#rarediseasejournalingchallenge Day 4

Let's share our obstacles related to living with or caring for someone with a rare disease! I'm intentionally using "obstacles" here instead of the more ubiquitous "challenges" because to say something is a challenge implies that it will be a lifelong struggle; to call something an obstacle is to imply there is a way around it or a way to remove it, if only we can find the path. (Of course, challenges exist, and some really are lifelong. These are not the focus of this prompt.)

By sharing an obstacle with others, we open ourselves to advice and support. Maybe someone out there has a solution. (Bareful to avoid putting something out there that you don't want "unsolicited advice" on! The point of this sharing is to get input.)

#rarediseasejournalingchallenge Day 3

This is a fun one and a good way to reflect on who you were, who you are, and how far you've come.

Think back to a time before you received news of your child's medical condition. Write a letter to this "pre-diagnosis self." If this doesn't apply to you (i.e., if you are the one with the rare condition and have had it since birth), choose a significant moment in your rare disease journey (in my case, for example, it might be dialysis or kidney transplant) and write a letter to the "pre-" you.

Remember to be gentle with yourself. Chances are, you have a tougher skin now than you did then! Isn't that one of the great side effects of rare disease? It challenges us and grows us, and the things we couldn't have imagined handling well (or at all) years ago are now situations we've successfully dealt with hundreds of times. Per day. Ha!

Here's the first journaled page of my letter with the complete text of it typed below.

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.

At biennial cystinosis gatherings, you shut yourself off to closeness with others. You learned a long time ago that just when you build a friendship with someone, she might not be around for the next conference. Though you don't do it consciously, you smile for photo ops and then turn your head from those who remind you of who you are: a temporary, mortal being.

But someday you will learn that all things, ephemeral or enduring, should be cherished for what they are while we have them. And relationships live on in your heart long after a person has passed away; there are also huge, happy reunions awaiting us in heaven. So in those moments when it seems possible amidst all the obstructions to create a clearance for your heart, allow yourself to love, connect, feel.

I hesitate to share these things with you, because I am intimately familiar with where you're at and I know that I will only make you more obstinate. That's okay, too. I do not seek to make you somehow less cerebral and more emotionally aware of what you are going through. Perhaps your current denial is what you need. It is your therapy, and that is why you resent the words of doctors who would claim that you need to have yet another conversation with a social worker who wants you to talk about that which you have eliminated from your mind.

There is no need for me to change your present, my past. You have to walk through this valley, and you'll have to walk through one that is even lower, deeper, wider, lonelier. Like the mighty Colorado River created something beautiful when it carved the Grand Canyon, the turbulent waters of being sixteen will rush through you and deliver wholeness in the midst of the chasm. God will make sure you don't get carried away with the flood.

You'll make it. That life you visualize when you close your eyes? The one where you are no longer at war with the world around you? It is here. I am here, exactly like you know you will be. I'm not telling you anything you don't know. You'll find your place and realize that the battle is already won.



P.S. That boy who is currently breaking your heart into a million pieces? Let him. Have faith that eventually he will put the pieces back together.

P.P.S. You're going to stand atop Mt. Kilimanjaro one day, as well as the tallest mountain in the Lower 48 and a quite a few other gems. I'll leave you guessing whether or not there will be escalators to take you to the top, since I know you can't imagine getting up a mountain any other way.

#rarediseasejournalingchallenge Day 2

Here's today's prompt!

Make a list of 10 things you are grateful for that you can relate to having a rare disease or having a loved one with a rare disease. Have an attitude of gratitude!

November is traditionally a month of giving thanks, and when we acknowledge the good things in our lives, we tend to feel more upbeat and content. But did you know there is actual scientific research on the benefits of being grateful?

Researchers are finding that gratitude can:

  • lower blood pressure (source here)
  • increase HDL or "good" cholesterol / decrease LDL or "bad" cholesterol (source here)
  • reduce stress (multiple sources)
  • lower creatinine (source here)
  • decrease Hemoglobin A1c levels (source here)
  • improve heart health, sleep quality, and the immune system (source here)

So let's be intentional about practicing gratitude! The great thing about gratitude (and something embodied by this blog's title) is that it can be felt even in difficult circumstances if only you know where to look. Maybe you aren't grateful for a particular situation you are in, but you might be grateful for some of the positives that have come out of it.

Here's my list and journal page. In truth, there is a blog post waiting to be written about each of these items and the connection with cystinosis—but that is another project (or 10!) for another day.

I'm grateful to cystinosis for:

  1. An incredible community of strength and support
  2. Providing me with an analogy for redemption (from sacrifice, life—a kidney transplant)
  3. Allowing me to hear the mountains call
  4. Medical knowledge 
  5. World travel (Tanzania, Turkey, Germany, France)
  6. Helping me discern the identity of my soul mate
  7. Positive impact in my professional positions
  8. #inspirationporn
  9. Weakening me so I must rely on strength outside of my own
  10. Beautiful flaws

#rarediseasejournalingchallenge Day 1

Let's talk about hope!

Hope is a word that ignites strong emotions in many. It's a little word with big possibilities.

Hope is something to cling to on our bad days and something to gift others with on our good days.

Today, spend some time journaling about hope. You can write an acrostic poem (I did a play on this); describe an experience in which hope carried you through; list future hopes for yourself, your child, or your community; or just sketchnote any thoughts that come to mind.

Here's my journal page:

Hope can be a tricky, fleeting thing. Since it is intangible, it can be hard to explain to others and can at times seem to lack justification. False hope can lead to difficulty in ever hoping again. But ultimately, we all need hope. 

NaBloPoMo November 2016This blog post is part of the NaBloPoMo challenge.

Sunflowers by the Side of the Road

Wayne and I were on the way to Sonora Pass for a hike a few weekends ago. As I was driving the sun was rising, and I couldn’t help but notice that the dry California landscape was bathed in beautiful, soft light that gave everything a surreal quality and warmth that foretold environmental serenity rather than fully disclose the truth of the triple digits yet to come. The roadside sunflowers particularly caught my eye: I love the wildflowers of spring, but these autumn beauties are truly my favorite.

Some time after the sunflowers were a distant sight in my rear view mirror, I lamented that I hadn’t stopped for a photo. Why hadn’t I? I can become so focused on time and tasks that it may have seemed pressingly urgent to get to the trailhead to accomplish the chore of the day (ironically, a walk in nature), but that didn’t seem to offer a full explanation of why I had passed up the opportunity to capture gorgeous surroundings along the way. Logically I knew a half-hour delay in our start time would not make or break the hike.

“You’ve started letting the perfect become the enemy of the good,” Wayne said.

His assessment (or, more accurately, Voltaire’s) is correct. With my eyes I soak up so much beauty each and every day, but especially when I am outside in nature (yes, even that nature that pushes back against the manmade freeway). I feel inadequate to capture it, to describe it, to recreate it. So I don’t.

But my assessment is correct, too. I become too task-oriented to slow down and appreciate blessings unrelated to the task, and I lack the focus to practice the craft of storytelling through words and pictures so that I may improve—never to perfect, but maybe to adequate.

