Sleepless night

I cannot sleep... Already three in the morning, and yet I'm wide awake. I fell asleep for an hour or so, and then was woken up by the night nurse coming to check on mum. Since then, a mosquito, sounds of snoring, and my own proliferating mind has kept me awake... To think of it, even when I was "sleeping", my mind was not. So many images, so many thoughts, so disturbed, so agitated and scared... And most of all, this creeping loneliness and sense Abandonement pesters me, haunts me...Deeply.

it's not over yet..

The surgery may be over, but the worst is not... Coming Monday, we will need to decide what step to take next

Meeting her grandson

07012012
10.32

I cannot imagine anything more beautiful. A grandmother holding her grandchild in her arms for the very first time. The sun shown on mum's face, revealing her wrinkles and getting hair. My nephew was calm in her arms, and curiously eyed my mum with a puzzled expression. He reached out to finger mum's neck brace and play with the collar of her pink hospital gown.

I stood on the side, as I normally do at these occasions, and took it all in. Mum laughing, pulling face at my nephew, my brother and sister-in-law arm in arm admiring the beautiful first moments of bonding between a grandmother and her grandchild. Mum has seen him so many times on Skype, in pictures and videos... But nothing, nothing compares to the real thing, nothing compares to the warmth and little delicate movements of a baby whose eyes take in this world with wonder and awe. I teared...

What a scene, what a moment. In the background, oxygen tubes, some clutter of glasses and cutlery, pills, and a bouquet of fresh lilies that brother brought from the market (at my suggestion...). Despite the somewhat drab surroundings of the hospital ward, nothing can distract from this very moment.

This is the first time that mum is holding a baby. Not just any baby, but her own son's baby child. What thoughts were behind her little smile? Was she proud to be the grandma of such a precious, and fragile, little being? He is the source of much of her happiness. He has been the source of her strength and determination to get better, for a life wish of hers is to one day hold her grandchild in person. And that wish was accomplished today.

22.54

Another night at the hospital, the eleventh night since my return. There was not even time to go home to rest, even though I did go home, but only to pick up something and immediately leave to return to the hospital.

Mum tells me to go and rest at home. But who will stay with her? Who will attend to her needs, massage her sore back and behind? Who will bring her nutritious food and watch over her so that she does not stumble and fall from her still frail legs?

Not that I am the only one who can make sure she is alright. Mum has been talking about hiring someone, a carer. But I cannot let go... I cannot feel comfortable unless I see that she is alright.

My brother came back last night, but to be honest, as some of mum's friends tell me, there is little he can do. He has a wife and baby to take care of, besides he has to go visit a lot of people in the coming period who are all eagerly wanting to see the little baby. My brother came by today and sat next to mum. It's good that he does that, to keep her company. But when I asked him to give mum a back rub, or to moisten her skin with lotion, he only did so half-heartedly... I know, I cannot expect everyone to do what I do, to be as attentive and detail-minded as I am. And besides, he's still recovering from jetlag and didn't sleep much last night because my nephew was noisy.

I know being with mum makes her uneasy and feel guilty. She keeps on telling me to go home, to leave her for she will be fine in her own. But I just cannot leave her like that... And I get irritated too. So tired and irritated that she is telling me to go and leave her  when all I'm trying to do is be with her at this crucial time.

To be honest, I do feel the fatigue and restlessness creeping in. I barely have time for myself, every moment it seems there is something to do, something to take care of... If not the dishes, then it's making sure mum gets the right pills and necessary nutrients... If it's not making sure mum is comfortable in bed, then it's making sure mum gets up and walks around a bit to exercise and train how to walk again... Every single moment it seems I am busy doing something. I do it all, I face it all with a calm composure, but deep down, I feel myself cracking...

I barely have time for myself, to write, to work, to collect my thoughts and calm down. At the same time of dealing with mum's new condition, my thoughts drift to my ex, who keeps writing me messages that I don't reply to. Don't want to reply to. Because I don't want him to feel conflicted and torn any more. He is better off without me, without having to listen to me talk about my problems and what I'm facing here. He told me so clearly he is happy with this new guy, so implying I have given him much grief and unhappiness (admittedly in the past few weeks I have...). If he is happy, what does he need me for? What else can i give him that his new "boyfriend" cannot give him? I see little need for us to talk at all, as he seems to want to, when all I can bring him is heaviness and awkward conversations. So I just want to cut myself off from his life. At least for now. Is it cruel? But he told me to move on... He's already doing that. So I'm just letting  him finally "resolve" me and move on, as he has wanted to for a long time.

