Trying to be positive and ‘better’ to make others feel better is what I’m giving up for Lent.

‘Being positive’ has to be one of my pet peeves. Finding joy, however, is my absolute favourite thing. Can you tell he difference?

I feel I can only write about finding joy if this is within the context of a true acknowledgement of illness and suffering. Otherwise I would simply be contributing to further oppression of sick people.

Some people cannot understand that their insistence in urging sick people to be positive or to get better soon or to not focus on their illness, is akin to oppression, such as homophobia.

I have to admit I’ve been ignorant in many ways about disability until recent years. But disability phobia, is like homophobia: ‘Your pain / illness offends my world view, please don’t display it in public.’ There is a taboo about complaining.

Well, to those people I would answer, ‘Some people are disabled, get over it’.

When someone is ill or disabled and they are told to hide their suffering, their complaints and their distress and to focus on the positive, this can really feel as if they are being told to hide away their authentic and true identity because it distresses others. If one’s condition is long-term or permanent this is very isolating and cruel. For many of us it means we can limit our socialising to days when we feel more acceptable. This is pretty harsh if we are in a situation where those days are few far between.

The implication is that the ill or disabled person is not ok as they are and needs to change to be acceptable. And it builds stress and dissatisfaction in the person who is ill or suffering.

What if…? What if it’s ok to be ill? What if pain and suffering is ok? Part of being human, part of living a life? What if we are not all designed to be the same, to have equal measures of health? What if health is measured by the healthy, and their standards are ‘normal’ because they decide what is normal? What if how I AM is normal? Ok even?

What if you allowed it into your awareness as an aspect of your own self? That you too suffer and are ill? And are likely to suffer and be ill again? What if you could stop interfering with my being and love it as I am learning to?

Are we allowed to accept our illness without accusations of being negative and defeatist and without a legion of people opposing this thought with their ‘vision boards’ and ‘thoughts become things’?

I actually knew a family where one partner left the other because the person who had fallen off a roof and broken their spine would not trust in Jesus enough to stand up out of their wheelchair and walk and believe they were healed. This sounds appalling, does it not? And yet non-religious people still push this type of ‘mind over matter’ ideology onto me with no more kindness than such faith healers!

What if I let you into my world and how I am surviving? Let me tell you about ‘The Hole’.

I have fallen down a deep hole, and I initially spent a lot of time and energy scrabbling up the sides of the hole getting more and more distressed and ill and ashamed about my inability to get out.

Now I am sitting in the hole and enjoying what I can in here. I try not to think about the places I cannot go and the activities I cannot do. I enjoy the comfort and warmth of the hole, I appreciate the hole is more comfortable than some. I enjoy a cushion or a vase of flowers or a book down the hole. It’s is horribly disappointing to have fallen down a hole, to have lost the freedom of my life on the surface, but these things happen to many, more people than you’d expect, you don’t see them but they are there, down other holes.

It’s quite isolating down the hole and I can’t join in things or travel as I’d like. I’m in a smaller space and can’t see ahead. But this I have control of, how much pleasure and enjoyment I can find down here, or conversely how much I get in a tizz about being down here.

Yes, maybe one day the floor of my hole will begin to fill up and I might get nearer the top, I might get out. I know. It could get better, stay the same or get worse. I have choice about how I am in the hole, not whether I’m in it or not.

Down the hole and making it comfy is more peaceful, healing and healthy than stressing and nurturing dissatisfaction. As you know if you have read my previous posts I can find joy in all sorts of things from socks to teacups and sunshine.

Stop nurturing dissatisfaction, don’t get caught up in this is a bad thing and needs sorting, that you need to urge me to get better. If you or I nurture dissatisfaction I end up thinking about what I wish I could do and ought to do and should try harder to do. I am doing something huge and that is relaxing my muscles, switching off my stress, allowing my body to reset calmly and know there is no danger.

Letting there be room for not knowing is the most important thing of all. When there’s a big disappointment, we don’t know if that’s the end of the story. It may just be the beginning of a great adventure. Life is like that. We don’t know anything. We call something bad; we call it good. But really we just don’t know.” Pema Chodron

Acceptance is the most courageous part of living the best life possible. Fighting to be ‘better’ is counter productive and exhausting. If you can be loved as you are and if you can love yourself as you are then that IS better. Better than most people able bodied or not.

Others who urge positive thinking need to examine their urges for us to be better because is not experienced as loving but critical. It implies there is something wrong with who and where we are and that we aren’t trying hard enough. So it’s victim blaming.

A big step for me has been to separate out my current illness and the cancer that led to it. Currently I am in pain all day and night. I have sharp nerve pain and cramps, pins and needles, aches, muscle spasms, burning joints, scar tissue, hernia pain. I have 24/7 nausea and little appetite though I still eat because the people who love me are great feeders and good cooks! I have to be near a toilet all morning and that morning process is tiring and difficult for 3 hours a day. I am so fatigued I usually have to be helped to dress and don’t always dress, I cannot drive and need assistance showering or bathing. I can only do minimal housework and use a mobility scooter and walking stick (not at the same time).

Has it happened yet? Have you read that and wanted to change my reality? Have you wanted to cure me? Or to suspect me of exaggeration? Have you wanted me to stop listing my complaints? Have you wanted to send me an article or a supplement? Have you wanted me to be positive? Have you harboured the thought that I’m not trying hard enough? Have you wanted me to move on to talk about the good stuff? It’s only natural to feel and think those things but please think carefully before you act on them. Is it to help me? Or you?

And now the easier bit – phew!

It is all bearable. I am alive. I have reframed my experience, I tell myself many times a day that I am not in any present danger and nothing bad is happening, i tell myself that my body is different and disappointed, I try to avoid the word ‘pain’ unless I’m at the hospital and I tell myself my body is different, it feels different and its horribly disappointing for it to be so different I can’t walk. Disappointing does not stimulate stress like the idea of illness or pain. I do find joy down the hole. And I have visitors.

5 of my favourite women (18 of us were at the charity yoga)

The last couple of weeks have been especially lovely. I have had several female friends who have helped me, and my partner who is usually sole carer. Imogen and Ruth have come and stayed in the last week and I spent the previous weekend with others. Several women put pain ease cream (which Nicola first bought for me and which another friend had collected from Hunky Dory for me) on my very sensitive feet. Cups of tea. Hand holding and cuddling I’ve had loads of! Imogen became quite expert at appearing beside me and dropping cbd oil into my mouth twice a day! All my women friends taught each other how to ‘burp’ the hot water bottle and when they drank wine I had a hot chocolate with squirty cream. We all got together for a very special women’s yoga class with Phillipa who nurtured our heart energy. We all raised money for charity (women down ‘holes’ worse than my own). We had a lovely time at Justine’s house sharing food and warmth. I love that female nurturing energy.
Thank you to all my women friends who ‘showed up’ when I fell down the hole and during my time down the hole. You came and joined me without judgment and made it so lovely and warm. I can’t get out of the hole, so you joined me in it. You are all goddesses to me.

We raised £240  Luleki Sizwe and £100 for Nepal at at charity yoga class run by Phillipa from Oakwood Yoga.
Please feel free to donate to either of these charities.

Luleki Sizwe offers shelter and support to lesbian, bisexual and trans women in Cape Town where there are regular rapes and murders of women due to their sexuality. https://www.luleki-sizwe.com/

Phillipa co-ordinates Derbyshire Unites for Nepal a charity formed after the earth quakes four years ago, we are currently raising money to help fund teachers for a school.