One woman's journey and dawning realization of the slow destruction of her spirit while trapped in the jaws of disability.

Disability is at first an affliction of the body, then a state of mind and finally a shackle upon the spirit.

Lydia M N Crabtree, 2012

Wednesday, January 11, 2012

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.  


  1. This is really wonderful. Please keep sharing!

  2. Also, I feel I must share something more. I really do think that this is a common experience with many women; the sense that we can be almost like a burden to others. I for one have had similar thoughts..."Who wants to hang out with someone who is still trying to figure out who she is?" or "Who wants to see me when I am seemingly not progressing in my life?" I realize that these are feeble in comparison, but still, the mind can really take a toll on us if we let it run our lives. That's where meditation is useful; helps to let the mind wander around on its own for a bit so it doesn't get in the way during the rest of the day. In my own life, meditation has been extremely helpful. I wish you the best with it!