Her groans are an attempt to talk but she does not speak. It has been said that Steven Hawking's brain works at 200% while his body lost 100% to ALS. Conversely Miranda may be fitter than a couch potato, with the TV always on to stimulate her senses. With only half a brain much of the operating software for her body functions is impaired, despite a daily rigorous physiotherapy. She even seems to lack linguistic memory and we have no idea which part of her brain is recoverable, if at all. Her associates once called her a live wire. Can you imagine how frustrating a dynamo, possessing an active mind and a highly energetic life, staring blankly into space for much of the day? The stage of whether she speaks or not is crucial. Even a yes-no response would be encouraging. If not she would still be in vegetative state. That means I'm still responsible to decide for her life. Dreadful.
What can one take away from such life-changing debilitating experience? We are born into the world with nothing but our tiny physical bodies. As we grew we also deteriorate to our deaths, some of us making bigger dents in society than others. This illness is an affront to our mindless accumulation of wealth, fame or assets. I knew that but then only in theory - Miranda practiced it. The lives she touched and relationships remained from so many who came to wish her well and others who think of her recovery.
Thursday Nov 27: Something to be thankful for - she's starting to swallow more. Pray that she takes enough to have her meals without the feeding tube. Then she can exercise her gums.
Friday Dec 5 8 am: We have a problem. Due to the surgeon's oversight a hole was made in her gut to remove waste when she first went into coma. Now the colostomy bags were changed so often that bleeding sores have multiplied around the stoma. But it was a blessing in disguise for the last 3 years. Just have to manage it until she recovers her consciousness to request for toilet breaks.
Wednesday Dec17 5 pm: Last 2 weeks of dealing with waste management. Now to encourage her to make eye contact and to respond to touch. She still cannot turn her head to focus on visitors.
Christmas Eve 9 am: Spasms and epileptic fits - is this bad or a good sign that the brain is trying to restore? Seeing her bravely going through it can bring tears. Back on the nerve tablets. May the blue Christmas be cheery. And the New Year better.
Saturday Jan 10: Ever since the new year she is struggling to sense the surroundings, crying out at night. But still vegetative, she is not able to eyeball anyone around.
Friday Jan 16 Noon: Pray that she continues to improve internally although she appears to be inert externally. That she can begin to sense the right side of her head. But I think she's enjoying her exercises.
Tuesday Jan 20 1 pm: So yesterday I decided to introduce the dogs to her, whom she loves like her children. She regarded each one in turn, but the attention span was brief, both ways.
Saturday Jan 24 1 pm: Sleeping by day and groaning by night, what is she saying? But at least she groans. She communicates by her eyes, so I believe that visitors nowadays will connect also, if you look straight at her.
<End of Post> Next: Steady State
Wednesday 26 November 2014
Wednesday 1 October 2014
Time and Space
Bald Eagles, gibbons, wolves and schistosoma mansoni (worms) - what do they have in common? They mate for life. When Miranda first returned home from the hospital they did not recommend her for neural rehab, simply because it required her to be conscious or communicative. Three years hence and she is still not ready. But the brain needs inputs to recover - just like a growing baby. Every day, and possibly for the rest of her life I wonder what else could be done - to improve her sense of time and space. Every time her head turns or her eyes look around is the chance for her brain to restore, ever so little. Everything her palms touch or when fingers clench an occasion arise for her motor neurons to become normal again. When she almost fall from exercises or transfers her cries of anguish are useful feed-backs to her brain function. I must also be careful whenever she chokes on fluids, but shocks like that are fodder to the brain. Only recently did I realize that we must seize these instances to help her recover consciousness. Care-giving is not just about making patients comfortable - it involves aggressive awareness of things we all take for granted everyday. It is easy to let days, months or years pass, expecting her to heal herself, even if some are consciously praying daily - something proactive can and must happen. I know if I slack off and leave things to the maid - nothing active will happen and Miranda will just fossilize. Pray that we must always remain alert, in everything we do in life. If not we are already dead.
9 am: More than ever now is the time for visitors to touch and eyeball her for attention.
Sunday Oct 12: 9 am: Have to get into the habit of appreciating simple joys in life - like seeing her pleased when easing the bowels regularly and for me - just getting a good night's rest.
Tuesday Oct 21: 2 pm: Have to keep hoping that she is still around. Easy to give up now.
