What can you do?

"It's like the person is in a burning house, but you can't do anything to rescue him..." the monk said, as he recalled on the phone his experience of having to deal with the slow, gradual death of his disciple. It's true... how hopeless I often feel, how incapable, how tied my hands are to want to remove someone's fear and worry, but feel so utterly useless because I do not know how!

And because I do not know what I can do to help, I feel like I'm failing miserably at being with mum, at taking care of her, at making her feel secure and supported. This sense of worry and sense of failure is multiplying in my mind, which has been racing and restless largely because of this (and partly because of my longings to go home...) for so long I feel so exhausted, physically and emotionally. This mind of ours... it's so perpetually bombarded by worry, fear, and longing! This mind of ours, creator of our moods and the worlds we live in.

I must learn to tame the mind, tame the mind to be in one place, to be focused on one thought at a time, and not to let it wander around  like curious little puppies. Be in this place, be in this moment, be with the person you are with, and enjoy every single moment together. That is living fully, that is living without worry, without fear.

The monk comforted me, and reassured me that often all we can do is be there, be supportive. Nothing else, however inadequate it may be. Even if you want to do more, what more is there that you can do...? I'm not a healer, I'm not a trained physician... I'm not God who can miraculously will or wish the cancers away. I'm just a son trying the best I can do help, to offer support. It may feel inadequate, it may not feel like it's enough, but really, what else can I do...?

"Don't think about how you're going to die, but how you're going to live in this moment," the monk said. Bring her joy, show her love, show her compassion. "I'm sure she appreciates your being."

And she does. She reminds me almost daily by telling me how many of her friends are so impressed by me, how her friends, or even strangers on the street, praise me for being so caring, so loving.

I have to believe that, accept that, and tell myself over and over again, I am doing the best I can in the circumstances. And that is enough!

Crying

I told my brother the latest news, and I could see him on the webcam wiping his tears.

I don't know if I did the right thing telling him, making him sad, making him worry. But he does have a right to know, and now better than.

"We just have to deal with it, accept it, and see what treatment is available..." I said. Maybe those are not the most assuring words. They certainly aren't not words of comfort or consolation. I need consolation myself, and for now, what I said to brother are the only words I can think of.

He wiped him tears some more. It is difficult to see him sad and to see him cry. But I had my chance to talk to him, while mum is out, and it is easier now than if mum were around and watching him cry.

We talked a bit about the wedding, in a way to distract him and make him feel happy. "Mum is really looking forward to the wedding. And she's happy that you're finally settling down. It's one less worry for her," I said. Brother is lucky he has found support and companionship, and whatever happens to mum, at least he'll have another person to take care of him, to love him. Perhaps it is selfish, perhaps it  is being jealous, but who do I really have left, but friends and relatives, whom I value, whom I am grateful to, but at the end of the day, they can give me only so much...

"Please don't be too sad. Please don't worry too much..." I said, just before our conversation ended. But I imagine brother now, tearing and crying like I did when I heard the news a few weeks ago about mum's condition getting worse. I can only imagine that pain, that hurt to hear such devastating news.

Be well, brother... I'm sorry to break the news to you, and I'm sorry to make you so sad...

Call

Mum was out for a bit of massage, something she does after her chemo sessions. The phone rang, and it was a friend of hers.

"Just calling to check up on your mum," she said. I recognised her voice. In the time I have been back home, this auntie has called to see how mum is doing at least half a dozen times.

I thanked her profusely. I felt my many, many thanks cannot express how grateful I am, how much I value her support and her phone calls. I was moved to tears, and had to suppress myself to avoid betraying my wavering voice. "Thank you for your calls, for caring so much about mum. When I'm not here, my brother is not here, and you often call. I really am very grateful..."

"It's nothing," she said, "Just friends supporting each other. I'm a bit worried about her [my mum], especially during and just after chemo, so that's why I call."

I thanked her again, and could not think of anything else to say. Deep down, I was filled with such gratitude that words are meaningless and useless to express how I felt.

"Encourage her, don't always talk about her illness but also about other things. Let her vent," the auntie said.

