"She's Gone Ahead"

Forty one years ago a 27 years young man met a 28 young lady on a tennis court. It was a potent match. The friendship never started until more than a year later. So in 1977 I thought "well, she's gone emigrated to Canada and I'll never catch up." I continued to live my single life searching for purpose and direction alone. I was wrong then. By a determination to see the other half of the world I caught up. It was only coincidental that I pursued a tertiary degree in a State separated from her by Lake Michigan. Thinking back it seems funny - I didn't really have to chase her, just being nearer to where she was. There was no internet or email and postal strikes were common. When we finally linked up in 1979 she had gone one step further in life - her PhD - a huge life goal that now, looking back, seems insignificant. But I told myself again then - had to catch up. So I did, again. Then 30 years of marriage began with her returning home in 1981, leaving me behind. Catch up! So I did, returning 1983. Then she started a distinguished career. It started small, the research unit part-time while still lecturing full-time in 1986. She quickly overtook my research budget. Soaring ahead we had such wonderful experiences together, traveling, boating, climbing and laughing. But I was trying hard catching up with her social, physical and professional life. Then she eclipsed me. All I can say now is "She's gone ahead". See you again?? when I catch up - whenever and however that will be.

"I've no academic standing, just a lowly painter, but if someone's drowning, I'll certainly save." - Volunteer group of Japanese who painted Sugihara House in Lithunia, in memory of Chuine Sugihara, who was castigated by the Japanese government for issuing profligate transit visas to thousands of Jews facing certain extermination at the turn of the Third Reich.

"See the two soaring cranes pictured in our sitting room? You can be the higher one - I just want to be the lower one but going further ahead" - Miranda 1984, soon after we settled back at Jn Hitam Manis.

Straits Times October 14 2018:

Never miss a chance to get close to those closest to you. They will always be sorely missed.

Ownership

Those of us who submit willingly to the wife may not begrudge we don't control our life as much as when we were single. On the average we only have half our lives and we live swimmingly along. Call it sheer force of habit, pleasure or just laziness, men often abdicate, or relegate much of our thinking and decisions to the soulmate. Then comes death. Suddenly you get your half back, sooner or later the realization sinks in. I now know that in order for the bereaved to go on, one must take ownership of the half that is returned. It is as painful as it is surreal. This might sound like a riddle to you but getting over a loss depends on how well one gets it back.

1 Dec 2017: All at once you are solely responsible - your food, money, welfare and what else - no more is that someone to turn to do it together.together .

13 Dec: "Loneliness can kill" - that headline shocked me. The article suggests that as much as we need to be on our feet at least half-hour each day we need to also have intimate or close interactions with person or persons. Failing which it is feared that our brain like the cerebral cortex will start to shrink. The downward path to death starts with a weakening of our psychological resistance to illness. Frightening?

14 Dec: Sex and one's need for it is often shrouded with shame and distaste. What is a widow to do? Dirty old man! Is there an excuse for elderly promiscuity? Any wholesome activity for its substitution may not be enough.  But a psychologist clinician has once said that the brain can be a sexual organ (???)

18 Dec: This journey gets lonelier as one by one people you know gets off. She once said in our first letters life is like a bus. As others leave we ride on. Until it's time for us to get off too.

Christmas Eve 2017:  Gender reversal of testosterone and oxytocin deficiency - these are the two factors harming marriages today. I now know this a decade too late. When the wife is eminently successful and the independent leader over the husband, her testosterone dominates and discourages him to depression. And the absence of pleasurable oxytocin doesn't help.

New Year's Eve: The dead and dying year passes and the unknown, fearful or not stands at the threshold. What a wondrous world! If only we're still alive to share it.

11 Jan 2018: Half awoke, I thought she would walk in the door as before, after a long trip overseas. But no...shes gone.

The little joys of life are not missed until you are bereft of them. The company of friends and food, soft oldies playing in background, shrieks of children at play or the yelps of excited puppies - how have they all melted into nothingness. Even the rites of Christmas, the quaint atmosphere of New Lunar Year, once were necessary tolerances, aches in memory.

10 Feb 2018: If I had known that I will live the most vulnerable years of life alone without my wife I rather might not had married her. But then there are others who had to endure their spouses all their lives to old age, instead of treasuring the companionship. Such irony.  Food for thought. For everyone, married or not.

So be thankful for the beautiful memories, accept your present state as the best and making out the greatest we can be. True or am I kidding?

14 Feb 2018: So in 3rd century Rome St. Valentine spread love among Christians, not necessarily lovers which only became vogue in 14th century England. And chocolates? The cocoa effect is a modern discovery whose trading stocks might be suspected to date to the saint.

5 Mar 2018: Just had a brutal week. When you have to face life alone any tragedy feels so hapless. Had to face a burglary alone.

15 Mar 2018: How do you shake off a groggy sense of loss and the doom that death is now coming for you? There must be sunshine one day...

17 Mar 2018: Pushing 70 and the passing of people in their eighties, some in the seventies, I came to the grim realization that there's only 10 precious years left in life. Even more precious with each day. How can one be brought not to live these years in despair and gloom, in the midst of disasters, no matter how grave?

20 Mar 2018: People. When distressed and alone you need them to stay alive.
The most severe trial of your life plummets the soul for survival. However disturbing an accident or robbery, you will not succumb, because you've gone thru the worst - the death of a very loved one.

"Gratitude even in times of overwhelming adversity - you'll find great strength" - Yutaka Sado,  conductor

"Live a life that compensates for the sad fact of our mortality" - Tsuruko Hanzawa, Chaji practitioner

6 Apr 2018: By God we have what we want and only so. Life with your spouse or family, a pleasure that extends to old age are blessings from Him. Your deepest and most cherished pleasures, creature comforts - they only exist when given to you. But most of all God gives the Spirit of Life, Hope and glorious eternity. The unquenchable Spirit of renewal and promise.

22 Apr 2018: Swimming among sharks - when you grow old and alone you start to lose parts of yourself that kept you going as a human being thru the years. Losing job (identity), health (independence), care (protection) and love (well-being) you trundle along alone and vulnerable. All the more to network.

