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

Answers?

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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.”

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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.

Choosing A Health Insurance Plan When You Have A Rare Condition

People with pre-existing conditions are finding themselves with more options (and more affordable options) since the implementation of the Affordable Care Act, so I thought I'd offer my take on what to look for when choosing an insurance plan.

1) Accept that you're going to pay more upfront. Many insurance providers offer different levels of coverage, using language such as "silver, gold, or platinum" or "basic or enhanced." The way these typically work is that at the lowest level, you pay a lot less per month (your monthly premium) but pay more per appointment, prescription, test, or procedure; these are typically great plans for people who don't expect to have many medical issues in a given year. At the highest level, your monthly premium is higher but your co-pays are lower. If you have a chronic medical condition (notice I didn't say "illness" - I feel that being "chronically ill" is different than having a chronic medical condition), you're probably better off going with a higher-level plan. Although I haven't had any hospital stays for more than a decade and am on relatively few medications, I still go for the highest level that is financially feasible for me. In the long run, it should save you money, especially if something happens. The difference between a procedure being covered at 80% and it being covered at 90% could be thousands of dollars.

2) If you have a preferred doctor, call him/her first to see not only if the office accepts the plan(s) you are considering, but also if the office has a preferred provider. For example, my doctor's office has previously stated that "so-and-so insurance" is a nightmare to work with. If the insurance company doesn't treat your doctor's office well, do you think that company will do any better when it comes to you? Remember that this can vary by region, so just because your cousin's best friend's sister-in-law's neighbor had a great experience with Insurance Company X doesn't mean you will.

3) Check the insurance company's prescription drug formulary to see if your medications are on it. (Be aware that your insurance company might use a pharmacy benefit management (PBM) system such as Express Scripts.) Familiarize yourself with what the different tiers mean and what tier each of your prescriptions is on. Use this information to estimate your co-pays. Medications without comparable generics will typically be of a higher tier and therefore cost a higher co-pay regardless of the plan you choose; however, you may find that if you are on a rare drug, it does not even appear on some formularies. If you are dead set on getting a plan without a necessary medication on the formulary, call before signing up and ask how such a situation is typically handled and what the common work-arounds are.

These are my top three tips, but I'm sure there are more out there! Comment below if you have a strategy for choosing an insurance plan that has worked for you.

How To Choose A New Doctor When You Have A Rare Condition

It's that time of year - open enrollment! If you're like me, change can be a little bit nerve-wracking. But if you are an advocate for yourself and your current health plan has not been meeting your needs, now is the time to take the plunge and make that change. So how do you go about choosing a new primary care physician (PCP) if your current doctor is not in your new plan's network? I wrote this a while back when working on a transition project with a nonprofit patient group but the guidelines are applicable any time you make a change.

Here are some things to consider when looking at doctor profiles:

  • In what area is he/she Board certified? (Please make sure he/she IS Board certified!) Because Internal Medicine is a more comprehensive certification than Family Practice, I generally go with an Internist. If you opt for a PPO rather than an HMO, you may be able to select a specialist, but I still like having one doctor who can serve as a central person for any issue, even if that means referring me out because the issue is beyond his or her expertise.
  • Does he/she have special certifications in addition to Internal Medicine? I look for a person with additional certification in endocrinology. Although the doctor will still be an Internist and not an endocrinologist, this means he/she probably has special interest in metabolic conditions.
  • Where did he/she attend medical school and complete his/her residency? Be on the lookout for doctors who have attended or worked at some of the top medical schools and hospitals in the country. U.S. News & World Report has listings for both top medical schools and the best hospitals.
  • How many years has he/she been practicing medicine? I occasionally go with newbies, because I feel that their enthusiasm for the field might be an asset. But usually, the more experience, the better.
  • Read carefully between the lines of an online bio to see what his/her strengths are. Look for lines like "enjoys problem solving challenging medical situations." (I've seen such a line.)
  • Go to www.vitals.com (or a similar site, preferably health specific and not yelp) and do a search for each person on the narrowed-down list of physicians that you are considering. Look for reviews from people with complicated cases. If there are negative reviews, read them and try to determine what makes them negative - I will usually forgive a negative review that seems solely based on the receptionist's bad attitude, but if a negative review mentions the doctor's lackadaisical demeanor, he doesn't make the cut. As with any reviews, be wary of reviewers who seem more interested in selling someone else rather than giving an honest appraisal of the doctor you are interested in.
  • Has the doctor ever seen another patient with your condition? Admittedly, this is not likely to be in his/her profile if your condition is rare. But it never hurts to place a call or shoot an email to the doctor's office asking (before making the selection) if he/she knows anything about your condition or is even interested in seriously taking on a patient with it. The response might be very telling.

