Activity Has Consequences

As many may have noticed I have been very active the past week. I have written and published several blogs. I have returned and created a lot of correspondences. I took a very long car ride that lasted over six hours (thanks Lakshmi!!!). I have cooked dinners, folded clothes and cleaned up the house. I have balance the books and picked up the house nearly daily. I have even taken down Yule decorations and put out Imbolc. I have reached out and reconnected with new and old loved ones. I have managed to meditated a few times and I have even done a taro reading which I haven’t done in years. I have sent emails and dealt with my son’s school regarding some outstanding issues.

This may have caused many of you to say to yourself, “Disable? Yea, right!”

I thought I might take a quick moment to reflect on the current state of my life and share it with you.

I am physically exhausted. I am having bowel issues pretty severely that cause me to try to stay home or take serious precautions in order to go and travel. Sleeping seems to give me no rest. My back and kidneys ache and my hands are swollen. My face, neck and upper chest are flushed all the time like I am in the middle of some heavy duty work out. I have passed out over the course of forty-eight hours no less than ten different times. Out of those ten times, four of those have been significant events. This means I was completely blacked out for at least five seconds or more.

I am having dozens of partial episodes. These are episodes of severe vertigo or dizziness that I am able to prevent from escalating into a full blown episode.

I am avoiding my bedroom only because I know if I get near it I am likely to nap and therefore throw off my sleep schedule which only furthers both kinds of episodes. I am shaking so frequently that it feels like something is shaking the couch I am sitting on. It makes me feel like my core muscles are having violent spasms, which they probably are.

All of this makes me depressed because it causes my disability to be spotlighted and my condition to be unavoidable. Alice, the wonder service dog, gets nervous and  tends to follow me around. Any crashing sound or sudden cry from me brings her running and sometimes she simply comes to me and nudges me because she knows my chemicals are not right.

I try to counter act all this by drinking lots of Gatorade and despite being sure I am very hydrated, the reactions to my condition continue to be evident.  So I try to eat a series of small meals, which is recommended for my condition. Unfortunately, eating and sleeping don’t usually go together. So then I worry about taking medication to help me sleep better.

Having done all this activity, I begin to think about the other things I would like to do. Projects I want to finish (a blanket for Sarah that hasn’t been finished in YEARS, working on my BoS).  I begin to get frustrated that I am not able to do all the things I did when my disability didn’t dictate my life. And as all this swirls in my head, other things I NEED to do to help my husband or son come up and I can already look into next week and worry about those things getting done.

Being so exhausted I sleep until eleven and then am further frustrated when at four o’clock I am looking toward dinner and supposedly winding down and I simultaneously can’t wait for it to be late enough to go to bed and am irritated that I don’t have more time do the things I need and want to do.

As my annoyance raises my family’s exasperation rises in equity. Pretty soon Tony and Sam are bickering over small insignificant things and I am further irritated and begin squabbling with both of them. At this point there is no relief for anyone in the family. We all go to our different corners to lick our wounds and reset our perspective. I am not sure how the boys do this. I do it by calming down and reminding myself I am only irritated at situations that are beyond my control.

Recently I have started chanting, “Eat the elephant one bite at a time and NAME the bite.”  What I mean is that I say that I am going to take care of one issue that has been distinctively named. “Right now I am going to finish fix up the look of my blog.”  “Right now I am going to call and talk with Crystal.” “Right now I am going to write a piece about being at my physical and mental worse.”

I am beginning to encourage my boys to take this same approach.

I also spend some time trying to slow my heart which during times like this is well over a hundred beats per minute. I also take some medication to help slow my heart and relieve some of my stress. I am going to sleep tonight with the thorough understanding that tomorrow is likely to be a repeat of today and I am going to ignore whatever I can, try not intervene between a teenage boy and a grown man bonding like only the male species can.

I write all this not to illicit some kind of sympathy from you. I don’t want or need that. I write it to let you know that what you see sometimes might be a strong, healthy, confident woman who when you leave and I shut the door succumbs to the syncope that has been threatening her since you arrived. That even if it seems I am up beat on Face Book or on this blog I am trying to find a way to open my shackles through a turn of my attitude and does not necessarily reflect the physical pain I am ignoring.

