When I ask people what they think of when they hear the term 'cerebral palsy,' I usually get one of two responses. They either think of a smiling, crumpled child in a wheelchair on a poster or commercials on late night TV with lawyers enticing parents of CP kids to sue the pants off their obstetrician.
It was a myth you couldn't function on opiates: shooting up was one thing but for someone like me-jumping at pigeons beating from the sidewalk, afflicted with Post Traumatic Stress Disorder practically to the point of spasticity and cerebral palsy-pills were the key to being not only competent, but high-functioning.
An acquaintance of mine, a notary by profession, who, by perpetual writing, began first to complain of an excessive wariness of his whole right arm which could be removed by no medicines, and which was at last succeeded by a perfect palsy of the whole arm. . . . He learned to write with his left hand, which was soon thereafter seized with the same disorder.
Among the poor, the approach of dissolution is usually regarded with a quiet and natural composure, which it is consolatory to contemplate, and which is as far removed from the dead palsy of unbelief as it is from the delirious raptures of fanaticism. Theirs is a true, unhesitating faith, and they are willing to lay down the burden of e weary life, in the sure and certain hope of a blessed immortality.
I have my father's lopsided mouth. When I smile, my lips slope to one side. My doctor sister calls it my cerebral palsy mouth. I am very much a daddy's girl, and even though I would rather my smile wasn't crooked, there is something moving for me about having a mouth exactly like my father's.
Chimamanda Ngozi Adichie
My grandmother, Nina Eaton, founded United Cerebral Palsy. At the time that my father was born with it, there were no resources for people with the condition. So my grandmother and grandfather, who lived in Brooklyn, tried to reach out for some type of resource or support, and people just told them to institutionalize my father.
My words to Anna, as we stood contemplating the Scuola Grande di San Marco, moments before entering Venice Hospital, came true: 'With a fae§ade like that, I could even accept having a deformed child.' I accepted Tito's cerebral palsy. I accepted it as if it were the most natural thing in the world. I accepted it with delight. I accepted it with enthusiasm. I accepted it with love.
Bibles read without prayer; sermons heard without prayer; marriages contracted without prayer; journeys undertaken without prayer; residences chosen without prayer; friendships formed without prayer; the daily act of prayer itself hurried over, or gone through without heart: these are the kind of downward steps by which many a Christian descends to a condition of spiritual palsy, or reaches the point where God allows them to have a tremendous fall.
J. C. Ryle
When I was three, I fell and I got Bell's palsy in my face. My mom said the first day she called the rabbi, and he said a prayer for me but nothing happened. The second day she called the Mormons, and they said a prayer for me and my face was healed, so my whole life was going around as a Jew who was giving talks in Mormon churches about being healed by the Mormons.
For him that stealeth, or borroweth and returneth not, this book from its owner, let it change into a serpent in his hand and rend him. Let him be struck with palsy, and all his members blasted. Let him languish in pain, crying aloud for mercy, and let there be no surcease to this agony till he sing in dissolution. Let bookworms gnaw his entrails in token of the worm that dieth not, and when at last he goeth to his last punishment, let the flames of hell consume him for ever. Curse on book thieves, from the monastery of San Pedro, Barcelona, Spain
But as in the degrees of sickness thou art to submit to God, so in the kind of it (supposing equal degrees) thou art to be altogether indifferent whether God call thee by a consumption or an asthma, by a dropsy or palsy, by a fever in thy humours, or a fever in your spirits; because all such nicety of choice is nothing but a colour to a legitimate impatience, and to make an excuse to murmur privately, and for circumstances, when in the sum of affairs we durst not own impatience.' Jeremy Taylor's 'Holy Dying', extract from chapter IV.I (The Practice of Patience) para 5.
Gus is the Cat at the Theatre Door. His name, as I ought to have told you before, Is really Asparagus. That's such a fuss To pronounce, that we usually call him just Gus. His coat's very shabby, he's thin as a rake, And he suffers from palsy that makes his paw shake. Yet he was, in his youth, quite the smartest of Cats - But no longer a terror to mice or to rats. For he isn't the Cat that he was in his prime; Though his name was quite famous, he says, in his time. And whenever he joins his friends at their club (which takes place at the back of the neighbouring pub) He loves to regale them, if someone else pays, With anecdotes drawn from his palmiest days. For he once was a Star of the highest degree - He has acted with Irving, he's acted with Tree. And he likes to relate his success on the Halls, Where the Gallery once gave him seven cat-calls. But his grandest creation, as he loves to tell, Was Firefrorefiddle, the Fiend of the Fell.
