Trapped: My Life with Cerebral Palsy

Highly recommended!
This book is a strikingly honest memoir telling about the author’s life with cerebral palsy.Coping physically with a disability is challenging enough. Add to this coping with the emotional part. Add to this the problems interacting with other people—people without disabilities.What do people without disabilities know about what it feels like to live with disabilities? The answer is: very little!And this is where the interaction problems begin. People are cruel, people are tactless, people are inconsiderate, and people are ignorant. Not all people are. There are people who are kind and helpful, yet they are, quite often, a bit at a loss when it comes to interact with a disabled person.How should one act towards someone with a disability?Should one pretend not to notice? This is silly. The disability is too obvious. Should one ask for how long the person has been “like this”? Sounds a bit tactless, doesn’t it? Or should one ask whether the person had been in an accident? This is what I have occasionally chosen. Yet I would always feel bad right after, realizing that—accident or birth defect—the disabled person would probably have to answer this question several times a day, 365 days a year, and this for decades. I would always be relieved when the person replied that it was an accident. Then, I could inquire about the accident and listen empathetically how the accident had happened, what injuries had been suffered, what progress had been made, etc., etc. It was always a bit embarrassing when the answer was that it was a birth defect. This came occasionally with a look, saying: ‘O.k., now you know that I am a genuine cripple. Are you feeling better now?’And this is the reason why I, like so many other people, quite often, look away when I see someone with a disability. When I do this, I also feel bad, and I am sure that the disabled person, who in most cases will notice that I look away, will feel bad, as well.I have not yet found the right way to act towards people with disabilities.The only disabled person I ever felt comfortable with was a 3-miles-up-the-road neighbor, whom we met several times at a barbecue party held by one of our neighbors. This man, who was severely disabled from birth and sat in a wheel chair, had such dazzling humor that we laughed with him for hours every time we met him and completely forgot what he looked like. (Then, some 6 years ago, when we wanted to invite him ourselves and asked someone for his full name and phone number, we learned that he had been in a fatal car accident, only few weeks earlier, while we had been out of town. It was assumed that he had suffered a seizure before he crashed into another car. We are still mourning this man. I wish we had invited him earlier.)Then, there is also the question when to offer help or assistance.—I have a bad back. This is why I use an electric cart at Walmart’s and also at the supermarket. It happens, quite often, that when I look at shelves pondering what to take, someone offers me help. This is so kind and well-meant. But it is also annoying because I don’t need any help. I can get out of the electric cart when I need to. I only use it to avoid backache.So let’s face it: It is a problem for both sides, the disabled person and the not-disabled person.I wish someone came up with a perfect solution. And I bet, so does Fran Macilvey.For Fran, not only the physical problems are difficult to cope with from early childhood on; the emotional and interaction problems are, too. Even loving family members hurt Fran’s feelings.The parents claim to treat Fran the same as her siblings. But do they really?No, they are not treating her the same. It is not possible to treat her the same. And wherever and whenever Fran is treated the same, she is bound to over-exhaust herself or stay behind on family walks and hikes.Understandably, Fran gets annoyed when she can’t keep up and they leave her struggling. Yet she also gets annoyed when someone offers her an arm to lean on. She wants to be self-reliant. For her family members, offering help is a “damned if you do, and damned if you don’t” situation. And Fran absolutely refuses to use a wheel chair.The books starts with Fran telling how she keeps struggling along on the side of walkways, so not to get knocked over by joggers or other people who are in a hurry, yet she is, nevertheless, falling, hurting herself and/or landing in dog poop. When reading this, my first thought was: ‘Why on earth doesn’t she use a wheel chair?’ This is because I didn’t mind using a wheel chair when my back problems were at their worst. And this is probably because I was brought up NOT to be self-reliant. Throughout my childhood and teenage years, my mother insisted on doing everything for me, and while I found this annoying, it didn’t bother me enough to fight it. (Not that I was a submissive child; I just chose my battles wisely.) My mother did not wait on me hand on foot with the purpose to spoil me; she did it because she wanted everything done her way, not allowing the slightest difference from her routine. My husband was brought up the opposite way. So when we discussed Fran’s desire for self-reliance, my husband fully understood it. We eventually came to the conclusion that a compromise might have been best, that is, walking short distances on suitable trails and sidewalks and using a wheelchair for longer distances and on crowded walkways. This would be our choice. Yet Fran’s choice was and is different.Fran is stubborn, which is part of being resilient. She, quite often, insists on doing things the hard way. And she occasionally comes to regret it.Growing up, Fran experiences anger, self-hatred, and depression. While this is understandable, it had never occurred to me that someone born with a disability might have such emotions. I would have expected an accident-victim to feel depressed, but I had always thought that a person who had never known a normal life would be used to his or her condition. This shows how ignorant “normal” people can be. To my excuse: I have never experienced chronic anger, self-hatred, or clinical depression. And I have also never cared too much about what people would think of me. (If they liked me, fine. If they didn’t like me, too bad.) So one might allow me (and people like me) some mitigating factors.Reading this book, my heart went out to Fran. I felt so sorry for all her physical and emotional suffering, especially the painful surgeries that were supposed to “make her better” but never did. (This reminded me of the old pilot wisdom: “If it ain’t broke, don’t fix it.”) And I was so happy for Fran when, towards the end of the book, she finally found true love and, quite unexpectedly, even came to experience the joys of motherhood.Throughout the book, I admired Fran’s resilience and her ongoing struggle to lead a life as normal as possible.The book is eloquently written, yet first and foremost, it is written with staggering honesty. Fran Macilvey not only tells what it is like to live with a disability, she discloses her most private thoughts and emotions. In other words: She bares her soul.There were a few things I did not like about this book:The reader never learns why Fran’s parents split up and whether they got divorced or only separated. I also would have liked to learn why Fran never pleaded with her mother to take her and her sister out of this terrible boarding school, where beside other hardships, she never even got enough to eat. There didn’t seem to be any real need for this boarding school. (I also attended such an awful boarding school for 1 1/2 years. So I could well relate to Fran’s suffering at this place. Yet in my case, it was the only way to go to high school until my parents were able to rent a flat in Munich.)I found some parts of the book too sketchy and other parts more detailed and explicit than necessary.And there were a number of lengthy complaints that had very little to do with Fran’s disability. Most of us not-disabled people will have also experienced cruel teachers, nasty coworkers, unfair superiors, long waiting times in hospitals, inconsiderate nurses, inapt doctors, and inedible hospital food.With certain changes, this book could have been a 5-star rating on my scale.Notwithstanding the shortcomings I found with this book, I strongly recommend everyone to read it. There will hardly be another book that allows the reader into the brain and body of a person forced to live with a disability.We who we are able-bodied or only have a bad back, bad knees, a bad shoulder, and/or a few other not-so-very life-impeding ailments need to learn what life is like for disabled people and what we can do to, possibly, make life a little easier for them.And one last word to the author:Fran, please tell my how I should act when, next time, I come across someone with a disability.Don’t tell me to just say, “hi”, as I normally don’t say, “hi” to strangers. So this wouldn’t be natural behavior.—Should I smile? Yet couldn’t it be that the person takes my smile for charity?And how should I act when I meet a disabled person at a social gathering? There it would be normal to say, “hi”, yet at what point, if at all, should I mention the disability, and what can I say that’s neither hurtful, nor annoying, nor tactless?HELP!

