I never got to meet Kara in person. I was never even well enough to talk on the phone (though we did send each other voice messages and sometimes videos)
I can’t share the memories many people can
Our friendship consisted of two bedbound souls connecting mainly through messenger
We were very close and it was a very meaningful friendship, but when I was thinking of writing a memorial, I struggled to know what to say
All the adjectives which so justly applied: kind, honest, inspiring, creative, generous, brave, strong, loving, they sound like the list generally trotted out after someone dies. And while every individual is remarkable in their own way, my list of Karas commendations (and other people’s ones of her) are not rose tinted or exaggerated because she past
In fact there is nothing I can say of Kara now that I would not and did not previously say and its all inadequate in summing up just how pure she was, how much good and grace she exuded
In fact, I was practically star struck from the moment we met.
Unless memory deceives me, we met through the 25% ME group when she was looking for images of bedbound sufferers for her documentary. I thought she was doing such a wonderful thing
I used to tell her I would completely overwhelmed by her talent. For eg. I felt like i was fangirling when we got to message and when I was able to work on her album artwork
And then it occurred to me that while I had not had the privilege of meeting her in person, I could not have more closely followed her life for seven years we were friends (excepting the times I was forced off my phone by ME. But even then I caught up)
I used to say that I went on facebook for her (and for Alley who is sadly also passed now)
Given how avidly I followed what happened in her life, I felt I was in a good position to write a list of highlights from the time I knew her
So much of her time was defined by suffering and by trips in and out of hospital. And while I feel like she would, for the sake of awareness, want her reality known to the world, I personally don’t think that she would want her loved ones to focus on in their grief.
She had so much she was grateful for and accomplished so many wonderful things
So here is my list:
> When Kara got an old boat, put it on her lawn, and transformed it into an incredible garden, half vegetables, half flowers
> When Kara, who let local children collect her chickens eggs, covered them in edible gold for Easter
> When Kara, for whom pain killlers where ineffective and insufficient, discovered that VR headsets were being trialed in hospitals to reduce pain.
And she launched a fundraiser to get one for herself. And her target was smashed within hours.
When she used the VR to swim with dolphins and discovered it was remarkable in helping with pain
> When Kara worked with a local artist to transform her bedroom window into a stained glass artwork. She used colours so she could tolerate better and managed to have her window open and left such a wonderful piece behind her. It was one of her many inspired ideas
> When Kara managed to create enough paintings from her bed to have a local exhibition
> Of course everything about her album and songs, which is so well known it needs nothing extra from me
> All the joy she experienced with her family
Particularly in my mind, the day two year old Freddie managed to call her by himself
Just on a final note, I will miss Kara more than I can say. Honestly, I’ve already been missing her before she past as she got to ill to communicate. She tried to send more than was good for her I know. I received voice messages were she could barely talk and was clearly really struggling.
We shared much in common. We met when I was lower down in very severe ME. It’s a hell there that few can understand. And the shared struggle creates a strong bond. She helped guide me through trying to get enough care. We both lost our best friends at a similar time, and tried to fill the gap in each others lives. We both have little nephews and wonderful sisters called Emily. We had similarly close relationships with our Dads (I lost mine 18 months ago). We were both struggling to be artists against the limitations of severe/ very severe ME. And despite me being an atheist and Kara being a devote Christian, we shared a similar and very strong sense of ethics
I hope others can get something from my writing above. It has been building in my mind ever since she died
I am so sad I cannot go to the funeral but so grateful the family is doing everything to make it accessible from bed
Ruth Braham
Thought
