Saturday, 31 December 2011

Floating boats

Mum died on the 5th December 2011. Just under a month ago and so on the last day of the last month of the last year that she was alive I wanted to dispel two myths.

The first is the most painful. Contrary to popular belief when your mum dies after having lived through Alzheimer’s for a decade. It’s not, actually, a relief.

It’s called the long goodbye for a reason.

Alzheimer’s disease takes someone you love from you in the neurological equivalent of death by paper cuts. The changes are tiny at first but they are permanent and as they grow in number they cause an irreparable haemorrhaging of personality. They leave you yet remain behind so that the person you are confronted with doesn’t know you, doesn’t love you and cannot connect.

That’s them. You on the other hand remain the same. In my case the bond with my Mum which was forged in years of violence and anger and pain was stronger than ever. It wasn’t our violence and anger but it was our shared pain.

Her life I detailed in my Eulogy which I blogged, but it is the relationship of love which I’m talking about now because that didn’t leave me as it left her. As the plaques formed in her brain taking her into the darkness it made me understand what faith means whilst ironically making me realise unequivocally that there was for me, no God. To love with no hope of return, with no reciprocal word or gesture, with no recognition or reward is to me the only faith that counts

Lovely people emailing me after she had the stroke 9 days before she died asked if as an atheist I would mind if they prayed for me. This was a touching offer, which said so much about their kindness. They knew I was suffering and they wanted to help. Kind people like this I have all the time in the world for.

Conversely I discovered people who have found my blog, which often details the tough days for Emily, praying that she be “cured” of her autism. This is a little much for me.

Not because it will make any kind of difference these prayer groups could quite frankly get up and do the Tellytubbies Boom Boom dance for all the good it will do, but my point is this-If you believe yourself to be religious and in your view God has “made” Emily autistic then what kind of faith is it that now says “actually that’s great but can you make her with a little less disability? Thanks that’s great.”

Isn’t that treating their God like some kind of ecclesiastical chef with high maintenance patrons?
In any case it really makes no difference to me.

The second myth is that religious belief, at a time of bereavement always brings comfort. I'm sure it does- if you're religious.

As I'm an atheist, unsurprisingly, it doesn't.

My experiences in the last 3 weeks have brought me many, many assurances from well meaning people of Mums place in heaven. More worryingly, that she is looking down on me and watching over me.

These assurances have always been unbidden. They are kindly meant  but it serves no useful purpose other than to make me feel acutely aware of just how very dead she is. Plus Mum wasn’t one to listen in to other people’s conversations.

No promise of my mum  invisibly tiptoeing through my house brings me anything positive at all. In fact it is through my deep lack of belief, my conviction of there being no god, that much more comfort has come- because I’m not wasting time wondering about that, I’m thinking instead about the time we had.

I just miss her; at times so much it stops me in my tracks. I loved her so much you see and now she’s gone. Please understand I’m not making a judgement on the belief of the others, do what feels right for you, float the boat you need to, I’m not attempting to torpedo yours from mine. I’m just taking a little time to make mention of the other way to cope with death. 

One that makes no promise of celestial reconciliation but a simple assurance that the love you feel remains the same. Oh and please   don't tell me what a relief it must be that she's died because it really truly isn't.

Irrespective of the intention behind these words believe me when I say Alzeheimer's isn't a sedative against grief. It doesn't make anything easier.