This is a great biopic about Cerebral Palsy. Daniel Day-Lewis won an Oscar for his portrayal of Irish writer Christy Brown, who was born with cerebral palsy. Without having any intention of bringing up domestic experience, I believe Daniel Day Lewis played marvelously. I’m convinced that he really tried hard to study everything about CP (Cerebral Palsy, not Cut/Paste) since he had to do most of anything using only his left foot. I read once that Lewis remained in his wheelchair between takes in order to absorb the character he portrays. “Day-Lewis’s portrayal of Christy Brown and his handicap is so convincing that it is difficult to believe that Day-Lewis is not actually stricken with Cerebral Palsy” – Amazon

Cerebral palsy word clouds

Cerebral palsy can’t be cured, but treatment will often improve a child’s capabilities. Many children go on to enjoy near-normal adult lives if their disabilities are properly managed. In general, the earlier treatment begins the better chance children have of overcoming developmental disabilities or learning new ways to accomplish the tasks that challenge them. Treatments may include physical and occupational therapy, speech therapy, drugs to control seizures, relax muscle spasms, and alleviate pain; surgery to correct anatomical abnormalities or release tight muscles; braces and other orthotic devices; wheelchairs and rolling walkers. he best cure for cerebral palsy is the strong, solid communication within family members as well as the wisdom and patience to deal with the ‘special needs’ and the limitations of those who suffer from it.

The film opening

An alternative to the general run of “triumph over the odds” biopics, My Left Foot is the true story of Irish cerebral palsy victim Christy Brown. Paralyzed from birth, Brown (played by Hugh O’Conor as child and Daniel Day-Lewis as an adult) is written off as retarded and helpless, misdiagnosed as mentally disabled for the first 10 years of his life, Brown learned to write using his left foot, the only body part he could control. But Christy’s indomitable mother (Brenda Fricker) never gives up on the boy. Using his left foot, the only part of his body not afflicted, Brown learns to write. He grows up to become a well-known author, painter, and fundraiser, and along the way falls in love with nurse Mary Carr (Ruth McCabe). There’s no sugarcoating in My Left Foot: Brown, a heavy drinker, was by no means lovable. Day-Lewis and Fricker both won Academy Awards for their performances, and the film was nominated for Best Picture, Best Director, and Best Adapted Screenplay. Also notable are the late Ray McAnally in his next-to-last film role as Christy’s father, and venerable Cyril Cusack as Lord Castlewelland. Director Jim Sheridan co-scripted with Shane Connaughton from Christy Brown’s autobiography.

Daniel Day Lewis as Christy Brown, a well-known Irish author, painter, and fundraiser who does all the works using only his left foot.

THE BOOK DESCRIPTION:

Christy Brown – The Life That Inspired “My Left Foot”

The book upon which the film was based

Christy Brown was severely disabled from birth with cerebral palsy and unable to use any part of his body other than his left foot. Doctors said he was a mental defective and that he would never be able to lead any kind of normal life; Christy proved them wrong.This is the first authorised biography of Christy Brown, written with the help and support of his surviving family members and artists who knew him well. It tells the astonishing story of Christy’s struggle with his disability and his development as an artist, author and poet, beginning with his mother teaching him to read and write using chalk on the worn floor of their small family home. Christy’s memoir MY LEFT FOOT was published in 1954 and later made into an Academy Award-winning film starring Daniel Day-Lewis, while his bestselling novel DOWN ALL THE DAYS was described by the Irish Times as ‘the most important novel since ULYSSES’.

Using previously unpublished letters and poems, this book marks Christy Brown’s importance as a writer and celebrates his indomitable spirit. His story is an inspiration, proving that an individual with hope and determination may overcome almost impossible odds.

Christy Brown and nurse Mary Carr (Ruth McCabe), a loyal therapist whom he fell in love eventually

Christy Brown as he learned to control his jaws’ muscles by blowing soap bubbles

A great caricature of Daniel Day Lewis as Christy Brown from wittygraphy.com

Christy Brown with his affectionate mother

Since understanding and patience are the keys to successful parenting, especially those whose children suffer from Cerebral Palsy, these are exactly what we are practicing at home, to understand and to be patient. Communication can be troublesome sometimes, especially when he’s not well and he fails to communicate his feeling.

