Black & Chronic

Coming to terms with it, getting over it, moving on from it, coming back fighting these phrases to me all assume movement some kind of active experience.

What would be my own experience of the slow process of becoming more disabled by society, the way my body has been displaced by the world around me, it has been ejected from buildings I can not get into, and made invisible and visible by the light of different spaces under the gaze of those who call themselves able.

At the same time I experience a suspended-ness, a non movement a less movement. I have now discovered the activeness in the stillness and the fight in the lying down.

I do not feel a progress, I hate the idea that I must learn from this experience; that I am made stronger by my body becoming weaker. I feel forced to be stronger because the world has shut me out and I have to crawl my way in or is it drag my tired legs in, breathe in, keep pulling my fatigued, weak and pain ridden body into the world that wants to push me out.

I struggle with the desire to make my pain visible in a fuck you I’m in pain kind of way while at the same time wanting permission to be invisible to not be a portal for the worlds projected feelings of discomfort to be placed. Yet I do not want to be rendered invisible for the gaze to look through me to pretend that I am not there, that I am nothing to do with the gazer, that they can distance themselves from my body and from their own body’s weaknesses and fears.

Maybe its not a coming to terms, it’s a sitting to terms, it’s a lying down to terms, it’s learning to save the energy for another day or another fight.

I feel that maybe the terms that I am expected to come to are terms which involve the acceptance of a disabling world, the terms I must ‘come to’ are the terms of - putting up with; getting used to the ways that temporary able bodied people (TABs) fail to see me and my access needs. The social acceptance of the way things are, the pace of life, the lack of patience, the stairs, the lights, the chemicals, the abuse, the assaults, the lack of a holistic medical service, and the expectation that disabled people overcome their physical limitations quietly in a way that does not disrupt the lives of TABs in any way. These are terms I do not want to come to or lie down to.

Often the experience of becoming suddenly disabled or more disabled is likened to the grieving process. There is a lost of a past life and the acceptance of a new disabled life. I think yes I have a mourning, and there are days I want my old life but the greatest pain of this change in my life is the pain of being left out side by society. I know that I could still live a life close to the life I had, that I could be less isolated more able to have the life I want and what stops me is not my inability to be a heroic disabled overcoming my limitations, no what stops me is the people around me not thinking about me, not caring that I am not there. What stops me is the government’s lack of support for me to live in a place that suits my needs, to access the right kind of transport to have the human support I need in my daily life.

It is my task to hold on to the knowledge that it is not me that has to come to the terms. That those terms which do not make the world accessible to all bodies are not terms I ever want to sign up to, I don’t want those terms, to those terms I will not come and until the barriers to my exclusion are addressed I will not be coming anywhere I will be crawling, limping my way into the world with a fuck you I will be lying down refusing the terms until all our bodies are included.

Living with pain brings with it a set of new knowledges that I would not have expected. Until I began this life of living with the daily pain of this illness, I did not know how many different types of pain there really were. I think the language of pain is so much dominated by the medical model of illness and disability and all things bodily. Pain is acute, chronic, sharp, dull, sever, mild etc…  but pain is not viewed in the holistic way that I experience it. Pain for me is often mixed up with emotional pain, or emotional states, with spiritual pain, or existential pain; pain can be pleasant, pain can be reassuring, pain can feel political, pain can feel social, pain can feel like warfare, pain can feel like your body sending you a message, pain can be protective. Saying that pain is holistic is not to say it is not real and does not have a real physical base, but I am more than organs, blood, tissue, and our physical pain is filtered through our context. So here are a few pains that I experience some on a daily basis some less often, some very rarely:

Self-Blame Pain

There’s the oh no I did it to my self pain – this pain comes with a lot of self blaming, and recalling all the things I have done to deserve this - I walked too far, too fast, too long, I picked up that bag, I did not sleep in the right position, I should have been better in my youth, I took my body for granted, I’m too much of a perfectionist, I need to shake myself out of this, it’s because of not enough exercise as a child, it’s because of too much exercise as a child, it’s because I did not eat well, it’s because I eat too well, it’s because I am causing it myself, it’s because I’m crazy, it’s because I had a hard childhood, it’s because I’m a woman, it’s because I’m queer, it’s because I did not pray enough, it’s because I’m not motivated enough, it’s because I can’t accept it, it’s because I can’t accept my limitations, it’s because I do accept it, it’s because I’ve stopped believing I will get better, it’s because I did too much of something or too little of something, IT’S JUST ALL MY FAULT!

