different layers to this. Like, it’s not just about lungs.”

The stuff about wanting to live and how scary that is really hits home for me at the moment, at this point in my mental health journey – I hate describing it that way because it sounds so quaint (and depression is anything but quaint) but I haven’t found a better word for it yet. Depression can make living feel like a struggle at best and unbearable at worst and I’m just coming out of the worst I’ve ever experienced. And knowing that someone in a different country, in a different situation, with a different life experience feels the same fear that I do… knowing that is comforting. It makes me feel less alone and it makes me feel part of something bigger than just me.

“It’s all very human, and it’s all very real, and it’s all very scary. And I have no idea what’s gonna happen.”

This video and these quotes have been in the back of my mind and on my list to write about for a while now. I just hadn’t gotten around to pulling this post together until Claire posted her most recent video on Saturday night.

I feel for her, so desperately, especially when she talks about how there’s so much more she wants to do. I can only imagine what this is like for her. It makes me so angry and upset that anyone should have to go through such stress while already dealing with such difficult circumstances: illness, treatment and medication, hospital stays, and so on. The gofundme link is here, in case you want to donate or share.

I just wanted to share her videos and her words with you guys. Her perspective on life and living has given me a lot to think about and hopefully it’s the same for you.

And Claire, just on the off chance you see this, thank you. Thank you for your words, thank you for making me feel understood even though you’ve never met me. Thank you for making me laugh and for making me cry. I’m grateful to be able to help, even if it’s in a tiny way and in a tiny amount. I have no doubt that you will continue to do incredible, important things.

A Need For Balance

In this video, Samantha Pena talks about her experience of OCD, what it’s like to live with it, and what she’s gained. Her experience is pretty different to mine but there are definitely parts of this that I strongly relate to, especially the intensity.

Here are some quotes from the video:

  • “It’s like being underwater for an extended period of time. You’re holding your breath and it’s scary. And without even thinking about it, your body naturally tells you that bad things will happen if you stay underwater. Your body tells you to fight to get out of that situation. That’s the way my body felt every time I touched something asymmetrically.”
  • “OCD is Obsessive Compulsive Disorder. It’s one of many anxiety disorders and it all starts with the obsessions. The obsessions are the recurring, uncomfortable thoughts and worries that lead to the compulsions. The compulsions are in response to the obsessions, attempting to satisfy them, and it becomes a disorder when your obsessions and compulsions take up so much of your time that you are unable to move through your day ‘normally.’”
  • “I avoid door handles because the cold metal sensation takes a lot for me to recuperate from.”
  • “Anytime I’m itchy, I’m twice as itchy.”
  • “An average day for me means avoiding thirty two different sections of lines on the ground, sixty fixes for any time anyone touches me or bumps into me, mentally preparing for a hundred and twenty four door handles, two hundred and seventy casual encounters anytime I have to touch something, and four hundred and twenty itches. In total, that’s nine hundred and six obsessive-compulsive thoughts that occur within one day. And that’s only symmetry related.”
  • “I was so anxious that it hurt. It was easier to deal with my [school] binders than to live my own anxiety.”
  • “I always mentally prepare for my day. I always have a plan. I even plan to plan my next plan.”
  • “There is an overall understanding within me that life has a need for balance.”
  • “I often hear the expression I ‘work better under pressure.’ I have OCD. I am literally always under pressure.”

The Only Make Up Tutorial That Matters

This week has been ridiculously busy and stressful and there have been many ups and downs. I’m feeling more than a little overwhelmed. I haven’t had much time to write and I’m not quite happy with any of the things I’ve already written; I wasn’t even sure I would be posting. But then I remembered this video. I’ve wanted to post it for a while so here we are. I’ve talked about Anna Akana’s videos before (I think she’s great!) but this one really speaks for itself. Just watch it. It’s worth it.

Surviving Is Better Than Not Surviving

Trigger warning for self harm. Please don’t read this if it’s something that will upset you or trigger you. I only want this to be helpful, never harmful. I also want to add that, while I’m not promoting or endorsing it, I’m never going to say, “Just don’t do it.” It’s just not that simple. My hope is that more openness on this subject will make it easier for people to access support and therefore not feel the need to do it.

