Guo Hua Zhang—Singapore
In Manna issue 73, Sister Fui Khin Wong shared how her son, Guo Hua, was diagnosed with hemophilia, a hereditary blood disease, at just a few months old. In this issue, Brother Guo Hua shares with us his own story.
Pain is my constant companion.
When I was a baby, I was diagnosed with Hemophilia A, which is a deficiency in blood clotting factor VIII. This means that the slightest knock or cut will cause me to bleed more than normal. The most dangerous thing is what the eye cannot see—the bleeding could be internal. Not only that, the bleeding can start spontaneously.
Though there is no cure for hemophilia, it can be controlled with regular infusions of the deficient clotting factor or a transfusion of blood plasma extract. As factor VIII infusions are expensive, most of the time, my parents just relied on prayers to get through my bleeding episodes.
When I was five years old, in 1980, my mother brought me and my brothers to live and be educated in Singapore. I recall a childhood of frequent trips to the hospital because of bleeding in my knees. The damage to my knee joints and knee caps was debilitating, and walking became difficult. Whenever I suffered from a bleeding episode, I would be unable to walk for a long period of time, which also caused my knee ligaments to shrink. Eventually, I lost the ability to walk altogether, and my mother had to start carrying me around all the time.
It just so happened that when I was at primary school, all the lessons were conducted in one classroom. If we had to move around at all, I had a few good friends who would piggyback me. Given my regular bleeding episodes, I missed almost one third of my time at school.
When I entered secondary school at the age of thirteen, I was worried about how I would get around as the lessons were in different classrooms, and some classrooms were on upper floors. We had to move around depending on the subjects we took. It just so happened that I was in the same class as a few of my friends from primary school, and they continued to give me piggyback rides between lessons. From Secondary Year 2 onwards, I had a group of good friends who constantly piggybacked me around until we graduated from secondary school four years later. In fact, one of them even wanted to attend the same junior college (JC) as I did as he was worried about my mobility. My mother and I convinced him not to let my situation influence his choice of JC.
I can still vividly recall some major bleeding episodes I had as a teenager. The first is “the pizza incident,” which happened when I was thirteen. This was definitely the worst case of an isolated bleeding episode. After eating pizza, my left elbow started to swell. It became so bad that I started having a fit. My parents quickly called an ambulance and rushed me to hospital. I awoke two days later. The diagnosis was food poisoning. However, we later learned that eating certain foods, such as mushrooms, can thin the blood and increase the severity of any bleeding.
Another incident was when my friend slipped while he was piggybacking me; I fell off and sprained my ankle. It immediately swelled up, and I had to go home. The swelling was not as bad as the pizza incident, but it lasted for a long time. Even after the swelling subsided, I would still wake up at night in pain for many months afterwards.
Another time, during an exam, I had internal bleeding and my right palm became so swollen that I could not even hold a pen. I was given extra time, but had to use my left hand to write. I just barely passed because the teacher who marked the paper had great trouble deciphering my bad handwriting.
Even though I had so many painful bleeding episodes when I was young, I was never depressed or felt like giving up on life. Whenever the pain disappeared, I was back to my old self (for better or worse). My chronic illness did not really motivate me to be a better person—it was my mother who motivated me in that respect. I had no sympathy whatsoever with those who took their own lives. My young mind reminded me that every bleed would eventually stop—I simply had to endure and embrace the pain in order to beat it. Once that pain was gone, I would be happy again.
At university, getting around was a much bigger problem because of the size of the campus. In those days, universities were not designed to be wheelchair friendly. But it just so happened that another wheelchair user from my JC was also enrolled to study in the same department as me. Her father complained and petitioned the university’s Estate Development Office to make the campus more wheelchair accessible. Within a year, the computer science department, where I studied, had ramps installed everywhere, becoming the first department in the university that had full wheelchair access. Later, it became university policy that every new building would have disabled toilets, lifts and ramps.
During my undergraduate years, it just so happened that I made many good friends who helped me and pushed me around in my wheelchair. I still had bleeding episodes, but they became less frequent and less painful as I grew older. In fact, undergraduate life was one of the times when I felt physically at my best.
One of the major incidents I had during this period was when I had bleeding in my urinary tract. There was no pain, but I was passing a large amount of blood in my urine for a few days. After going for an isotope trace, the doctors still could not figure out what the problem was. As it turned out, after some time, this went away completely.