May Day 2018: Finally..finally it dawned on me - clear as day. Since the cataclysmic stroke on 01.11.2011 inside me I was like a child in panic mode. I grabbed on to anything for support - like the helm strings of Jesus as He walked away in the crowd. Since then everyday I was frantically holding on to Him - anything that will pull me out of grief and loss - anything that can help me see the Sun again, anything that will throw out the darkness and gloom of Death that visited me so closely. But in my frenzy I'd forgotten that seeking God is a relationship - not a constant childish hanker for relief and escape from distress. Sure anybody will respond if you seek him hard enough. But for me I'd forgotten the Face of Hope, the reassuring smile of Peace - the healing touch of OK. So impatiently I'd started to doubt and fume and complain - even shout disbelief. Then more troubles. Now I know the motive for loving your God with all your heart, mind and soul. That motive is His protection, care and Love, despite ourselves. I wish I'd done the easier way - talk to a Person, pleading and praying. Instead I'd yearned for magic or a charm that could suddenly promise relief. Maybe relief will still come but we've missed the personal God.

Next: "Gone Ahead"

Dawn

It is a wonderful part of the day. Little did I knew that the death of our loved ones can transform us like the coming of dawn. Birds still sing full-throated and flowers still bloom in droves. A new day. A new morning. Takes away the horrors of the night and dreads of yester-years. To live to the completion of our lives - fully, whatever it takes.

7 Jul: But life must be rebuilt - from scratch.

"As the dogs look to me as their universe so I look to God as mine - The Restorer and Sustainer"

Two goals for an aging warrior: a). Frequent meditative introspection to slow down and restore mental health and b). Adapt to physical change, which may certainly come suddenly or gradually.

"Surviving babies grow up and leave me behind and that's great. Only those who didn't remain with me." - Ikuya Ueta, pediatric surgeon

The response to "What's the meaning of your life?" will surprise you - its meaning is clear when you're prepared to face the end of it.

25 Jul: Can't believe it. Still in recovery from the shocks of last 5 years, slowly starting to think & feel normal - to get hold of my mind again.

"Master your feelings without wavering, and follow the path for you to the end" - Shiro Masuda, Master carpenter
"Eat and enjoy, it is your wish to the world that you want to live another day" - Hajime Yoneda, Master cook

25 Aug: Happy birthday! You'll never be older than me again 😥😚😃😅😉😍.

It was a surreal dream - met her and her mother together in their heavenly bodies. So young and new both so cheerful. The only word to describe them - young again!

1 Sep 2017: It will be 6 years from the fateful Thursday. Only memories now. The worst one can do in an estranged life is to wander aimlessly like a disembodied spirit. The mind must be uplifted by whatever means. To quote CS Lewis on his mother's death, "all settled happiness, all that was tranquil and reliable, disappeared...there was to be much fun, many pleasures, many stabs of joy; but no more of the old security. It was sea and islands now; the great continent had sunk..."
When I decided to marry I didn't realize all these were not vouchsafe. The emptiness still assaults every morning. I cannot sing with any conscience that "God is good, all the time." How?, when the terrors of separation from your closest love turn off the lights in every room.

10 Sep: Today I discovered that to overcome abject loneliness God must be in my heart - not just seeking Him at church or fellowship with believers. We thot keeping busy will blot out the empty space, but no - it's who do you replace in the void that's real.

18 Sep: First her stroke, then one by one the dogs failed heart-broken. Then the lonely struggle for recovery that never came. Finally her lungs failed. When will the process of desolation end? Even self destruction threatened with the accidental death of the most stalwart dogs. When will grief end?

First my parents.
But I accepted their deaths because they're older.
Then my friends.
But I accepted their passing since friends come and go.
Then my dogs' grim days.
But I accepted their shorter lifespans.
Then my wife vanished from earth without a final word.
And I struggled with it alone.
Finally it'll be me.
And there'll be no one left to accept it.

21 Oct 2017: "Itch habe genug" - from Bach's cantata Feast Mariae Reinigung (1727) of Simeon the elder. For most of our lives we carry the burdens - out of duty or probity. But at some time or other, like Simeon holding the newborn Christ in his eager arms, say that we've lived long and have enough.

27 Oct 2017: There're so many things I had wanted to do with Miranda, but I  didn't know that she'd leave so quickly. Today I'm told that to live on with our departed beloved we should build on our memories. I still remember lots of it - treasures.

12 Nov 2017: Since her absence I face demons. The evils of giving up and constant discouragement. But I'm reminded of her life so filled in time and space that there is never any option to quit. Climb every mountain, fork every stream- keep climbing until your last breath.

17 Nov 2017: The dragonfly always moves forward and never retreat. Those who live for the moment lives forever.

20 Nov 2017: So now there's the devil of widowhood and the deep blue sea of death which some may say is better. The latter is further from the truth. However the pressure to fight loneliness is fraught with pitfalls. Each day is ticking closer to the end and life is ever shorter. So I remind myself daily to proceed with caution. A widower attempting a reset is like a rocket making reentry.

"I'm still not ready to walk alone. But that I walked at all on this perilous journey...depends in a large part I received...for 30 years as one leans on a towering tree of the forest" - Philip Yancy 2009, In the Likeness of God (p23-26)

<End of post> next -- Ownership

"They also serve who only stand and wait." - John Milton (1673)

Epilogue

There's nothing more to report Miranda's recovery so this blog ends. But we the readers live on. At the beginning I resolved that this catastrophe or any other personal tragedies not remain so - maybe we can turn it into a positive blessing to our lives, So what can I or others learn from a sudden death of a spouse? These sleepless nights many what-ifs floated in my mind.

Why only today do I long to be nearer and closer to treasure this blessed soul when she was around?

How can I redeem many years of neglect from now onward?

Maybe there will be others in the routine and busyness of life have gotten into personal neglect of each other - could there be an insight to gain and work on henceforth?

How can I honor Miranda and her values instead of regretting the past.

Are there any mirandas out there? Can we value them more? Can their soulmates make them happier now when she's around?

Will this be useless in this blog? Should this discussion continue? I am not sure. But I am trying to heal and the empty void is big and getting heavier. I need help. Maybe others too in future.


