my dark day

For the many of us who have lost someone special, there are certain days of the year that make it hard to keep on moving forward, to keep on growing old. The deceased's birthday or the anniversary of the day he/she died is almost always harder for us than all other days in a given year. But since losing my older brother, the hardest day of the year for me has always been MY birthday. That's right, my own birthday. I still recognize my brother's birthday, the day of his diagnosis, and the day of his death. I light a Yahrtzeit candle. My family goes to the cemetery. We mark these events the same way everyone else does.

But the hardest day of the year, for me, is the day I turn yet another year older. Older than my big brother. From my perspective, he stopped aging at age 30. The day I turned 30, two and a half years after Dave passed away, I was a mess. But then I was okay. I was surrounded by good friends, who raised money for Brain Tumor Research. Well, I thought, I finally caught up to you big brother. Thirty's not so bad. 

But then I turned 31. I had officially outlived my older brother. I didn't do a single celebratory thing that day. I think I ate Taco Bell and went to bed early. I just didn't want to be around anyone else on my "dark day."

So last week, when I turned 35, I just felt awful. Turning another year older, I always feel awful. I'm used to it now. I can see it coming. And I do my usual ignoring of the inevitable, "what are we doing for your birthday" texts.  Because, let's face it: I'm now 35 and my big brother is 37 still 30. 

I know Dave would never want me to sit at home on this special day and wallow in my sadness. I don't do that (anymore, at least). I go out to dinner. I try to run a race or be outside. I try to learn something new, or travel to a different location. But I know this day is still going to be excruciatingly hard. And often the days leading up to the birthday are even harder. 

Sometimes I just disappear off the grid for a few days. Frequently, I try to ignore the darkness that I know is inevitably coming. Other times I just let the sadness envelop me and sit at home and cry. Mostly, though, I've learned to be honest with people. I find myself saying more and more to my close friends and family, "you know, my birthday is just a really hard day for me." They don't have to know why it's my dark day. They can just nod and move on. Knowing that the next year they will still ask me what I'm doing for my birthday. Because that milestone will come, whether I like it or not.

A few days after my birthday, I saw a former Business school classmate celebrating her 30th birthday. With a giant party. And a huge close-up photo of the stitches in the side of her head. And an announcement that, after eight years of beating her tumor, her brain tumor (just like Dave's) had morphed into the dreaded Glioblastoma (GBM 4 for short). She referred to her tumor as terminal and at that point, something changed inside my head. No, not really. I can't change my whole temperament that quickly. But I did have a bit of a reality check.

This lovely young lady is actually the true definition of a fighter. She will forever remind me of why we (I) need to celebrate life. And never give up. Regardless of her diagnosis, her words are always filled with hope and I love seeing her smiling face when we meet up in Golden Gate Park for the Brain Tumor 5K (almost every year). Next year, I will complete the race for her. But I know she will still be here to ring in yet another birthday, to complete yet another milestone. And she will once again remind me that it is not about feeling sorry for myself. It is about celebrating the gift I receive by being able to turn yet another year older.

#curegbm #greymatters #curebraincancer #braincancerawareness

http://www.abta.org/

charcot marie foot

"Symptoms, then are in reality nothing but the cry from suffering organs"
-Dr. Jean Martin Charcot

Ever since I can remember I've suffered from mid-sleep charlie horses. If you're not familiar with the term, I get cramps in my calves while I'm asleep. Yes, I said while I'm asleep. In complete and total pain is a very jarring way to wake up.

So you can imagine my surprise when, halfway through my very first marathon, both my calves started actively cramping. Calf and foot cramps, until that point, had been reserved for laying down and/or sleeping. But instead I found myself running (for over two hours) through the active cramping in my lower legs. When I finally finished the race, medics put ice bags on my calves. While that helped relieve the pain a bit, removing the ice resulted in two of the worst cramps of my life; charlie horses so painful I dropped to the ground, screaming and swearing uncontrollably and scaring the medics who had circled around me and my family. All I could think was, "I haven't had a calf cramp this bad since I was fifteen years old." And I probably hadn't.

Running a marathon (and smiling) while my legs are actively cramping

If you've never suffered from a calf cramp (or in my case, many many calf cramps), you are lucky. They are painful. I'm never sure when they'll start, I do not know how best to ease them, and I absolutely do not know how to prevent them.

I wasn't the only person in my household with this mysterious midnight pain. My brother also suffered from mid-sleep calf cramps (and was the one who first used the term "Charley horse" and taught me its meaning). Most of my memories of Dave's calf cramps were during his high school years. Despite being two and a half years younger than Dave, we would both suffer leg pain at the same time, often during the same night. While I would always choose to instantly grab my leg (or legs) and try to massage out the cramp, Dave chose another treatment; he'd try to stomp them out. Dave would suddenly jump out of bed and start stomping down on his leg. Once he was satisfied he'd gotten the cramp out, he'd fall right back onto his bed and into sleep. The number of times I woke up to the sound of Dave stomping his leg are too numerous to count. It was a typical occurrence in our home.