The Cycle of Pain and Depression
After my undergraduate studies, I worked for a while and then returned to university to do my PhD. This was a dark and difficult time for me. I had problems with my research, and the stress was compounded by bleeding problems with my right shoulder. Up until then, I had never had any problems with my shoulder joints. The first time it happened, it was so severe that the blood collected in the joint and forced a dislocation. I was in excruciating pain. That kicked off a cycle of right shoulder bleeds that lasted for a few years. Even getting clotting factor infusions proved to be a problem as my veins were hard to locate. Sometimes the doctors took many attempts to get it right. Once, the doctor took thirteen attempts to successfully administer the injection. Even being treated for my condition became a real ordeal in itself. I consulted a specialist and, after careful consideration, his best advice was to just try to live with this development.
As it turned out, my supervisor was understanding and sympathetic to my physical condition. I was allowed to rest whenever my shoulder bled. However, my research went nowhere for a long time, and, along with my seemingly endless shoulder troubles, this resulted in a spiritually low period for me. I even started to despair, just like those people I thought were so weak when I was younger.
After a few years, however, as it turned out, things did get better. After what seemed like ages, I completed my PhD and the bleeding in my right shoulder stopped. Since then, I have rarely had any major bleeding episodes. I also started working full-time at the university, and that is pretty much where I am today.
Seeing My Condition in a New Light
In 2015, during one of my bi-annual visits to my hematologist, he remarked that I was doing better than most hemophiliacs—I did not use much factor VIII, and the damage to my joints was not as extensive as that suffered by many people with my condition. I only required one or two injections a year.
I thought my bleeding had diminished because my joints were so damaged and fibrous that there must be less blood vessels, and that being in a wheelchair restricted my movement. But my hematologist corrected me. Many hemophiliacs are in worse condition than me. In fact, he had recommended many knee replacement surgeries, especially for wheelchair users whose joints were so damaged by bleeding that they were in constant pain. In the worst cases, patients would develop immunity to factor VIII and absolutely nothing could be done for them except to prescribe painkillers. This sometimes leads to an addiction to painkillers, and their dependence on drugs can make it hard to find work and support themselves financially.
What he said struck me. I thought that everything that had happened to me was just a case of “it just so happened,” or “as it turned out.” I had thought my condition could not get any worse. But that is not the case at all; I had not seen rock bottom.
My life was not just a series of events that could be explained by “it just so happened” or “as it turned out.” I did not overcome my problems by just enduring, fighting, and embracing the pain. Things could have easily turned out differently and I would not even be here now. Then I realized, while I was so focused on the pain, on my struggles with my studies, and on working through my pain, God had been there all along.
Yes, though I had walked through the valley of the shadow of death and had stumbled along its rocky road, complaining now and then about the tough journey, I had failed to notice that God had removed all the falling boulders, which would have certainly crushed me to death.
Even if I had run into a fowler’s snare (Ps 91:2–3), I would not have noticed because God would have made an escape for me to run through. Not just in terms of my physical condition, but the friends who have helped me all these years, the circumstances that made it possible for me to live as normally as I could, none of this was mere happenstance. It was only because God has always been there!
WALKING WITH GOD AS MY GUIDE
Most of the time, I saw God as a blurry figure, because I was too focused on dealing with the pain. But more so than the pain, it is God who has been my constant companion. Now it is time for me to come before God, to thank Him for all He has done, and let Him lead the way while I follow from behind, with my eyes fully focused on Him.
Let me end with these verses that remind me of God’s presence in my life:
So He humbled you, allowed you to hunger, and fed you with manna which you did not know nor did your fathers know, that He might make you know that man shall not live by bread alone; but man lives by every word that proceeds from the mouth of the LORD. (Deut 8:3)
And He has made from one blood every nation of men to dwell on all the face of the earth, and has determined their preappointed times and the boundaries of their dwellings, so that they should seek the Lord, in the hope that they might grope for Him and find Him, though He is not far from each one of us. (Acts 17:26–27)
Behold, I stand at the door and knock. If anyone hears My voice and opens the door, I will come in to him and dine with him, and he with Me. (Rev 3:20)
My God, my Lord, my Christ, is my constant companion!