Muddy Jukebox - June 2020
Hotel Walls
By C1 (CEO Muddy Care CIC)
So, I’ve been trying to decide how to write this for several weeks now, since COVID arrived, as I know some people will be beginning the horrendous journey I started in 2011. I debated about whether I should write this because it will be raw and will sting those in the position I found myself in totally unexpectantly eight and a half years ago. I thought though about how it was for me in the early days and how I wish I had been able to find a story about someone going through what I was going through at the time (and would have to go through for many more years). And if this helps just one person then it is worth writing this. So I went through my tunes and this song I felt was perfect for what I wanted to say. So here we go…
…This song is for all those people who have been totally caught out by a virus damaging an organ(s) / their immune system and turning their lives completely and utterly upside down in multiple facets. This includes the COVID virus but it also includes all the viruses that the medics will never be able to identify despite the numerous blood samples they will take from you and send to the labs. And yes, I fall into this category. It is a standard joke with me and my medics that my virus is unidentifiable. And that makes my treatment plan just so much more difficult because the medics do not know what they are treating. It’s unpredictably in the way it savagely damages my body surprises the medics too. I seem to do everything by the path least walked, including being ill. I have been told by several health and medical people I am both the unluckiest and luckiest person…unluckiest in the damage that has been done to my poor body (I was the text book worst case scenario in the early days) and luckiest in reference to my resilience. But here, let me tell you something. I have worked tirelessly and consistently, persisting with my research into holistic health and wellness and chronic illness, trying to find a way out of this nightmare that has completely consumed my life for so many years, that has taken so many things from me, things that cannot be repaired or replaced. I have lost several years of my life from being so ill. I have been unable to do most things that someone my age takes for granted for several years. I have only existed in some years since 2011. So lucky I am not so sure. It’s like I had to go away for several years and yet I never physically left. My soul though went away and where I went, only those with a chronic condition(s) will understand…but I have returned, a new me who lives each day as brightly and as best as I can.
When your body is ravaged by a virus, some damage will be permanent. There is no pill you can take to change this. It will take you years to recover to a level of living semi normally, not months and the struggles you will have to face will take you to extremes you never knew existed. These struggles will absolutely break you into pieces, on several occasions. I can remember howling (and I mean actually howling) crying, once, on my knees, by myself with my dog by my side, on one of the many occasions I was completely broken into pieces by my illness. I never even knew I could howl and I have not cried like that since. It was one of my lowest, loneliest and most challenging days of my life. My body was absolutely broken and so was I. As Denzel Washington says though, “Fall down seven times, but get up eight.” Only the few closest to you will understand in part how horrific this journey is for you but only those who have been there themselves will really know and understand how bloody horrendous it is / will be for you.
The reality is if your organs have been significantly damaged by a virus this is going to be a long, long, long battle. You will probably evolve into a very different you over those years too. But don’t give up. Be consistent. Be persistent. Be brave. Be bold. Be intentional in everything that you do. Be loving. Be kind. Be hopeful. Have faith and dream of a brighter future.
I was 37 when I first had to face the prospect of dying. In 2012 I was told I was in the early stages of heart failure. I used to be a GB athlete (for four years too) so try and work out how you cope with that reality easily...you don’t. As the verse so poetically says below, never, ever at 37 had it crossed my mind that what happened to me could happen to me. In three hours, my life changed immeasurably and irreversibly. It probably took three years to accept this and then wham, the curve ball hit me again.
I’ve made several deals with God, with the universe over the years and I even started to pray again when I got ill and one of my closest friends says many a prayer for me. I believe they all help.
“I signed the papers for a lifelong lease I rent the earth where I stay and the air I breathe Then you forget that deal you made with God While busy finding yourself being young, being dumb, and in love It's all too easy and you're easily bored Never once has it crossed your mind that life's too short And there's a third person walking behind us A tap on the back and it's there to remind us Life is a blink of an eye 'til you are no more.”
During my chronic condition journey, I have had to consider the possibility of dying several times. I have laid in my bed at times when I have been really sick wondering what it will be like to lay in my coffin. I do ask, ‘why me?’ sometimes but far less frequently now. Illness does not differentiate nor discriminate. Sometimes it is totally random. Illnesses and viruses are brutal and savage and they can almost destroy lives and in some cases they do. That’s a fact.
My challenges are still immense at times and my future has UNCERTAINTY in big bold letters. But through sheer persistence, knowledge and implementation of so many things I am doing to try and help my body in all facets of health and wellness, I think I am finally finding a way to live a very good and rich life again and with my chronic conditions. They do not define me but they are part of me. It took about seven years though to get to this point and every month now there is a small improvement. And that’s the overwhelming message here. Believe in HOPE. DO NOT GIVE UP!!!! Being seriously ill can feel like an un-winnable battle for a long, long time but the tide can turn…eventually.
Sometimes I am very jealous of those healthy people who have simple and privileged lives. The irony is most healthy people do not realise how simple and privileged their lives really are by just being healthy. But here’s the thing about my life now. It is really good. I still have significant physical challenges some days and emotionally my chronic illnesses still really test me but far less frequently now. I also have so many tools and strategies to use now which makes so much difference in enabling me to live a good life more easily and cope with my challenges so much better than I could in the beginning of my illness journey. I also work with my body these days so much better than I used to. We’ve got a solid partnership now. We are a team. We (my mind and my body) used to be at war.
