Tag Archives: easter

89/365 – Happy Chocolate Day

As tomorrow is Easter, and I’ve already written my views on what people with myasthenia gravis can learn from religion it seemed appropriate today to write about the best human invention, chocolate. 

Although I’ve been trying to be dairy-free since January, as part of a diet recommended to people with myasthenia due to the inflammation dairy causes, chocolate has been the downfall of my regime. There are milk-free alternatives which are delicious but they are expensive (£2.99 per bar). The ‘go without’ option just hasn’t  really worked for me, so I’ve been sticking to 60%+ dark chocolate (most of the time). I find due to the high percentage of cacao dark chocolate satisfies the cravings with a square or two, when it can take a bar or two with milk or white chocolate.

For anyone who likes the fine things in life, the good news is that chocolate in moderation, in particular dark chocolate, has lots of positive health benefits.

So stop beating yourself up this weekend and embrace the fact that a square of man’s best greatest creation can lower your blood pressure (which prednisolone can increase), get rid of bad cholestrol, improve your mood and protect your skin from harmful UV rays (particularly helpful for those of us on aziathioprine).

Happy Easter! (If you live in London, did you know there is an actual chocolate museum in Brixton? Read about that and more here)

87/365 – Things people with myasthenia can learn from religion

As today is Good Friday, I decided to write about what can be learned from religion when you have myastheia gravis. I came up with this idea after seeing the amount of social media activity that linked having myasthenia gravis to coping with it through religion. People praying for each other and people writing about God’s plan for them dominate a lot of talk. Whether these people have found religion after their diagnosis or not is irrelevant, it helps them cope and it made me question whether there is something non-religious people can learn.

My history with religion

At this early stage I must confess that I do not subscribe to any religion. Although brought up going to a Christian Sunday school, I decided at a young age that I didn’t buy the idea of an omni-potent, omni-present, god and moved away to worship at the temple of Five and the F.R.I.E.N.D.S cast. In my late teens I swithered about converting to Buddhism after an interesting module in Religious, Moral and Philosophical studies. However the one thing I couldn’t get on board with was letting go of desire – when I desired something I felt truly alive and I wasn’t about to give that up. 

Since then, I have visited many sacred sites and read about most of the main religions, but I’ve yet to find one that fits for me. Buddhism is still probably the closest, but I’m not ready to fully commit.

Not religious but not quite an atheist

At university I flirted with the idea of branding myself as an atheist when thinking about how I identify. And then I met other hard-core atheists. They could be equally dogmatic, equally stubborn and no more like me than people who belonged to religions I knew little about. They always wanted to talk about why god didn’t exist – I had worked that out in my pre-teens so it didn’t hold much interest for me. I get it – it’s hard to let go of that need to disprove it when there is so much conflict caused by religion on a global scale. But the frustrated efforts are mostly wasted in my view. Yet any time I raised the potential positives about religion, they didn’t want to know. 

Things we can learn

Last year I came across Alain de Botton’s Religion for Atheists and it hits the nail on the head with so many points. It starts with ‘The most boring and unproductive question one can ask of any religion is whether or not it is true(it)…’ He continues ‘that it must be possible to remain a committed atheist and nevertheless find religions sporadically useful, interesting and consoling and be curious as to the possibilities of importing certain of their ideas and practices in the secular realm’. He goes to on to break down what a society that doesn’t believe in god can learn from religion’s sense of community, kindness, education, tenderness, pessism, perspective, art, architecture and institutions. 

So here are my thoughts, influenced by the wise Mr De Botton, about what people with myasthenia gravis can learn about coping with their illness from religions. 

Hope and acceptance

The people with myasthenia who also have a religious belief seem more hopeful. They seem less focused on when their suffering will end, and more content that it is, for the most part, out of their hands. I acknowledge the importance of having good medical treatment and as healthy a lifestyle as you can manage. Once you have those things, agonising over your condition can only do more harm than good. 

We can learn from the Buddhist idea of letting go, as it is believed that attachment is the root of all suffering. According to the Dalai Lama, we have pinned our desires on a non-enduring entity (our health) and if we can free ourselves we will be able to find joy in the present. This post sums it up neatly.  

Tenderness

One of the things, Alain writes about in book is the cult of Mary and our need as adults for tenderness from a kind mother figure. He says that across religions, there is a warm mother figure, from Isis in Ancient Egyptian times to Chinese Buddhists’ Guan Yin, due to our desire in times of need to be held and physically protected. Atheists, he writes, haven’t grasped that reverting to childlike tendancies in times when we are suffering isn’t weak. 

So what can we learn from this? To not beat ourselves up if we feel from time-to-time that we want to be looked after and that we crave tenderness. It is part of the human condition and if the people in our life won’t give it to us we should access whether they are a good fit. 

A sense of community 

Following on from the last point, if we don’t find tenderness in religion we could find it within our communities. 

In the community section of his book, Alain writes that religious building give us the ‘rare permission’ to lean over and say hello to a stranger without being thought of as predatory or insane. In the online and community meetings of people with myasthenia gravis we also can quickly speak openly and vulernably about ourselves – we have this same sense of common purpose. 

Alain writes ‘We become dull when all we seek to do is assert how well things are going for us, just as friendship has a chance to grow only when we share what we are afraid of and regret.’ I think this is something the myasthenia gravis community has already grasped so if you’re not involved already it is available if you want this level of acceptance.

Kindness

Many religions have a code of behaviour that believers should subscribe to including being kind to others. While atheists argue that freedom is the most important thing we can have – Alain argues that ‘real freedom does not have to mean being left wholly to one’s own devices; it should be compatible with being harnessed and guided’. He argues a code is needed because religions understand how hard it can be to sustain goodness and that thinking about some greater being watching makes acting nicely easier. 

So what can we learn? As a person with myasthenia, you are likely to know how it feels when someone is unkind whether intentionally or unintentionally. So try to use that experience to make sure you are being kind by default to others. Try to look past sly remarks and let go of thoughtlessness. 

Another part often built into religious codes of conduct is giving to charity or committing charitable acts. Think when you are feeling strong enough what you can do for others in the myasthenia community. A kind word can go a long way.

Letting go of anger

Alain writes about the Jewish day of atonement (Yom kipper) where you apologise for anything you have done in the last year that you feel ashamed about. It can be that you have ‘frustrated, angered, discarded casually or otherwise betrayed’ them, but your faith demands that you offer ‘fullest contrition’. 

We all know how difficult it can sometimes be to admit we were wrong or make ourselves vulnerable (‘it insults our self conception – we are in pain and at the same time offended that we can be easily so’). But by doing so, we will allow ourselves to let go of negative emotions. Part of this could be letting go of anger we feel about our condition and/or shame that we have taken out that anger on others we love. If we apologise about this, we should feel lighter.

Role models

The last section is on role models. As Alain puts it ‘Christianity recognises the extent to which our concepts of good and bad are shaped by the people we spend time with’. However, the people in our lives aren’t always a paragon of goodness and that’s why in Catholicism saints are important.

In the myasthenia gravis community, we need positive role models to help guide those who are struggling, to lift them up and give them the energy to keep fighting or the wisdom to know that this bad spell will pass. 

I hope that by using these lessons above to be a role model to the community, and I ask if you think you can be too?