#why

I’ve been watching Hannah Maggs’s videos on Youtube for a couple of months now. Her husband Stefan said in their most recently weekly vlog that the ‘why’ of the vlogging determines everything. ‘Why’ you vlog determines the direction, purpose, and meaning. This is true of everything, and resonated with me in terms of blogging. My ‘why’ has shifted considerably since I started this process two years ago.

I started this blog with informative intentions rather than personal. I’d previously got in trouble for sharing too much in the blogosphere when I was younger, so I knew that, if I opened a blog again, I wanted to limit the personal content and share the information as much as possible. I started the blog to supplement the research I was immersed in for my publishing dissertation, and I wanted to use the material as the basis for a book (and a book proposal).

A couple of months into my blogging and research, a publisher for whom I have the highest respect completely changed my book. He said that my story was not an overcoming adversity story, but a relationship story. It therefore made the blog irrelevant.

I kept up with it through the remainder of my dissertation process, but now the ‘why’ for both the book and the blog have changed. When I ask myself why I still blog, the answer is, ‘I don’t know.’ I’m tired of writing about myself, of focusing on disability, and of focusing on content that is not relevant to my book now that my book will be different. The ‘why’ for my book is different, too.

I would like to take a break from blogging and, if I do write about disability, put that in the manuscript itself instead of online. I don’t have a compelling enough ‘why’ to continue blogging at this point.

Stef was correct. The ‘why’ determines everything you create.

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#headdesk

I had a conversation about my rehabilitative therapy earlier this week and articulated something that makes me very embarrassed and sad: the only reason I know I have made any progress is that other people have told me I have improved. Though my body has transformed in the last seven years, it doesn’t feel any different to me. My body feels the same as it always has. The therapy I have done has not made a difference to the way my disability presents internally. I think this just might be a matter of accepting that things are what they are, but it was very sobering and embarrassing to express it.

I certainly feel better as a result of yoga and physical therapy, but – as far as the actual disability is concerned – my body feels the same as it always has. The same is true of my disability itself: I don’t feel that my body is disabled. It feels normal to me. The only time I ever feel my cerebral palsy in my body is when I am about to fall, I actually fall, I struggle in some other way with balance, or I come up against something I can’t manage, like stairs that have no banister or a chair that is too high for me to sit on.

A couple of weeks ago, I went out with some friends and the only available table at the restaurant had chairs that were difficult for me. I sat and tried not to complain, but I could feel my disability in my body very strongly at that point; I used all my energy and strength in my body to stay as balanced as I could, but felt as though I were tipping over. I asked if we could move to a table that had lower chairs; we did and my body relaxed (understandably). The frustrating thing is that I’d wanted to be a good sport and not complain; I knew I wasn’t in a life-threatening situation, but I did feel in my body that I had to concentrate and balance any way that I possibly could so that I wouldn’t fall. This isn’t to say that my physical therapy hasn’t helped me get better. It certainly has. I just don’t feel any different internally and, truthfully, I don’t think I ever will. It’s difficult to realize and to accept it, but it just is what it is.

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#thelastactoflove

Four years ago, someone said something to me that, to this day, is crushingly painful. It makes me feel as though there is a massive weight in my chest, as though my heart is heavier than a brick. It makes me ache in my gut, but it hurts the deepest in my heart. She said, ‘Why do you want to be a writer. For what purpose.’ It felt as though she were saying to me, ‘Why are you alive. For what purpose.’

I have been trying to write a book for years and I’ve been making excuses because I’ve been afraid. I’ve been afraid of rejection, afraid of not being able to finish, afraid of not writing well, and afraid of not being able to tell my story in a way that is both honest and truthful.

I spent the weekend reading The Last Act of Love by Cathy Rentzenbrink. It was the story she needed to tell. She was honest about her experience without ever coming off self-pitying, self-absorbed, or attention-seeking. She simply – bravely – wrote the story she needed to write, and the story she wrote was beautiful.

There is always the matter of authenticity in biographical writing, and I as a reader was deeply touched by Cathy’s unflinching honesty. She lets the reader see her utterly broken, depressed, and unable to move through her trauma and grief. I recognized myself in that deep agony that feels impossible to climb out of, and the guilt that comes with wanting to be free and happy and feeling like she shouldn’t be.

Cathy’s story gave me a sense of understanding, hope, and meaningfulness; I could relate to her even though I had never suffered a similar experience or loss. I hadn’t been so personally affected by a book in a very long time. The story made me think of what had been said to me. ‘Why do you want to be a writer. For what purpose.’ This is why. To tell the story that needs to be told.

Writers don’t choose to be writers. They just are.

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#clarity

I met with my doctor Karen a week ago and we discussed the idea of universality in experience. What is unique to people with disabilities and what is simply part of being human?

I wrote down so many things that I thought correlated to my disability: alienation, rejection, feeling unsafe, and a lack of trust in my body. I realized that these are things that everyone feels and goes through. Nothing is unique to any one person or any group of people. Every feeling and experience we have in life has been felt by someone else, and feelings of depression and despair happen to everyone regardless of the cards they’ve been dealt in life.

I used to monopolize conversations. People gave me space to talk, so I took advantage of it and took up all of that space. I never realized that this was socially inappropriate, alienating and, frankly, boring for other people. It wasn’t as though I didn’t care about people. I did – and I still do, deeply – but I always related anything back to myself and I talked much more than I listened.

I’m very different now (because I learned to think critically, listen attentively, show interest in other people, and not instantly relate anything back to myself). I’m actually very quiet around others and let them do most of the talking. I’ve actually been criticized for being too quiet, and a boy whom I absolutely adored rejected me because I wouldn’t open up to him enough. In fact, two boys have turned me down for being too quiet. It’s difficult to get that feedback when I’d spent most of my life being criticized for too much openness.