Puppy Pain

Whining achy all over pain - that makes me feel like whining, maybe making noises like a puppy it’s not a strong pain but I just can’t ignore it is so uncomfortable.

For Real Pain

Then there’s the Oh my goodness I am so ill this is so real pain. The truth of the fact I have a real physical illness that I can’t just make go away really hits me. This pain sometimes empowers me, makes me feel like I deserve to be treated with respect, that my care of my body is important and that anyone that threatens my ability to look after my body can f*** off.

Pain of Death

This is the kind of pain that feels like its stealing my soul its deep inside my back and it feels like it will never go away it’s slowly killing my spirit, leaking away my fight, my energy.

Surprise Pain

Then there’s the where on earth did that come from pain – the kind of pain that is like a big surprise, it’s in a place that I just don’t expect, I’ve done nothing to cause it, it makes no sense in the light of the fact that I have been good in everyway to my body. It’s the kind of pain that can be reassuring because I eventually conclude well clearly there is nothing I can do, this is just random, I can not control this illness so I might as well just respond to it the best I can.

Alien Pain

Then there is the weird indescribable pain – where I try to explain to someone what it is and then I suddenly realise that I sound like I might not be human.

Political Pain

Then there’s the pain that feels political, that reminds me of all the needless pain in my life how hard I have had to fight to survive, how the politics surrounding my disease has had such an impact on my life, my body and my sense of self. It reminds me of all the ways in which I am silenced and oppressed. There’s the pain of my powerlessness to change things, and my hopelessness that things will change.

Rage Pain

Then there’s the angry pain, the kind of pain that fills me with rage and my body and at the world, angry at how inaccessible the world really is. Angry about capitalism and the pressure for me to push through the pain and go to work, to push through the pain and keep smiling, pretending that I feel fine to protect all the insecure people in the world who can not bear to see public pain, or want to look after me, or send me home.

Visible Pain

Then there is the pain that can’t be hidden – this is the pain that I can not pretend is not there because it’s too sever or because I just have not got the energy to pretend it is not present.

Not Real Pain

Then there’s the pain that can not exist – sometimes the constant messages about my illness that dismiss it, psychobabble it, and render it not real get inside my pain and make me feel like I must be imagining the pain if only I could just imagine it away.

Lonely Pain

The pain that makes me feel so alone like there is no one on earth who could ever know about how I’m feeling. Like there are no words to describe it, like I wish I could just share it just to feel not so alone just for a minute.

Collective Pain

Then there’s the collective pain the pain that makes me think about how many people there must be out there who are in pain and how badly we are treated and how much strength we have. It makes me feel sad angry and tearful that so many amazing people are fighting such huge battles and so often fighting against people and systems, which are unjust and need to change.

Each woman responds to the crisis that breast cancer brings to her life out of a whole pattern, which is the design of who she is and how her life has been lived. The weave of everyday existence is a fertile training ground for how she handles crisis. Some women obscure their painful feelings surrounding mastectomy with a blanket of business-as-usual, thus keeping those feelings forever under cover, but expressed elsewhere. For some women, in a valiant effort not to be seen as merely victims, this means an insis­tence that no such feelings exist and that nothing much has occurred. For some women it means the warrior’s painstaking examination of yet another weapon, unwanted but useful.

I am a post-mastectomy woman who believes our feelings need voice in order to be recognized, respected, and of use.

I do not wish my anger and pain and fear about cancer to fos­silize into yet another silence, nor to rob me of whatever strength can lie at the core of this experience, openly acknowledged and examined. For other women of all ages colors and sexual identi­ties who recognize that imposed silence about any part of our lives is a tool for separation and powerlessness and for myself, I have , tried to voice some of my feelings and thoughts about the travesty of prosthesis, the pain of amputation, the function of cancer in a profit economy, my confrontation with mortality the strength of women loving, and the power and rewards of self-conscious living.

Breast cancer and mastectomy are not unique experiences, but ones shared by thousands of American women. Each of these women has a particular voice to be raised in what must become a female outcry against all preventable cancers, as well as against the secret fears that allow those cancers to flourish. May these words serve as encouragement for other women to speak and to act out of our experiences with cancer and with other threats of death, for silence has never brought us anything of worth. Most of all, may these words underline the possibilities of self-healing and the richness of living for all women.

