Beyond Pain: Front and Backstage of EB Fair

撰文╱吳浩賢@南無南漫home
Written by Adrian Ng @Namo Collective 

【以下為改編版本，原文稿刊於獨立評論@天下讀者投書】

「泡泡龍」是一種原名為先天性表皮鬆解症（Hereditary Epidermolysis Bullosa）的罕見遺傳性皮膚病。由於表皮與真皮的連繫基因缺陷，皮膚異常脆弱。輕微摩擦或碰撞，都可能造成破皮膿皰。傷口不僅遍佈全身外膚，甚至包含口腔、食道與腸胃黏膜，讓進食、行走、換藥都成為每日必須面對的痛。

疼痛不僅是病情上，也在外界看待他們的眼光裡。患部因反覆受傷，造成肢體攣縮、傷口異味等外顯病徵，都造成病友成長過程中要面對大量異樣眼光。這些眼光不一定帶著惡意，有時卻是出於不知所措。不知道該如何對話、接觸。長久下來，病友相對難以開啟對話，慢慢對社交習慣退縮，表達越少，理解越遠。

上台前的那道階梯

這場園遊會是關於勇氣、信任與愛的分享。泡泡龍病友協會2025年辦了一系列從心理覺察到口語訓練活動，陪伴病友練習把生命故事梳理，學習看見自己念頭背後的感受，練習如何講述內心感受。一步步將自我聲音從內心傳到嘴邊，再從室內演練到準備踏上大遠百的舞台。

讓故事順利被看見，幕後同樣需要細膩的準備。承接一場罕病公益活動，得先深入病友、家屬、捐款者、醫療專家多個視角，理解每個持份者的心境，才能完整呈現議題想帶出的信念。登上舞台以前，不到一個月的籌備期，更讓緊張度大幅升級。每天皆先鋒夜般趕工，胼手胝足，跨越一道又一道難關

第一道難關，建立信任。首次加入泡泡龍每週六的線上聚會時，會議裹有十幾人，但開著鏡頭的，就只有我們與協會執行長國耕。那時，我們心裹就感覺到對病友而言，信任新面孔並非一件輕易的事，連打開鏡頭，也會有所疑慮。為了讓大家了解，我們並非傳統公關公司，決定逐一走到鏡頭前，介紹每一位工作人員，說出為什麼想投入這場活動。

就這樣整個九、十月的周末，邊聆聽病友們的演講排練，邊聊聊這陣子的感覺，一點一滴織起彼此的關係。除了固定參加線上聚會，我們亦安排了兩場訪談。

親身互動後，鬆動了我對泡泡龍的既定印象。過去，在媒體上看到的病友形象，總伴隨著憂傷音樂與同情敘事，是相較弱小的狀態。但真實相處會發現，他們在行為與言語間，展現的其實就是一群再自然不過，活得真摯、各有性格的個人。他們不需要被過度同情，只想被平等對待，像對待每個普通人一樣，看見他們的光芒，也接納他們的脆弱。

要像明星般出場

難關之二，身體限制。因為疼痛，病友多半以輪椅扶助移動，也需避免長時間曝曬在陽光下。要在戶外大型場地完成發表，對病友而言，是鉅大的挑戰。一方面要忍耐汗液滲入傷口，一方面是眾目睽睽下披露心靈的壓力。

出場前沙龍照拍攝過程

怕傷口滲血弄髒衣物、擔心材質過粗磨擦皮膚，病友在選擇衣服時，多半以深暗色系或柔軟棉質為主，幾乎不太添購新裝。但既然是活動的主角，理應也要亮麗登場吧！於是，前一天彩排時我們特別請造型師，根據每位的個性設計個人造型，並送到飯店予明天的主角們，當作小驚喜。有位病友一看到充滿活力的「點點裝」，立刻雀躍地說：「明天我就穿這一件上台！」

活動當天，病友和家屬陸續步入貴賓室，臉色難掩緊張神情。造型師一邊梳理髮型，一邊請病友為自己挑選飾品，作上台前最後點綴。來回討論間，開始拿着飾品問：「我戴這樣是不是比較帥氣？」原本拘謹的氣氛，在這些小小互動中有了細微的變化。

梳扮好之後，我們邀請病友移步旁邊的攝影棚，拍下一幅沙龍照。起初面對鏡頭大家都有些靦腆，但隨著快門喀嚓聲此起彼伏，大家紛紛開始嘗試不同姿勢、甚至主動要求「我想再來一張！」，希望鏡頭捕捉下這一刻的自己。

