At the moment, coconut cream crusted frozen berries with lime or lemon juice is what I am mostly eating, well, at least once a day. It really keeps me going, and for me it has just about replaced smoothies, for now anyway, I’m sure they’ll be back (when I get the food processor/ blender I’m saving for it’ll be pureed everything!). A bowl of zingy frozen berries and coconut milk or cream always gives me an instant energy uplift and boost, which of late I have needed so much.
As it is disability awareness week (so says twitter, which is a great initiative, and also every day should be disability awareness day!) I am going to discuss coping with disability. Life is always a challenge (for everyone I expect), and for me being out of my everyday environment is especially challenging, in every way. Recently Dan and I got married and it was a huge upheaval, a good one in that the day was so precious and I am so so happy to be married; I didn’t think it could feel any different, we’ve been together for so long and been through a lot, but it is like a lovely extra layer between us and the world somehow. It’s special.
But the wedding was also very stressful and a total upheaval, especially because I had a virus, I was ill for weeks before and after with a nasty bug and it completely disrupted my life. I was unable to take control of the day I had worked so hard to make happen, which was very important to me. My diabetes has been a nightmare to control and this in turn affects my health in every way, for ages… I coped. I cope. But it takes a lot of momentum to maintain the things I do and to keep going, and right now I feel I have to pick myself up and start another stage in my life and I feel a bit lost in the fug. I need my health diary now more than ever, and even more I need good wholesome food to keep me as healthy and pain-free as possible, and give me the joy and energy I need to keep going. Bring on the coconut and lime crusted frozen berries… (is that a mouthful? A super tasty one though!)
When you are disabled (I don’t truly see myself as that if I’m honest, I am just me and I reject any such label, especially such a horribly loaded one. But it is what is available and I think it is important to speak out and not be ashamed in any way, it is also what I am and it is important to state as it is the context of my life… deep breath… start again…). When you are disabled, so much agency is taken from you, so much future, and that is a tough pill to swallow. I want Dan and I to have a family, he wants it so much, but will I be able to cope with that reality, physically it is asking so much? I don’t know. And yet I need to know, fast, as time does not wait. Despite the ways my health is improving because of the specialist plant-based diet I follow, my fybromyalgia seems to be worsening in really unpleasant ways from which I am having to come to terms with. I cannot do many things that most people take for granted, and when I do most things it is painful, not least my hands. Often my health makes it more difficult for me to think clearly. Tell this to people and see how seriously they take you!
it’s lucky that what I’ve been through has baked me into a tough cookie and not an apple crumble.
I am hesitant to share this side of my life, it’s not exactly… appetising! But honesty is so important, that there is a space where we can share our struggles, our successes and failures, and weave the human tapestry. I have recently been inspired by other plant-based food bloggers, Sarah, Liora, Emily, and also the wonderful poetic expression of Danielle. Life isn’t homogeneous or high gloss, people don’t fit into the categories we all endlessly try to jam them into, even the people we know best I realise, with an aching heart; reality is so much more complex, so much more contradictory, so much better, and worse, than we often imagine it to be. We are, as humans, fantastical beings, we create our reality over and over, in often what it a clumsy pre-conditioned way.
Symbolism I think is the richest human language, the way to connect with and try to understand reality best. Modern life and culture especially is packed with symbols, but they are often baser than those which nature so eloquently provides, so much so that we just constantly subconsciously absorb them, and they form our pre-conceptions of the world. We are bombarded with imagery and meanings, endless lists to scroll down, judgments to make, so much that our minds so easily shut down and work on a lower level. As a disabled person you can come off badly. As someone whose problems are often invisible I am often seen as a lazy or unreliable sort, or at worst, some kind of phony. The assumptions we all make about people with impairments need to be overcome, we need to develop our use and understanding of language and the human experience and grow to accept difference and complexity.
My twin sister, Anna, has Down’s Syndrome. She is at the thick end of the wedge when it comes to assumptions made as her disability is so visible, and so obviously easy to connect to learning difficulties, which she has. All her hair fell out at the age of four, so this for Anna has been especially true. She has had a life of being different, and not being able to do what other people can do. She is also now very unwell and permanently connected to an oxygen machine. Last year she nearly died from an asthma attack and is in and out of hospital; she is often in hospital over Christmas, which she finds so difficult as family means more to her than anything. Her health is truly precarious. But ask her how her day is and she will usually sigh, with bliss, and say ‘fantastic.’ She lives with two of her friends, with the help of lots of kindhearted carers, and this to her is heavenly. She has a far busier social life than I have ever had, filled with the most wonderful activities. It is true she cannot fully look after herself, but she is no less of a person, her life is not worth less than anyone’s.
Anna loves life more than anyone I have ever known. Ten times more!
Her talent is rich. She is a wonderful artist. She is intelligent (so what if she wasn’t?). She is an individual woman. Words may be difficult tools for her to wield verbally but she gets there, if you give her the time. She has even given a talk at a university on what it is like being a disabled person with special needs in hospital. She experiences life intensely, she loves intensely and with a generous heart (and will probably beat you at Scrabble). She is very impatient. Very affectionate, and also is a great lover of fruit; she would guzzle this dessert with glee.
love life like Anna! ♥
We all experience life subjectively, in a bubble of our own consciousness. And it is through writing, and all art, as well as touch and eye contact, that I think we can best reach out and share our real experiences (and through the joys of nature and its beauty that we can relax and feel truly blessed to be alive).
