Letter from the North

Fear, Day 3, 24-Nov-2017

Fear vs. Brave

I am intelligent, very logical and thanks to being autistic, used to my emotions coming out of nowhere.

That puts me in a “relatively” good place to write these blogs, but it does not mean I am OK.

I am terrified of where this cancer is taking me, and I am terrified of dying. Please don’t mistake what you see on the outside (what you read in this blog) for what is going on inside.

  • Most of the time I manage to stay in control of my (logical) brain, being autistic, this is normal for me.
  • Sometimes emotions hit me like a sledgehammer, coming out of nowhere;’, again, being autistic, this is normal for me.
  • When Teresa (or anyone else I encounter) is upset, I pick up her emotion and it becomes mine even if I was OK; being autistic, this is normal for me.

I am not being brave.

I’d hate anyone reading this blog or our postings on Facebook, to think I was somehow brave, I’m not. I am autistic and that means my responses to things look different, but when you look deeper they are the same, they just look and sound different.

If you were to talk to my son (number 3 son) you’d think he doesn’t care, but he is also autistic and he understands me better than almost anyone. He understands why I am so logical and pragmatic about it, because that is where he is.

Most other people in my life are surprised by how I seem.

Autism can (and often does) make life very difficult, but there are a few circumstances, and this is one, where it gives us a coping facility not available to others.

So, I don’t want anyone reading this thinking I am super man (more accurately, super non-gender specific person). I’m not, I am very frightened.

What I do have is a disconnect between my ordinary thought processes and my emotional ones, the emotions run on their own timeline and appear and disappear without me knowing why. I could burst into tears right now because I am going to die, or because my eldest son (number 1 son) refuses to speak to me, or because I had a bad day 3 weeks ago because of what someone said to me.

Because of this disconnect, I am used to managing my emotional responses and not letting them drive my rational mind.

So, I appear, cool, calm, collected and in control. And, to be fair, a lot of the time I am. But underneath that I remain a very frightened Bean.

Typing makes it much easier than talking would. Indeed, talking to me face to face is quite likely to result in tears.

Because I can look at this calmly, it means I can describe quite clearly what is happening to me. However, the emotions are there too, even if I describe them in a logical fashion, they are very real and very present.

You can’t see on the page all my tears while I am writing or editing. You can’t see the tears running down my face as I read your comments, indeed as I write and edit this paragraph (but the rest of this blog was fine, no tears at all, go figure).

Postscript

Having cancer that is survivable is incredibly scarey. Having cancer that is terminal is also very scarey. Knowing you only have a few days, weeks, months or years to live is scarey.

I’m not immune to that, but I hope that I can help shine light on that fear and the process I must go through and make it a little less scarey for others going through it, especially for their friends and family. Most of all, if there are autistics involved (on either side of the equation), please try very hard to understand just how different this can be for them and be quick to understand difference and slow to criticise what might seem like unthinking or uncaring or inappropriate reactions.

Tomorrow the dilemma of having high blood pressure and one of the many side effects of treatment with Pazopanib. I’m hopefully off to the GP this morning to discuss this.

The Bean, at home, Fri 24-Nov-2017.

4 Comments

  • Bridgette and Richard

    Dear David – Bean, You must be struggling with the worst, unimaginable fears and realities at the moment, but there are areas of light you can go to, to sustain you. A talk with a counsellor may help share the load, a priest? Some yoga, spiritual healing, and meditation? We send our wishes to you, that you will always find serenity. Enjoy nature if you can – take photographs. When we immerse ourselves in nature we increase our alpha waves, for relaxation and healing. by 40%. It may help, distract you from the inner turmoil you must be experiencing, and alleviate some of the pain Take care. Bridgette and Richardx

  • Kate Mole

    Dear Bean,
    Of course you are terrified of dying – that’s natural. Timor mortis conturbat me, as the medieval poet said. We all are. And having cancer is scary in any case.
    Would it help (maybe you are already doing this) to collect the information available, from your medical team and from all the big cancer research websites, plus ones specific to you, and start compiling facts and options? Then you can assemble scenarios: If A happens, I can take Option 1 or Option 2. If B happens, I can go down Route 3 or Route 4…. This might help you to regain a measure of control over the situation, and to feel less adrift. Just a suggestion!
    And of course, I’m thinking of you both and admiring your attitudes and your openness. And hoping that things go as well as they possibly can.
    Very best,
    Kate. x

    • Bean

      Hi Kate,

      I wrote the “fear” blog because it is something else that is not generally talked about, yet we all do fear death (well most people anyway).

      My concern was that my logical, calm way of exploring my situation could sound as though I am absolutely fine with what is happening. That apparent calmness would be a horrible thing to have ’out there’ being read by someone who is terrified of dying.

      My fear (emotional brain) and my logical brain run independently from one another and that’s what lets me sound detached, and often be detached, whilst simultaneously in a state of distress.

      Planning is what my brain does without me trying; I am very involved in my treatment, understanding it and giving it the best chance it has to help me. I have a list of questions for the oncologist about his chosen treatment to help me understand why he didn’t consider other possibilities.

      The fear doesn’t (yet) paralyse me, but it is always there; I don’t deny it, but I don’t let it take me over, that would be to let the cancer bully, …, win and that’s not my way.

      So, I accept my fear, it is a natural part of what I am facing, it may well get worse the closer I get to death or it may decrease, but whatever happens it will never take me over.

      I found Irvin Yalom’s Staring at the Sun a very helpful book on fear of death. I read it three months before any of this came up and it helped me have my head in a better place when I was hit with this news. One of the most useful things, for me, is that he talks about the fact that, once you are dead (assuming you don’t believe in an afterlife, and I don’t), there is nothing to fear. It is the survivors who have to live with the consequences and that is why I am very focussed on trying to provide Teresa with the best support I can.

      Bean

  • Hilary Roberts

    I am very moved by how caring you and Teresa are to each other. I don’t really know you as a couple, I met you separately – you at Slow Music and Teresa at the folk club. I am so sorry this has happened to you both.
    I was interested to read about the way you experience emotions – that happens to me too. I don’t think I am autistic, but I do suffer from C-PTSD, which, as you mentioned, has similar effects. I sometimes get angry about three days later than the thing happened.
    Your blog is interesting, thank you for writing it. Good luck, I hope things work out better than average; be nice if you were in the tail of the distribution. Love and best wishes to you both. H xxx

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