Probably the hurried and randomness of the notes for the past few days reflect the mood I am in... Disjointed, nervous and agitated... And so very tired...

Day eight

05012012
7.37

Dream... Why am I so tormented by dreams and thoughts? I am already so physically exhausted, and yet when I lie down to sleep, dreams plague my mind...

A myriad of images and random people in my life... With my brother on a bus heading back to Taipei from somewhere, the landscape outside seemed barren an deserted... With my ex and two other friend's (faceless, not recognisable...) and checking into a youth hostel. The mood was so tense, and I was made to feel like I'd done something terribly wrong... I was made to feel so guilty, even though it was (whatever it was) not my fault...

I wake up, and it is already morning. Half past seven, the hospital ward is waking up, people are moving about in the corridor, the cleaner is here to pick up rubbish... I open my eyes, realise it was a a dream, and take a few moments to allow the place where I am to sink in...

I am in hospital still, sleeping next to mum on a tiny bed/chair, and my back is aching, my head is hurting. I lift my her, and see mum smile at me, softly tell me: "Thank you for being here for me..."

Those words fill me with warmth, with hope, with gratitude that my dear, brave mother is here to fight and live for another moment, another day.

And how fortunate I am, despite the aches, the discomfort and at times irritation of having to take care of not only her wellbeing and health but also care for my own health and wellbeing, I am with her, and she is with me still...

18.37
Day two of mum rehabilitation. There is a class in the morning, aimed at training the strength of her arms and legs and basic coordination. In the afternoon, from two thirty till around three thirty, four o'clock, there are exercises to help her stabilise her walking, train her leg muscles and general endurance.

It is not easy, as mum is still a bit wobbly and unstable when she walks. She sighed and told me today how quickly from one day to the next she could lose so much of her ability to walk. But I encouraged her, at other people's expense, yes, and told her that her condition is much better than others... Those who are completely wheelchair-bound, those who have lost almost all mobility of their legs and arms and hands... Those who must endure so much pain just trying to sit up straight, let alone stand or walk...

One exercise involves mum using chopsticks to pick up marbles and place them from one bowl to another. Another exercise involves mum using her foot to shift beads from one side of what looks like a child's for learning how to count.

The physiotherapists who instruct mum are amazed by her progress and ability to do many of the exercises with speed and accuracy. I can see mum struggles and strives hard, I can see it from the beads of sweat on her forehead, from the way she pants and gets out of breath. Mum is really trying, trying very hard to walk and stand steady again. As my aunt told me, she is strong, she is doing it so that we, the children, can see her progress and recover quickly and soon feel that it is alright to leave her and go do what we have to do. My aunt tells me, deep down mum feels responsible and guilty to have to become dependent on me, and she would like to quickly recover so I can go back to my life. And I suspect, mum is striving hard, pushing herself so that when she sees her grandson for the first time, can garner strength to hold him, rock him in her arms...

It is amazing what mum can do, what mum can set herself to do within such a short period of time... Her courage, her strength, her determination to get better, to not be beaten is admirable. And I am so proud, so very touched that she is my mother, and that I am her son...

"Forget about him..."

"Forget about him", my friend urged me, "Just forget about him..." Why does he say that to me? Is it because I'm still falsely clinging onto the hope of my ex turning around and telling me he misses me so much he cannot live without me? Is it because I'm still living in the fantasy world of us being together after a period of separation?  I am ignoring his attempts to contact me. I just do not want to be hurt, do not want to be exposed to him any longer than necessary, at least for now. It is a sickening attitude, I know... But part of me feels such sense of injustice that I am here dealing with the life and death of my mum, while a few days just before I left he told me to go see other people, to stop waiting around. Because he's already moved on. He's already found what he is looking for... happiness. He told me he is happy, and that is enough. I cannot offer him that, I cannot stand in his way of his happiness.  I do not need him to have pity on me and call me and have heavy conversations and ruin his chance at happiness.  So the distance and time will tell, the distance and time will show us how far we drift apart, and whether there really is something so deep and fundamental there between us neither of us can live without. 

