My best friend died

It’s that brutal. She’s gone. And on Mothering Sunday too….. of all the fucking days to go.

Let’s be clear, she was never going to get better you see, she had motor neurone disease. All those years ago when we were throwing buckets of iced water over our heads and proudly posting it to our social media declaring we would donate money and nominating new people to take part, this disease was lying dormant in her fit, agile body waiting to strike. I’m not a scientist so far be it from me to speculate how it started, why it started or even when it started…. but start it did.

I remember vividly her walking into my house, the exact spot in the hall where she stood and even what she was wearing and she said “my hand has gone a little bit weak” and with that she squeezed my hand to demonstrate the weakness. As we did, we joked that it was “probably motor neurone disease” in the same way that whenever I got an ache or pain I assumed I had cancer…. “oh yes you’ve probably got knee cancer”  or whatever bit of me was assumed to be ailing that week. But the awful, terrible irony was that she actually did have it. Again, I remember taking the phone call at work from her when she got her diagnosis. Her sob as she told me, “I’m going to die…. I have motor neurone disease”. My utter bewilderment because I just didn’t know what it was! I was so obsessed with dying of cancer that motor neurone disease (MND) had bypassed me completely.

“What do you mean?” I asked

“They have said I will live anything between three months and three years” she replied.

“But it’s like MS isn’t it?” I enquired….. “people don’t die of it do they?” (again not really grasping the reality of it).

“Yes”, she replied “they do and I’m going to die”.

This was in October 2016. She died on 31 March 2019.

Initially we focussed on the practical. I helped her find out about what benefits and help she could get while around her everyone crumbled, shocked and stunned by her news. There was talk of drugs trials as she was only in her late 40s and not in the typical demographic to suffer with such a disease. I googled at lot of stuff about it, found out that there was a couple of typical progressions. It would either go limbs and then organs or organs and death. I couldn’t possibly say which is worse and my initial fear was that she wouldn’t want to either and would head off to Switzerland to end it early. Withering had always been high on her list of fears. We used to joke that she would never end up in an old people’s home because she wanted to stay young and sexy FOREVER. Sex was so important to her, she was such a vital human and to lose that from her life was one of the worst things imaginable. Later on in her disease when movement had long left her tired swollen limbs, the NHS handily provided a hoist and we joked about how it could be used as a sex swing and I hope she got to use it because around the time her limbs gave up on her she had also been quietly losing the ability to breathe on her own so wore an oxygen mask all the time, making understanding her quite a challenge and slowly her speech went the same way so I never found out.

She had such a lot to live for and she was the bravest woman I have ever known. The odd thing is that with such a slow and progressive illness I think I have grieved as I’ve gone along. Many times I would leave her home after visiting her and feel so sad, so very sorry that she was going through this terrible terrible disease. You can’t just chop a bit off, or irradiate it or blast it with chemicals, there really is nothing to be done for MND at this point in time. There were times when I thought it had halted, and she seemed stable but she was just good at hiding it from me. She hid a lot and I didn’t ask. I now feel guilty for that. My rationale was that I didn’t want to open a wound that I would then leave gaping while I carried on living my normal life while she had only her thoughts to ping around in her head. I will never know if I did enough or if she felt that I was any use with my constant wittering about house moves, divorce, exciting gossip and trivial nonsense but I can only hope it distracted her for a time and made her smile.

The end came suddenly and without warning. I had seen her 5 days before. I received a short text from her husband telling me she had died the night before. It hit me hard for about two hours and then rather bizarrely I felt such a relief and have done ever since. I have never seen such a cruel and awful way to die, admittedly I haven’t watched many people lose battles with diseases and for that I am grateful but to be locked into your own body, only able to move your eyes and all the while your brain continues to be as razor sharp as ever must have been the very worst thing any human being could endure.  Her husband and I, both of a similar mind, spoke only last evening about how we would have wanted to be morphined up to the eyeballs but she only took the very smallest amount just to take the edge of the pain she felt. I suppose having lost control of just about every other bodily function that was some way of keeping a sense of reality to her life.

Selfishly I am sad she is not with me and her family any more but I am so glad that the end has finally come and that she isn’t in pain and anguish any more.

What a wonderful privilege it has been to know Tracey Brown.

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