Comfortable in His Skin, by Stephanie Gray

     It was an encounter science predicted would never happen.   As I sat sipping coffee, my interviewee, a 30-year-old teacher, enjoyed a Root Beer, masking the reality that he normally consumed nutrition by a feeding tube.  But I guess Root Beer isn’t really nutritious.  I suppose if you’re going to ingest it, you may as well let it serve its only purpose—to treat the taste buds.

     Moe Tapp was “supposed” to be dead 28 years ago.  But sometimes people defy the odds.  I learned about his condition two years before learning about him.  Epidermolysis Bullosa (EB) is something I tell my audiences about when I speak on assisted suicide and suffering.  I tell the story of Jonathan Pitre, a 16-year old who lives with this excruciatingly painful condition, and talk about how killing people ought not be the solution when we need to kill pain.

     And then, one day recently, a person with EB showed up in my audience: Moe was grateful someone was telling others about “the worst disease you’ve never heard of,” as an EB research association describes it.

     When we subsequently met at an A&W in downtown Vancouver for him to tell me his story, I reacted the way most do when they encounter someone whose skin is as fragile as a butterfly’s wings, whose painful blisters cover a majority of his bandaged body: “Is it okay to hug you?” I cautiously asked.

     “Yes,” he said.  “Don’t worry.  If it would hurt me, trust me, I wouldn’t let you.”  He does, though, have a fear of falling and typically needs assistance walking down stairs to ensure he doesn’t fall—because he has, and there aren’t words to describe the searing pain of blistered skin slamming against hard floor.

     It has been said that “Two people can look at the exact same thing and see something totally different,” which demonstrates that “Perspective is everything.” That is certainly true when considering Moe’s story.

     One could focus on Moe’s bedtime routine: How he connects his feeding tube so liquid nutrients can be slowly dripped into him while he sleeps. 

     But better would be to focus on what Moe wakes up for: his employment at a high school where he works with students from grades 8-12 who have learning issues of all kinds, whether ADHD, dyslexia, autism, etc.  His own experience of suffering, and rising above it, gives him profound compassion.  He is fulfilled in being needed by his students, who are fulfilled by him connecting with them, by his belief in them and their ability to achieve.

     Moe could be frustrated by the stares and questions he gets about why he looks different, and whether or not he was burned in a fire or car crash.

     But instead he seizes the inquiries as opportunities to raise awareness about EB.  As Moe said, “We won’t find a cure if people don’t care, and people won’t care if people don’t know.”  Moe confidently initiates discussion of his condition every year with a new crop of students.  He encourages their inquisitiveness.  In doing so, he not only teaches them about his condition, he teaches them how to be accepting of one’s difference.

     One could focus on the brief period of anger Moe went through in his mid-twenties.  Blisters in his throat caused such severe pain he couldn’t eat at all by mouth.  He realized then that he would never be able to be spontaneous and just go travelling without doing weeks of research to make sure all he needed could be addressed in a new environment.

     But better would be to focus on the camp he went to in Minnesota where anyone in the world who has a skin disease gathered.  He first went as an attendee and then returned as a volunteer.  Knowing he was part of a broader community of people whose shared experience enabled them to readily empathize with each other gave him encouragement.  Attendees cheered each other on with this philosophy: “If you can do this, if you can overcome, so can I.” 

     One could spend time dwelling on the burden and pain of baths and dressing changes every 2-3 days that cost $1,000/month—and the infections and exhaustion that come along with living with EB.

     But better would be to reflect on how his Catholic faith has sustained him (and become more personal and real for him in adulthood), and how his family and friends have rallied around him and stood by his side.  Moe is a gamer.  He also loves watching wrestling (and dreams of being a commentator for pro-wrestling).  Old school Rock and Roll is his music genre of choice and reading is also on his list of enjoyable activities.

     Moe has never thought of suicide.  But on that topic, and its close relative euthanasia, he said he does understand why people would consider them due to pain—not that he supports them; in fact, he views both as wrong and would instead focus on pain relief and comfort.  He noted that he got swayed against euthanasia when he heard a compelling pro-life presentation; moreover, he realized that to say someone like him should be allowed assisted suicide, but others should not, is to make the judgment that his life is somehow less valuable than someone who is 100% capable.  He said if someone wanted to end their life he would ask why, then see what their life was like at home, at school, etc., and then work to make that person’s life better. 

     “There’s hope, always hope,” he declared.  “I know it sounds corny, but it’s true.  People will always be around you that care.”

     Of course, if such people are lacking, it would be better to introduce supportive people rather than eliminate a suffering person.  Moe himself has reached out to families whose babies are diagnosed with EB.  They first connect over the condition, but remain friends because of a familial bond that forms.

     At the beginning of the interview I asked Moe how he would describe himself.  “Good natured,” he said.   “[A] good dude, pretty chill.”  That definitely captures my observation of him; and when I think of that, plus the full and satisfying life he leads, even with—and perhaps because of—such a debilitating condition, I think about how, in a paradoxical way, Moe Tapp is comfortable in his skin.

Watch Moe's story here:

Watch a commercial about EB: