Foam Slippers Redux


I am not good at anniversaries. Even my 21st birthday was spent in the cab of a lorry in France. My friend Helen had got me a bottle of Orangina. Orangina was GREAT. We didn’t have anything as nice in the UK. As a kid I thought the war was AGES ago, but as the years went by I realized that even in the 80′s we were still very post war in lots of ways.

i was given these to wear in hospital. i kept them and brought them home to photograph

Anyway, last year I took an overdose of pills and ended up in the local mental hospital. Via the general hospital, I am told, I don’t remember it. My memories of that time are vague and very partial.

I’d had a hard year. Every year since I got ill has been a hard year, and I thought I knew hard years. I don’t suppose I was ever entirely at home with myself, but I had some good times, and with health comes the promise of future. Without health, well, not so much. I’d moved house in the early autumn. Ten had done all the stuff I couldn’t, and the difficult summer seemed to hold that seed of hope that moving might improve things. What I didn’t expect was a flare up of every single thing that fibro had ever brought me. Weeks of being bed bound with cystitis, constant running migraines, all sorts of everything. What had happened on top of this was that this time the previous year, going into the hardest part of the year I had started having a lot of suicidal thoughts and had gone to the doctor’s in a panic. I needed some support and was given it, and then had it taken away again. This played out over a few months, and in the early summer I saw a psychiatrist who said that I was taking too many different medications, so I started coming off them – unsupervised. The psych was on a ‘rotation’ I was supposed to see another one but that never happened. I moved without medication, knowing I was spiraling and since I was moving boroughs not only did I have to sign up with a new GP but would have to start from scratch with psych services.

It was hard to get appointments. I had rising panic. I felt like I was shouting for help – who knows, maybe it was just a whisper? Or maybe my shouting is someone else’s whisper. At any rate, eventually I had a home visit from *someone* – I forget who. I told her I needed a CPN (Community Psychiatric Nurse) to supervise me going on meds, since I was afraid of becoming manic. She told me that I wouldn’t get one unless I was hospitalized. By this time I heard ‘hospitalized’ not as  ‘turn up at hospital and tell them you need in’ but as ‘take an overdose and you’ll either die or get help’ which sounded like a win/win scenario to me.

This time last year, or, to be more specific, a bit later than that… I wrote this post and made light of it, rather. I was ready to show but not to tell.

I wanted to write this for two reasons. One, in a show of solidarity with all the other people in the UK who are currently literally being hounded to death by the current government’s sickness and disability ‘reforms’ and another to say thank you to everyone who helped me through that very dark time.

Ten, Hazel & Che, BJ, Lottie, Ian, Al, Lucy J, St Ann’s Home Team, my lovely friends on the interwebs, everyone who came to my birthday, Steven next door, my dad who wasn’t told at the time, but who takes me as I am whatever state I am in, my mum, my brother, Julie, who gave me holiday time in Brighton, and my darling little Poppet, this one’s for you:

This year has been so much better. Many difficult days, but better, always better than last year.

Tears and Anger, Cancer, Pinkification, and Death


Thursday, November 22, 2012
When was the last time that you cried?  Why?

I don’t cry often. This is not because I am a hard hearted shell of a person, but for a very good practical reason – if I cry more than a couple of sneaky tears then I will get a three day medication resistant migraine. Such a migraine is worth remaining dry eyed about. This means that I don’t cry if I feel sorry for myself if I can possibly help it, and I only allow those tiny sneaky tears to slither out if a film, for instance has been very moving.

The last time I cried real tears was, however, fairly recently. For some reason an entire bunch of friends and friends of friends have died this year. I still delude myself that I am quite young most of the time, but maybe 50 is an age where these things accelerate? I don’t know. Maybe it was coincidence.

Whatever it was this wasn’t the first, but, for me, it was the worst. Not only was this person a close friend for a couple of decades, but, quite horribly, she had fallen out with me and we hadn’t spoken in a few years.

It was news to me, then, that she’d spent the past year living and dying with cancer.

Social media has it’s place in mourning. The death earlier this year of Tutu Tedder was metabolized by many of us through Facebook – we shared stories, we consoled each other. Then again, we had known she was dying for a fair while, and we also knew that she wanted to share her cause – against the ‘pinkification’ of cancer with as wide an audience as possible, so she died something of a public figure. Her girlfriend has chosen not to delete the account, so I periodically get suggestions from Words With Friends that I could ask her to play with me. Wouldn’t that be sweet?

tutu pictured on a ‘cancer sucks’ t shirt. click through the image to find out more

This was different, though. My friend had fallen out with me BF - before Facebook, so I wasn’t friended by default to her (I am nominally friends with a few people who it would be awkward to actually talk to, but I’m guessing you know how things are on there, it’s entirely possible to ignore someone or be ignored for indefinite periods of time).

I’d been up in Norfolk with an ex of hers, and I hadn’t even been online yet – I’d just got home and was communing with Poppet and faffing around. My friend called me in tears and told me the news – she’d read it on Facebook. Over the next few days I heard similar stories from people who, like me, didn’t know she was seriously ill, but who were friended to her and kept seeing odd things posted to her wall… with the growing realization that these things were not bad taste jokes but references to her death.

