Manna issue 81 - My Constant Companion 一直都在的同伴
God’s faithfulness towards a
brother living with a painful
condition.
弟兄活在困苦情況中，但神還是很信實
Zhang Guo Hua—Singapore 新加坡
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.
在嗎哪73期裡面，
Fui Khin Wong 姐妹分享她的兒子 Guo Hua，
在出生剛好幾個月的時候，
被診斷出有血友病，是一種遺傳性的血液疾病。
在本期中，Guo Hua 弟兄，
要和我們分享他自已的故事。
Pain is my constant companion. 痛苦一直是我的同伴
CHILDHOOD 小時候
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.
當我是一個小嬰孩的時候，
我被診斷出血友病 A 型，
就是血液中凝血因子 VIII 不足。
這個意思就是，輕微的碰撞或割傷，
會讓我比正常人流更多的血。
最危險的情況就是一些肉眼看不到的事 -
也就是體肉有出血。
不只這樣，出血也會自然發生。
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.
雖然血友病沒有解藥，
這種情況可以透過持續注射缺乏的凝血因子，
或是透過血漿粹取物的輸血，而加以控制。
因為凝血因子 VIII注射價格很昂貴，
大部份的時候，我的父母只能依靠禱告，
來撐過我出血發作的情況。
當我五歲的時候，1980年，
我的母親帶我和其他的兄弟到新加坡去生活，並且接受教育。
我記得小時候很常到醫院，因為膝蓋出血。
膝關節和膝蓋的傷害讓我很虛弱，走路也很困難。
當我有出血的情況時，會有一段很長的時間不能走路，
這也會讓我的膝部韌帶萎縮。
到最後我失去全部走路的能力，
我的母親全部時間，一定要開始帶著我四處跑。
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.
當我在國小的時候，情況就這麼發生了，
所有的課都在同一間教室上。
若我們要四處移動，
我有一些好朋有會幫忙背我。
由我一直有出血的情況，
我錯過了幾乎學校三分之一的時間。
ADOLESCENCE 青少年
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.
當我13歲進入中學的時候，
我很煩惱自已要怎麼適應情況，
因為很多課程在不同的教室，
有些教室甚至是在樓上。
我們要四處移動，取決於我們修了什麼課。
就是這麼的巧合，事情就這麼發生了，
因為我國小的幾個朋友和我是在同一班，
他們繼續幫忙背著我，往返於不同課程的教室。
從中學第二年開始，我有一群好朋友，
他們都繼續幫忙背我四處跑，直到四年後我們從畢業。
事實上，他們其中一位甚至想要和我一樣，
讀相同的大學先修班，因為他為我的移動力很擔心。
我的母親和我都勸他，不要讓我的情況來影響了他大學先修班的選擇。
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.
我仍然可以很鮮明的想起，
自已在青少年時，所發生一些很重大的出血事件。
第一件是"披薩事件"，發生在我13歲的時候。
這絕對是單一出血事件之中，最嚴重的案例。
吃完披薩之後，我的左手對開始腫了起來。
情況變的很嚴重，我就開始抽筋。
我的父母馬上叫了救護車，帶我衝到醫院去。
二天後我醒了過來。
醫生診斷是食物中毒。
然後，我們後來才學到，吃了某些食物，
例如磨菇，會稀騵血夜，
惡化任何出血嚴重的程度。
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.
另一個意外是，當我的朋友背著我，
他卻滑了一下；
我摔了下來，並且扭傷了腳踝。
這個傷害立刻就患部腫了起來，我就一定要回家。
雖然這次腫起來，並沒有像披薩事件那麼嚴重，
但是卻持續了很久的時間。
即使在腫脹消退之後，
我仍會在晚上，因為很痛而醒了過來，持續了好幾個月。
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.
