Fourth of July

I am in America. I am astounded by how much I like it. This is quite unexpected. I will write about it another day.

I am in the lovely home of my high school friend, Barbara. She is sitting at the dining-room table with headphones on, working, even though it is the Fourth of July. Barbara works for a local company that provides home care and hospice services. She is one of my favourite people in the world. She is feisty and strong, but so, SO gentle and wise. I have her permission to share an email she sent me a couple of months ago, when I asked her how to create space to talk about death with the dying, without dictating the agenda. Please read this, even if you are not engaging with death. It can apply to talking to anyone who is in pain of any sort.

This is what she wrote.

Hi Kirsch,

          I’m responding to you via email vs WhatsApp because the answer to your question is too big for a text. Hope that’s ok.

          You asked about ‘creating space’. I hope I don’t sound too preachy. ‘Being’ with someone in pain, is something I have grown into. It’s a squirrelly thing. It can easily become slippery and awkward. In my work with the dying, I’ve learned that brushing off difficult conversations is horribly isolating for those who need them.

          Regarding Sharon, it really depends on where she is, in her process. What is your intuitive sense?

          From what you shared, it sounds like she still needs distraction, small talk. Initially, this is fine. It’s neither right or wrong. The news is fresh, and she probably hasn’t let it sink in yet. She has to guard her psyche. She may be resisting the space you want to create for her, for self-preservation. If the superficial chatter continues though, it might be helpful to simply state the obvious before you leave, “I know we talked about a lot of things, except the one thing that’s heavy on your heart. Please know, I’m not afraid of that conversation. I can be with you in those dark places.” That may be all she needs initially, just knowing you are out there. Open the door.

          More importantly, going into any situation where there’s deep pain, means you have to be very comfortable with your own. There is nothing light-hearted about dying, and as the living engaging with the dying, not reverting to the silver-lining can be pretty unnerving. You have to be ok with having no safety net. Deeply ok. People know when you aren’t. They will try to protect you, (actually they are protecting themselves from your discomfort.) If you aren’t comfortable with that deep, incurable pain, you have to just say it. State the obvious. Be vulnerable. Sharon is, she has no choice.

          When I approach a family or patient who knows the end is close, I do my best to enter the room with my heart completely open. It takes some preparation because we can’t function in our world that open. However, it’s an extraordinary relief for both them and myself. The connection is vulnerability. It feels like the greatest gift I have to offer another, the courage and ability to  connect with them during their most vulnerable time. The truth is, you and I don’t know how they feel, unless you know you will die soon too. But you have felt pain, deeply, and that is what you have to offer them in that moment.

          So ultimately, your comfort with pain and vulnerability is the key to creating the space Sharon needs.

          There are lots of video clips on similar ideas, but I can only talk of you my own experience with certainty. I’ll forward a few clips I did find meaningful.

          I’m not sure if I answered your question, Kirsch. Death is isolating. Ultimately, we die alone, but being with someone in the in between moments is everything, and that goes a long, long way.

Hugs,

Barbs.

️

I got a whatsapp message yesterday

It concluded “I really appreciate your friendship”. It made me pause. I have known her for about three weeks. She is a complex and interesting woman. Our relationship is light in some ways and very intense in others, but I hadn’t really thought of her as a friend.

Sharon has acute myeloid leukaemia, a particularly aggressive form of the disease. I am one of the 27% of people who have survived it.

I didn’t blog about it at the time, and I kept it off facebook and Twitter. But I have insights and experience that need to be shared. How it was for me…the small indignities as much as the unspeakable pain. I need to talk about these things now. I need to process the last six months of 2017 in a way that I couldn’t while I was dealing with it.

So I visit the sick and dying – unusual for an atheist. I take sanitary towels and bottled water. I talk and I listen. Which meals on the Fedics menu are the worst… which isolation ward is the best. I show pictures of my tongue, and my legs, taken in September last year. I talk about death. And gossip about the nursing staff.

Sometimes, afterwards, I get into my car in the hospital parking lot and put my head on the steering wheel and sob. But mostly I am quietly centred by the visit. It is therapeutic for me to be back in that space in a different role.

Yes, Sharon is my friend. And I appreciate her friendship too.

