When Someone With My Disorder Passes Away

Inspired by When a Child With Your Child’s Disorder Passes Away

Someone died this month. Someone who had the same rare disease as me. He was 19. I didn’t know him, though I followed his story on social media.

Two months ago, someone else died. She also had the same rare disease as me, and I knew her personally. She was 30.

Three months ago, a mother held my four-week-old daughter in her arms. This mother’s own daughter passed away two years ago, also at the age of 30. She had my rare disease as well.

A year and a half ago, a young mother passed away and left her child behind. She also had the rare disorder that I have. She was 28.

When I was in college, I remember collapsing on my friend’s bed in a puddle of tears. He asked me what was wrong. I told him one of my childhood friends had passed away. She was 25. And of course, by now, you know the story — she had cystinosis, too.

Are these merely nameless statistics, as my writing might suggest? When others post their tributes on social media and I remain silent, am I showing how heartless I really am?


I remember as a child attending family conferences every other year in San Diego. One year I played tennis with a boy a couple years older than me. Two years later, he wasn’t there. He was 13 at the time of his passing.

I have a cystinosis family directory, dated 1985 — two years after my diagnosis. Sometime in the late 1990s, my mom went through and wrote “deceased” on each entry for which she could confirm that information. I even helped her. Oh, you forgot so-and-so, I would say matter-of-factly. Remember, he died last summer?


Have I become numb? Expectant, even, that early death is just part of this life I live?


It still hurts. Every single time.

First, the pain.

Whether or not I know the person who has died, it is tragic. I think of the family. I wonder what the person wanted to be, what he or she had already accomplished; I think about the times I shared with the person if I knew him or her. I think about how much was overcome. I think of all that was overtaken by cystinosis, even so.

Next, the selfish hunger.

I’m human. I want to know how the person died. I crave information. “She died of cystinosis” isn’t specific enough. I won’t go into the ugly details here, but yes, I do compare myself and my situation to try and tell myself that I’m not in the same danger. I’m not proud of it. It’s painful to even write that I do that.

But it’s something we all do: Your parents each die of cancer, and you mourn. You never stop mourning. But later, when you have the emotional time and space to add something else, you realize your own risk and schedule that mammogram or colonoscopy.

Third, the guilt.

Obviously, if survivor’s guilt was uncommon, there wouldn’t be a term for it. I’ve seen people who are more compliant and on top of their care than I am die at a younger age. I feel guilty that they left before I did. (But we humans rarely get what we deserve, and life isn’t fair.)

I also often feel guilt that I didn’t get to know the person. No, we’re not all best friends. But because it feels like we’re family, I do experience regret at not reaching out.

Always, the worry.

I wonder who’s next. I wonder if the same thing will happen to me.

And now, I worry about my daughter. Will she know her mother? Will she say a tearful see you later to me when I drop her off at her first day of kindergarten, or will she say a tearful goodbye earlier than that and know me only through photos and her father’s stories?

Often, the walls.

Despite feeling guilty about not getting to know the person, I put up walls. I’ve been doing this ever since that boy I played tennis with in the 1980s went absent at the next conference. I fear getting close to others within the cystinosis community. I fear having to say goodbye.

Later, the anger.

Because the cystinosis community is like family, when someone passes, we all feel the pain. The tributes go up on Facebook. I find myself prone to anger and resentment — you never acknowledged this person during life, and you never shared her accomplishments while she was living, but you’ll use her death to garner sympathy?

And yet.

And yet. That’s not what’s happening at all. People are merely sharing the pain. The sadness for the person’s family. The shock that this person was taken at an age when most are in their prime. The fear for their own children’s lives. The fear for their lives. The grief.

It’s true that we should ALL appreciate people more while they’re living. But on the list of ALL, folks, my name appears first.

Finally, the mingling of hope and sadness.

The pain comes back around. And I just feel sad. For our community’s loss. For a glimpse of (perhaps) my destiny.

But this time, there’s also hope. When we all come together as a community and mourn a loss, we also share love. We unite and pray and work even harder for better treatments and a cure. We want this person’s death not to be in vain. We are inspired to donate to research. Our friends are inspired to donate to research. We hug our babies more tightly, whatever age those “babies” may be. We are inspired to live. We are inspired to never forget.

Through it all, the family bond.

Having this family, having any family is tough. But it’s so important that we have each other and don’t have to go it alone. We won’t get along with everyone, and some of us have very little in common. But we do have this is common: our victories and our losses are shared.