This is an amazingly good movie, and film performances don’t get any more compelling than those delivered here by Daniel Day-Lewis and Brenda Fricker. Day-Lewis’s portrayal of Christy Brown and his handicap is so convincing that it is difficult to believe that Day-Lewis is not actually stricken with Cerebral Palsy. But his portrayal, like the Irish writer and artist he portrays, gets far beyond the physical challenges of the disease. He conveys a warmth, humor, and human intensity that avoids cloying sentimentality. In terms of the movie content, I can only echo the superlatives of the previous reviewers. The film itself deserves 5+ stars.

Sources:

amazon.com, http://www.georginahambleton.com/, google.com

Useful links:

My Left Foot on imdb.com

Cerebral Palsy

Feel free to contact me whenever you feel any of the images uploaded are copyrighted

His second hospital trip

As explained previously, Ariq had been hospitalized twice due to his fever and vomiting. Unlike his first hospital sleep-over, the second hospital trip was accompanied by seizure. It was a couple of weeks after Eid ul Fitr 2010 when this happened. That afternoon, I went out with my wife and my younger brother on a double date to Gandaria City. We went home around 7pm and parted near Lebak Bulus soccer stadium where my wife took a taxi home while I continued the drive to my mom’s house, my brother dropped me off there. I remember asking my wife to join me but she refused because she preferred to go home, she said that she felt bad for leaving them too long.

I stayed at mom’s for about an hour while accompanying my uncle (mom’s youngest brother) and his wife who came over to see mom that night. Next trip, my uncle drove me home and stopped by few blocks away from home to have a late dinner. I was just about to sit when Ratna called informing that Ariq vomited all over the bed and turned pale. Ratna found out later after Baraka ran to her exclaiming “Mama, kakak muntah”. Ariq slept early after dusk while Raka played in the living room with her. I dashed out home instantly without saying any words to my uncle. I ran home, as fast as I could, with all my might just to get home as fast as possible. We were dining about a kilometer from where I live so it was quite tough to run that distance but I had no other choice than to rely upon this smoker’s lung and heart, pumping em hard! If I’m not mistaken it was a week after I had been hospitalized because of gastric problems. I got cold sweat whenever I was too tired but that night, I didn’t give in to any of that.

When I got home, it was paralyzing to see him once again, helpless, cold-sweating, looking pale, stiffed and covered in his own vomit. He shit in his diaper too because of the heavy turbulence inside his stomach during vomiting. I lifted and carried him to the car, ready for our second hospital trip. When I was carrying him, I felt his body trembled, he was shaking (we found out later on that it was seizure). That moment I felt it myself that it was such a long drive to the nearby hospital. When we got there, carrying the 30 kilogram-weighed Ariq, I kicked the emergency door, rushed in and placed him on the bed, gasping for breath. It took me two minutes in order to catch my breath and be able to tell the on duty nurses what happened; luckily they were fast giving Ariq oxygen for first aid while I was busy gasping. I called my uncle, I called my mom, I called my sister, and I called all people I could think of, just to tell them that Ariq was in hospital. I also called one of my aunts who is a doctor, so that she could drop by keeping us company, assisting should there be any questions/medical inquiries.

Once again I stood like a statue, muted, overwhelmed by sadness and exhaustion. There he was, our cheerful Ariq, still looking pale, cold sweating and lips turned blue. I cried (again), caressing his forehead, hugging him, telling him to wake up and it’s no use. He barely moved and he didn’t even realize we were all around him. All I thought was to hell with dignity, I cried because it’s too painful to see him that way with all the wires, oxygen and other displaying instruments all over him. I cursed and cursed, wondering why the same thing happened again to our lovely one. I burst out in tears when my uncle, the one who drove me home, arrived. We are so close to one another, frankly speaking, I know him inside-out. He helped me informing others as well as taking care of the administration or admission as such.