 There is a commonality of isolation and painful reassessment which is shared by all women with breast cancer, whether this commonality is ” recognized or not. It is not my intention to judge the woman who has chosen the path of prosthesis, of silence and invisibility, the woman who wishes to be ‘the same as before.’ She has survived on another kind of courage, and she is not alone. Each of us lives daily with the pressures of conformity and the loneliness of difference from which those choices seem to offer escape l only know that those choices do not work for me, nor for other women who, not without fear, have survived cancer by scrutinizing its meaning within our lives, and by attempting to integrate this crisis into useful strengths for change.

I was just re-reading the Cancer journals and these opening paragraphs really resonated with where I am at with my M.E right now. I think what she says about cancer though in some ways quite particular to cancer and life threatening illnesses and I don’t want to  diminish or even make comparisons but I do think that what she said can really be applied to women’s experiences of M.E and the challenge that it presents us with. It speaks to me because I also deeply believe that silence will not save us and that by speaking out about our experiences of this awful disease that has for too long been dismissed by the male dominated medical profession. This disease, while not directly life threatening has led me so close to losing my life because of how unbearable it is and because of how unbearable it is that it is so badly understood and not even believed. It has forced me to reconsider everything about who I am about about my life’s ‘pattern’. And my only way to survive it is to keep speaking out to keep examining it, to stay awake stay self conscious and let no one challenge my own experience my own self knowledge about the realness of this illness and what I need to live my life, to stay visible against the enormous force that wants me to stay quiet and unseen. 

I have been thinking about how to write this piece for many days now. It is just such a difficult subject to think about, to talk about to write about.  Its almost as if just by typing out the letters S-U-I-C-I-D-E, I will make it happen for myself or for someone else. Its like a conversation ‘killer’, its so serious we can’t even joke about it. We can’t consider why it might be an understandable decision for some people who are forced to live lives where they don’t feel that they have any options open to them. It’s personally hard for me to write about because it is very personal to me. I seriously tried to kill myself as a teenager. My cousin hung himself on new years day this year. In the last 10 months or so the idea of suicide has been heavy on my mind. I feel it’s important to write about it to talk about it, I’m sure it’s a personal issue for so many people, yet it is something we all struggle to talk about. It’s a part of life that would be easier to not think about. I am filled with the guilt that I did not help my cousin; that I did not have the chance to talk to him about it, to help him find the courage to talk about it. I know logically that it is not my fault but those feelings are still there: I want to rewind the clock. Maybe the hardest thing to face about his death is that I can relate to that desire to end it all so much. It’s so close to my heart. I so often cannot stand this illness, the way it has stolen so much of my life from me, the person I use to be the things I used to do. The statistics say that 1 in 10 suicides are related to chronic illnesses so I’m certainly not alone in this struggle.

I think of being diagnosed with a chronic illness as being given two illnesses: there are two weights to carry, they are tied permanently or semi permanently onto your body and you can’t shake them. One of the packs is the disease: it’s living with the every day experience of disease, the unpredictability of it, the lack of a cure, the lack of control over your own body, the change in your life, living a smaller life, living with constant pain. This first heavy pack sucks, it’s heavy and constant and drains hope, and takes so much strength to keep going through, but the second pack is almost worse: it’s the weight of having to live with other people’s perceptions about your illness, it’s having to live with prejudice, misunderstanding, the isolation that comes with having a chronic illness especially having those illnesses that are so badly understood like, CFS, Fibromyalgia, Crohns disease, Lyme disease, Lupus, Hepatitis, Emotional health illnesses, Ménière’s disease…the list goes on… having to live with the limitations of medicine which is so often unable to relieve many of the symptoms. Also having to live with the dismissal of medics who often see people with these illnesses as time wasters or worse as hypochondriacs. Having to explain yourself to people constantly, sometimes having to deal with the abuse that you get, having to live with the stigma, people thinking your making a fuss about nothing, people feeling sorry for you, people treating you like you’re crazy or invisible. The second pack is a killer as if the first pack was not enough to kill you! The second pack is often the thing that threatens to push me off the edge. Considering how heavy and relentless the first pack is, the least people can do is make the second pack lighter, offer understanding, support, make the world more accessible, more comfortable for us, but my experience is that people just make it harder to live a chronic life, even good meaning people can cause me so much exhaustion or physical and emotional pain.  There are those days, those moments where it overwhelms me. When I feel imprisoned, in this body and in this oppressive world and death seems like a way out.  No one can assure me things will get easier, this illness is so unpredictable; no one can tell what the future holds for me. I can hope that people will change, that people will understand, that I can teach people and keep fighting for people to understand.

