Not My Usual Stuff

I usually write lots of drivel about my latest jaunt across the world to some wonderful place (well to me they are) and in normal circumstances I would have been travelling to India for my trip of a lifetime next Monday. But these aren’t normal circumstance so here goes for something a bit different.

I am employed by a small Cornish charity which supports children with disabilities and their immediate families. Whilst we all lock ourselves into the comfort of our homes it would be easy to overlook just exactly how ‘self isolation’ can affect people. Cornwall is a still very rural county despite the extensive house building taking place. Without the support of local networks self isolation etc can become a very lonely experience.

The essay below has been written by one of the parents in our group and she will be identified by many who know her. I have changed the names to protect the innocent and I do have her permission to share this as I have a much wider audience than she could hope to reach. There are no other changes.

MY LIFE….. AND WHY YOU SHOULD TALK ABOUT DEATH


Some others see me as a useless piece of shite… say the wrong things… even scare them…. but I would like to explain why.
My life has not been easy…. no need for violins… just me explaining why I think the way I do… I am not immortal… I will die one day… and I like to state facts instead of burying my head in the sand.


Some of you do not realise that many years ago, I was married…. I got together with my childrens father… he already had a son called SIMON… SIMONS mum died suddenly when he was 1 year old… he was 2 ½ when we got together. I was told that I could not have children (endometriosis, polycystic ovaries and also ½ cervix taken away through cancerous cells)…. we were a little family…. I caught pregnant, developed diabeties, and TOM was 8 weeks premature….


Sounds like it was hard enough right?…… Tom was 6 months old when Simon got diagnosed with ALL (acute lymphoblastic leukemia)… the most common childhood 99% curable type….. 26 weeks we spent in Bristol childrens hospital…

Tom was stuck in his buggy or left in cornwall with my mum and dad… it was hard…. Darren was getting stressed and violent towards me too…. the only time his family visited was to raid the bank account…. I would spend 18 hours next to Simon then get back to CLIC house to find someone has nicked our milk… still we made it through and got home….


We tried to make things the best we could, got married with 7 days notice, Simon was 3 weeks away from getting the all clear…. then it returned with a vengeance. 28 weeks back at Bristol… 5 weeks in the bone marrow unit… I was given a choice, be with Simon or Tom…. NOT both….. I left Tom with my mum, crying all the way back to Bristol…. the bone marrow transplant failed and was killing him quicker…. I had to argue to get him home….


He died 22/03/2005. A child’s funeral is not easy. Going to 4 others that you got to know whilst in such surreal circumstances is hard. My mental health was shattered beyond belief.


While trying to help my husband through his grief, getting beaten when I had done nothing wrong, trying to protect a silent Tom…. well, lets fast forward a little bit…. I caught pregnant…. was given the choice of “it had better be a girl or you will have to abort it!” I can tell you I chose my baby.
I like to think Hope was Simons little present to say thank you.


My life was living back with my mum and dad, helping my mum care for my housebound dad, who was dying, and raising my 2 kids the best I could. The stigma of being a “single parent”…. the accusations that come along with it… benefit scrounger, fat slag, dirty, husband stealer, utter shite…. I never asked for any of it…. never even flirted with anyones husband…. ok, I don’t do posh, because that is just not me… but I have never felt so low…


Dad died 18/6/2012. Another big hole in my life… the only male influence Simon had.


By this time I was 21 stone in weight… I had given up on myself… my mum saw me through the worst times… and I helped her back.


01/02/2020 I had a heart attack….. laying in hospital worried sick about my kids… I have no will, no life insurance, no savings, no back up plan except my mum…. who is 70 years old next month….


So I pose a question….. WHEN DO WE TALK ABOUT DEATH?
Do we wait until its too late?
Do we have a chat with our loving partner when kids are in bed?
Do you have a partner? Or should it be with your parent? Sibling?
Do you know if they would like to be buried/cremated/donor?
This virus is scary…. but maybe we need to talk?
The majority of fear is the unknown… when… why… where…. who….
If you have a plan in place for your loved ones is there no need to be so scared…?
Do you know what to do when someone dies?
Do you know who to ring?
Do you know everything? …… because even with what I have been through….. I know I DON’T!

Because our charity is very small we don’t have the resources or the expertise to help all of our members as we would like to, all we can do is signpost to services. In these days of coronavirus everyone should be thinking about the what if? question. I couldn’t help this mother other than to offer some platitudes and hopefully point in the right direction.

Ant and Dec relaunched the #BritainGetTalking campaign on their #Saturdaynighttakeway show last weekend. So if you can’t get out and about to see your loved ones, or you are a great listener or talker why not volunteer to help keep your community in touch with each other by signing up to one of the many campaigns being launched across the country to support each other and to support our NHS

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