One thing that made me confused, even though he vomited heavily, his temperature was normal so why did he have seizure, what triggered his vomit? Was it something he ate? Did he have something not fresh? But all of these didn’t make any sense since we all had the same meals. Anyway, once again the doctor decided that he must be hospitalized; luckily we are all insured by the office so when things turn bad, we just go to any partnering hospital, show the admission staff our insurance card and the hotline will take care of it. It’s very simple but I didn’t think of doing it myself that night. My uncle was the one who did all of these. Thanks a lot uncle : )

It is such a blessing to have come from two big families who always communicate with one another so when this happened, several relatives showed up, giving support as well as the necessary assistance. We stayed at the emergency room for about an hour or so while they were preparing the room for him. I negotiated with the admission staff so that we could put him in a suite or any room alone. I remember how restless he had been during his first hospital overnight so we thought it’s wise to get him a single room like the last one. I was so exhausted and hungry but I didn’t care about it for all I cared about was Ariq had to be taken care of first.

The rest of the following plot had been more or less the same, he was restless, we woke up, he tried to pull the infusion and we struggled to prevent him doing that. Here’s what differed the second visit: We are advised to send Ariq for an EEG (Electroencephalography) test to record the brainwave activities to detect problems in the electrical activity of the brain. Brain cells communicate with each other by producing tiny electrical impulses. In an EEG, this faint electrical activity is measured by putting electrodes on the scalp. A kind of test we believe quite hard, if not impossible, to conduct. In order to undergo an EEG test, the patient must be calm, conscious and must not be sedated; he/she must refrain from doing unnecessary movements since those movements affect the brainwaves. We know Ariq best, he would pull all of those wires and cables away from him. Any stuff strange or unfamiliar to him will surely make him uncomfortable and that is exactly why he tried to break free from the infusion.

So, in the morning, with Ariq on a wheelchair, already up, refreshed and kicking again, we headed down to EEG section, especially prepared for his test, dedicated for him in an unlimited time so that the test could be conducted whenever he’s ready for it. There, Ariq was given an oral sedative, a mild one, just to calm him down. An hour or two passed, Ariq was restless, he continued singing, mumbling and praying instead of sleeping or even calming down (first attempt failed successfully). In the afternoon, through his infusion, again he was given another shot of sedative. Thank God, he fell asleep so we rushed downstairs, with him sleeping on his hospital bed, we didn’t want to wake him up by mounting him on a wheelchair like in the morning. As soon as we were at the EEG room doorway, we were about to stroll him inside when suddenly we heard him singing (LOL, second attempt failed). Around dusk, we took him downstairs, put him on the bed and sedated him so we could instantly conduct the test when he fell asleep. Hours and hours elapsed, he kept on singing, laughing and reciting all short Surah from the Holy Koran, straight until 9pm, the last shift at the hospital (FAILED!).

In the morning, when Dr. Irawan, his neurologist, dropped by, he gave us a prescription of stesolid rectal tubes, enemas containing the active ingredient diazepam. Diazepam is a type of medicine called a benzodiazepine. Benzodiazepines are used for their sedative, anxiety-relieving and muscle-relaxing effects. He also told us that whenever he’s having a seizure, we don’t have to go to the hospital, just give him proper medication fast through his rectum. He emphasized that a prolong seizure (more than 5 minutes) may result in brain injury and that we had to bear this in mind. We didn’t have to guts to imagine how such injury would affect him any worse than his present condition since his cerebral palsy has already given him a brain trauma resulting in delayed development.

That day was dilemmatic, on one hand we were so grateful that Ariq was allowed to go home in the afternoon and sad on the other hand because now it would be useless to perform an EEG (after a seizure, a person mustn’t exceed 2x24hrs if he wants to undergo the test because his brainwaves will be normal again). Finally we went home but now with a burden inside our hearts and thoughts that we had to be ready anytime the seizure attacks, so much ready so that we don’t feel tensed when this happened; therefore, we can give him first aid treatment quickly and effectively. Well, hang in there buddy, hang in there tough. We’ll be with you along the way….

Just like we all know that ‘a picture speaks a thousand words’, I will give a lot more for you to see. These pictures are not for you with weak hearts:

INSIDE THE EMERGENCY ROOM:

Heart-rate monitor display

INSIDE THE SUITE:

ARIQ STABILIZING AFTER THE OXYGEN WAS REMOVED :

Ratna was praying endlessly for his recovery

Sleeping restlessly

THE DAY AFTER:

GOING HOME FOR ARIQ’S CLOTHES AND OUR STUFF:

Baraka at home. He’s been asking for his brother

THE CHEERFUL BOY RETURNED:

THE LAST (FAILED) EEG ATTEMPT:

It is sad to conclude this post with a fact that his being hospitalized for the second time had been the starting point for other epileptic seizures. Stay strong boy!