Friday Oct 31: 10 am: Yesterday she could acknowledge visitors in her line of sight in her own way - by moving her jaws. Her eyes are more alive but she will not utter a sound.
Tuesday Nov 4: 2 pm: Legs active as ever. Will she be able to again move around like the day she first got her driver's license in her father's Ford Anglia? Not without her motor memory.
Tuesday Nov 18 1 pm: With the rigor of her exercises I think she is fitter than a couch potato. But with only half a brain maybe the other half can take her to consciousness.
<End of post> Next - Groaning, talking, frustrating
9 am: More than ever now is the time for visitors to touch and eyeball her for attention.
Sunday Oct 12: 9 am: Have to get into the habit of appreciating simple joys in life - like seeing her pleased when easing the bowels regularly and for me - just getting a good night's rest.
Tuesday Oct 21: 2 pm: Have to keep hoping that she is still around. Easy to give up now.
Friday Oct 31: 10 am: Yesterday she could acknowledge visitors in her line of sight in her own way - by moving her jaws. Her eyes are more alive but she will not utter a sound.
Tuesday Nov 4: 2 pm: Legs active as ever. Will she be able to again move around like the day she first got her driver's license in her father's Ford Anglia? Not without her motor memory.
Tuesday Nov 18 1 pm: With the rigor of her exercises I think she is fitter than a couch potato. But with only half a brain maybe the other half can take her to consciousness.
<End of post> Next - Groaning, talking, frustrating
Friday 1 August 2014
Enduring Strength
"When I'm weak then my strength will be perfected"
Elsewhere in the Bible the Apostle Paul also states that his spiritual weakness made him lived like dragging a dead body around. But Miranda is not dead - her Spirit is alive and well, she listens attentively when someone prays or read to her. If she has her mind she would do whatever it takes to end the seemingly unending burden of her illness. So even if she is not completely conscious I should take courage. And remain strong with age. But age has its weaknesses. Sometimes we need superhuman strength. Like this last two weeks of Islamic holidays for the maid. We become more creative when short-handed. Like transfer single-handed.
8 am: Still groaning or trying to express something.
Sunday Aug 10 2 pm: Tenacity from Adversity - two weeks of lone combat. There are no stock answers to to the daily obstacles - all your years of preparation spiritual or not seems mostly irrelevant, just have to get on top of problems. Whether to steady her wobbly legs, clean up the mess from a broken shit-bag at midnight, or change the bedding unaided, smelling from diapers swollen with urine, dragging her body from bed to wheelchair. Most of all need constant eye contact to keep her conscious of the real world. But so many invisible hands at prayer and supporting. Can almost feel the encouragement.
Sunday Aug 17 10 am: Inexplicable sadness. That engulfed me this morning. I had dream of seeing her well again holding a sketch pad in her hand. "I want to experience what the resurrection of Christ is like", and she proceeded to sketch lions and other animals. She was not good at drawing. But love animals. I woke up depressed. When you lose someone that close everything else pales. Amazing that people can live themselves to death and yet not notice the depth and intricacies of our lives.
Monday Aug 25 8 am: Happy 66th! If only she would say what she wishes for.
Thursday Aug 28 9 am: Well-wishers, grateful thanks - for your visits especially, including A*Star staff and chairmen. You don't know how much a fillip you've given to a silent, odious life of care-giving. I'm sure Miranda felt it in her own way..
Monday Sep 1 noon: Found out how to reduce bed sores and fungal infection for comatose patients - transfer at their urine cycles. 5 times a day had to shift positions from lying to seating and bed and clearing the bladder at each shift. Need strong arms and backs for lifting. Three years to this day of due diligence. What is the meaning of this life?
Monday Sep 8 8 pm: How else can I stimulate her mind other than standing her up in 3 hour intervals and moving around the house? The urine cycles are also not consistent and can be really frustrating. Now the emphasis is developing her sense of time and space.
Sunday Sep 14 8 am: Yesterday she looked normal, but still unable to turn to attention. Hope she will be restored - such an encouragement for many.
Wednesday Sep 17 4 pm: The only gratifying response I have is when she looked so relieved after an exercise to flop on the wheelchair or the bed. Can almost detect a smile of content. Pray that her senses continue to recover as she sits rocking on her exercises. Only then will it speed her restoration.
Friday Sep 26 1 pm: So in order to wake up her consciousness we moved her around the house, standing as often to arouse her sense of space and time. If I don't do it who will?