"While she was alive I fasted and wept, thinking who knows? The Lord may be gracious to let her live. But now she's gone can I bring her back? I will go to her but she will not return now to me. And David got up, cleaned, worshipped and ate."  - 2 Samuel 12: 22-23 (adapted)

Postscript: It has been cathartic to write "Private Thoughts" during the darkest days of my journey - now released from embargo. God used writing to keep me off the edge of insanity. Even now in the process of bereavement I've kept the personal struggle going in its update. One has to muddle through the woods of deep personal separation. Hopefully one day I can look back thankfully to have made it. Maybe others too.

Four Years Hence

                                           "There are no U-turns in the highway of life."

The surgeon remarked that nobody in their right mind should expect a comatose to suddenly wake up and walk after 2 years. But I take heart in the word "suddenly". So we should be thankful that she did gain some wakefulness since then. I sometimes ask myself: What if I'm the one sick and she's taking care of me? She would be still traveling the world for BTI. Her question would be "Now what can I do with Kian?"  But my question for these past four years is "What can I do without her?"

4 Sep 12 noon: Chest still congested - her breathing harder due to weakened lungs as a  result of catching that flu bug.

7 Sep 9 am: Losing control of her better right eye. Amazing the effects of seemingly harmless flu infection on a sick person. Hope she gets better

15 Sep 9 pm: She did get better, except for the croupy cough. However spasms has now reached her arms (good sign?). Her arms were the least progressive to recover. Then the lazy eye - like a bedraggled doll with a disconnected right eye.

23 Sep 12.30 pm: Her throat irritation persists - probably the haze effect, even in the air-con.
Did anyone see it coming ? (Photo credits to MGS annual reunion group)

2010

2009

2008

1 Oct 10 am: The groans have returned but the haze still a problem for the throat. She's chugging along.

10 Oct 10 am: Breathing still laborious but there're other problems such as blood circulation. Humans are not meant to sit all day.

13 Oct 3 pm: Since she caught the flu months ago her signs have regressed. Eyes have been mostly closed and legs were no more active. Surgeon said it's the usual atrophy of stroke.

14 Oct 8.45 am: Miranda has gone home.
^^  ^^

End of blog. <Pillar restored>

Requiem:

A most gentle soul, generous and kind to a fault, always so sensitive to the feelings and needs of others, brilliant and sharp. And her persuasive convictions belie her gentleness. I am so privileged, often undeserved,  to share her 33 years of life.

Thoughts from all your condolences and messages

As her absence lingers on with a heavy empty void, words of your condolences hit home - that even though her journey to death seems like a failure, now it has all been worthwhile. To endure the dark days of her survival and restoration - the almost horrendous first few hours of hemorrhage, the long dreary nights and days of alleviating her discomfort and coaxing her back to the world while watching her tremendous assets slide downhill gives me an impetus to continue living. When all this wake is over let it remain as a treasure our remembrance of Miranda's legacy never to give up whatever dreams yet unfulfilled - be it personal, for Singapore or for society as a whole.

Above all, with compassion, startling kindness and generosity. The human qualities that endear Miranda to all. She's been an example to me ever since I knew her. Keep the flame burning...

Cheering the Right Brain

"Oh dear I can't find your left ear!  Don't tell me the surgeon...", I exclaimed as I struggled to plug the left audio on her. She gave a faint smile. These days there is nothing much to do except to cheer her up as just looking at her deformed head can depress you. I also found that care giving out of coma must always find new activities - just like a child developing her faculties all over again. Take music and humor - they are universal that a vegetative state might even relate. Music have been known to make plants and cows happy. Then there is a need to promptly help moving the bowels at consistent times of the day. Important to re-develop primitive functions of living. Becoming creatures of habit again is so vital to our cognitive well-being. I'm hoping the posts can become more cheery. Despite the truth.

15 Jul 6 pm: Probably entering a difficult phase - she's groaning often out of frustration and there's absolutely nothing one can do or even understand the words. Sometimes I try to avoid her because it seems harder to stay and feel hapless. Even the maid had to sleep in the hall to escape the nightly complaints. But so nice to see her doze off - sometimes up to 24 hours.

25 Jul 2pm: So the prolonged periods of sleep and stupor is due to hydrocephalus, a potentially damaging condition of excess brain fluid. Now watching and pray that the shunt will do its work of balancing the flow. Had previously reluctant to have the VP shunt inserted.

14 Aug 2 pm: Two weeks of chest congestion after catching flu. The medical review today threatens early bronchitis. Could be fatal if not watched for infection.

25 Aug 9 pm: She had always been remembering birthdays of family and friends organizing dinners and gifts. Have a happy one today! Miranda!

(1953)

31 Aug: Still visitors should be protected from her coughing and chest congestion.

<End of Post>

Tough Love

"Have we given our all against a relentless storm? Have every oarsman broken their backs as they strained  to steady the stricken ship? On and on the endless days riven against rocks, bitter wind and biting rain. The spirit tested to submission by the giant waves, but unyielding to the last breath the tempest must be stood. It must pass and we will overcome." (YKT - Collected words)

"Go on - cough it all out!", she stated firmly to her father retching away in his last days. Those days were triple duty for her - starting a new Institute, lecturing and teaching at the University and shuttling back and forth caring for her father at the convalescence center, besides friends and church. Then when he expired there was visible sadness but she turned to me saying softly it was probably best for him. She would even do the same for my mother! Over the years we survived at least half a dozen dachshunds - all equally dear as children to her. One time Hucky was slipping away age 20, being unable to recover from a festering wound. "Hucky, if you have to die, please let it be this week, because I'll be traveling soon..." That night Hucky expired in her arms. Charis, Sweetie, Sassy, Strauss, she had never let anyone go except in her arms. Then she'll say to me, "Death seems so final..." But everyday I keep thinking - what next can I do for her? How can I make her move her eyes and head? How can her weight transfer be improved during physiotherapy? She doesn't like to stand so can the maid, who is a shoulder shorter, do more to stand her (she's dead heavy), or where else can I take her around the house? I understand a team of doctors, specialists and other luminaries met regularly how to keep Singapore's icon (LKY) going as long as practicable. But for Miranda I am the team. When things are left status-quo, she will surely slide downhill. Comfortably lying in bed is her worst enemy - limbs and lungs weaken with lack of use.Then someone might wonder whether does Miranda really need all these? I do.