References:

http://en.wikipedia.org/wiki/Electroencephalography

http://www.netdoctor.co.uk/medicines/100002466.html

The charming first son

It’s been much too long since the last time I wrote for this blog. Many things happened during my absence and all evolved around our beloved first son. He’s been having frequent convulsion (many refer this as an epileptic seizure: occasionally referred to as a fit, is defined as a transient symptom of “abnormal excessive or synchronous neuronal activity in the brain”) due to his cerebral palsy. This seizure occurred monthly and with a similar pattern. There’s more, he was hospitalized twice because of this.

The unbearable charming smile showing his gaping front teeth

In our daily life, our communication with Ariq is usually a one-way communication, either we ask him to do simple task or he tells us what he feels/wants; therefore, in such an emergency state like when the seizure attacks, communicating with him is quite difficult. When this happens, we rely upon our understandings towards his gestures or facial expressions since Ariq can only communicate such common feelings as cold, hot, salty, bitter, sweet, sad, and happy and few others.

Ariq and Baraka: Our two precious jewels

Sunday morning fun at Tavis Sports Club, Cinere

Ratna, my lovely wife with our two charming boys

It all started few months ago when one night, my wife told me, that he suddenly shivered and vomited several times. I was still at the office that night. I didn’t see how it happened but for a while I couldn’t say anything upon hearing the news. I couldn’t stop imagining how unbearable it must have been, if I had been there, seeing this charming and cheerful son just laid helplessly, emptying his bowel, in agony. She told me that he didn’t move and his temperature was nearing 40° C and since giving him alcohol-dipped swabs under his arm didn’t seem to help much, she rushed to the hospital. We were lucky that the hospital is nearby, only a few blocks away, but still she felt it was such a long way to get there. It normally takes us 10 minutes to reach hospital from our place.

The Puri Cinere Hospital on Foursquare

Our precious Ariq

Next thing I know, I was racing my way to the hospital on my bike. I thanked God that I managed to get there few minutes after they arrived, it was a smooth ride, and the road was quite empty despite the fact that it was rush hour. I was shocked, the reality was much worse than I imagined. He was on bed, helplessly the way I had imagined but he was too weak to move, pale and with the lips turned blue, his eyes were opened and this empty stare really made me cry (yes, I cried). I might look tough but deep down inside I was breaking down, I tried hard not to look worry so that I could cheer her up but it was useless, I cried anyway. To be honest, I used to sneak out from the physician’s room whenever one of the sons got sick and had to be injected, I just couldn’t stand seeing them in pain and I feel grateful that my wife never forces me to stick around. That night, I was going to sneak out when the emergency nurse said that Ariq should have his medication through infusion as first aid treatment. There was a battle in my mind whether I’d better stay or leave but then I decided to stay. The thought of losing him haunted me; I just stood in the corner watching the nurse preparing the solution and needle. When she inserted the needle, I thought he was going to cry but then I was wrong, he was also too weak to cry, he didn’t even grin in pain.

The infusion needle

That night I didn’t sleep at all, I stood by the bed watching over our precious Ariq just in case his condition deteriorated, I could not stop thinking the worst scenario. This over imagination tortured me, this was worsened by the sight of my wife sobbing, caressing his forehead, and endlessly mumbling her prayers for his recovery. I remember telling her (forcing her to be exact) to sleep it off. I just thought it would be better if I was alone for I needed some time alone to clear my mind.

Few hours after being transferred from Emergency Room

Baraka: The affectionate second son

That was when I remembered Baraka our second son, I didn’t even think about who took care of him during our stay at the hospital. Luckily the nanny hadn’t gone home so she was able to babysit for us. She said that Baraka slept very late that night, he was also restless, and he kept asking “Kakak mana?” and said that he wanted to see his brother. Baraka, then aged 2,5 years, understands his brother’s disability and we’re grateful for this even though they sometimes fight over much of anything like books or toys, they love each other and they even sleep hugging one another and that is so sweet.