Completely drained....

I'm so exhausted I can barely keep my eyes open... So very tired from being awake and alert and responsive to mum's every need, and from sleeping terribly on the foldable sofa. So very tired I can type no more and must retire... And yet even when I sleep, my mind is bombarded and laden with thoughts, with dreams, with images of my ex...

There is no rest, no real rest...

For now I will just say a lot will be decided in the coming days, and it will very much be life threatening and -changing...Though the surgery was a success, but it did not completely get rid of her cancer...

Day six

aan mij

03012012
9.50

We were woken up by the intercom hanging over the bed at around a quarter to eight. "Time for a CT scan, someone will be over to pick you up."

Within minutes, an assistant came and we rolled the bed to the emergency ward. I waited outside as mum, strapped in, entered the massive machine.

Within half an hour, one of the surgeons came and said the results of the scan were ready. He took me to the nurse station, and we sat down by a computer screen. He showed me a picture of "before", and clearly visible was  dark mass that had completely surrounded a section of the spine. The picture "after" shows an empty space where section C7 of the spine was.  The surgery removed that part completely, as the tumour had eaten the bone away and was encroaching on her nerves, hence her constant pain and sores. With the rotten spinal column taken out, on the screen I could see white objects connected to the sections immediately above and below section C7.

"They're titanium nails and supports. I can't say a hundred percent they will hold, but I can say with 95% certainty that the support will hold up her spine."

The problem with Section C7 has been removed, but the surgeons discovered a small lump in section C8. It also has to be dealt with soon, otherwise it will grow and cause sores and pains like before.

The surgeons who operated on mum will discuss with mum's main physicians what further steps to take. The surgery, though  it was successful, only managed to remove part of mum's tumour. There are other places in her body which require treatment, and those have to be done after mum recovers from the surgery. The cancer is spreading, and that is a fact. At this point you can no longer fully take all the cancerous cella away. You can just try to prevent it spreading too quickly.

One such possible treatment is a new type of radiotherapy known as "cyber knife". It uses a vert concentrated dose of radiation to target a particular area, and causes less extensive cellular damage compared to the traditional radiotherapy treatment like the one mum underwent back in May/June. But that treatment is only available at Wangfang Hospital, which is on the south of the city, at least 40 minutes away by metro.

I was numb for a while after listening to what the doctor had to say. Of course, I'm happy mum's surgery went well, and that she has remarkably made a speedy recovery. Even the nurse was surprised. She had two operations, at the front and back of her neck, and yet within two days she could sit up straight, within three days she could stand and use a wheelchair, and within five days mum could slowly, slowly walk and use the washroom independently. That's amazing progress, and the doctor said she'd be discharged and transferred to the rehabilitation centre later today-- four days earlier than anticipated...

Mum had such a smile on her face, but I knew something she does not know. I dare not tell her, just not yet. Mum needs to enjoy the triumph and elation after having faced such a life threatening operation. I cannot dampen her mood by dropping news that she will need to undergo more treatment. Even for me, just hearing about more treatment is sickening. Imagine what it would feel like for her...?

Keep on smiling, mum... The smile will carry you and half heal you. At least for now...

11.30
I am often amazed by the efficiency in this country. Within an hour or so after the doctor came and said mum was stable enough to leave ward 173, the neurology ward, the nurse came by and said they've found a bed at the rehabilitation centre down the road. "Pack your things, the ambulance will be waiting!"

Together with my auntie and my cousin, we opened the shelves and drawers assigned to bed 29, mum's bed. Over the span of a week of so, we managed to accumulate so much stuff. I'm guilty of bringing or buying much if it, mostly products to give more more comfort and give her a boost of nutrition. Three pillows, various towels, four cans of protein supplements (protein helps wounds heal, as much of the body is made up of protein...), bottles of lotions and potions and personal hygiene  products (including edible, organic mouthwash and toothpaste!), bottles of tea and refreshments (for "fans" (visitors) who pop by, sometimes unannounced...). And then there are pictures and a painting, and my mascot space monkey, with his collection of notes of encouragement, which needed to be packed.

In the end, we had a suitcase full of stuff, a backpack, and a three- storeyed trolley to haul to the new ward. Luckily, especially could go inside the ambulance, which had a lifting platform wheelchair users.