Because I’ve made perfect the enemy of the good, I’ve created an unattainable goal and made practice a waste of time.

So here’s to metacognition and a desire to shift gears to embrace practice and the good. (And to capturing those sunflowers on the way home.)

30-Day Rare Disease Journaling Challenge

Hi there! Something I’ve been contemplating for a while is a rare disease community journaling challenge that is all-inclusive—designed not only for those who have a rare disease, but also for parents, friends, caregivers, and supporters. This idea is inspired by the fact that while we all share a common experience, we don’t experience it the same way. I feel like I have a lot to learn from those who play other “roles” in this tight-knit community, and I can't wait to do so.

By sharing our journal pages with each other, we not only reap the cathartic rewards of a traditional journaling challenge (processing our own thoughts and feelings by getting them out on paper), but we also get the therapeutic benefits of learning others’ experiences and receiving feedback on our own. This sharing is of course optional; share one page from the challenge, share all thirty pages from the challenge, or share none at all and still use the challenge to process through your own thoughts in private.

This will be very casual. I’ll share a prompt here each day in November, along with a photo of my own journal page. If you’d like to, share yours on Facebook or Instagram with the hashtag #rarediseasejournalingchallenge. Make the post public so non-friends can find it, or choose to share only with friends or a certain group. It’s up to you!

Although I have a rare disease, prompts have been created with input from parents, friends, and caregivers, so hopefully they are fairly universal in their appeal. Have fun!

Don't Call Me Inspirational by Harrilyn Russo

This book had me at the title. Although it's been hard to put words to the reason why, I've always felt uneasy at being called "inspirational" by people who know nothing other than my statistics—my age and my diagnosis at worst, perhaps also my marital and career status at best.

In her book, Russo puts words to my unease and also provokes thought on the topic of disability. Although I have never identified as disabled, there are several areas in which Russo's experience can be correlated to life with a rare condition. Russo grew up in an environment where normalcy (and denial of disability) was not only encouraged, but in some ways, demanded. Later in life she became a disability rights activist, which plunged her into a world where she was faced with many things she had become accustomed to denying. Through it all, she realized that living with disability alone (even if "living" included being on her own, earning a graduate degree, pursuing a rewarding career as a therapist, and finding love) did not warrant an "inspirational" label (or, perhaps worse, "courageous") and that this label in such cases is, in fact, a demeaning reflection of lowered expectations. Although this is a minor point in the overall narrative of her book, it is one I take to heart.

In one instance, she describes telling a story about the frustrations and hilarity of being taught to drive by her mother to a group of her students. Although the group in general responds with laughter, she notices one student who is crying. She realizes that this particular student has heard tragedy in a very typical experience (emphasis mine):

"I have been telling a tale about my mother teaching me to drive. My mother's persistence and insistence despite my resistance make everyone laugh except this student. My mind is flooded with questions: What do you see or hear that transforms a typical mother-daughter tangle into a tragedy?

"How can I convince you that the tragedies of my life have to do with commonplace disappointments, disillusionments, and losses—the lover, the job that got away, the death of someone dear—not disability? Perhaps I can't. You need to keep me at a distance, as though I were contagious. To see me as a sister scares you, shakes you, shocks you. Then I would be like you, and what's worse, you would be like me. Better you should see me as courageous."

This really resonated with me. On social media, for many people, I am not a friend or a sister. I am a rare disease patient and a role model. I can't cross the line that's been drawn (passive voice intentional; the blame may well fall on me) so I remain the courageous one for conquering the ambiguous feat of "living with cystinosis." (In my opinion, there can be no courage without choice, and I think it's a ridiculous misconception that the things I do are hard simply because I have cystinosis as a beautiful backdrop to my life story.)

Although Russo has CP (cerebral palsy), which is very different from cystinosis, she and I do share a similarity in that we both have difficulties with unclear speech. This is something that has been the hardest adjustment for me, as it only became an issue around the time I entered my 30s. Like Russo, I sometimes ask myself this question, posed to herself in her book: "Having impaired speech was simply a fact of my life; why couldn't I acknowledge that fact and move on?"

But I think reading Russo's story helps me to answer this question for my own part. As an activist, Russo engages with the disability community (and with communities in need of disability education) often in that role. But it's only a part of who she is. At other times, her condition is not front and center: life is. (And let's not confuse or equate any condition with life itself.) Maybe she's focused on paying rent. Or making a grocery list. Or doing any number of things that have nothing to do with CP or activism. As she describes with regards to her impaired speech when making a routine phone call (censorship mine):

"I was willing to deal with issues of power and stereotypes when I deliberately chose to take on the activist role, not when I was trying to make or receive a ... phone call."

She describes how even if she were to confess her speech difficulty when making a phone call as a way to explain why she is hard to understand, it is not something that would merely garner an "okay" response that would enable both caller and called to move on. Such confessions always seem to be not simply accepted, but instead tragically received with the inevitable "I'm sorry."

"Such a response would be judging my life as something to be sorry about rather than simply a life that could be good or bad or both or neither. And that judgment infuriated me, made me want to scream. Maybe I was judging the caller unfairly. Maybe she or he would simply say 'okay' in response to my saying I had a speech disability, and then the conversation could move on. But I seriously doubted it."

Russo eventually finds that a Botox injection to her vocal cords, especially a single initial treatment, brings clarity to her voice. Her response to this treatment (which eventually wears off) is enlightening: 

How sad that health, sanity, and intelligence are so often attached to communication. (Then again, should good health necessarily be attached to, say, speechless athletic ability any more than poor health should be attached to speaking ability? We need to look at the whole person, and also listen closely to how that person identifies his or her health.)

Russo also celebrates the coming together of individuals with disabilities and describes what that kind of community means to her. There is something very cathartic that comes with finding that similar person in a crowd:

"And I have fond memories of exchanging "You've got to be kidding" looks with a group of disabled women at another women's gathering when a nondisabled member of the audience made a patronizing "You're so inspirational" remark to a disabled woman who had just completed her presentation."

Russo motivates me to speak out more and look for ways to help adolescents and teens avoid the victimhood trap. I was intrigued by her experience leading a mentoring program in which women with disabilities were matched with adolescent girls with disabilities. She found that when conversations about disability and coping were forced, success was minimal; however, the very act of these girls doing normal things with their mentors—visiting places of employment, seeing the women's accessible apartments and living spaces, taking public transportation, exercising independence—made the girls gain in confidence and feel assured of an independent future. 

Russo is hard-hitting in her description of how she views herself, but she also takes her readers on a journey through her evolution in this area. 

Other favorite quotations:

"I'll tell you why I am inspirational: I put up with the barriers, the barricades ... you put between us to avoid confronting something—probably yourself—and still pay the rent on time and savor dark chocolate. Now that takes real courage."

"There's nothing tragic about my life except other people's negative ... assumptions."

If this topic interests you, I also recommend Stella Young's TED Talk, I'm not your inspiration, thank you very much.