We all need to vent indeed. In many ways I am glad that I am here so mum can pour out her pains and her sorrows. It may get too much at times, especially when she starts to talk about wanting to be left to die. Her complaints may overwhelm me, flood me with such deep, deep sadness, may trigger a rebellious unwillingness to really face and accept the reality of her situation.

But most of the time, I let her emotions unload on me in the hope that she will feel relieved afterwards, in the hope that the less she bottles inside, the less damage her pent up emotions can do to her physical body, and the less her frustrations and worry will become food for the cancer that loves foster and feed on negativity and stress.

"I'll call back again later," she said, and the brief conversation ended.

Inside, the indescribable and so inadequately expressed feelings of gratitude grew and lingered...

Changes

Life changes, and plans change with it. Change, uncertainty, unpredictability. We have to just change with change, otherwise we’ll forever torment ourselves with things not going according to plan, not according to our wishes.

It seems like every day there is change, most things we don't notice, but some things, and sometimes, it frustrates us. Change in the weather, change in the schedule, change in the body, change in the mind. With mum's health, it's change in the date of the next test, change in the date of the next chemo session… With the approaching dates of my friend’s arrival next week, I feel kind of torn between wanting to be there for mum, and wanting to make sure my friend (and I) have a good time together.

He has been exceptionally patient and understanding. Once he said doesn’t matter where we are, or where we go, for the point is to spend time together. Everything else is not so important if you enjoy the moment, and enjoy one another’s company. Having and enjoying good humour and good companionship makes even the most tedious of places or situations seem fun!

I’ve planned trips away, but these trips and dates of these trips keep on changing, because my mum’s hospital appointments keep on changing. It’s not ideal, but what can I do but adapt and change plans accordingly? Really, I could begin to feel frustrated, feel upset that things may have to be cancelled or postponed, but what can I do? If I were a perfectionist, if I want everything to happen like I want to, then it is only going to cause me unnecessary stress and maybe even create tension. That’s no fun for anyone.

Just go with the flow… let things be, and live life accordingly.

                                                                                                           

End of third session

Is it harder to suffer than to watch someone you love and care about suffer? I do not know. But I do know it is extremely straining on the mind, on the emotions, and on the soul to see a loved one sick, depressed and talk as if anytime could be the end.

Went in to the hospital this morning to remove mum's invitro chemo tube. She had been feeling nauseous when she got up. In fact, I was waken by the noise of gagging over the toilet bowl. As we walked home slowly, her mind appeared scattered, and she spat out foamy fluids. "It's not phlegm" she said. It's the medicine, toxic and disgusting, mixing with fluids of her own body. Again she talked of death, of dying. Worse, she said again that she was waiting to die. All those toxins, all that medicine, all those pills and injections.What's the point?

I cannot explain how much it hurts to hear that... can anyone? Yes, it is the medicine and nausea making her think and talk this way. We are all dying. It is more certain than anything else as soon as we are born, we are dying, and waiting to die. But to hear that from your own mother... it sounds worse than anything else, worse than the worst possible swear word. I breathed deeply, and sniffed. Once again, I feel her illness, her occasional depression, test my patience, test my ability to provide the best possible love and care for her.

I feel myself tighten and tense, long to get away, long to escape and not have to deal with all these things. Again, I am so torn because I feel responsible. Despite being so weighed down by her illness and her destructive thoughts and words, I feel I need to be here for her, to support her however I can... but how much more of my own wellbeing can I give up in the meantime?

"It repulses me..."

Another visit to the hospital, another quiet and slow walk home. For the last two days, going to the hospital seems to have become a routine.

Today was an appointment with the neurosurgeon, from whom we wanted a second opinion about the recent spread of the tumour around the spine. He didn't say much, only that more detailed scans are necessary before he can make a full(er) diagnosis, and before he can recommend treatment. I did manage to see an image of the spinal column from the latest MRI scan. As the doctor zoomed in, unmistakably there was a massive grey lump around the spine. It looked so innocent on the flatscreen of the computer, yet, it is so deadly, so vile, so malignant...

There is nothing that can be done till two weeks from now, when the results from further tests are revealed. Mum left the hospital, and once again she looked down. I tried to cheer her, the weather was beautiful, which is a novelty given the dreadfully cold spells Taipei has experienced since I arrived.