The new ward is indeed much newer, located in the eastern part of the hopital complex. I had been there before, for it is the same place where mum has her appointments with the renowned neurosurgeon. In fact, her room us located two, three steps from the Office of the Head of Neurology,his office.

Ward 26 is quieter, brighter and modernly furnished. There are even pots of beautiful purple "Butterfly" orchids to decorate the hallway. The layout of the room is more or less the same: a bed and mattress that can be adjusted at three different places, a table on wheels, a cabinet and a bedside table. It's two to a room, and the lady in the next bed seems nice and quiet. The tv is a flatscreen, and is connected to camel, thus with a choice of around a hundred channels. Even the washroom inside the room is bigger, with supports next to the sink and toilet, and a special chair to allow patients with limited mobility to better shower themselves.

Mum was delighted at the change, and het bed is right next to a big window with a view of the  on-site tennis court. Her smile reveals the confidence and strength with which she is facing this entire ordeal, and that is beautiful to see...

22.24

It's relatively quieter and cleaner here at the rehabilitation centre. Mum is already asleep, and I'm ready to retire too after another long day.

Though we have relocated to a nicer, more modern ward, my thoughts go out to the middle aged lady next who shared mum's room in the neurology ward.

She is more a less in a vegetative state after what I heard was a brain surgery to remove a tumour. She has been in this hospital for over a month now, after being moved from one hospital to another. Her husband is the one who takes care of her much of the time, and in the evenings and weekends the children would visit. Over the weekend, the daughter takes over, and it was with her that I admired the fireworks at midnight new years day.

I asked my cousin, who is a trained nurse. There is really not much that can be done, except to make sure her condition does not get worse, and make sure she is comfortable and living with dignity, meaning being fed and cleaned up regularly.  When we were packing to transfer to the rehab centre, the husband came by and said bitterly that it must be because we "have the ability to"-- a comment implying that we either have connections or bribes someone to quickly transfer mum away. But truth is, mum is being transferred because her condition is stable enough to start the next step after surgery, which is learning to walk and so daily activities. Whereas the lady simply cannot get any better, and cannot possibly be transferred to another ward, unless a miracle happens.

I smile at her whenever I see her, but she simply looks blankly into emptiness. She mumbles sometimes, but her words are confused and do not always make sense. She often asks where she is, for she does not seem to understand she is in the hospital. The nurses come every morning to wake her up. They do everything to keep her awake, including pinch her, call her name loudly again and again, because otherwise she's awake at night and makes a lot of noise. But most of the time she just sleeps and sleeps, even when they put her in a wheelchair and roll her out she manages to dose off...

The poor lady is incontinent and cannot control her bodily functions so must wear adult diapers. Whenever the diapers are changed, the stench is nauseating and fills the entire room. The husband often gets frustrated at her, shouts at her, scolds her, sometimes even slaps her, which is unbearable, especially as they are just a few metres away and separated by a thin curtain. "You dirty swine," he once called her, "You only eat and shit!" That was cruel to hear, but I don't think the lady could understand, could hurt.
I can imagine his frustration, I can see the source of his anger. Imagine having to spend almost twenty four hours a day next to someone who cannot do anything at all, who is completely reliant on you, whom you must feed and wipe, who is only half awake mug of the time... I apologised to my mum in advance and told her if ever I am that rude to her, if ever I get angry at her and slap her, she should slap me back... Hard! Because nobody deserves and nobody should have to tolerate  such treatment...

I  feel so much pity and compassion for the lady. She must have been a capable and kind lady before, she looked like one on the picture of her medical file, which is displayed on the screen whenever the nurses rolls in the mobile nurse's station to check up on her. She has at least two children, who are working in something business related.

A once able and hardworking lady, I would imagine, now confined to the walls of the hospital and  dependent on others to take care of her most basic and human needs. Where is the dignity is living like this? What is the meaning of being kept alive day after day after day when you are really just a weak, semi-conscious mind confined to a much disabled body? Does she realise what she has become? Does she feel hurt and remorse and is she full of regret and bitterness at what life and fate has given her?

