Black & Chronic

You know your living bed life when your bed has become your main place of residence. When your Friday nights, Saturday nights, Tuesday mornings, bank holiday weekends are all dates with your duvet. When you have disappeared from the clubs, parties, and social scenes you used to know, when your friends hardly know that you are no longer there, they no longer know what your life looks like. 

You know your living bed life when you have no answer to the question, what have you been up to? Or what are your plans? Or how was your weekend?  You learn to dodge these with a quick change of the subject.

You know your in bed life when your day clothes are indistinguishable from your night clothes, when you wake up at 4 in the afternoon fully dressed in a full piece suit because many hours ago you were under the delusion you were going to escape the clutches of your duvet. When you wake up with one sock and one arm still in your jacket because you got too exhausted to take the rest of your clothes off. When you have been living in your dressing gown so long parts of it has permanently attached itself to your body.

You know your living bed life when your evening meal consists of whatever stale food you can find within reaching distance, and you wake up the next morning with crumbs of that meal stuck to you forehead. 

You know your living bed life when your main event of the day is climbing Mount Everest just to get to the toilet. It’s the only way you can explain how exhausted it leaves you when you finally return to bed.

You know your living bed life when you spend more on bedding than you do on food. That Amazon shop for new pillows is the highlight of your month. You know its bed life when you find your self obsessed with the odd movements of your bedding, why on earth does the duvet keep failing to the left? Why does it feel like its being held down by an elephant? Who keeps stealing your pillows? Why does your duvet swallow up everything you own? Your pens? Your mobile phone? You know its bed life when wrestling your duvet in search for that thing that was just there just a min ago leaves you curled into a ball, exhausted and empty handed.

You know its bed life when you get the pleasure of experiencing the effects of the morning after the night that never happened. You can’t remember the last time you touched a drop of alcohol but you have the headaches and nausea anyway so it’s almost like you must have been at the party right?

 You know its bed life when all the plans you had in your diary get replaced by the now well known schedule of sleep, shit, eat, sleep, shit, eat, sleep, shit, eat….

 Its bed life when you realize that slimmer/fatter person in your bathroom is in fact you.

You know its bed life when your bedroom starts to feel like a public meeting area, and you open your doors to the scrutiny of friends and family who are appalled at the mess that you now live in and have learnt to ignore. You’re a bad dirty, queer, disabled woman, and your dirty washing pile is just another symbol of your failure. Your failing at the postmodern clutter free IKEA designed life you should be having. You know its bed life when you no longer know what the rest of your house looks like and you know longer care.

Don’t waste your time trying to explain yourself, don’t even make up excuses just wrap yourself up bury yourself in the sheets and embrace the life the Bed life you now have to live.

If your on twitter please tell me about your bedlife adventures by tweeting the hash tag #bedlife and adding the url for this post http://tinyurl.com/cr5ably

My wonderful friends have set up a go fund me page for me http://www.gofundme.com/2abdk8

They write:

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.

When you work in a toxic environment that is multiply oppressive and repressive of difference, it gets hard to answer the question are you happy? I just asked myself that and I felt this great emptiness. I woke up from a dream in which I had a dance exam the next day. I had been out with my work colleagues entertaining them. I’d organised tickets and shown people how to get to places, I’d done a dress rehearsal performance for them and then I had needed to go home at the end of the night. I asked all my colleagues, who all had access to cars, if they could give me a ride home because I had this big bag on my back and could not ride my bike home. They all said no, there was this awkward silence, the kind of silence that says we are all not willing to go that extra way out of our way for you and we wish you had not asked and made things awkward. So I was like ok, I walked out and when I got to a certain point where they could not see me, I took flight, rising above all the houses, at one point I picked up what I thought were gifts, some carrier bags, that I knew were left by one of my people for just such occasions. I loved that fuck you feeling of flying home, I felt like “you don’t even know the beautiful creature that you have rejected”.

I feel this way about my profession, I feel like it has lost me permanently, there is no way that I would fly back to take all that shit from it. I am gone now. I do not fly for or dance for them, I do it for me and for my people and my people are all struggling to fly home alone. Flying out of toxic environments when we can, breaking away from being pulled into a system that is damaging. I hate my profession especially because it tries to present itself as liberal, and better than everyone else, “we are these kinds of people we are better than everyone else.” but from my view point they are just as bad as everyone else and just as unaware of the damage that they do to so many. When you are the dominant culture, it’s not possible or easy to see the ways that you are excluding or harming people who are in less dominant cultures. Wait – I think I am letting them off here, I think it is easy to see, it is easy to notice, it’s just more convenient to ignore it, to push people aside, to not really be interested in listening. They are there to watch the dance they don ‘t want to know the physical and emotional trauma that goes into creating the person that I am and that so many people in my life are. People who have learnt to be beautiful, have learnt to dance, and to fly in a world that marks them out as different. In a world that has demanded a single cultural dominance, a way to be that is acceptable. A world that has marked bodies as being worthy of inclusion and bodies that are too brown, too fat, too weak, too gender non conforming, too dark, too poor, too angry, too artistic, we all learned to fly and leave supportive gifts on roof tops for each other, even when it’s too hard for us to always be together, because us coming together is too threatening to the dominance and toxic environments we live in.

In flying on the one hand I felt so free, like so “fuck them!” and so proud of who I was, the beautiful person that I knew I was. On the other hand I felt the loneliness I feel just like in the waking world. The fear that living in these toxic places will kill me, that working with such violence will end me. There was nowhere nearby to land for the nourishment that I needed, there were no safe arms to run too, there was just the vast emptiness of the dark sky and the way home seemed an impossible journey. Where exactly is home? How can I build a home? I am scared I will always feel this exclusion. I have many homes even as a child I had many homes, not staying in one home for more than 5 years or so at a time. I had many parents, strangers, teachers, friends, and I still have many homes, no one home is safe, though they provide shelter and warmth and support, ultimately I feel there is no one place I can land and be free. That really scares me. When I go to my people of colour homes, the places where I share the experiences of racism I find such comfort and laughter but then I experience homophobia and I have to take flight again. Then I find my home with queer people and experience disability oppression and I have to fly away again, so there is no home to go to. Even my physical home is oppressive, I live in a relationship that is so important and nourishing for me but at the same time that relationship is so damaging to me, like all of my friendships, it’s like we were set up against each other, so that the beautiful creatures that we are we still hurt each other. I wonder if the pain from this way we hurt each other is worse than the pain of being excluded from the dominant culture or whether it is more painful because it makes me realise that there is no one place I can rest. There is no true home where I can be free, to be myself in every way that I am, to bring all of me, with all my needs, and all my talents, to be all of who I want to be. To be truly free to dance.

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!? “