How Is She?

My parents still live in my hometown. It’s one of the smaller townships in the North Hills, an area well known to suburban residents in Pittsburgh. Like me some people have left, while others never have or ended up coming back, now raising their own families and sending their kids to the same schools or those in a neighboring district. I know this because of social media, but also since my mom and dad remain in the same house that we moved into when I was four years old.

Every now and then my mom or dad will share that they ran into so-and-so, then providing updates on their life. Sometimes they’ll add, “They asked how you were.” This actually just happened last week. My dad mentioned seeing a girl I knew since our early Catholic elementary school days. He told me about their chat and ended by saying, “She asked how you were doing.”

I paused for a second, then wondered aloud over our phone call, “What did you say?”

He didn’t answer me, possibly because the phone just so happened to cut out or my dog started to bark at the most perfect of times for my question to not only go unheard but also unanswered. I chose not to ask again, maybe because I knew that however he did respond to her question, it wouldn’t have been the honest truth.

Sure, he may have said she’s still living in Chicago and working at a children’s hospital close to her home. Or mentioned how I have an eight-year old daughter, who some say is a mini-me. But that doesn’t say much of how I really am or what I’ve been going through, yet I know it’s the things our parents tend to share during these run-ins: The facts and not the feelings.

As much as I’ve shared with my family and friends over these years, I'm not quite sure my own father really knows the toll that this has taken on me. To be fair, I don’t think anyone really can unless they've been through it for themselves, seeing the things I’ve seen and dealing with the aftermath of it all.

I’ll fully admit that I’ve struggled with the “How are you?” question for a while now myself, yet appreciate the ones who ask. Maybe it’s because there really aren’t any words to properly explain how I feel and what life has been like for me. Or perhaps, there's a part of me that will always feel guilty sharing my own hardships when I know that I'm the healthier one who hasn't struggled or loss as much as he has.

For a while, I never gave any thought or attention to my needs. I had a daughter to raise and a husband who needed help. As I said before, it wasn’t about me. Their health and safety were not only my responsibility but my priority.

But at some point, after he gave up his end of the fight, I had no choice but to see my side in this. It’s something that I've had to not only learn to recognize but come to prioritize. I had to for my own well-being, especially as it continues to have a never-ending impact on my role as Emma’s mother. I had to step up and advocate for myself, especially after learning the hard way that no one else was going to do it for me. I didn’t have the support from a team of diagnosticians, medical providers, therapies, and researchers, something I always thought would eventually come to guide us on this unequipped battle.

Sadly, I didn’t have the local support from family either. No matter how many times I thought my calls for help would be heard, it only left me to see that no one else would ever truly understand my concerns. And those on the other end of the line, they also never asked me how I was or what I needed. Not once, over all these years. Instead, it was dead air, like they hoped I would forget the multitude of symptoms that had been building up since this unexpected beginning, just as they had chosen to do.

For far too long, I was too naive to accept that they really didn’t want to hear the truth anymore. I guess I was a fool to think that anyone actually heard my worries and shared them too, things that were seen with their very eyes in his own childhood home. But I now know you can’t expect a loved one to see what they don’t want, or a doctor to make a rare diagnose that isn’t taught in their outdated textbooks.

It just makes me wish that consideration was given to the others in the story. That their unique perspective were considered, listened to, and valued more closely, because their insight may lead to the answers. After all, they are the ones actually providing the daily care.

If you’ve never thought just once about how the other person is impacted, maybe you should. Instead of thinking she can’t move on from the past or it’s all in her head, maybe it’s because this truth changed nearly every aspect of the way she thought her life was going to be. A woman, a wife and a mother who longingly hoped for answers, treatments, and changes… only to lose that hope over and over again, every day, for now nearly ten years.

Yet, you must stay strong for yourself and your family, despite the pure exhaustion of it all. Because no know else can do it for you.

How would you feel if this was your story?

If it happened to the person you chose to marry?

What if it was your daughter’s story, and she was all alone trying to put a million piece puzzle together that life depended on?