Most of all, remember that you are in control. If you find that the doctor you selected is not meeting your needs, let your insurance plan know that you'd like to change.

Throwback Thursday: As It Was, 8 Minutes 20 Seconds Ago

I started a new job a couple weeks ago, and as usually happens shortly after you become accustomed to a new route, I'm on "unreliable automatic" when it comes to my commute: comfortable enough that I don't have to concentrate heavily on where and which way to turn, but unpracticed enough that it's dangerous for me to entirely zone out. This morning, zone out I did. I've had a lot on my mind lately. The open road and the promise of a commute that's routinely over an hour gave me perfect motivation to focus on my worries, not on my direction.

And then the beauty of the sun in the sky overtook my worries and left me agape, mesmerized, uplifted.

I love the long days of summer. I wake with the morning's first light, and 5:00 a.m. in late June is my favorite time of day. I love that the sun is high in the sky by mid-morning and remains high in the sky until long after the work day is done.

As the sun captured my full attention, I rushed to take a picture. (I'm not proud to admit this. Do as I say, not as I do: Don't pull out your camera phone while driving.)

The clouds. The landscape. The sun shining through it all.

Sometimes I just feel so blessed to be here. And by "here," I mean Earth. What an amazing planet and a fascinating galaxy in which we live.

There is only one problem.

I work 40 miles west of where I live.

Once it dawned on me (no pun intended) that seeing this gorgeous sun meant I was traveling east, I exited the freeway and prepared to turn around. I realized that I would be late to work, as I was now an hour and a half away from my office with an extra traffic jam to endure on the way.

But I couldn't be mad or frustrated with myself. I received the tremendous gift of an incredible view this morning, a view I would have missed had I gone the right way and arrived at work on time.

I am slowly realizing that my outlook on life is pretty analogous. We make decisions or sometimes take certain paths out of sheer necessity, and these decisions and paths sometimes take us to places where we didn't think we'd be. I'm not going to tell you that bad decisions don't have bad consequences or that every path is lined with purple perennial blossoms. But in everything, there is something good. Whether you look this way or that way, whether life forcibly pulls you one way or the other - in every direction, all around us, there is good.

I believe it wholeheartedly.

I'm so glad for the wrong turn this morning and for seeing the sun as it was 8 minutes and 20 seconds before it reached my eyes.

Limiting Yourself in a Limitless World

I wrote a book and started a blog centered on cystinosis and then realized that the blog was near impossible to maintain because life is not centered on cystinosis. Out of necessity and in different seasons, different things can come to dominate our lives, and therefore, our thoughts. (Or is it our thoughts, and therefore, our lives?)

I'm still awaiting the cystinosis season - a time of cystinosis domination.

I've come to the conclusion that I may be waiting a very long time. I don't sweat rare disease profundity or regularly see things with cystinosis-colored glasses. (Like most people, my sweat is mainly made up of water, with a little salt and other minerals thrown in.)

This blog is about so much more than living with cystinosis. This is a blog about living life despite all its flaws - which I think the very name suggestions - and flaws are sometimes perfectly mundane.

There is a lot of mundane. While it's true that there is paradoxical living in each of our lives - something I highlight in RSWR - there is much more non-paradoxical living.

I will still take opportunities to combat labels and misconceptions; for so many reasons, this is an important part of this blog. Let's not be ruled by labels. Let's stop applauding the mundane as amazing in light of cystinosis and open ourselves up to the idea that maybe life is just amazing for all of us, period, and cystinosis doesn't give us something to prove. Maybe living with cystinosis at the age of 33 and having a job, a spouse, and a mountain climbing spirit isn't any more incredible than it is for the next person, because after all, life is equally flawed for all of us.