It’s been on my to do list to write more about self harm ever since I posted the first piece. It’s one of those things that I will never get tired of talking about, never get tired of raising awareness for. There are so many misconceptions around it. I mean, I get it: there’s something inherently un-understandable about wanting to hurt yourself, unless you’ve gone through it. And even then, it’s massively complicated. Feelings are weird and pain is weird; it’s not surprising that people struggle to make sense of it. But I’d like to think that things will get better, hopefully sooner rather than later.

I was inspired to write this post after watching a YouTube video, ‘Living With Self Harm Scars’ by Claudia Boleyn. I’ve been watching her videos for more than a year now and I particularly love her videos about mental health. Borderline Personality Disorder (BPD) and self harm still aren’t commonly talked about so to find someone describing their experience, both positive and negative, and giving advice is invaluable. And to find someone so thoughtful and eloquent is even better. I really relate to a lot of what she says.

She’d posted a video in which she wore a short sleeve shirt that exposed some scars from self harming and had received several messages about how validating it was to see someone with visible self harm scars, without shame or drama. So, as a response, she’d decided to make a video discussing the importance of living with these types of scars, which I found both interesting and useful, even as someone with ten years of experience with self harm. She put into words so many emotions that I’ve felt but for a long time couldn’t vocalize. Had I had something like this when I was younger, life would’ve been very different.

The video isn’t necessary for the rest of the post to make sense but I really recommend watching it:

Some of the things she says are so true it’s painful.

One of the biggest things about self harm is the release you get from doing it. My emotions get so strong sometimes that I feel like there isn’t space for anything else in my body, in my brain. There isn’t the space for my lungs to expand; I can’t breathe. It almost feels like the emotion is crushing me and the only way to survive is to open up my skin so that it can escape. It’s like a pressure valve. Once I’ve done it, I feel like everything stabilises and I can think more clearly. If there’s a problem, I can deal with it and if there isn’t and it’s just an overload of emotion, I can take care of myself a little better than I could if I hadn’t. As heavy as it sounds, Claudia describes it as ‘a way of not killing herself,’ which is a feeling I can empathise with. I’m sure many others can too. I’m not saying it’s a good thing and I’m not encouraging it. It is NOT a healthy coping mechanism. But that logic isn’t very persuasive when you’re dealing with such overwhelming emotions. Claudia also talks about this: “It’s not good for you in any sense… but it’s something. It felt like doing that at least proved that there was something there… And it just felt like this huge build up of feelings and I had to do something to get rid of it and doing that… was something.” I can completely relate to that and I think that’s a feeling that is often exacerbated by how difficult it is to get a diagnosis because having something is better than having nothing.

In my experience at least, trying to cut myself off cold from the only thing that helps me get through doesn’t help; it just makes the need worse and then there’s potential for me to do more damage. So I do my best to be safe while working on my issues in therapy so that one day, I can stop because I’m okay and not because I’m suppressing the urge. Because if that’s the case, I’ll always come back to it. To quote Claudia: “If you’re a self harmer then I think it’s always in the back of your mind as, like, a coping mechanism… The problem is: it’s always there so you always have to avoid it and avoid triggering it.” To give up self harming is a really big ask, and an even bigger one if you’re trying to do it without support. And if it’s too much for you, or for you to do all at once, that’s okay. I don’t feel ready to stop but one step at a time. The fact that my therapist supports this is a huge deal to me and it’s one of the things that told me that she was the right person. This has greatly lessened the pressure on me and has helped both me and my family to work through it a bit. I used to feel so guilty that I was hurting or upsetting them so I hid it and that was doing it’s own kind of damage. But now that we have a plan, now that we’re moving in a forwards-like direction even if it isn’t always easy, everyone seems to be coping with it better. I can’t imagine what it’s like for them to see me in that place but you can’t put that on top of the emotion that makes you want to do it; it will eat you alive. I think the only way forward is to try and talk about it with someone and do what you can to avoid it if possible.

