Favor

A friend recently did me a small favor, replacing a small but important item. The replacement was nearly identical to the original, but for one tiny difference. That tiny difference has turned out to be profoundly important, turning my friend’s small favor into a much larger gift.

For nearly three years, I’ve worn a pin on my ID badge at work, picked up at a company PRIDE event. It’s a very simple design: a rainbow with the word “ally” underneath. It fell off a couple of times before I Gorilla Glued it to my badge, afraid I would lose it for good. It was interesting to wear it everywhere I went at work, sometimes noting eyes lingering on the pin. A fellow associate even stopped me on the elevator one day. A stranger, she thanked me for my support. I was startled and don’t remember what I said, but I know I smiled, right then and for awhile afterward.

Fast forward to a couple of weeks ago. I removed my badge at the end of the day, and the pin was gone. When it didn’t turn up after a few days, I sent a note to a friend, asking if PRIDE had any more of the pins. A few days later he brought me a replacement from his own personal stash. There was the familiar rainbow, but alone, without the ‘ally’.

I got out my Gorilla Glue; it felt good to have my badge back to normal. Except it’s not normal. Just as I’d noticed others’ reactions when I first began wearing the ally pin, I’ve again been noticing their reactions to the rainbow pin. But I shouldn’t: I’d long ago stopped being aware of a reaction to the first pin. Something’s different, something so subtle I can’t describe it. It must be the length of time someone looks at it, or the way they then look at me. It doesn’t happen with those who know me well, and it doesn’t happen with everyone. But it happens.

The gift of the rainbow pin is becoming more than a kind favor from a friend. It’s becoming instead an opportunity to walk, if only for a split second, in someone else’s shoes. I grew up white in a white world. I’m not disabled, and I’m not LGBT. My LGBT friends must choose every single day in every single circumstance whether it is safe to be who they are and face potential judgment. My friends of color in this country don’t have even that “luxury”, instead facing the constant possibility that someone will instantly judge them based solely on how they look. All I know is that discrimination is flat out wrong. I’ve since found my lost ally pin, but I’m not going back. I’m planning to buy a whole slug of rainbow pins for when my Gorilla Glue next fails…let me know if you want one.

“The opposite of love is not hate, it’s indifference.” –Elie Wiesel

Vampires And Castles

The most amazing place I ever visited was someplace I would have never gone on my own. I spent two weeks in rural Romania for work, but the weekend trip into the mountains of Transylvania was spectacular. Part of my awe came from the contrast to the stark scenery on the rest of the trip in one of the poorest countries in Europe, but that wasn’t all of it. The other reason for the awesome trip was the people I met.

I arrived in Bucharest alone, my first trip to Eastern Europe. I’d grown complacent with travel in Western Europe where people spoke English and getting around was easy. My team, in Podari ahead of me by a few days, sent me a note: bring cash…lots of it. Their American credit cards weren’t working. Unfortunately, by then I’d already left the Bucharest airport with just what I needed to get the 200 km to meet them. I made my way to the train station with the first of many cab drivers who didn’t speak a word of English. I later learned that knowing Russian would have helped me, not that it mattered to learn that. Once at the station. I spent a nerve-wracking five minutes trying to communicate with hand gestures that I needed to go to a small prairie town by way of a second class ticket, to preserve as much of my precious cash as possible. I was eventually successful, guaranteeing that I would spend the next three hours traveling with average Romanians. I moved into the station to find a place to wait the hour for my train. The only place that looked comfortable, or even safe, was the McDonald’s–bright, well-lit, and cheery. I nursed a Coke for most of the hour until I realized that I’d better find a restroom. Turns out this was the only McDonald’s I’ve ever been in without one. I left in search of a WC sign, finding one at the top of some narrow steps into the basement. The tiny restroom was all that was down there: dark, dank, and cramped. It cost me a pittance of my precious cash, but there was no choice. It was the second worst restroom I’ve ever used in my life, just behind a filthy hole in the floor in an unlit closet in a government building in remote China. I finished as quickly as possible and boarded my train.

Though the car wasn’t crowded, an elderly babushka chose the seat right next to me. She wore a colorful scarf over her very white hair, which matched her very deep wrinkles. Her heavy black overcoat covered her dumpy frame, and hose-covered, thick ankles ended in sturdy black shoes. She attempted conversation with me right away, a futile effort. She was clearly disappointed as we settled back for our long ride. Proud of having navigated this far through the alien environment by myself, I settled in to read and watch the Romanian countryside go by. It looked amazingly like my native Kansas, with fields of sunflowers and grain elevators punctuating the flat land every 20 minutes or so. It was no coincidence that it looked like home; this was exactly the kind of place the agricultural company I worked for would locate a plant. After an hour of quiet, the old woman startled me by suddenly speaking to me again, quite animatedly. I was at a loss until, through gestures, I realized that she was lecturing me about crossing my legs. She pulled down one of her thick, woolen stockings and pointed at her varicose veins, chattering the whole time. She clearly didn’t want me to meet her fate. I sat with both feet dutifully on the floor until she got off on her stop 20 minutes later. I crossed my legs defiantly the rest of the way.

