Living Well With Cystinosis: Shouldering New Challenges

I ask not for a lighter burden, but for broader shoulders.
— Jewish Proverb

Something you might not realize if you haven't hiked or snowshoed in late spring/summer snow is that it can be terribly hot. Obviously, the snow itself is cold, but vast quantities of snow cover provide the perfect reflective surface for the sun. On a cloudless day, the sun not only beats down on you from above but also bounces off the snow and hits you from below.


I experienced a perfect storm of difficult conditions during a mid-June hike: hot sun, large expanses of soft snow (which requires lifting the feet higher to walk through), high elevation (nearly 10,000 feet), and an uphill grade. I also carried a pack with my DSLR and a large, clunky, wide-angle lens. That's pretty much all my pack had in it.

But let me back up for a second.

Almost a year ago, I hiked for 22 hours straight with a light pack on my back. But for the next three months, I had significant shoulder, neck, and upper back pain and was unable to bear much weight. However, something worth noting is that at no point during the hike itself did I feel like my pack was a burden.

During this past weekend's hike, things were different. I felt shoulder and upper back pain and weakness throughout the hike.

That's really the word I'd use to describe what I felt: weakness.

At one point I raised my hands over my head and reached for a tree branch to stretch my shoulders thinking they just needed a little warm-up.

But that wasn't it. The shoulder weakness persisted, and despite the addition of the heat and the snow and the grade, I knew this was not my normal.

The shoulders are a known problem area for people with cystinosis. What this trek made evident is that I need to work on this area in particular.

So I've been looking at some exercises and am planning to increase my rock climbing activities.

Life is a marathon, never a sprint. I am grateful for the changes that remind me to keep training against beautiful backdrops that I'd otherwise never experience. I was destined to be a couch potato, y'all — cystinosis turned me into an athlete.


Hello, May

Hello, May.

Hello, flowers that April showers have promised us.

A little bit of floral sunshine.

Hello to a season of patience and waiting — kids are anticipating the end of school, families are anticipating family vacations, and we're all anticipating unbroken sunshine for days.

And me? In this season of anticipating what's to come, I'm trying to patiently await resolution. April had showers. Oh, so many showers. Showers that watered my soul to be certain. And showers that also drowned a dream.

And at the end of the day, a watered soul is so much more important than a drowned dream. Immeasurably more important. And something I've long asked for. I'm endlessly grateful for April.

So I'm reminding myself that May and June are my favorite months (due to the length of the days and temperatures that are warm, but not sweltering), and that the flowers will bloom.

California poppies never cease to captivate me.

California poppies never cease to captivate me.

Why This May Just Be The Best Pill Organizer Ever

Let me start by saying that I'm not much of the pill organizer type.

I don't tend to forget to take medication—it's routine. I've downloaded trendy pill reminder apps with beautiful graphics, but I've always ended up abandoning them, because they aren't needed and end up just being another phone notification to dismiss. And when it comes to pill organizers, they tend to feel like a waste of time; I'm supposed to transfer my pills from their prescription containers to another container before taking? Why the extra step?

But this Walgreens-brand pill organizer makes sense for my lifestyle. Let me share with you some of the features that convinced me that an extra step can be worthwhile.

1. It fits 124 doses of medication.

Each removable day contains four roomy compartments: morning (breakfast), noon (lunch), evening (supper), and night (bedtime). The whole organizer allows you to portion out a month's worth of medicine.

2. It's a calendar.

As you complete each day, you can flip the individual organizer to indicate that the day is through. It's like having an old-school calendar and crossing off the days, and it's as satisfying as checking off items on a to-do list.

3. It travels well.

This one is so important to me. As someone who frequently takes day trips to the mountains or overnight backpacking trips, I need something convenient for travel. Also, I typically remove my daily doses from their bottles to travel anyway in order to have less bulk to pack. With this system, I can grab the individual organizers corresponding to the days of my travel (and an extra day or two in case of road closures or other delays in returning) and be on my way.

