November 2015 marked 6 years since I became disabled with a medical condition that on a good day, makes it difficult for me to stand up or sit with my legs down (I’m going to omit detailing the ‘bad day’ side of the coin right now).
The 6th anniversary got me thinking; what has my experience of illness and disability taught me?
I do not claim to speak for all those living with chronic illness and disability. I’m also aware of the fact I am privileged in ways that others might not be. That said, here are some things I’ve learned over the past 6 years – in no particular order:
There are a lot of errands I can complete from bed, with the help of the Internet
Online grocery shopping rocks. Grocery shopping was something I truly missed when I initially became bed-bound. Oh the joy of selecting my groceries here at home – in bed – even lying down!
Flexibility of having ‘nowhere to go’ means I can sometimes relieve a load off somebody else’s shoulders
People often let out a sigh of relief when I say they can turn up for an appointment at my home whenever it suits them. They’ve expressed that it has made their day easier – which is a good feeling for me, too.
A garden is a wonderful thing
Our garden is very small, and often a total mess – but spending time out there helps ground me. Nature is nature is nature. I can’t climb giant hills anymore, go bush walking (or visit the beach with any regularity); but when I spend time appreciating the garden, I see that it is as alive and vibrant as any part of the natural world.
Sharing the same medical condition or level of disability as someone is not automatically a basis for friendship
I kind of thought it would be/could be, but no. It’s not fair on anybody to try forcing things either. We all have varied value systems and life experiences.
I can stop pining over my onset-of-illness anniversary, and missed events
At some point equanimity seems to take over. Sure, I still have feelings about missing out on events etc – but I don’t latch onto the pain any more. I remember when this began, I’d write woeful tales on Facebook of all my ‘missing out’. It really hurt. These days I’ve gotten to the point where I can accept (with lightness) the fact that I’m not up to attending particular events. Previously, there were events I would stubbornly attend with great difficulty. Not so much anymore. Looking back, I see how denial of my own needs can lead to unnecessary suffering.
Pets can be magic
Distraction. Fur. Animal-smiles. Joy. Great company for caregivers too.
There are people out there who will love you just as you are, even broken down
Many times I’ve been told how lucky I am that my husband stayed with me. He balks at the notion (something I love him for).
It is possible to maintain a sense of dignity; especially if you don’t take cringe-y situations personally
Understand that all humans are vulnerable and could end up in the same kind of position. Humour can help diffuse uncomfortable situations, too.
The state of my health is not static
Even when living with discomfort and illness all waking hours (and sometimes during sleep), there are still ups and downs, health-wise.
Learning doesn’t have to stop
I am loving learning about whatever takes my fancy. This is a privilege afforded me due to my situation and because I don’t work. I’ve trained my concentration so I can read books again, and am half way through my second year of a (free, home based) course learning about Māori culture. Even watching documentaries can be a great way to learn about topics. Another skill I’ve taken up is playing the ukulele. My first love is the piano, but I cannot easily get up to play it anymore – so I did some research, asked people’s opinions and settled on learning the uke. It’s a really pleasurable pursuit and nourishes the musical side of me that cannot be neglected – without consequences (Dun dun dunnnnnnn).
Self discovery awaits
This can be a fertile time. Ill health does not = stagnation (though it can sometimes feel that way). With mindfulness practice and learning about the dynamics of dysfunctional family systems, I’m experiencing a lot of healing and growth.
Jack Kornfield tells the following story in his book ‘A Lamp in the Darkness – Illuminating the Path Through Difficult Times’:
“In the Jewish mystical tradition, one great Rabbi taught his disciples to memorize and contemplate the teachings and place the prayers and holy words on their heart. One day a student asked the Rabbi why he always used the phrase “on your heart” and not “in your heart,” and the master replied, “Only time and grace can put the essence of these stories in your heart. Here we recite and learn them and put them on our hearts hoping that some day when our heart breaks they will fall in.”
Illness, suffering, loss and grief can break our hearts a little or a lot – and perhaps the time is ripe for certain lessons to reach home. I consider this a blessing.
Virtually anything can happen to anyone at any time
…but don’t expect others to pay much heed to this nugget of information. It possibly takes certain life experiences for each of us to reach the realization on our own.
I don’t need to use so much hyperbole
I used to use a ~~**ginormous**~! amount of hyperbole when describing my suffering. Possibly because I wanted to feel understood – in a way that nobody else can really understand anyhow, because they don’t live my life, in my body. These days I try to be conscious of my use of negative hyperbole. It doesn’t make anyone feel great and is usually unnecessary.
It’s OK to not live up to my prior potential
It just is. Stuff happens. The great thing is that since I got through most of the carping, wailing and denial about my situation, I’ve opened my eyes and taken a look around – to see that new avenues have opened up. This life can be exciting and interesting too.
It’s ok to be ‘invisible’
Becoming ill the way I have can sometimes feel like falling off the edge of the earth. However;
We all have an inherent worth that is independent of others noticing or validating us.
Little children often stare right at people who are in wheelchairs.
(I usually choose to grin in return)
The wheelchair user // pusher dynamic is a strangely delicate thing
Years ago I decided that there are generally two types of people in the world (ha!): bulldozers, and dodgers. You know when you’re in a crowded area and some people (bulldozers) barrel right through, parting the sea of humanity before them – whilst others (dodgers) engage in an uncomfortable dance around the bulldozers and each other? It was most interesting when I, a dodger, was first pushed in the wheelchair by my bulldozer husband! Well… petrifying might be a better word.
There are many aspects to this dynamic that I never would have realised before. Some people think they are being helpful by stopping at every item in a store, for example. Others whizz by and ignore as I indicate that I’d like to stop and check something out. Some position me the opposite way from looking at what I’d like to look at. Some apologise to others around us constantly – as though my very existence requires remorse. Some expect special treatment because I’m in a wheelchair (something I disagree with). It’s really interesting. Thankfully the wheelchair user/pusher relationship with my husband has improved a lot over time. I’m probably becoming less controlling, too. There’s nothing like needing to be pushed around in a wheelchair to smack down the ego.
Things are not always going to go my way – even important things
Sometimes care will be substandard. The house might not be cleaned the way I want or even need it to be. It’s often possible to let these things go and accept situations as they are. Other people have lives and needs of their own (including the need for downtime). I’m pleased to report that the sky hasn’t fallen in.
Some days it might feel like the whole situation sucks – and it is ok to sob your heart out and/wish for death
It does not necessarily mean you’re giving up or falling into a black hole of depression (though the people around you may worry it does. Just explain that this is a ‘moment’ and ask for what you need from them).
It’s ok to blob out and distract
Try to make sure you have consciously come to the decision to do so. Permanently running away from one’s discomfort in an unconscious fashion means you can miss out on your own life. If things have reached this point it may be time to seek help.
At times the most comforting thing is somebody sitting nearby
The sweet gift of presence
Sometimes we have no choice but to surrender
It’s true, but – Gnnnnnnhhhhhh!
Sometimes we lose
Inevitable – and sometimes, strangely, it can be just what we need.
Occasionally other people’s expectations are too high – but I’ve noticed the biggest issues arise when my own expectations are too high
Mostly, my family prefer me to be as well as possible instead of ‘getting things done’ that might not be necessary for me to do anyway.
Even a really unwell body is trying it’s best
For a long while I said that my body had betrayed me – but I’ve since learned that the opposite is true. Symptoms are a sign that my body is trying really hard to keep functioning, despite internal dysfunction. We should all give our bodies some recognition, thanks, and some love!
* * *
So there it is. I’d love to hear what others have learned via their difficult times.
May our difficult experiences bear fruit