Recently at a party, I met a man in his late 70s who told me his adult daughter was undergoing treatment for advanced stage brain cancer. He said, as the patriarch of the family, he was holding his entire family together.
He also said he was holding his daughter's hope.
She'd grown weary of all the various treatments and was very depressed. Even her own daughters didn't seem to hold her focus. Her dad sighed, "I'm exhausted from trying to be so positive. I'm constantly fighting against the hopelessness."
When I asked him what kept him going, he started to cry. "No one ever asks me that."
At the same party, I also met a young couple. As parents of an infant, this was a rare night out for them. After chatting about one thing or another, they told me their son, their first child, had cystic fibrosis. I listened as they shared how much they loved him. The mom said his symptoms were minimal. I asked where he'd been getting his medical care. They said downstate, at a children's hospital.
The dad paused, "I doubt we're ever going back there."
Before I could say anything, he added, "We've found the care abusive ... not helpful. The whole approach seems to be based upon hopelessness. They offer few positive actions we can take. We can't parent that way. They seem to want to take away our hope. We're going to let our son show us what he needs. We'll find another facility."
The next day, I saw my mother-in-law, Margaret, who is 90 years old. She was married to the same man for more than 65 years until his death. She's a mother, grandmother and great-grandmother. She's recently been through some health challenges and change in her living environment.
I asked her about hope as an elderly person.
"Hope never ends," she said. "It's not just for younger people. Many people may think that my life is over -- I've lived my best days. But each day, I get out of bed with a sense of hope. I want to see what happens next in my life. I especially want to see how my loved ones' lives unfold. I'm interested in what happens in the world. At 90, I have healed, tried again, gotten better and regained some of my independence. I've seen doctors lose hope in what they can do for their patients. Often, the patient then loses hope. I've also experienced really hopeful care. Equally, false hope isn't helpful. It's not hope."
As a mental health professional, I've often held others' hope when they've felt or thought they were hopeless. I've seen people use hope as a placebo and get better. I've watched people struggle with fear, ego and panic ... terrified that to hope meant vulnerability and defeat. Every family of origin has beliefs about hope and how it can and cannot help people. The sources of hope can vary: other people, themselves, nature, faith, education, politics, the arts and science.
In many ways, the best part of hope is that it can energize. Solutions can be found with hope. Hope battles passivity, empowers and inspires. Hope laughs and lets you know that you're not alone. With hope, you believe and trust that you can overcome the insurmountable. You see others do it. Change is possible. You're motivated. Hope allows a person to live their values, no matter what, with greater dignity.
I've known many people without hope. I've seen the places where they live and what hopelessness does to everyone around them. I've seen how hopelessness can suck the very life out of a room.
I've also seen people waste away their lives, wishing, waiting, living "if only." People fall to the seduction that any dream is possible, every ending a fairy tale. Some people hope for the wrong things. They have too much desire, expecting wishes to be fulfilled without effort or desperately trying to control the seeming randomness in life.
Early in my disability, one of my kid sisters asked me what I'd wish for if I were on the TV show "Fantasy Island." I said I'd like to become a journalist. She looked at me in horror. "Why didn't you say you wanted to walk again?" She had a point. Yet I knew the spontaneous answer I had given was the truth. "I now know that I'm going to be OK not walking. I want other things."
I also remember not continuously praying that I would walk again. Many people told me to pray for this, but it never really seemed right to me. Instead, I hoped that my paralysis wouldn't break my heart. Even at the age of 18, I knew that if my heart closed, I would live a very small life. With an open heart, perhaps more than I imagined, could happen. I was right.
Susan Odgers, a resident of Traverse City for the past 22 years, has used a wheelchair for 33 years. She is a faculty member at Northwestern Michigan College and Grand Valley State University. She can be reached via the Record-Eagle. For more Adapted in TC columns, log on to record-eagle.com/susanodgers.
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