#rarediseasejournalingchallenge Day 13

We are social beings, designed to connect. We all bring complex issues to the table in our relationships, and a lifelong condition can be a big complicating factor. It is this factor that inspires today's prompt.

There are so many types of relationships to be touched on here. There are friendships, romantic partnerships, sibling relationships, patient/doctor trust, and more.

When I was a child, it was my desire that none of my peers at school know of my rare condition; my parents honored this request (for which I owe them a deep debt of gratitude). I do believe this was best for me in elementary and middle school and also jived well with the place I personally gave cystinosis in my mind (i.e., not a prominent one).

In the summer between my sophomore and junior year of high school, it became evident that my kidneys were failing rapidly and dialysis was imminent. Still, none of my friends knew of my situation. This helped me to feel more like myself (a person who wanted neither sympathy nor excuses) and gain confidence in areas independent of my declining health. It was satisfying to achieve without the weight of being told how remarkable it was for me to do so “despite being sick.” I was a normal straight-A student… in spite of nothing.

But it’s undeniable that my last two years of high school were isolating. Dialysis became a huge part of my life, though I always used my love of academics to ground me (no matter how huge dialysis became, I managed to make calculus more so—it sounds ridiculous now, doesn’t it?). But here was this major thing that I wasn’t talking about, and that took a toll. It was almost like I was living a double life, though at the time it felt entirely natural to me and wasn’t entirely disingenuous. Three times a week, for 3-4 hours each session, I was at the hospital for dialysis. I remember feeling sick after dialysis, sleeping 12+ hours per night, and being worn out on weekends, but I always felt great at school by very nature of being at school, focused on my love for learning and achieving.

But hindsight is 20/20, and I realize that while my academic achievements multiplied in the face of health challenges, my social connections severed, shattered, untied… in sum, at school I had none. I had casual friendships, people to sit with at lunch and partner with during group work if the teacher told us to find a partner. But the thing that took up most of my time outside of school was taboo, and I withdrew into my head and my textbooks without even realizing that I missed the deep, close friendships I had had when I was younger.

On the flip side, church was a pretty safe place because no one in my youth group attended my particular public high school. I don’t remember a time when people at church didn’t know about cystinosis or a time when I hesitated to tell them. In stark contrast to my high school life, I just didn’t care. So while it rarely came up, it wasn’t something that I went out of my way to hide.

So to transition from friendship to a romantic relationship—perhaps it should come as no surprise that my high school sweetheart (now my husband) was in fact not part of my high school at all, but part of my church. Dialysis and cystinosis weren’t things I hid from him.

But—and here’s the thing that often defines how able I am to get close to others in a post-dialysis world—

He didn’t care.

It didn’t change how he saw me, and it wasn’t something he needed to dwell on or expected me to dwell on.

He didn’t care, but he was there exactly how I needed someone to be. He wasn’t there to ask me how I felt, or what cystinosis was, or how dialysis went on a particular day. He was there to help me carry on as the normal person that I was, only without the burden of hiding where I went on Monday, Wednesday, and Friday afternoons.

You guys, our first conversation about dialysis went something like this:

Me: I go to dialysis three times a week. It’s where a machine plays the role of kidney.

Wayne: Sounds interesting. And boring. What do you do?

Me: Well, there’s a guy on dialysis who usually has about an hour left when I arrive. He watches Pinky and the Brain and Animaniacs. When he leaves I get the remote, but I just turn off the TV because there’s nothing good on.

Wayne: Is there a VCR?

Me: I think so.

Wayne: Have you ever seen Romancing the Stone?

And just like that, the conversation shifted to the great tragedy that was my failure to see this movie. And, as you may be able to predict, the followthrough was that, to the surprise of myself, my family, and the dialysis nurses, an uncomfortable chair with a hard back was brought in and placed next to my plush hospital recliner at dialysis the next Wednesday, and a blue-eyed boy brought in a VHS to share with a brown-eyed girl whose condition mattered not. All that mattered was that the Ambulatory Care Unit had a VCR and, thankfully, Pinky and the Brain was over.

Fast forward nearly 20 years and he is still the love of my life and cystinosis still takes a back burner to almost everything, but it’s something I can talk about freely with the man who shows up.

For those of us who had a childhood and adolescence before Facebook, it can start to feel unnatural if we let it. I feel like social media has created this weird dynamic where even if I have nothing cystinosis-related at the forefront of my mind, I can log in to Facebook and find someone who does and therefore think about cystinosis 24/7 if I so desire. It’s a fine line to walk, because I care deeply about friends and strangers in the cystinosis community—so I want to know their burdens, their hurts, and their current struggles so I can pray. We are bonded by this disease, and when I talk about how cystinosis enhances my relationships, something that must be brought up is the incredible community I’ve been blessed to be a part of.

And yet.

It’s been an unnatural departure at times from who I am, which is someone unaccustomed to giving cystinosis so much consideration. And I think contemplating cystinosis so often throughout my day is also a departure from the person my husband married. Early in our marriage, we attended four or five cystinosis events in the span of maybe two years. He joined cystinosis Facebook groups and read post after post. I did too.

But it wasn’t us, and it felt bizarre over time, like we were blowing a small thing out of proportion. (I know that not everyone will share this "small thing" perspective, and that's OK.) No matter how much it hurts to let go—and it does hurt, because I have a big heart and lots of love for my cystinosis family—I've learned the importance of healthier boundaries through my initial deep dive into a condition I prefer to leave at the periphery. 

How I connect with others in the cystinosis community in general is complicated. You might think that because we have so much in common, it's easier. But it's not. We don't necessarily have the things in common that you might expect. It's harder for me, and perhaps that is a result of my inability to make cystinosis a focus. On the other hand, there is no denying that a couple of my close friends come from this community. I'd like to think we'd be friends even if cystinosis weren't a factor, but cystinosis brought us together and is something I can confide in these friends about, and I cherish that.

Relationships involve balance—finding it, shifting it, losing it to learn and grow, refinding it. I am thankful for the strong ones I have in my life despite myself. We are all in this life together and it is all worth the effort.