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, January 27, 2012


            When you are shackled by a disability and you are a soul that does not want to be disabled, invariably you crash.
Charles Addams, Cartoonist, Humpty Dumpty

            I used to see crashing as a sign of defeat. My body had won and my spirit and will are weak. These defeats would linger in my heart and mind for days and weeks sometimes causing me to just feel useless.
            Since I have started this journey I have begun to notice warnings in my life of an impending crash. I begin to have a difficulty making my mouth and the words in my brain match up. My speech is filled with dramatic pauses because my brain blanks out and I am unable to remember what I was going to say.

            This leads to amusing and frustrating guessing games with my family, “Sam could you (awkward silence)”

            “Bring you some Gatorade?” shakes my head, “No.”

            “Find the TV remote?” shakes my head, “No.”

            “Bring you a ginger ale?” shakes my head, “No.”

            “Bring you crackers?” shakes my head, “No.”

            Here I start snapping my fingers and give the universal hand sign for stop talking. I put my palm out and give my son a good mommy glare.

            “Ssssttttart the (uncomfortable silence, only now he is afraid to say anything, so it just goes on and on and on and on) the thing with the dishes in the place, you know?”
            Usually my son or husband will simply provide the words, “The dishwasher in the kitchen, no problem.”

            Occasionally the description is so outrageous we are able to laugh about it. Recently I told Lakshmi, “In that place where the wash is and the brooms and the dry is and the tool box is, you know, behind the kitchen, is a step latter folded up beside the wash thing.”
            To Lakshmi’s credit she stood still looking at me as she processed all of this and then said, “Right, the laundry room!” She chuckled uncertainly and I shrugged and chuckled with her. I was kind of funny.

            A forewarning that annoys me more than that, and affects only me is that while writing I will forget how to spell a word in my head. Now when I mean forget, I mean I will literally not even remember if it starts with a “s” or a “c.” Talk about confusing Spell Check! It is frustrating for me because I also have lost synonym associations. I will now write a piece and then go back through using Word’s thesaurus and clicking on the adjectives that I find myself repeating through a work because that is the adjective I remember. I hope this makes me a better writer. I know it makes me an irritated one, on some days.
            I also shake. I am not talking small tremors of my body’s extremities, I am talking shaking in my core so badly that I can feel my stomach muscle contracting trying to stop the shake from rattling my entire body. Most will notice my shaking hands, although I try to always be doing something with them (hold a purse, Alice’s leash, fist my hands, put them in my pockets) to try to hide had much they shake. The shaking particularly bothers my immediate family because it is an undeniable sign that I am pushing myself during the day and crashing is around the corner.

            The most obvious to my immediate family is that my about seven o’clock, if I have been pushing myself, I am in a terrible mood. Most recently this has been because I have been in a great deal of joint and back pain. This is part of the frustration of having dysautonomia. Since you are talking about an illness that affects all autonomic functions, including the immune system, dysautonomia can trigger all kinds of problems that are mere symptoms reflecting this genetic defect. Right now my doctor is looking into what problem has been trigger that is causing me so much pain.
            By seven o’clock I have advocated for my son to his school, I have made secretarial calls for my husband, I have walked Alice twice and on really good days, started and cooked or started and overseen dinner. I have also tried to reach out to my sister’s and friends on FaceBook and attempted to keep up with Tony’s extended family. Now it is seven in the evening and I am mentally, emotionally and physically exhausted. Most of my body aches and I can’t seem to muster any kind of positive or upbeat mood for myself. Clinging Dia kicks in.

            “Do you love me?”

            “Of course I do!”

            “I did good today, right? I did a lot of stuff for you and for Sam and I wrote some and…?”

            “You did a lot today! I am very proud of you”

            “Do you love me?”

            By this time Tony has gotten on the couch and started embracing me. He will rub my back and we will sit in silence while I brood.

            “Do you love me?”

            He gives me his best amused and exasperated Tony Look.

            “OK, I know you love me, could you humor me anyway?”

            “I love you. Always.”