I don’t have quite the same experience as Claudia does. That’s fine. Every response to self harm is a valid response. However you feel about it is okay; it’s your struggle. She talks about feeling annoyed and upset about having self harmed and wishes she hadn’t done it whereas I’m not (yet?) in that place. She talks about how it releases all that feeling but then you wake up the next day and feel like you’ve let yourself down. But, while that is quite a negative response, the way she talks to herself is very positive: “I’m just taking it as a stepping stone and saying, ‘Okay, you took a step backwards but you can take five hundred more steps forward. It’s fine.’” She talks about having a certain pride about them because they’re proof that she got through a really tough time. She can look at them and feel compassion and forgiveness for the version of herself in those moments: “It’s a part of me and it’s a part of my past and that’s okay. And I wouldn’t erase it and in a way, I wouldn’t want to because I’ve learned so much going forward.”

For me, self harm is usually a survival strategy. It’s getting through a moment that I feel like I can’t possibly get through. Maybe it’s the worst possible way to get through it but it’s better than not. So when I look at the mark the next day, or the next month, or the next year, I remember that moment: I remember getting through. I remember feeling like I can’t survive another second and then I remember the calm afterwards. I remember that I did what I had to do to survive. I wouldn’t say I’m proud of that – or proud of the scars – but I’m certainly not ashamed of it. Maybe one day I’ll find something that gives me that feeling without doing any damage to myself. How wild and glorious would that be?! But that’s the end goal, not the next step.

My other use for self harm is to mark a traumatic event. I think one of the hardest things about struggling with your mental health is the fact that people often can’t see what you’re going through and I needed it to be seen. I felt so traumatised by the strength of the emotions and by the meltdowns and I just couldn’t process that without a physical, identifiable injury to associate it with. Again, I’m not saying that this is a good method of coping but it was all I had at the time. Now, I have other things to try. I haven’t yet found anything that works but what’s important is that I’m trying, even if I don’t want to sometimes. This is a whole other issue that I do want to talk about at some point: to someone who hasn’t ever self harmed, the idea of not wanting to stop doing something that is so bad for you is weird, but is a feeling that is often associated with self harm. That feeling can be very isolating because many people don’t understand it, and many more react badly to begin with. And feeling misunderstood can really exacerbate the feelings that lead a person to self harming. I think that discussing self harm and learning about it can only help with that. There will be people who say that bringing awareness to it will encourage people to self harm and while that may be true to a certain extent, the amount of people it could help would massively outnumber that.

People do ask about the scars. I’ve personally never had an unkind response to them; it’s usually just awkward. Even if someone doesn’t actually bring them up, I see them notice and it can get really uncomfortable because no one knows how to handle it. Claudia mentions being embarrassed about people seeing them and talks about how she has tried in the past to cover them up. Sometimes that’s just easier. It’s so complicated and it’s hard when people don’t get it or jump to conclusions. There’s the typical, “You’re asking for attention,” which has always frustrated me no end. I’m not sure when asking for attention became such a negative thing. Of course, there will always be people who abuse the compassion of others, but I would hope that our first reaction would still always be to try and help. If someone is asking for attention in some way, they probably need it, even if the reason why isn’t immediately apparent. I never tried particularly hard to hide what I was doing because I think that, subconsciously, I wanted someone to draw attention to it and see what I was going through. But at the same time I didn’t feel able to talk about it.

Sometimes people see the scars and assume that you’re ‘showing them off’ when you don’t cover them up, which is weird to me. I’m not sure why you’d want to ‘show off’ or ‘flaunt’ the evidence of a moment where you’d gotten so low that you had to physically take it out on your body. When you think about the lengths people go to to hide their scars – wearing long sleeves in a heat wave, making endless excuses as to why you can’t go swimming, hiding them with make up or bracelets or tattoos, spending every second thinking about your scars and how you’re going to make sure that no one sees them – it’s clearly not a straightforward issue. And as Claudia says, it’s not showing off; it’s a form of body positivity, of learning to be comfortable in your skin, regardless of what that skin looks like. That is a hard thing; it’s something that should be supported, not torn down.

