"You must have a mild case."
A beautiful friend of mine in the rare disease community shared recently that I come across as having a mild case of cystinosis. It’s not the first time I’ve heard this, and I tend to brush it off without rebuttal. I’m not one to try to convince others of my degree of sickness or health. After all, “Fight for your limitations and you get to keep them.” I focus on gains over losses, although I’ve had plenty of both. Usually I just respond with an abbreviated version of my story. But here’s a truthful account of it:
Dialysis was revealing.
I’ve been very fortunate. I was able to start cysteamine when I was 2 years old and it was still highly experimental. As a child, I went into end stage renal failure at age 14. I did 2 years of dialysis while attending high school, starting at age 16.
My feelings about dialysis were mixed then, and they’re still mixed now. I wanted dialysis rather than transplant because my academic success was so important to me and I didn’t want to interrupt it. In hindsight, that seems kind of silly - and yet, it was in my grades that I found my peace and motivation. (I see now that it should have been in my faith and in my loved ones where I found these things.)
I was stubborn, which isn’t exceptional for those growing up with unique health challenges. My dialysis doctor told me to expect to slow down. I got a part-time job. He told me my grades would slip. I increased my academic load. My school waved their truancy policy in my face. I raced out of surgery one morning so I could make it to my calculus class in time to take a test I was told I wouldn’t be able to make up. I aced the test and landed in the emergency room that evening, which was a trade-off that seemed more than fair in my immature mind.
And yet. I was a brat. And I’m sorry, the excuse “she doesn’t feel well” should never be used to allow for rudeness and surliness. When I wasn’t working, going to school, or having dialysis, I was either sleeping or being awful to loved ones. I was terrible to one of the dialysis nurses on a regular basis. I made it clear that I preferred someone else. I wouldn’t smile for photos. When my dad picked me up from dialysis I’d go silent and put the seat back, sometimes not even saying hello. I’m sure he thought I felt bad. I’m sure I did feel bad. But to not even say hello to the person who dutifully and lovingly picked me up after my treatments? I don’t recall having laryngitis. Come on.
If social media had existed, you may not have known I was on dialysis.
But had I been on Facebook in those days (thank goodness it wasn’t around), here’s what you would see: a high school student with a 4.5 GPA, a first violinist in the school orchestra, a part-time technician for five local elementary schools, someone who left post-op recovery rooms to make it to a silly calculus class on time... and someone whose dialysis catheter failed so many times that at one point she was having surgeries every other month or even every few weeks. You’d see my dialysis time increase from twice a week for 2 hours to three times a week for 3, 4, 5 hours… whatever was needed to get the job done with my poor flow rates. And all the while, you’d see my up my game.
But actually, this is unrealistic, because it’s unlikely I would have shared any dialysis news online. Not a single one of my friends at school knew.
But if you did know, perhaps you’d feel inspired. “She’s so sick,” you would think. “But it doesn’t stop her.”
But you’d be wrong.
Emulate character, not outward appearances.
It did stop me. It stopped me from being kind. And like I said, nothing can excuse a lack of human decency.
And being a do-it-all (and a know-it-all) isn’t worthy of emulation. Being a gentle and kind human being is.
Some who knew me during those years might say I’m being too hard on myself. I disagree, and I think it’s important for me to disagree in order to continue striving toward a more love-centered life. It doesn’t hurt my self-esteem to admit to these things or let them remain on my mind. I’ve asked for forgiveness and I know this isn’t a burden for me to carry. It’s a lesson for me to take to heart.
Dialysis was a hugely foundational part of my life during a critical time in my psychosocial development. And while it gave me so, so much — I honestly wouldn’t remove dialysis from my past even if I could — I would fight the making of a stubborn heart if I could go back and do things differently.
We're all living a lie — but that doesn't mean it's OK.
I just messaged my husband and told I was working on a blog post about appearances vs. reality, and he said, “In a way, aren’t we all living a lie?”
And we are. Social media has perhaps made this a more ubiquitous topic of discussion (“don’t compare your worst days to what you see on social media, because everyone’s just posting their best days”), but inauthentic living has existed since the dawn of man. And neither the person living her life nor the outsiders observing it is innocent: We all tend to determine someone’s wellbeing by factors that truly don’t matter, like high school GPA, marital status, and career position, among others.
But since I don’t see a social paradigm shift any time soon, we owe it to ourselves and our loved ones to live with honesty. That doesn’t mean taking all your beautiful moments off Facebook or Instagram. It doesn’t even mean adding the ugly moments. It doesn’t mean spilling your guts in a blog post that everyone can see. It means building authentic relationships based on love and truth. This, for me, is something I’m forever working on.