            The problem is by the time Clingy Dia emerges; my body is too tired to fight tapes that were started when I was living with abusive parents. These tapes tell me I am never good enough. My grades are never high enough. My looks aren’t pretty enough. My entire being isn’t good enough to love. Then I get insecure. I get depressed and down and I think that despite how hard I try, it isn’t enough to justify the wonderful love of my God-like husband or to be blessed to have such a smart and amazing teenage son. The positive sunny light that has helped me through my day dims as if some cloud times itself to cover the sun so that as darkness descends I am already covered in the inky existence of uncertainty and self doubt.
            It is harder to be positive when the moon cycles into darkness and the night sky is cloudy so that the compass useful stars remain unseen. It is harder to be certain when you think about the amount of money that was spent at the doctor’s office or for new medications that could have been spent on shoes for the boy or even something really useful like that new traveling tool case Tony needs for work.

            Even though I called the Disability lawyer to check the status, even though I carefully meal planned and made a grocery list to save as much money as I could, I still feel like a financial drain. We will be doing taxes soon and shudder to think how much of our expenses last year was medical expenses alone. Thank Goddess they are tax deductible.
            Truth of the matter is, when my heart’s filled with the sun of positivity, I know that we are making it and all our needs are met by the Goddess. We budget carefully and strictly and even when we bought a new car we only increased our total output for automobile costs $25.00. We have no debt except student loans and medical expenses. We could be in far worse shape.

            But in that dense blanket of depression that so easily attacks when my body is broken, these things are difficult to remember. I suspect that this is the truth for most of us who battle a disability. We can be swamped with a feeling that takes us into the murky depths of putrid water and fills our pores with its fetid infection.
            I recently started a ritual I read about in a book called The Crone’s Book of Words by Valerie Worth. This book is a collection of rituals and spells first published in 1971 and then republished in 1994. I don’t necessarily agree or subscribe to many of the rituals in the book; however one I particularly enjoyed.  It is An Ablution, for the New Year. Worth suggests using snow (or in the South, ice) and scattering on top of earth dried in the sun. Then immerse your hands in this concoction saying:

Substance wasted, substance soiled, now be redeemed: seeing thyself in substance undefiled, forming thyself anew from this frail substance gathered and revived.[1]

            Now being the witch I am, I have no snow, so after the New Moon and leading to the full, I am reminding myself morning and night that I have rejected old patterns of behavior. I am keeping a bowl on my altar and I rinse my hands and face in it allowing it to cleanse my aura while it dries in the open air. Then at night, I wash the bowl and put in new ice to melt over night. I have found this ritual to be very calming. So I am going to try to do this in the late afternoon and see how helpful I find it at warding off the evening attacks of mental and emotional turmoil.
            Back to crashes, when all of the various indicators have added up and started coming closer and closer together, I start worrying about the crash. Today after the doctor’s visit, I came home and could not stay awake. I crawled into bed and completely crashed. I slept so hard that I know Tony said good-bye to me for the day, and I know he didn’t get any kind of acknowledgement. When I wake from these crashes, I feel emotionally and mentally renewed. (The physical just is, you learn to be happy with what you are.)

            Most importantly for me, my mind is clear and I can think and breathe and merge with Divinity and feel stronger for the hard work that led to the crash in the first place. I often find I just want to sit in the quiet and enjoy that my mind is rested. I want to savor the feeling that for this moment I know I can remember everything I need to, write anything I want to and it will flow easily no longer in the bog created by fighting a disability that only my mind can truly perceive.
            In this time and place I am beginning to acknowledge that crashes aren’t a bad thing. For those of us struggling with disability, it is our body’s way of preparing for another round of contributing to society as much as we are able. It is the reverse Humpty Dumpty. Slowly pieces of our shell fall off around us as we go about the business of doing all we can, and then our being cannot take one step more. We crash into the security of our beds. As we sleep, our shell knits back together, forces the diansaur of disease to be tamed and make us whole.

White as an eggshell,
                        White as a bone,
White as chalk,
Or milk or the moon,
Is the written word
Of the ancient Crone,
Who works by wind,
Sun, water and stone.[2]

[1] Page 13; The Crones Book of Words; Valerie Worth; Llewellyn Publications, 1994, 1971
[2] Opening Page, The Crones Book of Words; Valerie Worth; Llewellyn Publications, 1994, 1971

No comments:

Post a Comment