There’s obviously a lot more to talk about when it comes to self harm but this is already a lot longer than I’d originally intended it to be! This is something that makes me really emotional and fired up so I could probably write a book on it. It’s so important to talk about and talk about openly and honestly. I wish I’d found someone writing about it or recording YouTube videos about it when I’d started struggling with all the things I talk about on this blog. Had I, and the people around me, had more knowledge and awareness about all of this stuff, my ‘mental health journey’ would’ve been very different.

‘How To Feel Pretty’ by Anna Akana

This is a great little video on ‘feeling pretty’. I find it pretty easy to talk about mental health stuff but I really struggle to talk about body image and even more so when it comes to talking about it from my own perspective. Anna Akana is both very eloquent and funny and this video is a great reminder about keeping perspective when it comes to beauty. It’s a good lesson in body image but also in talking about body image: so much advice is inspiring but difficult to put into practice. What struck me about this video was how actively useful it is, as well as being inspiring.

 

“But above all else, most importantly, please just let yourself feel pretty.”

You can find more of Anna’s videos here. I really, really recommend them!

Introducing Trichjournal

I’ve been really struggling with my hair pulling lately. It goes through phases: sometimes I can go several days without pulling and sometimes it’s like my fingers are velcro-ed to my head. Right now, I’m in the latter. I don’t know whether it’s linked to my mental health (which hasn’t been great) or whether it’s just so ingrained that maybe nothing can stop it. Either way, I’ve been tearing out a lot of hair recently.

When I was writing my original post about Trichotillomania, I rewatched this video. I had discovered Rebecca and TrichJournal very early in my hair pulling and it was incredible. I wasn’t alone! I felt understood and I’m pretty sure that that helped me to stop pulling the first time. Even though it hasn’t lasted and I’ve since started pulling again, I’m still so very grateful for that.

That first post didn’t seem the right place to include this video but I have wanted to post it because I related to it so strongly and out of all her videos, I think it so truly shows the distress that Trichotillomania can cause. It’s not just pulling a bit of hair out; it has profound effects on the person and their life.

A few quotes from this video:

  • “My fingers are screaming to tear at my hair right now. In the past I’ve described them like magnets: they are attracted to my hair.”
  • “I really, really want my hair to grow. And I’m really, really scared of losing it.”
  • “Yes, I’m still pulling, because the pulling never stops.”

I’ve been watching Rebecca’s videos for about three years now. Apart from videos on Trichotillomania, she talks about mental health, hoarding, makeup, her life… oh, and her cats. They’re gorgeous. You can find her channels here and here. I really recommend checking out her videos.

‘What It Feels Like To Die’ by Claire Wineland

I found this video a little while ago and I’ve been thinking about it ever since. Claire Wineland talks about her experience with death in an incredibly thoughtful and insightful way. Death is a subject that I’ve always found really hard to talk about (even think about, to be honest) so I wasn’t sure what to expect when I clicked on the video, or even why I clicked on it. But I’m so glad I did. Claire is very eloquent and I was very inspired by her honesty and sincerity. This video hasn’t solved my anxiety but it feels a little less blinding. I guess it’s validated my fear, made me feel like that’s okay. And I think some of her sense of wonder has rubbed off on me a bit. It’s really worth watching.

Some quotes from the video:

  • “What I am opposed to is the notion that you can do death properly.”
  • “You can’t just let go. Because the whole point is that, when you’re dying, you should want to be alive. Because you’re losing every single possibility that was ever in front of you. You’re losing the person you could’ve become, the things you could’ve done, the things you could’ve made with you life, you’re losing that. And no matter how spiritually enlightened you are, or how many times you’ve thought about death and think you’re okay with it, you will grieve that when you’re dying. You will grieve the life that you could’ve lived otherwise and there’s no way to get around that.”
  • “The whole point of being alive is that you ARE alive and that you can make something with this.”
  • “We’re literally the manifestation of some kind of underlying brilliance to how everything works.”
  • “I don’t think that people realise that you’re not supposed to go peacefully.”
  • “The truth is the whole point of dying is to be scared, because that means your life meant something to you. You should fear dying. You should be terrified of it… Because life does mean something.”