"Going to the hospital, it repulses me..." she said finally as we walked along the banks of the little creek on the way home. "Better to let me die..." It sounded much worse in Taiwanese, a line to the effect of leaving something and not tending to it so that it would just rot away and die. But this is my mum we're talking about. This is my mum talking...

"Don't say that, please..." I was frustrated, and affected. The air was heavy with burden, depressed and fragile with fear and sadness. Momentarily I was lost for words, unsure what I could say to get the stale air and conversation moving again. Perhaps it was best not to say anything at all...

She threw up shortly after we got home. Little came out, except thick slime and saliva, and now she is  lying in bed resting. She did not manage to sleep at all last night, something that is common for her on the first night of the chemo treatment. Earlier while on the phone she sighed and lamented how bitter life is.

Perhaps it is the medicine talking. Perhaps it is the nausea and the headaches, the discomfort and the unsettledness of having to carry around a bottle with her that is making her depressed and have all these extreme thoughts.

But these feelings will pass.

 Won't they?

If
I can also let go of the whole world,

At least [I] still have you

Worth me  treasuring and cherishing,

And you being here

Is precisely life’s miracle.

Maybe

I can also forget the whole world,

Only [I] do not wish

To lose news of you.

It seems so normal

After a few days of cold, damp weather, the sun suddenly appeared again. The clouds parted, and out came the warmth, the brightness of the sun.

Mum and I went for a walk in the morning after breakfast. It's become a sort of ritual for us. The doctors said she should walk at least an hour every day, and also do other kinds of exercises to keep the body moving, oxygenated, so the cancer won't spread so quickly.

We walked down the tree-lined boulevard, with the sun beating down on our faces. I was feeling light and smiley, and mum looked happy too. Everything seems to be so normal, for a moment or two, it was as if there is not a worry in the world, and the world of hospital wards and chemo treatments appeared to be so far, far away.

 But like with all things in life, I guess it is all a matter of perspective, a matter of the mind. Barely a day ago, we received such devastating news, and mum's mind, as well as mine, were clouded with fear and worry. For a good few hours we were quiet, quiet as we silently walked home, silently ate.

But at bed time, I climbed onto mum's bed, and hugged her, held onto her tightly. It was difficult to do, because I felt my tears tearing. But it felt so right, so very right to hold mum, to reassure her with pats on her back and my whispers that things will be alright...

Mum said she felt very lucky to have me, and she said something that made me so touched. "You've done so much for me already, I could not ask for more..." With those words, my doubts about myself, about what I'm doing and about my repeated attempts to try to be here with mum as much as I can were soothed and removed.

I may not be the perfect son. I may get grumpy and may be impatient and may be not as understanding as I should be sometimes... but I really try, and I'm glad mum feels it, treasures it, and will remember it.  Glad, not because I seek approval or praise, but glad because I know that I make a difference, however small, however insignificant...

We spoke for almost an hour, way past her normal bed time. But it was a conversation full of memories, longings and hopes. Perhaps it takes the sight of possible death to develop a certain bond, to initiate a heart to heart talk between a mother and child (or between anybody, for that matter). Mum recounted dad's passing, and told me how she would like to be taken care of... Maybe it's all premature, for who knows how long she has left, or seen from another perspective, how long she will go on living?

"Just be happy, be strong," I said, "Just take care of your health, and everything else is not so important..."

Mum smiled at me, and stroked my head softly. I know deep down, she worries about me, and she said again that she is worried about my "abnormal" ways (alluding to my homosexuality, but that word, or any equivalent is never mentioned...). Perhaps seeing how I hug a big teddy bear, which my friend gave me last year, mum actually said she  feared that my friend and I would get married.

"Married? I'm not even sure where we stand at this point, let alone talk about marriage!" I could barely contain my laugh at such a strange twist in our conversation, and at how my mum was already imagining things. "We care about each other, I like him, I enjoy his company a lot, and I think he feels the same way back".

For the first time ever, I made it clear to her that I am the way I am, it is nature that made me this way, and nothing can change that. "I'm happy, and that is what is important. And I want you to be happy..."

