And so it ends.
I’ve always been open about my disability and life and feel that the last chapter requires that same openness.
After 6 1/2 years I’ve let my body decide whether it can sustain life, I’ve switched the vent off and as my breathing slows will be sedated and won’t have any medical treatment to help stay alive. According to my doctors my lungs will slowly stop moving and sats will drop. Given my stubborn body there is the possibility it’ll keep breathing, it hasn’t done anything that I have wanted since the accident.
The decision to switch off the vent wasn’t that difficult to make, the surprising part is I got this far but that is down to the support I’ve had from so many people and me not wanting to let them down. The list is too long to thank everyone individually although I will thank a few further down this post but I hope that everyone who has helped realises that their support was appreciated. It got me through some difficult times, gave me opportunities to try and find some form of satisfaction inside a broken body and made me understand the value of friends. In many ways I’ve been lucky to travel this journey, I’ve learnt about myself and the kindness of others, can’t say it is the way I would of chosen but I will leave this world a lot wiser because of it.
You’ll probably be asking why? That is a hard one to answer as it isn’t one thing. Living with no movement is hard, living with no physical sensation a lot, lot harder. I miss the feeling of touch more than anything and find knowing that I will never have it again very difficult. As I get older I look to the future and question what it will be like living in old age like this, it holds little appeal. I’m tired of being dependant on others, hate what I go through every day, spend most of the day with eyes shut trying to pretend that I am somewhere else. The total loss of independence isn’t me. The side effects of constantly being cold, never ending hypersensitivity on my chest, spasms that twist and distort me all limiting what I can do. Constant pressure sores, months spent in bed unable to do anything with Linzi. Watching a relationship fall apart stuck in bed. Throw in the pissing and shitting problems along with lungs needing a plastic pipe shoved into them to remove the build up of secretions and I do find it difficult to find quality in life. And that is ultimately what life is about, being able to do things, keep a relationship together doing things together, being able to socialise not leave at 9pm so your care team can get you to bed. No spontaneity, everything planned with military precision, it just isn’t me.
For the last 6 1/2 years I’ve lied and deceived, as much to myself as all of you, pretending that I could find pleasure in a difficult existence. There are times that I did but they are rare and not worth the price paid. I’ve tried to do things, managed to prove that a severely disabled person can work in the bike industry and I am proud of that but also know that I can’t do it like I once did which is a source of immense frustration. I’m grateful for the work opportunity with Ison, without it I’m not sure how I would of coped, it provided a release from the sleepless nights spent in the darkest parts of my mind. That mental game is the most difficult I’ve played and eventually wore me down but at the same time I’ve found comfort in knowing that I tried and that I am making the right decision based upon life experience and not a fear of life with an SCI.
Yet again we are short of support workers, Linzi is having to cover too many hours and I live with the constant fear of my care package falling apart and being forced to exist in a care home or hospital. I can’t describe what that is like but anyone who visited me in the hell hole Hawthorns will understand. The relationship with the care companies has always been challenging, you can’t complain for fear they withdraw support and are only required to give one months notice when it takes 3 months to get a new care company in place. We struggle to recruit and that isn’t going to get any easier. The stress that a lack of support brings is one of the factors in my decision. It’s put a huge strain on my relationship with Linzi as she has to get involved and look after me when we are short of support workers. It can’t continue like this and I can’t expect Linzi to endure it indefinitely.
I’m lucky to have enjoyed life to the full up until my accident, the bucket list was very short and this made the decision easier. I’m old enough to not think I’ll be missing anything, if I was younger or had kids and responsibilities it might be different. I’m aware that isn’t the case for many of my friends in similar positions and hope that they can find happiness where I can’t.
