Nathan Herman

This is the second story in a two-part series about the unique relationship shared between a young man and his young caregiver (go to part one).

NOTE:  Nathan/Dylan slideshow at bottom.

Meaningful work

Nathan has never walked and cannot use his arms. He must be bathed, fed, and lifted from couch to chair to bed. In his own words, the overall physical effect of his disease is that “movement basically dies off.” When asked to describe his body to someone who can’t meet him or see him, Nathan says, “I would say it’s a brain and a jaw. The rest is just useless, there to support my brain.”

But he says that growing up in a small town and going to public school where you knew everybody made him feel less different. He doesn’t identify with others who share his disabilities and doesn’t feel terribly sorry for himself.

“I was born this way and it’s just this subtle thing I’ve dealt with my whole life. It’s hard, but I guess there’s a lot worse things to be afflicted with,” he says. “At least I can still speak and communicate with the world.”

Just as Nathan doesn’t like to be identified as disabled or as an inspiration to others for living beyond his doctors’ predictions, his caregiver doesn’t like to be told that he’s making a huge difference in the world with his job.

“Here’s work and here’s charity,” Dylan says, holding out his hands to demonstrate a spectrum. “And here’s where I am” – he indicates somewhere in the middle. “ I feel like [“making a difference”] is the wrong reason to do it. It shifts the focus away from what you have to do.”

But it’s more meaningful than fetching the ladder to retrieve toys on high shelves at Toys R Us, says Dylan. He likes the caregiver role, saying it comes to him naturally and doesn’t even feel like work.

A personal touch

After being thoughtlessly hoisted into the air by other caregivers, Nathan feels his new employee (and friend) possesses real compassion. For Dylan, it’s about “putting his brain in Nathan’s jar,” getting inside his mind and really listening to and then intuiting his needs.

“There needs to be some empathy involved,” says Nathan. “Some people just jerk me around. Not out of meanness.” If you can’t do some “mental guesswork” about how that might feel, you shouldn’t be assisting people with disabilities, he says.

“And it can’t be sympathy,” says Dylan. “It can’t be, “Poor baby.’”

“Yeah, I don’t want that,” Nathan says emphatically.

“I think the most important thing to do is just listen,” says Dylan. “He tells me what he needs and I just do it. To be able to listen is the most important, and things just fall into place after that. He knows what he needs. He knows what he wants.”

Nathan hired Dylan through a consumer-directed program. This is what gives Nathan the ability to direct his own care and ensures that Dylan responds to his wishes. Dylan’s complete lack of experience was in many ways a plus for Nathan, because he was willing to listen and learn and do it Nathan’s way.

Nathan says his needs are personal and specific to him. For example, he doesn’t need to be turned for bedsores. Back when his wife cared for him, at one point she started sponge bathing him instead of giving him a full bath, and he realized for the first time just how terrified he had been for all those years he had been lifted into a bathtub. He has instructed Dylan to do the same.

Dylan holding Nathan

In talking about this, Nathan adds that some training in how to be a good employer would be helpful to him. “It’s sometimes hard to balance being an employer, a friend, and being totally dependent on Dylan. Some information or training on how to train and supervise a caregiver could be really helpful.”

Because of his attentiveness, Dylan is perfectly suited to his role as Nathan’s daily caregiver and companion. Now, the two men don’t even need to communicate verbally when Dylan needs to slightly adjust Nathan’s hand an inch so he can resume working on the computer.

Client and confidant

When Nathan met his wife online, he weighed a stunning 30 pounds and had been told most of his life that he should be prepared to die. Nathan has since gained about 40 pounds and has become very interested in the world around him.

As their relationship has grown, Dylan has watched Nathan put on weight. He says he doesn’t want to imagine him at his worst when he was wasting away to the weight of small child.

“I’ve seen pictures,” he says. “I’ve seen some bad stuff. I can imagine it, but I don’t want to. It’s not a pleasant thought. But…it would make it a lot easier for me to move you,” he jokes.

Nathan recently was told he might have to undergo surgery for an intestinal problem – something that could leave him on a respirator and render him without speech.

“That’s basically all I have left and once I give that up…” he trails off.

Working with someone on a daily basis who is “medically fragile” comes with its harsh realities.

“It’s a ‘hope for the best, prepare for the worst’ situation,” says Dylan.

For Dylan the subject of his friend’s possible loss of speech is uncomfortable. This may be because he knows how important communication is to Nathan, like the times he needs someone other than a family member “to vent to” and to “complain about my weekend or talk to about a medical condition.”

Concerned about the future, Dylan has done some online research for his client and discovered others with even more severe cases of the disease that have lived to be nearly 50.

“I wasn’t prepared to get old,” says Nathan. “Now I think, what will I do with my life? I would have taken college more seriously.”

Now, with his new personal ally at his side, Nathan asks himself: what’s next?

– Story by Dinah Cardin