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

Trail Report: Mt. Whitney

All photos in this post can be enlarged by clicking on them. Please do not use without permission. This blog post documents our quest to reach the top of the highest mountain in the contiguous United States, Mt. Whitney.

Day 0: Before Setting Out

I went into this backpacking trip with several concerns:

1. Getting my heavy pack up a steep trail. (The Mt. Whitney trail has an elevation gain of over 6,100 feet. I needed to carry my sleeping bag, bedroll, clothes, extra shoes, camp stove, camera, extra lens, water, snacks, sunscreen, toiletries, and other miscellany on my back. Wayne had an even heavier load with the tent and bear canister filled with three days’ worth of meals, in addition to his other items.)

2. Staying warm through freezing temperatures at night. (Our camp, located at 12,000 feet, would be extremely exposed.)

3. Going to the bathroom in the great outdoors. (I had done it before but never on a trail that required me to “pack it out” – in other words, carry my solid waste with me.)

4. Drinking enough. (All water we obtained along the trail would have to be treated with iodine tablets, which made me a little nervous. I tried to bring salty, soupy items to eat, knowing they’d provide additional hydration and mask the taste of the water.)

I think fears magnify our hardships. All of these things were undoubtedly going to be hard, but I tried to tell myself not to worry so much, because doing so would turn my fears into self-fulfilling prophesies.

Day 1: Trail Camp (The grass is greener right where you are.)

We set out early (5:15 am), though not as early as we have in the past. We knew we had plenty of time to reach Trail Camp.

On our way up to Lone Pine Lake (our first designated resting stop), several late-leaving day hikers passed us. I found myself thinking, “Of course they are able to go so fast. They aren’t carrying their beds and their homes and three days' worth of food on their backs!”

In reality, though, I’ve had backpackers pass me when I day hiked on previous summit attempts. My thoughts at the sight of them? “Of course they are able to go so fast. They aren’t traveling the whole length of the trail in one day!”

But is the grass really greener on the other side? If you are too busy coveting the benefits of someone else’s journey, you’re failing to appreciate the rewards and beauty of your own. At the end of the day, summiting Mt. Whitney is hard, no matter your method; fortunately, it is also incredible.

We rested at Lone Pine Lake and fired up our JetBoil for the first time, enjoying hot chocolate and apple cider before continuing our journey up the trail.

We used lake water and didn’t treat it, since we were heating it. Our brief conversation about it:

Me: Did this water boil? Am I going to die? Wayne: I let it come to a rolling boil, yes. And you aren’t going to die from it. At worst, you’ll just get Giardia or E. coli.

From Lone Pine Lake, we hiked to Outpost Camp (10,365 feet), where many backpackers opt to spend the night before summit day. Our permits were for Trail Camp, 1,635 feet higher, so we continued after a brief break and went up to Mirror Lake. At Mirror Lake, we enjoyed what was seriously the best backpacking food we packed – bacon jerky. I don’t like bacon, but I think the reason this stuff tasted so good was because it didn’t taste dehydrated. It tasted like it was freshly fried and right out of the skillet.

We ended up staying at Mirror Lake for about two hours, snacking, talking, watching some men sport fish, and playing Phase 10. I was awed by the peaks that surrounded us – Mt. Muir, Thor Peak, and Wotans Throne. I think what was particularly daunting was the fact that these peaks looked so high, yet they weren’t Mt. Whitney. To look at the highest point and realize that you are going higher than that is a little overwhelming.

The next section of the trail – from Mirror Lake to Trailside Meadow and then the final ascent to Trail Camp – was definitely the hardest of Day 1.  The rocky uphill trail was seemingly endless, and the elevation made it even harder to amble up carrying one-third of my body weight on my back.