It had some boring spots which I skimmed over
It had some boring spots which I skimmed over. Other parts were more interesting. I found she complained a lot and wasn’t the nicest person by her own admission. I have a friend that is in the same situation as the author. The friend has a million things to complain about but she NEVER does; in fact she’s always thankful for what she does have. Perhaps that gave me a slanted view of this book.

‘Trapped’ by Fran MacIlveyI was looking forward to reading this book as I am a parent of a little girl with CP. I found Fran’s graphic and personal tale so gripping that I wanted to jump in and cuddle, kiss and salute her all at once! I would say too, that at times I felt also privileged to be reading Fran’s account of family life, often feeling like I was eves dropping on her privacy. There are moments when I felt physically sick, the visceral accounts of her hospital visits and stays, which must have been so utterly frightening and traumatic. I particularly related to her boarding school days, as my own boarding life remained the same, monotonous wave length as Fran’s. I feel much of her ‘story’ is very fitting with the archetypal tribulations of people who simply feel that they ‘don’t fit in’. One exception is that whilst we have our historical angst and regrets, Fran literally suffered intense physical pain, disbelief and an astonishing tenacity to ‘go her go her own way’, against all odds. I found her honesty to be so raw and expressive that I often felt tearful and had to put the book down. I suppose (and can’t help it, it’s the way I am), I felt sorry for her. Not in a pitiful way, but in a humane and dare I say, distressed way. I wanted to feel settled in the knowledge that those players in Fran’s life had realised their part in her side of events that effected her life, not so much theirs. Of course, they all won’t have read her book (yet!), but I feel a disappointment in human frailty and ignorance, especially from people who ought to know better. Ultimately, Fran ‘knows better’ about her own life. If anything, a chord has resounded that we must never presume all people who have CP to feel the same, to except their ‘lot’ and just resign to a benign and un wanting, un needing existence. Clearly, as Fran refers to as a universal ‘disability’ in us all, we all have choices as to how we live our lives. We don’t necessarily take the easier options but find our own lights and live by them. I felt that Fran’s concluding chapters left me feeling that this lady had come to a deeper understanding of her meaning in this Universe and happily had chosen to be forgiving and loving. She is an inspiration to anyone who has CP and also for parents like me, who wish to have an insight and further understanding of the inner workings of a struggling existence (against her own demons and those imposed upon her by society). We have a long way to go in this society towards our expectance of ‘difference’ and can be so wholly judgemental of what we (the elitist ‘normal’ people) think towards anyone who ‘we’ deem to be ‘different’. It’s hard reading, I know, but I see and feel it frequently in my experience of a mother of a child with CP. She seems to have to excel harder to be accepted, against all the tiring and painful background of her day to day existence. People are so surprised at her abilities, as if they always default to the conclusion that she is unable to achieve anything. Fran’s anecdotal chronological example of getting her baby downstairs and out the door is so typical of this! Often, when I hear a judgemental remark about people with disabilities and childbirth, for example, I always draw their attention the fact that we never seem to notice let alone discuss and judge anyone else’s ability to bring up their kids! It’s just that everything is in a different dimension. Everything is tiring, needing calculation and preparation. Life is hard and people either help and encourage others through thick and thin, or they totally neglect their humanity and drive a shaft of utter shame for the rest of us to endure. The rest of us, who may not have Fran’s physical ‘distractions’, certainly share her humanity and feelings. I hope this book reaches far and wide, because it is a seminal and graphical account of a woman who is simply trying to get on with her life, against all odds. Well done Fran, I salute you!

I read this book as someone who also has Cerebral Palsy and I was interested in Macilvey’s point of view and experiences of living with the condition. The book offered an extremely honest and heart-warming account of her struggles and triumphs, detailing her journey to acceptance and peace. As a disabled person, I found that I could relate to many of her experiences, especially those of finding a loving partner willing to see beyond her disability.I would strongly recommend it!