另外有一次，在考試期間，
我有內出血，我的右手掌變得很腫，
我甚至沒辨法握筆。
我甚至有得到額外延長的考試時間，
但卻一定要用左手來書寫。
我才剛剛好可以通過考試，
因為改分數的老師，有很大的困難，
來辨視我寫的很差的筆跡。
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.
當我年輕的時候，即使我有很多痛苦的出血事件，
我從來沒有灰心，或是覺得想要放棄自已的生命。
無論什麼時候，痛苦消失了，
我就退回到舊的自我。(不論好壞)
我的慢性疾病，並沒有真的有激勵到我，成為一個更好的人 -
在這方面的事情，反而是我的母親在鼓勵我。
我對那些會自殺的人，是完全沒有同情心。
我年輕的內心告訴我自已 -
我流血的情況，最後一定會停下來 -
我只能忍耐，接受這些痛苦，這樣才能打敗它。
一旦痛苦消失之後，我就會變得快樂。
ADULTHOOD 成年
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.
大學的時候，要四處走就是一個更大的問題，
因為校園很大。
在這段時間，那時各大學都還沒有對輪椅友善的設計。
事情就又這麼發生了，從我大學先修班畢業的另一個坐輪椅的學生，
也來此註冊，和我一樣在同一個科系上課。
祂的父親向大學的資產發展室投訴和請願，
想要坐輪椅的人可以更加便利的使用校園。
一年之內，電腦科學系，也就是我學習的科系，
就在各處設置了坡道，成為了大學裡面第一個科系，
可以讓坐輪椅的人很容易使用。
後來，這就變成了大學的政策，
每個新的大樓都有殘障公廁，升降梯及坡道。
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.
在我大學學年中，事情就這麼又發生了，
我交了許多好朋友，他們幫助我，讓我坐在輪椅上帶我到處走。
我仍然有出血的情況，但隨著我逐漸長大，
出血的情況和疼痛也越來越少。
事實上，大學期間的生活，
就是一段我感覺在身體上最好的一段時間。
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.
在這段時間，其中一個重大事件，
就是我有尿道出血的情況。
這情況沒有疼痛，但幾天之內，卻在尿液中流出大量的血。
經過了醫院的同位素追縱之後，
醫生仍然不了解到底有什麼問題。
經過一些時間，後來結果是，這個問題就完全消失了。
The Cycle of Pain and Depression 痛苦和沮喪的循環
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.
經過大學的學習，我工作了一段時間，
然後又回到大學繼續博士學位。
這對我是一段又黑暗又困難的時期，
我自已的研究有很多問題，
壓力又混合了右肩出血的情況。
直到那個時間，我從來沒有在肩膀上關節上，有出現過任何問題。
第一次發生的時候，情況很嚴重，
出血集中累積在關節，形成了脫臼。
我感到極度的疼痛。
右肩出血的情況開始循環出現，持續了好幾年。
即使要注射凝血因子，也成為了問題，
因為我的血管越來越難找到。
有時候，醫生要試很多次，才能正確。
有一次，醫生試了13次才能成功的完成注射。
即使是要治療我的情況，這個治療本身也變成了一種折磨。
我請教了專家，經過謹慎的考慮之後，
他最好的建議，就是試著以這種發展的情況，好好的活著。
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.
結果是，我的長官很體貼，並且同情我身體的情況。
無論什麼時候肩膀流血之時，我都被允許可以休息。
然而，我的研究有一段長時間，卻沒有下文，
隨著我看起來永無止盡的肩膀問題，
這種情況造成了我精神上長期的低潮。
我甚至開始變得很憂鬱，
就像我年輕時，所認為那些很軟弱的人一樣。
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 fulltime
at the university, and that is
pretty much where I am today.
然而幾年之後，結果一切情況都變的更好了。
在看起來似乎經過了好幾年，
我完成了博士學位，右肩的出血也停止了。
自那時候開始，我已經很少任何重大流血的情況。
我也開始全職在大學工作，
也是我今日大約的情況。
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.
