machado: how hope lives on despite a rodent-filled shelter, physical pain and a few cans of rice and beans

hope is such an interesting and special emotion.

according to some experts, hope is something everyone has — it’s considered an inherent part of being human, apparently, and helps us define what we want our life story to be.

what’s so neat about hope is that it’s almost always playing in the background of our lives. even when there is no hope — your team is losing 5-0 in the last round; a diagnosis of terminal cancer; or your partner leaves you for someone else — there’s still hope. maybe your star player will come in clutch; maybe that last drug will be the one that finally works; maybe you have yet to meet your real true love.

even when things turn out badly, incredibly, we still find ways to hope — those reasons to believe: you tell yourself that the next game will be better; that at least death will end the pain; that you are strong, resilient and are better off alone.

i met ‘d’ last week when she sent a note to say thanks for a story that explored how covid-19 was negatively affecting people with disabilities. she said she was someone who used a wheelchair, and that the pandemic had impacted her life to the extent that she is surviving on cans of rice and beans because her health issues make it too risky to go out.

we traded many emails back and forth for a bunch of days. i didn’t know her real name, or where she lived, but i learned that when she was a teenager, her father was abusive and when her mom told him to stop, he met ‘d’ on the driveway with a garbage bag full of her clothes and told her never to come back. she alluded to living on the street for a time — “hoping to survive the night” — and then in shelters, after an illness forced her to drop out of college and lose access to financial assistance. these shelters often had rodents, toxic mold and sexual predators.

she explained that when she began having troubles with mobility, she visited various health clinics trying to get help, only to have clinicians not take her seriously, barely treating her like a human because of where she lived. she received a long list of possible diagnoses to explain debilitating headaches, muscle weakness in her legs and incontinence, including multiple sclerosis and a heart condition. but these suspicions were never checked out, rather, her file was slammed shut with the overall opinion being that her symptoms were the result of severe mental health issues.

‘i feel frustrated,’ she wrote, explaining that she had stopped going out to see doctors because she wasn’t able to control her bowels.  ‘i went twenty years trying to convince doctors there was something wrong with me, and they mocked me, dismissed me, and were cruel.”

fast forward to the start of the pandemic, and ‘d’ said she had what was a suspected heart attack, landed in the hospital, and was subsequently diagnosed with an aneurysm in her brain – which she describes as a “time bomb in her head.” she was also diagnosed with chiari malformation, a condition in which brain tissue extends into the spinal canal, causing symptoms like headaches, problems with balance and numbness in hands and feet.

when i offered to help, she said the only thing to be done is to “tell the truth about the biased treatment of women and minorities and the mistreatment of the elderly and those with disabilities.”

like many others living lives filled with impossible challenges, ‘d’ is tired. i could tell by the way her jokes and good humour seemed to get quieter the more we chatted. but what struck me most was that despite all that she was facing — including a kitchen cupboard with dwindling rice and beans — she still had hope. she was funny and clever, and she believed that telling her story would help others going through similar challenges see that they aren’t alone.

hope guides us and brings meaning to our lives, writes julie neraas, in her book, apprenticed to hope: a sourcebook for difficult times. an ordained minister, and associate professor at minnesota’s hamline university, neraas says there are seven types of hope, including inborn hope, which is the kind of endless hope that children have; borrowed hope, which is when someone else has hope for you that you don’t recognize; and bargainer’s hope, when, in response to something awful happening, you are compelled to promise to do something in order to make everything okay (for example, “if my father gets better, i will visit him every weekend”). the seventh kind of hope is mature hope — when someone chooses to take the long view. they aren’t focused on what the outcome will be, instead, they believe in meaning, and that things are worthwhile doing, no matter what the end result is.

‘d’s hope — similar to the kind i have seen in so many people with cancer, and others who have suffered trauma — is mature, something shaped by the road she has travelled. by getting beaten down and battered by circumstances and rotten luck, you come to accept the randomness of it all, to some extent, and take the long view. whether the outcome is good or bad — it doesn’t matter. instead, you set your gaze more on the day-to-day trenches you need to wade through to get to the end, whatever that end looks like.

psychologists say that hope helps to sustain us. it guides us in managing stress and anxiety, and increases our ability to cope with adversity. it must… otherwise, how is it possible that ‘d’ is still here, after everything, laughing and making jokes?

“i’m dying,” she wrote in her last email, explaining that she didn’t have much time and wouldn’t be in touch again. wishing me “debauchery and shenanigans,” she signed off for the last time.

it’s not often you acquire and lose a friend in just a matter of days.

‘d,’ if you are reading this, we are telling your story. thank you. rest easy.