Equally flawed for all of us. Does that rock your world? Hurt you because your scars are larger? How do you know?

I've seen cystinosis labeled as terminal, whereas the preeminent cystinosis researcher in the country has evaluated my lifespan as 70+ years. That sounds like an average existence. Which is how I live most of the time.

Why limit yourself with a word? A label? A thought domination? A cystinosis season that goes on day in and day out?

Why limit yourself in a limitless world?

Life may be different but we have much in common.

I am excited about this blog and its future mundanities.

To removing labels,

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Trail Report: Black Butte

Heading north on I-5, just as Mt. Shasta comes into view, there is something that looks a bit like a massive pile of dirt in comparison.

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Turns out, this pile of dirt (which also happens to be a volcano that last erupted an estimated 10,000 years ago) has a trail that leads to its summit, from which you are awarded with fantastic views of both Mt. Shasta and Mt. Eddy. Mr. Petite Peaker and I chose this less-traveled hike for the tail end of our trip to the northeastern part of the state. (I'm doing circles around Mt. Shasta. Some day, I'll do the magnificent fourteener itself.)

This a short but steep trail, kept in the moderate range because it is only about 2.5 miles each way. For the first 1.5 miles or so, it will seem like you are slowly winding your way around the mountain, almost making an uphill spiral. Once Shasta is behind you, Eddy will come into view. Just as you start to wind back around, the trail turns steeply and becomes a series of switchbacks on the Shasta side of the mountain for the last mile or so. There are parts of this portion of the trail that could be called a class 2 rock scramble, though for the most part I'd label this hike "class 1 annoying." Make sure your ankles are strong and your footing is sure! (Also: avoid if you are an arachnophobe.)

One of the smoother parts of the trail, with a snow-covered Mt. Eddy in the background
(and a shorter peak on Black Butte)
At the summit, there is the foundation of what used to be a more complete fire lookout tower, long since airlifted away. The views are breathtaking, though the graffiti made me a bit sad. Leave only footprints, people. Leave only footprints.

Mt. Shasta
The final approach with Mr. Petite Peaker ahead of me
Yes, that's a 420 smiley face with a joint - we missed the memo

Trail Report: Mist Trail After A Snowstorm

A couple weeks ago Yosemite National Park announced that the Mist Trail had opened. With our current drought, this early opening wasn't too surprising - and I was thrilled! I could see via the webcams that both Half Dome and Clouds Rest still had snow on them, and I was eager to make my way to the top of one of these iconic landmarks and photograph the remnants of winter. (Yes, the John Muir Trail could have been an option earlier in the season, but nothing beats the scenery along the Mist.)

We planned our day hike and were set to go when the heavens opened up and dumped much-needed water and snow on the Bay Area and Yosemite. We opted to go anyway, but we had to alter our plan. For starters, rain and snow plus freezing temperatures meant that the Mist would be treacherous in the dark with potential ice-covered stone steps, so we had to scratch our plan to start from the trailhead before 5AM. We also didn't know what we would find higher up on the trail, so with the later leaving time and the unknown trail conditions, we had to resign ourselves to a plan to hike to the top of Vernal Fall, Nevada Fall, and ultimately into Little Yosemite Valley - but no Half Dome or Clouds Rest. I'm a weekend warrior and had to allow enough time at the end of our hike to drive home and get enough rest before work the next day.

Without the stress of needing to make it to the top of Half Dome or Clouds Rest, I found myself really enjoying this hike and taking time to stop and smell the roses - or, in this case, stop and enjoy the snow.

Along the only paved part of the trail, from trailhead to the Vernal Fall footbridge
Yosemite Fall from the bend in the trail
Oh my goodness. We left the trailhead around 7AM and were immediately greeted by an almost unfamiliar landscape, despite having done this trail more times than I care to count now. It is an entirely different experience after a snowstorm!

Mr. Petite Peaker crossing the Vernal Fall footbridge - and making fresh footprints!
Though the change of scenery was surprising, what was perhaps more so was the quiet. For our entire hike to the top of Vernal, we didn't run into a single hiker - completely unheard of for this trail! I'm not sure you could plan this time of solitude along the Mist Trail. Above Vernal we ran into a grand total of five backpackers before stopping for lunch in Little Yosemite Valley.

