SPACESUIT FOR AN EARTHMAN When Raphi was 14 he received assistance from a surprising source: NASA. “NASA has special space suits for their astronauts that protect them from radiation when they go on space missions. It was a long shot but maybe they could make something for me” (Photos: Ezra Trabelsi Family archives)

This wasn’t an easy interview to conduct:

not because the subject wasn’t forthcoming — in fact, he was personable and articulate; or that he had something to hide — actually, he was extremely open about his condition. The problem was with me and my own discomfort — during the first few minutes, I wasn’t sure what to do with myself as I sat facing a man with a most unusual appearance.

Despite the brutal Bnei Brak heat, my host was wearing several layers of clothing one on top of the other, with tzitzis peeking out from beneath the garments. His hands were covered in special, fully opaque gloves.

At first, his face was hidden, covered with a full head mask that provided total concealment. But after we got settled, the door closed and the windows completely shuttered from letting in any rays of sunlight, Raphi Strauss was finally able to take his mask off and smile.

Raphi’s face looks like a map of the years of suffering he has endured. Its lines tell a story of hundreds of operations, the removal of various growths, the cheekbone that he was forced to give up, and the plastic surgeries and countless painful challenges he’s had to cope with since childhood.

“Don’t worry, a lot of people recoil when they see me,” he says with a gentle smile to put us at ease.

As Raphi began to relate his life story, his battered face no longer mattered. The inner strength, emunah, and personal heroism in overcoming the challenge and suffering overshadowed the disfigurement.

For the last year and a half, Raphi Strauss, 31, has been living in Bnei Brak — closeted indoors during the day and emerging only at night, never venturing outside without The Mask. When he was living in Teaneck, and then in Monsey, his friends and neighbors had gotten used to the scene of the young man with the rare genetic condition, for whom any bit of the sun’s warming rays could be fatal. Today when he ventures out onto Rabi Akiva Street or the Itzkowitz minyan factory, all eyes are on him as he dons the body coverings reminiscent of a beekeeper.

Raphi Strauss’s odyssey began the day he was born in a Haifa hospital. “I was a preemie,” he says, “and somehow the strong fluorescent lights in the incubators ‘cooked’ me,” Raphi says. The doctors quickly removed the beet-red newborn from the lights, but that was just the beginning. Sitting in the sun several months later, baby Raphi looked like he was roasting. By the time he was 11 months old, doctors determined he was suffering from some rare skin condition that was aggravated by sunlight, and that he should always wear a hat outdoors, both summer and winter.

But a few months later, his mother Iris discovered that her son had two small growths on his body. Finally, a specialist at Beilinson Hospital was able to give a name to the rare condition: xeroderma pigmentosum, or XP for short — a rare genetic illness in which the slightest exposure to radiation or to the sun’s UV rays can cause the rapid development of cancerous growths on the skin — growths that can develop in mere hours and which, if not immediately removed, can be lethal.

“This disease is very rare,” Raphi explains. “According to estimates, one in a million people have it. In Israel today there are maybe five people who have it.” But 31 years ago, Raphi was Israel’s only known case of XP, and his physicians recommended that Iris move with her family to a place where there is little sun — perhaps Alaska, or London. In the end, the Strausses relocated to New York with their three little boys (Raphi is the third; eventually Iris had another boy and two girls) and moved in with Raphi’s paternal grandmother.

“I wanted to send him to a Jewish school,” Iris relates, “but the doctors told me that Raphi’s classroom would have to be sun-proof, with the windows covered with special paper. We weren’t religious at the time, but I still preferred a Jewish school for my children, yet none of the schools we approached was willing to take responsibility to keep him a hundred percent sun-proof. Raphi was finally accepted to a public school where a special classroom was prepared for him.

“I didn’t go out to play during recess,” he relates of his childhood memories. “The only time I was allowed to be outside was when I ran to and from school, even with a broad-brimmed hat and sunglasses.”

For a child, Raphi’s existence was a veritable prison sentence. “When all the kids went on a trip, I stayed home. When my parents barbequed in our backyard, I had to sit in the living room. Going outside is so natural for most of the world, that no one really notices what a privilege it is.”

The first time the disease erupted in its most violent and severe form was a few days after Raphi’s bar mitzvah. “All at once, 28 cancerous growths broke out all over my body,” he relates. “Most of them were on my face — my freckles had turned into tumors. Apparently even the most minute exposure to the sun had done damage.

That surgery drastically changed Raphi’s life. “Until then, at least I looked like every other kid,” he says. “But as the surgery neared, I realized that my life was about to change. The doctor told me that I would enter surgery looking like a creation of G-d but I would emerge looking totally different.”

