But That Ye May Have Patience: The True Story of a Marfan Syndrome “Victim”

But That Ye May Have Patience: The True Story of a Marfan Syndrome “Victim”

But that ye have patience, and bear with those afflictions, with a firm hope that ye shall one day rest from all your afflictions.

Alma 34:41, Book of Mormon (Joe’s favorite scripture)

The first time I saw Joe, he was standing at the pulpit at the Church of Jesus Christ of Latter-day Saints building in Saratoga Springs, Utah, sharing his experiences and testimony, or witness, of Christ. He talked of strength and courage. Revealing his bone-thin arm, he said something like, “Brothers and sisters, you may think you are weak—look at me, I’m the weakest among you. But with Christ I am strong. You are stronger than you think. You can do more than you think. I used to be very bitter at my situation, but I had to learn that with Christ, I can do all things. Even though physically I’m weak, God can still use me to accomplish great things.”

At age twenty-two, Joseph “Joe” Balanzategui occasionally struggles with depression and light post-traumatic stress, created by countless surgeries he’s endured, including four heart surgeries. He’s a compassionate friend and a good storyteller. His rapping talents are legendary among his friends, and he can often be caught singing along with the soundtrack to Hamilton in the church halls.

Joe was also born with a severe case of Marfan syndrome (MFS).

Marfan syndrome, a connective tissue disorder that mainly affects the muscles of the heart, usually manifests itself through long fingers, height, disproportionate limbs, and heart defects. When Joe was about six months old, the doctors told his parents to not expect him to live to age two. From his mom’s perspective, the doctors almost treated Joe as if he was already dead. When he lived to be two, the doctors said don’t expect him to reach four. His mom, however, never believed the doctors. Joe said, “Call it what you want, faith, stubbornness—mix of both maybe. She never believed the doctors for a second. She was always very sure that I would make it.”

When he reached four, the doctors decided not to put a death date on him.

Joe’s life has consisted of a physically weak body. Because of the connective tissue disorder, he’s unable to grow much muscle, and as a result, he learned to walk later than the average child. His body is mostly a skeleton, and the recent heart surgeries have left him with a protruding chest. “As a kid,” he said, “everything is one hundred times more traumatic, and I don’t remember a lot of what I went through,” meaning he’s blocked the memories of most of the surgeries he endured. The heart surgeries are easier to recall because they occurred at the tail end of what he calls “the surgery years.” After the surgery years, came the depression and PTSD years, and as an adult, he realized that spending as much time at the hospital as he did socially inhibited him. An awkward teenager, Joe had to learn how to pick up on social cues. He wanted to go on dates—just not pity dates. Unable to do many things other twenty-two-year-olds can, especially sports, Joe is persistently grateful for the friends who recognize his limitations and plan activities accordingly. Joe is social and loves being around people, if only to stay on the sidelines.

Describing his everyday life for me, Joe said,

Yes, there are things I cannot do. There are things I won’t ever be able to do in this life, and there are a lot of unfair things in this life. . . . There are things I can do, and I shouldn’t count those out. . . . What matters is what I do with what I can do. I simply have to learn to be more resourceful with what I do have than maybe your average person. Is it unfair? Maybe. But there’s no point in just laying around and thinking about how unfair it is. I just got to work with what I have. Yeah, it’s frustrating. It’s constantly frustrating. My younger sisters are stronger than I am. My peers grew up, and I still feel like I’m ten years old, just physically . . .  Everyone grew muscles and I never did. . . . It’s very easy to remember just how disadvantaged I am. Physically speaking. I could find examples of how disadvantaged I am every day, but there’s no point in that. It just cripples me. If I’m going to be crippled physically, I might as well not cripple myself mentally.

When I asked how he managed to gain this perspective, he explained that he refused to be a victim. Growing up, he often thought of the hospital as “a divorced parent [he] was forced to spend time with every other weekend or so.” He added, “And, you know, it was a divorced parent, I did not enjoy visiting.” The worst part of the surgeries, at least the heart surgeries, were the chest tubes that dug under the skin on his chest and sat there, little alien pieces of plastic constantly reminding him of their presence. After the surgeries, he developed light PTSD, which caused his mind to “go cold . . . like a feeling of unsettling ramped up to ten . . . and suddenly [he felt] under attack.” But as he explained, “Until I am gone, I’m going to do everything in my power to get all the things I really really want. One is a girl. [One is to be a writer, another a movie maker.] I want things, and I know that there’s absolutely no chance I’m going to get those things if I have no confidence, if I don’t even try.”

The last time I visited Joe, he talked about family life, his depression and PTSD, his hobbies and hopes, his goofy and awkward growing up years, and his love of God. Of all the things that make Joe, his love and dependency on a higher being stuck me the most. Joe is a “victim” of Marfan syndrome, a movie maker, a middle child, a Californian native and Utah resident, a child of Ecuadorian immigrants, a book writer, a Latter-day Saint, and a friend. To me, he’s a constant reminder of how weak things are made strong and how circumstance can make a person only as far as he lets it. He’s an embodiment of a “firm hope that [we] shall one day rest from [all our] afflictions” (Alma 34:41).

 

Ranae Rudd is a graduate student at Brigham Young University, a part-time ESL teacher, and a full-time little sister and favorite aunt. Along with copy editing, Ranae enjoys writing short stories.

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