The two loving brothers

At about 3 am, Ariq woke up and he was amazed to see the infusion on his hand, he said “Kakak mau pulang” and thank God, that sparkling eyes, the lively stare were back in business, I was so happy so I woke her up and what happened after that was amusing, we both spent hours, struggling to do anything we could to prevent him from pulling his infusion and this went on until dawn when he finally fell back to sleep. In the morning, if I’m not mistaken, the on duty nurse took some blood sample and said, upon seeing that Ariq seemed well already, that Dr. Irawan (Ariq’s neurologist) would probably let him go home that day. She was right, the doctor dropped by, examining the blood test result and told us that he could go home. From that moment, triggered by the doctor’s question “Kakak mau pulang ya? Boleh kok, sudah sembuh”, Ariq was restless, he kept on saying that he wanted to go home. The doctor then asked the on duty nurse to unplug the infusion bottle set, leaving only the needle attached for final medication before going home.

The day after

Ariq having his lunch before going home:

The infusion needle was still attached for his final medication

The day Ariq was hospitalized had been the most tensed 24 hours of our life. Although both of us are aware that God ‘hand-picked’ us to care for him with all of his being special needs, we keep on praying for patience,  wisdom to accept all of these wholeheartedly and also the strength to carry on . Hopefully you stay with us til the end our beloved son.

Our family portraits:

Eid ul-Fitr 2009

Family lunch

The fun-loving family somewhere in Cinere hillside

References:

http://en.wikipedia.org/wiki/Convulsion

http://en.wikipedia.org/wiki/Seizure

Caring for children with special needs

Having a child with special needs, for some people, can be disastrous. We commonly use the term of special needs to describe the limitations as well as the inabilities possessed by such children. Children who suffer from special needs, both as a result from birth defects and injuries may experience such things from mild disabilities, developmental delays until mental retardation or even psychiatric problems. In other words, the disabilities can be medical, developmental, learning disabilities or even all three of them depending on the seriousness of the case.

However, we may not confuse this being with special needs with those of suffering from a mild developmental delay (depending on the child’s age). Bear in mind that every child develops in a unique phase, that’s why we have the terms of early birds and late bloomers. In short, the term of early birds refers to those who are developing earlier compared to those of their age while the latter refers to those taking their time a bit slowly thus developing a bit later than others of their age.

Early bird

Late bloomer

So it is very important for practical purposes that children who have special needs be identified as early as possible and that they be defined as such, so that they can receive the special help they need in order to live the best lives possible.

Anyway, without wasting any longer, the purpose of writing this article is simply over my gratefulness toward Ariq, my first son who suffers from cerebral palsy due to lack of oxygen during the last hours of pregnancy and delivery.

When one of his therapists in school advised us that Ariq had better taken up swimming lesson to strengthen his weak muscles, we barely had any issues against it. Ariq has been an eager swimmer (though not exactly in the context of really swims). One thing for sure, my son is not afraid of being in a pool. Once he’s in, he’ll be splashing around, yodeling and murmuring such language only he understands. He’ll be impatient at the pool edge, can’t hardly wait to get wet.

Splashing around and yodeling

His first session began approximately a month ago. It was a clear Friday morning around December. I took him there with the rest of my family, just curious on what methods the swimming therapist would use when dealing with such a child. Apparently, the key to success is simply patience. The therapist simply went with the flow, following our son splashing around at first then little by little, he started guiding him into performing simple exercise like using both feet to move and walk on the pool floor. It worked perfectly fine since Ariq really cooperated.

The eager swimmer

That day, Ariq was not alone. When we got there, there were other people from Ulaka, one of the schools for special needs. Later on we found out that Friday morning is their swimming session. Seeing children with special needs is nothing new for us since our son is also special but these children are far more different, their cases are seemed to be more complex than ours. We don’t mean to brag but if you watch closely, Ariq doesn’t seem to have disabilities as he appears fine, good-looking as I may add, and his legs are also in a golden proportion with the rest of his body parts. On the contrary, in these children case, it is obvious that they suffer more. We couldn’t seem to stop ourselves from praising for the blessings given to our Ariq.

Our heart and soul

Nevertheless, one thing I admire from them. There were quite a lot people at the pool from different ages but they seem to blend with one another. I saw some sort of strong bond among each one of them. They were eager to help one another both in and out of the pool. They lent hand whenever one of their friends needed help during the therapy sessions. Those with better shape and conditions became natural leaders for their friends. They observed the surrounding in case one of them needed help or in danger. It’s such a sweet thing to do.