I’m conscious that I feel compelled to end this piece with something positive to those out there struggling to live. I want to say hang in there. I want to convince myself that I can keep going. I don’t know really. I don’t see the problem as people including myself not having enough strength. Living with chronic ill health forces you to be super strong, emotionally resilient, you have to fight for understanding, for medical attention, to get through each day. That is strength that cannot be measured. So it is not to those that are suicidal that I should feel compelled to speak, it’s to the people that treat us so badly. It’s to all the managers I have had that have worked me into the ground and discriminated against me because of my illness. It is to all those doctors that make people feel like liars, time wasters, hypochodriacs. It’s to all the able bodied and non-chronic people who ignore, dismiss, abuse, insult, and care less about people with chronic illness. Maybe we all have a responsibility to making sure our behaviours do not dismiss people, do not close down people’s options until death feels like the only way out. 

Audrey Lorde’s powerful message that self-care is political warfare speaks so much to me right now. It is not just about chronic illness and disability, it is about all of those people in society that feel silenced. It is about all of those people in society that are systematically targeted by the oppressive and discriminatory politics of the powerful few. I don’t know what it is that keeps me alive, that keeps me going that keeps me fighting, but I like to think that it is because I do not want the powerful to win. I do not want to believe that my life is not valuable just because the world makes it seem that way. I want collective self-care, I want to keep caring for myself and for others because I want our survival to mean something, I want our lives to be lived and for that living to be witnessed. For the creativity, the laughter, the tears, pain, love and the beauty of our lives to be archived to be valued. I feel a little like I’m being all slushy and touchy feely I guess I am but I’m also militant about it, I will not go down easily.

1. Having an increase in your symptoms means you have done been doing TOO MUCH! and running on empty energy. Sometimes even though it feels like you have done nothing to trigger the crash but the truth is your body is trying to tell you to slow down.

2. Doing TOO MUCH is NOT your fault. Don’t beat yourself up or stress, spend more time being pleased with yourself for how well you are listening to your body now.

3. Meditate/rest ESPECIALLY when you DON’T want to.

- not wanting to meditate is probably a sign that your are running on empty energy or are disconnected from what your body needs - meditating can tell you more about your body than anything else - helps with halting that empty energy adrenal energy train.

4. Make FUN! Break the rules 

- Stick to your schedule - Only break the rules to have FUN. not because you feel obliged to do something, not because you feel pressured. 

5. RELAX your muscles as often as you can remember.

6. SLOW DOWN as often as you can remember.

7. REST! REST! REST!

- Low rest -

•     sitting down
• watching tv/plays/cinema
• relaxed talking
• laughing
• stretching

- Medium rest -

•            Listening - tv/radio/music/books
• Lying down
• Light sleep
• Watching relaxed content

- Deep -

• Mediation
• Deep sleep
• Eyes closed - lights off - non anxious thoughts

8. Remember to ask yourself the question ‘how can I do this activity with less energy?’ et sitting down, lying down, closing eyes

9. Eat GOOD food!  

- Healthy nutritious and tasty - avoid being too full or too empty. 

10. Keep tuned in

- DON’T push through, repress or ignore your body

11. Be gentle & kind to your body

- Long baths, treatments, oils, massage, nice bedding, cosy seats, good hugs.

As people with chronic Illnesses there are just so many annoying questions that non chronic people ask. Two of my most hated are the questions ‘How are you feeling today?’ (particularly when this question is put in a tone that suggests that you have to be feeling better today) and ‘You look a lot better today?’ (its not really so much a question as a statement really because all they want you to say is yes) However the main feature of CHRONIC illness is that it is CHRONIC and hence these questions that force me to say ‘I’m fine’ when I’m clearly not, are really really annoying. So here are a few thing me and a fellow chronic friend thought up as responses.

Q. How are you feeling?/ Are you feeling better?

A. “I feel on top of the world!/Never felt better/ I did not know it was possible to feel this good!” (can be good said with animated sarcasim or while in obvious pain/discomfort)

Q. How are you feeling?/ Are you feeling better?

A.  ”I feel so much better now you’ ve asked/your question has cured me! Amen! I’m CURED!”

Q. How are you feeling?/ Are you feeling better?

A. “I’m actually feeling tired of being socially pressured into saying i’m fine when in fact I have a gruelling chronic illness that affects me everyday, how are you?”

