For those of us unfortunates that look like we are completely able bodied, it is difficult to explain and define what it is that makes us disabled. When I am out with Alice, the wonder service dog, I am often asked if I am training her. Obviously, I do not look like I would need a companion such as Alice. Even more amusing is when I wear dark glasses and adults tell children I am blind. I’ve learned not to respond as it can be the fore bearer of heart attacks and uncomfortable questions from children to their elders.
The fact is at 5’6’’ tall, I do not look sick. I look quite healthy. I do not appear to be grossly over or under weight. I do not, on most days, noticeably shake or have great difficulty in walking. In fact, I have been quite capable of writing the blogs the past week, seemingly without any difficulty whatsoever. I even made a majority of my Yule gifts for my nieces and a few friends by crocheting. Surely someone this capable is NOT disabled.
Then I have a day like today and I realize the problem is that only my family and a few extremely close friends see when I struggle. Calling on previous blogs, I discussed how I was going back to old BoS’s, journals and writings and reviewing them. I was looking for clues and directions when it comes to moving my spiritual life forward regardless of my physical condition. I even called myself lazy in my last post. Thinking along these lines I reached out in my Kindle driven world and downloaded two books on creating discipline. After have spent two nights this week up the entire night fighting off an allergic reaction, I am slowly moving my bed time back to normal. It was surprising this morning when I woke up before nine am. I was thrilled. I actually ate breakfast, a meal that often goes unaddressed because I sleep right through it. I took up my new book on discipline, The Skinny on Willpower, and ate my oatmeal, excited that I might have an entire day before me to get things done. Then it happened, fatigue slammed into my body. This is something I am not a stranger to, although typically it is evening that it hits most. Sitting up on my couch with bright lights on, I tried to focus on the task at hand and eventually gave in to my body’s insistent need to go back to sleep. I took my Kindle, climbed into bed and laid down to try to get further in the book, eventually giving it up and quickly falling back to sleep. I succumbed to sleep extremely irritated despite the fact that I know exactly why this happens to me.
Part of my disorder has my heart rate running around ninety-six beats per minute on a good day and over one hundred and ten beats per minute on bad days. For reference, healthy adults typically have a resting heart rate of between fifty to seventy beats per minutes. When cardiologists do heart stress tests the first level of the test is to raise the heart rate to over ninety beats per minute. I have never been able to complete a stress test because my heart rate quickly moves into the “dangerous” area regardless of how little actual walking and/or running I do. Further this disorder causes me to have tachycardic episodes during sleep. Most of the time I am unaware they are occurring, although occasionally I know they have occurred because my dreams are about running or climbing a mountain and struggling to breath. Having had sleep studies in the past I know that I have episodes that have my heart racing at 156 beats per minute and more for periods lasting from five seconds to thirty seconds. Unfortunately when I wake there is no way to know how many of these episodes, if any, I have had that night nor how severe they were, unless I have had a running dream.
Despite having dealt with this disability for over three years, the fatigue still seems to come at me from the strangest places and hits me at the most unexpected times. Today was such a day. I fell asleep with information from The Skinny on Willpower and my own disappointment at my ability running through my head. Now that I am awake, I find I have even less time to devote to the things I hope to do and I feel a pressure to pick and choose those things carefully. When my disability lawyer asked me to describe what it would take for me to be able to work full time, I replied, “Oh I would be willing to work full time if I found work that wouldn’t mind if I had to skip two or three days in a row; would permit me to work, at most two to three hours a day; and would completely understand if I said I have had a really bad day.” On really bad days, the fatigue itself is enough to muddle my mind completely often rendering speech itself a challenge. On these days in particular I am likely to shun even FaceBook and deal only with my husband and son, who have learned how to work around my temporary defect and know what I need, want or have to do to get beyond my condition.