Vernal Fall makes its majestic appearance
The rising sun peeking through the trees at the top of Vernal
The steps up to the top of Vernal were a little icy but not any more slippery than they are when the waterfall is at its height. We made our way up and then continued along the Mist Trail to the top of Nevada.

Putting fresh footprints on the Nevada Fall footbridge and marveling at the back of a bright and snowy Half Dome showing us a sliver of its top
We seemed to be ascending with the sun! If you are familiar with how difficult some of those Nevada Fall steps are, you may think they seem even more difficult in the snow (and you'd be right).
Top of Nevada Fall
Sadly, after we lunched in Little Yosemite Valley, we opted to return via the John Muir Trail. This was a decision I knew we would have to make as we were ascending the tricky area to the top of Nevada, but goodness knows I still wanted to cry when Mr. Petite Peaker uttered those three words, "John Muir Trail." Though we plan on thru-hiking all 215 miles of it, I am not a fan of the JMT in this area. One blogger (I wish I remembered which one) likened taking the JMT instead of the Mist on the way down as "sacrificing your toes for the sake of your knees," which feels pretty accurate to me. 

That being said, the JMT was significantly easier on the toes since it was snow covered. And, there can be no question that the best views of Nevada Fall are from the JMT. 

Nevada Fall from the JMT
When we returned to the junction with the Mist, we found that rangers had closed down the Mist due to treacherous conditions. Also on our descent, we ran into many, many hikers on their way up the JMT to the top of either Vernal or Nevada, so we considered ourselves blessed to have left so early when the Mist was still open, the snow was still unmelted, and the trail was serenely devoid of other hikers.

We arrived at the junction to find our path up, the Mist Trail, closed - and the trees along it had totally shed their snow!
Right back where we started from: the Vernal Fall footbridge, some six hours after we started on this adventure, had replaced its snow with tourists
This was an amazing hike. I was reminded of the words of John Muir, who said that "In every walk with nature, one receives far more than he seeks." We planned this trip seeking to stand atop Clouds Rest; what we received instead was a blissful hike through familiar places made brand new to us. If ever you have the chance to hike through Yosemite after a snowstorm, don't pass it up!





10 Tips for Successfully Hiking Mt. Kilimanjaro

As one of the Seven Summits, Mt. Kilimanjaro is a very popular destination for mountain enthusiasts worldwide. It is the tallest mountain in Africa at 19,340 feet and the tallest free-standing mountain in the world. I was fortunate enough to be able to reach the summit recently. If you are preparing for the mountain, here are some tips, perhaps a few that are beyond those typically mentioned in guidebooks.

1. Know yourself. More specifically, know your weaknesses and prepare accordingly. Are your hands prone to getting cold? Then go ahead and invest in the warmest gloves available. Does the monotony of putting one foot in front of the other daily for 6-7 hours straight drive you mad? Then splurge on that solar charger so you can listen to music or audiobooks every day you're on the mountain. You'll be glad you did. This hike is tough enough without experiencing avoidable problems.

2. Flex those psychological muscles. You've probably been preparing your body physically for months, but it is nearly as important to prepare your mind. One think I would recommend is doing a six-hour hike starting at midnight. When Mr. Petite Peaker and I did this last year with Yosemite's Half Dome, I was shocked at how much more difficult it was. Obviously, the physical demands didn't change (aside from how the cooler temperatures impacted our bodies), but the mental challenge of just walking steadily up without seeing any of the scenery was enormous. Summit day on Kilimanjaro is torturous partially because of the darkness, but well worth it. Just be prepared.

3. Do your squats. There are no proper toilets on the mountain, and regardless of what route you take, you'll be on it a minimum of five days. If you take the Marangu route, you'll be using outhouses and holes in the ground and you'll be stepping through human feces in order to reach the place where you assume the squatting position. It is not a nice feeling to be stepping in feces and then feel your legs start to quiver in protest and threaten to give out on you. Be comfortable with the position and with using the great outdoors. (And my goodness, do try to aim!)

4. Water is oxygen. Well, not exactly. But drinking a lot of it can help prevent acute mountain sickness, or AMS. At the same time, you will most likely tire of it (and the flavor might be a bit strange). Bring drink mix packets to break up the monotony.