One word of caution

Medications that come in opaque bottles and have short expiration dates (less than a year) should probably be kept out of long-term organizers such as this one. I would not want to put a sun-sensitive medication in a clear compartment for so many days. For medicines like that, I recommend keeping them in their original bottle. 


Every Burden Is A Blessing

"When you saw the return address on the envelope, you probably didn't even want to open it."

This is how the judge welcomed us—75 people (including myself) who had entered the room silently a few minutes earlier—into his courtroom. He told us that he understood, that even he was called for jury duty on occasion, and that he had waited in that exact waiting room, had sat in this very courtroom.

In actuality, I didn't really dread opening the letter from the Superior Court. I figured I'd call the number given on my juror form the night before and learn via the automated system that I didn't need to come in. At worst, I thought maybe I'd have to appear in person to wait for several hours to be dismissed—but at least there would be free WiFi.

I waited several hours all right (and there was free WiFi), but the dismissal never came. Much to my horror, my name was called to report to Courtroom 17.

I won't bore you with the details. Suffice to say, it's a long trial (estimated to last until February 10th) and I think the lawyers and judge are working on putting together a jury all week. This is good news, because as the pool gets larger my odds will get slimmer—but for now, I'm still being considered a potential juror. Of the 75 people who entered Courtroom 17 after hearing their names, only about 20 (myself included) ended up admitting that they didn't have a hardship significant enough to prevent them from serving. Twenty of us. And 16 will be selected for the jury. You'd better believe I'm hoping the pool gets larger over the next few days before I have to report back to Courtroom 17 on Monday!

I came home after turning in my juror questionnaire somewhat bitter. I decided to get some laundry done while working remotely for the rest of the day. I lamented how much laundry there was to do. How can two people go through so many clothes so quickly?

Making a place for myself at the dining room table to work, I noticed the fortune cookie and decided its taste would match how I felt (mediocre at best), so why not? I found this gem:

Every burden is a blessing. 

Gulp. This rings true.

While in Courtroom 17, I found incredible inspiration from a story the judge told to motivate us. He and his wife are international travelers, and in their travels, he always tries to check out the local court system. He shared that it never ceases to amaze him how few countries have trial by jury.

"Even in countries where you might expect otherwise," he said, "you'll often find that an appointed official is making decisions related to guilt, innocence, and punishment. I'm grateful I don't have that power, because if I ever got into trouble, I'd sure want to know that a jury of my peers would be hearing me out."

He made me feel proud to be an American, proud to be under the Constitution, proud that our Bill of Rights guarantees our right to a trial by jury. When he announced the expected duration of the trial at hand, all this pride slipped away into lamentation. The fortune cookie shook me back to my senses.

What a blessing it is to live in this country and have such rights. My burden is not only someone else's blessing, it is actually my own as well. It is all of ours. At a time when it is popular to criticize our country right and left, I am proud to be an American.

And the endless stream of laundry I complain about? How incredibly selfish. How incredibly blessed we are that we have enough clothes to go more than a day (or even several) without needing to wash.

I think perhaps the fortune is meant to be read differently than this; the way it reads, it may actually be saying that burdens make us stronger, and in that sense, bless us. I get that. That's true, too. But today I'm humbled by the things I have no right to find burdensome—the things that are blessings first and foremost.


#rarediseasejournalingchallenge Day 15

"Great books help you understand, and they help you feel understood." (John Green)

What books have inspired you on your journey? Encouraged you? Helped you cope?

Make a list of 10, go in depth about 1, or do anything in between.

#rarediseasejournalingchallenge Day 13

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

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

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

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

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

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

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

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

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

He didn’t care.

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

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

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

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

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

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

Wayne: Is there a VCR?

Me: I think so.

Wayne: Have you ever seen Romancing the Stone?

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

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

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

And yet.

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

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

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

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

#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.