模仿動畫Jojo的角色動作

疼痛之外，我想說…

第三個難關，如何讓走進來的人認識泡泡龍。我們把活動分成三個場域：「生命分享舞台」讓鮮活、真實的故事被聽見；「賀波市集」讓大家透過好咀嚼的飲食認識病友的日常；「勇氣泡泡互動體驗」讓共感化為行動。

園遊會市集取名為「賀波」，就是用台語說一聲「好咀嚼」的意思。當天進駐攤販依泡泡龍的需求重新配方與口感，設計好咀嚼、少刺激的餐飲產品。病友與家屬也化身「一日攤主」，親手準備手作編織、冷萃咖啡、療癒植栽與花生春捲冰淇淋等特色攤位。一分一力之間，自力生活在現場陸續發芽。

原來我可以！

病友很多時候被社會貼上「不能」的標籤 — 不能久站、不能曬太陽、不能自由行動，好像成為社會包袱，需要他人協助才能好好生活，無法為世界貢獻價值。但其實，他們只是還沒被看見。他們能做很多事，懂得照顧他人、能傾聽、能分享面對生命挑戰的勇氣。只是社會有時忘了，這些行動本身的溫柔，就是珍貴的貢獻。

活動集點球中，也藏著類似的概念。透過轉換病友的體感成闖關遊戲，走天堂路、戴變色眼鏡、皮膚彩繪等關卡，體驗病友日常後，蒐集那些別人眼中沒有用處的信物，它們亦只是等待被看見。當它們被重新發現，就能綻放新的價值與樣貌。

再利用廢料作為闖關集點品

活動本次的捐款禮贈品《我們一起，慢慢畫出力量》共創海報誌，邀請四位病友親自為圖稿上色。對他們來說，拿起畫筆並不容易，但每一筆都蘊含着對生命的勇氣，亦是回應給捐款者的心意。圖稿中的花朵象徵陪伴他們的每一份力量 — 家屬、醫護、協會與各位捐款者們。

泡泡龍活動紀錄影片：https://youtu.be/qWrLPaOpano

我們是南無南漫

「南無南漫home」由一行十人的自由工作者組成，希望凝聚一股力量，是敢於放下既有人生道路，跳出來正視內心最想要的，是甚麼樣未來。自我探索的同時，面對不知道要燒老本燒到什麼時候的未知，也會常常質疑自己：「現在我是不是很廢？」

我們藉着一次次的社會行動中，我們更能體會到：其實每個人也一樣，狀態都在變化。也許會有脆弱、受傷、被誤解的時候，但那並不代表失去價值，而是生命正在轉換形狀。

「南無南漫home」團隊合照

我們想傳遞一個信念是：當被看見、被理解、被重新賦予意義，每一份存在都能重新發光，繼續凝聚生命的連結，創造生機。如果你內心也有想實現的理念，卻不知道何處入手，歡迎來臨位於台南北區的基地，打開自我的多元宇宙！

Beyond Pain: Front and Backstage of EB Fair

Hereditary Epidermolysis Bullosa (EB) is a rare genetic skin disorder. Due to defects in the genes that bind epidermis to dermis, parents’ skin is extraordinarily fragile. Even the slightest friction or impact can cause blistering and open wounds. These injuries are not limited to the skin’s surface, it may extend into one’s mouth, esophagus, and gastrointestinal liningturning. Turning eating, walking, and daily wound care into persistent sources of pain.

Pain exists not only in the illness itself, but also in the way the outside world looks at them.​ The affected areas are repeatedly injured, visible symptoms such as limb contractures and smelling wounds emerge, forcing patients to face a great deal of uneasy stares while growing up.​These looks are not always malicious, sometimes they simply come from not being familiar with them, and how to start a conversation.​ Over time, it becomes harder for patients to initiate dialogue, and they gradually withdraw from social life. The less they express, the further away real understanding drifts.

Stairs before stepping on stage

TThis fair is a sharing of courage, trust, and love. The EB Patient Association organized a series of self awareness and verbal training activities. Accompanying patients as they practiced sharing their life stories, learning to recognize the emotions behind their thoughts.

Hosting a rare disease charity event requires immersing oneself in the perspectives of patients, families, donors, and medical experts to grasp each stakeholder’s mindset and fully convey their beliefs to the issue. In less than 1month preparation before taking the stage, tension skyrocketed. Everyday felt like an all-nighter, as the team overcame hurdle after hurdle.

The first hurdle was building trust. When we first joined the weekly online gatherings on Saturdays, there were over a dozen participants, but only we and the executive director had our cameras on. At that moment, we sensed deep in our hearts that for patients, trusting new faces is no easy feat, even turning on the camera comes with hesitation. 