5. Don't hide your symptoms from your guides. They have done this trip dozens of times or more and they are truly experts. Many have been educated at a mountaineering school and all of them know the dangers of AMS, which can be life-threatening. Don't worry; they aren't going to force you to turn around if you have a small headache. It is in their best interest for you to make it. But let's be honest. People die on Kilimanjaro. Fortunately, it isn't often, but the day I summitted, a man died of heart failure trying to make the climb. Porters tried desperately to resuscitate him, to no avail. We saw another man being carried down on a stretcher and another one being carried by piggyback by a porter who was running as fast as he could down the mountain. These three events happened within a span of two days. This mountain is no joke. Take your symptoms seriously, tell your guides about them, and let the experts determine the degree of seriousness.

6. Define your own success. Reaching Uhuru may be your goal, but it isn't the only way to succeed. Reaching Horombo or Kibo is a fantastic accomplishment. Making it to Gilman's Point or Stella is a tremendous feat. And let me tell you something: As someone who is terrified of flying, my success story was written when I boarded a plane to Tanzania.

7. Know that the weather is unpredictable. Like most people who do the climb, I went during the dry season. Because the first vegetation zone you'll hike through is rainforest, I did have wet weather gear - but not enough. I wasn't expecting to get rained on in the moorland or trudge through mud in the alpine desert. I wasn't expecting a blizzard at the summit or a meter of snow to be dumped on Kibo. I got by fine without gaiters but could have used some additional socks and another pair of waterproof (not water resistant!) rain pants. My Ahnu snow boots worked well for the entire hike, and because they are taller than traditional hiking boots, my legs were better protected.

8. Protect your body's largest organ: your skin. The equatorial sun can burn you badly, and though it probably goes without saying, it doesn't matter whether it's cloudy or not. And as you ascend and the atmosphere thins, there's nothing to protect you from the worst sunburn of your life if you didn't self-protect by slathering on the SPFs. Likewise, if it is windy and cold at the summit, you will get a nasty windburn. (Ask me how I know.) A balaclava to protect your face while traveling through the snow is a must.

9. Pole, pole: Never hurry on Kilimanjaro. You'll probably hear the command "pole, pole" ("slowly, slowly") from your guide incessantly. It will probably be an easy command to follow at high elevations (when I heard this said to me during the final summit push I merely gasped, "Oh, don't worry!"), but you need to apply this mantra at lower elevations and on flatter areas as well. If you tire yourself out before the hard stuff, you'll lessen your chances of making it to the top.

10. Don't go from airport to trailhead. Most packages allow you the option of adding a safari either before or after your climb. I highly recommend doing this, and doing it upon arrival and before your climb. While you could be adventurous and do a camping safari (sleeping near ravenous lions! go you!), the rest and relaxation that a driving safari offers is a good way to recuperate from a long flight (24 hours in my case) and see more of Tanzania. Remember: Tanzania is more than a mountain. It is a beautiful country with many tribes and languages and cultures. Re-train your Western eyes to avoid judging "pastoral" as "impoverished." A French priest who sat next to me on the plane to Amsterdam (yes, God has a sense of humor) told me that loneliness is the greatest poverty of all. The Tanzanian people are (at least the ones I encountered) warm, welcoming, and persistently in the company of others. Don't insult the culture by seeing the mountain and not the people. Take time to enjoy the people before trekking up a pile of earth.

Trail Report: Mt. Eddy

We are definitely in the midst of the hiking off-season, when high-elevation treks are generally impossible without ice axes and crampons. Since we have also had a very dry run in California, though, I thought it might be worthwhile to see if there were any modest peaks that might be possible to bag (without technical equipment) in preparation for our Kilimanjaro climb next month.

Enter Mt. Eddy, the highest peak of the Trinity Mountains in the Klamath range. This mountain is typically ignored in favor of its more famous (and impressive) neighbors, Mt. Shasta (the highest peak in the California portion of the Cascade range) and Mt. Lassen (the first peak over 10,000 feet that Mr. Petite Peaker and I bagged!), but at 9,025 feet, I thought it just might be doable in the (as-of-yet) drought conditions of this winter.

