When I was about 7 years old, I found a little paperback book on my parents’ bookshelf. It was on its side in front of the other books, spine facing out. The cover showed a little girl with long red pigtails and a big smile. The title was Karen, by Marie Killilea.
She was “the girl who lived a miracle!” The back cover featured her words in big letters: “I can talk. I can walk. I can read. I can write. I can do anything!” She was a little girl with cerebral palsy. She was like me.
I immediately wanted to know everything about her, this girl who almost shared my name. Her name was Karen Killilea, and she was born in 1940. She had learned to walk, that Holy Grail of human accomplishment, as far as my mother was concerned. I wanted to know how she did it. I asked my mom if I could read the book; it didn’t even occur to me that she had left it there for me to find. Of course, she said yes.
Almost 40 years separated Karen Killilea’s birth and mine, but there were so many parallels between our stories. Karen was born prematurely, whereas I was deprived of oxygen during birth, but the end result was the same for both of us. The words the doctors told our parents were, too. She will never walk, or talk, or feed herself. She’ll be severely mentally retarded*. You should put her in an institution and go on with your life. Thankfully, her parents and mine refused to believe those words. They believed we had potential. They searched the country for answers, until they found hope.
When Karen Killilea was a child, there were no laws guaranteeing children with disabilities the right to an education. She was fortunate that a parochial school was willing to accept her. I was born after the Individuals with Disabilities Education Act had passed, so I had a right to go to school, but that didn’t mean it was easy. My mother had to fight for me to be mainstreamed into regular classrooms, and I spent a few years in private school because the local middle school wasn’t wheelchair accessible.
We were both very intelligent, but frustrated with the physical limits that had been placed upon us. We both had some friends, but were still lonely, and found comfort in our beloved dogs. We even love the same breeds. It wasn’t until after I got my Newfoundland that I remembered she had one, too. You can’t ask for a more gentle, loving, and protective guardian.
We both spent a lot of time in physical therapy. In Karen’s day, that meant stretching and moving her legs repeatedly in patterns to teach movement, and walking with parallel bars and later crutches. She wore heavy metal braces that locked her knees in place, and would swivel her hips to walk. By the time I was born, plastic foot and ankle braces were the new technology. They are a major improvement over metal braces, but still ugly and cumbersome. I had to wear shoes that were a few sizes too big, and felt like a clown. My parents made me do physical therapy for at least an hour every single day. I only got my birthday and Christmas off. I felt miserable and trapped.
I remember reading Karen and being struck by how much her mother was like mine. Marie Killilea believed in her daughter, no matter what. She also pushed her, sometimes to the breaking point. I often wondered how Karen felt about her braces and therapies and endless trekking from one specialist to the next. Her mother portrayed her as almost entirely good-natured and cooperative. I judged myself harshly for not being the same way. I think my mother hoped that Karen Killilea would inspire me to keep going, to believe that I could accomplish everything she had, and do it with a smile on my face. I’m not sure Karen’s story changed my mood much, but she did help me feel like I wasn’t alone. Somewhere out there was a girl with my name who had been through the same things I had. She was my soul sister, my older twin. I wondered what her life was like now.
A few years after reading Karen, my life had changed tremendously. I had learned to walk! I could use a makeshift walker made out of an old chair with wooden skis on the bottom, take a few steps on parallel bars, and a few steps with a regular walker. My parents were thrilled. I tried to be. As Karen’s parents had with her in the book, my parents tried to teach me how to fall safely. It didn’t work for me. If my mother walked away from me, I would start screaming in terror, and usually lose my balance and end up falling. Every step was exhausting. I was told that it was a huge accomplishment, that I should be so proud. I couldn’t understand why I wasn’t happier about it, like everyone else.
In 6th grade, I was in the school library when I spotted a book called With Love from Karen in a rack full of paperbacks. The cover showed a girl whose face by then had become very familiar to me. It was “my” Karen. The book was a continuation of her story! I wondered why my mother hadn’t told me about it. I checked it out immediately.
When I brought it home from school, my mother’s reaction wasn’t what I expected. She said she didn’t want me to read it — or I could, but I wasn’t allowed to read the last few pages. She disappeared into her room and returned with her own copy of the book. The last several pages had been torn out. She took the library copy and made me return it the next day.
I couldn’t understand her behavior. She had promised to never censor what I was allowed to read. What could be so terrible that she’d change her mind? Of course, I did what all kids do when they’re told they can’t read or watch something. I found a way to read it anyway. My school aide didn’t know about my mother’s objection to the book, so she was all too happy to hand the library copy back to me. I sat in the nearly empty library between classes and read the last nine pages.