Regarding fear #3, above: there used to be a solar toilet located at Trail Camp, but the National Park Service had to remove it because it was a privilege that hikers were abusing – stuffing trash down the toilet and doing other things to destroy what would have been a really nice thing to have. Since there are no facilities on the trail, then, hikers and backpackers are given certain guidelines (do your business at least 100 feet from any trail or water source; pack out all solid human waste using a wag bag). I managed (it’s never comfortable), but I am shocked at how many people don’t follow these guidelines. We saw wag bags tucked between rocks, toilet paper near the trail on some occasions, and at least one instance where someone had gone right on the trail. This may sound disgusting, but really, it all just makes me so sad. I don’t have any delusions of nature being “pristine” even without a human presence, but really? Mt. Whitney is a stunning, once-in-a-lifetime experience for so many. Say what you will about government agencies, but the National Park Service is my favorite one. And the NPS indeed does a great service. Don’t take advantage of it and risk getting this trail shut down!

In our final ascent to Trail Camp, I rested in quite a few places and questioned hikers coming down the trail. How far is it to Trail Camp? I was tracking my mileage using GPS and I knew the distance between Trailside Meadow and Trail Camp (approximately 1.0 mile), so in reality I knew the answer to my own question. But it is always so interesting to me to hear individual perceptions of distance. About halfway between the two and with half a mile to go, I heard everything from 0.5 miles to 2 miles in response to my question, with 1.5 miles being by far the most common answer.

Night 1: Tossing and Turning

We arrived at Trail Camp at dusk. While Wayne set up our tent, I crawled into my sleeping bag for warmth and ate space ice cream. I knew I was operating on very few calories and needed to eat, but I found myself with very little appetite. I thought something hot might help; we fired up the JetBoil and made lasagna with meat sauce. I had a few bites before trying to drink some more hot chocolate and eventually calling it a night, promising myself that I would have a hearty breakfast.

I struggled through the night. It is hard to sleep at 12,000 feet (and, as I found out when doing a little research later, hard to eat as well). My breaths were extremely shallow. I fretted about dying in my sleep from lack of oxygen. I was thankful that I had brought a pillow (compressed in my compression pack with my sleeping bag) to prop myself up; I added my clothes to the pillowcase as well. I woke up several times in the night, each time (thankfully) breathing a little bit easier. Day hikers started to noisily come through around 2:00 am and continued in a pretty much endless stream until I finally gave in and got up around 4:30. I went outside to capture the dawn; just before the sun came up, though, it became incredibly cold and I scampered back into the tent and my sleeping bag.

Day 2: Summit Day (Ignorance is bliss on the 99 switchbacks.)

Despite my promise to myself, I had a hard time eating breakfast. I had about five bites of broccoli cheddar soup and nothing else. Wayne collected water to treat and we packed most of our stuff into our packs to leave in the tent. I opted to take only a small bottle of treated water, my camera, Excedrin, jerky, and sunscreen. Wayne brought two bottles of water with Gatorade powder added plus his full pack bladder (also with Gatorade).

Our first task of the day was to hike from Trail Camp to Trail Crest, up the notorious 99 switchbacks. (I have also seen the number given as 97 online, but my count resulted in 99.)

This is a very daunting section of trail, and at such high altitude, it is easy to get winded. We ran into one family on our way up with a teenage son who was struggling with hypoxia; Wayne gave him an electrolyte gel pack, which helped temporarily – but not too long later, they had to turn around and head back to lower elevations.

At first, I was encouraged by how quickly we were progressing up this 2.2-mile stretch. I counted the switchbacks, and in no time, we were already at #33 – a third of the switchbacks, done! By tracking our mileage, I could see that we were even more than a third of the way up. This is where I should have stopped to think, “If it seems too good to be true, it probably is.” But ignorance, as they say, is bliss.

The first 80 switchbacks weren’t so bad. Switchbacks #81-92 were tolerable.

Switchbacks #93-98 made me want to cry.

And #99 made me want to die.

Why don’t the trail guidebooks ever tell you that?

While on the final torturous stretch to Trail Crest, we ran into two women and a teenage girl, headed back down. They looked at us with great concern.