To help everyone understand that we weren’t a traditional PR firm, we decided to step in front of the cameras one by one, introducing each team member and sharing why we wanted to pour our hearts into this event.

Thus, throughout the weekends of September and October, we listened to the patients’ rehearsals while chatting about our recent feelings, gradually weaving a relationship bond drop by drop. In addition to regularly attending gatherings, we also arranged in-person interviews.

After these face-to-face interactions, my thoughts about EB patients began to shift. In the past, media portrayals often paired their appearances with upset music and narratives of pity, depicting them in a relatively vulnerable state. Yet, in real interactions, what emerged in actions and words was simply a group of utterly natural individuals. Each with distinct personalities. They don’t need excessive sympathy. They just want to be treated equally, seen for their brilliance like anyone else, and accepted in their vulnerabilities.

Let’s Be A Star

The second hurdle was physical limitations. Due to pain, most patients rely on wheelchairs for mobility and must avoid prolonged sun exposure. Delivering a speech at an outdoor venue poses a massive challenge for them. Enduring sweat seeping into wounds, while bearing the pressure of baring their souls under the gaze of crowds.

Salon photographing before going on stage

Fearing wound seepage staining clothes or rough fabrics chafing skin, patients typically choose dark colors or soft cotton. But as the stars of the event, they deserved to shine brightly! So, during the rehearsal the day before, we invited a stylist to design personalized looks based on each person’s personality, delivering them to the hotel as a little surprise for tomorrow’s event. One patient lit up at the sight of the vibrant “polkadot outfit” and exclaimed with joy, “I’ll wear this one on stage tomorrow!”

On the event day, patients and families arrived at the preparation room one after another, their faces unable to hide the feeling of nervousness. While the stylist arranged hairstyles, they invited patients to pick accessories for themselves as a final gift before going onstage. “Does this make me look more handsome?” one of the patients asked.

Once dressed and groomed, patients were invited to the photo studio for portrait shots. At first, everyone was shy in front of the camera, but as shutter clicks echoed continuously, they began trying with different poses. “I want one more!”,hoping the lens would capture this moment of themselves.

Imitating the character poses from the anime JoJo’s Bizarre Adventure

Beyond pain, I wanna say……

The third hurdle was how to help visitors get familiar with EB patients. We divided the event into three zones: the “Life-Sharing Stage” to let vivid, authentic stories be heard. “Hebo Bazaar” to introduce patients’ daily lives through easy-to-chew foods; and the “Courage Bubble Experience” to turn empathy into action.

The fair’s market was named “Hebo”—the Taiwanese phrase for “good to chew.” Vendors on the day reformulated recipes and textures to meet EB patients needs, creating easy-to-chew, low-irritation food products. Patients and families personally preparing food and drinks at booths. 

原來我可以！
I can do it!

Patients are often labeled by society with “can’ts”. Can’t stand for long, can’t be in the sun, can’t move freely, as if they become a burden, needing help from others to live well and unable to contribute value to the world. But in reality, they just haven’t been seen yet. They can do many things: care for others, listen attentively, and share the courage to face life’s challenges. Society sometimes forgets that the gentleness of these actions themselves is a precious contribution.

The event’s stamp rally hides a similar concept. By turning patients’ bodily experiences into adventure game checkpoints. Participants experience daily life as a patient and collect tokens deemed useless by others’ eyes. These, too, just await being seen. Once rediscovered, they bloom with new values and forms.

Using recycled waste materials as checkpoint tokens

Our donation thank-you gift, We Together, Draw Out Strength, is a co-created poster zine. Inviting four patients to personally color artworks. For them, picking up a paintbrush isn’t easy, but every stroke embodies courage toward life and serves as a heartfelt response to donors. The flowers in the artwork symbolize the forces accompanying them, the family, medical staff, the association, and all deer donors.

Our Event Clip:https://youtu.be/qWrLPaOpano

We are Namo Collective

Namo Collective consists of ten freelancers, hoping to gather a force. Those daring to set aside their established life paths, step out, and confront what future their hearts truly desire. While exploring themselves, they face the unknown of how long they’ll burn through their savings, often questioning: “Am I totally useless right now?”

Through these repeated social actions, we realize more deeply. Actually, everyone is the same, with states constantly shifting. There may be times of vulnerability, injury, or misunderstanding, but that doesn’t mean losing value. It’s just life transforming its shape.

Namo Collective Group photo

We aim to convey a belief: when seen, understood, and re-endowed with meaning, every existence can shine anew, continuing to forge life’s connections and create vitality. If you harbor an ideal you long to realize but don’t know where to begin, you’re welcome to visit our base in Tainan City’s North District and unlock your own multiverse!