The surgeries were rendered a success, but Raphi’s face became unrecognizably disfigured. “During the first days I had bandages all over my face, but when they took them off, I realized what the doctor was talking about.”

That was just the beginning. In the subsequent years, the growths broke out over and over, and Raphi needed dozens of complex surgeries. Although the cancer was taken out of his face, his appearance changed drastically. “In order to remove the growths they needed to scrape the skin and take out part of the flesh that the cancer had touched,” he explains. “So the disfigurement got worse. In 2007, they had to remove my left cheekbone, because the cancer had damaged it.”

In addition to dealing with his jarring appearance, Raphi knew that he couldn’t have any sun exposure at all, and in effect became a creature of the night. “It came to the point that if I was exposed to daylight, even just going to the porch to get the mail, the next day I already felt a growth or two growing on my face. I didn’t have many choices. I realized that if I wanted to avoid the terrible suffering of the surgeries and the possibility that the cancer would spread to the rest of my body, I could never leave the house during the day.”

When Raphi was 14, he received assistance from a surprising source. “My grandmother knew some people who worked at NASA, and they offered to ask the agency for help,” he relates. “NASA has special space suits for their astronauts that protect them from radiation when they go on space missions. It was a long shot, but maybe they could make something for me.”

Within a few months, Raphi received a special suit produced by NASA’s institutions that was adapted to his size and needs. “It was a sensation at the time,” he recalls. “All the big newspapers came to take pictures of me when I went out to the street the first time with my space suit.” Even with the suit though, life would never be anything like “normal.”

Raphi still has the space suit, but in recent years he’s stopped wearing it, and uses only the mask NASA made for him. “It’s very hard to live in such a suit,” he explains. “It’s hot inside, and also very complicated to get it on every time. So today I rarely wear it, although I put on the mask whenever I go out of the house during daylight. Instead of the space suit, I wear a few layers of special fabric opaque clothes and gloves, and this way I’m totally covered up.”

Even with the mask, which Raphi says makes breathing a chore, going outside during the day is never more than going from the house to the car.

Raphi’s external appearance has generated its own set of challenges. “I remember a few years ago, I went out one morning to my bank, wearing the mask as I waited for the bank to open, and within minutes, policeman arrived with their guns drawn and began to yell at me to get down on the floor and raise my hands. The bank employees who had seen me through the door had called the police to report a man with a strange mask standing outside. The officers came over to me and took off my mask, and then spent quite some time after that apologizing to me.

“It happened a few other times at the supermarket and in other places around our neighborhood. People would call the police to report a strange man walking around with a mask who probably wanted to mug someone.”

Raphi’s family eventually moved to Teaneck, New Jersey, where they became close to the Orthodox community. After graduating nearby Paramus high school, his personal journey into the world of teshuvah began when his older brother became a baal teshuvah and influenced the rest of the family.

“I went to learn Torah part time, and after making some progress and feeling that I was cut out to learn Torah and Gemara for a full day, I went to learn in Ohr Somayach in Monsey. Finally, I felt I had a real purpose in life.”

Once Raphi learned the language of spirituality, did he demand answers from Hashem? Did he question why he was given such serious challenges throughout his young life?

“Look, life is not a restaurant. You don’t go into life and get served a portion as per your order,” he says. “Everyone gets his package when he gets into this world, and he needs to cope with what he has received. My mother, who had a strong sense of emunah even before she was religious, and who was really my pillar through everything, would tell me the story of Iyov and his yissurim. When a worm would eat into his wounds on his hand, he would not swat it away, but rather would say, ‘Eat, because Hashem put you here.’ He accepted his suffering with love. I’m not comparing my life to Iyov’s, chalilah, but even the difficulties I face — and I’m certainly not mitigating them — have been given to me by Hashem and I accept them with love.

“A person needs to ask himself each day what he can do to be better, where he can improve and how he can be a better believing Jew. In that sense, I’m not different to any other Yid. Is there anyone in this world who doesn’t have challenges? No. Everyone has. It’s harder for one person, and easier for another. But Hashem expects us to cope. To be mesakein something. So true, I got a pretty complicated package, with its difficulties and suffering, but I believe fully that I have also been given the strength to deal with the reality that’s been decreed upon me, and I accept it without complaints or questions, chalilah.”

After learning for several years in yeshivah, Raphi began working at various jobs, as long as he could work nights. He managed a cleaning and maintenance company that serviced shuls and office buildings. “I insisted on living as normally as I could, without letting the battle against my disease trap me at home doing nothing.”

