When someone offered to let me read this book, I nearly turned it down. The reviews I saw said it didn't have enough about the sister and some said that it didn't show the author's feelings enough... but I decided "what the heck" and decided to give it a read...
I was shocked by how much I enjoyed this book! The author has a very sarcastic voice and I loved that - it was a nice change of pace from some books I've read like this one where the spend so much time feeling sorry for themselves. And yes, she admits to being very frustrated with her sister and with the world around here. I liked her honesty, I liked her moxie. I liked that she talked about HERSELF - it was, after all, HER memoir, not her sister's memoir! Too often, I read a memoir and it ends up being about someone other than the author.
The last 20 pages or so of this book make it all worth it. The small stories that end in these sarcastic, funny... oh, it's just fabulous!
Ultimately, this story is about sisterly love. I have 2 sisters of my own and even though Irene has some issues, you can tell that the author dearly loves her. I like that while everyone acknowledges that Irene has problems, they do the best they can for her and themselves. At the end of the day, that's all any of us can do. An amazing story, a touching life. Read it.
That Went Well: Adventures in Caring For My Sister
4 out of 5
In this memoir, Terrell tells of the caring of her sister Irene that was born brain damaged due to the cutting off of oxygen at birth. Her family, in the 1940s, were told to institutionalize Irene, but they just could not do that. She was family, and family takes care of family. Though dad is nearly deaf, mom was stricken with Rheumatory arthritis at the age of 18 and a feisty grandma all under one roof they take on the job of caring for Irene. Though Irene doesnt always want to be part of it with her biting, hitting, manipulating and last but not least her ability to throw anything not nailed down, including a couch, across the room.
This journey to help Irene leads to many national organizations and laws that have helped countless families that thought they had no where to turn. With humor and patients they have helped Irene to live a relatively self-sufficient independent life; and after 60 years of trying to make things all better for Irene and the people around her, Terrell has finally learned that she cant fix it all and sometimes things just have to take care of themselves.
That Went Well: Adventures in Caring for My Sister documents the author's journey in caring for her sister with special needs. Terrell Harris Dougan's sister Irene is a woman in her 60s who still believes in Santa Claus and the Easter Bunny -- but who also enjoys dressing up like these characters for children at a local hospital. Irene's favorite outfit consists of Mickey Mouse knee socks and shorts -- no matter what the weather. Irene finds love wherever she goes -- including her regular visits to the local firehouse and stores -- but she also has a tendency to spend money she doesn't have. Irene wants nothing more but to live independently -- but she can't always be trusted not to spend all her money on candy or to remember to dry her laundry. Irene can be charming but also is prone to tantrums, screaming fits and physical violence. When Irene was born, her family was told to institutionalize her (that is what people did with "those type" of children in the 1940s). But her parents refused and worked for years to find a way to keep Irene at home or living as independently as possible. Their efforts included finding other parents in similar situations and starting the first day care center for special needs children. But Irene seems to have a special talent for getting out of any placement arrangement created for her. And when Irene and Terrell's parents die, Irene's care is put squarely on the shoulders of Terrell, whose efforts on behalf of her sister are amazing, heroic and heart-warming.
Reading this book is like hearing a funny girlfriend talk about her nutty family. Terrell Harris Dougan has a very down-to-earth and humorous writing style that suits this memoir well. She never allows you to pity her or Irene, but she doesn't sugarcoat the very difficult aspects of caring for a sibling with special needs. She writes in straightforward style that simply tells her of her "adventures" in caring for Irene. What she does on behalf of her sister is amazing and provides a pretty thorough history of the special needs community. From her involvement in grassroots Utah politics to serving on the National Association for Retarded Citizens, Terrell's involvement in making life better for all special needs children and adults is eye-opening and interesting. It interested me to learn how the attitudes toward special needs children and adults evolved over Irene's lifetime (spanning the 1940s until the present day). Ironically, so many of Terrell's efforts failed to work for Irene -- forcing Terrell to create a living arrangement that fits Irene's own particular needs.
Although the book focuses primarily on Terrell's adventures of caring for her sister, there is also a fair amount of information about her own life separate from Irene, which is interesting in and of itself. For example, she took part in the beginnings of the Sundance Film Festival, and her account of the initial meeting with Robert Redford is priceless. The sections on her involvement in community theater is hilarious, and I enjoyed reading her thoughts on how hard it is to be a woman today -- do you go for the career, the marriage, the family? How do you balance it all and make it work? These are issues of importance to any woman, and Terrell's opinions are -- like the rest of the book -- down-to-earth, realistic and funny.
I think this is a book that everyone should read -- whether you know someone with special needs or not. Raising awareness about the needs of the special needs population and the burdens that fall on their caregivers is perhaps the best by-product of this book. This is an uplifting book filled with humor and reminders that -- although life doesn't always go the way we hoped --we can often find love, humor, caring and goodness along the way. At the same time, the book doesn't shy away from sharing how difficult it is to be a caregiver for a special needs child or adult. For this reason, I think the book will have special resonance and meaning for anyone who cares for a child or adult with special needs.
Bottom line: This is an easy, fun read with an important message that will open your eyes to the realities of living with and loving a special needs person.
Some Excerpts from the Book
As I mentioned, Terrell Harris Dougan's writing style is like talking to a funny girlfriend. Because of the nature of the subject matter (which might be a turn-off to some), I wanted to share a few excerpts with you so you can get a feel for book's style.
"[Irene] gazed out at the pond, and I imagined her forming the words that would tell me her soul's secrets. Then she looked at me thoughtfully, and said, "I want--a hot dog."
"I didn't realize that by the fourth song I would be hoarse, and by the seventh song my voice would be gone and I would be whispering. For Mama Rose, you need lungs the size of dirigibles and the stamina of a Marine."
"So see, Michelle, there's no right answer for me, or for you, either. I promise you that I have a life. And during that life, I have seen sadness, boredom and frustration in young stay-at-home mothers, but I have to tell you, I haven't seen such joyous looks on the faces of earnest young women carrying those briefcases and wearing pin-striped suits, either. In fact, they look just as tired as full-time homemakers. So what the hell, Michelle? We all have a life, we try to get the best life we can, we live many lives in our lifetime. And we're just trying to take care of ourselves, and each other, as well and as lovingly as we can."
"Two fire engines were parked in front of her house, and her front lawn was lousy with firemen, drinking lemonade. The neighborhood kids were climbing around the fire trucks, in awe of this special lady with her special friends. The firemen had launched her socially for all time. These heroes show up in the most amazing places."
"I'm not going to go all sappy on you and tell you that these angels have blessed our lives. On the contrary. My sister is a big pain in the ass half the time. But maybe so are your other family members, huh? What do you say? How about your friends? Just a pain now and then? How about your mother-in-law? I rest my case."
"Appealing to a higher power really helps. I do ask for help, and I give thanks for all the answers that show up when I need them. Irene threw a phone across the room this morning, and my helpers and I know it's just part of her disability and will never completely go away. When it gets really bad for Irene, or for me, I simply tell my higher power, 'I'm going to turn this over to you,' and then see what happens. The problem somehow gets solved or goes away. And then it goes to hell again."
About the Author
Terrell Harris Dougan wrote a column for the Deseret News for 13 years, for which she won the award for Best Humor Column from the National Federation of Press Women. She served as president of the Utah Association for Retarded Citizens for eight years and on the board of the National Association for Retarded Citizens for two terms. She also took part in the beginning of the Sundance Film Festival. Dougan lives with her husband in Salt Lake City, Utah.