I found relatively little information about the Eddy hike online, and nothing about current conditions. Calls to Shasta-Trinity National Forest went unanswered. The Wikipedia entry for Eddy mentions "heavy snowfall," but when I researched the Mt. Shasta Ski Park, I found that it is currently closed due to lack of snow. So we packed our day packs in hopeful anticipation of a ten-mile hike and started our four-hour drive at 5:00 AM.

I pulled to the side of the road while on I-5 at dawn to capture the sky and the incredible formations of the migrating Canadian geese.
To reach the trailhead from I-5N (we were traveling from the San Francisco area), exit Edgewood-Gazelle (exit 751) and turn left onto Stewart Springs Road. The road was a little bit icy, but it was nothing compared to the ice and slush that awaited after we turned right onto Forest Road 17. (This is the road we were trying to contact the National Forest about; it can be closed in the winter due to icy or snowy conditions and such a closure would have made our trek impossible.) Continue uphill on this road for about ten miles to the trailhead.

At the trailhead, a Pacific Crest Trail (PCT) sign marks the trail, though there is no mention of Mt. Eddy. Head toward Dead Fall Lakes.

The easy first portion of the trail, headed toward Dead Fall Lakes.
The trail was an easy three miles to the first of the lakes, which was completely frozen and looked great for ice skating. We ran into three couples who were doing a loop around the lake; they then headed back and we ran into no one else on our way to the summit or on our return trip.

After passing by two more lakes (also frozen) higher up and several icy/snowy patches, we came across the summit trail junction (the first mention of Mt. Eddy) and made our final ascent. If I were to label the first three miles of this hike as "easy," I would categorize the remaining two to the summit as "moderately difficult," though I may have felt differently if there were no ice. There are frustrating switchbacks at the end, at a point where it looks like you could just jog straight up to the summit - but it's steeper than it looks, and I have no doubt that the switchbacks are helpful.

Mr. Petite Peaker throwing stones on the second frozen lake; yes, it's really solid!
The third and final frozen lake we encountered, with the summit in view.
Don't get discouraged at this point; though the summit looks to be a long way, it's less than two miles from here.
The first mention of Mt. Eddy. Shortly after this point, you'll reach the switchbacks of the final stretch.
The summit of Mt. Eddy was cold and windy, but snow free. (Snow could be seen on other parts of the summit ridge.) The view of Mt. Shasta was absolutely stunning, perhaps even more so because you don't get this view from the trail at all - you have to set foot on the summit for the tremendous payoff.

With our backs to Mt. Shasta, looking out at the ridge from the summit of Mt. Eddy.
That view!
Mr. Petite Peaker found the summit marker after I had given up hope that we'd find it.
Though stunning, Mt. Shasta also made me sad. It should not be so dry in January. We need some major snow and rain to come our way in the next few months!

Two musts for a great hiking trip: an incredible view and an even more incredible trekking partner.
The five-mile return trip to the trailhead was pleasant (though it felt long), and all in all this was a very worthwhile day trip and hike, especially at a time when there is little snow and my lungs were craving some heavy use.

Hello, 2014

We said goodbye to an incredible year and are looking forward to whatever 2014 may hold.

As the sun sets on another year, what are you looking forward to in the one that is to come?
(Photo taken from Muir Beach in Marin County, California on January 1, 2014)
I'm not big on resolutions (who keeps them, anyway?) but I do love the feeling of starting anew and thinking about goals for the next year. None of my wish list items for 2014 are material; they are all adventures. Some are already booked and on the calendar (we are headed to Tanzania to hike Mt. Kilimanjaro in February!) and some are awaiting warmer weather (Mt. Elbert and Telluride's Krogerata, both in Colorado and therefore conceivable road trips, are pretty high up on my list).

But I am reminded, time and time again, that beauty is in my own backyard, too. Whether you live in California (like I do) or Wyoming or Turkmenistan or anywhere else on this incredible planet, you need only open your eyes to take in the loveliness of nature.

And along those lines, more than any peak that I'd like to bag in 2014, I'd like to achieve more loveliness within. As I strive to spread more love to those around me and in my different spheres (home, work, play), I hope that this blog can be a place of inspiration and encouragement for any who may stumble upon it.

Wishing you 365 days of love, laughter, and beautiful landscapes.  

From the Muir Beach Overlook