Choosing ALS: The Key to Your Future is in Your Past.

June 2008

My eyes were transfixed on the light-blue argon gas cylinder. The ease of opening the valve and letting the inert gas lull me into unconsciousness, followed by a peaceful and quick death beckoned me. My mind raced through the scrambled pros and cons of such a permanent decision. There would be no way back, no second chances, no refunds.

What would a few more years of being alive accomplish? My heart was spent. My body was becoming weaker every month, and soon I wouldn’t be able to walk. My hands and arms were already close to useless, my speech was becoming unintelligible, choking on food and drink was also becoming a regular issue; and I was tired. When I say tired, I don’t mean the regular kind one can sleep off or recover from with rest. I mean utter physical and emotional exhaustion, and the future offered no solace. I had lost my beloved career, my partner, friends, my physical ability to enjoy simple pleasures and soon enough, my independence, privacy and life; all because of this vampiric disease.

Why go on when there was nothing to look forward to except more loss and pain? Why should I? My withered right hand reached for the valve on the side of the gauge and using my weight, turned it open.

My face feels like it’s draining into my guts.

The blue leather attachments of my bodywork table gather dust to my right. A table that supported hundreds of clients’ bodies is sitting in the next room like a museum piece. I once held those bodies in my hands and their words in my heart. My craft was called Structural Integration; an American based form of manual therapy focusing on bodywork, movement, and dialogue to facilitate a client’s journey to embody their life.

It wasn’t massaging to relieve pain (that happened as a consequence), and it wasn’t physiotherapy to heal injuries (often a consequence too), nor psychotherapy. Rather, its purpose was to free people from physical and psychological barriers; so to speak. My passion and inspiration had been here, in this profession.

My heartbeat thumps in my chest.

Now, the books were gone and the charts and the clients. Just me; and a body unable to hold a cup with one hand, nor stand without the support of a frame.

My mouth is dry, my tongue sticky and I suddenly want to piss.

What purpose do I fulfil if I can’t find, create or derive meaning? The hiss grew louder as the gas escaped the opened valve and I knew it wouldn’t take long before I’d pass out; permanently.

I’m feeling light-headed and a bit silly; This is so easy.

What’s my choice?

March 2006

Jenelle is laying on her back, her knees are bent and her feet flat on the bed. Her eyes are closed and her breathing rhythmical. In and out; in and out. As her abdomen raises and lowers with her breath, I follow with my fingers, maintaining pressure with her inhale and going deeper with her exhale. My finger pads feel the resistance in the flesh: her nervous system’s response to my intrusion. In and out, deeper. In and out, deeper still. In and out.

“Oh,” she sighs.

“Nearly there,” I say. In another breath, my thumbs slide under her ribcage. I ask Jenelle to tilt her pelvis back and forth. As she tilts slowly, I meet the muscles’ resistance and lean a little further on relaxation to give her nervous system a chance to adapt. Too much pressure, however, and the body revolts causing tension and pain; something that’s counterproductive and ultimately futile.

“Okay, that’s good. Ah, there you go, feel that?”

“Uh huh,” her eyes open wide as air rushes into her rib cage. My thumbs slide incrementally through the abdominal fascia along the underside of her lowest left rib.

As I start to reach her side, I move my left finger pads to the bottom of her sternum and stretch the skin and underlying tissue upwards.

“So you know this session is about two things right?” I don’t take my eyes off her moving diaphragm.

“Yep, I did the reading,” she says. “Increasing the breath; that’s the physical work, and inspiration?”

“Yeah, pretty much. The body is built for movement and what these sessions do is release the fascial restrictions from your muscles so you can move better; easier.” My left fingers keep sliding with enough resistance up her sternum to engage the connective tissue.

“Inspiration means to bring in air physically, and metaphorically to bring in spirit,” my hands pause and move with her rib cage. “As you breathe in, your lungs fill with the oxygen needed for energy and to stay alive,” Jenelle takes in a large breath and out again with purpose. “Likewise, when we feel inspired, we feel energised, or full of spirit, as the ancients used to say. That too, can keep us alive, or at least give our life meaning.” I take my hands off and watch her chest’s breathing scope. The left side is already moving more than the right.

“My right side feels like it’s glued down compared to the left,” she glances at me with a surprised expression. “It’s so much easier on the left,” her skin starts to flush with the extra oxygen.

“Pretty good, huh?” I start to walk around to the other side of the massage table and step on the foot pedal to electronically raise the table’s height a few inches. “So…the next logical question is: what inspires you? What gets you up in the morning? What’s your purpose?”

Jenelle stops breathing for a few seconds.

