Moving Forward?

I always try to focus on the future not on the past and it’s advice that I always like to give to others. After all we can’t change the past, it’s what we do in the present that can help influence the future. But sometimes the events of the past can be so overwhelming that no matter how hard you try it can be so hard to shake off the feelings and emotions that it brings back.

Two years ago today I woke up in ICU, very confused, full of wires, tubes and attached to different things. The last thing I remembered was going into surgery the day before for what was meant to be a straight forward operation and I was meant to be back home that evening. Things didn’t go quite to plan and I spent 10 hours in surgery. I was transferred to a hospital 50 miles away where I stayed for 6 1/2 weeks. I got infections, sepsis and pneumonia and spent another week in ICU. The physical scars healed well over time but the emotional and psychological scars have been a lot harder to heal and on an anniversary like this they have been re-opened.

I know I’m smiling in these but my mum has always said I’m the type of person who would still smile if his arse was on fire!!

I have been through 6 months of therapy which was incredibly helpful and helped me come to terms with what happened. I was given lots of incredible strategies (including writing this blog) to help me along the way.

Despite this I still find myself thinking “why did this happen”, “how did this happen”? Without going into too much detail, I now know that mistakes were made during surgery but no-one is willing to take responsibility for avoidable errors. That is f***ing annoying, and I’m not someone who gets angry!

In order to stop these feelings and questions becoming over-whelming and taking me to dark places I like to remind myself of the lessons that I learnt from this experience and how I can use the experience to help me moving forward.

I learnt than I am stronger and more resilient than I give myself credit for. I learnt that I am loved. I kind of knew this, but I guess I took it for granted. I truly appreciated every message, card, prayer and blessing that I received. My wife and family went to extraordinary lengths to help with my recovery even though it was overwhelming for them too and I will be forever grateful. I’ve learnt that looking after your mental health can be hard, very hard. Like physical health, keeping our mental health in shape takes commitment, takes time and it takes effort. To be honest it’s something that I’ve neglected for a while now. I’ve not written a blog and I’ve not updated my journal for a while. I guess I thought I had previously done enough to stay in shape. Writing this today I realise I haven’t, my mental health is out of shape, I’ve been lazy. The good thing is I now know what I can do to make it better. I know what exercises will work. So apologies in advance if my blog posts start to increase again!

Another important lesson I’ve learnt is to appreciate what we have around us. We are bomarded with so much negative shit that it’s easy to forget that this planet is beautiful and it’s filled with beautiful people.

Yesterday I decided that I didn’t want to spend the evening sat on the sofa going over the events of 2 years ago so I went for a walk up a hill and it was beautiful! This scenery is only 10 minutes from where I live and 10 minutes in another direction takes me to some stunning coastline.

I don’t know how close I came to not being here, it’s a question I’ve not really asked. I’m guessing I was close enough and I don’t want to come that close again for a long time. Life is for living and I have so much to look forward to!

x

Evelyn

So last Friday I arranged for a film to be shown near to where I live. The film is called Evelyn and it’s special, very special.

It all started about 6 weeks ago. I had been introduced to the film by my friend Catherine. The film is not on general release but screenings can and have been arranged in different venues up and down the country. After seeing the trailer and reading about it, I just knew that I had to get this film shown on Teesside.

Through Twitter I was able to get the contact details for the film production company and got a commitment that we could show the film. Great – we just needed a venue! Catherine saw to that and within 48 hours Team Evelyn was born. We added another 2 members to the team and began promoting the screening and spreading the word.

The film is by director Orlando Von Einsiedel, an award winning director who has produced a number of award winning documentaries which tackle social issues. For this film, he comes in front of the camera, along with his siblings and family to talk about his brother Evelyn.

14 years ago Evelyn took his life after living with mental illness. For over 10 years the family very rarely talked about Evelyn’s death and the impact that it had on each of them. A conversation between Orlando and his sister led to the conclusion that it was something that they needed to do, otherwise they were never going to be able to come to terms with their grief.

