Losing touch finding intimacy by Elizabeth Jameson and Catherine Monahon
The Sunday Times Sunday, September 23, 2018
One of my oldest friends is here to visit. For as long as we've known each other, we've been in sync, weaving in and out of each other's lives and reaching milestones together.
We married our partners at around the same time, went through law school and medical school at the same time, got pregnant with our sons in unison and lived as neighbours for years. Although we have visited each other frequently, time has slowly got away from us. I haven't seen her in more than a year.
She gingerly lies down on the sofa while I sit nearby. She isn't looking good. Thinner than I've ever seen her, weak and in pain.
"How are you?" I ask.
"Well, I have cancer," she says plainly. She changes the subject, not feeling the need to linger on her recent prognosis or to specify that it is terminal. All I want to do is hold her hand, rub her shoulders and tell her how much she means to me with a firm, loving touch. I imagine stroking her hair or giving her a pillow to feel more comfortable, but I cannot do anything.
When I lost the use of my hands, I lost my love language. I have multiple sclerosis, which has resulted in the loss of the use of my limbs. My disease progresses so slowly that I am caught by surprise when I can no longer do something. Little did I know I have been losing my range of motion by a fraction of a centimetre every day. Nerve by nerve, I lost the use of my legs, arms, wrists, hands, pointer finger and thumb.
I can't tell you when exactly I became a quadriplegic, only that I know I am now a part of the club. My paralysis limits me down to my fingertips. I can't operate my wheelchair, can't hold a coffee cup, let alone someone's hand - I can't actively touch in anyway.
It feels like there is a thick pane of glass separating me from the outside world, and because of my physical disability, I begin to believe that I am powerless to break through.
There are times when I feel connected to others, but in most situations, I become passive. I work hard to forget the joy of touching. I am a positive person, I tell myself, I can deal with this. I set up camp at the base of my Mount Everest and try not to glance up at what I am missing.
But I feel the loss of touch as if it were a limb that has been severed from my body, an invisible, open wound I painstakingly cover up each day. I am hyper aware of the moments when words are not enough. When touching someone's hand is the only way I can truly communicate my feelings.
I resign myself to the idea that I will never experience consensual, nourishing, intimate exchanges of touch in everyday life.
It is in this state of numbed resignation that an unexpected crack forms in the thick glass that has been separating me from "normal" people: A ray of light that reveals a world of intimacy I have been overlooking.
TIME TO CONNECT
I am visiting another friend at a coffee shop. My voice is weak and hard to hear in crowded spaces, so I use a voice amplifier. The amplifier has a microphone and a headset that make me look like an aerobics instructor who happens to be teaching in a wheelchair. I've got my headset in place, but when my friend leans in to hear me, it's no use. My voice is too faint. I motion with my head towards the dial on the device, which can be turned up to make my voice louder.
He tentatively discovers the dial, locking eyes with me to check the loudness of my voice. As I keep talking, he turns the dial up, then up and up some more until, yes, there, he can hear me. We nod and smile in unison, return to our conversation.
As he settles back into his chair, I feel light-headed. By increasing the volume of my voice, he had turned up the very essence of "me". The fact that he cared so much to hear me. That he took the time to learn how to connect with me.
I had rediscovered intimacy, without touch.
My mind continued to reel long after we said our goodbyes. Maybe I can experience intimacy, I thought. It's just that the language of it all has just changed. I had to redefine intimacy for myself. What is it, without touch? The freedom to express myself The joy of being recognised, seen, accepted, equal. Letting my guard down, no longer burdened by society's version of me, by my version of me. The feeling when the stigmas of disability and illness are lifted. I eyed my version of Mount Everest, thinking that maybe there was a way for me to fully rejoin the living.
After that day in the coffee shop, intimate moments emerged from the fabric of my everyday life. I began to notice how friends, loved ones and total strangers could make me feel visible and whole in completely mundane ways. Appreciating them took my breath away: that someone driving my wheelchair is making love to me, that someone kneeling to my eye level is giving me a gentle caress, that someone feeding me is a joint experience of pleasure and tenderness.
Within the mundane there are beautiful surprises, too. On a busy day, before work, my husband pauses his morning routine to make me a poached egg, his speciality. Something he wants to make for me - I didn't ask.
A friend tries to feed me a cookie. He does it "wrong" at first, but the process of figuring out the best way is like an intricate dance. Over the holidays, a family member puts on Handel's Messiah, music that I love and everyone else in the family finds annoying. They usually refuse to put it on, but this morning they play it just for me, blasting it so that I can hear the music through my bedroom wall.
I savoured these moments, and as I did I was propelled and empowered by them. I realised I could play an active role - I could give as well as receive.
So I took my intimacy into my own hands, even though I am still grieving what I cannot do. I leave base camp behind and begin my slow, laboured ascent; the fluid, open concept of intimacy spurs me onward.
I have always loved food. I muster the courage to ask someone to join me for a luxurious, two-hour pastry-eating session. We take the time to savour every crumb of a single pastry, eating at the same pace together, and I feel honoured, loved.
PART OF A TRIBE
I start seeing myself in others: I am a part of a tribe. Wheelchair users, people with multiple sclerosis, the elderly with canes and walkers, people struggling with aphasia or spinal cord injury. The list goes on and on. We are everywhere. I lock eyes with a 90-year-old man in a crowded elevator. He tips his hat to me with a warm smile. I see a woman with a mobility aid in the street and we grin at each other, comrades. Neighbours. Strangers. Visible, invisible.
I now know intimacy can be everywhere. Moments I've noticed, received, created. You and I are sharing an intimate moment right now - because if you've got this far without turning away, you are a part of that exclusive tribe of people who truly see me.
But eventually, my quest for intimacy brings me back to the beginning. To touch.
My good friend is back to visit. We are trying to see each other more often - with less time left, it's only natural. She lies on the sofa, and I verbalise all that I kept inside last time - how badly I want to stroke her hair, squeeze her hand, sit next to her. She smiles appreciatively, but moves the conversation along, not one to linger in the spotlight. She directs the conversation back to me.
We talk a bit more, and emboldened by my confession, I ask her if she would take my hand, if it isn't too painful to move. Slowly, she sits up, and my caregiver rolls my chair as close to her as possible. She extends her hand, resting it in mine. We look at each other and breathe.
NYTI M ES
Elizabeth Jameson is an artist, writer and former civil rights lawyer living with multiple sclerosis. Catherine Monahon is a mixed-media artist and writer. She collaborates with Ms Jameson on writing projects.
[Elizabeth Jameson redefines intimacy and finds that verbalizing it makes her feels it. She is feeling Agape again. Savouring a two hours pastry eating session is love in action. The friend is patient with her and thus she feels loved---For Love is patience.]