What ‘Support’ Means to Me…
The lovely Keelie Fiorino is writing a piece about support networks for people with chronic diseases or for those caring for people with chronic diseases. She asked for contributions. This is mine.
A Chord of Three Strands
If one falls down, his friend can help him up. But pity the man who falls and has no one to help him up! ... Though one may be overpowered, two can defend themselves. A cord of three strands is not quickly broken.
The ancient Celts took this teaching from the Bible and ran with it. They decorated important sites with knot work… interwoven strands representing nature, the spirit and various people. The idea is that our lives are like a tapestry and we are all woven together. Modern psychology agrees: dependence is the state of the child, independence the state of the adolescent and interdependence the state of the adult. Maturity comes in depending on others and being depended upon yourself.
A Small Thread I my Knot Work: Mrs Eaves
One day when I was 23 I found myself in a hospital bed. I’ve been in quite a few during my lifetime, but I particularly remember this one. I was lying in it when they told me I had ankylosing spondylitis (which it turns out I don’t have… I have seronegative rheumatoid arthritis). In that moment I saw all the expectations of life you have at 23 washed into the gutter… marriage, children, a career and instead was a future of pain, disability, continuous soul crushing medical treatment… I had had the symptoms of autoimmune arthritis for some 8 or 9 years at that point and the staff seemed to think I should be thrilled or at least relieved to find out what I had. I wasn’t. Once given a name (the wrong name) it became a concrete reality. I already had type 1 diabetes and I had accepted that but the road to acceptance of this new disease would be long and rocky, a disease I had actually already lived with for a decade and which had already done damage which the consultant that day described as ‘severe and mostly irreversible’ It so happened that help was on hand to start it as well as it could have started… this help did not come from any medical personnel (Hell, no! That didn’t come for another 12 years). It came from an elderly lady in the bed beside me, Mrs Eaves. I had never seen her before and I have never seen her since.
She told me something very simple. She said that it might seem like my illness was the whole of my life at points, especially as people my age moved onto things that I would never do, but it wasn’t. I just had to hold onto the things that made me me and there would still be joy in the future. In saying this she shone a little light into the black hole that had appeared in front of me. I wonder if she is still alive… she was an angel.
Can You Expect People to Understand?
The strong and gifted Onika Patterson said to me recently that ‘diabetes makes you feel alone’. Mine does. I think that is the core of having a chronic disease… you can’t say to some-one else ‘Would you mind taking my arthritis for half an hour while I do the shopping?’ And if you could, you wouldn’t. The only way to understand a chronic disease, especially a very painful one, is to experience it and you don’t want that for the people you love. So, getting the balanced right is very difficult. You don’t want to become ‘the girl with arthritis’ but you need people around you to understand the effects of the disease. I don’t mean to be unreliable but sometimes I will have to cancel arrangements and I need you to understand. Sometimes I will send emails you can’t read because my hands have seized. Sometimes I will be irritable and difficult, and you should give me sugar because I’m having a hypoglycaemic episode. Sometimes I will be irritable and difficult and I’m just being me….
Sometimes I’ve felt I was being babysat and mollycoddled, sometimes I felt irked that my friends don’t realise there are things I can’t do. Sometimes I like to be asked about it and sometimes I feel that I shouldn’t have to explain.
Karl Rogers, my personal favourite mental health guru, postulated that there are only 2 negative emotions upon which every other negative emotion is based: alone and helpless. Chronic disease, especially disabling chronic disease, is all about these 2 perceptions. So, in order not to feel alone you must have people who understand and they are usually people who have similar conditions and in order not to feel helpless you must help somebody else (because being helped in the wrong way can actually make you feel more helpless).
There are so many people I could mention here, but for the sake of time I’ll focus on 3 in particular. The first has to be my Dad. He was hit by a drunk driver while crossing the road when I was 7 and sustained an acquired brain injury. He never walked again. He didn’t recognise me for the next 5 years. He was very depressed. Then he got up, started an organisation for people with brain injuries and was awarded the MBE for Services to Disabled People. He stopped looking inwards and looked outwards.
When you have a disabled family member, it’s like watching a sawn glide on water. It looks so graceful and effortless, yet underneath the water its feet are paddling like wildfire! That was our family with Dad. Mum was probably the inspiration and the facilitator behind everything he did, but he was mature enough to be supported. I was not by the time he died. I wish I could tell him I’ve discovered he was right in the advice he used to give me. For some reason the advice of a parent becomes pure gold once they’re gone, but is there for the ignoring while you still have them.
The second person would have to be Mum. She knows me better than any-one in the world but loves me anyway. On days when I literally couldn’t stand up she’s washed and dressed me and never made me feel a burden for it. The number of times she’s driven me to the out-of-hours doctor. The number of times she’s made me dinner… Mum makes everything feel like it’s going to be ok. For so many people, not just for me. The most important thing she does is to remind me that there is more to life than illness at times when I can’t work or socialise or even get out of bed.
Then there’s Peri, who is in constant pain and yet I what my sister describes as ‘an unstoppable force’ (with Mum being the immoveable object!). Peri was not born family but just is and always will be. When dad died she created a place for us to go and a sense of stability. She’s fed us and loved us for years. Sometimes we sit and talk about the pain and the good and bad ways I which we cope with it. Sometimes she pulls me out of the chair and sometimes I pull her out. And sometimes we just have a little drinkie.
Another person to mention here is Keelie, for whose research I am writing this. I volunteered to be a, ‘expert patient’ with the National Rheumatoid Arthritis Society, so I could give advice to younger people with RA. I posted this on facebook and met Keelie. She is finding her path to accepting the disease so well it puts me to shame. Her outward-reaching approach is an inspiration.
Another Hospital Bed….
I found myself in another hospital bed in October this year. Of all the hospital beds I have frequented, this was my favourite. It was in the Royal National Hospital for Rheumatic Diseases in Bath. When I first found myself in it it seemed like a bit of a disaster. Basically, I woke up one morning and my leg was stuck in the shape of a boomerang. This made getting up impossible, and my insulin was downstairs. I phoned Judith, the lovely Biologics nurse, who arranged a bed for me and dispatched an ambulance to get me. I was living in Corsham and studying for a Master of Music degree. I had only been in the area for a couple for weeks and I didn’t really know anybody.
My social life skyrocketed with the hospital admission: I met the marvellous Adele and Sandra who have rheumatological diseases and great senses of humour; I felt really cared about by the staff and the treatment was excellent. I was wheeled in and walked out, and I’ve been walking ever since.
My dear friend Gavin came from London to visit me, and despite not knowing me that well a dew of my classmates came by. The lovely Craig visited twice and texted every day. In a way it was a pivotal point in that established my friendships for the year: I found out who the caring people were.
An aside about Gavin: there’s never been anything in the last 1y years that he hasn’t seen me through.
This is what support means to me: being part of people’s loves and being vulnerable enough to let them be part of mine. It is the chord of three strands; it truly is unbreakable.