Woman #1: Where are you headed? Wayne: The summit. Woman #1: You need to turn back. It’s too late in the day, and storm clouds are coming. The summit is clouded in. Me: I’m not turning back. This is my third attempt. I am making it to the summit. Woman #2: I’ve done this five times. I’ve never gone to the summit. Trail Crest is my summit. The mountain will always be here. You can always come back. Me: I’m going to the summit, because I don’t want to come back! Woman #2: What do you have to prove? Woman #1: Make 2:00 pm your turnaround time. If you’re not at the summit, you have to turn around. It’s not safe.

These women were really very kind. I regret being so stubborn, and I was glad that we ran into them the next day at Whitney Portal – where Woman #1 greeted me with a big hug and the question on each of their minds: “Did you make it?” There is a lot of camaraderie on the trail.

From Trail Crest, we had a very brutal downhill section to the John Muir Trail junction. Downhill portions of a summit hike are always brutal for two reasons: one, they are just creating more uphill for you later on; two, they become uphill portions on the return journey, when psychologically you are really only prepared to go down, down, down.

Speaking of the JMT: we encountered several thru-hikers finishing up their 210-mile trek from Happy Isles (in Yosemite) to Whitney Portal. The fewest number of days it had taken anyone we encountered was 8; the longest time spent on the trail was 29 days. They were all so proud. I did, however, notice two distinct types of pride. There was the pride of the young, lean, 20-something bachelor hikers, which amounted to, “I knew I could do this, and I did. What, you think I’m surprised? Of course I did it in eight days.” Then there was the pride of the sexagenarian, grey-haired couple, which came across as, “We didn’t think we could do this, but we did. I am so proud of my partner. I couldn’t have done it without him/her. We did it in 29 days.”

At the John Muir Trail junction, we started our brutal final ascent. This was very rocky terrain with a steep dropoff on one side for most of the way. The 99 switchbacks include a short area where railing can be used to stabilize yourself; I think the NPS should consider putting some more railing beyond Trail Crest. (I guess they assume that anyone making it this far isn’t going to fall.)

2:00 pm came and went. We encountered one gentleman who told us that the summit wasn’t worth it because it was clouded in. Nothing to see, he said. Don’t waste your time.

But the sky was getting bluer and the clouds were moving on.

I had to stop frequently for rest. And let me tell you, I will never mock Wayne’s Gatorade (for its unnatural color and ingredients) again. My water was long gone. (I found that I loved the lake water that was treated with iodine tablets and then neutralized with another tablet. It tasted like the bathwater I used to drink when I was younger. A little soapy and dirty. And yes, right about now, everyone outside of the cystinosis world is disgusted. But I guarantee that most of those who have cystinosis or have children with cystinosis understand.) It is possible that the Gatorade Wayne was carrying was what got me to the summit.

For a while, the summit hut was in view. As we got closer it disappeared from our view and all we could see were rocks. The pathway became more and more treacherous.

As time went on, people coming down from the summit became more encouraging. While it would still be a long time before anyone would tell us what we wanted to hear – you are almost there – we did hear a lot of people saying things like, “It’s worth it” and “You’ll make it.” The appearance of the final ascent was completely overwhelming, looking to be entirely made up of scree. As we turned the final corner, we encountered a man with his teenage daughters. He told us that we had about 200 yards until we could see the summit hut and then a final 200 yards until we were there.

I know my football fields, and he was a little off. I think it was actually about four football fields before we saw the hut, but then only half a football field until we were actually there. We arrived around 4:30 pm. The weather had cleared, and the view was absolutely breathtaking.

I cried at the top. I can’t even put words here to really describe it, which must be surprising given that I’ve used so many words to document the journey.

Since I can’t really describe the feelings I had pulsing through my veins at the top, allow me to be introspective about the past for a moment.

In November 2011, I was told that my pulmonary function was deteriorating. My lungs were not at full capacity, and they were not functioning even at the capacity that they had. I asked what I could do. I was told that “walking on a treadmill at an incline might help.” For several weeks, I had a hard time processing what I had been told. I wanted to help myself, but treadmill walking sounded so boring.

