32 year old Rhys Bowler has shared his isolation diary with us, to help others grappling with issues raised by COVID-19 and beyond. In the following extracts we share with you some of his brilliant insights, irreverent sense of humour and deeply personal stories.
Hi I’m Rhys! I live with Duchenne Muscular Dystrophy. I am quadriplegic and confined to a wheelchair and am fully dependent on a ventilator. Despite these boundaries I have achieved total independence and live completely on my own with the support of carers. I lead a rich and fulfilling life. I have travelled many times and have had loving relationships. I have experienced all of the normal trials and tribulations of daily life. I have survived and dealt with all the negative aspects, such as loss and depression and have come through it all in the end.
Even in the face of adversity, I know you can live life to its fullest.
At this very difficult and scary time I believe were all in need of some inspiration and positivity to ignite our fires of passion to expel the darkness of COVID-19. I have lived through some quite difficult times and faced and conquered many challenges with my condition. I hope that my isolation diary can provide comfort and reassurance that we are all in the same situation and that we can get through this together.
Times like this really make me reflect on how much I truly appreciate and value my independence, if you want to talk about things that drive us. The things that get us up in the morning and light a fire of passion up our asses, my independence is mine.
I may be generalising here, but to a disabled person independence is everything. That is the need to be self-sufficient like every other Jo blogs out there, to be completely free, free as a bird. It’s worth more than its weight in gold to us, it is more valuable than the very air that I breathe.
To many in my situation I have achieved the impossible, I’ve reached the unreachable dream. And let me tell you ladies and gentlemen this was not easy. I have fought tooth and nail to maintain this, I’ve poured blood sweat and tears into this. It is my life and it means everything to me.
This is a message to COVID-19 or Corona as it likes to be called… you have declared war on that which I hold so dear. I will regain the rewards of my independence that I’ve fought so hard for – but for now I will practice them at home.
On keeping in touch:
The most valuable lesson I’ve learned so far is to always phone your grandmother and your mother – basically all who you hold dear. That generation is so precious to us, we don’t know how long we have them. If nothing else, I know my own are so bloody funny, they’re guaranteed to brighten up a boring day.
The telephone can almost eradicate loneliness – so use it!
Everyone who’s living through this lockdown is going to be dealing with frustration and anger at this moment in time, but particularly those of us who need to be shielded – 12 weeks!! 84 days!! – an enormous task and I’m getting angry with it all already.
How to deal with feelings of anger and how ‘unjust’ this all is: I am going to use myself as the prime example. I have always suffered from rage, and although I have learned to contain it very well, it has always stemmed from a slow build-up of things. Usually it’s days of disappointments, let-downs, a care problem, general frustration and even sexual frustrations, culminating in a massive explosion of anger and overwhelming rage.
Anger can be very destructive to a person who is physically disabled or anyone if I’m honest. It can cause rifts and upset people, it can be directed at anyone and if you are at the receiving end of this it can be very distressing… not to state the obvious but if you are physically disabled you are dependent on other people and you can’t really afford to do alienate them, so I tell myself to ‘suck it up buttercup!’
Now I won’t for one minute suggest that all disabled people suffer with anger issues, but I personally have, and if you have suffered you will now that it can fester and frankly eat you alive. Here are some tips and techniques that I have learned to deal with this:
Acknowledgement and acceptance: Accept you’re angry and try and identify the cause. Don’t be too down on yourself, anger sometimes fuels necessary action and remember – we are all human. I find myself thinking sometimes ‘It’s no wonder you are angry – you can literally can’t move a finger, you’re confined to your house and can’t leave without someone’s help’, and the reality of the situation is human beings can sometimes let you down, often through no fault of their own or human error, but in doing so deny you your freedom.
Trust me though, in this situation we find ourselves in, every little indiscretion is amplified and you’re living in a pressure cooker. To combat this think of the positives, in my case – ‘you can move your thumb, you can move you head to do things, yes with technical aids but it’s still a positive’. And most of all the thing that I cherish the most, my striking good looks (lmao). I’m thankful for my brain and the ability to communicate. Everyone’s situation is different, but we can all try to think of our own positives.and the essence of our being or the thing that makes you you.
