DAMIAN
 

Cause of blindness - Von Hippel–Lindau (VHL)

Damian is a husband and father struggling through VHL, a condition involving a dysfunctional blood vessel protein that induces tumor growth throughout the body.

At an early age, Damian planned on joining the air force. Before he could join the junior Reserved Officer Training Corps (ROTC), a tumor grew on Damian’s optic nerve in his right eye. Over the course of nine months the tumor took his vision and tore his world apart.

The vision loss and VHL have affected his life immensely, but Damian has thrived beyond his condition.

As a kid Damian played tackle football, sometimes even on the street.  He was always active, proud and intense. In high school, Damian started running track and playing rugby.

“But my number one love: martial arts.”

Damian’s attraction to athletics and martial arts reflects his discipline. He wanted to join the air force at an early age. He had recruiters ready to sign him up for the junior ROTC. Damian was going to become a pilot, and then an astronaut.

“I wanted to do something noble. That’s what I was going to do, that’s all I wanted to do.”

But then problems arose with Damian’s vision. A tumor was found growing in Damian’s right eye.

“The diagnosis broke me in half. The only thing I could process was having my dreams crushed.”

Because his mom was busy working and there was no father in the picture, Damian had to go to his appointments alone.

Nine months after his first symptoms manifested, Damian lost all the vision in his eye.

As if that wasn’t enough, Damian felt his doctor had no sympathy for what he was going through. At one appointment his doctor insisted that it was in Damian’s best interest to get a prosthetic eye. It may have been the “proper” medical advice, but it was not in touch with what Damian wanted or needed. So Damian stuck with his gut and kept his eye.

Other doctors still recommend a prosthetic, but Damian declines. He lives without one. His right eye is his badge of honor.

At age 14, Damian was diagnosed with VHL. The tumor that robbed Damian of his vision was actually a byproduct of a larger issue that causes vascular tumors to grow throughout the body.

Not too long after his diagnosis, the doctors found a tumor in Damian’s brain, requiring a craniotomy to remove the tumor.

“Just six months after my first craniotomy, I was back out there playing rugby.”

Damian returned earlier than his doctor advised. For Damian it was about living the life he was going to live despite the VHL. He was going to play when he was ready; no sooner, no later.

Damian found his support from within and never attended an official support group. When we asked him what keeps him going, his response was simple:

“I don’t know how not to do this. It’s all I’ve ever done.”

Now Damian embraces his struggles because they have their own reward.

“The weight gets heavier, but you get better at carrying it. And we’re here to carry a great weight.”

From bussing alone to appointments, to eye and brain tumors, life has always pushed Damian. But he always pushes back.

“We all need some positive reinforcement. For me, if I can gain some sense of accomplishment, it makes it easier to take on the next challenge.”

When people started offering Damian help, he often found it difficult to accept. He was accustomed to independence and because of that, it took some time before Damian was comfortable receiving help.

“I’ve been humiliated. I’ve fallen on my face. I’ve had to expose myself.”

Damian’s reluctance to receive help came from him not yet accepting his own condition.

“You have to accept the part of you that you lost, and all the things that go along with it.”

Damian had to accept having his dreams broken, but not without making new ones.

“There’s no quitting. There’s plenty of ‘I’m tired’s, but no quitting. You do the best you can and you go until you can’t anymore.”

Damian feels that life is like a battle, and his opponent has always been his own struggle.

“I haven’t conquered everything, but I conquer all the time. And I’ve never lost. But I have stopped. And when I stop, that’s when I get in the worst trouble.”

To Damian there was no secret answer to life’s problems, but there is resolution in ourselves to get past them. That resolution is worth everything.

“How you deal with things, how you deal with your problems, that’s just as important as dealing with them period.”

Of course there were some things that could not be resolved. Then, for Damian, it was about holding on to his will to live beyond those pains.

“You have to mourn, and get over your loss. People don’t deal with loss well.”

“It’s like dying, you know, it’s a piece of yourself that dies. You really lose a part of yourself.”

Damian was deliberate. He made it clear that nothing about vision loss—and nothing about life—was easy. But Damian wasn’t complaining. He was proud of the scars on his body and soul.

“Nobody will ever know how hard it is--what kind of hard, or how hard. Nothing I could say in any support group or to any doctor, no matter what I say. It’s all of who I am.”

The VHL still complicates Damian’s life. Aside from the first two tumors, he has stage 1 kidney cancer. A tumor has also grown on Damian’s brainstem. Now Damian takes a muscle relaxant daily in order for him to breathe. And if that was not enough, Damian has had a detached retina, cataracts, and glaucoma.

Damian has been bombarded with complications for the latter half of his childhood and all of his adult life, yet he lists his conditions off casually like items on a grocery list.