I had never been an outdoorsy person, but there was one goal I had in mind: hiking to the top of Half Dome. When I did it for the first time in June 2012, it changed me. I saw all of God’s creation that I had been missing. I also needed Wayne to make an emergency phone call to the park rangers, who brought me oxygen.

(God's creation is right where you are. You don't have to climb mountains to see it. You don't have to leave your home. But I guess I needed the wakeup call of the rocks crying out.)

I have done Half Dome two more times (fortunately, minus the ranger call and need for oxygen!) since then, as well as many other hikes in the Sierras. My lungs feel strong. Nature just doesn't get old.

So you know what I'm thankful for most of all? Not the mountains or the alpine lakes. Not the rocky trails or the breathtaking sunrises. Not anything I've done on my own (because I've done nothing on my own). I give up far too easily. I am a weakling through and through.

What I am most thankful for is the diagnosis that put me atop that mountain.

Without being told that my lungs were failing me, I never would have experienced all of this.

God blessed the broken road. Thank God for my imperfect lungs.

Okay, I'm going to finish up Day 2 before I start crying again.

Of course, once at the summit, we were only half done. We had to get back to Trail Camp, preferably before dark. The return trip was tough, with the sun finally out and beating down on us until it sunk below the mountains. We were still afforded some beautiful views of the areas below us.

Night 2: Weathering a Storm (Storm clouds make for beautiful sunrises.)

We indeed arrived back at Trail Camp just as it was starting to get dark, but before we needed to use our headlamps. I went straight into the tent and crawled into my sleeping bag without dinner. Aside from a few bites of soup, all I had had during summit day was about 20 ounces of Gatorade and a couple pieces of chile lime beef jerky. I heard Wayne filling the JetBoil as I drifted off; he brought me two cups of hot chocolate. I was able to drink about half of it.

I slept much better than the previous night, not waking up at all until the storm came. At about 1:00 am, I awoke to the sounds of rain and moderate wind whistling around our little two-man tent. A few hours later, my side of the tent had come up and was threatening to collapse on top of me, and the winds were so strong that we knew we just had to wait it out. To be honest, I was pretty scared.

Even after it started to get light, we remained huddled in the tent waiting for the winds to die down. When we did venture out, the sun was already up - and the most gorgeous sky greeted us.

Day 3: God Bless the Cook (If you made it on something other than a camp stove, you are my hero and I'm eating it.)

As the wind died down, it became evident that the rain might follow us as we hiked down the mountain, so we opted for an early start. It was difficult to put on our heavy packs again, but I was already dreaming of the infamous burger at the Whitney Portal Store.

We began our trek. My knees ached as we descended, with the rocky terrain presenting an additional challenge. (Stepping down from tall rocks can be more difficult than taking large steps up them.)

I was resting just below Lone Pine Lake waiting for Wayne (we sometimes hike separately) when another descending hiker that I had encountered higher up passed me by. "I thought you'd be eating that burger by now!" he called out. "I'm salivating," I replied.

Soon, he said.

Not soon enough. But I tried to remember lessons learned from Clouds Rest.

Clouds Rest is a mountain in Yosemite. It's a hike I did in September 2012, and the views from the top are stunning. It's a beautiful and prominent mountain, difficult but less strenuous than Half Dome according to most guidebooks.

Clouds Rest has a very distinctive shape. It seems to be smiling at you. The hike is an interesting one: a mile and a half into the hike, you very quickly gain 1,000 feet in elevation via strenuous switchbacks. This puts you on the ridge, but you see that smile shape? You then hike down before going back up. It doesn't look like much, and on the way to the summit, it doesn't even feel like you are going down so steeply.

On the way back, though, when you are already tired from hiking 10 miles, it is pure torture to then have to go steeply up. Every muscle in your body screams that you are supposed to be headed down.

Clouds Rest is the only trail on which I have ever cried tears of pain.