They realised that they needed to create the right space and environment to be able to talk about Evelyn so a series of walks were planned in different parts of the country. These were Evelyn’s favourite walks. The 3 siblings are joined on different walks by their parents and Evelyn’s best friends.

I really cannot find the words to do justice to the power and emotion of the film. The impact of some of the scenes are still sinking in 3 days later. It deals with a very difficult subject in such an honest and open way. It’s heart wrenching and emotional but also life-affirming. There are scenes that will make you cry and conversations and scenes that will make you laugh. On top of this the scenery and soundtrack are stunning.

We had about 40 people who attended the screening, the vast majority of whom had their own reasons for attending. We invited Dr Heather Sutherland to speak at the end of the screening. Dr Heather lost a sibling to suicide and she was able to talk about her own experiences and the work she is doing to promote awareness. This led to conversations from audience members about their experiences. It was a special and emotional night.

I was extremely proud to be part of Team Evelyn and to bring this film to Teesside. The area has one of the highest rates of male suicide in the country and far too many of us know someone who has been directly or indirectly affected. I even went onto local radio with Catherine to talk about the screening. This was something I have always tried to get out of but I wanted to talk about Evelyn and I found it a lot less daunting to talk about something I was passionate about and inspired by.

The good news for you guys is that you don’t have to go too far to find a screening. The BBC announced last week that as part of Mental Health Awareness Week, Evelyn will be screened on Sat 18th May, 10.45pm on BBC2.

I can’t recommend this film highly enough. It really is “a film that could save lives”.

Autism and Me

April was Autism awareness month, there was also Autism awareness day and Autism awareness week, all in April. A lot of awareness for Autism basically, but for this I am very grateful.

Autism is a very important part of my life. It has brought me moments of intense frustration and despondency. It has made me question my behaviours and who I am. It has taken me to some dark places. It has also helped me develop resilience which has helped me cope with other challenges that have been sent my way. It has helped me see the world from a different angle and it has given me a tiny window into what it must be like to live with the condition. I’m an Autism dad.

Stephen, my stepson came into my life when he was 3. Looking back there were signs that Stephen might be “on the spectrum”. He struggled with pre-school groups and nursery. He couldn’t follow simple instructions and most worringly, he had no fear! He quickly learnt how to climb onto the garage roof so he could jump onto the trampoline, he had a swing that he came very close to performing 360 degree stunts on, and trying to take him swimming was interesting! If we didn’t stop him he would be trying to jump off the diving board before he could swim 10 metres!

Ok – here’s the thing. I was going to use this blog to continue telling you about Stephen’s childhood but I can’t. I can tell you he’s doing ok. He goes to college part time, he gets about, he has an amazing brain. But the fact is, his childhood and school years were so difficult. I had started to write about them but I got upset and then angry. He’s been let down, very badly. We had to fight to get him the right support at school and then into the right school. Any autism parent will tell you finding the strength and energy to fight when there are days when you just can’t think straight, when putting one foot in front of the other takes so much out of you is hard. But from somewhere, I don’t know where, you find the strength. It’s not about wanting your child to be the same as all the other kids, it’s about wanting them to have the same opportunities, the same experiences and the same acceptance that other children have.

Stephen thinks differently, he behaves differently and he communicates differently, that’s all. It shouldn’t be up to Stephen and others like him to fit into our world we need to find the way to fit into his. There is no cure, no magic pill to stop Autism and I wouldn’t want there to be. There are some crazy theories out there about what “causes” Autism and what you could do or could take to reduce the risk of your child developing it. It’s very nearly always bollocks!! Autism isn’t a disease, it’s not contagious and if your child has Autism please don’t blame yourself, try to ignore the looks from other parents in the playground. You’ve done nothing wrong and nothing to be ashamed of or apologise for.

Wow, writing this has been harder than I imagined but it’s also been rewarding and I’ve been able to come to some conclusions. A bit like being an Autism dad!