Mum smiled, and in that smile hid a kind of recognition of, or perhaps resignation to, the impossibility to change fate, to change the course of life, and to smoothen its unpredictable twists and turns. I hugged her again, to reassure her that I am still the son who cares and loves her, that nothing changes. I think she felt it, received my hug, and she understood. Or at least, little by little is beginning to understand.

One day...

I was just about to walk into the living room, and I heard mum on the phone...

"...he rented a larger apartment, and he said he wanted me to visit him when my treatment is done."

I could not contain my tears again, and had to brace myself. I turned away, and hid in the bathroom, afraid that my cries would be heard.

Yes, that was the hope. For a long time, I have wanted to show her my life, share with her my new life in the New World. In a way, to let her know that I'm doing well where I am, to reassure her that she has nothing to worry about, because I am happy and comfortable, or at least I can be happy and comfortable where I have settled. But maybe that dream of one day showing her my life in Canada will never happen now...

I looked at myself in the mirror, at the quivering lips, at those sad, sad eyes that were tearing and Where was that child who once believed in miracles? Where is that child who once was so strong, was so impenetrable and collected?

What's wrong with me...?

Chemo again

Within two hours of the latest diagnosis, mum went to the oncology ward to begin her latest treatment. She was strong, and laughing, joking with the nurses as they attended to her. As one nurse injected a needle into her artificial artery, suddenly she screamed out: “Ow, it hurts!”

I saw her contorted face, and deep down felt her pain, even though I know I could never feel someone else’s pain… The nurses comforted her, chit-chatted with her as they prepared for her medicine. Out came bottles of toxic drugs, pills and tubes. They continued to talk, asking her how she has been, what she’s been up to. It’s like they know mum so well, as if they are good friends who have not seen one another for a long time. It was beautiful… the nurses, they were so beautiful, and I was moved by their compassion, by their care and attentiveness.

Mum told me to go away and come back in a few hours, so I don’t have to spend the time in the stale air of the hospital. I grabbed her hand as I parted, and turning away, I could feel the tears swell up again.

I walked as quickly as I could outside, to the little park next to the hospital. There, I had spent many hours before waiting, hoping, meditating. Memories of three years ago flooded back… this same pond with little swimming fish, these same rocks and trees offered me consolation as dad slowly slipped out of my life… And now they again offer me consolation, as mum enters a critical and uncertain stage of her treatment.

I could not contain my tears, so they flowed out with little sobs as I sat on a bench in a secluded area of the park, away from gazing eyes. Nobody noticed at that very moment, at that very place I was crying. And mum would never know that I have been crying because of her.

I cannot help it… sometimes life gets too much, I just have to let it all out. Am I weak to cry? How trivial are these things I am facing compared to the pain and suffering of others who have no hope, who have no cure? Am I a coward to fear, to dread, to be so consumed with dark thoughts and negativities? Am I a dreamer to imagine one day, perhaps a month, perhaps a year from now, I can look back and smile because it is all in the past?

I cannot contain my tears… tears that are now falling because of sadness, because of circumstances beyond my control, because life is happening so fast and so unpredictably that I am unsure what to make of it all.

All I wish to give mum is my love, my support, my care as she undergoes yet another painstaking and agonising dose of treatment… Can I give her even those things?

"It's complicated..."

"It's complicated..." With those words, the doctor looked at us momentarily before he attended to the next patient. As I exited the hospital, another patient was reading a book entitled "Cancer need not be the end".

I was so scared, scared like I've not felt, or perhaps never felt before. I was so overwhelmed by the latest diagnosis, I felt such strong, strong emotions well up. I could have broken down and cried there and then, but mum was right beside me. I put an arm around her, patted her, swallowed my pain, my tears.

If I felt so terrible, imagine what it must have felt like, what it must feel like to hear the news. She looked forlorn... she frowned, and her eyes looked like they were about to water. It was hard to see her, so disappointed, see her disbelief, see her frustration.

