A Special Companion on a 5K Journey

by Guest Contributor
2011-07-01


By Bonny Chan(雪芹翻譯)

我相信很多《生命恩泉》在豐業銀行多倫多湖濱馬拉松/步行(Scotiabank Toronto Waterfront Marathon / Walkathon 簡稱 STWM)的籌款隊伍參加者都和我一樣,在出發之前會有些忐忑。譬如我會擔心當天天氣會怎麼樣,應該穿多厚的衣服;到底應帶防曬霜、帽子,還是雨傘或雨衣等等。我們在這令人興奮的大日子來臨前都會做一些準備。但和文氏家庭為了這活動所作的準備相比,真是微不足道。

Jeffrey Man 是一個十年級的男孩,在他九個月大的時候開始出現脊椎肌肉萎縮。他全身癱瘓,唯一能作輕微郁動的地方就是右手指和手肘。他所有的日常活動都需要借助輪椅和他人的幫助。儘管他的身體有嚴重的缺陷,但他是一個非常樂觀、積極、和有信德的人。幾年前,《生命恩泉》曾在電視節目中報導過他的故事。Jeffrey 熱愛參加各種團體活動。雖然困難重重,但是他的父母總是盡最大的努力鼓勵他像正常孩子一樣生活。看到去年有很多坐在輪椅上的殘疾人參加 STWM,我們就想也許 Jeffrey 會有興趣參加這項活動並從中穫得樂趣。所以今年我們邀請他們一家來參加這次五公里步行,而他們也非常高興地接受了這個邀請,參加了今年的《生命恩泉》步行籌款隊伍。

星期天的早上,當我在國家展覽館(The EX)見到 Jeffrey 時,我內心的喜悅實在難以形容。他臉上露出了他的招牌式笑容。他的父母,Jessica 和 Eric 也非常開心。我特別感謝 Jeffrey 的父母為了把他帶到市中心參加步行籌款所作出的準備與安排。在到來之前,Jessica 為了找一條為他們最方便的路做了很多資料搜集。因為很多道路會因此次活動關閉,所以她本來想乘公共交通工具。可是她發現能到達市中心的地鐵有傷殘人士的設施,但是接駁到馬拉松起點(國家展覽館)的街車卻沒有,那就意味著他們不能選擇公共交通了。最後他們決定開車到 The EX,把車停在那裡,不過 Eric 在活動結束後要返回起點取車。這的確挺麻煩的,但這對充滿愛心的父母願意為了Jeffrey 做任何事。

天氣很冷,風也很大,但這一點也沒有影響Jeffrey 的心情。當活動開始時,他開心地看那些走著、跑著的人,尤其是他周圍那些身穿奇裝異服的人們。他控制著他的高科技輪椅,上面有鐳射感應器,可以感應他右手指輕微的移動。他的輪椅「馬力」很強,每小時最快能走四公里呢。本來他可以很好地操縱輪椅,但因為天冷、風大,慢慢變得困難多了。主要是因為他太冷,他的手指凍僵了,很難再去移動和控制輪椅的鐳射感應器。因此 Jessica 試圖用人工控制系統去操作輪椅,但是比 Jeffrey 用鐳射感應器慢得多。為了讓輪椅走得快點,Eric 也不時地推一推,但他也推不了多久,因為輪椅實在太重了,有 300 磅呢!!這個三個人的小隊伍輪流推著這個大輪椅。當Jeffrey 的手指暖和一點時,他就自己操作;當他手指又凍僵或者發麻時,Jessica 就用人工系統操作,Eric也幫忙推一會。

其他參賽者也幫忙推輪椅,但也沒有一個人能推很久,因為輪椅實在太重太重。一路上還不時下著微雨,Jessica 就不得不為 Jeffrey 撐起傘擋雨。儘管有各種困難,但文氏家庭的每個人仍然非常喜樂與積極。沒有人抱怨什麼。和他們一路走來,我深深地被這個家庭的愛與團結打動。整個過程,Jessica 與 Eric所重視的就是實現 Jeffrey 參加此次活動的願望。當Jeffrey 最終到達終點的時候,很多《生命恩泉》的隊友都在那裡為他歡呼。他穿過終點後,當 Paul Yeung把獎牌掛到他脖子上時,他多麼自豪,多麼喜樂!