<End of Post> Next - Time and Space
Elsewhere in the Bible the Apostle Paul also states that his spiritual weakness made him lived like dragging a dead body around. But Miranda is not dead - her Spirit is alive and well, she listens attentively when someone prays or read to her. If she has her mind she would do whatever it takes to end the seemingly unending burden of her illness. So even if she is not completely conscious I should take courage. And remain strong with age. But age has its weaknesses. Sometimes we need superhuman strength. Like this last two weeks of Islamic holidays for the maid. We become more creative when short-handed. Like transfer single-handed.
8 am: Still groaning or trying to express something.
Sunday Aug 10 2 pm: Tenacity from Adversity - two weeks of lone combat. There are no stock answers to to the daily obstacles - all your years of preparation spiritual or not seems mostly irrelevant, just have to get on top of problems. Whether to steady her wobbly legs, clean up the mess from a broken shit-bag at midnight, or change the bedding unaided, smelling from diapers swollen with urine, dragging her body from bed to wheelchair. Most of all need constant eye contact to keep her conscious of the real world. But so many invisible hands at prayer and supporting. Can almost feel the encouragement.
Sunday Aug 17 10 am: Inexplicable sadness. That engulfed me this morning. I had dream of seeing her well again holding a sketch pad in her hand. "I want to experience what the resurrection of Christ is like", and she proceeded to sketch lions and other animals. She was not good at drawing. But love animals. I woke up depressed. When you lose someone that close everything else pales. Amazing that people can live themselves to death and yet not notice the depth and intricacies of our lives.
Monday Aug 25 8 am: Happy 66th! If only she would say what she wishes for.
Thursday Aug 28 9 am: Well-wishers, grateful thanks - for your visits especially, including A*Star staff and chairmen. You don't know how much a fillip you've given to a silent, odious life of care-giving. I'm sure Miranda felt it in her own way..
Monday Sep 1 noon: Found out how to reduce bed sores and fungal infection for comatose patients - transfer at their urine cycles. 5 times a day had to shift positions from lying to seating and bed and clearing the bladder at each shift. Need strong arms and backs for lifting. Three years to this day of due diligence. What is the meaning of this life?
Monday Sep 8 8 pm: How else can I stimulate her mind other than standing her up in 3 hour intervals and moving around the house? The urine cycles are also not consistent and can be really frustrating. Now the emphasis is developing her sense of time and space.
Sunday Sep 14 8 am: Yesterday she looked normal, but still unable to turn to attention. Hope she will be restored - such an encouragement for many.
Wednesday Sep 17 4 pm: The only gratifying response I have is when she looked so relieved after an exercise to flop on the wheelchair or the bed. Can almost detect a smile of content. Pray that her senses continue to recover as she sits rocking on her exercises. Only then will it speed her restoration.
Friday Sep 26 1 pm: So in order to wake up her consciousness we moved her around the house, standing as often to arouse her sense of space and time. If I don't do it who will?
<End of Post> Next - Time and Space
Monday 5 May 2014
Glimmer
Once in a long while, midst a frighteningly
unending storm, comes a faint glimmer of light. Miranda now focuses more
readily when I eyeball her, and seems to listen to words. I can feel that
she responds more to exercises that train her cognition of space and time. But
she needs more time to track visitors, utter a vocal response or swallow food
normally. Often sleep escapes her. Without any feedback I've been crestfallen. Seeing no future, I wanted badly out of this. But
there are glimmers of hope, just. Being immobile she faces other problems. Like an
automobile, parts of a human being fail through lack of use. Her gums bled
after more than two years not biting on food. Her feet developed painful corns
as her brain fails to do proper pronation that we do unconsciously.
For me I felt like I'm kept by my shoes! And I live on the shoestrings of
hope.
9 am: A week of strenuous striving. Standing ground in the most arduous climb against insurmountable
elements. The least I could do is not to slide downhill.
Saturday May 10 10 am: Inactive hands but overactive legs bruised herself against the guard rails. Comatose patients need also to be protected from themselves. Miranda is used to protecting everyone else. Amazing that a broken pipe in the brain reversed all that.
Sunday May 18 9 pm: She tried to talk the other night, but the words came out all garbled and her eyes were looking elsewhere.
Monday May 26 8 pm: Does she feel lonely now when sitting there awake? If so she must be more conscious of her surroundings. Without words from her cannot tell. But now she will focus on the faces of visitors - but uncommunicative. Looking at her missing left forehead can be discouraging.