Nahoon

I snorkelled for the first time today.

There is a whole, other, amazing world right there. You just have to look.

Picture me… 49 years old, born and raised on the most beautiful coastline. Regular beach-walker. Happy sea-swimmer (if the current from Mozambique is close to shore)… had absolutely no idea.

Those of you who knew, and didn’t tell me, had better be working on your excuses. There are so many fishes! And to the woman who showed me… thank you.

So I learnt about that today. And this other thing: you can feel very strongly about losing something that you haven’t had. I could write a poem now. The first line would be: “The Weimaraner was beautiful”. I’ll spare you the rest. 🙂

Hullo blog, it’s been a while…

I am home from the ballet – a rare treat in this town.

I haven’t eaten but I can’t be bothered – a rare thing too!

Since I am in the business of rare things, I thought a blog post would be in order. 

There are things I haven’t reported here:

Thabisa moved out on 8 July last year. I remember, partly, because it was my parents’ wedding anniversary.  Partly because I made a note!

 Our relationship ended a good six or eight months before then, but… you know… logistics.
This blog was about us… about straddling two worlds, so I haven’t really known what to do with it since then. I still don’t, actually.

She sent me a message today saying that someone had posted a picture in the Eastern Cape lesbian chat group and did I know anything about it. Here it is…

Can you see it? The picture of us at the bottom left? Apparently the poster is displayed in the Port Elizabeth CBD. Bit of a cheek, really… JKN did not make our garments – Thembeka Metele of Iza Crafts did. I think I might have to contact JKN and ask where s/he got the picture from. A task for another day…

Resolutions

1. Read the Koran (start to finish)

2. Get the Jojo tanks installed

Doable, I think.

Sunday night

I have always been prone to Sunday night syndrome. And it is Sunday night, so take this post with a hefty pinch of salt.

I have had it. I am just so, SO disappointed that I can hardly articulate it, but I will try.

The date for Mdantsane Pride was set at the beginning of the year. It was advertised widely on social media. People were excited – from the response, I expected an enormous turnout. Thabisa worked really hard, and I helped as much as I could. She did the organisational stuff – took time off work to attend endless meetings with Law Enforcement about the arrangements, and handled liaison with the branches and other organisations. I did the fun stuff – commissioned a balloon rainbow, arranged for flags to be made, etc. It was time consuming, but we were both really looking forward to it.

The march was scheduled to start at 12 noon, but Thabs asked people to gather at 11am so that we could paint posters together.

At noon, when we were scheduled to march, there were 25 people gathered. That isn’t a typo: TWENTY-FIVE!

The police didn’t pitch.

There was reluctance in the group to march without the police. “It is the township, not the suburbs,” someone said to me, “there is serious intolerance here – we are not safe”.

While Mfundi kept the vibe going, Thabs and Rave spent ages on the phone trying to get through to Law Enforcement to find out what had happened. Thabs had left, at home, the contract that she had signed with the Traffic Department, so it was difficult to make progress. At 1.30pm I left to go to fetch it. When I left Mdantsane to go home, there were 27 people present.

I didn’t go back to Mdantsane. I phoned Thabs and gave her the telephone numbers on the contract, and said that my instinct was that the police would not turn up and the march should be called off. She said that she would discuss it with everyone. I asked her to let me know.

She says that she was so busy dealing with the issue, and trying to hold things together, that she didn’t really understand that I was waiting for her to call me back. I settled down with a series. After an episode I called to find out what had happened. It turned out that the march had taken place. Without police protection, a tiny TINY group of people marched from Mdantsane City to Kasha Circle, waving flags and asserting their right to be who they are.

I am so proud of them. They did it.

And I am SO disappointed in all the people who said that they would, but didn’t… the people who travelled from all over the province for the after-party. Apparently Jeff’s place was packed to the gills last night with happy LGBTI people. Seriously? SERIOUSLY? Explain it to me, please, people… explain why you will travel to PE and Knysna and Durban and Soweto to go to those Prides, but you won’t support one in Mdantsane? WHY? Why do you all want to buy flags (and grumble that only 16 were made) but you don’t want to wave them in Mdantsane? WHY?

I am so over it.

People at a wedding