當其他選手到達終點後,他們可以輕鬆地乘公共交通或乘坐他們的車子離去。但是對於文氏家庭來說,他們的旅程還未結束。Eric還得返回賽事的起點—國家展覽館取車,再回到終點線接 Jessica 和Jeffrey。本來他是計畫乘搭 STWM 安排的穿梭巴士,但看來穿梭巴士的班次很疏落,他就接受了我們的建議乘坐另一位隊員 Vince 的車子回到起點取車。我和另一個隊員 Alice 陪著 Jessica 和 Jeffrey 等 Eric。

天太冷了,我們本來打算在 Yonge 街上的 Tim Horton's 咖啡店裡等 Eric,但是因為店子的門前有一臺階,Jeffrey 進不了去。路上還有一些快餐店,但是門前大都有臺階。我第一次意識到在多倫多這個表面上看似發達先進的城市,傷殘人士要面對多少挑戰和困難。一個臺階,對於平常人來說,只需邁一小步,但對於輪椅上的人來說,就是一個大障礙。真是一個可悲的事實。

當我們進入 Bay 百貨公司的大堂取暖時, Jessica 要花了 15 分鐘按摩 Jeffrey 的手,為了讓他能和暖些。我有點過意不去,因為讓 Jeffrey 參加這次五公里步行,害得他如此受凍。但是當我們在大堂等待時,Jeffrey 卻非常開心地看著那些人從旋轉門中走進走出。我不明白旋轉門有什麼好稀奇的。Jessica 就跟我解釋說,他們住的地方附近幾乎沒有旋轉門,而他們也不常到市中心,出入一些高樓大廈。Jeffrey 在如此稀鬆平常的事物中也能發現樂趣。

當我們在等 Eric 時,Jessica 告訴我她在準備此次步行時非常擔心。因為一旦他們開始步行,她就沒法再返回他們車裡,她必須確定帶備了 Jeffery 可能需要的所有東西。在一個超大的背囊裡,她帶備了所有的藥、醫療設備、食物、雨衣等等。他們也必須計劃好什麼時間出發、在哪裡吃早餐、去洗手間,以此確保 Jeffrey 在步行時不用去洗手間(儘管步行路程中設置了流動洗手間,但是乘輪椅的人進不去。)我被深深地感動了,他們如此充分地計劃和準備,就是為了參加這次活動來支持《生命恩泉》。更為觸動的是他們對 Jeffrey 的無條件的愛。他們當初可以因為種種困難,輕易拒絕我們的邀請。但是出於對 Jeffrey 的愛,對天主的愛,他們願意做出所有的犧牲。

因為封路和交通堵塞,Eric 最後花了兩個小時才返回。而我們最後跟《生命恩泉》整個隊伍匯合時已經是下午4:45,大部分參加者都已經走了。雖然因為等得太久,錯過了慶祝的時刻,但是我仍然很開心我有機會在整個過程中陪伴文氏家庭。我雖然之前曾多次探訪他們,但從未在路上與他們同行。這個家庭是如此地令人深受啟發與鼓舞。他們共同克服日常生活中所面臨的一切挑戰。他們是一段聖經章節的完美見證:「愛是凡事包容,凡事相信,凡事盼望,凡事忍耐。愛是永不止息。」(格前13:7-8)

願天主保守Jeffrey的身體,並祝福他的家人更有力量和勇氣去面對生命中的一切挑戰。

看過這篇文章後,Auntie Annette(黃翠紅阿姨)寫給文氏家庭的信息:

Jeffrey、Eric、Jessica,我為你們感到驕傲,雖然我們從未相見,雖然我身在千里之外的香港。

你們用事實告訴我們,你們驚人的勇氣,竭盡全力的愛。我愛你們在艱難時刻仍然保持的笑容,你們的笑容; 也使我想起真福德蘭修女的話:

生活,是夢想,實現它;生活,是挑戰,戰勝它;生活,是愛,享受它。

願我們能繼續實現夢想,迎接生活的挑戰,享受全部的愛。

A Special Companion on a 5K Journey

By Bonny Chan

I believe many of us who participated in the Scotiabank Toronto Waterfront Marathon/Walkathon this past Sunday as part of the FLL team had experienced a certain level of anxiety before the event. For instance, I wondered what the weather would be like; I debated how many layers of clothing I should be wearing; I wasn't sure whether I should be bringing sunblock and a hat, or an umbrella or poncho... We all did some preparation to get ready for this exciting fundraising event. But compared to what the Man's family had to go through to prepare for the event, our effort was really insignificant.

Jeffrey Man, a grade 10 boy who has been suffering from spinal muscular atrophy since he was nine-months old, joined us for the 5km walk this year. He is paralyzed and all that he can move are his right fingers and elbows to a very small degree. He is wheelchair-bound and relies on othersí assistance for all of his daily activities. Despite his severe disability, he is a very bright, positive and faithful person. Fountain of Love and Life has covered his story in one of our TV episodes a few years ago. (https://www.youtube.com/watchfll#p/search/0/JG6IS14qMt8) Jeffrey loves to socialize and participate in all kinds of events. His parents always do their best to enable him to live as normal kids do despite all the challenges involved. After seeing the large number of disabled persons participating in the STWM walkathon in their wheelchairs last year, we thought Jeffrey might be able to join us this year and have some fun. So we invited his family to join the FLL team at the walkathon this year and they gladly accepted the invitation.

