Infants contemplate their hands,
Exploring, testing, and just watching.
I’ve always thought “How cute!”
But nothing more.
I’ve taken hands for granted,
Failed to heed their intricate ballet
As, seemingly without effort, they move back and forth,
Both sensitive and strong, performing marvels –
From stroking a loved cheek to pounding on a table for attention --
Twisting, weaving, holding, reaching, talking, making art and love and music.
These delicately tuned extensions of our minds –
Gifts of the Creator -- miraculous design.
Reflection to Ellen:
Last night, excruciating, stabbing neuralgia in my injured hand kept me awake for 5 hours. It woke me, and I couldn’t ignore it and go back to sleep. I paced, wondering what could possibly help. I put on an ice pack, took a nerve- soothing medication, dissolved Vitamin B12 under my tongue, took extra B vitamins in general, took Tylenol, slathered skin-numbing Lidocaine cream over the whole surface of the pain. I finally, with a homeopathic remedy, got it to stop enough so I could go back to sleep at 6 am. None of the other things I’d done had made any difference at all.
Ellen, you felt similar neuralgias, all your life, generally at night, in your injured arm and hand. You would quietly get up so as not to wake your family or, later, Jeannine or, even later, me. You’d pace, and try all the same measures, and have to wait till the nerves quieted down on their own. Last night, I got to experience first hand the agony of that lifelong pain you suffered, and the helplessness of not being able to do anything to quiet it.
This injury is likewise forcing me to do what you always wished all your loved ones would do – go through life for several days using only one hand. Having only one hand to use is seriously disabling. It also requires being willing to receive help for tasks that everyone else takes for granted. After you moved into your loft, you would go down to the doorman each morning and ask him—a relative stranger -- to button your blouse and put earrings in your ears. You needed mechanical assistance with many tasks that are simple to do with two hands, but impossible with one. I have been so glad to have your one-handed tools still in the kitchen – the battery operated can opener that circles the can on its own with no manipulation required, the cutting board with tacks to pinion to the board the things being sliced, the scrubbing brush that fastens to the sink with suction cups and allows one to scrub a piece of fruit or vegetable by rubbing it back and forth across the stationary brush…
I’ve also been glad that I had those years of observing your creativity in doing things differently one-handed that others do with two hands – using gravity to position things to be fastened together, or relying on other physical grasping structures that we don’t normally think of – lips, teeth, chin, underarms, thighs, and feet. I’ve found myself imitating your adaptations – like standing a glass or dish in the sink so I can wash it inside and out, the sponge in one hand, without having to hold it in the other. Washing dishes this way is awkward and slow. I found myself today opening mail by cutting off one end of the envelope with scissors, as you always did. It actually works well as a one-handed mail-opening technique.
You always expounded on the inconvenience of having everything take twice as long. When it took me 45 minutes this morning to shower, shampoo, dry, and lotion myself, I saw first-hand how accurate this perception was. Daily tasks done this way eat seriously into the day’s available time.
Beyond the self sufficiency that one can create by using inventive methods, however, there comes inevitably the need to depend on others to help – to buckle a seat belt, clip fingernails, zip a coat, arrange flowers attractively in a vase, lift a heavy tray, open lidded containers. I did all these things for you as a matter of course when we were together. I helped you dress and undress, hang up and retrieve clothes, prepare food, tend your nails, carry gear and purchases, arrange things in closets, retrieve from the freezer items that were wedged under others, open packaging…
I’m also seeing how frustrating it is to need to defer tasks that could be done two-handed in a couple of minutes to a later time or day when I can ask someone else to do simple things for me. It’s embarrassing, as well as frustrating. It puts me in an infantile role vis a vis the helper.
I’m understanding now, from the other side, the intimate collaboration between us that these daily tasks fostered. That I routinely provided your second hand bonded us much more closely than would ever have happened under the usual circumstances of living with someone. In a way, though that often seemed an inconvenience, it was an amazing gift of love to both of us.
I’m extraordinarily fortunate that I can still use a keyboard with facility. That was your supreme frustration as a one-handed person, your inabililty to type quickly and effortlessly. Ironically, as technology evolved, the ability to type, scorned in our adolescent days as a menial task, became the key to expressing oneself and communicating easily across time and space. For decades, you fought tenaciously to encourage software developers to create a functional voice dictation system for the Mac computer that would translate speech to written words. You spent precious hours every day Beta testing frustratingly inadequate systems, and trying to communicate effectively by phone with youthful, incomprehending tech support personnel , some of whom appreciated your intelligence and insight and became your unseen friends.
Your goal – to write these insights yourself, to communicate to the world what it’s like to be disabled in this way, and the sheer grit, determination, and overwhelming effort it took to live semi-“normally” with this kind of disability. You always made things look so easy that no one understood what each small completed task had cost you, each neatly folded piece of clothing or meticulously polished shoe. You felt isolated. You knew that your daily life had required heroism and incomprehensible determination. You knew that you had achieved success on the level of an Einstein or a Beethoven, but no one realized it, because your disability was never factored in to their perceptions. You felt, accurately, that this was grossly unfair.
The software of your dreams did not come true before you died. You were never able to share with others, in writing, what you wanted to say. It was an extraordinary coincidence that I injured my hand in this way on the anniversary of your death. Dealing with the aftereffects of the injury has made this part of your message more personal and vivid for me. Living my life for the moment with but one hand to use is giving me the chance to put myself in your shoes to write these words. It’s yet another example of how I’m becoming better acquainted with you, dynamically, after your death. As I attempt, in your absence, to share with others your lessons of compassion and understanding , I’m also learning to know and love you even more than when we were still together.
Taking the time and trouble to understand those who experience the world from perspectives and abilities different from our own does this – it enlarges our capacity to experience love and compassion.
Ellen: Dead Dick
4/20/91
My right arm hangs limply
At my side
Like a dead dick.
Having sensation
But unable to move,
To act, penetrate, perpetrate.
How sad
For a woman
Who makes love
With her hand[s].
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