Advocacy for an individual
I was trying to find out what happened to some of my friends on Inspire who I haven’t heard of for a while. This can be difficult as a members use screen names and don’t always give many details to be able to identify them, and I have just realised that I don’t necessarily ask what their real name is. I knew that one friend was near her end because she e-mailed me to say so, but even though I had got to know her well, and had even sent her a teddy bear for comfort she had not shared her real name with me, so I will call her Spencer (after the bear I sent). I was sad, but in a way relieved that her long tussle with this disease had come to an end and to find that she had been released to a far better place, but I was really hit by the fact that there was no service.
When I first got to know Spencer she was in great turmoil. Her mother had recently died and her father was in the early stages of Alzheimer’s. She had not married or had children, and she had been the carer for her mother and was now the carer for her father. I think her relationship with her father was not an easy one before the Alzheimer’s and looking after him put a great strain on her because of his increasingly challenging behaviour, and she had been very close to her mother. I sent her Spencer to give her some comfort and a sense that someone was looking over her and cared because in real life she had very little support as she may have been estranged from her only sibling.
Sometimes we forget other individuals as we focus on our own concerns, life and causes. While it is right to advocate for real support for metastatic cancer (of any kind really) we should not forget to advocate for an individual who is vulnerable, frightened, anxious and who needs support. A support group should be about more than just queries about a treatment option, or scan results. A support group should be about each individual person and above all else is about life in general and not just the type cancer the group was set up for. I felt so connected to Spencer because in some small way I knew her story personally. I cared for my mother until her death, I have no husband or partner, no children and few friends that support me, but really only one I feel I could totally rely on. The on-line communities are my main social network when I am not at work in the college holidays, and when I am not at work I become very lonely and isolated but I find it difficult to reach out to people who have families and relationships because I know that I am very low down their priority list, and perhaps rightly so. But when the only people you talk to are those who work in the shops you go to, or the receptionist at the hotel you stay at, you can forget that there actually are other people in this world, and to hold a conversation is something rare. These are my conversations.
I have had depression since I was a teenager, and I am now 52. I regret not reaching out to Spencer more than I did, because I have a rubbish memory these days and that was one of the things I thought I would remember to do some time and didn’t. She didn’t answer my last e-mail, but then she had to get someone to help her write that last one to me … I should have sent her a card immediately as I had her address and although she was in America and I am in Britain it would have reached her … maybe. Why didn’t I do more to support her in her depression and loneliness? Maybe because she reminded me of myself too much.
I guess what I am trying to say is that advocacy should not just be about a cause, but also about the individuals who make that cause so dear to our hearts. The cause IS the individual.
Farewell Spencer, until we meet in ‘person’.
This just come up on a Thought For The Day e-mail!
A pessimist, they say, sees a glass of water as being half empty; optimist sees the same glass as half-full. But a giving person sees a glass of water and starts looking for someone who might be thirsty.