Season One: Episode Four
Today’s episode is more personal than previous ones. I share some of my experiences with disability and chronic illnesses, invite us to find some shared reference points, and offer some journal prompts for your consideration.
The poem I read at the closing is called “A Blessing For One Who is Exhausted” written by John O’Donohue and found in his book To Bless The Space Between Us: A Book of Blessings which was published as Benedictus in the UK.
Hello and welcome to Crafted Connections, a podcast by Fully Woven. Here you will find a collection of embodied contemplative activities to calm the nervous system and quiet the mind. Activities such as guided meditations, journal writing, creative arts, and gentle mindful movement.
My name is Monique and I trust and practice these activities to help me live peacefully with chronic disabilities. Their introspective nature is subtle yet profoundly effective at amplifying wisdom. In practicing them with you, I seek to create a space to ease your suffering and a place where perhaps you may feel less disconnected.
Today I would like to share with you some of my experiences in living with chronic illness and disability and then close with some journal prompts for your consideration. This episode is going to be more talky, a bit more personal than the previous ones. It could be argued that life is in and of itself chronic and leads inevitably to death. Yeah. Sure. But for some of us, many of us, that trajectory is hampered by obstacles that cannot be surmounted. For those of us living with the disability of chronic illness the weight of it all can at times be overwhelming. That is what I’m inviting you to consider today.
For me, I live with HIV, myalgic encephalomyelitis, and a really stubborn depression. I’m in my mid-50s and have been navigating illness since birth. I was born premature with a connective tissue disease. There were monthly visits to a children’s hospital which eventually trickled down to monthly, then a few times a year, then thankfully only when needed. And then in my 26th year, for some unknown reason, this disease disappeared a few months after my HIV diagnosis. Thanks HIV! I don’t know if the two things are related? But I don’t think so. I doubt it. I think it’s just a coincidence.
HIV came with a whole host of adjustments. It’s arrival was certainly the catalyst for changing my whole life including where I call home, what I consume to nourish myself, who I spend time with and how I spend my time, and a reignited spiritual life. Lots of big changes and adjustments.
This disease is my “on-paper” disability. There are air quotes around on-paper. The government recognizes HIV as a disability and this has both afforded me some benefits as well as stifling most of my professional ambitions and keeping me firmly established in poverty. For me and in my experience, it’s the stigma and the prejudice has been one of the worst things with HIV. At times, I’ve also had to navigate fear and anger hurled towards me whenever I’ve revealed my status. It was a dark day when the Canadian government enshrined disclosure of HIV status in the criminal code.
Another weird effect – and just can’t be predicted – of my HIV status was that I was unable to cross the border into the States to take my final vows as a Third Order Fransican. Again, the political body was flexing its muscles over something that is not a litigious or criminal issue. In the late-80s the US declared that their borders were closed to people with HIV. Many countries had the same policy and my acceptance to a University in another country – not the United States – was revoked when they found out my status. The fact that the US border was closed to me was not an issue for me personally until a dear friend of mine asked me to attend the birth of her first child. I was excited and I wanted to be there for that. That was something I wanted to witness. But when I got to the border I was denied access because my province had contacted out our medical files to a US-based database. Why was this a problem? Because under the Homeland Security Act border guards have access to medical files. Well, all it took was a few clicks on the keyboard and the border guard knew. Access denied. In the fall of 2009, President Obama lifted the 22-year long travel ban. So, thank you for that.
I’ve lived with HIV for more than half my life and we’ve come to an agreed upon peace. I take my medications, get regular blood work, check-in with my specialists, and do what I can to take care of myself as best as is possible. It still rears its head every now and again with some strange hard to treat infection but for the most part I’ve got this illness sorted.
Now depression? Well that’s huge and I think I’ll leave sharing about that for another day. For many other days. If you live with depression then you know how complex this illness can be. If you’re in a depression right now may you find what you need when you need it. My heart goes out to you. It’s a tough trail to plough and please know that you’re worth all the effort it will take to get through this. Listening to children’s audiobooks is one of my go-to medicines when I’m depressed. I also put stickers on a calendar whenever I do anything generative. I do that so that whenever my brain says “hey loser, you’re such a loser. You never do anything.” I can point to my calendar and tell my brain that it’s lying to me. I do stuff. See? Look at the stickers on the calendar. And by ‘anything generative’ I mean things like, brushing my teeth, eating something, opening my curtains…. getting out of my pajamas. I think you get the idea.
The biggest and longest standing disability in my life is myalgic encephalomyelitis which is also referred to as chronic fatigue syndrome. However I am vehemently opposed to that phrase because the implication is that a good nap or vacation will cure what ails me. Ha! So not true. This is a metabolic disorder on the cellular level. Let me put it like this – you know the metaphor of rechargeable batteries representing our energy levels? Phrases such as, I’m fully charged. My batteries need charging. My levels are lagging. Etc. With myalgic encephalomyelitis, or ME as it’s also known, my rechargeable batteries cannot charge to 100%. It is a biological impossibility. I am alway in some state of some sort of fatigue.