Q. How are you feeling?/ Are you feeling better?

A. “Your question has just made me want to kill myself!/ I was feeling shit but after your irritating question I feel so much worse! Getting worse by the second!/Your question killed me, I just died!”

Q. How are you feeling?/ Are you feeling better?

A. “Let’s play a game. Given that I have my CHRONIC illness, every day, how do you think I am, go on GUESS!?/Guess. I’ll give you a clue. Shit.!” 

Q. How are you feeling?/ Are you feeling better?

A. “Oh wow what an interesting question. Well. Let me think. It’s somewhere between ‘I feel like shit’ and ‘I feel like absolute crap.’”

Q. You look better today?

A. “Oh I’m so thrilled you think I look better! because if my disability was that my face looked unwell whilst my body was fine, that would be great. Unfortunately though I have a CHRONIC illness and I still feel like shit.”

Q. You look better today?

“Oh thanks. You look the same as always.”

Q. You look better today?

A. “Congratulations! when did you get your degree in medicine and specialise in diagnosis by sight!? “

Dear all, I am not interested in your cures right now. Please stop suggesting things, I am so tired of it, I have been through the process of emptying my bank account on treatments, and pinning my hopes on cures. Right now I’m in a phase of acceptance, I need you to accept that. If you really want to help please just help me make my currently much limited and slow paced life as pleasant as it can be.

I can do nothing but write. Is there an assumption that I should just keep going? That my role is to keep overcoming while people choose to use their power over me, while people try to control me, try to theorise me and try to  belittle me. I don’t know how to describe it, when I try to think how to summarise where I am at I cannot, this is partly why I am compelled to write rather than talk but I also feel that there is no one out there that can carry the weight of my pain right now, there is no one with whom I can speak of this to, how do you find the words for something when there are not ears to listen? I am trying maybe to explain it to myself so that I can listen so that I might be able to hear my own pain, so that the part of me that knows how to find a way forward will hear it but at the same time I feel resistant to the inevitability that I will move forward, I have always been moving forward, pushing my body full of toxic feelings of exhaustion pain and discomfort I’ve always been pushing this body through toxic socio -political environments that have tried to crush me.

Why is it impossible for the world to accept difference? Why is it impossible for people to listen to look for understanding rather than deception, and pathology? I don’t know if my acute awareness of this type of thing is helping me or damning me. I feel so exhausted from having to explain or having to create a defense a thick skin against the idiotic things that people think, the ways in which people fail to think. Racism, sexism, disability oppression, classism, gender oppression, mental health oppression, trans oppression, homophobia, antisemitism, colonialism,  they are not just taken for granted experiences they are unacceptable. Every way in which these things are subtly and explicitly directed towards me or towards any other people is unforgivable. They are intolerable, they hold people down, they kill people, they are killing me, how do I watch my own death? How do I find a way to not be powerless, when I feel so powerless, why am I expected to push forward to keep fighting when my very ability to fight is being attacked? All of my tools for resisting are being taken from me, the world feels so hard like it does not want me to exist and the world would be able to roll over my dead body and move on, continue to operate as if nothing has happened. Continue to hurt and destroy so many other people.

My way of being, my body, my mind, my spirituality, my hope, my beliefs, my life’s story are all under attack of denial. How do I get to write my world? And not allow those in power to tell my story? To erase my experiences?

Anxious words, ignorance, malevolence, all of these excuses that allow people to not have to face the humanity in others, people can forget that there are human beings in front of them, I don’t feel it is just a mistake, mistakes are apologiesd for mistakes are taken back and corrected. These are not mistakes they are choices to continue to operate the machine the way that it has been designed to operate.

I have a new appreciation for anger in a way that I have not understood it until recently, anger is often a sign we are still awake, it’s a sign that we are still fighting that we still have fight inside us, that we still believe in injustice and that we are dissatisfied with the society and the world as it is. I have this anger, this fire inside me that is so dissatisfied that is so enraged. I demand more, and I will not be told to stop demanding more, but does this make my existence inevitably painful? And what is anger when all the doors have been closed? I need somewhere to rage, I need something to rage at? Can I keep raging at those who choose to never hear? What does my rage archive? I’m drowning here under the weight of this, how can I express the depth of this pain, how would anyone ever understand how deeply I feel this, how it eats away at me, how it holds me down.