 2009: Pi was the "smartest" dachshund on this side of the globe. Her death in August affected her visibly in 2011. Infected by dirty water.
1 Apr 2 pm: This blog is about her - but I am sustained by prayers how to keep a sane mind. Really kept by the concern and prayers of many who read this blog. Inexplicable sadness makes one want to hide in a cave forever. God must not intend for us to have prolonged sadness. His plan for eternity is quite the opposite.

18 Apr 10 am: Getting stronger and harder to resist her tone during physiotherapy. But she must have given up trying to speak. Maybe later.

30 Apr 6 pm: She will look at you if you speak - she had never been able to engage her eyes before. But with no feedback you cannot tell whether she understood you. Only then will the rehab hospital admit her. Even the speech therapist will be doubtful of her swallowing.

31 May 12 pm: End of Post, No changes until the Next post

Steady State Vegetative

No man is an island, entire of itself; every man is a piece of the continent, a part of the main; if a clod be washed away by the sea, Europe is the less,...any man's death diminishes me, because I am involved in mankind, and therefore never send to know for whom the bell tolls, it tolls for thee. - John Donne (1839) 

Hearing of someone succumbing to coma made me realize that Miranda's days are numbered.  Longevity does depend on our conscious brain pushing the entire body along in health. But what is the point of those vegetative years? That's a hard question. The easy answer is that long illness, at any age, is not uncommon and arduous experiences may be long-term good. But that is not an answer if, all of a sudden, it happens to you. On hindsight some may prefer abrupt termination, such as in an aircraft crash. We do not live life based on hindsight. We cannot. But it is vexatious to us who left the door ajar in the faith that God may do a miracle. We cannot turn the clock back on a bad outcome. I can't escape the occasional guilt that I perpetrated her current zombie condition. Damned if I didn't proceed with her life-saving operation and damned if I did. But the former would have haunted me the rest of my life wondering  "what if?" No choice - just keep faith. Then as our lives get drawn down with time, keeping faith is getting harder.

Saturday Jan 31 9 pm: Today is just like any other but it would be 34 years we have been together. Getting more sunshine, and vitamin C for her skin blisters...

Friday Feb 14 3 pm: Blisters all over - is it Bullus Pemphigoit? The open sores should avoid visitors. Quite rare, attacking sick elderly.

Wednesday,  Lunar Year eve: So Miranda was warded yesterday at Skin hospital with bleeding welts over a third of her body. Awaiting results of blood test and skin biopsy. Cradle bed care for possibly a week.

Monday Feb 23 3 pm: Her numerous scars were starting to heal and allowed to return home from cradle bed care. But one week of lying in bed means she would have to restart softening her rigid limbs again by physio. Lost 4 kg of fluid.

Friday Mar 6 1 pm: So tests confirm Bullus Pemphigoit,  but 1 week of hospitalization had weakened her considerably. Back to the hard work of strengthening her posture and breathing. The review today shows she has to fight the autoimmune disease for another month.

Saturday Mar 14 1 pm: Her skin condition prompted a daily dose of sunshine daily, when for the past years she had been convalescing in the air-con shade. Tried to excite her for all the warm felicitation of her 25 years work at BTI, but I doubt she even recognize herself in the photograph. Maybe next time.

Saturday Mar 21 7 pm: I think she's happy to be surrounded by people although I cannot verify. Her inability to speak greatest source of sadness.

Friday Mar 27 11 am: We buried Skipper today. With Pi he had been Miranda's constant companion at night and had been confused since her stroke. Both had bled from the stomach - Pi had amoeba infected dishwater and Skipper a ruptured tumor. I brought him to say goodbye but she was fast asleep.

<End of post> Next:  Tough Love

Groaning, Talking, Frustrating

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

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

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

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"

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

Rejuvenating and re-inventing

Another year ends.
These days I keep asking the question: How can one turn a catastrophic ordeal to positive advantage? Despair, hopelessness, fear and abject loneliness is not far away, even if one can mask them with friends. Mental toughness in our inner world comes from rejuvenating, renewing the mind and re-inventing oneself. How can grief be good? I remind myself that there may be better and nobler enterprises in the future ahead. And focusing on a new outlook with ideals that kept hopes alive before. Sure, creatures of comfort and habits hark back to fond memories with ones we missed. Makes us human. Rather than rake up the sadness move on and not before discarding past plans, dreams, comfort-zones that have became irrelevant since the disaster. Sometimes starting with a blank new page may be a positive thing. Miranda is already doing it - learning to stand, swallow, look into people's eyes and receive facial cues. Ironically, between us she was the spark of life. Life's surprises. To only wish for the pleasant ones is to bury our heads in the sand. Have to dig deep inside - a journey lies ahead. Live on.
                                            "Straighten up and fly right!"  - Nat King Cole (1943)

8 pm: Yesterday she looked into my eyes, eyes large as marbles.

Monday Dec 23 9 am: She looked well today, sparing me from becoming odious to the tedious routine of cleaning and exercising.

Christmas Eve 4 pm: She must have also felt the cheers from so many visitors - eyes focused when we look at them. Have a Blessed Christmas.

Christmas Day 9 am: Last night she started uttering gibberish, but only for a while. Speech mountain - pray conquer it.

Boxing Day 10 am: As she looks today. (Permission to post this not clear but it looks better that past photos not posted)
"My faith in you seems gone like a deflating airbag, for all my longing"
"Alone from my friends and companion, who will again endear herself with me like before?"(Ps 38: 6, 9-11 adapted)
"For He knows the secrets of the heart and flesh" (Ps 44: 21)
New Year Eve 8 pm:  Must have caught a cough from me. Where has the year gone? If she wakes up tomorrow she'll not remember as Sleeping Beauty or even Rip V Winkle, with half a brain.

Monday 6 Jan 8 am: Still fighting chest cough problems. More vocal sighs.

Friday 10 Jan 9 am: Eyes still locked left in coma, unable to respond. Still coughing 2 weeks now.

Wednesday 15 Jan 4 pm: Cough almost gone so is tone under medication. Now I avoid crowds and bringing home infection. She's also more vocal but not communicating.