I bid her farewell, and I bid the husband farewell. I can only imagine how difficult it is for him to watch and have to experience his wife deteriorate like this into a half-conscious big baby who needs diaper changing and being fed. I can only imagine, perhaps deep down, the lady must be crying and feeling so trapped in her body, if she can feel and still have a semblance of consciousness.

Though I am here in the relative comfort of the neurology centre, I cannot forget that lady's face, I cannot forgot the harsh words of te husband, I cannot forget the stench and the wails at night...

Plan

Plan

Again my mind is hatching a plan, a devious but special one. Soon it'll be the one year wedding anniversary of my brother and sister-in-law. And I'd like to give them something very special.

They've not really had a honeymoon since they got married because of circumstances. So what better gift than a trip?

Eva Air recently unveiled its second generation of Hello Kitty jets with flights to Japan (and to South Korea, Hong Kong and  Guam). As my sister-in-law is a diehard Hello Kitty fan, and my brother has never been to tokyo, I thought it would be great anniversary gift. So I approached my sister-in-law's brother (whom I suspect is a homosexual...) and proposed the idea. He thought it is great and we'll figure something out with regard to the logistics, especially how to keep it a surprise and how to arrange for a baby-sitter for a few days...




I'm surprised I can even think of this kind of pleasant surprises with what I am facing almost constantly at the hospital. Or perhaps it is because of the difficulties and unpleasantness of what I am facing that I am devising 'pleasant' things to distract my mine...?

I'm imagining their surprise when they are handed the plane tickets... I'm imagining my sister-in-lwa's excitement as she boards the exclusive Hello Kitty plane (all the decor, the seats, the personal entertainment system, the plates an cutlery are all marked with Hello Kitty!!)... I'm imagining them having some quality alone and relief time together, perhaps the first real opportunity since my nephew was born...

Another mission to be completed, another pleasant surprise to spring upon someone close. How great if it all works out!

Day five

02012012
11.35

I feel faint and light headed. The poor quality sleep and almost constant work is slowly taking its toll. And it's only the fifth day...

Mum really cannot do much by herself and requires almost constant assistance. I can see she is frustrated and quiet. I ask her what she is thinking, and she says she let's her mind go blank. If that is  true, that is good. If not, I'm worried that she lies there and often has thoughts of regret and frustration, thoughts of anger and helplessness proliferating and disturbing her mind. The last two nights she has been sleeping badly, if at all. And she says she is besieged by dreams...

I can only offer her my body, my time, my care, my love... Nothing else. I can only wish her all the best and a speedy recovery, and nothing else more...

Day four

Day four
01012012

15.44

A big day today, as mum could eat solid foods again. Her first younger sister, who lives in the south, expedited some fresh fish last night and it arrived this morning, and my auntie (mum's second younger sister) made fresh soup out of it. This fish, the "seven star bass" (because on its head, there are seven dots that look like stars), is reputed to have healing abilities, and best for people who have just come out surgery on account of the fish's high protein content.  I was so pleased when she drank two bowls of fish soup, a bit of rice and vegetables, for the nurse did say that eating solid foods will do her much good and restore her energy levels.

Despite attempts to keep "fans" (eager visitors) at bay, mim's cousin came by, and so did her youngest brother (my uncle, whose family is in Vancouver), and the wife of mum's second brother. So almost all morning she was occupied, which in a way is good, as other than listening to classical music and looking at random pictures on my screensaver, I was out of ideas (for now...) how I could entertain her. But I also feared, especially as it's only the fourth day after the surgery, that having too many visitors may be too strenuous for her.

In the afternoon, after much goading, my uncle and I managed to sit her in a wheelchair and take her for a spin. I chose a fancy wheelchair, with suspensions, a seat belt and even the ability to recline, and out of the ward we went. Just a little walk, lasting around half an hour or so, but it was mum's first time out of the ward (except for yesterday when she went for an X-ray scan...) since she as admitted on almost a week ago. She looked happy, and said it felt good to breathe fresh air, especially as the air circulation is limited inside the room she shares with another patient. We were all surprised that mum could sit up for over half an hour, and we need to do this again and again so she gets used to the next brace and holding her head up straight.

Mum also had her first experience using the "mobile toilet" (a chair on wheels with a large hole where the seat is). She needs assistance sitting up and standing up, but other than that her feet are strong and stable enough for her to take little steps and for her to move about a little.

Little steps, everyday more, on the long road to recovery...