I am a scientist but I am also incredibly open minded, much more so from becoming ill. Things have happened to me through my illness journey that could be called coincidences, could be called serendipity but some things that have happened to me are neither of them. And these things have helped me accept that there is something far greater than what we can just see. It’s about what we can feel too. My relationship with life and death has changed in many ways since becoming ill as you too will find as your journey with illness evolves. And my relationship with me has changed.
“But all beautiful things come with edges and thorns And the body you borrowed is starting to look kinda worn”.
Muddy Care would have never developed had I not been on this horrendous journey. As my body became more broken, Muddy Care grew and evolved with greater ferocity and beauty to give. So as this song says, all beautiful things (Muddy Care) comes with edges and thorns (my illness). My body is broken in several ways but I continue to glue it back together. And yes it works differently but we are living well and Muddy Care is thriving.
I started to write Muddy Care in 2015 and it has been an impetus to live since then but when we secured the grant funding for Muddy Care Phase A in early 2019, something both strange and transformational started to happen to me. I think it is called healing. The process began at the end of 2017 but it took just over a year for me to realise things were definitely changing for the better. To believe I was finally starting to heal was met with trepidation and scepticism because I have had so many serious relapses. And here is another reality check…when you have been so ill for so long healing doesn’t happen quickly either. This is a massive road trip you will go on.
My illness journey sent me away for several years. My journey broke me completely and utterly and as I started to heal it has allowed me to return to me. I am back now and I love life with an energy and a vigour I never had as a healthy person and I loved life then too. So please believe that brighter days are possible if your journey is sending you away. You will return. You just might be away for a while or a long time like I was.
Gradually I am starting to see this healing process begin in some of the Muddy care participants too. I think it starts to happen when we not only accept the new us but we begin to understand our journey better amongst all the trauma and loss. The complete metamorphosis begins to have meaning.
As I continue to heal and those on Muddy Care begin their own healing journeys, the ripple effect begins…as more people start to heal, they in turn help others to begin this journey. And this is how the Muddy Care community is steadily growing. The Muddy participants are now reaching out as a community to others with a chronic condition(s).
As this song says, life is beautifully ugly at times. You check in, you check out. Everything on earth is rented, but while we’re here we should celebrate life rather than fearing the inevitable death. Many may find these song lyrics quite maudlin. I personally find them refreshingly honest. The melody is upbeat though that reinforces the meaning of this song which is about how opposites can reinforce and actually accentuate feelings and heighten our moral compass. The uglier life becomes, the greater the beauty of life and nature are enhanced. Life is beautiful but we probably don’t realise how beautiful it is until we are left struggling. Being chronically ill you are reminded daily of your struggles but you are also reminded daily about how beautiful life really is, particularly the smaller stuff. Don’t live life recklessly. Life is not meaningless. It is anything but meaningless. And you will probably only realise how important it is to live well and honestly when your own mortality taps you on the shoulder. Live life purposely and well. And the most important things in life; people, pets (particularly spaniel extraordinaires called Finn and Pebble), laughter, kindness, love, care, thoughtfulness, 20 second hugs, kisses, cuddles, the night sky, stars, planets, meteorites, comets, watching the space station and rockets, sunrises, sunsets, the beach, the ocean, the mountains in the sun, the mountains covered in snow, adventures, holding hands, laying in the sun, running in the rain, storms, sitting in the hills watching the sky, a running river, riding a wave, cycling fast down a hill, bird song, a busy bee, butterflies, flowers, cake, music, dancing, heartfelt smiles and a face that expresses without words that they genuinely care for you and will protect you, always, are what we should strive for.
I understand my journey much better now. I have such good, sound people in my life. I have found my purpose and through Muddy Care we are serving others and helping them to find their bright futures again. My life has true meaning. Muddy Care is building, blossoming, growing and helping more and more people to celebrate life again. Here’s a change too. I am even open to finding love again…I haven’t been able to think about this since 2014 because of my illness. That’s a long time to be so ill that you can’t even contemplate having a relationship.
COVID and other viruses have destroyed many lives and will have caused/will cause years of heartache and trauma for many. That’s the reality of viruses when they are serious. However, what I am saying is amongst all this ugliness is a beauty so deep and pure that it will allow you to fight another day and another day after that. And that is how you return to you. Ugliness can actually make your life more beautiful and precious but you will have to go through a hell of a storm(s) to get there. You really will realise not to sweat the small stuff. Keep fighting. DON’T GIVE UP. Life does get beautiful again, I promise. It just takes time.
Hotel Walls
I signed the papers for a lifelong lease
I rent the earth where I stay and the air I breathe
Then you forget that deal you made with God
While busy finding yourself being young, being dumb, and in love
It's all too easy and you're easily bored
Never once has it crossed your mind that life's too short
And there's a third person walking behind us
A tap on the back and it's there to remind us
Life is a blink of an eye 'til you are no more
So I stand back and I watch us fall
As we break everything inside these hotel walls
Life's for rent and it called us out
So I hand back the key as the door man bows
They greet you welcome with roses and champagne
When you walk through the lobby they all know your name
But all beautiful things come with edges and thorns
And the body you borrowed is starting to look kinda worn
So I stand back and I watch us fall
As we break everything inside these hotel walls
Life's for rent and it called us out
So I hand back the key as the door man bows
We're just grains in the universe
I let that comfort me when I'm anxious
This life is beautifully ugly at timesWe're just grains in the universe
I let that comfort me when I'm anxious
This life is beautifully ugly at times
It's beautifully ugly at times
It's beautifully ugly at times
It's beautifully ugly at times
It's beautifully ugly at times
So I stand back and I watch us fall
As we break everything inside these hotel walls
You know that life's for rent and it called us out
So I hand back the key as the door man bows