There has been more spreading. Though there is apparently nothing in the lung, there may be something in the spinal chord, and further scans are necessary. Possible imminent surgery may be needed, or otherwise her nerves could be injured, and she could become forever disabled. The chemo treatment must continue as planned, but now there is the added complication of a pending surgery.

"There's no hope... This is it..." She felt apologetic that again there is bad news, and that she is burdening me, delaying my return to my own life. She was saddened by the thought that perhaps the plan to visit me in Canada in Spring will never happen now...

"Please don't say that..." I was almost crying, but I held it all in. Held all the pain in, swallowed it all, contained it all, however bitter, however foul the taste, because she does not need to see me cry after hearing such a damning diagnosis. "Please don't say that. If you have no hope, what about me?" Don't worry about me, I said, "Just take care of your self, do the treatment, and hope for the best..."

But was it all a lie I was telling her? We walked in silence home, and she held onto my arm. I am glad that I am here to support her, to put my arm around her when needed, to put my palm on her back so that she can feel loved and supported.

It is hard to digest the news, even harder to imagine the possible outcome of her latest diagnosis.
A million things are going through my head right now.... can I be strong for my mum? can I comfort her, accompany her, take care of her? My hope of returning to my old life seems for now dashed, and once again my future is filled with such uncertainty, such unpredictability it is sickening and nauseating... My hope and plans to have a good time with my friend when he visits next week is now thrown into disarray, and how I hate to disappoint him, especially as he is flying all the way here to be with me...


I;m so lost, so confused at this moment, so close to breaking once again......

 But I must be strong...

Jade rocks

"Do you not see the face of Jesus Christ? And here... right there, half a face of the Lord Buddha."

I looked and looked, but for a long while could only see the framed photograph of a colourful pieces of jade on display. The pictures were indeed beautiful, and I have never seen jade stone splashed with so many varieties and shades of colours and contrasts. I tried to see the monkeys playing, tried to spot the dragons descending from the heavens, tried to decipher the faces of happy and hapless beings, or the apparition of the Holy Mary from mere glares from the flashlight of the camera. But I really had difficulty seeing what I was supposed to see.

Maybe I lack faith and am plagued by doubt. Or perhaps my practice is not 'high' or refined enough to see such divine revelations. People around us on the tour seemed to be all nodding with contented and inspired looks on their faces, and all seemed to be so fascinated by the guide, who with a laser pen to highlight the signs and messages left behind by higher powers, took us on a tour lasting almost two hours. Even though mum was enthusiastic about the exhibition, towards the end, she felt exhausted and we left the tour and left the rest of the group who seemed so absorbed by the pictures.

I guess people see what they want to see. And it is easy to see something when you believe that it is there, and even easier to see something when you are told that this is what you are supposed to see.  I don't doubt what people were seeing, but as I walked from picture to picture I could not think back at philosophy lessons I had back in high school about how people often don't just see the world, but tend to "see-as".

A few weeks ago, mum received tickets to go see an exhibition entitled "Colours of the Sky in Jade Paintings". Thinking it was an exhibition of different magnificent jade rocks, I was kind of disappointed to see only framed pictures of low-resolution close-ups of various rocks, each with very elaborate and poetic names. The event was organised by a spiritual guru, who in recent years has become famous with his weekly lectures on TV. He-- who calls himself "professor", even though he only graduated from elementary school-- talks about spirituality, about Buddhist practice, Taoist philosophy, and is known to have an ability to predict the future and read people's lives, because of his advanced level of practice. Though he began on TV, he has grown into a cult of some sort, with a lot of followers/believers.

This "professor" does possess great oratory skills, and some of the things he talks about share roots in my own spiritual practice. But more and more, I'm disturbed by the fact that his talks and events are always so commercial. He may be well-intentioned, wanting to spread the word and benign benefits of having a belief or having faith, but on the side he sells a range of 'holy' products, from mineral water, to incense, to blessed rocks to face masks and various blessed potions and lotions. Even my mum has begun to feel skeptical about his true intentions, as she recently attended a lecture which was supposed to be about the end of the world in 2012, but turned out to be more like a tel-sell programme. I do wonder what this guru does with all the money he and his troupe gains from all the lectures and products they sell and promote...