We passed Clouds Rest on the way to Lone Pine for our Whitney hike. Every time I see Clouds Rest, I hear Taylor Swift's "We Are Never Ever Getting Back Together" in my head. I will never do Clouds Rest again. (Never say never, right?)

But Clouds Rest provides gorgeous views. I didn't know when I hiked it that I would never do it again. What Clouds Rest taught me is that I need to enjoy every bit of scenery as if I'll never see it again.

So that's just what I tried to do as I descended the seemingly endless trail to Whitney Portal. Every time I felt discouraged, I tried to exit my own tunnel vision and observe the beauty around me.

When we finally arrived at the Whitney Portal Store, there were already many backpackers enjoying their burgers. I don't know if these are amazing burgers by normal standards, but they are what everyone - particularly John Muir Trail thru-hikers - dream of on their way down. God bless the cook, who has undoubtedly made the dreams of thousands of backpackers a reality.

We ran into the ladies who had warned us to turn around. They were full of genuine delight to hear that we made it to the summit.

As expected, the burger was delicious.

This was the hardest physical challenge I have ever experienced. I don't know how to top Mt. Whitney; I don't know that I want to try to top it. There are certainly other summits I have in mind, but for now, I'm just going to enjoy the memories of peak bagging this one.

Breaking the Silence

A few months ago, I stopped posting new material on the blog. 

As a middle school teacher, I've always been aware that I'll have my fair share of fans and non-fans among my students. I've been fortunate in that for the most part, I seem to have good rapport with my classes.

A few months ago, though, two of my girls created a fake social media account in my name. To legitimize the account, they took pictures of me that I had posted online. They wrote captions to these photos in the first person. The vast majority of the information they posted was false.

A parent alerted me to the account. When I went to it, I was horrified - but not for the reasons I think most might assume. A middle school teacher has to have a thick skin, and although I was a little hurt personally, my mind immediately went to other things that were going on at that time:

  1. I was searching for a job. In this Internet era, I knew that potential employers were googling me and could find the account.
  2. My husband and I were in the middle of an adoption homestudy. We had signed paperwork promising to be honest about all aspects of our lives, and here was someone who looked like me revealing information (presumably about me) that went counter to what we were saying.

Needless to say, I took action immediately. Initially, I didn't know who created the account so I notified the authorities and the cybercrime department of the FBI. My main concern was getting the false information OFF the Internet as soon as possible. 

I believe that the girls meant no permanent harm. While I don't understand the appeal of playing a prank on someone 20 years your senior, I guess there just wasn't enough drama in their peer group - and that's not a bad thing. Better to go after a secure adult than to destroy the fragile self-esteem of a preteen or teen trying so desperately to be accepted. They admitted to a lapse in judgment, and I have no desire to make this about them.

The point is, I gained a new awareness about how vulnerable we make ourselves. Check it out yourself - are your Facebook pictures public? (The default setting for your profile pictures is public.) Then someone - and not necessarily a sworn enemy - could create an account that looks a lot like it belongs to you. What is placed online is NEVER truly gone - even if it is taken down. Even an immature friend (assuming you're an adult; my students were merely acting their age) doing something "for fun" could put up information that is damaging later.

Do your children have social media accounts? (What happened to me prompted a conversation about this at school.) Do they post their school name? Most of my students with Facebook accounts have chosen to "like" their school or otherwise identify themselves with it online. That, coupled with a photograph, makes them an easy target should someone decide to target them. (Granted, most people won't become targets. But you have to understand that it could happen.)

Do you ever plan to apply for a job? Think about what you post. Think about what you say about others. Don't generalize a people group. (Let me tell you, I have NEVER, EVER seen anyone write online, "people with cystinosis can't hold down a full-time job." But if I did, I'd call you on it immediately. Not just for myself, but for all those who may be googled at some point.) Also remember that while treatment might be dynamic, information posted online can be static - it isn't changed, and newer information won't necessarily trump older information in Google's search result list.

In hindsight, I wish I had written both my book and this blog using a pseudonym. I'm not naive enough to believe that doing such a thing would have left me truly anonymous, but it would have added an additional layer of protection.

