Monday, 19 October 2015

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.

Tuesday, 1 September 2015

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...

Thursday, 2 July 2015

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>

Saturday, 28 March 2015

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

Tuesday, 27 January 2015

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

Wednesday, 26 November 2014

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

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