Thank you Aaron for sharing such a poignant reminder that we, in the true nature of being human, are subject to suffering. Your story proves we have the ability to not only rise to the occasion and confront it, but to live beyond our circumstances in honor of our loved ones and the life yet to be lived. For me, your story was like peering into someone else’s cancer journey from the outside, all the while knowing full well the depth of the heartache you were enduring. Thank you for your willingness to share and the possibility that you may touch others in their time of need. ~Alysha
“Her Absence Is Like The Sky, Spread Over Everything.”
And my sorrow at her departure is like a fine layer of dust, clouding and tainting everything.
We met twelve years ago. We couldn’t be more different from each other. We fell in love. We got married after going out for six years. We had a kid after another three.
Our son is now almost four years old. He started kindergarten this September. She did not see it. She would not see any of it.
Winnie, my love, my soul mate, had been complaining of swollen lymph nodes since March, and they kept swelling up. She was diagnosed with Stage IV breast cancer on 7 May 2012. Went in for chemo and almost died on 21 May 2012, due to a combination of injection reaction to Herceptin and a pneumonia that no one knew about (she was already in septic shock, but didn’t know).
In October 2012, five rather successful sessions of chemo/target therapy (Herceptin + Carbo-Taxol combo) later, we were told the good news and the bad news: she was responding very well to treatment, but it had spread to her brain. Re-staged, zapped her brain ten times, changed to Xeloda and Lapatinib. Thought she was well. Ran around a lot, ate out a lot, did fun things together, but still slightly dizzy.
Then the bomb dropped.
She went into an oncology clinic on 9 May 2013. She had almost zero sense of balance that I had to carry her in. She could stand, but I had to make sure she didn’t fall over. At 1:30am 10 May 2013, the hospital called me in. Emergency brain operation to put in a shunt because of hydrocephalus. On 25 May 2013, they told me there was nothing they could do for her anymore, as the medication was not working and the cancer in the brain was still progressing. Fast.
On 4 June 2013, I moved her into a hospice. Over the next month, I spent everyday in the hospice, trying to take care of her. Trying to see what I could do for her. Wiping her drool. Moving her arms and legs in exercise so the joints don’t go stiff. That sort of thing. Mundane, unhelpful things. In the end, nothing I did mattered. Nothing I could do mattered.
On 5 July 2013, 1704hrs, she stopped breathing.
That moment is forever etched in my memory. She was breathing just once every minute all day. Then her heart rate dropped from 100 to 20. Then stopped. Then everything in her mouth drooled out. It was unmistakable that even the involuntary muscles had all given up.
I pulled off her mask to hug her, to feel her warmth, to take in what I knew would be my last breath of her smell, hoping that it will stay in my memory. (It didn’t.) I should have just pulled her whole body up to hug her, to hold her fully one last time. But I didn’t, because I was stupid and thought I would disturb something. What was there to disturb except Winnie, who would love to be able to be disturbed at that point.
The hardest during this whole time was a close race between deciding whether to tell her what the doctor had said, and deciding whether to put a tube into her stomach to deliver food because she could not swallow properly (no thanks to the brain met). The former involved telling my beloved wife that she was going to die soon, and the latter involved possibly killing her by starvation (I know the doctors told me it didn’t matter because her energy needs were so low that a drip will suffice, and the risks were not worth it, but it felt like I had a hand in killing her). I told her, though what I told her was that the medication was not working and it was up to her willpower now. As if she wouldn’t know the score. I decided against the tube, because I did not want to risk things like infection and I wanted her to be as comfortable as she could be.
People doubted me, kept telling me if we fed her real food she would recover. That was the most doubt I had over my decision, and the most guilty I felt about what I decided for Winnie without asking her, but I stuck with it. I now tell myself that the decision was made in the there and then, and it was made out of love, and there was no point in second-guessing myself just because someone else think otherwise. I even yelled at a friend of Winnie’s once for nagging me, telling her that there was no one on this earth who would want more than I to have Winnie healthy and whole again, and that I was not trying to murder her.
She went from 100 pounds on 8 May 2013 to 70 pounds in early July 2013. It was heart rending to watch them lift her up and weigh her at the hospice, seeing how she went from my plump little Winnie to just skin over bones. Knowing that it was, if only partly, my doing.