But there are exciting things going on in life, and I want to share those things without hiding behind a mask. There is a delicate balance, and I am searching for it.

Until it is found,
Jessica

HAWMC Day 6: Letters

Dear Cystinosis, When I hear people say they hate you, I get defensive on your behalf. Something inside me cringes.

I want to say, "Don't hate the hungry lion for being hungry. Look at his beautiful mane."

But I don't say it. I can't say it.

I have said it using other words before: just as I cannot hate my brown-sometimes-green eyes or my neither-curly-nor-straight hair, I cannot invite the sort of self-loathing that comes with hating a part of who I am. A part of who God created me to be. A part that has blessed me more than it has cursed me.

Sometimes I imagine being born without you. Would I push myself to climb mountains?

Maybe you would, a voice whispers. Because that is who you are. But maybe the mountains would look different. And maybe without the hungry lion chasing you, you wouldn't push as hard.

If brown eyes caused someone else pain, or wasted away their body, could I hate the trait without hating myself?

I'm coming to terms with the fact that maybe I could.

But I don't hate you in me. I hate what you do to others. But I can't imagine myself ever hating what you've done - and undoubtedly will do - to me.

Like a mother hen protecting her chicks, I hold you fiercely within my feathers and wonder why others just don't understand.

But maybe I am the one who doesn't understand. How can I possibly tell someone who has lost a child, a sister, a brother, a spouse - how can I possibly tell that person to love you?

I am the one who doesn't understand.

Yet when I go (whether that be many years from now of old age or tomorrow in a car accident), I want my husband to share not what you took from me, but what you gave to me. When weighed against one another, the latter falls heavy on the scales and the former remains lighter than a single grain of sand.

You have made me the hungry lion. Hungry for life, hungry for feelings of empathy that come too rarely, hungry for changing how we all tend to view the world around us. Hungry to push harder with no one but myself chasing me.

Because I know that the joy in hearing "Your legs must be very strong!" from someone else observing my movements isn't that it's true (though I hope-wish-pray-long for it to be true), but that no one would have said that to me a year ago.

For all that you're doing in my life and all that you've done,

Thank you.

Jessica

 

 

Hope is a Two-Word Phrase

I'm at a place in my life where I am not only content, but also at peace with the fact that I might die tomorrow for whatever reason. (I hear North Korea has some missiles pointed at us on the West Coast, y'all.) I'm grateful for what I've had and ready for what may come. But I don't accept cystinosis as a reason for imminent death. So I am very glad to see this, published by the NIH:

"Prior to the use of renal transplantation and cystine-depleting therapy, the life span in nephropathic cystinosis was no longer than ten years. With these therapies, affected individuals can survive at least into the mid-forties or fifties with satisfactory quality of life."

There is much to be hopeful about within this excerpt. But even more specifically:

Hope is a two-word phrase: at least.

And then there is this, published in a piece by Drs. Gahl and Nesterova: "Renal allografts and medical therapy targeting the basic metabolic defect have altered the natural hisotry of cystinosis so drastically that patients have a life expectancy extending past 50 years."

All the sad stories go viral very quickly within my community. Do you have the courage to share true hope - the hope that we don't have to wait for, the hope that exists in the here and now? In our understandable zeal to raise research funds for the children, dare we share?

Hope is a two-word phrase: at least.

I may not be the bravest person around, but I have at least this much courage.

Grace, Undeserved

I don't typically write about my students. The place where their realm intersects mine is positively sacred to me. (Plus, I don't know if they could be reading this, though hopefully they don't know of this blog's existence.) So I'm going to be vague. It is enough to say that a student was offered undeserved grace today. I felt the burden of his guilt upon my own shoulders and suggested to someone else that he be relieved of it. Because he's 12. Because we all make mistakes. Because I believe in him one thousand percent. I don't know that I had any kind of impact on the decision, but grace was extended to him in the end.