If you have any questions or want to know where to go for further help, please contact me and i’ll try and point you in the right direction. x

Evie

About 2 years ago, my stepdaughter Rachel was undergoing a series of tests and scans to find out what was causing the lump on the side of her skull. Thankfully we knew the lump was benign but we still needed to get to the bottom of what was causing the lump before she could start treatment.

We had to got to the RVI hospital at Newcastle to see the specialists there who were based on the children’s cancer ward. I can truly say that spending the best part of a day on the ward was probably the most humbling experience of my life. To see the children and their families and try and imagine what they must be going through. To see the staff who were so professional, friendly, positive. I’m not able to do justice to them and I’m going to stop struggling to find the words to describe my admiration.

We were blessed that day to meet Evie and her parents. Evie was a couple of years older than Rachel and had been diagnosed with brain cancer. After half an hour in Evie’s company I knew she was someone special. She had a wicked sense of humour, an infectious smile and laugh and an attitude that cancer wasn’t going to define who she was and it was never going to get her down. Her parents were also inspirational and didn’t allow anyone to show them any pity but did what they could to help my wife and I.

Evie and Rachel stuck up a great friendship. They compared treatments and medications, talked about which member of staff was the hottest and everything else that girls that age talk about. Whenever Rachel was feeling down Evie would lift her spirits and make her laugh again.

Evie was bravely fighting her own battles. A new type and a more traditional type of chemotherapy had failed to arrest the cancer and there was no treatments left on offer in the UK. It was suggested that a treatment that was available in Germany might work but it would cost £75k. Evie’s mission was born to raise the money.

Unfortunately there is no happy ending to report. Despite fighting so bravely Evie lost her battle last week before she was able to get to Germany. She was 20. Cancer is a bastard.

Despite being a lot older than Evie i can still learn from her approach to life and be inspired. Even if we live to be 100 we’re only on this planet for a relatively short period of time so make the most of it no matter what cards we’re dealt.

Dream big – Evie had a dream to meet Justin Bieber, and she did – twice. She helped people, she raised money, she leaves a legacy and a massive lasting impression on everyone she met and she met some important and famous people.

I hear people say, why do good people die and some arseholes get to live. Don’t waste time thinking about arseholes, fill your life with love, with laughter, with happiness, with singing and dancing. Be wicked, be courageous, be a friend.

Be like Evie x

Evie’s Mission

Power to the People

So on Saturday I got up at 4.30am to get a bus to take me to London for the Put it to the People march. Considering my Saturday’s normally consist of getting some jobs done and then relaxing on the sofa listening to my team get beat this was no small effort. I finally got home just after 10.30pm!

But the UK remaining in the EU is important to me. I hate what’s happened to the country over the last 3 years or so with the levels of hate crime rising and people from other countries treated with more suspicion and made to feel less welcome. We’re not this big country that can get by on it’s own. We’re stronger when we work in partnership with other countries. I want my children to be able to freely travel, work and study in other European countries. I know people who have already lost their jobs as a result of Brexit and I know people who’s vital supplies of medication have already been affected.

Saturday was a reminder of just how brilliant this country can be. I don’t know how many people were there but a million is probably an under estimate. There was people of all ages, all faiths, from all parts of the country. We didn’t come close to seeing any sign of trouble. Strangers came together and sang, dance made new friendships looked out for one another. It made me proud to be British again and that is not a feeling I have had in a very long time.

So what did it achieve? Only time will tell I suppose. Whilst that many people taking to the streets cannot be ignored I’m not naive enough to think that our PM is suddenly going to change her mind or her so called deal!

What I do know is that if things do go badly wrong I want to be able to look my children, friends, family, colleges in the eye and say “i tried to stop it”.

World Down Syndrome Day

Thursday 21st March is World Down Syndrome Day, a chance to raise awareness of what Down Syndrome is, what it means to have Down Syndrome and how people with Down Syndrome play a vital role in our lives and communities.