“Wow, it wasn’t meant to be a loaded question,” I say as my fingers pick a smear of balm from the small jar by her feet. Jenelle’s brow furrows slightly as her eyes search for a correct answer on the ceiling. I place the left hand on her upper chest and my right fingers on her trapezius, and I wait. Often, more is said in the silence than what is spoken.

“I guess, my kids?” she looks at me for confirmation. “It should be my kids, right?”

“I don’t know. Should it?”

“I’d do anything for my kids. I work hard for my kids. I live for my kids,” Jenelle looks away at the opposite wall and then back at the ceiling.

“Your kids huh? They’re what inspires you?” my hands keep sliding across her muscles as she breathes. “Your breathing has changed. What’s up with that?”

“I don’t know,” her blue eyes moisten and redden slightly. “I think I’m full of shit. I’m in a rut aren’t I?”

“A rut?”

“A fucking rut,” she said. “I’ve been using my kids as an excuse—like a handicap,” I’d heard the same story from different clients over the years. Losing sight of our passion through a fog of events that lead to a landscape we don’t recognise. Sometimes it’s duty; sometimes it’s compromise; sometimes it’s plain bad luck.

“I used to want to be a writer.”

“You wanted to be a writer?”

“Yeah. Something I did a lot of growing up. Thought it’d be something I’d be doing professionally,” she says. “You don’t need much, and you can do it anywhere.”

“So, what’s stopping you?”

“Nothing, I suppose. Life happened and I made choices,” Jenelle’s breathing eases and her chest resumes a soft rhythm of expansion and contraction.

“Life. Happened. You think you could choose to give your life meaning?”

“If my eagerness to find my old notebooks is anything to go by, then yeah,” her demeanour had palpably changed from when she first walked into my clinic. Then, she was a middle-aged woman who needed some manual therapy to ease her aches and pains. A tentative decision she made after a mutual client passed her my card and told her I’d changed his life. A nice sentiment, but the truth is the work does it. I ask questions, and they find answers. I release connective tissue restrictions, and their bodies feel unshackled; the rest happens organically. Now, she was a 44-year-old woman with a “handicap”– but with a choice.

“What about you?” she asked turning her face towards me. “What gets you up in the morning?”

“My Akita’s tongue on my face and, this,” I strain a smile. “This work is my passion. Took me many years and many jobs to find it.” I felt my eyes reddening. “I live for this work. It consumes me and gives my life meaning.” My right hand was cramping again, and exhaustion crept through me like a noxious weed.

My life, however, was heading in the opposite direction. My inspiration had an expiration date cursed upon it six months prior via a neurologist’s diagnosis of Motor Neuron Disease (MND). He gave me 2 – 5 years and a synopsis of my future deterioration that is the stuff of nightmares. What does one do, where does one go, when the choice to go or do, will soon no longer exist?

May 2017

“I’m going to the gym for a workout,” Jodi says entering the room. She’s my live-in carer and does all the stuff I can’t physically do, and I take care of the rest. “I need to move; get a sweat going. Will you be alright for an hour?”

I nod in agreement.

“What you working on today?” she says while slipping on her Asics sneakers. “Your Writing Degree?”

“Yeah,” I mumble. My speech muscles and tongue have atrophied to the point where I sound drunk or retarded, but Jodi is used to it and understands most of what I say.

“Alright. You’ve been to the toilet, you should be alright,” Jodi’s performing a mental checklist aloud. “Okay, back in an hour. Text if you need anything.”

I hear her grab the keys from the kitchen bench, opening the door and security screen, closing the door and locking the security screen. I’m alone now. There are a few seconds of silence and then the muffled thump of a car door closing. A few seconds later, I see her car speed past through my window, beyond the ash-grey eucalyptus leaves dangling like ribbons. Underneath the leaves, my favourite birds–Willie Wagtails (Rhipidura leucophrys)–hop and spin on the grass, moving in a manner descriptive of their namesake; which begs the question: what would their name be if they couldn’t wag their tails? What am I if I can’t be Jorge? A nobody? No-Body; ironic. That’s what I would have been if I hadn’t turned the Argon off. It was a trial run; a way to know that I had a way out if necessary.

The power of choice is a great motivator. The choice to leave, made me feel at peace that I could stay. The choices I’ve made since have replaced those robbed by MND. Choices are woven from a tapestry of memories, people and experience. Choice is imperative to my well-being. Choice moves me towards the inspirational and, therefore, the meaningful.

Life happened and gave me a handicap–figuratively and literally. Giving up because life took my favourite thing away, is akin to a child throwing a tantrum if you take their toy away. Sure, it’s upsetting, unsettling and cruel, but as the ancient Greek Stoics used to say: to be alive is to suffer; expect it and don’t be surprised, it’s just a matter of time. No one gets out alive.

So fate punched me in the gut, took my toy away and left me winded. Keep it, I’ve chosen another.