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.