Charlie Gard

This my be a controversial post and might cause some people to stop reading my blog. I am not here to deliberately provoke. But I am simply stating my opinion and thoughts.

The disease that Charlie is suffering from is extremely rare. Infact, there are only a handful of known cases around the world. This poses problems for those who are treating him in hospital as trials for medication and treatment will also be in the experimental stage and have no guarantee of success.

The medical staff in the USA that have treated people with this terrible disease have only treated those who were not at the terminal stage as is with Charlie. It is at a point where doctors feel that Charlie should be allow to die with dignity.

When do our emotions stop and clear thinking take precedence? I know when mum was dying it was clear that little could be done for her in the latter stages. I would have done ANYTHING to have her here now. I miss her dearly to this day but one of the things that I as well as other family members had to do was think what was in mums best interests and this is what the courts have explained to Charlie’s parents.

We are only human beings and don’t work miracles. We can only work within the parameters for what we know now as far as medical and scientific research allows us. There isn’t a magic solution for everything.

Raymond Briggs (the author of The Snowman) said that he always tries to write in his books the subject of death. As you know, very sadly the end of the Snowman, he dies. Briggs feels that children shouldn’t be hidden away from death and it should be explained that it’s a very real part of life and I whole-heartedly agree with him.

For someone who has had a very real experience of people dying I have had to look at situations clearly and not let emotions dictate what is in the best interests of the person. Friends, grand-parents, aunts, parents and beloved pets have all died in my lifetime. It is what makes us human to allow us to show utter respect in the last stages of someones life.

How do you move on?

I spoke in the last blog about remembering the time when my father died and how it has affected me now that my mother is no longer with us. There are some people who stick to death and bereavement like chewing gum sticks to the cat. But how do we move on?

Firstly, do you want to move on? There seems a thread now in society that if we aren’t at the grave every week or sometimes even every day that we have forgotten the person or the person somehow doesn’t hold the same meaning to us when they were alive. I have seen and read numerous times how families are clinging on to the memory of their loved one in some vain attempt to keep them alive. Siblings forced to mourn for a brother or sister they haven’t even met.

Because you are moving on with your life that doesn’t mean you forget the person or love them less. Building shrines to someone aren’t helpful. I will talk about the person but there are times now after the stage of mourning where you have to start living your life again. Sitting around thinking about the person you have lost all day isn’t helpful or healthy.

I am not a one to shy away from bereavement and expressing the hurt and pain it causes. At my funeral, I don’t want any of this ‘celebration of life’ crap. I want crying and tears. Then when you have done the dishes and hoovered then you can raise a glass or seven and then start moving on with life. I am dead. Gone. Not coming back. No amount of bright colours or waving off balloons is going to bring me back. I might joke about this but I know that a lot of people want a celebration of life and there is nothing wrong with that either. It’s not me and not who I am.

People who post messages to a person on social media like they are looking in from another spiritual dimension can be helpful for younger people in the beginning but again I have read where people are posting messages about how the person who has died will be drinking alcohol and spending Christmas on a cloud somewhere. A bizarre way to view the afterlife and a little childish in my opinion.

Bereavement can cause a whole raft of behaviours that are strange. It’s when that behaviour is unhealthy or even dangerous that help should be given. It can cause serious mental illness and as someone who has suffered from depression for over twenty years I have had to be aware of my own health and keeping that from slipping downwards.

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The best advice I have heard in the past few months is taking a few small steps into the world again but don’t expect change over night. I am terrified of leaving my home town and going on holiday. I am racked with guilt about ‘enjoying’ life. Somehow it seems wrong to have a life outside of mum. Having been her carer for so many years. But if I was to ask what she might say about my guilt, she probably would laugh, and ask ‘What on earth have you got to feel guilty about?’.

She would then chastise me for being silly and tell me to move on. It would have been her way of dealing with things. Dismissing them and then getting on with life. If life was as easy as that I wouldn’t be writing this blog in my living room but in the south of France somewhere.