In that moment, Karen transformed my life. Her voice, mostly filtered through her mother throughout the first book, rang out loud and clear in the final pages of its sequel. One day in the garden, Karen broke down in tears, afraid to admit to her mother how she had been feeling. She had begun to realize that while walking with her braces and crutches was slow and painful, using a wheelchair gave her freedom. Here are her words.
“I’m so dependent in braces. I have so much more freedom in the wheelchair. Now—should I give up the braces and crutches–forevermore? Should I use a wheelchair exclusively? Should I?”
Her mother listened, but refused to state her own opinion, and said she wanted Karen to decide for herself. Then Karen said “I’ve done some thinking about the twenty years you and Daddy and the kids have worked getting me to walk. To say nothing of the expense.” She said she feared being considered a failure.
Her mother replied, “We did not put twenty years into getting you to walk. Whatever we put in was to get you to your maximum potential for independence. Walking was never an end in itself–rather a means to an end. What you have to decide, is whether now, and in the future, walking will best serve that end.”
Karen was still struggling to decide, so she made a list of pros and cons on a piece of paper. After much thought, she said “I am going to ‘graduate’ from crutches and ‘commence’ in a wheelchair!” Then she showed her mother the list. Under braces and crutches, she had written the words prison and pain. Under wheelchair, she wrote freedom. Mother and daughter embraced, as years of unspoken feelings and tension melted away. Then Karen spoke the last words she has ever spoken publicly:
“No more will I be a drab, slow little sparrow that hops around with his head down. I’ll be free, really free. I’ll be an eagle with my face to the sun.”
The instant I finished reading, I knew why my mother had wanted to hide those pages from me. I knew that Karen was right. For her, and for me, walking was painful and exhausting. It didn’t give us liberation or independence. Only a wheelchair could do that. I knew I couldn’t tell my mother this truth I had learned, but it didn’t matter in that moment. I knew, and I could keep the secret close to my heart, and be comforted in the knowledge that my feelings were not wrong.
It took a few more years, but my mother eventually accepted that using a power wheelchair was my path to independence. She became involved with the disability rights movement, and learned to embrace disability as a difference rather than a limitation. I lost her to cancer far too soon, but I am grateful for everything she did. Even when she made mistakes, she only wanted the best for me.
I have always wondered why Karen has never chosen to tell her story. When I got Internet access in college, one of the first things I did was look her up. I found very little information. I have researched her sporadically ever since. Not much is known about her life. She worked for many years as a secretary at a community for priests, and perhaps still does, if she hasn’t retired. A few people have managed to acquire pictures of her, and post them in a group for fans of the books. One person, who has since passed away, managed to meet her and talk extensively to one of her friends. Again, we can learn a bit of Karen’s perspective, but filtered through others.
According to this document, Karen says:
“I’m amazed that people are still so interested in me. But the person they come to meet doesn’t exist now and truthfully, never did!” She goes on to say that “I love my mother, but never forget that I didn’t write those books; she did. I was only the object of her books. No, I’m not going to write my own book. I am a people person, but I also like my privacy.”
That little glimpse, that small window into Karen’s mind tells me so much. To others, it may say little, but to someone who has lived it, her words speak volumes. I think I know why she hasn’t told her story. I think she believes that people wouldn’t want to hear it. She believes that the world has a certain image of her, that perfect, perky little girl who takes whatever adversity is thrown her way with a smile and good cheer. She is frozen in their minds as innocent, saintly. How could people accept the real Karen, the adult Karen who has opinions and desires and aches and pains and now wrinkles all her own? How would they react to the truth of how she felt about the endless therapies, and her mother writing a book that told her story without any input from her?
Perhaps she fears being seen as ungrateful. I struggled with that after my mother’s death, and still do every time I discuss my complicated childhood. But I’ve learned that I can love and appreciate my parents without agreeing with every choice they made. I can talk about their faults and still honor their wisdom and sacrifices. I believe she could, too. And I believe people would understand. No one’s family is perfect. And if they can’t accept Karen as she is, and Karin as I am, then they’re not worth it, anyway.
Karen Killilea, if you’re out there, I hope you’ll consider telling your story. You inspired me — not your mother’s version of you, but the real you who had the courage to accept yourself as a person with a disability. There are so many of us who would like to hear from you — people with cerebral palsy and our families who read your mother’s side of the story, and now want to hear yours. We have lived the messy reality of cerebral palsy, and we will embrace your words, whatever they may be. Today, there’s no need to deal with a publisher, and polish everything to perfection. You can just write your feelings, and share them. If you don’t have a place, I’d be happy to host your words here. It would be an honor to get to know the real you.