And almost immediately it was her funeral. Her family had come over and it had been arranged for the coming friday. It was going to be a trek, so Ten came with me, basically because I need shepherding – I get very tired and can’t manage travel alone. Along the road we met up with my best friend (I get to call her that, because we were best friends from school – I am not one of those creepy adults who go around best friending people willy nilly). We were a bit late, so we went straight in. Because we were late, and the place was crowded out, my friend and I were shown  up to a balcony floor. Not having seats we went down to the  front and crouched down. We held hands and little tears slid down our cheeks. When her sister spoke it was pretty unbearable.

But then the clincher. A mutual friend who is basically an emotion conductor crept down behind us and put her arms round us and she was BAWLING. This did not bode well for my stoicism.

You’ll have noticed that I am not naming names. First of all, there was the issue of the falling out, and second of all, while Tutu wanted people to know about her struggle and death it is evident from her behaviour that my other friend did not. I cannot know what she thought of ‘pinkification’ since I didn’t have the opportunity to see her before she died.

The sickly pink ‘awareness’ campaigns do not, however, save lives. By coincidence another friend of mine wrote a piece recently as a guest blog entitled Light the Pink Touchpaper and Stand Well Back. In the post @louisebolotin gives voice to a number of us who are fed up with being told that awareness involves wearing pink crap and equates to great strides in cancer cure. It doesn’t and it doesn’t.

I was sad to lose a friend who might never have spoken to me again in her life were she to have lived. She was an asset to this world. She  was a bright spark and a wit and a super intelligent. And I am angry on behalf of everyone who went through both of these women’s horrible terminal year with them.

No amount of ribbons or bunnies make up for their loss.

tutu. her cancer and her last cabaret


tutu having her head shaved before going in for chemo. (photo by ashley savage)

the image is from this article in the guardian. about the ‘pinkification’ of cancer, something tutu protested against with every fiber of her being.

“cancer sucks – fight it, love it, live it, survive it”

t shirt shows tutu after her mastectomy. you can buy one here.

i had to choose between going to the funeral or going to the wake, since it was all happening about an hour away – so that’s two hours travel plus the time there. already asking for trouble with fatigue, back pain and migraines, fibro is such fun. i originally offered to escort my friend hazel there, who is not good at mornings and is rather ill herself, but who had been tirelessly at her bed side until her death, so i wanted to make sure she got to the funeral, but it turned out that there were offers to drive her, so i decided to go to the wake instead, since there would be people there i hadn’t seen in a decade, and others who i see seldom, so i wanted to be able to spend some time with them and not just go to the funeral and have to leave straight afterwards.

i may not have gone at all if it wasn’t for ten, who worked out a good route, checked the pub was dog friendly, and escorted me and wrangled poppet on the two trains a bus and a walk that it took to get there.

she had asked that people release balloons instead of bringing flowers, so there was a bit of both and lots of people dressed up to the hilt, and hardly anyone wore black who wouldn’t be wearing it as a matter of course, and even some of them busted out the colours for the occasion.

as well as setting up a punkcancer facebook page, people who knew her shared stories about her on her regular page and by tagging her. somehow this seemed more gentle and under the radar than having everything on a memorial page. from what i have heard i think everything to do with her illness, her death, and the celebration of her life was done with a lot of kindness and love.

somehow i have not been to many funerals. i went to a couple with my dad, who tended to know his elderly relatives, and they were rather hideous affairs, like visiting a dole office. impersonal, dull, and cheap. i had the impression that this was what cremations were all about, but hazel told me that the celebrant at tutu’s funeral told a funny story about her which i had read on the fb page;

I remembered last night that Tutu was the person who introduced me to mashed potato with the skins still on. “I could give you a bunch of crap about vitamins…” she said “… but seriously – who the fuck has the time to peel potatoes?”

and had seen the photographs ashley savage had taken, and had talked about them from her own heart.

you can see them here. disclaimer be warned, they are explicit, and include some pictures of her on her deathbed. so if you feel at all triggery about any of the issues to do with cancer, operations, chemo, bereavement, don’t say i didn’t warn you, but seriously, click through, and watch them as a slide show THEY ARE AWE INSPIRING.

all i can say is that i guess most funeral celebrants don’t see that kind of evidence of the person they are talking about’s  extreme vivacity. even the photographs of her deathbed are alive with love and creativity.

i sat with old old friends. i managed an hour and a half. then ten whisked me away. poppet had done her glad handing – lainey, a long time dog owner, suggested i let her off the lead, and she had a great time, bringing doggy goodness to people.

by the time we reached the station i was utterly exhausted. i would never have managed without ten. today i am still in bed and it’s 7pm. i took the dog out for her first walk, and i will take her out again in a minute, and then i will go to bed properly.

the pictures of tutu on her deathbed are amazing. hazel kissing her, and her girlfriend erika laying her hands on her for the last time made me bawl.

i’ll leave the last words here to tutu – from her beautifully produced memorial card

“I just surf right out of my wardrobe, becoming whoever or whatever I want to be. I am a figment of my own imagination.”