Making His 'Mark' at Bethesda

Mark Iverson sat in front of a group of women from the Milwaukee Auxiliary this summer and excitedly told them about the Schujahn Memorial Chapel of the Good Shepherd on Bethesda's Watertown Campus as part of the auxiliary's tour of the facility which occurred during the group's annual summer visit.

He told the women about the four angels suspended from the ceiling, the special baptismal font, the ceiling skylight in the shape of a cross, the orange cross suspended from the chapel ceiling, and the various stained glass windows featured in the chapel. Not only was he able to give the ladies a lot of information about the chapel, but he was able to do so with grace, humor and confidence.

Afterward, the ladies of the Milwaukee Auxiliary, very impressed with the information they learned about Bethesda from Mark, all took turns greeting him, chatting with him, and Mark was even able to give out his business card to all those who greeted him.

Mark Iverson isn't your typical Bethesda tour guide. He has lived and received services at Bethesda almost his entire life. But, just like you or me, he has dreams and goals he likes to achieve for himself. And, one of the goals that Mark chose to pursue was becoming a tour guide at Bethesda's Watertown Campus.

Due to the fact that Mark has lived and received services on the Watertown Campus since 1965, and given that his wonderful memory and high level of learning lend well to the tour guide position, it seemed to be a perfect fit.

The idea itself was spearheaded by Mark himself, and helped along by Dot Simon, Bethesda's public relations clerk and tour guide, and Mark Hagen, Bethesda's director of public relations and legislative affairs. Simon, who has worked at Bethesda for seven years, has developed many friendships with people who live at Bethesda's Watertown Campus, one of them being Mark.

Over the years, as more and more conversations with Mark continued, a friendship blossomed, and Simon soon realized that Mark had a knowledge of Bethesda that no one else possessed.

"Mark is very outgoing, and he is very eager to talk about Bethesda and wants to show off where he lives," states Simon. "He has lived here for almost 40 years, who better to represent Bethesda and the type of services the organization provides than Mark?"

During this time, Mark also began a friendship with Hagen, visiting him as often as possible and collecting magazines and books from his office.

"One day Mark just stopped by and said hello, and over the years he developed a friendship with not only myself but the entire public relations staff," states Hagen. "We all look forward to his visits and enjoy talking to him whenever he has a chance to stop by."

It was because of that relationship with Hagen, Simon and the public relations staff that Mark began taking an interest in their job. Before long, he was asking if he could help them with their work - specifically the tour guide duties.

"With Mark's vast knowledge of Bethesda along with his high level of learning and memory, we thought he'd be a perfect addition," states Hagen. "Mark's achievements are what Bethesda's services are all about. What better person to represent Bethesda than him?"

So, the plans started in motion, and the next time Mark visited the public relations department, Hagen handed Mark a box that contained his very own business cards with his name and title - Bethesda Tour Guide - on them, with a name tag to match.

Needless to say, Mark was excited about the endeavor, and was up for the task, but he was also a little hesitant, due mainly to his disability and what it has done to him.

At age four, shortly before he was admitted to Bethesda, Mark was diagnosed with Lesch-Nyhan syndrome. Lesch-Nyhan syndrome is a rare genetic disorder that affects males. Males with this syndrome develop physical disabilities, mental retardation, and kidney problems. It is caused by a total absence of an enzyme. Self-injury is a classic feature of this genetic disease.

Males with Lesch-Nyhan syndrome develop neurological problems during infancy. Infants with Lesch-Nyhan syndrome have weak muscle tone and are unable to develop normally. Affected males develop uncontrollable writhing movements and muscle stiffness over time. The most dramatic symptom of Lesch-Nyhan syndrome is the compulsive self-injury seen in 85 percent of affected males. This self-injury involves the biting of their own lips, tongue, and fingertips, as well as head banging. This behavior leads to serious injury and scarring.

Since childhood, Mark has shown the affects of Lesch-Nyhan syndrome, and does show scars from when he has been driven to hurt himself. As a result, Mark sometimes is filled with self-doubt and periods in which he does not like himself.

But, despite his hesitancies and self-doubts, Mark doesn't let his disability get the best of him. And, he can thank himself and his own personality, as well as the staff at Bethesda, for this transformation.