I don't believe in karma; nor do I believe that good things happen to good people or that I am good and deserving. I don't typically get angry at the world when things don't go "my way." My way is often wrong, ignorant, and detrimental to others.

Today, though, someone also offered me grace, undeserved. I was given a freebie - an offer to take a day off with pay - to deal with the mountains of work I have so foolishly allowed to pile up.

I'm 31. I make mistakes. Someone has chosen to believe in me one thousand percent. And although I turned down the offer for a day away from the students - for, truly, they represent so much of what brings me joy - I'll never forget what it felt like to be given grace.

Paradox Post: Alive in Death Valley

We ventured to Death Valley National Park this week. I thought that this was the time of year that perhaps the desert was in bloom.

In actuality, what greeted us was vast, desolate,

and mostly dead.

Badwater Basin

Badwater Basin

And yet, driving into the Valley at dusk provided me with some of the most spectacular beauty my eyes had ever taken in. There are mountains all around Death Valley - some well over 10,000 feet - and the highway maintains an elevation of 4000 feet for what feels like an eternity after the destination comes into view. The road then plunges deeply downward, taking its traveler to sea level and beyond while the highest peaks, dusted with snow, swallow him in their gaze.

We arrived and walked in silence (oh, the silence of that place) to the isolated ranger station to obtain a permit from a manless machine. On the path we encountered a large, black crow pecking furiously at a bone, alabaster white from endless days under the hot sun. And I thought - how much more of a desert cliché can one experience?

But the Valley is as complex as this desert cliché is simple.

"I didn't really understand what deserts were. I'd taken them to be dry, hot, and sandy places full of snakes, scorpions, and cactuses. They were not that. They were that and also a bunch of other things. They were layered and complex and inexplicable and analogous to nothing." (Wild: From Lost to Found on the Pacific Crest Trail by Cheryl Strayed)

I wish I could capture those complexities. But in the long list of areas in which I fall painfully short, photography is excruciatingly near the top. I try desperately to hold the pictures in my mind's eye, because I know that when I look at the work of my camera (a marvelous device of modern engineering though it may be), disappointment will rule the day.

Artist's Palette

Artist's Palette

(Artist's Palette)

When we first entered the dunes, I felt an immediate craving for action. A warning sign promised sidewinder rattlesnakes. I looked eagerly (and fearfully) around me, wanting to see this creature's sandy dance.

But there were no creatures. And beyond the few couples that posed for photo ops near the place where sand met gravel, there was only us. The quiet was oppressive at first. Then, as we plunged farther into the seemingly endless dunes, it was telling.

"The silence was tremendous. The absence felt like a weight. This is what I came for, I thought. This is what I got." (Wild: From Lost to Found on the Pacific Crest Trail)

The animals here are not pretentious, but they are here. They are home. They live in a place where, for much of the year, humans cannot. (Below are bird tracks criss-crossing the dunes, coyote tracks, and my tracks.)

Bird Tracks

Bird Tracks

Coyote Tracks

Coyote Tracks

My Tracks

My Tracks

What a glorious place to escape the lively scene at the mall, the hectic pace of holiday traffic, the bright lights of Christmas trees and decorated houses (all of these things immensely beautiful). What an amazing reminder of the vastness and diversity of creation. What a blessing to realize that even the dead places are silently pulsing with life.

Climbing Dune

Climbing Dune

How important to know that I am small; smaller than I can appear even in a photo displaying the vastness of a desert. How humbling that shortly after I climb the high dune, my footprints will be blown away and others will be left to wonder, "Has anyone traveled here?"

Small

Small

Footsteps

Footsteps

At the lowest place in the Western Hemisphere (that a person can stand on, anyway), I touched my finger to the ground and brought it to my lips. Salty. Perfectly seasoned. Even in the lowest lows, the most desolate of lands, there can be specks of wonderful. After all, what would the most perfect and beautifully cooked cut of meat taste like without salt? Disappointing.

Lowest Point

Lowest Point

Death Valley was everything but that.

"Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me." (Psalm 23:4)