I finished this book today. It was the first of the memoirs I found about families touched by spina bifida. Diane was born in the 1940’s before they had any options to help babies born with the condition. Her family was told to “take her home to die.” Not only did she not die, she learned to live with the disability in such a way that she would now be considered high-functioning except for lingering difficulties with urination.
In spite of the bleak prognosis, or perhaps because of it, she was able to live a life more fully than most individuals who live with mobility disabilities. She built a career to be proud of, then she received the diagnosis of breast cancer. It made her accept her body and its limitations in a way she had never done before. She didn’t tell people about her disability, because she had internalized it as a source of shame that needed to be hidden. Breast cancer was just the opposite. There were walks and people who would rally around you if you had cancer. Not so spina bifida.
So she began to realize that she needed to tell her story more freely. She understood finally that she had nothing to be ashamed of and made her peace with something that was part of her, just as much as her hair color or “this need to dance.”
Diane Glass is someone I wish I could meet. It’s rare to find a memoir that comes from someone who’s further down the road of living some of your experiences. and I welcomed it. I need to find out more about her spiritual direction work as well. I appreciated the dance images throughout the book, and I found myself jealous because I’ve never been able to dance at all!
So how many of you reading this are introverts? Is it hard for you to sit down and do anything creative that is going to be exposed to someone else? I have a really hard time with that.
I’m just sitting alone in my room thinking, “I need to write a blog post,” and a certain kind of resistance wells up inside me. There are several things going on. There’s the part of me that wants to read a book or watch TV or a movie. I don’t want to write that night. Sometimes it’s only the fact that I’ve committed to write every night that makes me sit down and do this. I’m not altogether sure that’s it’s a good thing yet. I think I’ve got nothing to say when I sit down, then my fingers hover above the keys. Suddenly I’m typing words that come out of nowhere.
Sometimes when I realize it’s time to blog, I might be thinking about plenty of things that might be worth a blog post. But I don’t feel like putting my thoughts into words. I just want to think them for myself. There can be a lot of pleasure in thinking about things just for the sake of thinking about them. It’s the introvert in me. Sometimes I want to keep my thoughts to myself.
The above quote made me realize that whatever art lies within me starts with me. However, when it is shared with others, it may take off and convince society–or at least one person–of something they needed to believe and didn’t already know in their hearts.
I’m sorry if this image is a trigger to you. It was one that so made me think MIGRAINE!!
I just finished reading Maia Sepp’s The Migraine Mafia. The title refers to the support group she found where she met others who were living with the same issues. She didn’t want to speak openly about the headaches and the effects they had on her life at first; but when she did, she discovered that she didn’t have to pretend she felt better than she really did to people who didn’t understand what she was experiencing.
How many times have we all caught ourselves doing exactly that?
I forget the power of support from people who get it. I forget how scary it is to be vulnerable with people when you first meet them and have felt completely alone in your pain and fatigue. Everyone who knows you thinks they know the answer for you. They don’t know your body, and they’re not doctors, so what makes them so sure they can tell you how to take care of yourself?
It was only when Viive started pushing back against those who didn’t get it and feeling some hope and control over the migraines that she began to take back her life.
It’s a lesson we can all relate to and remember when living with chronic illness and/or disability. I need to think about looking for or starting a support group to learn to live with what is going on in my body. People who don’t understand tell me “if you only did this or that, it would be better.” I wish the surgeries I’ve had would fix all the difficulties I’m living with. Now I have to learn to deal with different things so that I can keep trying to take back my life.