Where I Went Wednesday: North Beach

Each Wednesday I leave my office in Levi Plaza with camera in tow and explore a new neighborhood in the city of my birth.

Although I’ve lived in the Bay Area my whole life, I am a suburbanite through and through, and it wasn’t until I started working in San Francisco (a half-hour subway ride from my current suburb) that I started spending time there regularly.

I see myself as part tourist, part local; an introvert who naturally seeks out the less-traveled places but an amateur photographer who is drawn to the vibrancy and hard lines of the bustling areas as well.

My walking route from Levi Plaza today took me south on Sansome St. until I reached Broadway, where I turned right (west) and walked uphill until I hit Columbus St., considered one of North Beach’s main drags. North Beach is our Little Italy, historically a place home to recent Italian immigrants and second-generation Italian-Americans.

Italian flag colors abound, but the streets are multilingual: the babble of tourists of all tongues, as well as the chatter of local Chinese immigrants, fill the ear

Italian flag colors abound, but the streets are multilingual: the babble of tourists of all tongues, as well as the chatter of local Chinese immigrants, fill the ear

Starting at the iconic City Lights Booksellers & Publishers, I walked northwest on Columbus St. and explored various side streets on my way to Washington Square Park, where I turned around and navigated toward the Montgomery St. BART station, photographing other sights (such as Belden Place, an alleyway replete with various eateries with cozy sidewalk patios shielded from the wind). By following this path, I only touched upon the southern part of North Beach, and I plan to see the northern part on another day, when I am on the way to Russian Hill.

A word that comes to mind when exploring this part of the city on foot is juxtaposition. Although the North Beach title suggests it is distinct and discrete, in fact the area is pressed upon on all sides by other local neighborhoods and hotspots: Chinatown, Russian Hill, and the Financial District all border the historical Little Italy. (In fact, North Beach is seeing a major decline in its Italian population and a huge increase in its Chinese-American and young professional demographics.)

Right across the street from a Chinese elementary school is a strip club, highlighting one of the many disparate features of North Beach

Right across the street from a Chinese elementary school is a strip club, highlighting one of the many disparate features of North Beach

You can see a blending of cultures here, as well as the close proximity of incongruous places, such as the Chinese primary school in the red light district. One of the best places to get tiramisu and an espresso is Caffe Greco, appropriately named after the oldest bar in Rome but with a name that translates as Greek Café, appropriate because Caffe Greco in Rome was opened in 1760 by Nicola della Maddalena, who was Greek. 

A quintessential representation of blurred culture lines: an Italian flag and a Chinese/English bilingual shuttle stop sign adorning the same pole

A quintessential representation of blurred culture lines: an Italian flag and a Chinese/English bilingual shuttle stop sign adorning the same pole

Beatnik culture is also heavily represented, and provides endless photography opportunities.

Urban architecture and its adornments can often serve to welcome or to repudiate; I was fascinated by all types.

Inviting tiles beside an unwelcoming barred doorway

Inviting tiles beside an unwelcoming barred doorway

I feel that I've barely scratched the surface, but about two hours after enjoying my North Beach tiramisu, I realized that the extra walking had burned those calories and made me hungry for dinner, so I headed home.

Saints Peter and Paul Church, my last stop before turning around; Sam's Grill at the end of Belden place, en route to Montgomery Station

Saints Peter and Paul Church, my last stop before turning around; Sam's Grill at the end of Belden place, en route to Montgomery Station



I feel like this sidewalk graffiti symbolizes life’s complexity. Sure, there is clearly a bigger, bolder arrow, but it also appears as though it is crossed out (maybe). The arrow pointing left is much less bold and clear by comparison, but it definitely hasn’t been crossed out.

So which is it—was the thinner arrow made first, and because it pointed in the wrong direction, a fatter, more obvious arrow was made to guide the questioner? Or was the fatter, more obvious arrow made first, and—because it pointed in the wrong direction—crossed out in favor of a thinner arrow (its thinness perhaps due to all the ink being used up for the fatter arrow)?

I walk over this section of sidewalk every day on my way to and from work. So where do I think the answers are? Straight ahead about one block, at the American Grilled Cheese Kitchen. Yum.

Taking Time to Smell the Tulips

I love the perks of working in San Francisco. At first I wondered how I would handle the commute, but it has turned out to be fabulous to take advantage of public transit—and so much easier than the drive to Mill Valley, where my office was previously located.

I am still exploring all that SF has to offer. A couple weeks ago, I learned about Pier 39's annual Tulipmania, a blossoming of 39,000 tulips. Unfortunately, I learned about the event pretty late in the game, when many of the tulips (and other beautiful flowers) were starting to droop and wilt. But I'm a person who finds the juxtaposition of beauty and imperfections to be awe-inspiring—and very human. So that these still-brightly-colored blossoms also included some flaws made them, in a strangely paradoxical way, perfect.

From afar, these flowers appeared perfect, a bright splash of color. It wasn't until I came closer that I saw that this was not the case. It reminded me of the image we present to others versus the imperfections that become evident when we invite people to come closer. When we step into the light and allow our flaws to be seen, we are more authentic.

From afar, these flowers appeared perfect, a bright splash of color. It wasn't until I came closer that I saw that this was not the case. It reminded me of the image we present to others versus the imperfections that become evident when we invite people to come closer. When we step into the light and allow our flaws to be seen, we are more authentic.

I craved a giant field abloom with all 39,000 tulips. But Pier 39 is a bustling shopping and tourist area, with no room for such luxuries, and the flowers are despersed throughout the pier in planters. This presents another stunning juxtaposition—that of the material and the natural.

Orange is my favorite color—except when it comes to clothing. It takes a special complexion to pull off orange, so I'll let the flowers wear it for me.

Orange is my favorite color—except when it comes to clothing. It takes a special complexion to pull off orange, so I'll let the flowers wear it for me.

Maybe next year I'll go a bit earlier in the season, when the blooms are at their height. But there was plenty to appreciate in 2016. (Maybe this is a metaphor for loving the here and now. Or maybe that's too much of a stretch. Either way, what a beautiful bright side to working in the big, congested city!)

It Is Better To Have Loved and Lost

I went for a walk today, photographing the early glimpses of spring.

When I was young, my dad would go out when the cherry blossoms started blooming and pick a small branch to place in a vase at the center of our dining table. Sometimes the trees around us would flower twice (though not from the same buds) before the dry summer: first, when we received a couple-week-long break in the rain before it was officially spring, and again when the sunshine started to more permanently warm the branches after the rainy season had started to peter out for good. Despite never minding the rain, I always looked forward to these beautiful reminders that the winter storms were behind us.

It’s shaping up to be a two-bloom year. California may be in the middle of an El Nino season, but we have also received two weeks of dry, warm weather this February, and the cherry, plum, and dogwood blossoms are featured prominently on suburban streets and in urban parks alike.

But with rain’s return forecasted for later in the week, all too soon these blossoms will be washed away. We will remain hopeful that flowers will reappear in all their glory in a month or two, and we will cherish that this was a year of early blooming, but we will mourn this loss of color and beauty.