Wednesday 22 Jan 9 pm: Yesterday she was clearly groaning in frustration - not gibberish. Miranda is not the kind of person to complain. But it was heart-rending to respond to her. Sleep is probably the best thing for her (and me).

Sunday 26 Jan noon: Maid off and alone with her, have to creatively stimulate her consciousness. Like dripping juice off a mandarin orange - her delight during Chinese New Year.

Tuesday 4 Feb 1 pm: Able to turn head right instead of locked left. Looking ahead. But still not aware of space or recognize her friends or family.

Monday 10 Feb 4 pm: She deserves better care than what we have been giving. Because we've forgotten to talk to her enough, having been more awake lately. And to clear chest fluids constantly by turning. There is this new concept of care-giving - the "humanitude" approach. But cannot expect too much of hired hands.

Thursday 13 Feb 11 am: More responsive in facial if visitors talk to her and encouraging head turning. Must continue with voice stimulation, although her limbs and vocal response do not seem to be progressing.

< End of post>  Next: Surviving

The Fight

The will to live. Ever more so needed in illness and aging. Our parents' deteriorating will to live eventually led to their demise. Francis Shaeffer with his Christian values of Eternity said in effect fighting Death to the end is the celebration of life. Any doctor can tell you it is indispensable to complete healing. You can see it in Miranda's eyeballs. Sometimes they will flit side to side as if the brain is trying to calibrate itself. Other times you can hear her uttering softly. But for now she does not engage anyone facially. You cannot tell what makes her comfortable as part of her will to live. I just found out that a mere change of pampers can reduce her catatonic fit. Our doctor friends says she will be vegetative for life. Do I just take this prognosis and give up on her? Sometimes I just feel like I'm wasting all my effort and time. Might as well let her die in September 2011. The reason why she is still with us today was not to close the door on God. Only time will tell - whether she will increase her awareness to a meaningful stage. True, in the face of acute pain or debilitation logic becomes irrelevant. Must encourage her to go forward. Same for all of us - to find the light in the tunnel for ourselves, no matter what. Die climbing!

5 pm: I behave so childishly - to gain her attention. But failed to have her focus.

Saturday 20 Oct 8 pm: I can still remember those late nights when she, hunched over the laptop, ipod over her ears, singing hymns off-key to herself. So I made sure she still has the ipod joy on her at night.

Thursday 31 Oct 9 pm: Discouraged into silence. But I am encouraged by her acceptance.

Tuesday 5 Nov 8 pm: Head turning more to the right and looking straight, but eyes not focused. She still has no awareness of surroundings.

Sunday 10 Nov 5 pm: Today it seems she can recognize my voice - about time because for two years I've been talking to her.

Tuesday 19 Nov 1 pm: Defeated today. She gets those fits of tone stiffness that does not allow her eyes to relax and focus. Have to watch her progress carefully.

Monday 25 Nov 9 am: There's a constant frown on her face for over two years now. Must massage them off her face.

Tuesday 3 Dec 5 pm: So these days I tried to excite her into making a sound - any sound. But none of the utterance are meaningful. Wakefulness is now longer - but that is not the same as consciousness.

Friday 6 Dec 10 am: Another of those distressed moments when she cries in pain but I do not know where to look. You mothers out there somehow know where when your babies cry. I don't have such instincts. Maybe stomach infection.

Wednesday 11 Dec 3 pm: So it was. All 3 in the house had the runs. Cross infection from the air. But now shes better, minus the left brain.

Tuesday 17 Dec 11 am: Survived a week of battling many fronts. She must fight off any infection from mosquito bites and I must recover a bout of gout. Her eyes continue to focus left.

<End of post> Next: Rejuvenating and Re-inventing

On thin ice

Staying well alive. This has become even more imperative these days. Someone said that if you damage your right leg make sure your left remains working. Because one slip from the wounded knee during physio would hurt both Miranda and myself. I once fell off the chair half-asleep, causing her to bump her head on the wall. Each day the challenge is not so much having her improve but going through the grind without mishap. The days seem endless. Its been exactly two years.
Of course the faster she improves the better. The task is to decide what to move forward. Anybody can just leave the daily routine, and everything else to the maid - she is more than satisfied not to do more than the easy things. It takes courage to break new ground - making her swallow reliably than just live on the feeding tube, or stand on both legs well enough to reduce the constant support she needs. Every week I ask myself, "What more can she do than what she can now, or what shall we try next?  Improve cognition? Or memory, or arm flexure, speech, whatever." It is easy to sink to oblivion and let life fossilize or fade away. I know Miranda will not have it. And then there are daily voices tormenting me to ask for a miracle...

8 pm: When I said her mother passed away peacefully on Friday there was no visible response. After those years listening to what she said of her mother I felt like she was right there with me at the wake. Strange.

Thursday 5 Sep 1 pm: Today I still cannot imagine - a live wire gone cold. But knowing she appreciates good food I tried feeding her a tasty soup for coke. And she's really gained weight when I made her stand on the scale. Standing exercise must have increased the bone-weight. I'm glad my legs are not weaker.

Wednesday 11 Sep noon: She looked so normal this morning, except for her deformed left brain.

Sunday 15 Sep 10 am: Her legs are stronger, being made to stand half hour daily - the minimum that a normal person should. Now to the arms and hands, hitherto little progress there.

Saturday 21 Sep 10 am: Eye contact - need more of it to revive her cognition. Visitors should try too.

Thursday 26 Sep 10 am: When her cognition returns, ever so little, so will her emotions. It will be a challenge. Yesterday when she looked at me I thought she cried. I too.

Friday 4 Oct 5 pm:  There's nothing more to do except to wait. Its the brain - all the other organs seem normal. Exercise keeps them in shape.

Thursday 11 Oct 10 am: Limbs catatonic - the positive view is her brain is trying to wake up to the motor sensors. The bad is that her brain is now unable to control her body. Her sleep cycle is also reversed.