YOU WANNA SEE ME GET COOL, THE ORIGINAL RUDE BWOY, FUCK WITH THE NEW TOYS LIKE PISTOLS, I DISMISS CREWS, SO ORDER SOME NEW BOYS BLAST THE FUNKY BUDDHA'S LOCKIN ASH UP IN MY BODY FOR FOZZY PATSI I BRING SAD DAYS TO NIGGAZ CONSTANT LY! FREAK FUNKADELIC PHRASES CAUSE I'M TRUE SCHOOL I'M FUCKIN MADONNA DOWN TO SMURFETTE DOWN ONE DOWN TO M'BUFU FUNKS FORMATIC, THE FAT SHIT, THE WICKED BASKET FROM CASKETS PLUS I'M ROLLIN BLUNTS WITH NIGGAZ ASHES SMOKE ON THE CHOKE, LIGHT A TOKE UNTIL IT'S PROPER I DESERVE AN OSCAR FOR PULLIN GLOCKS OUT NIGGAZ MOUTHS 'CAUSE I KILL LIKE THAT, PLUS I ROLL LIKE THAT I'M THAT GUY WITH CEREBRAL-PALSY EVEN BO KNOWS THAT BUT FUCK THAT, WE DROP THE NEW RUNNER TO GET SOME GANJA GOIN UPTOWN, WE CHECK BENNY RED OUT, HE PULLS THE SMACK OUT THEN ROLL UP THE BILLS-NILZ, OR BETTER YET THE PUTE THE LOO-PAY, RANK NEAR MY NOST TO ROCK THE BLOCK HITTIN NIGGAZ UPSIDE THE HEAD WITH ROCKS IN SOCKS, GLOCK ON COCK BACK, TRIGGER-HAP, P P P ROCKIN THAT UNITY MOTHERFUCKER! YEAH YEAH MOTHERFUCKERS, IT'S ON IT'S ON IT'S ON
Decades after little Colleen's death, my sister Kathy still loves her daughter dearly. Colleen was born with cerebral palsy. She died in Kath's arms in a rocking chair at the age of six. They were listening to a music box that looked very much like a smiling pink bunny. The opening quote in this book, 'I will love you forever, but I'll only miss you for the rest of my life, ' is from Kath's nightly prayers to her child. Colleen couldn't really talk or walk very well, but loved untying my mother's tennis shoes and then laughing. When Mom died decades later we sent her off in tennis shoes so Colleen would have something to untie in Heaven. In the meantime, Dad had probably been taking really good care of her up there. He must have been aching to hug her for all of her six years on earth. Mom's spirit comes back to play with great grandchildren she'd never met or had a chance to love while she was still - I almost said 'among the living.' In my family, though, the dead don't always stay that way. You can be among the living without technically being alive. Mom comes back to play, but Dad shows up only in emergencies. They are both watching over their loved ones. 'The Mourning After' is dedicated to all those we have had the joy of loving before they've slipped away to the other side. It then celebrates the joy of re-unions.
But the Esquire passage I found most poignant and revealing was this one: Mister Rogers' visit to a teenage boy severely afflicted with cerebral palsy and terrible anger. One of the boys' few consolations in life, Junod wrote, was watching Mister Rogers Neighborhood. 'At first, the boy was made very nervous by the thought that Mister Rogers was visiting him. He was so nervous, in fact, that when Mister Rogers did visit, he got mad at himself and began hating himself and hitting himself, and his mother had to take him to another room and talk to him. Mister Rogers didn't leave, though. He wanted something from the boy, and Mister Rogers never leaves when he wants something from somebody. He just waited patiently, and when the boy came back, Mister Rogers talked to him, and then he made his request. He said, 'I would like you to do something for me. Would you do something for me?' On his computer, the boy answered yes, of course, he would do anything for Mister Rogers, so then Mister Rogers said: I would like you to pray for me. Will you pray for me?' And now the boy didn't know how to respond. He was thunderstruck... because nobody had ever asked him for something like that, ever. The boy had always been prayed for. The boy had always been the object of prayer, and now he was being asked to pray for Mister Rogers, and although at first he didn't know how to do it, he said he would, he said he'd try, and ever since then he keeps Mister Rogers in his prayers and doesn't talk about wanting to die anymore, because he figures if Mister Rogers likes him, that must mean that God likes him, too. As for Mister Rogers himself... he doesn't look at the story the same way the boy did or I did. In fact, when Mister Rogers first told me the story, I complimented him on being smart - for knowing that asking the boy for his prayers would make the boy feel better about himself - and Mister Rogers responded by looking at me first with puzzlement and then with surprise. 'Oh heavens no, Tom! I didn't ask him for his prayers for him; I asked for me. I asked him because I think that anyone who has gone through challenges like that must be very close to God. I asked him because I wanted his intercession.