“Each is their own battle, there really is no comparison.”

Damian admits that the struggle for each helps manage the others, but the cumulative burden is still enormous.

“Every day I walk around in pain that would put most people in bed.”

And yet Damian carries his pain and his burden with dignity. Despite the pain he bears, most everything seems effortless for Damian. But the battles inside him rage on.

“It’s me vs. me all the time.”

While Damian embraced his struggles wisdom grew where passion once burned.

“Now I don’t fight the same battles I fought when I was younger. I’ve the maturity to know what the issues are, and what’s really important.”

Because of the appearance of Damian’s eye, people occasionally think he’s incapable. Now Damian handles this doubt better than when he was young.

“I’m not as fired up as I was as a kid. That used to really get to me.”

“I can sense what people think of me before the first interaction, before they even say anything. Because people make assumptions of who people are.”

Damian deals with it everyday, but he has learned to get beyond these judgments.

“It’s really all about respect. And when I mean respect I mean it in every sense. Respect a person’s personhood. You don’t know what a stranger has been through. What you see of someone, visually impaired or not, isn’t ever the sum total of who they are.”

Though people judge all the time, Damian can now brush it off. It was unthinkable before, but he laughs about it now.

“There’s just too much happening day to day to be worried about my name being misspelt on a Starbucks cup.”

“We shouldn’t put other people behind the ringer because of things that are going wrong with us.”

Though Damian knows this now, he recognizes that in the past he did not. When he was younger, Damian was due to get a prescription for new glasses, and it was his first encounter with this particular doctor. The doctor looked at his chart and asked what he liked to do. Damian answered that he practiced martial arts.

“I’m a black belt in Taekwondo.” The doctor said. “With one eye and all that contact, I really wouldn’t do that.”

For Damian that was outrageous and disrespectful. Within the first ten minutes of interacting the doctor was already telling Damian how to live his life.

“I’ll say it into the mic. Fuck that. It’s absolutely ridiculous.”

“Sure he might not do it if he were me, but he isn’t me. And he’s got to respect that. He has no idea who I am or what I’ve been through to make it to this point, to keep practicing martial arts.”

But Damian knew his reaction was excessive; he knew the doctor was just doing his job.

“That’s my ego, that’s my own stuff coming out.”

For Damian’s own sake, he stays true to himself. His self-worth felt threatened then, but Damian has grown from that incident.

“You have to let people know you are worth respect. Because your sense of self is everything.”

For Damian his sense of self comes from practicing martial arts. Without martial arts, Damian would not be the person he strives to be.

“What have I learned? Not an easy answer. What I’ve learned is who I am.”

“And I can deal with people’s misconceptions now because I know who I am, and I accept all that comes with that. If you haven’t dealt with that acceptance these things will always hurt you. Every last little thing is going to hurt you if you haven’t reached that level of acceptance.”

Despite everything Damian has been through, he never drowns himself in self-pity.

“I’m proud. I’ve never once asked, ‘why me?’”

“I feel like I’m ahead of the game because I got my problems under water. I do everything I can to get them below the surface, and I use all my strength to keep them there.”

This is Damian’s philosophy: we are tested through our struggles, and that process defines us.

“So the question is, in those moments, what are you going to do about it? What are you going to do about your life condition? That determines how you live. And that question, those moments, those are everything."

Now Damian works as a network engineer.

“With my appearance in the office I’ve had difficulty. It’s not uncommon, people think I’m a charity case.”

“I know I’m behind the eight ball because of that. And around the office the easiest way to straighten that out is to be good at what you do, or at least try hard. If you’re trying they will give you the respect of space.”

Being on his own for so long, Damian grew accustomed to helping himself. But he knows everyone needs help, wherever it comes from.

“Life is cruel, and people can be cruel too. So I guess for the uninitiated, figure out who you are. You can’t identify what kind of help you need if you don’t know who you are. Who you are dictates the help you need.”

“Then it’s about being brave enough to reach out and find out what might or might not work, and that could be very humbling.”

Damian found for himself that work, martial arts and speaking with a counselor is everything he needs.

“I bolster my sense of self-worth in a way that’s real. That’s what I need.”

Damian emphasized that we have to find what fits us. Though Damian is fiercely independent, he knows that loved ones help with the struggle.

“Who doesn’t feel better being around people that they love? Who doesn’t feel better from talking to someone about how good or bad they feel?”

Damian finally feels like he’s beginning to enjoy himself. Now he can appreciate life, despite his struggles.

“You get to the point where the journey isn’t over, but you have a sense of arrival. You take a deep breath and look at all that’s behind you.”

To learn more about Damian's condition, continue here.