As I cherish these moments and prepare for imminent loss, I ponder the age-old question: Is it better to have loved and lost than never to have loved at all? Would we better off without these early blossoms, because just as we begin to hope that winter is ending, this bright hope is snatched away from us?

In my family we are mourning a loss of something far more precious and beautiful than cherry blossoms. We are morning the loss of a baby, a heartbeat seen and a heartbeat lost. And I wonder, with bitterness at times, why this bright hope was given only to be snatched away. If only I had never seen a heartbeat, I tell myself. If only I had miscarried before knowing what it was I carried. If only I had never loved at all.

But when I really consider this season of our lives, I realize that if this loss were to happen all over again, I would still want to experience the joys that came with encountering a new life, knit together with a purpose yet unknown.

As for it being a two-bloom year? It is something I cannot even begin to ponder at this point. A second burst of color does not erase the memories or replace the beauty of February blossoms. But like the flowering trees that will surely flower once more, the beautiful story of our family doesn’t end here, we pray for brighter days ahead, and we dare whisper hope of another life.

7 Ways You're Making Life With Rare Disease Harder Than It Has To Be

The other day I read a post on Thought Catalog called 10 Ways You're Making Your Life Harder Than It Has To Be. As I was reading, I got to thinking about how this list is so easily adaptable and expandable to include specifically living with a rare disease. To that end, and because I can't resist making a list, here's my take on making life harder than it has to be. Disclaimer: I highly value the individual experience and don't like to generalize, so take each of these with a grain of salt. Some of this may ring true for you or none of it may ring true for you. Only you know how you should live!

1. You lament the everyday.

I'm not saying you're not allowed to complain (though we all, myself included, could probably stand to do a lot less of it). Are you battling a new cancer diagnosis? Dealing with the death of a family member or beloved pet? Facing a layoff at work? Please, lament away.

What I mean when I say the "everyday" is that for many of us with a rare disease, there are things we may encounter every day that cannot (at this time) be changed. In my particular community, this means taking medication every six hours or every twelve hours. Those with cystinosis also may use eye drops every waking hour.

This may sound blunt, but I mean it kindly. If you are lamenting a medication that you have taken every six hours for decades, you're not doing yourself any favors. This medication is part of your life. A frequent part of your life. Do what you can with regards to efforts to eliminate its need (through fundraising for a cure or participating in research), but please don't let it steal your joy. Wasting angry words or thoughts on something that is a daily part of your life allows in a certain amount of negativity toward life itself. You don't need that.

You don't have to jump for joy every time you must engage in one of the daily activities associated with having a rare disease. That's probably as disingenuous as it would be if I jumped for joy every time it was time for me to brush my teeth (though I admit, I do like brushing my teeth). But allow your must-do routine to be either neutral or positive, because it's not going away anytime soon.

This one can have a profound effect not only on your overall emotional well-being, but also on the well-being of others. If you are a parent, try not to lament your child's everyday. In the rare disease community, that can lead to resentment of medication or even noncompliance later on.

2. Your rare disease is the star of your show.

Where you put your thoughts, there you put your life. It is healthy to embrace the unique traits that make you who you are. But too often it seems that we relate everything in our lives to the rare disease that we have, and when we do this, we are allowing IT to have US. Sometimes when we are young, we get people's attention by having a rare disease. I clearly remember being in a hospital room when I was a child and having at least a dozen doctors come in to look at my eyes, because seeing cystine crystals in a patient's eyes is something they had only read about in medical school textbooks. I was the star of the day because cystinosis was the star. Experiencing these sorts of things in childhood can naturally lead to giving your condition a starring role as you get older. Resist the temptation and let your other traits shine through. Remember that there are many other things that make you unique, and strive to share these things with the world.

3. You see serious illness in every ache and pain.

This flows naturally from number 2. I know I need to put this one delicately, and I remind you to see my disclaimer, above. Sometimes a mole hill really is a mountain and should be treated as such. But on the other hand, sometimes we are prone to make mountains out of mole hills.

In my own experience, sometimes a cold is just a cold and food poisoning is just food poisoning and these things have nothing to do with having a rare disease. Remember, each person is unique and you know when you need to be concerned. Just remind yourself not to worry too much when you're feeling a little under the weather.

4. You constantly compare yourself to others within your disease community.

If you have a rare condition, you may find yourself knowing most of the people in your country with that condition. Kind of bizarre, right? I mean, imagine having cancer and saying, "I know 90% of the people in America who have cancer." Totally ridiculous. And yet, this is something I can say with a high degree of certainty when it comes to knowing people with cystinosis.

Since your community is small, the temptation is to believe that experiences are universal and by extension, quickly make comparisons when they are not. The healthy thing to do is to accept that there is a ton of health diversity even within a rare disease community, and you are responsible for creating a great life for yourself within your own circumstances. Embrace what you can do, and don't worry about what you can't, even if someone else can! Jealousy is a wasted emotion.

5. You don't share (or you overshare).

No one wants to be around someone who only talks about his or her health condition. At the same time, we all want to be around people who are real and flawed.

Until I was 18, I was adamant that no one at my school know about cystinosis. I stand by the fact that this worked for me, because I had a support network outside of school that did know (and also knew that I didn't want it to be a huge part of my life). At the same time, I became pretty withdrawn during the two years I spent on dialysis because I spent so many hours at the hospital rather than socializing. I know that some of my friends would have come with me to dialysis, but they didn't know. My best male friend during that time (who now happens to be my husband) didn't attend my school and did come to dialysis with me a few times. He was probably intensely curious about some things but he didn't ask, because I liked to focus on other things. He was a huge support.

Don't go through your rare, beautiful life alone. Share with those you trust. Keep a good balance between silence and oversharing when it comes to your condition.

6. You fast-forward to the end of your life.

Like it says in the blog post that inspired this one, too often we jump to the worst possible conclusion. Be realistic but not doomsday-ish. Your life can be long and happy; it can be short and happy. But what a tragedy if it is long and unhappy. It's no way to live--constantly thinking about life expectancy or failing organs or whatever else that shouldn't be dominating your thoughts in the here and now.

I like the story I have to share about a deferred transplant. When I was 16, my native kidneys failed and I needed a transplant. I went on dialysis instead. There were many things that went into this decision, for it was a conscious decision both on my parents' part and my part. I wanted to finish high school without a health interruption because I was so academically driven (priorities, right? ha). My parents felt that if transplant could be put off for a while, there may be medical advances that would increase the success of a new organ when I got it.

While on dialysis, I didn't lament my everyday (see number 1). I had extra homework time in a recliner that just happened to be at a hospital. I didn't think about the dreary future or how people die on dialysis. I focused on being in my best health and enjoying what I enjoyed. I appreciated that machine that gave me life, and though the seemingly endless surgeries were a pain, I always lived assuming that my current dialysis catheter would work. And when it didn't? Well, I took that news in stride.