Sunday Jun 1 9 am: Third night in a row - awake and softly groaning for couple hours. Surely she must be expressing her loneliness.
Friday Jun 6 9 pm: Overcoming spasms this past week - medication to reduce this brain malfunction might have caused extreme drowsiness. But she looked normal this evening.
Tuesday Jun 10 8 am: Had this inexplicable sadness. Hope she continues to improve - hands are softer these days.
Saturday Jun 14 1 pm: Still living in the subconscious, not showing awareness of people around. But I thought I saw her smile this morning.
Friday Jun 20 10 am: Her speech still slow soft uttering. But she is swallowing better. Going for a review Monday.
Tuesday Jun 24 4 pm: Vegetative for the rest of her life? The verdict from the neurosurgeon blows me off - its been more than 2 years I've been carrying her on my back. But when we reached home away from the hospital environment I could see she gave the hint of a generous smile.
Monday Jun 30 10 pm: Though unable to speak, she does value company. Seen from the look of her face when I approach her. Chest congestion, so had to clear it often.
Monday Jul 7 7 pm: Dreaded to go home and see her stricken in bed again. But this time she'll look at me, still unable to acknowledge. Fighting some bedsore rashes.
Friday Jul 25 10 am: So 3 weeks fighting chest congestion. A result of years lying on her back. These days I stand her up often to clear the chest (and also learn to manage waste - the brain has to re-learn this all over again). My legs must remain strong.
<End of Post> Next "Enduring strength"
Saturday May 10 10 am: Inactive hands but overactive legs bruised herself against the guard rails. Comatose patients need also to be protected from themselves. Miranda is used to protecting everyone else. Amazing that a broken pipe in the brain reversed all that.
Sunday May 18 9 pm: She tried to talk the other night, but the words came out all garbled and her eyes were looking elsewhere.
Monday May 26 8 pm: Does she feel lonely now when sitting there awake? If so she must be more conscious of her surroundings. Without words from her cannot tell. But now she will focus on the faces of visitors - but uncommunicative. Looking at her missing left forehead can be discouraging.
Sunday Jun 1 9 am: Third night in a row - awake and softly groaning for couple hours. Surely she must be expressing her loneliness.
Friday Jun 6 9 pm: Overcoming spasms this past week - medication to reduce this brain malfunction might have caused extreme drowsiness. But she looked normal this evening.
Tuesday Jun 10 8 am: Had this inexplicable sadness. Hope she continues to improve - hands are softer these days.
Saturday Jun 14 1 pm: Still living in the subconscious, not showing awareness of people around. But I thought I saw her smile this morning.
Friday Jun 20 10 am: Her speech still slow soft uttering. But she is swallowing better. Going for a review Monday.
Tuesday Jun 24 4 pm: Vegetative for the rest of her life? The verdict from the neurosurgeon blows me off - its been more than 2 years I've been carrying her on my back. But when we reached home away from the hospital environment I could see she gave the hint of a generous smile.
Monday Jun 30 10 pm: Though unable to speak, she does value company. Seen from the look of her face when I approach her. Chest congestion, so had to clear it often.
Monday Jul 7 7 pm: Dreaded to go home and see her stricken in bed again. But this time she'll look at me, still unable to acknowledge. Fighting some bedsore rashes.
Friday Jul 25 10 am: So 3 weeks fighting chest congestion. A result of years lying on her back. These days I stand her up often to clear the chest (and also learn to manage waste - the brain has to re-learn this all over again). My legs must remain strong.
<End of Post> Next "Enduring strength"
Friday 14 February 2014
Surviving a broken heart
We can. Despite what we hear from songs and read in novels. People have survived on their own - some long after their partners have effectively left them consciously. This past
year I've often asked fellow believers how can God call two people to
live lives together for thirty, forty or even fifty years - then takes
one away. There comes a time when your soul-mate doesn't answer, nor look
at you, nor even feel present. Life takes on a different dimension - very
unlike the time when you first met. But it is not as if your life is
now halved. We should be more than the sum of our singleness.
No more our old selves - just infinitely better. I want to believe that.
And go forth without fear.
Valentine's Day 10 am: Was it just coincidence when she opened her mouth when I was about to brush her teeth? Or raise her head when I told her to? No way to confirm.
Sunday Feb 23 9 pm: Impasse - still little progress on her sense of space and time. But she'll look at visitors who talk straight at her line of sight.