Have you ever suffered crippling anxiety? So much so that you can’t move, you’re almost frozen? You feel extremely uncomfortable not knowing what to do with yourself and confused as to which way is up or down. There is an overwhelming feeling of tight pressure around the chest. In that moment you lose all sense of self and all common sense goes out the window and every emotion feel heightened, you feel lost, lost in a forest of thought. I have.
I want to tell you how I deal with this in the hopes that it will be useful to someone out there, especially as we all face the stresses and strains of COVID-19.
Firstly let me say that writing something like this can calm you down instantly. An outlet for your thoughts, like a blog or a journal can help make sense of them.
Try to ignore the negativity and that can’t be bothered, pointless feeling that can consume you. I have to say that sometimes outright self-denial is a good thing, in this instance I urge you to put your fingers in your ears and go ‘lalala’… don’t trust those negative thoughts.
Try to take everyone saying ‘Oh, it will be okay’ or well-meaning platitudes with a pinch of salt, as they can put more pressure on you and make you believe that everyone is or should always be happy. The truth is that this simply isn’t true. No one can be 100% happy 100% of the time. Instead concentrate on the fact that the very fact people are engaging with you, no matter what their words, means they acknowledge you are suffering and they actually care about you enough to check in.
Music can help, in my case heavy metal, as for me there seems to be a contrast in all that aggression. All that screaming and chaos somehow puts me in a calming place, it’s almost like I can’t hear myself and it puts all negative thoughts to one side.
This brings me to my final point – that distraction is key to dealing with anxiety, and goes a long way towards helping and living with mental health in general. That’s what gets me through my day at least.
Death. Now this is an elephant no one wants to talk about. In normal British society we go out of our way to avoid taking about it. But at this moment you can’t avoid it. The current tragic death toll from Coronavirus means it is currently right in our faces. I’ve never had the reprieve not to talk about fatalities myself as it has always been a cold hard reality to me, living with a life-limiting condition. I have had a long time to get used to it, I have had to take the time to design what’s called an ‘end of life care plan’ – giving you the chance to make your wishes clear for when the time comes. Essentially it gives me no choice but to discuss in detail what to do in event of my death. To take control.
There is a lot of negativity around and I know only too well how that can overload the senses, this ordeal is tough even for the most positive of people to shake off. But I for one see this new-found public consciousness of death as a positive. I have always wanted to discuss death publicly, if only to ease people’s mind and reassure them that living with the concept isn’t as terrifying as you might think.
The death of a loved one. I think this one will resonate with everyone.
Have you ever NOT wanted something to happen so badly, so much so even if you don’t believe you start praying on the spot, pleading within yourself you would give up all of your worldly possessions, and the very air that you’re breathing, to stop it happening. Yet it is ripped from your fingers right before your eyes?
To us human beings death is the most difficult thing in existence to deal with, it makes the fragility of live so apparent to you, and shows how precious life truly is.
Don’t get me wrong all deaths hurt us, but some are easier to accept than others. Age is one of the biggest factors in acceptance for some reason – although painful, when an older person passes we seek solace in knowing that person has enjoyed a rich fulfilling life. But when a young person is denied life it can devastate us and we find that concept utterly terrifying.
Everyone has that important person in their life, for whom the thought of them not being here is inconceivable and living without them is an alien concept.
In 2017 l lost my brother at 27 to DMD and it was the single most life-changing event of my entire life, which shaped my destiny for ever. The moment the light left those big blue eye my entire word came crashing down around me in slow motion. My brother was my rock and support network. He was my version of a wife and kids I suppose.
His death made me question my life and purpose, I honestly believe it broke me down and I become another person.
For me it also meant confronting my own mortality, because I had to realise and acknowledge that my condition is fatal, which was not something I ever really thought about until it was forced in front of my face like that.
I’ve realised what a golden opportunity this lockdown is to improve my skills and soldier on, this is the stage I’ve always wanted and it’s fallen in my lap. I’m not sure if I’m going to get a more perfect opportunity than this to reach out to people and share my experiences to help others. I vow to make a success of myself from this diary.