The amazing thing, and perhaps the big disappointment, was that I watched her physically deteriorate while in the hospital in May. Then when she first went into the hospice, she started to just sleep the whole time. I panicked one day because I couldn’t wake her, and thought she went catatonic. But on 17 June 2013, she started to recover physically, being able to sit up, went from not being able to speak at all and only mouthing words in silence to being able to speak a few words and having short conversations with me (that was when I took our three year old son in to see her, twice), to regaining the strength to move her arms.
Everyone thought she was being a miracle again, recovering. Then on 4 July 2013, her breathing became short and laboured, and blood pressure shot up. Way up. They sent her back to the hospital’s ER that night.
That was when I had to make the third difficult decision, but it was also a no-brainer. The doctor asked if I want them to resuscitate her if her heart stopped. I said no, because it would break her ribs for sure, and the prospect of keeping her alive was not good overall. My overriding goal had been to keep Winnie comfortable in her final days, that’s why the decision was a no-brainer.
*** *** ***
In the afternoon of 25 May 2013, I called all of Winnie’s close friends, telling them the score. On the next day, the visits started, and went on for two weeks until Winnie moved into the hospice. I forget just how many friends Winnie has. Friends who truly care about her, and dropped everything and came to see how she is doing.
Her eyes lit up on seeing everyone in the steady procession. She remembered everyone, and seemed more active. Her spirit was certainly lifted.
On 26 May 2013, a Sunday when the hospital is pretty quiet and hopefully not so full of germs, her oncologist even arranged to get us a small room so our son could meet mommy in a private environment. Winnie was happy to see Duncan, but she was very tired and had to go back to bed after 15 minutes.
But there was no fooling her. Everyone she knew showing up was bound to be a dead giveaway (no pun intended). As I tucked her back in bed, she asked quietly, “Am I going to die soon?”.
It broke my heart. Tore it to pieces right there and then.
I replied with a firm no. I told myself that, technically, it was not a lie, because no one knew. I told her I was not happy that she has withdrawn into herself, and that her situation is dire. I told her my support alone was no longer sufficient, and I called everyone up and asked them to help and visit, so she would remember and know just how many people care about her.
She was always the smarter one, so I was not sure she bought any of it. But I had to try.
How do you, and when should you, lie to a love one? But lie I did.
The truth is the doctor told us it could happen very quickly, if it happened. One woman deteriorated over the course of a single morning, and passed away on the day Winnie was admitted into the hospital. I called everyone because I didn’t want anyone to miss the chance to see Winnie should anything happen.
Even if the effect on Winnie seemed quite positive, that was just an accidental result, wasn’t it?
You do what you have to, and the rest is in His hands. I just prayed, asking Him to allow me to be His instrument in taking care of Winnie and Duncan for many more years to come. I wanted nothing more. I knew I had no right to ask for anything, but I asked anyway.
All I wanted was to give her a good life, after suffering the consequences of his loser father’s actions and picking up the pieces from the first thirty years of her life. All I wanted was to give her a peaceful home, so she can be a “tai tai” and go on to do what she dreamed about, write books and movie scripts. I was on the cusp of achieving that … The week before she was admitted to the hospital that last time, at the end of April, we went to a jewelry store and blew a ton of money on a diamond and two gold bracelets. The types Chinese people buy as wedding gifts to the bride, but she had always wanted something huge. Her smile was all worthwhile. I had to try.
*** *** ***
On 16 August 2013, six weeks after Winnie passed away, I went to see the clinical psychologist following my case. I asked for one at the hospital to follow my case to make sure I can function properly for my son.
She posed an interesting question: Why do I think Winnie chose me over all the other choices she had? I had put it down to my being easy to pick on and easy to “control” (half in jest, but only half), and that I am generally more honest than the guys she knew. But I forgot one thing. I remembered the next day that, after a few dates in which we talked a lot about movies, she marveled at how I seemed to think every movie I saw was a love story. No matter how boring, no matter how violent, no matter the plot, I always saw a love story. Deep down, she was a hopeless romantic, and she must have figured that she found another.
The psychologist also asked me whether I felt it was normal, what I did for Winnie this past year. I gave my standard answer, which was nothing less than truthful as far as I knew: If anyone else was fortunate enough to have had Winnie as a wife, he would have done the same. The psychologist told me that, as a matter of fact and from what she has seen on her job, no, that was not so. People like me was in the minority.