"Most of the time Mark has a fun-loving, outgoing personality. But, just like all of us, he has periods of low self esteem. Basically the staff at Bethesda tries to offer unconditional love and acceptance to him, and we strive to provide him with a variety of life experiences," says Doug Schefft, Bethesda psychologist. "That, more than anything will help Mark become more self confident and less critical of himself, which goes a long way in helping to combat the debilitating affects of the syndrome.

"That is why being able to help the Bethesda organization as a tour guide is so important to him. It gives Mark the ability to discover some of his own inner strength and be proud that he can do this for himself."

Before Mark could help with tour guide duties, there was a lot of work that needed to be done - he had to learn Bethesda inside and out. So, every week, Mark and Schefft would meet with Simon and go over all the important aspects of Bethesda that tour guides provide guests when they visit the Watertown Campus. Simon would take Mark to different stops on a typical tour each week, teach him pertinent information about those areas, and review the information they learned during previous weeks.

"Each week we would highlight one area of the tour, and it was Mark's choice to pick the area we'd go over each week," reports Simon. "Over the course of six months, we had gone over all the areas of the tour at least three times. His ability to learn all about Bethesda was fantastic. Sometimes he'd joke around with me and say that he didn't know the answers, but make no mistake, Mark was very well prepared and knew all the answers."

After a few months of working together, the time came for Mark to show off his newfound skills to a tour group that was visiting Bethesda. Together, Mark and Simon would show the tour group around the facility, and Simon would have Mark answer questions about Bethesda in various places throughout the tour.

"At first, he was very worried that he wouldn't be able to go through with it - feeling that he was going to let everyone down," says Schefft. "But, Dot was so easy going with him and was there to help him through it and keep him on the right path throughout the tour. She was able to communicate her unconditional faith in him.

"Dot and Mark are a perfect fit. If he gets distracted by something or has trouble getting across what he wants to say, Dot is there to help him along, encourage him and get him to the place he needs to be to perform this new job of his. They make a great team!"

Mark echoes those comments and from spending time with them during their regular weekly meeting, you can see that Mark and Simon work well together, feed off each other's personality, and create an interesting and informative tour for people visiting Bethesda's Watertown Campus.

Simon marvels at how quickly Mark was able to achieve his goal.

"Whenever we do a tour together, he's just fantastic," says Simon. "You can see the pride when he tells people about Bethesda. He has worked really hard to achieve this goal and he deserves all the credit. I'm proud of him and his accomplishment, and can see that his achievement has brought him more self esteem, independence and confidence."

Mark, however, is quick to credit God and give Him glory for his ability to achieve this goal.

Schefft, who has worked with Mark since 1989, is understandably proud of Mark's desire to become a tour guide and his effort in doing so.

"I'm proud that he can do this for himself and prove to himself that he can accomplish anything that he puts his mind to," says Schefft. "This will enable him to discover his own inner strength and develop self confidence that can be used in other areas of his life."

Schefft reports that Mark also wanted to accomplish the goal of becoming a tour guide in part because he wants to be a good helper for the organization. Schefft states that Mark has always loved helping people and enjoys being a big brother figure to the people who live at the Watertown Campus. Now, he is excited at the prospect of helping the organization in the same way, in appreciation for what Bethesda has done for him.

"Mark is really a pioneer in helping deliver Bethesda's message to the people who support the organization," Schefft says. "It has been Bethesda's mission to not only support people with developmental disabilities, but also educate the community about disability awareness. To have someone who receives services from Bethesda become the one telling people about Bethesda's services is truly amazing."

It has been Bethesda's effort to educate society about developmental disabilities and try to eliminate the prejudice or fear of the unknown that has created unnecessary boundaries between people with developmental disabilities and the general public. Schefft hopes that Mark's efforts will help bridge the boundary between the two.

"It is Mark's wish to leave a legacy," reports Schefft. "It's been my experience that everyone who meets Mark is touched by his genuineness and his perseverance. He is a real role model. Despite all of his challenges, he remains well adjusted and I believe people are richer for knowing him.

"With Mark helping to give tours at Bethesda, it will certainly leave a gift to the people who are part of the tour, and they in turn will tell others about how they learned so much from a person who receives services and supports from Bethesda. As a result, more people will learn to understand and accept people with developmental disabilities as individuals who have a lot to offer and are not so different than any one of us."