Updated: Aug 6, 2020
Welcome to our second recurring column of the KALMA Blog: #SpookySpoonie !
- Author's Note: As of Aug 2020, Spooky Spoonie has been changed to Disabled Darklings. For information on this change, see post "I'm Disabled." The text for this post has not been modified to reflect this change.
For those who are unfamiliar with the term ‘spoonie,’ it comes from Christine Miserandino’s essay “Spoon Theory.” In an effort to explain life with a chronic illness to her friend, Christine grabs nearby spoons as visual aids. In short summary, each spoon represents a unit of energy, and each day begins with a fixed number of spoons. Every task throughout the day consumes spoons, requiring the rationing of energy, and any ‘overspent’ spoons are stolen from the next day.
In this series, guest writers with a variety of conditions and impairments will share about their experiences as Spoonies, and how their health affects their relationship to life and death.
As a Spooky Spoonie myself, I thought I would get things started, and I’m really excited to feature some amazing guests going forward!
What are you passionate about? How do you identify (what are the terms you use to describe yourself and your condition)?
I’m AJ - I’m a 26 year old female, death positive fine artist and the owner of KALMA. I'm passionate about doing everything I can to bring beauty, confidence and kindness into other people's lives.
I usually call myself chronically ill, chronically uncomfortable, or say that I have an invisible illness and changing ableness.
Tell us about your disease, impairment or condition!
I'd always been flexible, but when I was 20 I started having recurring joint injuries and increased laxity in my joints. I was diagnosed with both Joint Hypermobility Syndrome and Ehlers-Danlos Syndrome, and possible Mass Cell Activation Disorder and Dysautonomia, but my healthcare team couldn’t come to a consensus. New research indicates I may actually have a condition called Hereditary Alpha-Tryptasemia Syndrome which can mimic all of the above.
What all of that means is that I have very loose joints that are susceptible to dislocation and separation, as well as hypersensitive allergic responses and a difficult time regulating my autonomic nervous system (heart rate, body temperature, blood pressure, and so on).
How does it affect your day-to-day life?
There are the big ways and the small ways.
The big ways are things like giving up my career as a custom fabricator and my hobby of sailing, or waiting to start a family because my pregnancy could have complications.
Then there are the dozens of small daily considerations and adjustments to be made. I have to be very careful with what I eat, as well as what products I use on my body or in my home. My clothing is carefully chosen so as not to irritate my skin. I need help with odd tasks, like opening wide mouth jars or moving cast iron pans because those tasks dislocate bones in my hands and wrists. I have my own special ways of doing everything from carrying something heavy to crushing garlic.
If you ever spend time with me in person, you’ll see (and hear!) me reflexively relocate my joints throughout the day… sometimes I forget not everyone does that!
How does your diagnosis and/or condition affect your relationship with death?
Because my condition particularly affects my joints, I’ve become very acquainted with the skeleton inside of me. I’ve always been interested in anatomy, and I memorized the bones in the body at a young age. It wasn’t until adulthood when I understood deeply that the skeleton, a symbol of death, was inside me and that therefore, that symbol of death *was* me.
My body feels more frail, less stable, than it used to. I don’t feel invincible like I once did - I feel very mortal! But both my sickness and mortality encourage me to spend the time and energy I do have on people I love and things I’m passionate about.
What is one thing you would like others to know about interacting with someone with your condition?
Accept when people tell you that they can’t do something.
It’s really difficult to not be able to do things you used to be able to do, and even harder to say ‘no’ to things that you could but shouldn’t do. If someone is expressing what they are able to take on, believe them, no matter if they look sick or not.