We left the exhibition hall, exhausted, and drained by the bombardment of what we should see in the framed photographs, and by the shameless promotion of various products and merchandise on offer. There is a way to happiness and to enlightenment, as the Buddha once taught, and it begins with yourself, with the calming of your own mind, and with the spread of compassion and kindness toward yourself and toward others.

And then there is another way, which is more costly, rests blind faith and following someone who claims he knows the way...

Bed warmer

There once was a boy called Huang-Shiang (黃香) whose  kindness and love towards his parents has touched people for generations. During the Summer, when the mosquitoes are around, he would go to bed early. When asked why, he said he wanted the mosquitoes to bite him first, so his parents could sleep better at night. In the Winter, when it is cold, he would go to bed early too. When asked why, he said his body temperature would warm the bed so that when his parents went to bed, they would feel warm. His actions are often cited as the epitome of filial piety (孝), a great virtue in East Asian / Taiwanese society.

I don't claim to be as great and praiseworthy as Huang-Shiang, but when mum retired to the bedroom to sleep, she found her quilt had been warmed by an electric blanket that she had recently purchased. It was such a simple gesture, turning the electric blanket on and putting it under her quilt so she doesn't have to climb into a cold bed. But mum was touched.  "You remind me of Huang-Shiang," she said, "And how I wish my child could be with me..."

She explained afterwards that it was just something she thought, something provoked by my gesture, and she meant nothing with those words. Yet, I felt again the pressure and her desire to have me around to keep her company. It is only natural, and I can understand why she has that desire, especially given the fact that mum and I have been separated and have been living apart since I was 13 or so. And it is also natural, because mum is ill, and at times feels like her world is going to end soon, and perhaps she is afraid that it will all end with her all alone by herself...

Moments like these make me doubt myself again, despite the fact that a few days ago, everything seemed so clear what I should do to lead my own life and try to begin something with my life. Mum may have really not meant anything much when she expressed those sentiments, but deep down inside, I know there is a desire to have me around, to want someone to be with her to keep her company.

And frankly, I don't think I can fulfill that desire, however much I would like to be there for her as much as I can. Increasingly, I feel I cannot forever stay around here and live in the same confined space with my mum for an extended period of time. A month or two may be alright, especially while she's undergoing treatment... but in the long run, not having my own space, not having any privacy at all, will make my life miserable, and I'm beginning to feel it already.

Once again, is it selfish to feel this way? Is it wrong to want to have my own space and do my own things away from mum?What child does not grow up and eventually leave home to begin his own life elsewhere and separate from his family? I have had and enjoyed my freedom for so many years, and to suddenly have to live together with family takes patience and adjusting.

Slow start

It's only the second day of  the new year, but I feel so sluggish and tired for no particular reason. Been home just over a week, and other than spend time with mum, I've not really done anything worth mentioning.

I actually feel kind of useless. Mum's condition is more or less stable, or at least for now, at least from the outside. It's not sure how she will respond to the next dose of treatment in two days time, but so far, I'm not really sure what I can do here, or whether being here really makes much of a difference. She has her group of friends she talks to, she has her daily routine of exercises and trips to the market. Whereas I feel like a visitor, even though I'm at home... Sometimes, I really do wonder what I'm doing here, and feel like I want to get back to my own life as soon as possible, because I'm bored here.

Maybe it sounds like I don't appreciate time spent with mum, or that I'm being/becoming selfish wanting to do my own things and live my own life. But it's not that, I don't think. I know every moment together with her is precious, and I'm sure when the time comes when she is again weakened by the chemo or depressed by her illness, I can offer invaluable support and company. But more and more, I feel like I want to get back to my routine, get back to my own life and my work. I just want to feel useful, feel like I'm doing something substantial and constructive, instead of just sitting around, cooking, washing up, sweeping the floor, and making the bed.

It doesn't help that the apartment is so small that I feel increasingly claustrophobic in such a confined space with mum all the time, day in and day out. I don't even have a room where I can retreat into to do my own things without being distracted by mum watching TV, doing her things, or just hovering around watching what I'm doing.

I think I'll decide on a date soon when I'm going to head home. My own home, back to my own life. The question is when...