The work part of the trip was uneventful, beyond the unexpected September heat wave which made for uncomfortable sleeping in our un-air conditioned hotel, and one drunk taxi driver who decided to punish us with a 120 km/hour ride though city streets for some imagined slight. Another taxi driver who chased me down made up for him, however. I had left my fanny pack in his car. My passport, credit cards and phone were in there; I owe that humble man a lot. But the weekend trip to Transylvania was truly unforgettable. A colleague secured a van and local driver who spoke English. He was amazing: personable and passionate about showing us the best of his country. He succeeded. We saw castles and silver domed monasteries and gorgeous mountains and brightly painted gypsy carts next to campfires. It was truly magical. Our guide was a single dad who had lost his young wife to cancer. Quality health care was not available. Devoted to his young daughter, he had since fallen in love, but was working unsuccessfully so far to convince his prospective in-laws that he was a suitable husband. I have hoped for the five years since that he did.

He and the other Romanian people I met on the trip, while frustrated at their “lost 50 years” from Communism and the slow pace of reform since, were immensely proud of their beautiful country and their heritage. They should be. Some of the coolest things happen on the journey you’d have never taken on your own.

“How blessed are some people, whose lives have no fears, no dreads; to whom sleep is a blessing that comes nightly, and brings nothing but sweet dreams.” –Bram Stoker

The Power of Love

We now have three dogs. We never intended to have three dogs. We actually never intended to have two dogs either, but that’s a story for another day. Our newest dog, Lady, is another golden retriever, our fourth. The first three have been absolutely wonderful dogs; we had no reason to believe she would be any different. We had no idea, however, what she would really become to our family.

No one is exactly sure how old Lady is. Our vet estimates between seven and ten, and that’s consistent with her history. She belonged to the aunt of a friend for most of her life, until the woman passed away last year. Until then a doted upon only child, Lady suddenly became an orphan, at an age when that can be dangerous for a dog. Her late owner’s sister–my friend’s mother–took her in temporarily, but she needed a permanent home. My friend posted her picture on Facebook asking if anyone was interested in taking her; one look, and I knew we were doomed.

We didn’t say yes right away. Megan was still in the hospital in Cincinnati, being assessed for a bone marrow transplant, and we couldn’t really think about it then. But Megan’s somewhat sudden recovery also made Lady suddenly possible. I called my friend. “We’re not sure you really want her”, we were told. She sleeps a lot, is partially deaf, has repeated ear infections and a cyst on her eye…not terribly different from our 11-year old golden. “Two half dogs should make a whole” was my response…we’ll take her.

My friends volunteered to make the entire drive themselves. When you live in Minnesota, you’ll take any excuse to get 700 miles farther south in the winter. We coordinated a date for her arrival and waited. Megan solved the concerning problem of not knowing her birthday by declaring that her arrival date into our family would now be her birthday: December 29. Lady arrived to birthday cupcakes in her honor; she was home.

Lady has spent the weeks since her arrival settling in. The three dogs moved from suspicion to truce to the affection of buddies. The humans, however, have been fond of her from day one. She’s a sweetie…mellow and well-behaved. But none of us took to her like Megan did. From that homemade cupcake on her first day here, Megan has doted on her. Her affection has been returned. Lady follows her everywhere, sleeps at her feet, is sad when she leaves. I don’t know if Megan’s recent ordeal has anything to do with their bond, but they seem to need each other. As Megan observed, they’re both even growing their hair back out together, after Lady’s trim to remove the mats in her thick fur.

It wasn’t an easy decision to take a new dog into our family, especially at her advanced age and after the overwhelming stress we all just passed through. But love–the fundamental belief that every creature deserves it, no matter their circumstances–won out. Just one more example of the incredible power of love and what can result when you give in–with faith–to its power.

“If nothing saves us from death, at least love should save us from life.” –Pablo Neruda

Who Will Be Me?

Jamil Mahuad, the ex-president of Ecuador who brought peace with Peru, said we are each obligated to be our unique selves. He believes that everyone has a couple of things in life that only we can do, and if we do not play our part, then who will?

What a wonderful thought! It’s reassuring that it’s ok to be myself. At work, at school, at home, we all face constant pressure to fit others’ ideas of who we should be. This pressure is manageable for most of us most of the time, but it drains our energy, whether or not we give in…and we all do at times. At one point earlier in my career, I actually changed the way I dressed to the “team uniform” of khaki pants and denim shirt, in a futile attempt to fit into a cliquish group. I know how ridiculous that sounds now, and it didn’t work. Some of you may remember me then…did I seem happy? I wasn’t again until I moved to a team which allowed me to be myself, though the new group had spectacular problems of its own.

But Mr. Mahaud’s primary point is truly awesome: it had never occurred to me that there’s a short list of things which I, and only I, am supposed to accomplish. What a wonderful discovery process I have ahead of me to find them! At mid-life, I have my suspicions by now as to what a couple of them may be, but I’m also guessing that some of them are too far down the horizon yet to see. We all want to make a difference, and we all need hope: hope that tomorrow will be better, hope that our failings can be turned around. My hope is that I have a unique purpose…things that I’m supposed to do that matter somehow. I simply need to focus on being the me that I am supposed to be.