And clearly I still continue to get these cramps. What's interesting to me it that there is very little known about WHY I get searing pain in my calf muscles that wake me up. I have been told about any number of possible causes of my distress, but none of them make any sense. Everyone seems to offer up an unsolicited solutions to this problem. First up, lack of potassium. Sorry friends, but I am absolutely 100% not potassium deficient. It's not the culprit. Trust me; I have my potassium level checked every six months (an unrelated concern). More potassium will not eliminate my cramps; I could eat all the bananas in the world and not get better.

The suggestion that dehydration is to blame for my charlie horses is much more believable. I don't drink enough. I try, especially with all the running I do. But I am always thirsty, most especially in the middle of the night. So I drink a lot. And I pee a lot. And I drink a lot more. But I never feel hydrated.

During my post-marathon calf cramp fit, my mom offered up some life changing information; calf and foot cramping is a symptom of Charcot Marie Tooth disease. Charcot Marie Tooth (CMT) comprises a group of disorders passed down through families that affect the nerves outside the brain and spine; aka the peripheral nerves. I know, it's an odd name for a foot disease (actually it's foot and hand). But it's named after the three doctors (Charcot, Marie, and Tooth) who discovered it. Several members of my family suffer from CMTX, the x-linked form of the disease.

After the marathon I had truly reached my breaking point. My feet had been hurting so bad for so long I had to finally see a podiatrist. Four days later I had the official diagnosis; I have Charcot Marie Tooth. I wish I could say I'm not devastated. But I am. Why else would I have avoided the podiatrist for twenty years? Up until last week I had still hoped I'd hear, "new shoes will fix your chronic foot pain." But they won't. Foot pain is a part of me. Most of the people close to me know my feet hurt every single day. Some days I run with the pain. Other days I run through the pain. But most of the time, I run despite the pain.

Packing for a marathon includes lots of 2nd skin bandages

So what does this mean for a (now official) marathoner? Of course I had to ask my doctor about the running. Would I have to give it up? The short answer is no. With lots of orthotics. And maybe surgery. But first orthotics, lots and lots of orthotics. And new shoes. And stretches. And special exercises. And the frozen water bottle under the foot trick that I promise alleviates plantar fasciitis.

Many people prefer to keep their CMT on the down low. In their defense, the symptoms can become very dehabilitating, especially for men. But I'm putting it out there; I am a marathon runner with CMT. Because I want you to know. And to understand. If we're out walking together, I'd like you to slow down. And when we're out on a hike, the pain might become so unbearable for me we have to either stop for a while or immediately turn back. But the pain won't stop me. I will continue to go out and run. And maybe even hike once and a while. And maybe, just maybe, someday I'll run another marathon. After all, "few things in life match the thrill of a marathon." (Fred Lebow, runner and founder of the NYC Marathon). Mr. Lebow, I completely agree.

I'm already thinking about my next marathon...

ojo rojo

My last morning in Mexico I woke up with tears in my eye. After wiping them away, they quickly returned. I ran to the bathroom to see what I knew was inevitable; an eye infection. Was my eye going to be red, pink, or white? It was white. Phew, I thought, at least I won't stop traffic with my clearly infected eye. Plus, there was still time to wait before officially declaring myself with pink eye, since it wasn't puffy or pink.

I have had conjunctivitis (pink eye) in more countries than I care to count. If you are not prone to eye infections, they can be scary entities. Many people don't like touching their eyes. And an eye infection scares the sh#* out of them.

I am no such person. I've been getting eye infections my whole life. I've also worn contacts (on and off) since middle school. Sticking my fingers in my eyes is common practice for me. I have been known to put a contact back in during the most precarious of situations. Because, believe it or not, the most dangerous place for me to be in is the one where I have no way of seeing. Without prescriptive lenses, I can't see. I'm not exaggerating. My prescription is in the negative double digits and I have never met a person with worse eyesight than mine. I can't even read the clock on my nightstand without lenses.

What the world looks like to me without corrective lenses.

So what does one do when she finds herself with an eye infection in a foreign land? Oh yeah, to make matters more complicated, I was on a small island off the Caribbean coast of Mexico.

I casually went down to my hotel lobby and told the lovely desk agent, "Umm... fijense que estan infectados algunos ojos." (Translation: Umm, I think some eyes might be infected). She quickly told me about a doctor with morning hours, whose office could be found above a pharmacy three blocks away. She gave me good directions (rare in Mexico), and I headed out.

I found the pharmacy, but I was too early. Doctor hours didn't begin until 10am. I had two hours to kill. No problem, I'd be back. But just out of curiosity, I asked the pharmacist how much the doctor visit would cost me. $35 pesos ($3). Yep, $3 to see a doctor without an appointment. I would definitely be back.