…let there be beauty, strength, power, compassion, honor and humility, mirth and reverence in you.

The Charge of the Goddess, Doreen Valiente adapted by  Lydia MN Crabtree, 2007

Making It Harder Than It Has To Be

As I continue this experimentation of learning about my shackled spirit, I find myself surprised again and again. Today Tony was forced to work from home to take me to the counselor. Jake the Jeep is very ill and it is possibly terminal. Not to mention it is really better for everyone if I don’t drive when I don’t have to.

In counseling I was talking with my trusted counselor about things that seem to be changing in me and my perspective. He noted that I was angry, it seemed, at the platitudes that were empty, undirected spiritual words that seemed to unintentionally do more harm than good. I agreed with him that I was and that in writing this blog I was beginning to realize how angry I was. Trust me, this subject is an entire blog and one I am not fit to write today.

However, I told him. I am facing my guilt and shame head on. Through uplifting words from rediscovered friends and constant love from old, I am beginning to realize that despite my disability, I am still a friend worth having. When people stopped calling, writing on my Facebook wall or emailing me, I came to believe that this was a natural reaction to a defect within myself. Who wants a friend that might faint at an event? Who wants to party with someone who can’t drink? Who wants to deal with a service animal possibly being in tow? I was beginning to feel timid about writing or conversing with those whom I used to think of as friends. I was ashamed that my illness consumed me and made me unable to be the type of friend I wanted to be, the type of High Priestess I had pledged to be.

Of course these people wouldn’t want to continue to relate to me. I was too tired, too sick to even be in circle with much less put energy into. Who wants such an unequal energy exchange as that?

As I pondered all this I realized in a discussion with my sister Crystal, that despite the gulf that had developed between me and countless people, what really stung in my heart was that I loved them all. I do not blame them for not reaching out because I didn’t reach out. My pride, my shame, my guilt ruled the interactions that I was having with others NOT my love. The truth of the matter was my disability was an excuse. Because I felt I was not really contributing to society and, therefore, had nothing to contribute to others, I didn’t reach out, keep up with others, try to support their ongoing endeavors.

One of the active ways I am attacking this shame and guilt is by beginning a mini face book campaign. I have subscribed to a few more Facebook pages of people I love and have lost touch with. I am beginning to respond with more than a “like” which I feel is just a feeble attempt at saying, “I am here.” I am trying to write things, ask questions, explore options.

I understand I cannot bridge the gulf created by the malignancy of sickness alone. I can build part of a bridge by simply reasserting what has always been true. That I love so many of those I no longer am in touch with and I have missed their own light, humor and love in my life.

Another part of this is a willingness to reach out. I am determined to quit isolating myself from the community I want to be a part of. One person of immense help to me has been Stephanie Crump. Despite not knowing me all that well, she has been willing to play emergency taxi service, among other things, for me in the past and that has encouraged me that it isn’t wrong to ask others for help.

Since Jake the Jeep is not fit to drive any more than I am fit to be a driver, I reached out to three people. Of course Ms. Crump and my other sister, Sarah, but also someone I knew in passing, had spent some time with and thought might be able to help me. Tomorrow the boy needs to go to the DR and on Friday I need to take a significant trip across state. Within the space of a few minutes I had a ride to the boy’s doctor’s appointment with Ms. Crump and a ride with Lakshmi on Friday. Someone I barely knew was going to take some significant time out to take me to an important appointment.

As I was thanking both women profusely I wondered why I had made the past few years so difficult on myself and my family. Was my pride worth it? Then it struck me, how many able bodied people do the same. Ashamed to admit they may need a little help or a lift, they shy away from asking for and taking the help of others. In doing this aren’t we continuing to grow the gulf between us? How is love, affection and loyalty suppose to take hold if there are no common experiences or moments of trust shared between people? If we keep making it harder than it has to be, our future may be a very lonely one.

On a side note, I have meditated twice. It isn’t comfortable but I am trying. I hope some of you are too.  

Got Meditation? I don't.

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!