Maybe I just need a break from the fighting, maybe I need to rest, maybe I need to walk towards the pain and not try to avoid it. I am interested in the concept of internal strength the muscles that we can not see, the weights that people hold, carry and overcome, those that are societal, those that are social, those that are personal demons, the internal fights that can not be seen. That can not be labeled that can not be measured. The fact that they are unobserved goes to indicate just how much strength is concealed. That some of the biggest fights of humanity may have been at this level of invisibility. I’m in a perpetual warfare, it has different phases, it is epic like a Tolstoy novel. Ultimately there is no one who can come inside and join this war, everyone has their own battle. This is what makes this war such a impossible one to win. Yet on the other hand I guess there is a community warfare, that as others fight their war it helps others, that as we overcome the struggle to get up every morning, as we continue to fight for the respect of others, while we hold on to each other, while we all find ways to manage and negotiate these fights. There is community, but ultimately there are elements of the fight that are my own that no one can help me with, that maybe only god can see and support.

Does my heart have to break to be stronger? I don’ t know. I just need a place to rest and maybe this is the only place I can find it, here at the bottom of my heart.

So often I think I fail life by trying to conceptualise it all, to rationalize it all to make it all make sense, I guess meaning making is what we do to stay whole to be whole persons to explain our behaviour and to direct our actions. I can not live in a world with out meaning but I can not also live in a world in which all my emotions are made understood, rationalized, acceptable.

What kind of relationship can I have with my body? I feel forced to accept my body and the sensations that come with being in my body, and I don’t know how we are going to live together in the same place all the time.  Pain, restlessness, sleep monsters, body wrestlers and super levels of discomfort have moved into my body they have brought their clothes, furniture and idiosyncrasies with them and although they sometimes go out for a few days and sometimes on longer holidays for a few weeks they are generally here to stay for the long haul. So how do I make space for them? how do they get on with the other sensations of my body? Generally there is a lot of disharmony, all of them talking at the same time all of them wanting to be heard. 

These guests have totally redecorated. I feel like I’ve been forced into being sensible and controlled, I did not expect to be that person, the one who goes to bed early, and who does not drink too much, who has to make the right decisions and do hippy self involved things like obsess about all the things that go in and out of my body or take meditation seriously. I guess in that way my new body mates have changed me in such radical ways, not only have they changed the way I use my body but they have changed the way I think about my body and the way I treat it. Yet there is this little part of me that wants to unzip my body and evict my guests and run as far away as I can. 

So how am I supposed to relate to my body full of all these unwanted guests? what would such a relationship involve? I just don’t know. I feel at war, so much of me feels like I can’t stand the pain and discomfort I feel like i can’t take it not a minute more, but each minute passes. It kind of reminds me of being in abusive relationships for example with one ex I kept saying to myself that I would have to set a limit at which I would not take any more abusive or hurtful behaviour towards me, I drew the line and then the line was crossed (the abuse continued) and I just continued as before. The whole line drawing exercise was just a sham, I did not have the power to leave that relationship and I was never going to find the power the abuse was not something that I could just stop by setting my own rules, really the abuse would only stop if my ex decided to no longer put power over me.

 Anyway my relationship with my body guests sometimes feels like this a bit like I am kidding myself and constantly setting these rules about what degree of discomfort I will stand and not stand and also to what degree I will push my body to fulfil work and social commitments but for all of these things I don’t really think I have as much power as I like to kid myself I do. I think there is just too much pressure to push bodies past their limits, there is just too much of an expectation that living a good life and a happy life is not living with pain, that pain and discomfort are negative things in life that one should eradicate. I’ve been telling myself lately that pain is just a part of life, I generally find telling ones self things does not do anything other than give one the illusion of control. So will I go on putting up with my guests just taking each moment and day as it comes, finding anyway I can to get through it, if that means listening, ignoring, accepting, rejecting, talking to, drawing lines what ever it takes what ever helps for the moment then that is what I should do I guess and stop the incessant worry that I’m doing the wrong thing.

My physical experience, the way I feel in my body, I feel that I know that I have a physical illness, somehow being in the position where there is little I can do to completely prove this to anyone, I feel I’m often having to doge the crazy bullet so that people will understand that my experience is real. I fear being labelled crazy mostly because I don’t want people to withdraw the little support that they do offer me. Holding doors open, or just asking how I’m doing, am I in pain? this can make a day with a physical health condition just a little bit easier. 