So you take small steps until you are ready. I went for bereavement counselling as part of those small steps I am not ashamed to say I got help. There is no shame in asking for help from anyone. It hasn’t been easy but I am glad I did it. It doesn’t make me any weaker or less of a man it means I am being honest about what I am feeling and willing enough to take steps to being well again.

It’s been 22 years

I woke up about 6.30am on a day not too dissimilar to this one. Mum had shouted me down to help with dad again his asthma. It had got worse and she couldn’t get him to relax and calm down.

I came downstairs and dad was leaning over the sink holding himself up trying to breathe. I immediately called an ambulance as six months before we had been in the same situation and it was only the fact that dad had got to the hospital in time that they doctors manage to save his life.

I went upstairs to change and said that I would go to the hospital with him again but mum screamed my name and I came back downstairs quicker than I could. Dad’s head had fallen back on the chair I had sat him on and he wasn’t breathing. There was no pulse and we tried to use CPR.

For a moment I ran outside to see if there was an ambulance and mum continued with dad. I couldn’t believe what was happened it all seemed surreal somehow. Eventually, the paramedics came and they tried to revive him. They had asked us to wait in the living room while they did their best. Eventually, a local doctor arrived and must have worked to try and get some response.

About half an hour went by and the doctor came into the room where mum was sitting and I was standing.

“He’s dead, isn’t he?” My mum asked.

“Yes, I’m afraid he is.” The doctor replied.

I can still recall that day 22 years ago today like it all happened yesterday. Now that mum has gone as well it all seems a bit bizarre. Like it should have happened to someone else. Seeing both your parents when they have passed is strange but I am glad I had time to say goodbye.

I spare a thought who have lost children or siblings. How much harder it must be to lose someone you thought that would be with you all your life. Most people don’t get to choose when they die and some live long and happy lives.

If there is anything I have learned in all of this is that only life is priceless. Making each day count.

Kenneth Williams

I had a look back at my blog and thought I must have written about him hundreds of times only to realise I think I mentioned him once when I had bought an autobiography for 1p on Amazon. That’s it. It is strange what you perceive in your own mind and what is the reality. Things couldn’t be any different once you delve into the past.

I feel an affinity towards Kenneth Williams not only did he appear in the 26 of the most successful British comedy films through his life but he was a consummate raconteur of the talk show circuit in the 1970s and 80s. He was a brilliant panelist on Just a Minute a BBC radio show from 1968 until his death in 1988. The premise of the show is talking and this was his craft and he honed it to perfection.

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Kenneth Williams led a reclusive and sad life. He wouldn’t allow people to visit a sparsely decorated flat that he lived in. He hated any kind of germs or untidiness. He was brought up in a strict Wesleyan Methodist household. It was certainly different from the Methodism we see today. High morals and certainly a disapproving of someone who was seen to be a homosexual. It would have been seen as a sin and a dark cloud that would have irritated and upset Williams’ father, Charlie.

It was only in 1967 that Britain decriminalised homosexual acts and by this time Kenneth was well into his forties. The deep spiritual belief that being gay was a sin was entrenched into Williams’ psyche something that he wouldn’t be able to accept or come to terms with throughout his life.

Even meeting the playwright Joe Orton with his liberal views wasn’t enough to shake off the British facade of wearing the collar and tie even on the beach. You had to look the man to be the man.

My mother was desperate for me to emulate older people within my family unit. “Why can’t you dress like your uncle so and so?” She used to ask me. Growing up with someone who believes that in the 1980s young teenagers should dress like someone in their late 60s caused a great amount of conflict in my house. Especially when it came for me to tell them I had become a Christian and would be regularly attending the local church. My mother was horrified that I was going to church each week dressed in jeans and t-shirt. I had become morally bankrupt in her eyes.

