I haven’t been keeping up. I’m a tumblr failure. I haven’t managed to get around and like enough posts or blogs or connect, although I stagger over to the computer periodically to check the things that do appear in my dashboard.
That is what chronic illness will do to you, mess up even the most simple of your plans…
I’ve been mired in legal battles as well, which (gawd help me) should be winding up, but not until Every. Single. Attorney. working on my behalf (i.e. for the sick and disabled and royally screwed) tried to bilk/steal/finagle tons of money out the back end of the settlements.
This post, on suicide and chronic illness, comes from Black and Chronic, whose posts I have often found to be deeply moving. She does not have a reblog feature, so I am pasting below. Additionally, she has an online (UK) fundraiser for medical care costs.
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.
Everyone who is born holds dual citizenship in the kingdom of the well and the kingdom of the sick … Sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place. —Susan Sontag
"There is really no such thing as the ‘voiceless.’ There are only the deliberately silenced, or the preferably unheard."
~ Arundhati Roy
As of June 2012: “The richest 300 persons on earth have more money than the poorest 3 billion.”
source - Senator Bernie Sanders
There have always been expendable humans, those rendered less valuable than others, to be used or thrown out in various ways (from the inquisition and its extermination of 5 million women to slavery, etc. etc.).
When I first got sick it was a shock. I was just thrown out. And no one cared. Everything that was supposed to work, from my supposed employee rights to Social Security to my family’s love and support, not only failed me but clearly was never intended to “work.”
As of June 2012, the richest 300 persons on earth have more money than the poorest 3 billion (source: Senator Bernie Sanders). In the context of a fact like this, the concept of “more jobs” (among about 3 billion other things) is outdated. Clearly, jobs are something to be created, and not something needed by the status quo, even in the way human bodies were once needed for picking cotton or working factories.
So it’s become clear to me that my personal illness matters even less than I learned with those initial shocks about what happens to the ill in our society. The eradication of the middle class, which is happening globally but especially speedily in the U.S., is not going to be something that matters, probably unless those put-upon and cast-out bodies take to the streets as is happening more and more frequently around the world. And maybe not even then. This many people — we are just not needed. The sick, infirm, poor, elderly, disenfranchised are falling off and dropping like flies. In the world of global capitalism, we are just not needed.
Wangechi Mutu, Cancer of the Uterus, 2005
From the Saatchi Gallery:
Wangechi Mutu’s collages seem both ancient and futuristic; her figures aspire as a super-race, by-products of a troubled and imposed evolution. In Cancer of the Uterus, her figure is an ominous goddess; pasted over a pathology diagram, her portrait is diseased at the core. Mutu uses materials which make reference to African identity and political strife: her dazzling black glitter is an abyss of western desire, which allude to the illegal diamond trade and its consequences of oppression and war.
I’ve been interested in how artists depict disease or use disease as a way of confronting a multitude of issues. It is actually difficult to tease good images out, ones that do justice to both bodily suffering and the other issues they confront.