I never pursued this line of discussion with anyone, because it sounds self-serving. “Yeah, so you took care of your sick wife, la ti da. You want a medal or something?” But slowly, the gathering weight of evidence is convincing me that perhaps what I did wasn’t just the average. Perhaps I had done okay. By that, I mean perhaps I had done enough, nay, sufficiently, out of my love for Winnie that I need not feel guilty about any of it. I still cannot shake the memories of me wanting to not hear her retching in the bathroom, wanting to just get away from the flat over this past year, wanting to not come home after work, even though in the end I always did because I could not bear to leave her in the flat alone. I cannot shake the memories of me losing my temper once or twice or more. I cannot help but think I could have been better, more patient to Winnie, who was the one suffering, not me. But perhaps, just perhaps, I was sufficient.
The gathering weight of evidence is perhaps convincing me that I did manage to give Winnie a good life and true happiness. Being told that was not enough. Being slowly convinced that it is, perhaps, true, gives me some peace.
The thing is, I have always been an insecure person, ever since childhood. You may not notice, you may see right through me. And I always told Winnie that I held her up like a Ming vase on a pedestal. I don’t think I expressed it well enough, not least because I didn’t think it through, and therefore she always misunderstood me when we argued. It sounded like I was afraid of breaking her, of causing her harm or grief. But in trying to explain it to the psychologist, I suddenly realized that wasn’t it. The imagery came to my mind so many years ago because Winnie was the most precious thing to me. A person of fragile beauty, to be treasured. I held her up because I wanted to be the museum casing, I wanted to be able to provide for and protect her from the storms of this world, to give her respite. Chauvinistic perhaps, but that’s how I thought. Yet she was a very strong-willed vase, demanding great attention and upkeep (I do not mean this in any negative way), so I had always tried to keep up, guessing what she wanted and trying to do right by her. All the while, insecure and fearing I did not do well enough.
That was the basis of the vase analogy. That was why I had to do what I had to do over the past year or so. I am sure she understood it, and tried to reassure me many times. But I, in my insecurity, chose to maintain that mentality anyway.
However, I still believe that men who leave their wives to be ravaged by disease (or to face anything else) alone, if there be such men, just haven’t had the luck to marry Winnie.
The psychologist thought I was beyond hope, using that as an answer to all her questions about me.
I also put considerable weight on C.S. Lewis’ confirmation that Winnie has learned all she needed to learn in this human life, and has moved on to a more lofty existence and missions. This passage may as well be describing Winnie and I, how we loved and how we saw God’s relationship with men:
“It is often thought that the dead see us. And we assume, whether reasonably or not, that if they see us at all they see us more clearly than before. Does H. now see exactly how much froth or tinsel there was in what she called, and I call, my love? So be it. Look your hardest, dear. I wouldn’t hide if I could. We didn’t idealize each other. We tried to keep no secrets. You knew most of the rotten places in me already. If you now see anything worse, I can take it. So can you. Rebuke, explain, mock, forgive. For this is one of the miracles of love; it gives—to both, but perhaps especially to the woman—a power of seeing through its own enchantments and yet not being disenchanted. To see, in some measure, like God. His love and His knowledge are not distinct from one another, nor from Him. We could almost say He sees because He loves, and therefore loves although He sees. Sometimes, Lord, one is tempted to say that if you wanted us to behave like the lilies of the field you might have given us an organization more like theirs. But that, I suppose, is just your grand experiment. Or no; not an experiment, for you have no need to find things out. Rather your grand enterprise. To make an organism which is also a spirit; to make that terrible oxymoron, a ‘spiritual animal.’ To take a poor primate, a beast with nerve-endings all over it, a creature with a stomach that wants to be filled, a breeding animal that wants its mate, and say, ‘Now get on with it. Become a god.’”
In loving each other so fully, in accepting each other just as we were, with all our flaws and imperfections, were we not God-like?
I seem also to have come to terms with the idea that the best I can do, the most I can do right by Winnie, is to raise our son properly and give him all the love I can give, and give him all the love I had for Winnie as well. That is the primary mission now.
*** *** ***
Today, I am trying to not feel guilty about actually feeling okay. I am trying to overcome the fear that I can’t raise my son as well as my wife. I am telling myself that I will give it my best shot.
But I still miss her. I so miss her. Nothing is the same without her being a part of it. Nothing is worthwhile without her sharing in the joy of achievement.
By Aaron Mak
Aaron describes himself as a, “mining engineer by training, civil engineer by vocation, an engineer at all by necessity, and probably a softy at heart”. Good thing he lives today and not thirty years earlier, else men like him may be frowned upon. He may be a Mr. Mak and his wife may have been Ms. Winnie Lo, but they both know she was Mr. Lo
He was, and still is, Mrs. Lo.