It never ceases to amaze me how well the human body adapts.

I have decided that we are all survivalists at heart, regardless of whether our outward condition reflects an up-for-the-fight or about-ready-to-throw-in-the-towel mentality.

Case in point: despite severe muscle wasting in my hands over the past three years or so, on a day-t0-day basis, I do not notice my shortcomings. When I experienced the first surge of this progressive condition, I often asked Wayne to button my shirts or open brand new, factory-sealed, zip-top bags.

But since discovering (subconsciously, really) the wonders of knuckles and teeth, I button my own clothing with ease and pry open zip-top bags as if pulling cotton candy off a carnival stick. (I’ve had cotton candy on the brain since trying it for the very first time at a Cinco de Mayo event this year.)

So when I do have a wake-up call about the condition of my hands, it can be a bit severe. A photograph from our recent Twin Day event at school, in which I dressed like one of the other teachers and happily posed for the camera, reveals with every passing of the first floor bulletin board that my hands now naturally contract rather than stay firmly open. I find it jarring.

Equally jarring has been my experience with the very serious topic of this blog post, my beloved Nintendo.

For those of you in your 30s like I am, do you remember the first time you played the original Nintendo? I clearly remember losing my first life as an Italian plumber at my friend Vanessa’s house while in elementary school. It wasn’t long before my parents got me my very own console for Christmas.

I was a natural. My mom and I would play Super Mario Brothers (and later, SMB3) late into the evening. The controller felt like an extension of my hand.

Fast forward about 15 years. Wayne and I, shortly after getting married, bought a Nintendo Wii. In those first couple years of owning it, he and I played often. He’s a serious gamer (think Halo and Freelancer), while I’m more of a Mario-and-Sonic type. It was therefore a relief (under all that peer pressure) to find that I still “had it.” I think Wayne was a little impressed.

But like so many new, shiny things, our Wii became dusty. Wayne still played on a regular, though much more infrequent, basis, but I lost interest as I became more involved in the stressful pursuit of school teaching.

Recently, I picked up the Wii controllers after months (or longer – perhaps a year or more) away. At first, they felt familiar – like an extension of my hands.

Soon, though, I found that the muscle wasting between my index finger and thumb had made playing at my previous level impossible.

Jarring.

It’s silly, but it’s hard. It’s hard to be reminded (especially when my body has adapted so effortlessly) that things have changed. It’s hard to grow old at a quicker pace and at an age that is perhaps much younger than my healthy counterparts, who cringe at the crow’s feet around their eyes but think nothing of snapping their fingers, tying a knot, putting on stud earrings, or playing a video game with their nieces and nephews.

It’s frustrating to see my time on the Rainbow Road track in Mario Kart Wii double from last year because my lack of joystick control results in my kart falling off into the abyss too many times to keep up with my computerized competitors or my strong husband. Falling into the nothingness used to be funny. I still don’t take it too seriously, but I have to admit that now it’s a little sad.

It’s frustrating in part because it’s such a stupid frustration to have. I mean, really? Am I really writing about health concerns related to the Rainbow Road track in Mario Kart Wii?

I guess it’s the principle. If I really wanted to beat Wayne at Mario Kart Wii, I’d ditch the nun-chuck with its difficult (for me) joystick and go for a Wii steering wheel that would undoubtedly be easy for me to maneuver.

But if I really want to work on maintaining or building the small hand muscle that I have, I’ll keep forcing myself to try hard things every day.

Ok, so I don’t have time to play video games every night. These days, I seem to have a lot of trouble (between moving, teaching, and writing) even finding enough time to blog or socialize.

But the point is, these quantitative and qualitative reminders point out to me that I can’t give up. I am up for the fight. I cannot let my body imperviously adapt to the detriment of abilities I am losing.

I am thankful for the hard reminders provided by a silly game.

If you’re anything like me, you love lists! So this is a fun HAWMC prompt: list five challenges and five small victories relating to your health topic.

Let’s start with the challenges, because it’s always nice to end on a high note:

1. Writing the words that are on my heart.
2. Wanting to appeal to a fractured community. My rare disease community is broken, just like humanity is – go figure.
3. Finding the balance between truly feeling that cystinosis does not define me nor impact my everyday life – and then writing a book (and blog) about it and realizing that it is, quite simply, what many people will most readily identify as my identity.
4. Allowing my spheres (that of middle school educator and that of health activist) to overlap. This has been particularly challenging lately, as more people in my work environment learn of my book and blog. (It was inevitable, and I cannot pretend that I had any hope that it would never happen.)
5. Being here.

This last one requires a little more explanation. I am so beyond thankful to be alive. I don’t mean that I struggle to put one foot in front of the other. I mean something more inscrutable. At a recent cystinosis function, I sat at a circular table meant for ten – but there were only nine of us. To my right sat the mother of one of my childhood friends, Erin, who lived with cystinosis for a brave quarter century before passing away nearly a decade ago. To my left sat my husband, and to his left, an empty seat. For whatever reason, that seat became Erin’s seat in my mind. I started crying in this very public place (though a private function, there were hundreds present) and in front of Erin’s mother. Why? Because I was there and she was not, and I could imagine the conversations she and I would have had if she had been in attendance. But I also think Erin would have reminded me that being here (specifically how I mean it for the purpose of this list – in light of others having passed away too young) is not only a challenge, but a victory as well.