Our family was starting. We kept on moving with our young lives, shortly afterward and took Ben Young with us everywhere. But pretty soon Pegi started noticing that Ben was not doing the things some other babies were doing. Pegi was wondering if something was wrong. She was young, and nothing had ever gone wrong in her life. People told us kids grow at different rates and do things at different times. But as Ben reached six months old, we found ourselves sitting in a doctor's office. He glanced at us and offhandedly said, "Of course. Ben has cerebral palsy." I was in shock. I walked around in a for for weeks. I couldn't fathom how I had fathered two children with a rare condition that was not supposed to be hereditary, with tow different mothers. I was so angry and confused inside, projecting scenarios in my mind where people said something bad about Ben or Zeke and I would just attack them, going wild. Luckily that never did happen, but there was a root of instability inside me for a while. Although it mellowed with time, I carried that feeling around for years. Eventually Pegi and I, wanting to have another child after Ben, went to se an expert of the subject. That was Pegi's idea. Always organized and methodical in her approach to problems, Pegi planned an approach to our dilemma with her very high intelligence. We both loved children but were a little gun-shy about having another, to say the least. After evaluating our situation and our children, the doctor told us that probably Zeke dis not actually have CP-he likely had suffered a stroke in utero. The symptoms are very similar. Pegi and I weighed this information. To know someone like her and to make a decision about a subject as important as this with her was a gift beyond anything I have ever experienced. It was her idea, and she had guided us to this point. We made a decision together to go forward and have another child.
Oh, Starbuck! it is a mild, mild wind, and a mild looking sky. On such a day - very much such a sweetness as this - I struck my first whale - a boy-harpooneer of eighteen! Forty - forty - forty years ago! - ago! Forty years of continual whaling! forty years of privation, and peril, and storm-time! forty years on the pitiless sea! for forty years has Ahab forsaken the peaceful land, for forty years to make war on the horrors of the deep! Aye and yes, Starbuck, out of those forty years I have not spent three ashore. When I think of this life I have led; the desolation of solitude it has been; the masoned, walled-town of a Captain's exclusiveness, which admits but small entrance to any sympathy from the green country without - oh, weariness! heaviness! Guinea-coast slavery of solitary command! - when I think of all this; only half-suspected, not so keenly known to me before - and how for forty years I have fed upon dry salted fare - fit emblem of the dry nourishment of my soul - when the poorest landsman has had fresh fruit to his daily hand, and broken the world's fresh bread to my mouldy crusts - away, whole oceans away, from that young girl-wife I wedded past fifty, and sailed for Cape Horn the next day, leaving but one dent in my marriage pillow - wife? wife? - rather a widow with her husband alive! Aye, I widowed that poor girl when I married her, Starbuck; and then, the madness, the frenzy, the boiling blood and the smoking brow, with which, for a thousand lowerings old Ahab has furiously, foamingly chased his prey - more a demon than a man! - aye, aye! what a forty years' fool - fool - old fool, has old Ahab been! Why this strife of the chase? why weary, and palsy the arm at the oar, and the iron, and the lance? how the richer or better is Ahab now? Behold. Oh, Starbuck! is it not hard, that with this weary load I bear, one poor leg should have been snatched from under me? Here, brush this old hair aside; it blinds me, that I seem to weep. Locks so grey did never grow but from out some ashes! But do I look very old, so very, very old, Starbuck? I feel deadly faint, bowed, and humped, as though I were Adam, staggering beneath the piled centuries since Paradise. God! God! God! - crack my heart! - stave my brain! - mockery! mockery! bitter, biting mockery of grey hairs, have I lived enough joy to wear ye; and seem and feel thus intolerably old? Close! stand close to me, Starbuck; let me look into a human eye; it is better than to gaze into sea or sky; better than to gaze upon God. By the green land; by the bright hearth-stone! this is the magic glass, man; I see my wife and my child in thine eye. No, no; stay on board, on board! - lower not when I do; when branded Ahab gives chase to Moby Dick. That hazard shall not be thine. No, no! not with the far away home I see in that eye!