Yet at the same time, I have no problem with the crazy label, I have officially and unofficially been given that label at various times in my life. I don’t think that people who are crazy don’t deserve support or don’t deserve to be taken seriously. I think that the label crazy can both be constricting, and damaging but it can also be freeing, exciting, it can give you permission to just be yourself, to see life differently, to embrace being on the edge of things. I want to be able to not care if people think that I’m crazy, I want to be proud of that label even if people attribute, my behaviour which is due to physical pain, as the behaviour of someone who is crazy.  I don’t want my desire to prove that I have a real physical illness to mean I have to distance myself from crazy, it is infact the energy it takes to stop people labelling me that way that is the most damaging thing. Living a life trying to prove yourself is exhausting, it takes up energy in my life that I should really be using to manage my health condition. I don’t believe there is a firm boundary between the healthy and the ‘insane’. I believe society, communities, relationships, and oppression is what makes people mad/crazy. I prefer being lumped in with the crazies. Working in mental health settings, I alway wish I could get rid of the badges I wear that tell people i’m a professional and just hang out in the smoking area with the people who have so much more to say and to give than the staff/sane people I’m supposed to hang out with. I guess it would be good if I could label myself with my own kind of madness for once, if I could embrace the parts of myself that are freer more expressive and that make me an out sider instead of fighting to not be misunderstood, I would be happier. Easier said than done but I’m gonna have a go. 

Dear you,

I guess I understand why you stare, why you see my body as breaking the rules of public bodyness or public body culture. In public the only best of the body should be shown. People want to see strong, durable, healthy, and able bodies. My body does not conform it rebels against these unspoken laws. My body is fighting a tiredness that you probably have never known, the kind of tiredness that feels like being wrestled down in the ground, like things in the centre of the earth are pulling me down towards them, my muscles just want to release and my body wants to collapse onto the floor. So if you see me on my knees it means I’m losing this battle or resting for a while. If you see me lying down I’m just in negotiation with my body I’m saying ‘body please don’t give up on me, take this moment of rest, and help me by reducing this tiredness and pain.’

I feel like there is this policing of my body in public spaces. I work in a very people orientated profession so I spend the majority of my time in these public spaces where I feel like my body breaks at least five rules of public body management. 

1. Rule one do not show physical or emotional pain.

2. Rule number two if you are visibly ill lock yourself and your illness away at home.

3. Rule number three stand on your own feet, do not sit on tables and walls and floors. Do not use wheelchairs or mobility aids, unless you are almost dying or have lost your legs.

4. Rule number four don’t show your lack of strength, eg. always open doors with ease

5. Rule number five do not lie down. Particularly do not lie down on floors, tables, corridors, toilets, stairwells, benches (unless you look homeless), walls, or spaces where people are passing through, or spaces where no body else is lying down.

Are your questioning eyes wondering why my body breaks these rules? are you worried that my disobeying body will some how threaten yours? are you trying to work out if I’m clinically insane, mad in a conscious way, or have something seriously wrong with me? Are you wondering why this young black woman would choose to use a cane or a wheelchair? Does it worry you that you too could need to use one one day? 

I just don’t know but I don’t have time to explain, I can not hand out this essay to all the people I pass by. My body is defiant, it pushes against these rules it challenges me to think about what the real worth of a body is, not just a vehicle we carry around to achieve our aims but a dynamic and changing entity that has its own demands that we are always negotiating. 

I’m so often apologising for my body and explaining for it but I sometimes I think why should I have to? My body has its own message to tell, I don’t know if it matters that people can’t hear it.

Maybe your body is neglected, maybe your body is overworked and run down maybe you hate the ways your body does not conform to these unspoken rules. Because no body could really pass most are too tall, to short, to fat, to dark, most experience pain and weakness and illness. Maybe my body reminds you of how you deny your body and of the energy you use keeping your body in line, keeping the questioning stares away from your own rule defying body. 

I do not need to understand why, I am not writing to you to stop you staring I’m not sure I have that power. I’m writing to you to free myself from your stares, I’m writing to you so that, I don’t have to constantly explain, I’m writing to free my body and to help me allow it to keep breaking the rules.

Wheelchair Use and Attitudes

By Sue Pearkes

Taken from the Journal of IiME Volume 2 Issue 2 - 2008