It is so difficult to really listen, to connect, to get over ourselves and really see. It is hard to express ourselves, especially verbally I find. I often feel alienated, or a fool. But it’s when we really hear each others words, honest words, we really feel like kin. Or that is my experience. Kinship is so important. The written word is for me the most accessible and powerful, and the most inclusive. Through writing we can share the human experience in such an intimate way.
As a disabled woman, or someone who has health conditions, I so often feel I am shut out of so much that other people take for granted, their human experience, their hopes and dreams, so often cannot be mine. Dan and I (and Tiger, our lovely ginger cat) have our own world full of love and hugs and laughter (and good food), and I am so lucky to have that I know, however precarious it may be, that’s life.
I don’t myself focus on my problems directly, as strange as that may sound, except for in my health diary, (which I must admit has suffered as a result of the wedding upheaval et al, note to self to LOOK AFTER YOURSELF BETTER!). I do try to explain to people about my health and what I’m going through, though to be honest this leaves me quite demoralised, it is so hard to communicate effectively. For myself, I just blast through, I do what I can, often more than I should, and I keep positive and try to keep Dan positive too. I attempt to get the most out of life without feeling too disappointed by my limitations, or fully accepting them, in case this becomes a false boundary I am imposing on myself. It’s complex, right? When my health started to deteriorate in my mid-twenties, after a period of feeling pretty devastated, that hit again as each new, worse problem developed and took over my life, this is what I had to do to survive, to develop grit (something I felt I lacked), and I haven’t stopped. If I collapse in a heap I soon force myself up again. I’m a bit like the terminator! As someone living with anxiety and in the past prone to depression that in itself is a challenge, and a vital one to succeed with.
I will not surrender my life, my self
I will keep on battling, try to take what comes my way with as much grace as I can while fighting to find solutions and to take care of myself as best I am able to
I will live and come to terms with my limitations whilst pushing myself as hard as I can.
Is this my mantra? I suppose it must be! (it’s a bit wordy but it’s not bad). And if coping means getting into bed with some raw choc cake bites and a hot water bottle and watching the Real Housewives of New York on the laptop (there, my guilty secret aired!). So be it. That’s what I do. I only wish there were more episodes…
I feel I’ve lost a lot of creativity (I have to laugh in the above context…). Oh God. I am an artist, but I have to be so bloody practical just to get anything done. We feel we move through mud. Dan, for all his efforts is more cosmic than domestic, (the phrase we have always used). How sad to even try to sacrifice one for the other (when I think of what so many women have had to sacrifice over the years it breaks my heart). He’s a creative mind, a massively talented multi-instrumentalist, a hoarder of comics, toys and things, a political ranter, a highly sensitive and intelligent person, and yet with me I am afraid has now been plunged into a domestic hell of constant under-achievement. I used to be more ethereal, like him, less predictable, negotiating life on an updraft of existential questioning and very loud music, (a pretty angst ridden miserable one often, but still, life was more… abstract). I feel old. And I think people who say that in their early thirties are losing the plot. REWIND. Life is (perpetually) just beginning. And I think that is one of the only truths worth knowing, as a bedrock for life. Build on it. I wouldn’t ever want to go back.
the main way in which I can look after myself in the present and for the future is by eating the foods that nourish and heal, and avoiding the foods which aggravate.
So that is what I am doing. I reduce the pain and inflammation I live with, and also keep myself as happy, balanced and energised as I can through the specialist diet I follow. Fruit is the best boost-giving food I know. Chocolate is a gift, but fruit is a life-giver, a nurturer, a wonderful food, which is taking the least from a plant, and I really like that. Fresh is best but frozen is so convenient. This snack or dessert is simple and quick to make, and goes down a treat. Simply pour coconut cream or milk onto the frozen berries, add a few drops of stevia (which is very alkaline and a great carb-free addition), or a sprinkle of coconut sugar, or your favourite natural sweetener, a good squeeze of lime, or lemon, swirl the fruit in the cream, which will quickly form a creamy, zingy crust, and dig in.
Even the empty bowl afterwards is beautiful…
This is such a lovely, refreshing, easy snack or dessert, the cream freezes quickly to form a crust over the fruit, and the lime gives it a real zing. Power-boost feel-amazing food!
- 1 cup of frozen berries, I prefer a mix of blackberries, raspberries and blackcurrants
- Coconut milk or cream to cover: cream for a richer more luxurious dessert, milk for a lighter refreshing snack
- 6 drops of stevia/ a sprinkle of coconut sugar/ or a mixture of both
- A generous squeeze of lime (I use half a lime), or lemon
I have been listening to… Lady Gaga ‘G.U.Y. – An Artpop Film
I have been watching… 1969 Groucho Marx interview on the Dick Cavett Show
I have been reading… Daphne de Maurier ‘the Parasites’