I suffer from a genetic disorder that often wreaks havoc in my life. I go from a vivacious woman who has boundless energy to a woman who can feel the fatigue in her bones, her muscles, her veins. I have been in the midst of this battle in the last few months. I lost my little part-time job, and I have sat down to write several times feeling unabashed epic failure.
Neurocardiogenic Syncope with Dysautonomia is a rare condition that causes automatic body systems to malfunction. When life is going well for me, I can ignore the discomfort or push through the wall of fatigue. When I cycle through a phase like the one I am in at this moment, everything in my life comes to a grinding halt. I fall off Facebook first because it is the easiest to give up and then slowly I fall off of more and more.
There are so many projects that need to be done – so many things I want to be doing, and none of them are conducive to bouts of serious or chronic illness. Quite frankly, it is very depressing.
I know I am not the only earth-based practitioner who experiences disability or chronic illness and disorder. I suspect what distresses me the most is the distress of other earth-based practitioners similarly afflicted… especially those, like myself, who have taken oaths to lead, teach, or in other ways direct those around them.
When I am too tired to do much of anything else, I worry about my family coveners who aren’t getting my hands-on attention. I worry about the Full Moon activities that may or may not happen, or the upcoming Sabbat. I worry about letting people down because I have made commitments that are now interrupted by my body’s temper tantrum, which I am unable to control. I watch as life continues to whiz by without me actually being a part of it, and I worry that it is moving so fast that I will never find the speed to jump back into it.
Like most who suffer from bouts of chronic and/or recurring illness, I cannot help but think. When my body breaks down, my mind doesn’t follow. It is alert and analyzing everything that is (or is not) going on around me. I cannot help but blame myself for the condition I am in. I cannot help but worry that I have soiled my reputation and made myself out to be an inconsistent twit who can’t handle anything. I am always looking back to when I wasn’t this way and trying to figure out how to get back to being that person.
To Family Coveners and Friends with Loved Ones Like Me
If your loved one suffers from a chronic condition and is also a leader, when you see them faltering, step up! Surely the loved one has given you enough tools and resources to plan the next full moon or the next Sabbat. My family coven has stepped up and planned both. They are working on Litha and the Full Moon and asking me to just attend. Show up and let your group do the work.
Consider going over your loved one’s house and doing light house work. It is amazing what a little vacuuming and dusting will do for the spirits of the chronically ill.
I wouldn’t encourage you to cook anything, however, because many who are chronically ill also suffer from food allergies. Go over and sit with your friend, sister, or high priestess. Just sit and talk quietly. It is a chance for you to serve as you have been served. Seize the opportunity before the bout of illness diminishes and they are back to serving you.
Family Coveners who live with a chronically ill person can serve their Family Coven by having weekly and daily chores dived up among all the members, including the person who is sick. When they are well, they can step up and do those chores, and when they aren’t the family coven can trade off their chores. This pre-planning allows the suffering person space to rejoin the Family Coven actively when they are able.
If you do not live close enough to lend a physical hand – then call them, text them, facebook them, tweet at them. Let them know that they are not forgotten. Their sudden illness and fatigue doesn’t diminish who they are to you. Allow that chronic or reoccurring illness is a condition of the body, not the heart and soul of a person. Your love for them shouldn’t change if they aren’t constantly bolstering you or being there for you. You could be there for them and give them a sense of worth that will carry them to wellness faster.
To Those Who Suffer from Reoccurring or Chronic Illness
This time around, I have viewed my bout of illness differently. Maybe it was working at the organic farm, with so many around me openly talking about diet and wellness and their own personal battles with both. I have found that to consistently stay well, I am going to have to change.
That is a daunting thing to realize. It can be easier to sit and complain or simply fade into the background of life. There is a certain comfort in having a body that doesn’t work right all the time. It is the excuse you can use for failure. It becomes the thing that you have to constantly overcome. It pitches your mind, heart, and soul against your body, and the incongruity becomes the place you live, unable move forward and complete the tasks the goddesses and gods have given you.
When the dysautonomia hits me hard, I spend days nauseated, vomiting, and having other intestinal issues. This time, I decided to tackle that problem first. I gave up gluten and then soy, and then had a blood test to check for any other allergies I may have been living with without knowing it.
As I have forged ahead without gluten, about a week and a half after giving it up I am no longer vomiting, experiencing nausea or having any other serious intestinal trouble. My husband priest, Tony has pointed out that I have also given up a significant amount of sugar, since most foods with gluten also have sugar in them. I am experiencing a little of what addicts face. When I am tired, I crave cakes and cookies like you wouldn’t believe. I vividly see wonderfully dressed sugary concoctions in my mind’s eye – just out of my reach like a siren calling sailors to their deaths.
To battle this, I replace this vision with one of me huddled over a toilet throwing up sugary confection in as much detail as I can master while chanting, “Gluten. Gluten. Gluten.” If I see my son eating something particularly yummy that I might have been willing to eat not so long ago, I will say to him, “Gluten.” He rolls his eyes and then I enumerate all the things that have been linked to gluten: ADHD, acne, digestive issues. I am trying to bring my mind and spirit in line with what a healthy body does. “Gluten” is bad for me. It makes me ill, and my mind would do my body some great favors by being reminded of that.
The other thing I have done is given myself a break. I was born this way. My genetics predisposed me to suffer these problems, and if I am doing anything toward the goal of wellness, including avoiding gluten, then I am succeeding. I try to not scold myself for letting daily things fall away. I become hypervigilant to stay in the moment I am in and not live too far out in the future or dwell too much on the past. I have found that what would normally be months of convalescing and fatigue have been cut short. After only four weeks I am already beginning to feel better, and several of my projects have continued to move forward. At a slower pace, perhaps, but move forward nonetheless.
If you too are suffering with chronic illness, know that you are not alone. And if you are the friend or loved one of someone who is suffering, perhaps this article will help you find ways to offer them what they need.