When I saw Jeffrey at the Exhibition Place on Sunday morning, I could tell he was really excited. He had his signature big smile on his face. His parents, Jessica and Eric, were also very happy. I was thankful that they made all the necessary arrangement to bring Jeffrey downtown for the walk. Before the event, Jessica did a lot of research on the best way for them to get to the walkathon starting point. She wanted to take public transit as there would be a lot of road closures in the downtown area due to the event. However, she found that although the subway is accessible, streetcars are not, and that meant they would not be able to reach the starting point by public transportation. They ended up driving to the EX and parked there, but Eric would have to go back to the starting point after finishing the 5K walk to pick up his car. It was quite a bit of hassle, but these loving parents would do anything for Jeffrey.

The weather was quite chilly and windy, but it didnít dampen Jeffrey's spirit. Once the walk had started, he had fun watching the walkers, runners, especially those dressed in all kinds of interesting costumes, around him. He controlled his high-tech wheelchair, which has some laser beams for sensing the slight movements of his right fingers. His wheelchair is very powerful and can go at a maximum of 4km/hour. At first he could control it pretty well, but because it was quite windy and chilly, he started to have some difficulty. It turned out that since he felt cold, his fingers were kind of frozen and could hardly move to control the wheelchair's laser sensors. So Jessica tried to use the manual control to operate the wheelchair, but it was much slower than Jeffrey operating it through the laser sensors. To make the wheelchair move faster, Eric also pushed it from time to time, but he couldn't do it for too long because the wheelchair weighed 300lbs! The three of them took turns to operate the wheelchair. When Jefffrey's fingers had warmed up a bit, he would operate it on his own; when his fingers felt numb or frozen, Jessica would take over and use the manual control; and Eric would take over and push for a while.

Some other participants helped push the wheelchair too, but no one could do it for long as it was way too heavy. To make it more challenging, there were some light showers from time to time, and Jessica had to hold the umbrella to shelter Jeffrey. Despite all these challenges, the entire Manís family remained very joyful and positive. No one complained about anything. Walking with them along the way, I was really touched by the love and unity of this family. Jessica and Eric's focus was to fulfill Jeffrey's wish of participating in the event. When Jeffrey finally reached the finish line, a number of FLL team members were there to cheer for him. You should see how proud and happy he was when he passed the finish line and when Paul put the medal around his neck!

For the rest of the participants, reaching the finish line was the end of the story. They could just take the TTC or hop into their cars. But that's not the end of the walkathon story for the Man's family. Eric still had to go back to the EX to pick up his van and then pick up Jessica and Jeffrey near the finish line. Originally he planned to take the shuttle bus arranged by the STWM organizers, but since it appeared that the shuttle would not run frequently, one of our team members, Vince, offered to give him a ride to the EX. Another team member, Alice, and I accompanied Jessica and Jeffrey to wait in a small lobby at the Bay.

It was pretty chilly after the race, and we wanted to wait for Eric in a Tim Horton's on Yonge Street, but the step at the door made it impossible for Jeffrey to go in. There were actually a few other fast food places along the way which also had a step at the door. For the first time, I realized the challenges that disabled people face in this seemingly advanced and accessible city of Toronto. Such an easy step for us can be a barrier that someone in a wheelchair cannot overcome. It's a sad reality.

Once we got into the Bay lobby to warm up, Jessica spent at least 15 minutes massaging Jeffrey's hands to warm him up. I felt sorry that Jeffrey felt so cold from the 5K journey. While waiting in the lobby, he had a lot of fun looking at people passing through the revolving doors. I didn't understand what was so fascinating about revolving doors. Jessica explained to me that there are not a lot of places with revolving doors near where they live, and they don't often go downtown or into big office buildings. Jeffrey finds pleasure in these simple things.

As we were waiting for Eric to come back, Jessica told us how anxious she was when preparing for the walkathon. Since they would not be able to get back to their car once they started the walk, she had to make sure she had brought everything that Jeffrey would possibly need with them. In a big backpack, she had packed all his medication and medical equipment, food, raincoat, etc. They also had to plan when and where they would eat breakfast, when and where to stop for washroom-break on their way down so that Jeffrey would not have to use the bathroom during the walk. (Although there were porta-potties along the way, they were not wheelchair accessible.) I was really touched by the amount of planning and preparation they had to do in order to participate in the walkathon to support FLL. Whatís even more touching is their unconditional love for Jeffrey. It would be so easy for them to turn down our invitation to participate in the walkathon because of all the hassles involved. But out of their love for Jeffrey and their love for God, they were willing to make all the sacrifices. It ended up taking Eric almost two hours to go from Eaton Centre to the EX and back due to the road closures and traffic jam. We finally got to the gathering for Team FLL at around 4:45pm, when most of the participants had left. Although it was a long wait and we missed most of the celebration, I was really glad that I had the opportunity to journey with the Man's family all the way to the "finishing line". I have visited their home quite a few times, but I had never journeyed with them on the road. It was really eye-opening and inspiring to see this family in action and to witness how they overcome the challenges that they face in their daily lives together. They are such a perfect testimony of the bible verse: "Love bears all things, believes all things, hopes all things, endures all things. Love never fails." (1 Corinthians 13:7-8)

May God bless Jeffrey with good health and his family with strength and courage to face all of life's challenges.

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