Talking too much is certainly a symptom of being sheltered and excused, but I’m not the only person who does it. This is what I mean about universality: even though people didn’t like how much I talked – and how personal I could get too soon – there are loads of other people who do the same, whether or not they have a disability.

Someone just told me this afternoon that he’d spent all of last night in the company of another person who completely monopolized the entire night and didn’t even stop – or pick up on those cues – when he tried to divert her and to change the conversation to topics that were neutral rather than personal. It shows me that I’m certainly ‘not the only one’, especially since the woman who talked a lot was far older than me. Some people just like to talk a lot; if a person’s certain way of being causes discomfort or requires a lot of work, the people surrounding have two choices: adapt or leave. In this case, people choose to adapt. I’ve experienced both sides: people adapted to my loquaciousness or people grew tired of me and left.

Everything you ever feel, go through, think, want, need, or experience has been felt by someone else, and one hundred percent of what you go through comes back to universal experience. The most personal things – feeling like we don’t belong, feeling like other people have it easier than we do, feeling like we’re an aberration, feeling like we can’t get things right – are things everyone experiences.

‘What is most personal is most universal.’ – Carl Rogers

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#gettingon

I’ve wanted to write about this for a while now but I didn’t quite know how to express it (and I didn’t know how to respond to it when it happened). I had a positive and affirming experience that was nevertheless completely unexpected.

I spoke with one of my yoga teachers about managing my back pain. She also teaches pilates and, after class, gave me a couple of pilates-based stretches to do that would help with my discomfort. She said that my feet were quite stiff. I said, ‘I have cerebral palsy.’ She said, ‘I had no idea.’

I was utterly shocked, especially since I know that my body is not at its best right now. I have been a lot straighter, stronger, thinner, and more balanced than I am right now. I’m aware that my body has fallen back and that I need to work harder in terms of improving myself, but I just do physical exercise at this point in my life to feel better and manage my daily pain. I was certain that my disability was clearly evident to her, especially as a healthcare professional, but it wasn’t.

This is some proof to me that I might not have fallen as far back as I thought, or that my disability isn’t as visible as I think it might be. This is also proof to me that simply working for the sake of pain management and the feeling that yoga gives me doesn’t mean I’m doing something wrong.

Last night, my sister laughed at me for using the phrase ‘get on’ like an English person. That’s what I’m doing. I’m getting on with it.

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#managing

I have managed chronic pain for six years and I can’t see it getting better. I have accepted that pain management will be a part of my daily life. I no longer fight with it or demonize it. I just work through it the best that I can.

The pain occurs in my lower back just above my left hip. It is strongest first thing in the morning and dulls to a persistent ache throughout the day. I manage it with exercise, hot showers, massage, and stretching. I do not manage the pain with drugs of any kind because I am too afraid of becoming dependent on them, especially since my pain is chronic. I think it would be different if my pain were the result of an accident, an illness, or something acute. Since pain is now as much a part of me as my heart and skin, I manage it as best I can without any drugs.

People have suggested creams, ointments, and painkillers, but I have resisted them. I wanted to write about this today because my pain is worse than usual. Despite doing consistent yoga and actually having a massage this past weekend, I spent last night in excruciating pain that hasn’t got better today. I could take drugs for it, but I choose not to. I know myself enough to know that if I made an allowance once, I will do it again and again when I am in this kind of pain.

I will go to yoga tonight and do a hot class to try to relieve this pain and discomfort. Pain isn’t only hurtful, it’s exhausting, stressful, and alienating. I will use some yoga to get myself sorted.

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#notjumping

My friend Nicola made a Youtube video about disability and beauty. She asked for vlogging ideas and I wanted to know what her relationship to beauty was like, when considering her disability and not. She made a vlog and said that she used to believe that people wouldn’t find her attractive because of her disability, but she felt better about herself once she surrounded herself with friends who didn’t see her disability as an issue. She became more confident and happier in herself. That in itself is the most beautiful thing in anyone: self-confidence and intrinsic happiness.

I grew up believing that I was ugly and I was called ugly all the time. I have been called gimpy, ugly, and disgusting since I was very little. If anyone finds me attractive and tells me so, I instantly push back and say, ‘No I’m not,’ as though they have slapped me in the face. I can never take the compliment because I don’t believe it, and I believe that they are only saying it to make me feel better or buck me up.

A couple of nights ago, someone called me unattractive in a roundabout way. I tried to tell myself that his response to my looks said something about him and not me, but it doesn’t mean it didn’t hurt. It’s also why I reject anyone’s compliments about my physical self: I am so used to hearing that I’m ugly that I think anyone who says otherwise is lying.

I had two very tough yoga classes this morning. I cried through both of them. The first did nothing to ease my pain and discomfort and I just felt broken and defeated. The second was a little better; my teacher asked us to set an intention for the practice, then added, ‘Your intention is why you’re on your mat.’ My intention is to get better. The truth is that I would still feel ugly even if I could completely overcome my disability and walk out of it tomorrow. I would still feel ugly and people would still think I was ugly.

Disability does not equal ugliness. I just think I would still feel ugly even if I weren’t disabled. Even if I had grown up an able-bodied person, I would still consider myself an ugly person and other people would consider me ugly. It’s actually why I have never made the jump to YouTube and vlogged about my disability or my life. I am too afraid of the criticism about how I look. I am too afraid of comments about my body and of people calling me ugly.

I don’t know what it will take for me to consistently consider myself an attractive person. I think I just need to make some peace with what I look like and build strength in the other parts of me, the parts that I like. I think the rest will flow from there.

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