Muddy Jukebox - April 2021
Carry You
Ruelle
This juke box is dedicated to all those who have been shielding, who are medically vulnerable, who have chronic health conditions, who are ill, who have had to struggle with so much more than just COVID lockdowns over the past year.
I have visited the beach in this video to this song many times. What a lot of people don’t realise is how both beautiful and dangerous this beach is. Not only does it have some amazing columnar jointed volcanic rocks, it is a place of myths, legends and superstition. Its black sands set against the backdrop of snow-coloured mountains leave you breathless sometimes as the light constantly changes. However, it is its waves that are a force you do not want to experience. Part of the reason for this is that if you were to draw a line directly south from this beach, the next land mass you would reach would be Antarctica.
This vast area of open ocean creates a phenomenon called ‘fetch’ and the fetch at this beach is one of the strongest you will find in the world. Fetch is the length of water wind has blown over without obstruction (such as land) and as it blows it generates waves. As the distance of open water increases so does the height and strength of the wind waves i.e. Fetch, up to a maximum of about 1000 miles.
The strong fetch here helps create frequent rogue waves that have caused, unfortunately, some people to be very sadly washed out to sea. Once the waves get you here, only the experts who understand how the movement of waves work and have the strength, knowledge and skills to navigate such a force will be able to get themselves successfully back to shore. This beach is a metaphor for this song and it’s words reinforce the message I want to convey through this jukebox.
This song is about the power of inner strength, of love, of kindness, of care, of people helping one another find the light again when a rogue wave (metaphorically speaking) washes you out to sea. It’s very hard when that rogue wave washes you out to sea to get back to shore without the help of others.
I have just finished shielding and have been shielding for over a year now. As my luck would run last year, several days before my first shielding event was to end in August 2020, my bags were packed to escape to a cabin in the highlands of Scotland. And bang. That rogue wave got me…I had a very serious nephrotic relapse that meant for me I had to start steroid treatment again and I never got to my highland cabin. ☹ My body came under attack again by my own body and I became incredibly ill.
I am also on transplant medication. So for me when I relapsed in August my shielding never ended, it just continued as I was so significantly immunosuppressed. I was left fighting and struggling to get back to shore for weeks on end. In a year I have only left home for my many hospital and GP appointments (thank you as always to my amazing medical team), three Muddy outdoor workshops, four outside work meetings and a couple of trips to the shops or pharmacy. I have not been able to do much exercise since August either as I haven’t been well enough. It has been predominantly my parents, me, myself and I…or has it?
For the last year I have been able to have physical contact with only a few selective people because of my medical vulnerability. I’ve only had two hugs in over a year. I have had several lockdowns before COVID and shielding for me has been another readjustment to a life that has continually had to be readjusted for over nine years now.
The last 12 months have been tumultuous and although everyone has their own story in relation to this period of time, for those of us who have had to shield, manage their health challenges and some also their businesses, it has not been at all easy. It has been UNCERTAINTY in bold capital letters.
For me and many others who have been shielding, who have chronic conditions or who medically vulnerable, there has been a constant flow of challenges and those challenges continue as shielding ends. I end my year of shielding a very different person physically than who I was when I started shielding in March 2020. I have an additional 23 lbs of weight as a result of medication and I am still navigating my steroid taper. After the taper ends I know I will then have to start to follow my ‘lose the steroid weight plan’ again which means months of patience with my body whilst it recovers and rebuilds itself again. Losing steroid weight is not like losing non-steroid weight. It works very differently. I feel like Princess Fiona in Shrek…there are two of us. The steroid me and the me that appears when things are stable for long enough for me to not be on steroids anymore and for enough time to pass to allow me to lose the steroid weight. Having a serious illness pushes you to extremes in several directions. It’s never simple nor an easy journey. And there is now the added reality of living in a COVID world when you are immunosuppressed. So for those of us who have been shielding, for many of us it has not just been about isolating ourselves from the virus. It has been more about managing additional challenges whilst isolating ourselves from the virus.
I am very lucky in reference to the people I have in my life. I have three families, not just one. And that is why it hasn’t just been my parents, me, myself and I over this past year. My three families include my family, my close friends and my Muddy Care family.
As much as I founded Muddy Care to help people who have chronic conditions find brighter days, to manage their chronic conditions more effectively and independently, my Muddies have really helped me since August 2020 as have my other families. They have all helped to carry me through two nephrotic relapses since August 2020, shielding, steroid treatment, the menopause, gallstones, an accident where I fractured my wrist and a couple of ribs at Christmas and they have helped to give me both the will power and strength to navigate Muddy Care through some extremely turbulent financial COVID waters. My families have helped me find my way back to shore.
On our Sundays when my Muddies have had their educational workshops, mostly via Zoom, they have always asked how I am, they have praised me for my endurance, and have picked me up when they can see I am struggling a little. They know exactly how ill I have been feeling sometimes and how emotionally challenging my medical journey has been. They have helped and are helping me through these challenges. Being on steroids and coming off steroids after several months is not easy and kidney disease is no joke. Throw into the mix a damaged heart, blepharitis, an autoimmune disease, shielding, COVID, trying to navigate the financial challenges caused by COVID on Muddy Care, the pain of gallstones, broken ribs, and a fractured wrist, personally, it really has been a rough sea to navigate through. At times I have had days when I have struggled to shine …but then a member of one of my three families has said or has done something for me that gives me the strength to keep on fighting and to help me get back to shore. It’s never the big gestures that matter. It’s always the small but deliberate gestures of love, kindness, and care that matter. It’s about being there when it matters.
We all need sometimes someone from our different families to remind us we are not alone. We all need people to carry us sometimes just until we are strong enough to carry on by ourselves again. And as Muddy Care expands and grows, I know we can successfully support many others who have chronic conditions, serious illnesses, Long Covid and disabilities. Because together it is easier and we are stronger swimming back to shore with help. And that is why I always wanted Muddy Care to be driven by the very people it has been set up to help because we truly understand how powerful the rogue waves can be. It is that innate empathy (because we have all been washed out to sea) that stops us from drowning because we truly understand the emotional battle you are fighting.
This song is for all my families, to say thank you so much for helping me over the last nine months and towards brighter days. It is also for all of those who have been shielding and struggling with your own health challenges. I really hope that as things start to return to a different new normal, we don’t forget the importance of looking after one another. Even the strongest fall down sometimes. It’s the people who are there for us when we get carried out to sea that help us get back to shore and learn to shine again that matter. It’s not about what we have. It’s about who is there next to us helping us back to shore. If you can see someone struggling in the waves, help them back to shore please. Don’t leave them to struggle alone.
For those of us who are shielding, who are medically vulnerable, our shielding may have officially ended for now but that doesn’t mean our lives just return to normal. Far from it. We are part of that sector of people who are going to have the most significant adaptations over the next year and beyond because of COVID. So this jukebox is also a reminder to those who aren’t shielding, who aren’t medically vulnerable, to continue to be considerate of others through your own actions, for people like us. For very easily and very suddenly, without any warning, you too could find yourself in a situation where circumstances beyond your control, turn your world upside down and inside out in every direction possible and where you too find yourself medically vulnerable.
To my families, diolch yn fawr iawn. Sending you all big cwtches. And to ‘the muddies.’ We will be back outside very soon again in our lovely Welsh natural spaces laughing, supporting one another, healing together and finding brighter days together. And when I win the jackpot, I will take you to this beach. xxx