Turns out my parents were right. Between when I started dialysis and when I had my transplant, new advancements were made in anti-rejection treatment. A medication that had been the norm in 1997 was on its way out in 1999, with a newly FDA approved treatment introduced. I was on the old medication for a month when doctors realized it was toxic to me. If this had happened in 1997, I'm not sure what would have been done. But in 1999, I was promptly switched to the better medication which has proved a resounding success.

So live your life and don't let your mind travel to Doomsday. You just never know what's over the horizon rushing toward you as quickly as the earth spins and revolves (and evolves) into Tomorrow.

7. You cling to your safety net and accept what you believe to be your fate.

Take risks and do things believed to be impossible for you. You'll be surprised where you land when you jump.


The Birthmark

Yet, had Aylmer reached a profounder wisdom, he need not thus have flung away the happiness which would have woven his mortal life of the selfsame texture with the celestial. The momentary circumstance was too strong for him; he failed to look beyond the shadowy scope of time, and, living once for all in eternity, to find the perfect future in the present. Nathaniel Hawthorne, “The Birthmark”

Poor Nathaniel Hawthorne--The Scarlet Letter is pretty much a scarlet letter on his career. We hear “Hawthorne” and we typically think only of this piece of his canon; too often, this very prominent mark on his name is the only one discussed in high school courses.

This is unfortunate, because Hawthorne produced some pretty great work during his six decades of life. One of his short stories and the inspiration for this post is “The Birthmark.”

In the story, a scientist (or perhaps more accurately, a pseudoscientist or an alchemist), Aylmer, falls in love with a woman who is incredibly beautiful. Georgiana is perfect in every way save one: she has a small birthmark, shaped like a tiny hand, on her cheek.

This birthmark is of little consequence to Georgiana’s many male admirers and suitors; in fact, it is “often called a charm” and is said to be the mark of a fairy who “at [Georgiana’s] birth hour had laid her tiny hand upon the infant’s cheek, and left this impress there in token of the magic endowments that were to give her such sway over all hearts.”

When Aylmer and Georgiana wed, all seems initially fine. But over time, the birthmark slowly becomes all that Aylmer can see in his spouse. And because of his disgust, it becomes all Georgiana can see of herself, too. And as the story continues, this seemingly skin-deep flaw gradually comes to be called the “fatal birthmark” by both of them.

Georgiana begins to believe that only the removal of the birthmark will restore joy to her life.

“Again: do we know that there is a possibility, on any terms, of unclasping the firm gripe of this little hand which was laid upon me before I came into the world?”

“Dearest Georgiana, I have spent much thought upon the subject,” hastily interrupted Aylmer. “I am convinced of the perfect practicability of its removal.”

And so, she agrees to allow her husband to remove the hated birthmark in his lab. She understands that the procedure may be dangerous, but she has become so convinced that life is miserable that she is willing to risk anything in order to remove the blemish.

Several treatments come up short. In a final attempt to remove the birthmark, Georgiana drinks a potion prepared by her husband. She falls into a deep sleep and as Aylmer watches with delight, the birthmark begins to fade. Georgiana awakes and looks in the mirror to see the final stages of its removal, but she tells her husband that she is dying at the rate the birthmark is fading: the treatment has been as fatal as the birthmark was perceived to be. In the end, the birthmark is gone--but so is Georgiana.

Wow. What a brilliant story, right? Especially when you analyze its deeper meaning. Which I'm totally not going to do, except with a few words...

A rare and incurable disease is not the same thing as a superficial birthmark, but then again, even Hawthorne wasn't really writing about a superficial birthmark. In this great piece of allegory, the birthmark represents the imperfections that make us human. Rob us of our imperfections, and we lose our humanity, much like Georgiana sacrificed her life in an effort to rid herself of something that she had ironically deemed "fatal."

But I'm going to deviate from Hawthorne's deep meaning and be slightly more literal. Hawthorne was, after all, a transcendentalist thinker, and transcendentalism is just a tad too esoteric for my simple mind.

What I'm getting at here isn't that we shouldn't seek cures for rare diseases. In fact, I hope and pray every day that a cure for cystinosis is found in my lifetime. I believe it will happen, and even if this cure isn't available to me, I know I will be around to see diagnosed members of the younger generation live without the disease.

What I'm actually getting at is that we can't allow a disease or condition to overtake our lives and become all we see. While raising funds for better treatments and a cure, we have to be careful that we are keeping a beautiful reality in check: disease is actually a small part of our identity that shouldn't define us and certainly shouldn't make us metaphorically uglier or fatally flawed. While living in denial won't work (there are medicines to take and appointments to keep in order for someone with a medical condition to stay healthy), it is important to realize that if you allow any part of yourself to become a negative focus in your life, it could soon become all that you see. While having a cure as your priority certainly isn't bad in and of itself, to think that your life is terrible right now without one--as Georgiana did in this tragic tale--can lead to a pretty miserable existence.

Trifling as it at first appeared, it so connected itself with innumerable trains of thought and modes of feeling that it became the central point of all.

Likewise (and this extends beyond medical conditions), becoming razor-focused on someone else's allegorical "birthmark" (even if you think you are helping them) can lead to unhealthy thinking on their part--this is the whole reason why bullying is such a serious issue.

Until now he had not been aware of the tyrannizing influence acquired by one idea over his mind, and of the lengths which he might find in his heart to go for the sake of giving himself peace.

How we think about ourselves AND our flaws absolutely matters. Where we place our thoughts, there we place our lives. May life be rooted in joy (which is different than happiness and certainly allows for sadness) no matter the circumstances.

Kintsukuroi (Or, A Good Reason To Talk About Rare Disease Day)

Why talk about having a rare disease? Should it be done for advocacy, to raise awareness, to garner funds, or to simply highlight the beauty in our diversity? Of all of these, perhaps the last one is the least mentioned. This post is in honor of Rare Disease Day, a day on which we celebrate by highlighting that which makes us completely (or perfectly - read on for the significance of these two words) unique.

There is a Japanese art form, known as Kintsugi or Kintsukuroi, that involves repairing cracked and broken pottery with materials that are mixed with gold. (Chances are you might hear more of this, since Death Cab for Cutie has just announced that Kintsugi will be the name of the band's upcoming album.)

We in the West generally try to minimize the appearance of damage (think Bob Ross: “We don’t make mistakes; we have happy accidents”).

Make them birds

From the day we first use Elmer’s Disappearing Purple Glue Stick in preschool, we learn that imperfections (in our sense of the word) are to be masked. We may slather them on purple but we want them to dry clear. As if they never were.

Disappearing Purple Ink

On the other hand, the Japanese almost seem to highlight the brokenness of two things brought together in an act of repair. Rather than damaged, the object is seen as showing a more complete story, with no event in its history masked or hidden. In the West, we often seek out unsullied objects for our collections: that unopened, factory-sealed doll; that mint-condition World War II-era gun that has never been shot; that boxed Commodore 64 complete with all its parts.

But “kintsukuroi” translates as “golden repair,” a two-word pairing that may seem almost paradoxical to our Western minds. If something needs repair, isn’t it by its very nature broken and worth less (not necessarily, though sometimes, worthless as well)?