Saturday Mar 1 10 am: Still unable to swallow well for a meal. Will have to live with the feeding tube for a while longer.
Friday Mar 7 11 am: This morning very encouraged by her ability to do her standing physio without the knee stiffener. But she is not fully aware of space and time and not standing without support.
Sunday Mar 9 8 pm: Two years not biting on food must have weakened her gums, causing bleeding. Oral hygiene so important as it affects throat and chest congestion. Also developing bleeding corns on her feet.
Monday Mar 17 10 am: Vertical tolerance on the tilt-table strengthens the lower limbs and engage organ blood circulation, to eventually help her stand again.
Thursday Mar 27 8 pm: Week of fighting a low-grade infection. And a bleeding sore from poor pronation while standing. Battling in silence, today both problems are reducing.
Monday Mar 31 10 am: She looked at me this morning with regard. Slowly becoming a person again. But with other friends she could not make eye-contact, even family.
Thursday Apr 10 8 pm: This past week I had to ask for two miracles. The first was when the dogs attacked two baby cobras wandering in the backyard. After tearing them apart, mommy dog could not open one eye. Daddy dog had a swollen cleft with a lip puncture. He was not expected to live for half an hour. The vet agreed at his age of 10 years it is not worth matching blood for the antidote. So at home I waited for his septicemia collapse. It didn't come. After 3 days without food and shallow rapid breathing he slowly recovered. That was the first miracle. The second is for Miranda. I'm still waiting...
Wednesday Apr 16 7 am: When she saw me this morning there was a soft cry. Have been trying to get her to say something past week. Fighting bed sore.
Good Friday 8 pm: The mind freezes after a prolonged period of sadness and anticipation. Came up for air today.
Sunday Apr 27 10 am: Have been working on her space/time cognition on the tilt table. More could be done there. But she would not swallow anything else except up to 80 ml of coke. She hates milk which is being fed directly, about 2 liters daily.
Sunday May 4 8 pm: Last night she tried - opened her mouth - but no words were uttered.
<End of Posr> Next - Glimmer
Valentine's Day 10 am: Was it just coincidence when she opened her mouth when I was about to brush her teeth? Or raise her head when I told her to? No way to confirm.
Sunday Feb 23 9 pm: Impasse - still little progress on her sense of space and time. But she'll look at visitors who talk straight at her line of sight.
Saturday Mar 1 10 am: Still unable to swallow well for a meal. Will have to live with the feeding tube for a while longer.
Friday Mar 7 11 am: This morning very encouraged by her ability to do her standing physio without the knee stiffener. But she is not fully aware of space and time and not standing without support.
Sunday Mar 9 8 pm: Two years not biting on food must have weakened her gums, causing bleeding. Oral hygiene so important as it affects throat and chest congestion. Also developing bleeding corns on her feet.
Monday Mar 17 10 am: Vertical tolerance on the tilt-table strengthens the lower limbs and engage organ blood circulation, to eventually help her stand again.
Thursday Mar 27 8 pm: Week of fighting a low-grade infection. And a bleeding sore from poor pronation while standing. Battling in silence, today both problems are reducing.
Monday Mar 31 10 am: She looked at me this morning with regard. Slowly becoming a person again. But with other friends she could not make eye-contact, even family.
Thursday Apr 10 8 pm: This past week I had to ask for two miracles. The first was when the dogs attacked two baby cobras wandering in the backyard. After tearing them apart, mommy dog could not open one eye. Daddy dog had a swollen cleft with a lip puncture. He was not expected to live for half an hour. The vet agreed at his age of 10 years it is not worth matching blood for the antidote. So at home I waited for his septicemia collapse. It didn't come. After 3 days without food and shallow rapid breathing he slowly recovered. That was the first miracle. The second is for Miranda. I'm still waiting...
Wednesday Apr 16 7 am: When she saw me this morning there was a soft cry. Have been trying to get her to say something past week. Fighting bed sore.
Good Friday 8 pm: The mind freezes after a prolonged period of sadness and anticipation. Came up for air today.
Sunday Apr 27 10 am: Have been working on her space/time cognition on the tilt table. More could be done there. But she would not swallow anything else except up to 80 ml of coke. She hates milk which is being fed directly, about 2 liters daily.
Sunday May 4 8 pm: Last night she tried - opened her mouth - but no words were uttered.
<End of Posr> Next - Glimmer
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