He checks himself daily for any skin changes and is biopsied monthly. “I’ve had 300 surgeries and over 60,000 biopsies,” Raphi says. “Each month I wait to hear if there will be another surgery. At one of my surgeries, the surgeon, who I had become close with, was very hesitant to begin the surgery. My condition wasn’t good and he was afraid to operate again. A few hours before the operation, I sat down to write him a letter, explaining to him that everything is from Hashem and if He wanted to take me, He could have already done so at the first surgery. And if I’m still here, then apparently I still have a role to play in this world. I wrote to him that he is only an emissary of Hashem, and he has nothing to be afraid of because nothing is really in his hands.

“Before we went into surgery I gave him the letter. He read it and cried. Then he put it in his pocket and that’s how we went in.”

Over the years, one of the most difficult challenges for Raphi, and especially for Iris, has been dealing with the cost of treatments in America. “Initially our insurance didn’t cover Raphi’s treatments,” Iris relates. “They said it was a preexisting condition, but we’ve seen many miracles over the years. When Raphi needed his most major surgery, the expenses were astronomical. Then I remembered that when we first arrived, I was told by a friend to take Raphi to the Lubavitcher Rebbe. I asked for a brachah, and then the Rebbe did something unusual — he referred me to the Rebbetzin, who was still alive then, and she gave us a small tzedakah box that we should keep at home. When I asked her why I needed a tzedakah box, she said to me, ‘This child has come to collect tzedakah.’

“Years later, when he needed surgery, I remembered this tzedakah box. I took it out and opened a fund, and people began to donate for Raphi. Both Jews and non-Jews donated, and the money all went into the Rebbe’s tzedakah box. This money funded Raphi’s treatments and kept him alive.”

“In general, there was a tremendous kiddush Hashem when we lived in America,” Raphi relates. “Our non-Jewish neighbors saw my challenges and often told me that only a Jew could cling to life like that, to fight and not give up, and to believe with all his might that Hashem does good with everyone. I remember the first time I left the house to go to shul with the NASA spacesuit, all the neighbors lined up on the block and applauded.”

When Raphi was living in Monsey, he established a shul in his own living room. “We purchased a sefer Torah, siddurim, and everything else we needed, and created a vibrant shul. The neighbors would come daven there, and the shul’s name began to spread.” The Friday-night davening was followed by an inspirational talk; a kiddush, sponsored either by Raphi himself or a minyan member, followed the Shabbos-morning davening.

Two years ago, Raphi and his mother followed other family members to Eretz Yisrael. He began treatment at Hadassah Medical Center, but quickly realized that the treatment in Israel would be much more complicated. There was no XP support framework, and those few who had been diagnosed with XP were encouraged to leave the country for less sunny shores. A few months after the move, more growths were discovered, and Raphi needed additional surgery. With heavy hearts, mother and son both decided that in the interest of Raphi’s health, they would go back.

He still had a dream of aliyah, though, and with the help of friends who created a crowdfunding site to help with his many expenses, he set up the XP Society of Israel and made plans to create a safe house and shul, and maybe even open up a yeshivah for special-needs kids who can learn Torah in an unpressured environment.

Last winter, Raphi and his mother returned, and are living in Bnei Brak, even though treatment in Israel is more challenging. Today, Raphi receives ongoing treatment at Ichilov Hospital, which he says is “courteous and caring. They try very much to provide for my needs.”

One advantage of life in Bnei Brak, as anyone who’s been to a wedding there knows, is that the city is still bustling at night, so Raphi doesn’t feel like a lone night owl when he sets out for his mask-less nocturnal excursions.

Raphi hopes he can reestablish his Monsey shul in Bnei Brak. “We have a donor for a sefer Torah and we have all the conditions to establish a shul. I hope people in Bnei Brak will join me in establishing another warm home for HaKadosh Baruch Hu for davening and learning Torah.”

Meanwhile, Raphi has become a sought-after speaker in summer camps for sick children, and in other venues where people are dealing with what sometimes seem like insurmountable challenges.

“Today I know that Hashem gave me a gift, because outside, there’s a real Gehinnom raging. Satan is having a ball dragging people down into the worst worlds, but I don’t have to cope with all the temptations of the street. I’m forced to stay in my shelter, but if I look at it another way, it’s a real blessing.

“One of the things I speak about,” he continues, “is how everyone has a level of emunah, but what we lack is bitachon. If you don’t trust Hashem, you have a problem. And my message to every person is — don’t be skeptical. Believe and trust in Hashem, that He has brought you this far, and surely He has missions for you in this world. So try and figure out what these missions are, and no matter what you’re going through, always find ways in which you can sanctify His Name.”