“HO MON MURYO SEI GAN GAKU
Dharma gates are beyond measure, I vow to enter them all”
— the third of the Four Bodhisattva vows chanted daily in Zen monasteries
I love the idea of gateways, and openings, small passageways by which we can access new land and horizons. For me, gateways bring to mind literature such as Alice in Wonderland, The Secret Garden and The Lion, the Witch and the Wardrobe in which passages to somewhere else are integral parts of the story.
“There is a crack in everything,
that’s how the light gets in”
— Leonard Cohen. Anthem (The Future, 1992)
One of the effects of chronic severe illness is that it cuts you off from the outside world. When I was first ill there was no real internet to speak of, and the only people with email addresses were those at university or in forward-thinking companies. Connection to other computers was carried out through FTP (File Transfer Protocol) requests and virtual logins.
At this time, people in the illness community connected with each other via lists of postal addresses and landline numbers. We sent postcards and conducted occasional and fairly brief phone calls. But these were welcome contact with something outside of bedroom walls. Continue reading
“Who cares when you’re on the floor
Just looking at the sky and praying for the light?”
— The Rose of Avalanche, Who Cares (Velveteen EP, 1986)
Chronic illness comes with different levels of severity. At the mildest level, it is something that requires medication or adjustments to be made in an otherwise seemingly normal life However, even this can be incredibly impactful in terms of having to plan around the needs of a medical condition.
At its most severe, long-term ill health deprives people of the ability to engage in some very basic activities, such as being able to look after themselves and do domestic chores.
“Oh, who can see in the eyes of fate?
All life alone in its chronic patterns
Oh, swan, let me fly you
To the land of no winds blowing”
— The Incredible String Band, The Eyes of Fate (5000 Spirits or Layers of the Onion, 1967)
When I first got ill, there was a school of New Age thinking that said that illness is a decision and you are choosing to manifest it. Otherwise, it is a life lesson which is there to teach your soul something valuable and will leave once you have learned this.
I call bs on both.
Recently, books such as The Secret now seem to be coming up with similar nonsense, although the ‘Law’ of Attraction has been around for some time now, seemingly stemming back to the writings of Esther and Jerry Hicks from the late 1980s and onwards. They wrote books such as Ask and it is Given: Learning to Manifest Your Desires which are said to come from an entity called Abraham who is ‘interpreted’ by Esther. Apparently ‘Abraham’ consists of a group of entities and has described themselves as “a group consciousness from the non-physical dimension”. They have also said, “We are that which you are. You are the leading edge of that which we are. We are that which is at the heart of all religions.”
“Rats, rats lay down flat
We don’t need you, we act like that
And if you think you’re un-loved
Then we know about that…”
— Syd Barrett, Rats (Barrett, 1970)
Despite my best efforts, my illness continues to worsen. This is evident from the amount of energy I have, the level of pain and the strength in my muscles. It is a slow decline but insidious.
The list of treatments I have tried is long* and I have attempted not to leave any stones unturned. The treatments I have not tried are either too expensive or do not meet my criteria of scientific credibility or effectiveness.** I have also had a pretty exhaustive range of tests.***
At present I am seeing a shiatsu therapist who is very lovely and has good hands. I don’t know if it is going to help but it feels good to have someone who knows what they are doing pressing into my muscles.
“At the day’s end I found
Nightfall wrapped about a stone.
I took the stone in my hand,
The shadowy surfaces of life unwound,
And within I found
A bird’s fine bone.
I warmed the relic in my hand
Until a living heart
Beat, and the tides flowed
Above, below, within.
There came a boat riding the storm of blood
And in the boat a child,
In the boat a child
Riding the waves of song,
Riding the waves of pain.”
— Kathleen Raine ‘Three Poems of Incarnation’ I
Today I have a lot of pain. My muscles are weak, especially in my back. Everything feels tight and I will rest most of the day.
Before this illness, I was a relative novice when it came to pain. Most of what I experienced in early life was the acute pain that comes from a relatively soft body meeting a rather harder object in the form of tables, pavements, tree branches and even the bony parts of other human beings. The vagaries of chronic pain were certainly an unknown quantity.
“Don’t you want somebody to love
Don’t you need somebody to love”
— Jefferson Airplane
I started this blog out with the intention of writing about my experience of living with chronic illness and practicing Zen Buddhism but, as you may have noted, my mind seems to have other ideas and goes off on all kinds of tangents.
For those of you who have practiced meditation, you can probably see a relationship between this and what happens when we try to get our awareness to rest on one particular thing, such as the breath. We can do it for a short time and then find all kinds of apparently random thoughts coming up which have nothing to do with breathing!
“I’ve been out walking
I don’t do too much talking these days
These days”
— Nico, These Days (Chelsea Girl, 1967)
“Every day, think as you wake up, today I am fortunate to be alive, I have a precious human life, I am not going to waste it. I am going to use all my energies to develop myself, to expand my heart out to others; to achieve enlightenment for the benefit of all beings. I am going to have kind thoughts towards others, I am not going to get angry or think badly about others. I am going to benefit others as much as I can.”
― HH XIVth Dalai Lama
As much as this blog is supposed to be about anything, it is a journal about my illness and Zen practice. I am not sure I have entirely been focusing on that thus far so am going to try to keep more on track from this point onwards. So, today, I intend to set out what a day in the life of a chronically ill Buddhist looks like, or at least one that looks a bit like me.
Some of you know me fairly well. Others not so much. So, some of this information may come as a surprise or not at all.
My illness is one involving limited amounts of energy and very limited muscle stamina, especially in my legs. I sleep and rest a lot. I am pretty much confined to one room and rarely leave my flat/apartment due to limited mobility. I am fortunate in having a bedroom door that leads to the outside world, and a rural location replete with trees, birds and squirrels.
“I wanna live, I wanna give
I’ve been a miner for a heart of gold“
— Neil Young, Heart of Gold (Harvest 1971)
The trouble with having a chronic illness is that you often cannot tell what is a new and significant symptom, and what is part of the ever-changing smörgåsbord of joy served up by your pre-existing condition.
So, today, when I started to experience bad chest pain and finding it harder to breathe, I called a friend to talk to me until the pain went, except it didn’t. So, he suggested I call an ambulance and they suggested I go to hospital, so that is what I did.
Four hours later, after several electrocardiogramsin the Accident and Emergency department* of Queen Elizabeth the Queen Mother hospital in Margate, I was informed that I am unlikely to die today, and probably not tomorrow either. The doctor also gave me some helpful signs to tell a cardiac event from the kind of chest tightness caused by muscle pain, prodding me in the pectorals several times to demonstrate this!
*the ER for American readers
Living With Narwhals 