It is, and then it isn’t. It is broken, but then it is mended, with its brokenness highlighted, celebrated. Its flaws become beautiful storytelling features, communicating with shimmering gold that life happened here. In Japan, far from being worth less, an object that has been repaired using the kintsugi method is sometimes even worth more than the flawless version.

Kintsugi Method

Can something that is broken truly be golden? Yes. I believe the rare disease life is an important example of this. Our bodies are broken, mended with surgeries and medications, and then broken some more; but with many invisible conditions, our flaws can be hidden from sight if we so choose.

Yet should we choose otherwise, our individual stories of living with a rare condition provide us an opportunity to share some of the cracks and blemishes that make our autobiographies remarkable.

But how do we go about sharing these flaws? Do we share them as battle scars, wounds that create a negative impact in our everyday, excuses for us to live bitter, cracks in the pottery? Or do we share them as elements that add value, humanity, and gold to our lives?

Perhaps a piece of pottery that has never cracked or broken (or shows no evidence of this) belongs on the shelf for everyone to ooh and aah over, much like a model in a magazine. Maybe we don’t examine it closely enough to discover that it is really a photoshopped facade. But if life is for the living, I’d rather be pieced back together over and over, each time with gold that brings more attention to the ever-growing number of flaws that represent mistakes made, lessons learned, and grace offered.

The word “perfect” comes from a Latin word that means accomplished, finished, or complete. Applying an air brush effect to a model doesn’t complete her. It creates a new, unnatural, flawless but nonexistent creature. She is only complete with the full effect of her humanity present.

Our flaws can be made beautiful, but we do have to be careful about how we wear them. They should add beauty to our lives and should never be masked or hidden - or unduly lamented. They are not to be deprecated or assist in the victimization of ourselves. They are part of our story, part of our shining history. Our story is incomplete - and therefore imperfect - until all our flaws are stitched into the fabric of our lives with golden thread.

Share what makes you rare. Share your flaws.

My own kintsugi, highlighting my kidney transplant scar.

On Rhetoric

Many people know of my questioning of the status quo of disease rhetoric. Probably these same people all roll their eyes when they sense another rhetoric post coming. I continue to challenge the words we choose for ourselves and for others because words, beautifully crafted or unintentionally regurgitated, matter. Changing words are often either the first step or the first sign of changing attitudes.

This week in one of the Facebook groups I am a part of, someone posted a story about a man diagnosed with stage 4 cancer who chose to hike from Mexico to Canada on the Pacific Crest Trail. The story itself was a beautiful tear jerker that ended with his death - a death that he knew was coming regardless of what he did with his time left.

What really moved me, however, were the comments on the post. You see, this was not posted in a "support group" - it was posted in a closed group devoted to long-distance hiking. Therefore, some of the comments by those with unique health situations were obviously made without much premeditation, uncensored for a crowd that obviously shouldn't take any comments about illness personally.

One of the commenters, a woman who could directly relate to the man featured in the story because of her own long-term cancer diagnosis, said, "Choosing to live a normal life was the key to my survival. I didn't go to support groups - they sat around whining about their conditions. I didn't want to immerse myself in what I call the 'cancer culture.' I just wanted to live a normal life. And I have, for 35 years since my diagnosis."

This comment really got me thinking. Are support groups helpful? Ultimately, I think it depends on the person, and I have seen some people be completely lifted up by support groups. (The key word in such uplifting groups is, indeed, "support.") But a lot of times, these groups can turn into a sort of misery-loves-company kind of atmosphere, with people lamenting hardship (and these lamentations tend to be either contagious or competitive).

We dismiss those who keep themselves outside of these support groups, whispering words of judgment and throwing around phrases like "unhealthy denial."

It is a tricky balance. We need human interaction, support, and empathy directed our way. But to turn everything into a hardship is pretty dreary. Sometimes when I share, I internally recoil when others turn my experience into a hardship that I'm not, in fact, experiencing. What do I have to gain by seeing a learning experience as hardship?

I don't want to hurt anyone who relies on support groups for comfort. (Edit: or INFORMATION! I am entirely grateful for information I have learned through coming together with others.) It is very healthy to seek out support, and I am enormously grateful that such groups exist. I only want to gently encourage balance and perspective within these groups and also stress that what we see as "denial" may, in fact, not always be unhealthy. (Disclaimer: I don't consider "I don't really have an illness and therefore I don't need to take medicine" to be healthy denial. Realistic denial is understanding that when you are doing everything you can to stay healthy, you don't have to conform to someone's preconceived notions of who you should be.)

Something a friend and I were recently talking about was the use of the phrase "cystinosis patient" to refer to individuals with cystinosis. It's a tricky one, because people with cystinosis are generally followed by one or more physicians and have regular blood tests and medical appointments. On the other hand, so do lots of people who we don't refer to as "patients." My last overnight hospital stay was 15 and a half years ago, in August of 1999. My husband had a more recent overnight stay (also years ago), but I don't refer to him as a patient. Doctors and nurses did - while he was in the hospital. Is it helpful or damaging to automatically label people with cystinosis as patients? Does this phrase have a redundant eternal quality to it? (By that I mean, your cystinosis lasts a lifetime. Why suggest a lifetime of hospital stays as well?) Do we accept the patient mentality without questioning?

When you grow up with a rare disease, you are often exposed to your own exceptionalism. Sometimes I think the rhetoric reflects a desire to hold on to that, and we desperately apply it to entire communities in hopes that the suffering will stick, that people will notice our struggles and salute us. The truth is our communities are so varied, and while it has become (rightfully) wrong to apply universal stereotypes such as "black people can dance" and "Asians are good at math," it is still perfectly acceptable to say that "cystinosis patients suffer with ___________."

I will never deny you your suffering. That is yours to have, though I wish I could take it all away. But let's carefully consider how we apply words to an entire, albeit small, population.

I am hardly alone or original in these thoughts. For a great resource on people-first, positive language, see http://www.asha.org/publications/journals/submissions/person_first.htm. Notice that the first word listed under Principle Four is, in fact, patient.

Strengthening Trio

One of the side effects of cystinosis in adulthood can be muscle wasting. This is something that is so important to face head-on, and not just in the cystinosis community - the reality is that with age, muscle deterioration can affect almost anyone who isn’t diligent with a maintenance routine. This is just more true with cystinosis (often). The best defense against muscle wasting in cystinosis may be treating cystine buildup with a cystine-depleting medication such as Cystagon or Procysbi, but I don’t believe this is enough.

Here is a trio of products. As with anything, please check with your doctor if you plan on changing your regimen.

Strengthening Trio

Pulmonary Strength: Elevation Training Mask 2.0 This may sound extremely gimmicky, but according to a lot of people it isn’t - to many it is totally legitimate, used by professional athletes and coaches. The mask emulates high altitude conditions by creating pulmonary resistance and thereby forcing you to use available oxygen more efficiently.