< End of Post >   Next:The Fight

Memory

Memories can hurt. Just ask anyone who has recently lost a loved one. Every relic of the past are reminders - not mere objects. I live with it everyday - golf clubs, shoes on the rack, wardrobe, knick-knacks, books, toothbrush etc - everything she had serves as memorabilia. Every journey I take, such as the usual supermarket, the homes of in-laws or annual trips remind me of past events. But now we are dealing with Miranda's memory. Our memories define us. From birth everything we learned formed our basic cognitional skills. Then as we grow our personalities were built on it - what we retain and what we learned to forget. Her brain is damaged. Does she have a basis for recognizing faces and making simple conversations? She has yet to regain meaningful use of her limbs. What is her sense of space and time? Her eyes does not track in a meaningful way when we talk to her. Most of all, she does not convey what she wants or need or give feed-backs in any way. Everyday as I minister to her needs I get a blank wall. Nobody knows what is most comfortable for her - except when she shows anguish in her coughs and heavy breathing then we know that she needed help. In short, how do you give proper care to a coma patient? I don't know how. And I'm supposed to have given her care for 20 months now. All this time she was not the Miranda I knew - she was a non-person so to speak. Yet sometimes when I look right into her eye, I get the feeling  that she knows me.

 "O Lord turn and have mercy...change the natural order of things by your miraculous healing power, just as You did as recorded in Your Book"
"Memory is the slender thread of our civilization" - Oliver Stone 2013

11am: Eyes continue to look restful although only 3 hours' sleep. Has been putting on weight - feed reduced.

Tuesday 18 Jun 7am: Today her eyes neither seem to want to connect nor respond to me. Must encourage her will to live on. A difficult week of stiff tonal muscles and heavy breathing. Been a challenge to exercise or even to bathe her. But later in the evening her look improved, even turning to her right and tone normal again.

Friday 21 Jun 3pm: Even as Singaporeans retreat to their air-con burrows in this haze she's still coughing indoors. But at least she's coughing (and sleeping).

June 22 8.15 am: The only time you can look at our precious Sun, the Red Star, with the naked eye at PSI 179. It was 10% smaller than that at the same time the next day with PSI reading 79

Monday 24 Jun 3 pm: So the medical review today resulted in shunt adjustment to reduce flow because of the sunken skull. She is classified "vegetative" due to thalamic damage in her mid-brain. Pray that the thalamus will heal in time (the neurosurgeon thinks it is usually permanent damage but concede that slow eventual healing is possible but a miracle) so that she will begin to respond to stimuli of sound and touch. Only then will meaningful rehab can start.

Saturday Jun 29 8 am: I don't care what the doctor said - for me Miranda is responding in a very slight emotional way, through her eyes, for now. And she will improve, God will heal, albeit very slowly.

Haze on the sun same time on 30 Jun psi 31

Wednesday 3 Jul 2 pm: She is still not able to direct her eyes to external stimuli. But I can sense emotion through her eyes when looking directly at them.

Sunday 7 Jul 9 am: She was catatonic despite the bacclofen, Today's physio was hard, but she stood well on the exercise.

Thursday 11 Jul 8 am: Her eyes seem to move in and out of focus, as if the brain's on some neuro-leptic drug.

Sunday 14 Jul 8 am: Another hard physio session of stiffness, despite having bacclofen an hour earlier. I'm tired. Either increase to therapeutic dosage and risk drowsiness or abandon it altogether.

Wednesday 17 Jul 8 pm: Despair at her not being able to turn to my attention, yet when I feed her a spoonful of coke I could see satisfaction in her eyes. Her throat must be really dry as she's not able to close her mouth during sleep. Just found out the reason for all those chest congestion - poor oral hygiene. Now I've become a strict oral hygienist.

Monday 22 Jul 9 pm: Continued to turn more to the right. Good - waiting for eyes to focus right side. Her tone getting rather stiff despite medication. Want to believe that maybe her brain is trying to recover. After doing physio on her I might need one myself!

Sunday 27 Jul 5 pm: Still waiting for her eye to focus on her right side. Proper brushing to teeth have led to less phlegm and throat congestion. I didn't know that for over a year now.

Friday 2 Aug 10 am: I like to report that she can stand supported for up to 25 minutes if she slept the night before. But nothing about her memory returning.

Sunday 11 Aug 11 am: Just to be sure that people don't optimistically mistake that Miranda is standing up on her own, I've been carrying her on her toes for the last 3 weeks. Sometimes she collapse and I with her. I now appreciate what the neurosurgeon said that she is still vegetative and will remain "unless a miracle happens". I wish not to say this again by ending the blog here.

Sunday 18 Aug 10 am: Continuing to make her stand should improve her motor memory, despite my wounded knee. Then when all seemed lost comes a silver lining - I could feel her toes move. But that was yesterday.

Sunday 25 Aug 7am: Happy Birthday! Still no sign of memory to recognize her well-wishers. May God continue to heal - progressively, no matter how slow it seems. And farewell NUS.

<End of  post - next: On thin ice>

Speech Mountain Re-visited

"When we get to heaven you'll be without your eyes and I without my mouth", she once mused about our respective faults. But ever since her stroke I long for her sharp tongue to return, even to say the simplest of things. Speech has got little progress - the latest is her tendency to sigh and exclaim or utter incoherently. Her hearing seems excellent, even accentuated by her lack of communication. But when we speak her eyes seem to show focus and the question is whether she understands but could not answer, or not understand as well as uncommunicative. It is not clear whether her damaged memory has affected her ability to associate words with meaning, or damaged her vocal controls or both. Right now, there is not even a channel for yes-no communication. So probably her hearing vocabulary is non-functional. Anybody's guess, because her non-volitional limbs are also not indicative of her desires nor understanding. Only her eyes blink. Yes, we've tried using it as a Y-N channel, but inconsistent. Hearing vocabulary is non-existent?

Thursday 4 Apr 8pm:  Last few days she appeared sad, so often I've to put on a brave face to cheer her. She's cheer-able.

Monday 8 Apr 10am: By looking at her eyes it seems she still cannot recognize her friends or other family. She will not turn her head to your voice and the only way she focus is when you look straight at her line of vision. Some way to go before she comes out of coma completely.

Thursday 11 Apr 1pm: Fatigue - thats what I'm fighting these days. But she sleeps most of the time.

Monday 15 Apr 11am: Is she coming back ever? I kept asking myself this question. Doctor friends don't think so - unless they are miracle believers. Meanwhile Miranda in her most comfortable state looks like a baby, unaware of whats around her.