Marly Cornell’s talk “The Best Thing That Ever Happened to Me” presented 9.8.13 at the Lake Harriet Spiritual Center is on YouTube. I thought I’d share it with you all as a followup to yesterday’s book review. Thoug
“I have thought about the writing thing, and thought I’d write a bio about my life, but everyone does that. It’s boring. I have been thinking about it actually, and thought it might be fun writing children’s books. For one, it’s at my level of ability and interest. I am not sure about this, but was thinking about writing a book about my life, but who wants to read about some woman who had a bunch of surgeries and junk? It’s already been done, and those people always come across to me as if they are trying to make people feel sorry for them. I know they are just trying to make people aware. But the books I read like that sound like the people are just whining about their hardships, instead of how interesting living a life having to use a wheelchair can be. How the struggles of life may look horrible to the “normal person”— but to us, we are just living— like them. Well, okay, maybe a couple people have had good books like that, but who wants to hear about more things like that? I’d need to convince myself that there would be someone interested before making myself do it. It would be a lot of hard work for me.”
This was Cody’s response to an email from her mother Marly suggesting she consider becoming a writer. Oh, Cody, how wrong you were!
It wasn’t just “feel sorry for me” inspiration porn. This was Cody’s story, from as close to her as we can get. I was struck by Marly’s ability to tell us about her without resorting to trying to make her a saint or glossing over the stories that make her real and human, not just a “person with spina bifida.” She was a human being who lived and loved and participated in life as fully as she was able.
I wish that Cody had decided to write that book about her life. I would have loved to hear the story from her perspective. I wish she had trusted her voice. I think her mom did, and that’s why she wrote the book Cody never did. I hear echoes of the person she was, and it’s better than nothing. I hope that others with disabilities will decide to tell their stories. It makes a difference to me, and I hope that you will decide to add your voices to those who have done it before you.
I’m reading The Able Life of Cody Jane by Marly Cornell, and I was hoping to finish it in time to tell you all about it tonight, but I don’t think I will. Reading the stories of other people, especially of those with spina bifida who were born around the same time as I was, shows me how far things have come since the late 1960’s/early 1970’s in the kind of medical treatments that were available and the accessibility of education at even the kindergarten/first grade level.
I wonder how I would have grown and developed had I had access to the opportunities there are now. I wonder how my life would have turned out if I had tried using hand controls to learn to drive when I was 16 years old. But then I wonder how my life would have turned out if I hadn’t been able to walk without crutches or braces or even needed a wheelchair in my younger years. I might not have been able to go to the college of my choice. I might not have been able to do the things at college that interested me.
I would have missed my time in Savannah with the Baptist Center. I wouldn’t have have been able to do the walking and climbing stairs that allowed me to function in their older buildings and minister to the people of that community.
I wouldn’t have been able to move to Kentucky for seminary. Nor would living in Canada have been much of an option.
Am I glad things went the way they did for me? This might be something to think about more deeply. I know some of these experiences made me who I am, but would I change them if I could? I just don’t know.
Since I told you all yesterday about Kate Wolfe-Jenson, I decided last night it was finally time for me to sit down and read this book. Dancing with Monsters: Chronic Illness as Chronic Transformation is one of the books I’ve been looking for by starting this website. She wrote the book I wish I could.
I bought this book several years ago, and it’s been sitting in my Kindle cloud all that time. For some reason, I was going through that cloud looking for a book I hadn’t read about chronic illness. Since I bought it, I’ve been diagnosed with kidney cancer, had surgery to remove part of that kidney, had a cervical laminectomy, a new hydrocephalus shunt implanted after forty-some years, and had another surgery to correct a lifelong foot deformity to make it “brace-able.” I’ve lived with the effects of spina bifida since birth. I don’t know anything other than disability, but I related to Kate’s realities and efforts to make meaning from something that made no sense–her diagnosis at the age of twenty with multiple sclerosis and the progressive nature of its effects on her body.
She used this book to tell her story and provided exercises to help others make their own meaning from whatever chronic illness they are living with. I didn’t work through the exercises yet, because I wanted to soak up her story uninterrupted. I do plan to do those exercises, but to work through them much more slowly for learning and healing. I believe they will be helpful when I get to them, though.
I wish I could meet Kate and get to know her IRL (“in real life”). She taught me so much through what I’ve read on her websites and in this book. I highly recommend it to you all.