2015年，二年一次我會去看血友病專家，
他提醒我，我比大部份的血友病患者都過得更好 -
我沒有用很多凝血因子 VIII，
而關節的傷害並沒有擴展開來，
像大部份有這種疾病的人會有的情況。
我一年只需要注射一次或二次。
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.
我認為，自已出血的情況已經減少，
因為我的關節傷的很大，也纖維化，
所以一定會比較少血管，
而且一直坐在輪椅上，限制了行動。
但是血友病專家卻糾正我。
許多血友病患者有比較更差的情況。
事實上，他過去建議過許多換膝蓋的手術，
特別是對輪椅上的病患，
他們的關節都因流血傷的很重，而且一直持續很疼痛。
最慘的情況是，病人會對凝血因子 VIII 產生抗體反應，
他們就絕對不能作任何事情，只能開止藥給他們。
有時候，這會導致他們對止痛藥上癮，
他們若依賴藥物，就讓他們難以找工作，
在財務上自已自足。
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.
他所說的話，實在給我很驚訝。
我認為，身上發生的一切情況，
只不過是一種"事情就這麼發生"，
或是"結果就是這樣"的例子，
我曾經認為，我的情況不會變得更壞了。
但是實際情況卻完全不是這麼一回事；
我從來沒有看過最淒慘狀況的最低點。
我的生活，並不是一連串 "事情就這麼發生"，
或是"結果就是這樣"的事件，就可以解釋得了。
我並不是用一直忍耐，對抗，或是擁抱接受，來克服我的問題，
情況有可能很快就變得不一樣，
我甚至現在也有可以不會在這裡。
然後我才了解，當我很注意自已身上的病痛，
注意在學業上的困難，注意在好好治療疼痛，
神從以前一直一路以來都和我同在。
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.
是的，雖然我已經走過死蔭幽谷，
一路在崎嶇難行的碎石路上跌跌撞撞，
偶爾發怨言說一路走來好艱難，
我卻不能注意到，神已經路上一切掉上來的大石頭，
而這些大石頭是一定是可以壓垮我，讓我死掉。
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!
即使我落入了補鳥人的網羅，
(詩 91：2-3)
我都不會注意到，
因為神會讓我可以脫逃通過。
這些年來，不只是在我身體上的情況，
都有很多朋友來幫忙，
還有改變了環境，讓我有可能像正常人一樣生活，
這一切都不是僅僅偶然發生的而已。
一切都只因為神一直與我同在。
Walking with God as My Guide 與神同行，給神帶領
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.
大部份的時間，我所看到的神，是一個模糊的身影，
因為我也是很注意在要如何處理病痛。
然而誰會比我的病痛更加注意我呢？
就是神一直陪伴在我身邊。
現成就是我要來到神面前的時間，
我要感謝祂為我所作的一切事，
當我在神身後跟隨的時候，讓祂在前面帶領我。
而我的雙眼要全力注意著祂。
Let me end with these verses that
remind me of God’s presence in my
life:
最後結束的時候，
讓我用這些提醒我，神在我的生命中與我同在的經節，
與大家分享：
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)
3他苦煉你，任你飢餓，將你和你列祖所不認識的嗎哪賜給你吃，
使你知道，人活著不是單靠食物，乃是靠耶和華口裡所出的一切話。
(申 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)
26他從一本（有古卷作血脈）造出萬族的人，
住在全地上，並且預先定準他們的年限和所住的疆界，
27要叫他們尋求神，或者可以揣摩而得，其實他離我們各人不遠；
(徒 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)
20看哪，我站在門外叩門，若有聽見我聲音就開門的，
我要進到他那裡去，我與他他與我一同坐席。
(啟 3：20)
My God, my Lord, my Christ, is my
constant companion!
我的神，我的主，我的救主，
一直陪伴在我身邊！
新加坡學制
小學 6年
中學 4-5年
大學先修班/高中 2-3年
大學 3-4年
小頁 markvmax@hotmail.com
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