“To thine own self be true, and it must follow, as the night the day, thou canst not then be false to any man.” –William Shakespeare

Welcome

Welcome. It’s a word I’ve used too much lately, because it means someone new is joining the exclusive, online community of those who love someone with HLH. As one of the members put it, it’s the most wonderful group you never wanted to be a part of. I distinctly remember the jolt of welcoming the next new member following Megan’s somewhat sudden recovery. My surprise was absurd, of course. I was still in the self-absorbed stage I’d moved into to marshal all of my resources toward my daughter’s survival, and it hadn’t yet occurred to me that the world outside would continue on its own course. It was sad to realize that others would be following the path we had so unwillingly blazed.

My next surprise was how much help I could be to the newcomers, from my own crash course in HLH diagnosis and treatment. Though I realize that HLH is exceedingly rare–maybe 100-200 new cases in the U.S. each year–it was still alarming how much ignorance and misinformation new patients and their families face with their doctors. Don’t they all have at least the same access to the hundreds of HLH links I read on the Internet? While I hesitate to play doctor, I have gotten quite comfortable providing new patients and their families questions to ask and encouraging them to play a strong advocate role in their medical care. The stakes are high, and the combined medical knowledge of our community rivals that of all but a handful of HLH specialists in the world. I’m sure each of us would willingly give up that knowledge to return to the time we’d never heard of HLH.

The best part of our community, by far, is the support we provide each other, though most of us will never meet. These are people who always understand, who know the intense hopes and fears of loving someone with critical illness…marathon illness, which takes months or even years away from home, from work, from family. People who know what it’s like to celebrate holidays in the hospital. People who don’t get tired of us talking about blood counts and scan results. People who provide empathy when we just need to vent, because they remember when doing the same saved their sanity. It’s a global community of souls…from Croatia, South Africa, Canada’s Northwest Territories, Australia, Arkansas. I look forward to the day when a cure means no more new members. Until then, welcome…we are here for you.

“Each day holds a surprise. But only if we expect it can we see, hear, or feel it when it comes to us. Let us not be afraid to receive each day’s surprise, whether it comes to us as sorrow or as joy. It will open a new place in us, a place where we can welcome new friends and celebrate more fully our shared humanity.” –Henri Nouwen

Snail Mail

I received three unexpected pieces of snail mail from friends over the last few weeks, each of which made my day. I had forgotten the joy that mail used to bring before email and social media made it nearly obsolete. I don’t want to forget again.

Don’t get me wrong, I’m grateful for social media. It’s allowed me to reconnect with friends who’d slipped away, and to stay connected to others thousands of miles or oceans away. I am sure most of these dear people would have stayed part of my past before today’s technology. Instead, they remain in my life, even if in only in small snippets. Many of them still make me smile just by being them, exactly why they were part of my life in the first place.

In spite of the positives, we gave something up when we moved away from letters. A Facebook post is like a piece of hard candy…short and sweet…while a good letter is far more substantial. It proves that someone thought enough of you to take the still short but meaningful five or ten minutes to dig out pen, paper, and envelope, and sit down to compose their thoughts. Lately, I’m increasingly nostalgic and grateful for the holes, large and small, filled by so many people in my life. They are worth so much more to me than the 49 cents and ten minutes a letter would take. I believe I will start taking that ten minutes a month to begin thanking them, one at a time. It will take the rest of my life; I have a large debt to repay.

“Without ’tis autumn, the wind beats on the pane,
With heavy drops, the leaves high upwards sweep.
You take old letters from a crumpled heap,
And in one hour have lived your life again.” –Mihai Eminescu

Happiness

I’ve believed for years that my happiness is driven primarily from within. I’ve known it just as firmly as I know that eating broccoli is good for me. Except that I don’t eat broccoli. I’ve known it, but I haven’t lived it.

This relearned lesson has hit me particularly squarely these last few weeks, as we’ve been returning to normal following Megan’s illness. Amazingly, I’d been able to find an unexpected peace in the middle of the nearly overwhelming fear and stress, a peace I’d never known except during times of great happiness. When your life is stripped down to the bare essentials–faith, and an intense focus on the here and now with those you love–the small daily stresses fall away, and joy can be found in nearly any moment. In fact, the strongest sign that I was emotionally recovering was, ironically, that the daily frustrations were back. I was not happy with their return.

As I’ve resettled into my life, I’ve marveled at how I lost this daily stress during the toughest period of my life. It is no great mystery how: I was focused on what truly mattered, and so much of what makes us miserable simply doesn’t. I think we all know this on some level, but it’s so easy to forget. Well, I don’t ever want to forget again. What a huge loss it would be to lose this hard-won lesson and be less happy now that we’re all home…together, healthy…than when we were living in the hospital. My family deserves better. I deserve better. I will let go of the small stuff. I will seize happiness from the jaws of distress.

“It is not easy to find happiness in ourselves, and it is not possible to find it elsewhere.” –Agnes Repplier