There are two main muscle groups that assist with breathing, the diaphragm and external intercostal muscles. This mask seeks to strengthen these muscles, which also work with core muscles due to their positioning. (According the the Journal of Applied Physiology, for example, the diaphragm musculature can be thickened with sit-ups and bicep exercises.) So it stands to reason that if you forced the breathing muscles to work harder (by limiting oxygen) while also doing core muscle exercises, you'd get an extra benefit.

I'll be honest. The first time I put it on (set to 9,000 feet), I didn't feel like I was breathing at 9,000 feet (an elevation I am familiar with) - I felt like someone was suffocating me at 9,000 feet. I initially called it my "panic attack training tool" - how long can I calmly wear this thing before I rip it off due to hyperventilation in the face of ridiculous (and unfounded) fears regarding the fate of my life resting firmly in its grasp? But because it comes with different settings, you can easily start at a lower elevation and work your way up. And honestly, I got used to the 9,000-foot setting fairly quickly and feel comfortable doing exercise at that level (with plans to increase the resistance when I feel ready).

Grip Strength: DynaFlex Pro Gyro Powerball I first saw this hand strengthener being used by trainers at the rock climbing gym I frequent. It is designed to build wrist, grip, and forearm strength by way of a gyroscope mechanism that can spin up to 150,000 rotations per minute.

The concept is simple: keep the gyroscope moving by rotating your wrist while maintaining a firm grip on the ball at the same time. Simple concept, difficult exercise. Because my hands are fairly weak, I feel like the primary benefit to this product is its strengthening of my forearms to compensate. A lot of our grip strength is actually found in our forearms and upper arms.

Here's a short video of me using the product.

[video width="640" height="360" mp4="http://rollerskatingwithrickets.com/blog/wp-content/uploads/2015/01/powerball.mp4"][/video]


Overall Strength (via science or placebo): ZMA So here's the thing. I'm not sure I believe that this supplement does anything in terms of helping with muscle growth. Many claim it does, but (I hope) I am not that naive. At the same time, it includes zinc, magnesium, and vitamin B6, all found naturally in foods. I take two capsules at bedtime in hopes that it lives up to some of its performance-enhancing claims, but even if it doesn't, I'm okay with its contents. Note that women should take less than men.

Final Thoughts Different things will work for different people, and any sort of exercise enhancement that you don't use is a useless one, no matter how many people sing its praises. The most effective tools are the ones you will use. This is something I must daily remind myself of, especially in light of the fact that I believe that these products - especially the first two - can help, if only I stick with them.

Finally - and I hate to be a downer, but - it's important to remember that you cannot "spot strengthen" any isolated areas of your body. You really need to be working out your entire body in order to positively impact any one area. If gaining muscle were easy, there would be a pill for it and the media would be all over it. Sorry!

Have experience with any of these products? Drop me a line in the comments!


Lessons Learned from Hiking the John Muir Trail

This article first appeared in the Cystinosis Research Network’s Fall/Winter 2014 newsletter. I encourage you to check it out there, along with all the other wonderful articles. Cystinosis is the best thing that has ever happened to me.

I mean that not as a polarizing statement, but as a personal one. I have always enjoyed the gifts cystinosis has lavishly bestowed upon me—even those that come disguised as hardship.

It's a good thing that I feel this way, because cystinosis is written into my DNA. I can't just shake it off Taylor-Swift-style. It's good to avoid hating your DNA, because, well, you're kind of stuck with what you got. Literally. Unless you get those eye color-changing contact lens. Those are awesome.

But there is no denying that cystinosis can be destructive, and it has cost many people their lives. Too many. That is why the Cystinosis Research Network is so intent on raising funds, building awareness, and bringing families together for support. I am so grateful that such a community exists, and sometimes (OK, a lot of the time) I feel like I don't show that appreciation or give back enough in return. Maybe it's a zero-sum game: but I'm still trying.

My husband Wayne and I did a charity hike for CRN in September. This wasn't something that we planned far in advance; in fact, although hiking the 211-mile John Muir Trail (plus the combined 10 miles it takes to reach it and exit it) had been a dream of mine since I started hiking to combat pulmonary decline in early 2012, it wasn't something I thought we'd ever be able to schedule logistically.

99th Switchback

But a pretty crazy blessing happened in July: I lost my teaching job. The K-8 school where I started teaching in 2005 decided to close its doors to the upper grades and continue as just a K-5, leaving me to continue working at a job that I thought would be for the summer only.

My first thought—before I even stopped to feel sad about the loss—was that without the school year constraints, now I could make the John Muir Trail a reality in September! So I put in a request for two weeks off and Wayne and I got started planning.

We wanted to take the cystinosis community with us on this journey, in part because I only ever took up hiking and considered the John Muir Trail because of cystinosis. (Remember how thankful I am for this beautiful mess of a disease?) I wanted to have my heroes on my heart—so I literally put them on my bag, attaching buttons of individuals with cystinosis to my pack. We dedicated each mile hiked to an individual based on a sponsorship price of $20 per mile. Although not every mile of the trail was sponsored, we raised almost $3000 for cystinosis research and had many miles covered.

Many people we encountered on the trail asked about my pack. It was nice to be able to share about cystinosis.

There were truly moments when I didn’t want to continue. There was even a time when I had to come off the trail due to difficult circumstances and reenter after a few recovery days. I found it hard to eat and the cold almost unbearable. Most of the trail is above 10,000 feet and no section of it until near the end is flat—it is a constant up-and-down over mountain passes. We traveled south-to-north, starting with a hike to the top of Mt. Whitney (the highest point in the contiguous United States) and ending in Yosemite Valley (although a fire closed the final 12 miles of trail).

But those with cystinosis constantly motivated me. I kept aware of what mile we were on and knew who I was hiking for. A landmark would appear in the distance—Guitar Lake or Donahue Pass or Crabtree Meadow or Garnet Lake or any number of other places—and I would think about the individual whose mile it represented. Several hikers asked about the buttons on my pack, the most common question being, “Are those your kids?” (say what?! There were 40 buttons on that pack!), and it gave us a chance to describe cystinosis to a wide variety of strangers.

I wish I could share with you all the thoughts that went through my head as I thought fondly of those for whom each mile was dedicated, but those are not my stories to tell. Needless to say, from those who are on dialysis to those who have recently received kidney transplants and one sweet individual who recently passed away, each and every person inspired me.

Here are some things the John Muir Trail taught me about life, love, and cystinosis:

  1. It won’t be like walking on the moon.

One morning we crossed paths with a solo hiker headed the opposite direction and let him know we were headed toward Donahue Pass at 11,000 feet. We were around 9,500 feet at the time.

“Oh my,” he said. “You have a long way uphill.” He must have seen the melancholy written all over my face for he quickly added, “But it’s like walking on the moon. It’s beautiful up there. Otherworldly.”

Six hours later, I struggled to experience the moon walk. My pack was still heavy. My body was not weightless. Gravity still tugged at my every muscle, silently pleading, “Sit down.”

Weighing our packs at the Mt. Whitney trailhead. With all our food, camping equipment, and other necessities, W’s pack weighed 55 pounds and mine weighed 38.