This fatigue shows up differently for folks living with ME and for me it comes as most often as blurred vision, migraines, rashes and hives, and confusion. My batteries can crash unexpectedly and can be drained to zero within a few moments. It can be shockingly quick. It’s a terrifying sensation to feel my capacity starting to shut down. I visualize all those dials and switches in an airplane cockpit and I’m watching everything needed to keep me airborne turning off. I know a crash is imminent and the only thing I can do is find someplace safe to land. This is the primary reason why I am housebound. My home is my safe place.
There are many things that trigger these crashes. Synthetic scents are a big one for me and two weeks ago I walked through a cloud of perfume at the grocery store. It was a split second in my day yet encountering that perfume took me down for a week and a half. I lost 10 days of functioning because of that bloody perfume. It makes me angry that there are ridiculous levels of toxins in seemingly innocuous items. Over the years, I have had to dismiss certain venues and social events because I know they will be scented. I carry a scent-response kit of my own devising with me every time I leave my house.
I know the person wearing the perfume didn’t mean any harm. I know it wasn’t personal. I imagine the person wearing the perfume did so as part of their daily ritual. Or maybe a little spritz was part of them getting fancy for going out to the grocery store. I think we can all agree that in these pandemic times “going out” has become far more eventful and a little dab of your favourite perfume could be a comforting familiar ritual. For me, that perfume was an unfortunate cloud of neurological toxins.
Are you living with illness? We all experience illness and we all experience our ability being limited. In these next few journal prompts I’m going to ask you to consider illness as it presents in your life. Maybe you write in your journal. Maybe you sketch something. Maybe you plant some seeds and tend to their growth. Or maybe you sit in quiet contemplation.
Before I share the prompts take a few moments to take a few deep breaths. Maybe close your eyes or soften your gaze. Feel all the places where your body feels supported. With each exhale sink deeper into that support. On the inhale bring in some space to your brow, temples, and eye sockets. Maybe even sigh with your next exhale. Allow your shoulders to soften and your jaw to release. Inhale deeply and exhale fully.
Our first prompt is bring to mind the first time you caught a cold. Or the first time that you remember. How old were you? Who tended to you? Can you describe your surroundings? The symptoms? How long did the cold last? What stands out about this memory?
Our second prompt is what is your experience with disability? Do you live with a disability yourself? Does someone in your life live with a disability? How has your understanding of disability changed over time with your experiences? How has it not changed?
The third prompt is what is your first initial reaction or response when you encounter someone who you can see is disabled? What and/or who has informed this response? Are you comfortable with it? If yes, why? If no, why?
The fourth prompt is what are your experiences with invisible disabilities? What are some of the unique struggles with invisible disabilities – use your lived wisdom or imagination?
And the fifth and final prompt is how do these two phrases land for you? When you hear them, how do you respond? What arises for you? So the terms/phrases are a person with disability, a person living with disability or a disabled person. Someone living with disability, a person living with disability or a disabled person. Are they different? Do they convey different sensibilities? Different things? Something to consider. Which do you prefer?
So I wanted to close with a poem. A blessing from John O’Donohue who is my favourite poet, philosopher, and theologian. He has a poem… one of his poems… he calls it a blessing for one who is exhausted. It’s a poem that I read quite often when I am bedridden and really quite locked into fatigue. And I’ll share it with you in closing.
Poem: A Blessing For One Who is Exhausted by John O’Donohue.
When the rhythm of the heart becomes hectic,
Time takes on the strain until it breaks;
Then all the unattended stress falls in
On the mind like an endless, increasing weight,
The light in the mind becomes dim.
Things you could take in your stride before
Now become laboursome events of will.
Weariness invades your spirit.
Gravity begins falling inside you,
Dragging down every bone.
The tide you never valued has gone out.
And you are marooned on unsure ground.
Something within you has closed down;
And you cannot push yourself back to life.
You have been forced to enter empty time.
The desire that drove you has relinquished.
There is nothing else to do now but rest
And patiently learn to receive the self
You have forsaken for the race of days.
At first your thinking will darken
And sadness take over like listless weather.
The flow of unwept tears will frighten you.
You have travelled too fast over false ground;
Now your soul has come to take you back.
Take refuge in your senses, open up
To all the small miracles you rushed through.
Become inclined to watch the way of rain
When it falls slow and free.
Imitate the habit of twilight,
Taking time to open the well of colour
That fostered the brightness of day.
Draw alongside the silence of stone
Until its calmness can claim you.
Be excessively gentle with yourself.
Stay clear of those vexed in spirit.
Learn to linger around someone of ease
Who feels they have all the time in the world.
Gradually, you will return to yourself,
Having learned a new respect for your heart
And the joy that dwells far within slow time.
Thank you for listening. I know it’s a theme that we’ll visit again in our shared contemplations. Take good care and do something kind for yourself today. And until next time, peace dear one.