I feel blessed to have met so many amazing people with Down Syndrome who have brought me joy, made me laugh uncontrollably and just made me forget about any issues or worries I may have been experiencing at the time. It is a pleasure and an honour to spend time in their company, they have so much to offer.

Fellowship

Yet, in some countries people with Down Syndrome are seen as a problem and a burden. In Iceland, a country which for me gets most things right, expectant mothers are told if their baby will be born with Downs. At this point the vast majority of mothers chose to abort their babies which means that Down Syndrome is very close to being ‘eliminated’. The number of similar abortions on the UK is also on the rise

I’m not going to comment on the issue of abortion but I do know that ‘eradicating’ Down Syndrome is wrong and heart breaking. You wonder how balanced the advice from the medical professionals is. I have spoken to the parents of children with Down Syndrome and yes it is incredibly hard work and you’re having to battle a system that is not set up to help you but looks to put barriers in place. But, at the same time these are people with dreams, with potential, with feelings, with talent, with love – so much love.

We have been sent reminders over the last couple of days from New Zealand and today from Holland that the world can be a truly dark place. I want to finish today’s blog with some uplifting video’s to celebrate some amazing people.

Don’t stop me now

1000 miles

A reunion

So on Thursday rock your socks and celebrate this amazing community of people x

https://www.worlddownsyndromeday2.org/event/lots-of-socks-2019

Find your Voice

I’ve got to admit it – I’m worried, and I’m not the type to get easily worried. I’m worried about what will happen to the UK at the end of March if we leave the EU. I’m worried about what kind of country we are becoming and what values we are attaching importance to. I worry about my kids future, what kind of world are we leaving for them and future generations, are they going to be able to get jobs, are they going to be able to get their own property (I bloody hope so)? I worry about the rise in knife crime and so many young lives being lost as a result. Then I worry about me – am I doing the best I can, have I reached my potential, could I be doing more?

It’s so easy for these thought and feelings to become overwhelming. I’ve been in that place where I think the answer is to block everything out, to switch off, to not care. It’s not a good place – and the thing is, I do care, I care deeply. I worry about the state of the country but I also get angry and motivated to do something about it. There are lots of causes that I’m passionate about and want to raise awareness of.

I’ve always found it difficult to give my opinion and to say what I want to say. I’m a classic introvert and that’s fine, I’m comfortable with who I am and I’m not going to change to fit someone else’s perception of how I should be. Social media has given me a voice and the confidence to say what I want to say and to give my opinion. If you follow me on Twitter (@jimbobity hint hint) I will give my opinion on a range of subjects and topics. At first I hated being challenged but now I have the confidence to know that there are other people who will agree with me and back me up. I don’t mind getting into a debate with people who disagree, you quickly find out who you can have a healthy discussion with and who is so entrenched in their views that there is no point wasting your time and energy. The confidence that I have developed through Facebook and Twitter gave me the belief and confidence to start my blog.

I’m not naïve enough to believe that I’m always right, I enjoy being presented with opposing points of view that challenge my point of view and I’m happy to admit when I’m wrong.

I mentioned that social media has given me a voice and the confidence to make it heard but it has also given me the confidence to break out of the social media bubble and to start to campaign for different politicians and causes. I am a trustee for a fantastic local charity JpcCommunityFarm. This came about through getting in touch with the people behind the charity through social media first and sharing my passion, knowledge and experience. I would never have had the confidence to do this face to face or in a group. I would immediately believe that there would be someone who would be better than me.

For the past 4 weeks I have given up a couple of hours on a Saturday morning to speak to people in local towns about Brexit and to try and get support for a second referendum. It’s been interesting and there are some people who are not afraid to voice their opinion but on the whole there has been lots of good discussions and it’s good to be with like minded people. In a couple of weeks I’m planning to go to London to march alongside many other people who believe strongly in remaining in the EU. It’s something that feels scary and exciting at the same time – I’ll let you know how it goes!

Has social media led to you getting more involved with particular causes and groups? Let me know x