They may look less perfect than all of us; yet, they show more compassion than we all do. God knows how much I was astounded by this. Hopefully whoever they are, they are able to cope better with the situation well and fast. I also hope that their parents do not feel inferior or ashamed for having such a child with such condition.

Source:

http://www.parents.com/baby/development/problems/your-late-bloomer/

http://specialchildren.about.com/od/gettingadiagnosis/p/whatare.htm

Regret

Regret is an intelligent and emotional dislike for personal past acts and behaviors. Regret is often felt when someone feels sadness, shame, embarrassment, depression or even guilt after committing an action or actions that later wished that he or she hadn’t done (wikipedia)

A few days ago I went to my sister’s house attending a wedding proposal to a nephew. I went there with my wife and the two sons, as you all know it’s post Eid Al-Fitr so our two maids went home and promised to return on October 1st 2009. As soon as we got there, it’s crowded already, lots and lots people came around from both sides. What’s more terrifying was the two boys didn’t seem to enjoy the crowd too much, the full house seemed to worsen the hot day so I took them in my sister’s bedroom, a cozy and cool place to dwell temporarily.

For a moment I was busy taking pictures for the occasion, my sister wanted me to help with additional camera so that I brought one that day. The photo session had to stop since Baraka, our second son, had enough with the bedroom and all the crowd. He begged me to take him and so I did. He enjoyed my company, he was busy exploring the neighborhood, running here and there touching things and moving back and forth the neighbors’ houses. The hot sun didn’t seem to bother him at all despite his heavy sweating.

Ariq and Baraka

Baraka started walking about two months ago when he was 1,3 years that’s why babysitting him has been quite exhausting since he tends to be so active exploring everywhere. The same thing happened that day, he seemed to enjoy his new neighborhood. He started running (not walking) everywhere, every second, every place. I was heavily sweating trying to keep up with him. Actually taking pictures of him was more exhausting that his being active (LOL), I had to run after him, taking my camera, trying to capture his acts.

Baraka Badr Al-Din

When he was running towards the house, there was a boy, aged around seven, who suddenly put his arm on Baraka’s shoulder then pushed him away causing him to fall down instantly. He was crying loudly, shocked. I was startled since it happened so fast. Next, I remembered yanking the boy’s arm, furious, trying to dig why he pushed my son. I yelled at him, asking “Why did you push him?” I also yelled at him “Do you want me to push you as well?” . The boy just stood there staring at me, uttering unclear Afterwards, the sight of his father standing nearby had worsened my anger. I looked at him disgustedly, saying “Don’t you teach your children some manner?” I told him how his son pushed mine until he fell down.

However, his apologies really calmed me down, soon enough I had even forgotten what happened at least until he approached me to say that he was sorry while explaining that his son suffers from autism. This last statement was like a huge blow and soon I was overwhelmed with guilt and regret. Next, I was questioning myself “Why didn’t I think something was wrong?”. I should have come to an easy conclusion or even assumption that something must have been wrong. The boy didn’t even wink or even say he was sorry when confronted for his devilish acts. I said to him that I was sorry, the thought of raising a child with special needs can indeed be frustrating sometimes. I explained that my son suffers from cerebral palsy, a condition somewhat similar to his son and that I understood taking care such a condition is not easy.

Suddenly God revealed the most painful truth, the sight of the autistic boy running here and there screaming meaninglessly, uttering the most bizarre sentences ever. I regret myself for not seeing this earlier, I was too blind to see because of my anger. I didn’t have the guts to see his father anymore. Everything seemed so wrong and next I condemned my stupid anger over and over again. I remember my wife advised me to be more patient and calm. She said that I should have been wiser in dealing with such a situation even though my reaction as father is understandable, yet I should be more and more cautious next time.

Every now and then, I cannot stop regretting that moment. I cannot seem to forget the boy’s static look, his ashamed father, my anger and everything that contributes to this guilt. The voice of his father explaining that his son suffers from autism still echoes inside my head. She’s right, older should have come with wiser. To the boy and his father, wherever you are, forgive me for yelling at you, forgive me for yanking you in anger, I am so sorry. I didn’t mean to disrespect and God knows how I feel for you.

Written in guilt, September 2009

Images: flickr

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