By Krissy PurcellWhen she is angry, she makes my days hell and my nights sleepless. She attacks me when I least expect it, especially if I’m lulled into a sense of security. She follows me everywhere, every day to the point where I truly cannot remember a time that I lived totally out of her clutches.She is cruel. She cares little for family occasions, first dates, social events and the like. She perhaps forces me to stay home, or she makes sure she is right there with me, ensuring I don’t forget her presence for a moment.She’s been a silent witness to some of the most remarkable and agonizing moments of my life.She’s always here.
The artifice of returned choice and ability so quickly reinstated my ego to its helm that I nearly missed the lesson—that self-forgetting, acceptance and allowance facilitated beneficial outcomes while my involvement netted none. The practice of prayer remains active as I navigate this disease in a new environment, and has afforded a level of grace previously unknown. The facts are unfavorable and yet, recognition of the role of God as capable of equipping my navigation of them has entirely resurfaced a landscape that otherwise would be impassable from the outset.
Crosby, who is a professor of English and Gender, Feminist, and Sexuality studies, and a scholar of the Victorian novel, describes how most accounts of trauma and recovery “answer to the dictates of the realist consensus”: once the writer’s life has been split wide open, the task of such memoirs is to stitch it back together in ways that make it seem deep, complex, self-contained, and goal-oriented. Such books tend to convey uplifting messages, turning the disabled body into an illustration of why readers should make the most of every day or overcome adversities in their own lives; through tales of hope or inspiration, they aim to give value to lives that might otherwise seem damaged beyond repair. (The titles of Christopher Reeve’s memoirs, “Still Me,” and “Nothing is Impossible,” reflect the genre’s prevailing tone.) Crosby, by contrast, resists any impulse to impart lessons, shrugging off the narrative arc that “carries the troubled subject through painful trials to livable accommodations … and all too often sounds the note triumphant.”
Chronic illness is a long and often frustrating journey. It has no clear parameters. Some days it is better, some days it is worse. Often you can’t predict when either circumstance will occur. We experience loss in different forms, jobs, life roles, financial, social, our sense of self. We experience pain both physical and emotional. We have plenty to deal with. Why should we also be made to feel we must justify our right to feel upset or overwhelmed?I, like most patients, know in many respects I am lucky. I count my blessings each day. But the days it gets too much and I’m barely holding on, a kind word or a listening ear is what is needed, not a reminder that others have it worse. Think about what you’re truly saying when you utter those words.
Scottish-born 27-year-old Jamie David had been in Australia for fewer than two months when he noticed a red bullseye rash on his leg.He had begun a PhD in science at Coffs Harbour’s Southern Cross University, and had been spending time in bushland along the New South Wales Mid North Coast.”I went to a Coffs Harbour GP who said it was most likely a redback spider bite,” he said.But over the following two months, it became clear he was suffering from something more serious.”I had high anxiety levels and just couldn’t focus on my work … I was very lethargic all the time, I had blurred vision.”
seventy-five.That’s how long I want to live: 75 years.This preference drives my daughters crazy. It drives my brothers crazy. My loving friends think I am crazy. They think that I can’t mean what I say; that I haven’t thought clearly about this, because there is so much in the world to see and do. To convince me of my errors, they enumerate the myriad people I know who are over 75 and doing quite well. They are certain that as I get closer to 75, I will push the desired age back to 80, then 85, maybe even 90.I am sure of my position. Doubtless, death is a loss. It deprives us of experiences and milestones, of time spent with our spouse and children. In short, it deprives us of all the things we value.
I am posting this one because i believe we all need to begin speaking up. Izzy was 57 kilos the day before he died. He also saw a doctor that day. He had seen several doctors over the time I knew him and this was the final one who complimented him on his weight loss, his running and his diet whilst ignored the hair falling out and the visible illness and sent him home.
The next morning he set off on his usual run and collapsed with a major heart attack and died in the Forest. The autopsy showed very advanced heart disease.
Izzy had been hospitalised for a night in 2008 with a suspected heart attack and had a mother die before the age of 50 from heart.
SHAME ON YOU, MEDICOS !
AND FROM OVERSEAS
“He’s working with a med student shadowing him today. Do you mind being seen by her first?”In the spirit of education, I said, “No, of course not.”She had long strawberry blond hair and big glasses. We talked. “What brought you here today?” she asked. “Well, I was seen in the ER three weeks ago for a blood clot in my leg and they told me I needed to follow up.” I watched her write down “Deep Vein Thrombosis.””It wasn’t a deep vein thrombosis, but they did find a blood clot, and told me to follow up with you.”She marked out “Deep Vein Thrombosis” and led me through my recent history since the Bad Fall Onto My Head on November 1st: concussion, double vision, vertigo, blood clot, and now this follow up, which also added recent chest pains to the list.”Yes, a tight band of severe pain across my chest on the least exertion — going to get a cup a tea can cause it. Feels like your lungs feel in extreme cold when you have bronchitis and you take a deep breath. Significant pain and then I have to lie down for it to resolve.”The doctor came in after a bit and explained things more thoroughly with this new audience, teaching while not listening, rather than just not listening.