But there is a force greater than gravity, a voice louder than Isaac Newton’s, and that is the voice that says, “Here you are, weight at all.”

The cystinosis life is not weightless. You cannot put down your heavy pack. But you should carry it. You must carry it. It’s not going anywhere unless you do. And with a little practice, you can carry it with joy.

The trail was rocky and almost constant up and down, but to wake up to the scenery every morning was incredible.

The alternative is to look at your heavy pack, plop yourself down on the couch and refuse to move, and complain about how heavy the pack sitting beside you is... and explain to others how it gives you a reason not to move.

  1. You’re always almost somewhere.

Another day, we passed a hiker who heartily patted me on the shoulder as he headed was down and we were headed up. “You’re almost there,” he said.

Almost where? I wondered. The audacity of this guy, assuming he knows my journey!

But we are always almost somewhere. Maybe it’s not always close to where we think our destination is, but we are always near the next landmark of our lives. We become so laser-focused on an important end goal (say, a cure) that we forget that our journeys are varied and complex, brimming with life, and worth experiencing 110%.

  1. The right way is usually the up way.

Whenever the trail forked, I knew our path was the one that went up. And lo and behold, that was also the path that led to the sweeping mountain passes and overlooks.

Thousand Island Lake

I hope the sting of this quote is lessened by the fact that I started hiking due to an unfortunate pulmonary diagnosis that I’ve since managed to turn around. John Muir said, “Few places in this world are more dangerous than home. Fear not, therefore, to try the mountain passes. They will kill care, save you from deadly apathy, set you free, and call forth every faculty into vigorous, enthusiastic action. Even the sick should try these so-called dangerous passes, because for every unfortunate they kill, they cure a thousand.”

  1. The toughest days are not necessarily the ones with the steepest paths.

One of the days I most dreaded while preparing for the JMT was Day 2. This day included the summit of the highest mountain in the Lower 48, which necessitated a 99-switchback, 2000-foot climb first thing in the morning.

I built this challenge up in my mind, but in the end, it wasn’t the one that took me down. It was the steepest path I had to walk, but I was also ready and on my guard.

It was Day 3, a day I had predetermined as “easy,” that I really struggled. An unexpected storm brought freezing cold and treacherous lightning. The altitude I had quickly attained robbed me of my appetite. And a single mile dragged on for hours.

We encountered a lightning storm and a couple of overnight freezes.

We don’t often anticipate the tough (unless you anticipate every day to be an upcoming battle—which, to be honest, I don’t recommend).

  1. If you did it yesterday, you can do it today. If you do it today, you can do it tomorrow. Kind of.

Obviously, this argument is fundamentally flawed; if it were true, we could live forever. But the idea behind this one is that you need to keep going, being ever diligent (while not seeing it as survival or a battle or work) as you live this life. Building off #4, you have to take care of yourself in order to continue on the trail day after day.

Johnson Meadows, one of the locations where we expected to find water to filter but instead discovered more of a stagnant puddle.

  1. Hike your own hike.

This is a popular mantra among hikers, backpackers, and peak baggers. In a nutshell, there is a lot of advice out there as to how to complete a thru-hike like the John Muir Trail. But it may not all fit your unique circumstances. Similarly with cystinosis—make your experience your own while never refusing to accept or give supportive words to others who may be experiencing things quite differently.

  1. Love the one you’re with.

This is your life. You can’t trade it. Love it for all it contains. This is a lesson that I learned (or rather, realized again) before I even hit the trail. We aren’t given many years on this planet, and losing a job reminded me of how much stuff there is to do in not-so-much time. How fortunate to be able to explore one more thing because of a circumstance others may see as unfavorable. How can I view cystinosis as unfavorable when it has propelled me to these adventures that afford me such tremendous views of creation?

On a more personal side, my love for Wayne only grew during the challenges of this experience. Not only did he carry our communal gear, but he also set up the tent each night and cooked the food. He was and is a huge support in everything, and I couldn’t be more grateful. He has humored me up Mt. Kilimanjaro in Africa, motivated me on the John Muir Trail, and encouraged me to challenge what it means to have cystinosis.

My partner in life and love.

We are all hiking a life trail every single day. There are mountains to summit and valleys to cross. I hope that the trail is smooth and glorious for every single one of you in the cystinosis community. But if that’s not possible, I hope it’s challenging and glorious.

“In this life we are all just walking up the mountain and we can sing as we climb or we can complain about our sore feet. Whichever we choose, we still gotta do the hike. I decided a long time ago singing made a lot more sense.” –Unknown

We Are Imperfect

As many of our friends and family know, W and I have made the decision to adopt. I can’t put my finger on when we first made this decision; W and both of his brothers were adopted, so obviously the thought has never been a foreign one to us. But I think it was when W’s parents died and we met his biological mother for the first time that I realized that adoption is something that can truly be a “twice blessed” scenario: we were blessed once with W’s family, and once again when his genetic family entered into our lives. I have mixed feelings about the adoption process itself. I’ve self-censored a lot of my thoughts due to the fear of being Googled by women considering us as possible parents, and as a result I’ve remained mostly silent. But I've noticed this silence on the part of other adopting couples, too. The home study, the profile, the wait, the personal feelings of inadequacy... no one seems eager to share much about the process until it's over. And truth be told, a lot of people who have not adopted or are not in the process of adopting make quite a few assumptions about their adopting friends. And maybe it's not benefitting the larger adopting community.

So here it is: we are imperfect. Incredibly, deeply imperfect. I have a genetic disease that many would like to label as life-limiting, and though I do live without limits (and we would not have passed our home study if my good health were not a provable fact), any child of mine is going to see his or her mama taking medicine. It’s never going to be a spectacle or show, but it’s going to be there. But more importantly, because of this small second-nature act on my part, I’m going to be there, too. (And according to my doctors, I’m going to be there for a very, very long time.)

But aside from this elephant, our imperfections extend even further, from our apartment lifestyle (we don’t have the huge house and big yard found in may couples’ profiles) to our somewhat camera-shy personalities (oh, how inadequate I felt when our adoption facilitator said we needed four more pages of photos in our profile!). We are not self-promoters and can only say whole heartedly and with complete integrity that what we do have to offer our children is love.

I’ve come to the conclusion that we cannot be afraid to hide our imperfections, while at the same time acknowledging that we must be careful about oversharing on the Internet, just as we would teach our children. As Jolie O’Dell so appropriately states, “…if you’re writing a story about yourself, well, just remember, the internet’s memory is long. Even if you delete your post, it’s guaranteed to be cached or archived on some server somewhere. So carefully consider how personal you want your personal stories to be.”


I’d love to hear your experiences if you’ve been down this adoption road, carrying all of your imperfections with you. I’ll be honest and say that some elements of it seem so fake-candy-shell-colored pink, from the shiny profile booklet we had a graphic designer put together to the smiles we put on our faces when we are asked incredibly personal questions by a social worker conducting our now-thankfully-over home study. How have you let your authentic love take the lead in what can start to feel like an inauthentic process?

Look for at least one more future post on this process, but for now, this is what is on my heart.