So why now? My first words when brought out of sedation were “turn the life support off”, with no advance directive they wouldn’t do that, I tried again after 3 months but was deemed not to have mental capacity. After that I thought that the only option was assisted suicide in Switzerland but couldn’t put Linzi through that. A bit of research last year and I found that I could refuse medical treatment which included switching off the vent and after a lot of talking to doctors I was determined to have capacity. There is a line between assisted suicide and refusing medical treatment which keeps you alive and a lot of legal checking carried out prior to it being OK’ed. Didn’t know when I would do it but decided probably one more summer would be enough. Over the past few months my health has deteriorated, increased spasms, pressure sores (multiple), more medication, greater fluctuation in body temperature and more making life even more painful and uncomfortable. As summer rolls into autumn and now almost winter it is time to end the suffering, I don’t want to endure another cold winter for little pleasure. One of the hardest things was not telling close friend’s, I made the decision in July and have had opportunities, apologies to anyone that I met and couldn’t say anything, I didn’t like being deceitful.
I have to thank the Palliative care team and district nurse team that have supported me through this process, every step checked out and kept informed and always making me aware that I could change my mind even after I switch the vent off. Legally I am refusing a medical treatment and the care that I receive subsequently is sedation for the discomfort and pain. The trust’s legal team and coroner have been consulted and we have followed their guidelines. I don’t think anything more could of been done to keep me informed and capable of making my own decisions. Support from the teams that tried to alleviate the health problems right up until the last minute, caring for me just in case I would change my mind, everything possible done to try and get me in a better place but ultimately respecting my wishes and preparing to make sure that I am comfortable in my last hours.
I don’t think anyone can ever understand the reality of my life and I am lucky, lucky to have friends, lucky to have employment, lucky to have had the financial support of the Ride for Michael trust, lucky to have a wife who has endured so much. Sadly it isn’t enough, I’ve lost too much and know that I can’t have it back. The only certainty in life is death and I now accept that going early is the best option, enduring years more of this holds no appeal and I am fortunate to have a way out, paralysed lungs does have a benefit.
The realisation of the impact on my body became clear when I asked about donating my organs and nothing is usable, 6 1/2 years and that is how much I’ve deteriorated, little wonder that the side effects are getting worse. It is not going to improve, something that I have known for a while.
I’m aware of the stereo typical disability means life isn’t worth living and sadly that is where I am, others can and will cope better than me, I’m just not strong enough to keep going so please don’t pity anyone with a disability, they have an inner strength and are getting on with life in difficult situations. They need the world to change and your support to do that not your pity. I’ll be honest and say that for me it is a miserable existence, in no way comparable to my previous life but I had such a good life it was never going to be. Looking back I had a fantastic time, dream job, travel, amazing partner, all the toys that I wanted and a diverse group of friends, few are so lucky in life.
And finally a few thank you’s, apologies to anyone that I miss out, Lester, Lloyd, John C, Antony, Piers, Geoff McComb, John, Mike and everyone involved with Ride for Michael. Pat and the team at Ison, all of my support workers and the medical teams that have supported me especially in this final journey where the same care that kept me alive goes into looking after me as that life ends. Friends in Penrith who have helped out, friends who fund raised to help me buy equipment, Jack at Remap who modified that equipment, Stuart at Cyclone, my mum, sister and family who knew that I had made the decision and understood why and didn’t apply any pressure to me to change it and finally Linzi I couldn’t have made it this far without you, I didn’t just destroy my life I took yours as well and it is time to give it back.
I’ve decided to be buried rather than cremated and hope that anyone who attends my funeral celebrates my life, come in the clothes I would usually see you. No mourning, I’m making a decision that is the best for me and Linzi and have no regrets.
No flowers please, donations to Hospice at Home charity and Eden Animal Rescue. The balance of the Trust fund is being donated to Remap charity.
Despite everything I still love cycling and hope that the Ride 4 Michael aim of keeping people riding bikes continues in spirit. It doesn’t need me to do that it just needs you to keep riding.
And so ends my Facebook posting, thanks for reading if you got this far, thanks for your friendship.