Tears and Anger, Cancer, Pinkification, and Death

Standard

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.

We’re all just walking each other home

Standard

We’re all just walking each other home.
— Ram Dass

Tuesday, November 13, 2012
What is the bravest thing you’ve ever done?

To be brutally honest, I am often brave. Getting through the day with chronic migraine knowing you’ve got it all to go through again and again is far braver than anything else I have ever done, I do it often and I tend to do it alone, without any witness. I appreciate people who really see me suffer because even that experience is ineffable once it is past.

On the other hand, what looks brave might not really be brave. While ordinary acts like leaving the house might take real gumption, I, for instance, rather relish public speaking whenever I get the opportunity. Yes, I was physically ill the first time I gave a lecture, but the buzz is amazing and ‘nerves’ are really the same thing as excitement.

Acts of kindness can feel brave – one does not know in advance how they will be received. I think I was fairly brave to volunteer to visit a senior Buddhist Order Member who had had a stroke – I thought he would quite possibly find me naive and annoying. As it turned out it was a teacher I knew from my earlier days of learning meditation, and I had rather a good rapport with him but I didn’t walk into the hospital knowing it would be him. And I certainly didn’t expect to ‘get’ anything from the experience, but I did. He was an amazing man. While he was teaching there was this one time when he said he couldn’t remember which meditation he should be teaching and he mentioned in passing that this was probably because he had a brain tumor. I didn’t see him for a few weeks, so when I did see him I was relieved that he was alive! I asked about the tumor. He said that he had probably had it for years, but that it had only been recently diagnosed because he’d blacked out and someone thought to look. It seems that when he was younger he found it difficult to read, and was considered rather dim. His story humbled me so much, and heartend me, too. I’d just recovered from several months of near constant brain fog, after my health tanked and I had been signed off from my job. I couldn’t even follow radio or TV programmes, I just had the radio or TV on for company. I had really prized intellect in my former life, and considered my brain to be my best investment. Yet it didn’t save me from becoming ill. I was so relieved to find something I could learn that rather bypassed brain work, and to meet someone so very wise who was intellectually challenged.

When he died he had fallen out of bed. At the head of the bed was the commode that he used. It is entirely possible he spent his terminal moments on this earth with his face on rather a grubby carpet with a view of the underside of his toilet. For some people this would be a very upsetting experience, but I wasn’t in the slightest bit worried for my friend.

At the funeral there was an open coffin. It was the first time I had seen a dead body. I really wanted to get close and have a good stare, but I didn’t dare. A lot of people spoke about how he had been rather a harsh teacher, but that wasn’t my experience of him. To me he was only ever kind. I can only imagine he approached people on a case by case basis. His sister was too upset to attend, but his niece managed to say a few words on her behalf. She spoke about how, one new year’s eve, he had suggested a bike ride – the pair of them rode their bikes into the new year. What a lovely imagination he had, and what a lovely memory for his sister. I sat with the niece after the funeral and we talked for a while. Afterwards I received a letter from the sister, and wrote back as best I could. We wrote back and forth for a short while.

As well as being a sobering experience, spending time with him in his final days was such an honour.

*** 

I was looking for a quote to share with you and found myself collating an enormous collection of them;
elaine4queen.tumblr.com/day/2012/11/13

click through for lots of thoughts from lots of different sources.

***

How many Hindenburgs?

Today is kind of a Category 2 Hindenburg. Last night I realized that if I didn’t take a triptan before I went to sleep I’d be waking up migraining like crazy and have to spend all day dealing with things from that starting point, and that tends to mean I have to tread gently on the next day. Not just that, though, I am extra tired possibly because you can nip the pain in the bud, but that doesn’t necessarily mean you are not having the migraine. There’s a lot more to migraine than headache.

So, while I have a little rest and listen to Front Row here’s a picture of Poppet I took yesterday.

she isn’t always entirely elegant

No Sleep til Night time, Unbelievable Government Bullshit, and The AIDS Memorial Quilt

Standard

Good God! If I thought yesterday was uninspiring blog fodder, get today’s action.

Now, you may not know the joys of medication, but I take GET ON WITH YOUR DAY drugs in the morning and GO TO BED drugs at night. That’s right, I am actually Alice in Wonderland but more boring, older, and a bit fat. So what I do, when I get my medication, is to put them in those plastic holders with the days of the week on. I have two, a clear one and a blue one, so the clear one can be for morningtime and the blue one can be for night time. Annoyingly they start the week with different days, but that shouldn’t be an issue. However. More than once I have taken the wrong drugs at night when I am tired, and I have taken the GET ON WITH YOUR DAY drugs before bed, resulting in staying awake all night. I have done it the other way round, too, but only once. What I did to help this situation was to put the night ones in my bedroom, but when you fill them up it’s easy to forget and just put the whole lot in the kitchen drawer. SUCH WAS MY LOT, dear reader, when last night I went to bed. It took me ages to realize my mistake. I can report that nights are quite long when you are awake enough to be bored but not awake enough to do anything about it.

So today was a bit of a wash. It had rained a lot of the night and it was still raining this morning. Now, some staffies won’t even go out of doors to pee if it is raining. Poppet doesn’t mind a bit of rain, though she gets a bit itchy and needs to sulk under a blanket if she gets too wet. Luckily Ten was here, and he took her out in a break in the rain and played ball with her. But this afternoon, she really wasn’t interested in going out. We finally persuaded her when Ten’s bike tire exploded and he had to go into town to a bike shop and decided he’d take her with him. She loves the train and she loves shops, and it isn’t actually raining right now. However, there may have been a little something extra in the mix, because as she jumped off the bed she also projectile vomited all along the floor! Nice! Still, better out than in, I suppose. She does like a little casual dining when she is out, and not everything is within it’s use by date… even for a dog.

And that is basically my whole day except playing words with friends and watching episodes of Parenthood. I can’t wait til I can take my GO TO BED drugs and finally go the fuck to sleep.

***

There was something else today, though. I was reading some blogs and I shared this shocker on facebook.

“Iain Duncan Smith launched an astonishing attack on step-parents, single parents and LGBT couples this week in a move that could see welfare to work sharks brought into the family home and even the bedroom.

Speaking at a conference on social justice, the Secretary of State warned that in future the proportion of children no longer living with the same parents from birth would be a new government measure to monitor the growth of ‘social problems’.”

I mean, targeting step parents? In what way are they part of the problem and not part of the solution? This government beggars belief, I can tell you. Any smugness in comparing the UK to the USA is pretty much over right now. I can only hope that they really are wildly out of touch and we’re not just about to be forced to wear stars and triangles and so on, because seriously, this shit is scary. It inspired a fair amount of swearing in the thread.

***

While we are being bummed out, this might be the time to share the news that The AIDS Memorial Quilt has been digitized in it’s entirety.

Sobering stuff.