Pagans With Disabilities & Chronic Illnesses

Spiritual Accessibility for All

I’ve been thinking on this post for sometime as I try to navigate an on going acute stage of my illness and all the things I want to do. What is interesting is that I am now very close to someone who is similarly incapacitated as I am and seeing in her face and affect the same thing I see in mine when I look in a mirror has been eye opening. Some would call it frustration.

That doesn’t cover it really.

Wanting to spend quality time with your children and being unable to manage it because of your body’s unwillingness to cooperate isn’t frustrating. It is rage inducing. And even that kinetic energy that is part of rage is thwarted because of your body’s inability to hold on to it. It flows right through you seeping out of your pores in the sweat of an sudden unexplained fever that leaves behind the coldness that seeps into the bones of your soul.

Wanting to be able to focus on a project without your body being so tired you find yourself asleep on your desk instead of working. Then feeling the pulses of anger instigate strongly and weaken as the waves of energy passes through your body defying every law of physics you know. After all momentum should build not dissipate.

Measuring your body’s progress in the number of minutes you can spend outside the bed versus in it. Knowing you need to change your sheets and being unable to oust your body enough to get that done. Looking at piles of clean laundry un folded because you can’t rally enough to get them folded.

My friend’s attacks come as Fibromyalgia flares and mine often present in terms of acute bacterial infections in various locations of my body. She suffers from indescribable pain and I suffer from fevers, chills, and malaise. Both keep us from being as productive as we would like to be.

To be fair, we are so stubborn between the two of us that we do get things done. The absolutely necessary things that must be done get done.

Hierarachy of Needs

For those of us with chronic illness you must be willing to live with a strict sense of a Hierarchy of Needs. There are the things that have to get done, needs to get done, hope to get done, and wish to get done.

The Have to Get Done list involves commitments that demonstrate the ability to bring a project or collaboration to a complete halt if you do not work on them. For me this is always Coven things and Circle Sanctuary Full Moon Circle things. These two issues would suffer the most if my efforts with them stopped, effecting many people and leaving events displaced by my inattention.

My coven relies on me to help coordinate and run Sabbatt Celebrations eight times a year and Full Moon Circles Virtually 13 Moons a year. At Circle Sanctuary I am part of the team that coordinates and puts together the Full Moon Circles live on YouTube each Full Moon. Anyone can be replaced but when you committee even if you are chronically ill, your showing up is crucial to the whole and as isolated as your illness can make you, you desperately want to be part of the whole even when you can’t be wholly well.

Also on the Have to Get Done List is feeding my family, cycling laundry, cleaning the house, walking the dogs, and general things that must be done to get through the living part of life.

Needs to get done are items that are required for living but not crucial to living. Folding the laundry is often in my needs to get done list. I often have enough energy to cycle laundry but not enough to fold and put away the laundry. This is why I only dust rooms in my house every 6 months are so and my husband is responsible for cleaning the bathrooms. I often put off dinner plans until it’s too late to do anything about them. Because the Needs to Get Done list includes meal planning and grocery shopping.

The Hope to Get Done List are things like this column, writing on a current book project, posting on TikTok and YouTube and other socials for my podcast Urban Unwitches. Cleaning my office or working on crafting projects. are all part of my Hope to Get Done List.

The Wish I Could Get Done are things that seem out of my reach because of my current level of acute illness. This can be everything listed above that doesn’t other wise get done or things that require dedicated consistent work to achieve like Gwinnett Pagan Pride Day – an idea I have had for five years that is still just that – an idea. It is not lack of knowledge that keeps me from doing it is lack of energy that keeps me from doing it.

Clearly, my Hierarchy of Needs is more complex than what Maslow had in mind.

And this is where that impotence begins to rage. I am overwhelmed by my in ability to be consistent in all areas of my life. I am demoralized by my inability to get movement on things that are desperately important to me. I am run down by the lack of understanding of the struggles of those with chronic disability. I am struggling with the desire to be seen, heard, understood, and supported by the greater pagan community.

I had a friend once tell me that I had to be saddled with a debilitating illness in order to keep me from trying to taking over the world a la Pinky and the Brain. Unfortunately, that just leaves me hissing and spitting into the wind with the Impotent Tired Rage of a scared orange kitten, while my inner lion sleeps overcome by illness to do much else.

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