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

Friday, October 19, 2012

Revelations – Part 1 of ?

Significant things have been happening rapidly in my life. One very significant issue is not fit for common consumption and the other has revealed to me a couple of things that I was unaware of. I hope those who have recently been offended by this blog, give me a chance and read this through.

In January, 2009, I realized I was not likely going to be able to continue to teach, write or present to a wide audience anymore. Not only was I sick physically – the emotional toil of the life I had lead combined with being physically ill with a disorder that, at the time had no real definition, was simply too much. I applied for disability knowing that I would not be able to contribute to the family coffers, hoping that my years of wellness and contribution would give my family some financial relief.

This week after years of research, doctor’s appointments, false leads and general confusion, I sat down in Judge Dole’s Social Security Administration Court to determine if I was in deed disabled. As many who have attempted to get disability know, this process can be arduous and taxing. My lawyer, Joseph Seagraves, did a fabulous job after I was initially turned down for disability in 2009. I knew given my complicated medical history and the complexities of the system, I needed someone who had been there and done that to lead me through the process.

Before the hearing Joe warned Tony and I that I would likely have to wait thirty to sixty days for hearing results, that I would be the person who testified the most and that a vocational expert would be on hand to testify. He was concerned because two vocational experts had said that I qualified for positions like “pen and pencil manufacturing” (putting pens and pencils together) among other bizarre things I didn’t even know were job descriptions in my area. We talked about my confusion and brain issues and the fatigue that has come to dominate my life not to mention the syncope that strikes about five to ten times per week and has extensive recovery time. These were the issues we could easily explain and are outside the other issues I suffer from like PTSD (Post Traumatic Stress Disorder), anxiety, immune deficiency and IBS (Irritable Bowel Syndrome).

As Judge Dole began to ask me questions a sudden clarity about my illness occurred. Someone outside of my life was asking me questions about my health, how it has impacted my life, what changes had happened because of my illness. Once I literally stopped during an answer to ask what the question was because my ability to concentrate has become so compromised that, especially under stress, I easily get lost in my own thought process.

Judge Dole then asked the Vocational Specialist if he thought I could miss one to two days per week and still be employable at any vocation. The Specialist said, “Absolutely not.”

“Well, I am convinced,” Judge Dole said, “It is obvious that you are and have been significantly disabled and my office will ensure an expedition of your claims. I am sorry for your struggle and I hope this helps.”

As my lawyer quickly packed up to leave, Tony came to where my seat had been and Alice I went through the ritual of standing up (which is a ritual), a few things occurred to me and relationships all around me came in to stark focus.

I have not been forsaken.

No one likes to admit that times are lean when times are lean for everyone. That stress is something we all face and is a common denominator for us. Tony often says, his father told him, “There is never enough money, so don’t think there ever will be.” His father would say even millions worry about money, maybe not in the same way, but they worry none the less.

Given that, my faith has been shaken on a few counts. Watching my husband work and work to provide for a disabled wife and her son without being able to contribute something has been agonizing. As the liability you feel constantly guilty that you can’t help. Every dollar you spend on something for yourself (the huge doctor co pays and deductibles, medication, an e-book, makeup, underwear), you do with the knowledge that someone in your family will go without something because of you. Not just your needs but your inability to provide something ANYTHING to the cause. I found myself feeling I no longer had a right to give my own son permission to have an extra $20.00 for dinner and movie with his friends because I brought nothing in. The money wasn’t mine. This issue alone, I think could be a separate blog.

[I would point out that Tony NEVER made me feel these things or made me feel I was a liability, EVER! This is the feelings that my situation created in me.]

And it isn’t just the money. I felt a constant judgment around me, probably in large created by myself. Mostly though, I knew that my withdrawal from community had done significant damage, unintentionally, to many. For the first couple of years, I wasn’t even sure what was going on. I was suffering blows to my career (losing my Llewellyn Contract, being unable to travel, and being unable to mentor as I wanted to). As my health faded I began to see the problems I had in relating to others. How boundaries and an unintentional fostering of High Priestess Syndrome had created poor relationships that were not designed to withstand such a swift crushing blow as the sudden loss of my health. The woman I had come to see as my mother dies a violent horrible death and my condition keeps me from her bedside and the side of my sister whom I had come to love like very few others. All these things weighed on me, adding guilt and overwhelming pain, not only for myself but for those around me that I saw falling away because of my past, my inability to communicate in the present and my growing anger at Divinity for the situation I was in. I had stood at the steppe right before the summit and been struck down by an avalanche of emotions I could hardly process while being ill.

I began to feel like everywhere I turned I was being invalidated. Doctors had no clear answers. My own body was turning against me. Every conversation felt like I needed to justify my illness and condition. Very probably something that came from within me and my own insecurities and that can be so very difficult to see.

Judge Dole delivered this message to me.

You have not been forsaken. You are believed. You are supported. The Goddess and God are with you.

I spent the rest of that day crying tears to soothe a bone deep ache I hadn’t realized I was having. I left feeling I had an opportunity to just find a way to deal with this new life I was in. And I saw clearly that my anger at Divinity had been wrongly projected at people the closest to me. In words on this very blog, by phone, in person – my crushing and unacknowledged anger at the Goddess and God leaked from my pores just as surely as the smell of illness follows me and alerts Alice that she needs to prompt me to eat or drink, rest or sit.

As this revelation hit me, I understood that those very closest to me, specifically my sister, Crystal Blanton and my former student Michael Stanley took a huge brunt of this uncontrolled rage. I saw in them all that I could not do or be. I saw in them the horrible toll my condition was having on their lives. I watched with a mixture of pride and bitterness as they rose up and meet challenges sowing seeds of love and compassion and leadership while I struggle to figure out what was happening to my body.  I saw in them all that I wished I could have done differently for them, with them, to them. And instead of facing my own mirror, I took my rage and unleashed in public, in private and completely irrationally. Further I knew that behind them were more people standing there feeling all the pain and confusion they were and I found myself wanting..unable to and unsure how…to help those deal with things I couldn’t even deal with.

 So I publically ask for Crystal, Michael, Angie and Scott M., Carly, Patrick and Danielle M., Tina V., Jenna Rose G. and Jillian S. forgiveness and urge them to remember I am human and always have been. Though my humanity does not forgive my failures to you, my misdirected rage or the rampant damage my illness inadvertently caused you.

I understand now what Crystal has been trying to say, “You do not have to intend harm for harm to be caused. You do not have to be blamed for harm in order to have a responsibility to deal with the harm that has been done.”

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