My life seems to have been almost a copy of Williams on paper. His father was Welsh. The religion was Methodist as was my mother’s. We both suffered from depression and conflicts due to being gay. Always the consummate clown from an early age. I was berated by my mother when they received the annual school report to say Philip is messy and a chatterbox. I can remember from the age of six thinking up my first joke. I explained to this to my mother many years later that in conversation with who it may be my brain is thinking of a funny line to say. If I do think it’s funny, I will say it. If it isn’t I won’t. Other times I will say things without thinking and some people do laugh but others seeing as being crude or rude.

Williams quoted someone in one of his television appears about being an atheist. The person in question had asked what if all of life was just a joke and there was no God. The person responded by saying if it is a joke let’s make it a good one.

Moving on

I moved to the house I live in now 14 years ago. I was so excited about getting away from the old house I really didn’t think for a moment that I would spend the next three month after moving day being utterly miserable and regretting my decision.

I know that statistics tell us that moving house is one of the most stressful things to have to to go through and it’s up there with divorce and bereavement. Being naive to this at the time, the move was extremely stressful as the looney that was buying the house that I owed demanded all sorts of work be carried out at my expense before she moved in. She dictated the process all along. She knew I was in love with the house that I wanted to move to and kept making pretty unreasonable demands.

When moving day finally arrived I really questioned whether all the stress, time and money was worth it. I was now in a house that I hated and was desperate to have the life I had back in the in the old place. I had moved on quite literally and I felt it was unnecessary and ultimately the worst decision of my life.

Sometimes you look at the past and you are desperate to go back to what you had. You want that final conversation or just time to say goodbye and know that the person you have lost knows that you loved them. Grief can do strange things to people and I what I have learned so far is not to punish yourself. Taking each day at a time is important and making small steps at a time when you know you cannot run.

Some people try and keep themselves busy almost to shield themselves from the pain but there will be a time when that grief will manifest itself in whatever form it takes. It can creep up on you when you are least expecting it. If you are one of those people who say ‘I am not going to cry or let it affect me’ you might be doing more harm to yourself in the long term.

I know people who we all have lost wouldn’t want to see us upset with pain but sometimes we need to let go of what the person we think would want and allow ourselves to mourn. In allowing ourselves moments we are releasing the pain. It’s not that we are releasing them or loving them any less we are allowing ourselves to heal. It’s not moving from the love but moving on with our lives.

Frost

It’s been a cold week. I haven’t been going out much as I have been recovering from a winter bug which saw me laid up in bed for the best part of two days doesn’t really help when you aren’t feeling the best in the first place. It was bad because I was waking up thinking I was back living at my parents and they, when you realise where you are at it, makes you feel like crap.

I don’t know what it is when I’ve got older I have become less tolerant of the cold. I was talking to a friend about this and they said it doesn’t bother them. Just put more layers on. I think it’s more to do with hardwiring in my head that has a lot to do with it. Trying to protect me and feeling safe. If I feeling I am a little out of my depth or insecure going to somewhere and it makes me uncomfortable for whatever reason it will cause distress. It is a self-preservation mechanism that kicks in.

The spring and the summer are great. Nothing better than flinging the windows and doors open allowing the warm air to go through the house. Sitting in the garden and admiring the view (when it looks nice and not like a council landfill site as it does at the moment).

Grieving

I have never been able to be sad for the things I haven’t had. It’s like sad that you haven’t had a sister. Well I have never had a sister and don’t know what it’s like so to me that is said. It what you have known and lost that makes sad

I didn’t even meet or know dad’s side of the family. He never told us that the had relations living in the south. I didn’t know them so not know what you haven’t had doesn’t make you upset.

Today, well to be exact this evening has been this worst. I am dreaming that she is still with me and that I am saying to her in the dream that it is impossible as you are not around. It the subconscious mind trying to patch things together in your memory and make some sort of resemblance of order in your life.

And then somehow dad appears and he has been dead over 21 year and things get very confusing and muddle because I know in the dreams that they had passed away and I am stilling coming to turns with.

