Zayd is a funny, smart, and talented 23-year-old. He practices tai chi and plays the trombone. He is also an amazing public speaker and an even better friend, brother, and son. Zayd, who lives with Hunter syndrome, is also currently pursuing a PhD. Even though he’s young, he’s learned a lot of lessons—many of them outside the classroom.
In elementary school I didn’t have many issues with people pointing out my condition, because I wasn’t looking that different. But in middle school, the differences became more apparent.
“I remember the first day there; I was all alone. I didn’t have any real friends that transferred with me from elementary school. The first thing I was greeted with was somebody making a snide remark about my condition. That didn’t happen in elementary school, and I was definitely unprepared for it.
“Looking back, I wish I was more aware of my condition going in. It is very disillusioning when you find out the hard way that there is something different about you, but I got through it. I found ways to cope.”
Finding a band of friends
One of the coping strategies that worked for Zayd was to focus on an activity instead of his condition.
“I got good at the trombone, and people were starting to know me for that instead of my condition. That’s how I started coping with it from middle school into high school.”
In addition to the physical obstacles he faced, there was a big emotional one.
“The challenge was being able to see myself as somebody who could succeed. We had a musical director who was very good at making what we did seem competitive and something worth striving for. At one point I finally said, ‘Wait a second. I can get good at this.’ My mindset changed. Having that fuel of competition made a big, big difference for me, even though I wasn’t very athletic or whatever.”
This focus gave him both a sense of purpose and an opportunity to be known for something beyond his condition.
In jazz, you have improvised solos where a musician will just go and riff. One time, we competed in a jazz festival, and I actually won an award for being an outstanding soloist! That was huge for me.
“I wasn’t used to getting awards. I’d seen all these friends win athletic awards and things like that, but I never had. So being able to go to this place with these judges and be recognized for who I had become by dedicating so much was extremely powerful.”
But most of all, Zayd was forming friendships with the people in the band—especially in the trombone section.
“They were some of the best friendships that I had. The beautiful thing about these friendships is they would never make any kind of comments about my condition. They always treated me like just a very cool person.
“I was surprised by how deep the friendships could get. One boy I remember was also going through some hard times. He had been in a car accident at an early age. Because he knew there was something different about me, I think he felt more comfortable being himself around me. We were all bonding over this shared instrument that was a very, very powerful recipe for good friendship, and we stayed very close friends throughout middle school.
“I imagine it’s similar to other kinds of organized activities, whether it is sports or clubs or whatever. There’s something about going over a hurdle with others that brings you together. And I hadn’t felt this sense of community until I discovered band.”
For Zayd, having real relationships is very important. He values the connections he can have with others, and he seeks them out in his day-to-day life. But Hunter syndrome has created barriers for Zayd to overcome.
Zayd had a mentor who once told him, kindly but clearly, “Some people are going to feel uncomfortable around you because you’re different.” While that’s true, he doesn’t want to focus on it. To build bridges with those around him, Zayd puts people at ease so they can open up to him.
As I got older, I started learning about using humor to defuse discomfort. I talked to somebody who worked in the comedy business, and they said that even if it’s a bad joke, you’re addressing what’s already in somebody’s head a lot of the time. Somebody will be thinking something, but they’re afraid of how you’re going to respond if they say it. So I just go ahead and make a comment about it first.
“So these days, I just go and point out some weird thing that’s slightly funny about my appearance, and that usually defuses the tension. Like when I’m giving a speech and there’s a really high podium I’ll say, ‘You know, I never use these things because nobody would ever see me if I did.’ Something stupid like that is enough. If you can take yourself less seriously, it’ll help them feel less uncomfortable.”
Zayd knows it may not be his responsibility to make other people comfortable. But for him, it’s a fast and easy way to connect with people.
5 strategies Zayd uses to help others understand his condition
Have a simple explanation ready to go that explains your condition and symptoms.
Invite people you trust and care about to ask questions. You can anticipate the likely first question on many people’s minds and explain that Hunter syndrome is not contagious.
You’ve been living with this, but they haven’t. They may not understand what you’re going through yet. Try to give them time to catch on and catch up.
Being candid with people you trust about your condition and your experiences helps them find common ground with you. They will have had their own challenges, which can help them understand yours.
Be a voice
There are many ways you can advocate for others with Hunter syndrome:
- Join a patient advocacy group
- Help raise awareness
- Speak up via social media, town halls, and school meetings
- Encourage others to participate in awareness or fundraising events (eg, 5K runs and walks)
Tagged in: Vulnerability, Self-discovery, Community & relationships, Problem solving