This incident reminded me of one particularly silly bout with pink eye while in Peace Corps training. As I mentioned, I have gotten pink eye about once a year my entire life. Sometimes it's bacterial and sometimes it's viral. I used to get pink eye so frequently, I'd travel with my own bottle of sulfa drops - a miracle cure, depending on the type of pink eye you've got.

I had pink eye during field-based training in Danlί, Honduras. One thing we like to tout about the Peace Corps is the free health insurance. So, I was taken one morning via Peace Corps white van to a doctor's office. The Peace Corps staff member with me thought my "ojo rojo" (red eye) was hilarious and everyone else was pretty much freaked out. I was calm. Another bout of pink eye. Would it be bacterial or viral this time? This particular bout of pink eye left my eye red, puffy, and oozing pus. I know, gross. But it was quickly treated.

Honestly, the worst part about pink eye in a tropical climate is not being able to wear contacts. During my normal life in perpetually cold San Francisco, I can wear my glasses every day. But when I want to swim, or even run a long distance, glasses just don't cut it. And I'm not about to go without. So I put in my handy contacts. And I'm good to go. Until I'm not. Because inevitably, I will get an eye infection. I know I will. And I do.

So why didn't I get LASIK all those years ago? Somewhere in between all that travel, everyday life, and eye infections, my eyesight was still getting worse (along with my pesky astigmatism). My eyesight has since tapered off, but now the years are numbered before I'll need reading glasses too. I know many LASIK candidates who wear glasses for driving now. A few years without glasses? I didn't necessarily need that.

Plus, glasses have become a part of who I am. They are me. Just like having brown hair and brown eyes, I wear glasses. It took me many years to be okay with wearing glasses in public (I worshipped my contact lenses for the 10 years I wore them). And I'll still wear them when playing sports. But I've become okay with wearing glasses. And I've noticed many women have as well. No girl had glasses in middle school. Everyone was getting contacts. But now, I have several friends and even an aunt who got married wearing glasses. After all, we don't expect men to get contacts, even for their weddings. So why should women have to?

The answer is we don't. Despite ridiculous websites like this one, a Wikihow entitled, "how to look good in glasses (for women)." Totally absurd. Just wear your glasses. You'll not only look good, you'll also see well. It's win-win.

I am proud of my decision to wear glasses, even if I'll never be able to wake up and see clearly without them. Even if it means sleeping with a watch to be able to read the time while in bed, or wearing glasses in the shower so I can see where I'm walking (and also find the shampoo). And yes, my glasses break. And contacts dry out my eyes. And my eyes get infected. And I'll never have cool sunglasses (I have prescription ones, but because my prescription is so strong, the lenses are in super small frames which looks silly). But, I'll look like me. And that's what makes me the happiest.

don't drink the water

Don't drink the water. It's the first thing I'm told in response to, "I'm going to Mexico."
Well, it's still true. And yet it's easy to forget. Well, not really.

I looked around the airport while I was waiting for my bus to Mérida to arrive. I wanted to refill my water bottle. I searched up and down the arrivals hall, but found not a single water fountain. That was the first time (and certainly not the last) I remembered "I can't drink the water." I was tired from a flight full of coughing people; I quickly bought an orange juice. Because bad tap water accounts in part for Mexico being the highest consumer of bottled water and soda, an average of 43 gallons are consumed per person every year. That's alarming.

The Cancun airport looks like Miami's airport. It's hot and humid outside, and air conditioned inside. People are dressed up, dressed for the beach, traveling with their families. The signs are all in English and in Spanish. The announcements are in English and in Spanish. I could be in any major city in the US. But there are no water fountains. I am in Mexico.

Without getting into water engineering, I just want to say that I don't know why we can't partake in the tasty beverage of tap water. I spent my first full day in the Yucatán, in a village on the Gulf of Mexico coast, known as Chicxulub Pueblo, and the first home I walked into had a giant 5 liter gallon of potable drinking water. For the family. For everyone. Apparently, the water does not discriminate. Man or woman, foreigner or indigenous, the water is not for drinking.

A quick Google search about why to not drink the water (is it still true or an urban legend?) sent me on a shocking path of learning and discovery. Did you know Mexico had an outbreak of Cholera in the 1990s (and water was named the culprit)? Or that Mexico city's giant 1985 earthquake burst water pipelines and sewers, increasing waterborne diseases? Not to mention that years of water traveling through underground pipes on to dirty rooftop water tanks before heading into consumer houses have led to public doubt that tap water is currently safe enough to drink.

Much of Mexico is not any different from its fellow North American neighbors. Streets are paved, there's running water, electricity, and flushing toilets. There's even a Costco in Mérida. There are businesses that happily accept dollars, and resorts that look no different from an Island Getaway in Hawaii. Except that you can't drink the water. I pass people in nice cars, on cell phones, going to school and work, playing with kids, swimming in their own pools, and drinking coca cola with their lunches. But not drinking the water. They still just can't. And they never forget. I just hope I don't.