Today I found a diary of mine of late 2012 which I asked: “What will it be like when she is no longer around”. It was interesting theories and emotions about mum and certain people were so true. Yes, it is scathing in some parts but I said that I have spent quality time with mum which is the main thing that mattered. Even in 2012, I knew I had done the right thing.

As I had said before losing my father happened so quickly before I started my teacher training so I really didn’t have the time to grieve which screwed me up a few years later.

The mental torture of losing a loved one cannot be cured. Emotions can be suppressed with booze and medication but there is a lot of screwed up people out there who haven’t properly grieved for a loved one. A numbed pain only goes away for a few hours while you are stoned or pissed. This is the equivalent of trying to put on a plaster on a major wound after surgery you might think it will go away and ignoring it does make things difficult in the long run.

Grieving is a natural process. At the moment I cannot be bothered with small things in life. This is a process that mentally you have to go through. Great speech Philip, but doesn’t make anything better,  different and easier to handle. It only gets easier to handle things less painful each year. Especially around mothers days and other occasions things that connect with mum and myself like Christmas’.

I have good friends and loads of people who I can fall back on and that makes a difference. I have been for them when they have needed help and when I am feeling like crap they help as well. I just take each day as it comes and not try to suppress the tears and emotion.

First Christmas

I know a lot of the people who are my friends aren’t big fans of the Royal family (more Royle family). I always listen to the Queen’s Christmas Day broadcast. It was the Queen that did mention that it can be a difficult time for those people who’s first Christmas it is spending it without a loved one.

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When you have spent every christmas, bar one, with your own mum it does become a little strange for her not to be here. She would have been falling asleep after dinner when I was tidying up. Except it was me that was falling asleep about 5pm after I had eaten and my food had settled. I think the mulled wine played it’s part wonderfully.

I spoken to a few people who have gone through the same. You expect them to walk through the door or someone to give you a phone call. Mum a few times used to set a place for dad at tea time ready for him coming in from work.

I think the worst bit has been waiting for my phone to ring to say I needed to go up early morning as they were having getting difficulty getting mum out of bed or the district nurse would call to say that the needed me to pick up something from the local pharmacy for mum.

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The phone has stopped ringing and sometimes it was ring three or four times a day, some days even more. I didn’t mind it because that was I was there to do it. I was her carer and her son. But you don’t know really how you miss something now that it is now long there. You cannot miss something you have never had or experienced.

So I have the first christmas over. It was the same when dad died. After a few years you get into a difference routine and and different place. Your plans change. So what ever happens next year I will see. If I spend it on my own again that will be up to me. Or if I get invites like I did this year I might take one of the them up. Who knows? But I won’t forget those who have passed. You never really lose them entirely as you always have the memories you made with them.

Loss

Friends who have known me a long time would know what it was like when my father passed away in 1994. It doesn’t seem like it was twenty years ago this year. A mixture of disbelief and confusion was emotions that I can remember feeling at the time.

His death was a shock. He wasn’t suffering from an illness that was terminal. He had been to work the day before and nothing seemed to be untoward. His asthma though had been troubling him for years and really taken hold on the year that he passed.

He died of an asthma attack in the kitchen of the family home. It was early morning and he had been struggling to breathe. I called an ambulance as six month previously he had suffered an attack that had left him in intensive care for some time and then his continued recuperation in hospital.

This time no such period happened. He died within a matter of minutes in front of mum and myself. A stark and appalling thing to witness. Paramedics had laid him out on the bed ready for collection by the undertaker.

He would have been 77 today had he survived. Time is a healer of grief. It took years for me to talk about it without bursting into tears. But here I am twenty years later and I often ask myself what he would have thought about the world and things going on around him. He would have been miserable and cantankerous that I am sure. He wouldn’t have wanted anyone to make a fuss over him and would have hated any ceremony that had been dedicated solely for him.

A gentle remembrance now and again. A nod to his existence in the world is what I give him.