So let’s come full circle with this circumlocutory blog entry: You see my pictures on social media, often of my mountain hikes. You know I’m married and fully employed. You assume my cystinosis must be a mild case.
Is it? Here's what I know.
We’re all living a social media lie to a certain extent.
The things we value (marital status, career status, motherhood status) don’t tell the whole story and aren’t, in and of themselves, worthy of adoration.
I once simply shared with someone in the rare disease community that I was 36, married, and working full time - and his response was that he wanted his child to turn out “just like” me. Don’t do that. It perplexes me. Desire for your child to turn into a kindhearted adult who gives rather than receives. Who loves his neighbor as himself. Who has faith that can move mountains. Who is humble. The other stuff doesn’t matter and isn’t indicative of a healthy heart and soul. You know who I want to be just like? My sister. Because of her heart, not because of her worldly accomplishments. She's building up treasure in heaven.
One of the genes I inherited is considered indicative of the most severe type of cystinosis, according to a specialist researching genes and the cure. In truth, I don’t think researchers fully understand how mutation translates into experience as of yet.
I’m here by the grace of God, undeserved but fully given. I have had so many friends over the past three and a half decades whom God has called home. I am not more worthy.
I’m still healing on a daily basis, even while my health declines. Healing is something that goes beyond physical health.
I have this glass of water. It’s not half full. It’s not half empty. It’s overflowing no matter what challenges come my way, because circumstances aren't what fill it. I don’t always live in a way that shows my gratitude for this. I’m not always grateful.
Happiness is designed to be fleeting. Joy puts down roots and isn’t based on circumstances.
In 2011 I was in pulmonary decline.
I collapsed during a June 2012 strenuous hike. Park rangers were called and had to give me oxygen and support me back down to the ranger station. Two months later, I returned for redemption. The hike took me 17 hours. Most guide books list it as 12, tops. I cried, but I finished, sans oxygen.
I've been helicopter-lifted off a mountain top when the nearest exit was 15 miles away.
My husband’s support is precious beyond words.
I will forever be the slowest person on the trail. This is why I don’t typically hike with people other than family: I hold people back.
I left teaching after nine years in the classroom due to a deterioration in my voice quality due to cystinosis. The job was my passion. A parent later told me the students respected my teaching, but mocked my voice on the playground. Ah... the joys of middle school. And yet for some reason, I loved reliving middle school on the other side of the desk. I stay in touch with some of my students and love seeing where life takes them.
I’ve found new passions. There are so many things to do in this world, and so many people only ever experience one career. I consider myself so blessed to have moved into the editorial field.
Most people don’t understand me over the phone. Some people will feel sorry for me over this. Don’t - I always prayed to be the kind of person who was “quick to listen, slow to speak, and slow to become angry.” Be careful what you pray for! While there are certainly frustrations, it’s another feature of my life that I wouldn’t remove for anything. The gifts this supposed “loss” has granted me are something to share another day.
Clouds Rest hike: I cried.
Mt Whitney hike: I cried.
Kilimanjaro hike: I cried. I lost my appetite and 15 pounds over the course of the 6-day trek. For the last 3 days, I didn’t urinate. My transplanted kidney survived in what I can only describe as a miracle.
I have fallen in love with God’s creation because of a pulmonary function test that drove me to the mountains. I feel so much more healthy, spiritually, then I did before the diagnosis. But I have a long, long, long way to go.
I love this life I've been given in ways I can't describe.
Degree doesn't matter.
In the end, I don’t know whether my cystinosis is “minor” or “major” according to the standards the world sets for physical health. I know that spiritual health is far more important, and I have a long way to go — but I've been blessed with significant challenges to help me get there. I pray to become more kind, not to become more physically healthy.
I've done it too.
So what do we miss when we let social media or societal criteria drive our assumptions? I do it too. And here's what I think I've missed:
A chance to learn someone's story. We're social people. You don't generally have to dig very far to hear someone's heart. There are so many people with complex illnesses that I've "read" based on the shallow things that I see. I'm dismissive. I'm the one who misses out.
A chance to find what's really worth emulating. When we assume someone is better off, we ignore how their lives have been built through challenges and how God has worked. In my experience, people's lives are rarely easy. When I dismiss hardship that may exist beneath the surface, I attribute their success to luck rather than any effort.
An opportunity to grow together. We all have flaws we don't show the world. When we put our assumptions aside and get to know someone, we allow ourselves the opportunity to lift them up and be lifted ourselves.
Reach out to someone you've typecast, labeled, or pigeonholed. I promise you'll be surprised.