This is I think where I lost a lot of the people whom I used to consider friends, some even close as family. They get up daily; go to work, school and some both, even if they feel a little ill. Here I am, appearing perfectly healthy and having bouts of complete clarity and ability when suddenly it falls off and I become unreliable, unpredictable. A lot of my shame flows from the knowledge that many people I love whom I believed love me simply find me flighty, undependable and unwilling to change the two. I am now disabled in their mind. My will is weak and I am flawed. I even named this myself in my last post. I called myself “lazy.” As I napped this morning, I dreamt that I was in a class where the professor was teaching the information from The Skinny on Will Power. In the book the author suggests that you make a contract with yourself that is inviolate. When I was awake I thought that this was something I could do, after all I took my pledge to my husband as inviolate and we are married despite rough times and problems. My sleep self tried to ask the enthusiastic professor, who bore a disturbing resemblance to my philosophy professor, what happens if your body keeps you from doing? My dream self showed me plenty of times in the past years when I wanted something to be inviolate. Whether it was a trip to give a third degree to a soon to be High Priest or wanting desperately to successfully finish edits on my book, and my body violated these attempts through fatigue or heaving over a toilet instead of sitting in front of my computer.
It occurred to my dream self that in my condition wanting something to be unbreakable and making it seemed to be diametric opposites. I have already heard and read a lot about pushing through, carrying on and overcoming. I have even attempted to keep a strict schedule of prayer in order to bring discipline into my life. I have tried numerous tricks and tips to try to break this inability I have that leads me to believe I have no will power. Then my dream professor began to repeat part of the book that when I read it my entire being had a visceral reaction to. The Skinny on Will Power quotes another book The Handbook of Self-Regulation: Research, Theory and Applications (Guilford Press, 2004), and my dream philosophy professor, who usually was quite the mumbler, clearly reminded me:
Other work is needed to explore how the self-regulatory resource may be replenished when it is temporarily depleted. Although systematic studies are lacking, circumstantial evidence indicates that sleep and other forms of rest help restore it….One study found that guided meditation helped to offset the impact of ego depletion and to restore (one’s reserve of self-regulation).
Ah yes, the bane of my spiritual existence. I had one High Priest tell me that he was well aware he would be healthier and happier if he meditated every day. I asked him why he didn’t and he never responded to me. On the flip side, when I was well and traveling in front of my book’s release, I was honored to spend time with T. Thorn Coyle. Every morning, I watched her take meditating before entering the craziness of festival. Occasionally, I watched her write down musings in her journal. To this day I have never met a more center and grounded pagan author. She was a true joy to be around and seem to consistently exude Divinity to any in her presence.
Oddly enough, I recently signed up for a teleclass on meditation and actualization presented by Munishwarji Walking Tall. Of course, by the time the teleclass was to be presented I was in that not quite capable of making complete sentences stage of my day. So today I download the class and have I looked at it yet? Of course not! Now I have to ask myself why? I know I am not alone in this. I know LOTS of pagans, Christians, Wiccans, witches, new agers and every other type of varied path you could imagine. Yet it seems that only those who I know to be deeply spiritual, Priests, Buddhist monks, Munishwarji, T. Thorn Coyle, are able to consistently practice meditation. I have asked this question before and was told I am an active meditator. I think this is a polite way to say that I am too mentally hyper to sit still long enough to meditate. Unfortunately, to further this idea, the most spiritually enlightened and calm I ever was happened when I spent my time in deep study and drawing of Sacred Geometry, not the study of astrology signs and stars and how they related, the study of geometry as a scared path that enlightens the Divine. After Christopher Penczak released Ascension Magick I asked him why such an in depth study of Sacred Geometry seemed to have heightened my psychic abilities. “I suppose by doing all those drawings you did tap into a piece of the Divine that you brought into your essence,” he said (my paraphrase). I was a bit dumbfounded, mostly because the book I used, Sacred Geometry: Philosophy and Practice, basically had said the same thing. I was equally dumbfounded at my lack of an ability to believe my own experience as genuine without someone pointing out the obvious to me.
This doesn’t, however, reveal why I resist the idea of consistent meditation. And just for the record, I have seriously studied meditation. It never helped my consistency but I have read Thich Nhat Hanh and many others on the art and practice of meditation. At this point, I would normally launch into some divinely inspired solution I could share with you. I got nothin’.
Do you – Got Meditation? Then by all means – share!
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