19.32

Something occurred to me today.

I was supposed to help a lady visit the doctors as part of my  volunteering I began recently on the 28th of December. Instead, I went into hospital to see my mum at around the same time I was scheduled to meet my patient. instead of helping a stranger and aiding her with her visit, maybe even holding her while she walked, I am doing that for mum.

Both experiences bring me much joy and fulfilment, but being able to help mum and make mum feel safe and comfortable of course gives me so much more...


23.47

I was half awake, half asleep, drifting in that dream-like state of consciousness.

"Weiwei... Weiwei..."

Was I dreaming? No, I opened my eyes and really did hear my name.  Mum's voice has gotten very weak after the surgery, and it'll take a few weeks for her to regain her voice again.

She needed to go to the washroom, urgently. I rushed to get the bedpan, for there was no time for her to get up and use the "mobile toilet" (which is a chair on wheels with a hole where the seat is).

Mum was very apologetic. I quickly slide the bedpan under her and she removed her pants. I went behind the curtain to give her some privacy.

A few minutes later, I went back into the room. Again, mum was very apologetic, and asked me to get new pants and a fresh "centre piece" that is placed on the mattress under the the area around the groin and buttocks. Mum had wet her bed.

She was so embarrassed, despite the fact that I repeatedly told her not to be. "It's all very normal functions of the human body, don't be ashamed of it!" I thought about the times when I must have wet my bed, and when mum had to clean up after me. I told her to lean to the side so I could inspect the bed. Luckily, only the "centre piece" and part of her pants got wet, and all that could be changed quickly.

"Don't think too much of it, mum. You tell me whenever you need to go [to the washroom]. Don't hold anything in." I meant it. Why should anyone be embarrassed about needing to poo or to pee? Why should it so shameful to have to clean it up afterwards? I guess part of the reason is the loss of autonomy, and perhaps te shame that mum feels that she is dependent on someone else, on her child in this case, which adds to the sense of regret and embarrassment.

Mum said she was weak after the entire episode. For the past few days, ever since the surgery, she was connected to a catheter, but that was removed this morning. And I imagine it takes so getting used to and it's a matter of regaining control of the bladder and urinary muscles.

"Think nothing of it... Get to sleep," I said softly as I kissed her hand. She stroked my hair and smiled and thanked me...

Happy new year

Final half an hour of the new year. Sitting in the bright corridor of ward 172 at the Taipei Veterans General Hospital, just outside mum's room.  I never imagined I would be spending this new year in Taiwan (again...). I thought I would spend it with friends, or alone at home. But I'm glad in a way I'll be welcoming 2012 with mum, even though she's already fast asleep. On the glass window of mum's room I placed some pictures and little notes. Something I enjoy doing, and something I thought would add a little touch of humanness and care to the hospital ward. "Happy new year" one said, and the other ＂Thank you for all your hard work". The latter note is directed at everyone, the nurses and doctors who work day and night to alleviate the pain and suffering of so many. But the note is also directed at the patients and relatives who struggle everyday against illness, anxiety, and fear... We have all worked very hard... All of us... Fifteen minutes till the new year, till the old is over and done with. Overall, it's been a tough year, and filled with a lot of downs, having to face a long-drawn out breakup, the prsopect of losing the best and closest friend I have ever had, and having to continuously face mum's  deteriorating health condition and brushes with physical disability, and death... But there too have been wonderful times... My first true love, which was so deep, so real, so very beautiful... the wedding of my brother... realising the dream of traveling with mum to Canada... Taking the first step to immigrating permanently... the birth of my nephew... and completion of my thesis after three long years. It has not been easy, but life never is... Hopefully the coming year will be filled with more positive energy and beautiful moments with people who make me smile and who touch my heart, and that my hopes and aspirations will begin to be realised. The final countdown... The sprawling city before me flashes with colourful explosions and sparks. Behind the dark silhouette of the Yuanshan mountain range, the spire of Taipei 101 glows bright with an impressive display of lights and fireworks. 2012 is here finally... I look down at the world beneath my feet and silently wished... May all beings be happy, may all beings be free. May mum regain her health, may she soon recover...  May I be strong, may I be filled with the compassion and love I need, and more, to carry me through difficult and testing times...  Happy new year... May it be a happy one.