…which brings me to my five small victories:

1. Being here. Okay, this isn’t a small victory at all. But it is a victory – not one of huge, shout-it-from-the-mountain-tops proportions, but one of huge, drop-down-on-my-knees-in-thanks proportions.
2. Taking Cystagon this morning without getting nauseous.
3. Eating a Krispy Kreme doughnut.
   Yes, it’s totally a victory that the Krispy Kreme a few miles away from where I live just reopened its doors after several years of nonexistence. It’s also a victory that I can eat one with ease given the prognosis I was handed regarding my esophageal muscles just half a year ago. (Or maybe this isn’t that huge. The things are so drenched in fat that I suppose they melt in your mouth and simply slide down your throat. But I’m still going to consider this a victory.)
4. Reaching new heights. We were victorious in the Yosemite permit lottery, and we’ll be hiking Halfdome in June!
5. Understanding the value of friendship through thick and thin. I think a trip to Utah may be in order very, very soon!

On a totally different note, I am aiming to finish the Kindle version of Roller Skating with Rickets by next month. Stay tuned!

smartly i have never climbed, shyly beyond
any cystinosis, your adolescences have their flaws:
in your most lion-hearted challenges are things which bless me,
or which i cannot introduce because they are too falsely sought

your warrior look peacefully will uninvite me
though i have befriended myself as thai iced tea,
you understand always arabic in myself as empathetically hiking
(adoringly, lovingly, truly) her copious mountain

or if your workaholic nature be to thank me, i and
my introvert will vocalize very fastidiously, cruelly,
as when the cystine of this cystinosis write
the muscle wisely everywhere sharing;

nothing which we are to fight in this heart live
the eyes of your heartbreaking smile: whose friendship
veto me with the disease of its lover,
treasuring adulthood and authorship with each swallow

(i do not scream what it is about you that i cherish
and love; only something in me holds
the strength of your spirit is more cankerous than all)
weakness, not even the teacher, has such rare student

Dear Jessica,

You will fight everyone this year: your parents, your doctors, yourself. You will be brought to the mercy of a machine, but in your pride you will never cry uncle.

But keep in mind that you are not the only one with challenges. While you harbor resentment toward your parents for keeping a watchful eye on you as you take your medicine every six hours – exactly as they have ever since discovering the transgression of your secretive noncompliance four years ago – remember that the thought of you being ill breaks your mother’s heart.

And the doctors who hurt you only seek to help you. You will soon meet one who will drive this point home and finally touch your heart with his stethoscope.

As for fighting yourself, it will only harden your heart.

(Perhaps the overall theme of being sixteen, then, is not the war – but the heart. You just don’t see it that way yet.)

Have you heard that old cliché, that the things that happen to you now won’t matter in ten years? That all those seemingly insurmountable obstacles will soon be inconsequential?

Nothing is inconsequential. In this life, in this childhood, in this adolescence, in this year – from the pre-calculus tests you’ll ace to the kidney function tests you’ll fail; from the worn path you’ve created on the linoleum floor between the bathroom and the refrigerator in your endless cyclical quest to satiate your thirst and empty your bladder to the bed where you spend so much of your time these days; from the candy, sodas, and sweets you’ve never tasted to the French onion soup at Mimi’s Café that you devour to answer your body’s cry for more salt to replace what it’s losing; from the strangers who judge your height to mean that you are younger than you are to the friends who know nothing of cystinosis owing to your own conviction that you are normal – there are no small things.

Everything is shaping you into who you are and into who you will be. Even your act of ignoring it all is slowly molding the person I know so well.

You live a double life: you can go from high school cheerleader eyeing the football players in one instant to hospital patient fighting for her life in the next. But neither of these are accurate descriptions of who you are.

Today’s HAWMC is to create a personal slogan based on the now-famous (and trendy) 1939 British poster, “Keep Calm and Carry On.” The original poster was designed to assure people in the midst of World War II that things would be all right.

I think we all need this assurance at times. When living with a progressive condition such as cystinosis, worry can consume you if you let it. But as we all know, worrying doesn’t add quantity or quality to our lives. (It isn’t always completely useless, though – recently, worry that I had left my flat iron on after I left for work prompted me to go back and check. Indeed, my worry was justified. But worry that is not remedied by action – in other words, worry about that which is out of our control – is detrimental.)

So at times I remind myself: there is a fantastic treatment for cystinosis. It isn’t always pleasant to take and I wish there were an alternative, but I am so thankful that Cystagon exists. It’s something that I cannot take for granted, especially after going without it for a decade and now living with the consequences.

Each day is a blessing. When I worry about the future, I am desecrating the gift of today. All I can do is all I can do – and I can do a lot. If I make sure I treat my cystinosis, exercise my body, enjoy my friends, work hard at my job, and keep my faith, there is no reason to worry about what else life might throw in my direction.

It isn’t easy, but I also know that I’m not facing World War II.

Keep calm, keep with your obligations to your body, and keep perspective,