Thursday 18 Apr 9pm: A small improvement - shes now looking straight and focus straight. Still making those unintelligible utterance softly.

Wednesday 24 Apr 11am: She looks normal. Especially after a good night's sleep. But her cognition is not coming back. Only for now I hope. There's also a slight infection.

Sunday 28 Apr 8am: Have not been able to make any new entries on this blog on her progress. Only significant new developments will be noted from now.

Sunday 5 May 9am: Could Miranda have been saved from this? That is the question I kept asking myself in the doldrums of her recovery. Could the aneurysm be triggered or associated with her onset of Parkinsons? If only she had an angiogram instead of cat-scan in 2009 review of her motor condition. We could have then seen the bulge and the demon would have been caught in a simple hourly radiography-intervention procedure. Despite the potential life-threatening angiogram, her family being neurologically predisposed (her father's stroke, her advancing dementic mother, etc) and the high pressure job - couldn't it have caught the attention of some luminary medical friend? I hear in Japan angiograms are routine procedures of senior citizens. But here I am watching water rushing under the bridge, holding the can.
Post note: There is a possibility that Miranda does not have Parkinson's at all, as the drug prescribed then (2009) did not have significant improvement on her motor response. Golf improved it. As it turned out the aneurysm dramatically showed itself while playing golf.

Wednesday 8 May 6pm: Surrounded by family and long lost friends last 2 days think I detected a smile. Friday 10 May: Cough and some infection. Visits avoid for now.

 Friday 17 May 10am: Still on antibiotics for her UTI. Mysterious leg rash disappeared.

Wednesday 22 May 8pm: So now the UTI has subsided, but the cough persists for almost 2 weeks now. Hoping the chest irritation is not serious. She has to learn the excise the phlegm and avoid any pneumonia which has grave consequences for bed-bound patients.

Saturday 25 May 4am: "Don't worry - just keep going and I'll meet you on the other side". Miranda used to talk about a father encouraging his young son on his first solo swim for a full lap. It must be daunting to brave the interminable cold water, thrashing all might for the other end of the pool to come into view. But then there was the smiling Father. If she had known that she will not be conscious again before succumbing to the stroke I'm sure she'll exchange those same words with me.

Thursday 30 May 10am: Just when I was giving up ever hearing any word from her she started uttering something. But her cognition is still weak and it is unclear whether she has any vocal memory.

Saturday 1 Jun 8am: She seemed to be able to sense urgency in conversation, like when I mentioned visiting my father. Hoping her awareness of the environment increases.

Friday 7 Jun 4pm: Making a slight progress of vocal utterance - usually a sigh or frustration or discomfort.

Sunday 9 Jun noon: So when I told her that father passed away last week she just looked straight at me unmoved. That is very unlike her, she is a most filial person to family members. At night her vocal cries continued. She's been fighting a chest congestion and fits. Back to Kepra medication.

Wednesday 12 Jun 10am: The anti-fits drug is making her sleepy most of the day. Still struggling with chest congestion. At 2pm there was blood due to trauma from the nasal-gastro feeding tube. It may or may not be the cause of all the phlegm and congestion from the throat and chest.

Friday 14 Jun noon: Her cough was reduced and hence she was able to sleep last night. Must watch for such infection. This morning was able to utter some sound and roll her eyes. Her verbal progress still slow - her neural recovery must precede it.

<End of post>  Next  - Memory

Thankfulness

What is there to be thankful for?
It has been one and a half years and it could even be seven, ten or what. Someone more than a companion - my best hope for a better life - gone. Since her stroke life is one of emotional privation. I wasn't even aware that I was fighting some form of PTSD (post traumatic stress disorder).  Memories of better times and thoughts of the foreboding future haunt everyday. Continuing with this thinking will miss a vital point - I must complete this journey. A positive mind will make it lighter, despite the realities.
First, this blog is something to be thankful for. Kept me sane. It cheered me to know even people from far away read for prayer or concern. All who care for Miranda makes me thankful. The myriad acts of kindness that I otherwise would not have. Her profound and catastrophic illness seemed like suddenly, something switched her off . But for me it has been sort of a rebirth.  Visitors - many strangers before, endue me with much encouragement, strength in ways I've never seen nor ever will in a spartan lifestyle. Their very presence than words are cause for thankfulness. Then there are the unseen blessings - many remember Miranda in their daily prayers. The struggle for her well-being is titanic because of all those lives she touched. Acts of concern and gifts of books, food and what else ended up with me. Thinking of it prods me on. Miranda helped too. Her thriftiness in savings enable me to cope financially, although she might have planned to eventually give it all away. She left me credit cards. Even her kindness to buy an insurance to oblige a friend came back to help, although she was already adequately covered at work during that time. Finally the dogs make me thankful - whenever they see me their tails wag unconditionally. Imagine for someone else who's not Miranda, with none of these blessings how much heavier is it to carry the bed-bound sick for what's left of life. Grim.

8am: Her head is turned forwards than locked sideways, but her eyes look blank ahead. Something is changing inside her brain? Pray that it is positive.

Tuesday 26 Feb 8pm: She responds to stroking on her left forehead by closing her eyes in pleasure. But I still cannot say she understands what I say.

Friday 1 Mar 8pm: Exactly a year and half - time Marches on. She's prone to look straight at me as if pleading a request. But no words and I could only walk away baffled.

Monday 4 Mar 10am: So I wheeled her around the house yesterday, hoping it will bring memories of her entire design, tiles and all. Maybe she will - in time.

Friday 8 Mar 2pm: I tried to cheer her by saying funny things and I could detect the faint trace of a smile. It is not my imagination, I hope.

Monday 11 Mar 2pm: I tried not to let her sunken skull intimidate me into desolation. She can look, even focus but no memory whatsoever of  people around her. She's not even attempting to talk nor move her limbs but she is in otherwise good health.

Friday 15 Mar 4pm: "You know, I've got zillions of things to do," she said with her usual high-energy voice. I was exceedingly glad hearing her voice again, and thinking she must have fully recovered. Then I woke up.

