I Was The Healthy One

B, Halle, and Neeley on Christmas morning 2011.

Growing up, I was the healthy one.

My siblings were the ones with complex medical issues. They had weekly doctor’s appointments, emergency hospital stays, complicated medication regimens, and limitations on what we could do as a family. There were things we couldn't do, places we couldn't go, and plans that could change at a moment's notice. I understood why.

At least, I thought I did.

When you're a child, you don't necessarily have the words to explain what it feels like to grow up around chronic illness or disability. You just know that this is your normal. You know your sibling needs your parents. You know that sometimes Mom and Dad have to leave. You know that plans change. You learn to adapt.

B and Neeley cheering Halle up while she was in the hospital after an emergency surgery.

And because I was the healthy one, I think I quietly assumed that I was supposed to be okay. I remember one night in particular. I woke up to shouting in our house. My sister was having some kind of allergic reaction to a medication she was taking, and my parents had called an ambulance. Everyone was moving quickly. Everyone was scared. I remember standing in the doorway holding my stuffed animal, crying and watching everything happen around me.

I felt completely helpless. And then, somehow, life continued.

Neeley at school, always with a smile on her face.

My parents stayed at the hospital with my sister, and I went to school the next day.

I remember having to walk into school and pretend everything was normal when nothing felt normal. I missed my parents. I was worried about my sister. I wanted to know what was happening.

But I also remember feeling guilty for feeling that way. Because obviously my sister needed them more.

What right did I have to be upset that my parents weren't there when my sister was in the hospital?

What right did I have to feel lonely?

What right did I have to wonder if I was loved just as much?

These are not questions I remember consciously asking myself as a child. They are questions I have only begun to understand years later. For a long time, I identified with being “the easy one.” It was something my family would joke about. And in some ways, I think I embraced that identity. I was independent. I could take care of myself. I didn't want to add another thing to my parents' already full plates.

Neeley always got excited when Halle made it home from the hospital. She gave her the biggest bear hugs.

But looking back, I realize there was something I misunderstood.

Being the easy one did not mean things were easy.

I think that's one of the hardest things for me to acknowledge.

My parents were doing the best they could. My siblings needed an incredible amount of care and attention, and there is no question that they deserved it. I don't look back at my childhood and blame my parents for the things I felt. Instead, I look back and realize that multiple things can be true at the same time.

I can understand why my parents had to be at the hospital and still miss them.

I can know that my sister needed them and still wish they were home.

I can love my siblings deeply and still feel scared, angry, lonely, or overlooked sometimes.

I can recognize that my experiences were different from theirs without deciding that my experiences didn't matter.

For a long time, I didn't really know how to hold all of those things at once.

It has taken me years to begin to process what growing up in a medically complex family meant for me. In many ways, I am only now, as an adult, beginning to deconstruct some of those experiences.

Little Neeley. Age 3.

And I have had to learn to give a little grace to the little girl I used to be. I am my own biggest critic. I have spent a lot of time looking back at how I reacted to things and wondering if I should have handled them differently. But I was a child. My responses to scary and confusing experiences were not something I could control or fully understand.

Little Neeley didn't have the perspective I have now.

She just knew that she loved her family, that she was scared, and that she didn't want to make things harder for anyone else. She deserved some grace, too.

That realization has changed the way I think about siblings and families of people with chronic illness and disabilities. There is often one person who is identified as the patient. But illness does not exist in a vacuum. It affects the entire family.

The sibling sitting quietly in the waiting room has a story.

The child staying with grandparents while their parents are at the hospital has a story.

The sibling who goes to school the next morning and acts like everything is normal has a story. And sometimes, that sibling may not even realize that their own experience deserves to be talked about.

Neeley is a graduate student at the University of Chapel Hill conducting cancer research as she applies to medical school.

This is one of the biggest things I carry with me as I apply to medical school this year.

My experience has shaped the kind of physician I hope to become. I want to treat the patient in front of me, but I also want to remember the people standing beside them. I want to practice medicine with a whole-family perspective.

That doesn't mean taking attention away from the patient. It means recognizing that the patient's illness affects the people who love them, care for them, and live alongside them. It means being compassionate not only toward the person receiving the diagnosis, but also toward the family trying to understand what that diagnosis means for their lives.

Sometimes that may mean asking a parent how they are doing.

Sometimes it may mean noticing the sibling who hasn't said anything.

Sometimes it may simply mean acknowledging that this is hard.

I think there is tremendous power in being seen.

I also hope to carry this perspective into parenthood someday. I know I will never be able to make every experience perfectly equal for my children. Life simply doesn't work that way. But I hope my own experiences will remind me to look beyond the child who appears to need the most attention and make sure the other children know that their feelings matter, too.

Neeley, B, and Halle on B's Make-A-Wish Trip. Halle ended up leaving the trip early due to a bleeding ulcer that required a hospitalization.

Being the healthy sibling taught me a lot about independence, empathy, and resilience. But I don't think the lesson is that difficult experiences are good because they make us stronger.

Sometimes difficult experiences are just difficult. The strength comes later, in learning how to give ourselves grace, and how to use what we've learned to show up differently for someone else.

For me, that means carrying the little girl who stood in that doorway with her stuffed animal into the future with me. She reminds me that a family can be doing everything it can and still need support. She reminds me that being “the healthy one” doesn't mean you aren't affected. And she reminds me why, someday, when I walk into a patient's room as a physician, I don't want to see only the person whose name is on the chart.

I want to see the family, too.

Here more of Neeley's story of being the "healthy one" as she shares her experiences with Janine's daughters, Shannon and Katie, who were able to relate in more ways then one.

Listen now on Strength Happens Podcast.