Tuesday 19 Mar 3pm: "You know, it'll be good if you can go play golf with me than letting me go alone everyday," I would say to her often before I leave. Then I would detect a faint smile from her face. But my doctor friends say that she's probably not following our conversations.

Friday 22 Mar 8pm: There is definitely some progress on cognition. When I rose from her bed I noticed her eyes tracked me briefly. And there was that smile again. I know her well enough to notice it. But I hope I'm not deluding myself the next time around. But thank God.

Tuesday 26 Mar 10am: She woke up with an exclamation, her voice slurring for quite a while. We might have to re-visit her speech mountain soon.

Friday 29 Mar 5pm: Her legs continue to strengthen despite still not able to swallow smoothly. She shows her pleasure getting to rest on the bed after the daily 3 hours from the wheel chair. At least that emotion is returning. 

                        Man's Credits: The Philadelphia Gay Men's Chorus (They sing well)
                         2009: The ladies' ensemble, Nathaniel Christian orphanage, Rumania

<End of Post>  Next: Speech Mountain revisited

Endurance

If hope is on one side of a coin endurance must be on the other.  Everyone must make his or her own journey through life, even alone. No matter how arduous or demanding sticking to the end is a known mark of character. No one knows for sure what is the end and Miranda must sail thru the doldrums that she's facing at her journey now - neither better nor worse. It is also our journey - for those of us who knew her enough to continue seeing thru her illness. Sometimes heart-breaking, if you know her former self. As for me she is still wife, although our marriage is all but gone. I still make one-way conversations with her daily. Hard part is not getting any feedback. But then steadfastness to continue living must be shared - the healthy or the happy owe it to the less fortunate. This post is not just about Miranda - it is also about us. In the end to be found standing, still. Despite our vicissitudes.

New Year's Day Noon: The maid's off today, so I have her all to myself. She looked cheerful, despite having only slept 4 hours. Maybe its the holiday spirit.

Friday 4 Jan 10am: Nothing to report except she's chugging along. Starting to strengthen her legs standing (with help). Pray that she can begin to say something meaningful from those sighs and utterances.

Monday 7 Jan 10am: One of the dangers bed-bound patients must watch is chest congestion and infection. She's having congestion lately and am thankful that she's learning to cough strongly. Even sneeze - but that's probably due to dog dander on my clothes. She's also due for her 6-monthly review.  When will she learn to swallow normally is my utmost concern. She's doing it but not fast enough for a meal and rid of the dreaded feeding tube which causes all those throat irritations.

Thursday 10 Jan 9pm: A week of fighting demons - one of self-doubts and depression and of chest congestion for her. Every physical disability (mine and hers) looms like mountains to climb. Have to dig deep inside.

Sunday 13 Jan 10am: Tried to encourage talk when she opened and closed her mouth at me. But no connection. The words failed. An indomitable spirit must stay afloat despite streams of endless obstacles. Like these days. Have to ride on wings of eagles (Isaiah 40: 31)

Tuesday 15 Jan 2pm: My wings drooped - seized by a sudden pang of nostalgia of long ago memories. This can be triggered by a lack of sleep. But Miranda rested well last night and does have a slight whimpering response to touch, although the eyes show little emotion.

 Then came Isaiah 45:5-10 today - "I am the Lord, there is none else...I the Lord do all things...salvation, righteousness..I created all things..."

Friday 18 Jan 9pm: I continue to interact closely as it is probably her only window to the outside world. Yesterday when I prayed her eyes seemed attentive throughout.

Wednesday 23 Jan 11am: Stable - better than getting worse. Progress painfully slow though. She's uttering more and eyes more engaging, although a sign of being comatose is her inability to track your eyes or hands. Now is the time to mentally interact more with her, unlike 6 months or a year ago, when there were many visitors but she wasn't ready.

Saturday 27 Jan 3pm: These 2 days her nystagmus was garish -  both eyes kept scanning in a wide arch from left to right as if uncontrollable. Maybe it can be a positive sign of the brain trying to wake up, but I'm more positive than my doctors dare to say. Then at 2pm her hand-phone which I inherited since her stroke reminded me of our anniversary dinner, an event she had booked for more than two years ago!

Tuesday 29 Jan 11am: Somehow she doesn't seem to look forward to my morning greetings as before. Her eyes glazed over instead of focusing. Must strengthen her will to live again. Maybe another day.

Friday Feb 1 11am: I hesitated to make this entry but I'm thrilled. Miranda turned her head and looked straight instead of locking left up to now. Thank God her nystagmus is not worse. Hoping that she continues to look straight or more right. If the mid-brain continues to recover it will be a huge step to consciousness. Her arms are still inactive and she needs to swallow better.

Tuesday Feb 5 11am: She continued her standing routine and I noticed she will look right standing. So important to stand as to give spinal feedback to the brain.

Lunar New Year 8pm: I had set up a disappointment for myself for being too optimistic. Her brain is taking its time to recover - she can see straighter but not able to track or turn to attention. But we must persist the more on her physiotherapy - standing on one leg and loosening her tone.  Now is the time to stimulate her brain as much as practicable. With no feedback, there's only that much one can say to her.

Tuesday Feb 12 9pm: Third day of Lunar NY and babies stimulated her most, by her looking at them. But her sleep cycle is off again. Also she still does not respond to cues, "If you can hear me blink your eyes twice" doesn't work. Her hearing is acute (body twitches at every sharp sound in the room), so it must be her understanding.

Valentine's Day 11am: What a busy week of visitors and it must have lifted her spirits. Her eyes continue to focus on them. But she developed a slight cough. Have to watch her lungs and throat.

Saturday Feb 16 3pm: So I stimulate her mind with anything. Sometime ago when Miranda got started well with BTI she was taking classic pop piano lessons. Running thru her class pieces I found this and when she heard it her mind was at peace. ["If We Hold On Together" from "The Land Before Time" (1988) Music by James Horner & Will Jennings Originally performed by Diana Ross
Played on Yamaha P-140]

Tuesday Feb 19 3pm: Little progress of cognition. Even her apparent "pleased to see me" look in the morning getting rarer. Endurance is such a passive thing. I think I've found a better word to replace the title of this post: Steadfastness.

One day this blog title must also be changed - to FallenPillar (restored). When will it be?

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