Courage

You know... it's interesting. People tell me sometimes that I am "inspiring" or "amazing". I scoff at those words because really, I am just me. The things that actually define me at my core have nothing to do with the fact that I have an incurable illness... and now it appears a neurological disease, also incurable, 'cause that's just how I roll.

Today, however, a friend for whom I have great admiration, used the word "courage" in reference to me, and I decided it fits, though not in the typical heroic or poetic sort of way.

It's more about finding the strength to do what needs doing while trying not to care about insignificant things like toys on the floor or laundry that needs folding. It's about getting out of bed in the morning and facing the litany of symptoms and suffering instead of wallowing in them. It's about showing up wherever I'm supposed to with a smile on my face, pretending to feel good and pain-free all the while looking like death warmed over, ignoring the whispers and even making jokes about the "you look horrible" comments. It's about not allowing self-pity to exist even when the pity party people show up on a daily basis. It's about finding the strength to keep on fighting even when I know for sure it would be easier physically and emotionally to curl up in a ball for awhile.

None of those things is really all that incredible... but I think each of them requires a certain amount of that everyday kind of courage we all have to call upon from time to time. I, however, have to keep it on speed dial these days.

The Power of Friendship

"When we honestly ask ourselves which person in our lives means the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand. The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing, not curing, not healing and face with us the reality of our powerlessness, that is a friend who cares."
~Henri Nouwen

I believe that friends come and go and that each one enriches our lives for a reason, a season, or a lifetime. I came across this quote earlier and immediately thought about one of my "lifers". While I have many friends, she's the one who has been a constant in my life for over two decades, and when I think back to the times when I've felt powerless, I realize that she has always been present in those moments.

We met in college as sorority pledges. We clicked instantly and soon realized we had a class in common. We spent the semester hanging out together both on and off campus, completing sociology assignments and projects collectively... and finding out that we had very similar interests, taste in music and clothes, ideas and goals. Eventually we became roommates in our junior and senior years of college as well as after graduation.

When I was twenty-one I watched my father die a slow and painful death. Many days, K came with me to visit him so I didn't have to go alone. She never really knew my dad prior to that time and he was often unable to speak, but she would engage him and elicit his smile every single time. She would take stock of the fridge and pantry and slip out to the grocery store for us. She made tea... lots and lots of tea. On the night he died, she was the friend I called at 3:00 in the morning to tell. She cried with me on the phone. She didn't say much of anything because there was nothing to be said... but she was there, present in my powerlessness. She also made phone calls to several family friends to tell them the news and about the funeral arrangements. Years later she told me that was one of the hardest things she ever had to do, but she did it anyway.

We've held each other's hands and hearts through deaths of family members, friends, and even dreams. We've seen each other through family crisis, childbirth, medical emergencies and scary illnesses. There have been times when we've waited on news together, nervously sipping tea, listening to the deafening silence until the phone rings. We've been each other's biggest cheerleaders for races, contests, job hunts, parenting, and so much more. We've bent our ears countless times when the conversation opener is "get this" or "I don't know what to do". I simply can't imagine K not being my go to girl. She is the godmother of my first born and, in my will, is named the legal guradian of my children. I suppose that would render her present in the ultimate moment of powerlessness.

Of course there are endless happy memories ranging from beer slides to vacations to girls' nights out and parties. In the summertime we sit by her pool and drink margaritas while reading trashy magazines. We can go for hours without saying a word to each other yet walk away feeling as though it was the best day ever simply because we had the opportunity to just be.

After we graduated from college, K lived in many different cities. In fact, for most of our friendship, we've lived apart, which is proof positive that physical presence is not the most important part of true friendship. That said, you can imagine how overwhelmingly happy we were when, three years ago, not so coincidentally, she moved a town away from me.

The other day I had to tell K about my most recent serious medical struggle at a time when she, herself, is facing a severe back problem as well as some family issues. It was the first time I can ever remember both of us being the walking wounded at the same time and that neither one of us could do the other a damn bit of tangible good to help ease our situations. The thing is, though, that it is an excellent reminder that it's really not the physical acts of kindness that define friendship. If she still lived elsewhere, I'd still call her first each day with my health update and to seek hers. I'd still text her the thoughts that really go through my head instead of the cleaned up and coherent ones I save for the general public. I'd still be able to laugh at us sharing our stories of our recent "break-ups" with our respective doctors and simultaneously yelling into the phone "you can't ever go back!", a mantra we had in college with regard to dumping boyfriends.

So it seems that K and I are both powerless in our situations now and powerless to physically help one another through with the usual gifts of meals or childcare or wine and chocolate. However, the love and support we extend to each other on a daily basis magnifies a thousand fold in times like this. I can't give her advice or solutions or a cure, nor can she give those things to me... but I can be present for her, as she is me, and, at the end of the day, that's really what the power of friendship is about.

That, and sharing a good cup of tea.

Value Added Friendships

I feel like writing but my thoughts are random and disjointed right now so I'll just go for a stream of consciousness post today.

I've been pretty seriously ill lately and it's a great reminder of how wonderful my friends are. At the end of the day, I have a roof over my head, plenty to eat, an amazing family and great circle of friends. I am truly blessed despite my medical demons. I have known for a long time that life is neither fair nor equal and I am at peace with my situation. We all have crosses to bear and the best we can hope for is that we can learn from both our individual and common experiences.

That said, I am exceedingly sad for and disappointed in people who can't be bothered with extending even a single kind word to me, and therefore, I would assume, act the same way towards others with whom they come in contact. I've done nothing to anger these folks or warrant this behavior. I honestly believe people like this don't even realize how selfishly they are perceived by others who aren't like that. However, the tragedy of it is that they have no idea how much joy they are missing. The ability to bring sunshine to someone's life is a gift that ought to be experienced time and time again by each one of us.

It's probably silly and childish on my part but, frankly, it bugs the snot out of me. I'm not making much sense without being specific. One very minor example comes to mind. Let's just say that you have been feeling so sick that lifting your head off the pillow in the morning is a major accomplishment and that days on which you actually are up and about and trying to find a sense of normalcy for a few hours no matter how bad you feel seems like a major victory. Now let's say you knew many people who raced over the weekend. Despite feeling crappy, you made the effort to look at each one of their results and extend a congratulatory message. Now let's say that of that group only one seventh of them had the decency to respond with a "thanks". Do you know that it takes less than two seconds to write that word and less time to utter it?

Meh.

Unfortunately, it's a pattern of behavior for many and I am a believer that, with few exceptions, people don't change. The problem here is, in fact, not with other people, but with me. I have accepted it. I've sometimes allowed myself to be treated in ways that I'm not really OK with. Obviously the example above in isolation is not a deal breaker, and you certainly can't mandate manners, but I find that frequently little things like this are very telling of the thoughtfulness and respect, or lack thereof, people have towards others. There is an air of self-absorbedness there that is completely foregin to me and the truth is that I don't ever want to be like that and I don't ever want to become so immune to it that I think it's just dandy to treat others as such.

Up until now I've just sort of shrugged off some things as "they are what they are" situations and, truth be told, the actions of people beyond my inner circle have little effect on my life; however, right now, in the midst of phsycially suffering through each day with not much to lift my spirits other than the kindness of others, I have realized that it's time to cut the dead weight. People who do not add value to my life are no longer welcome in it.

Hearts and Flowers

I think the notion of romance is interesting. We each have our own definition of it, yet there are certain acts that are deemed romantic on a more universal level. Lately I've been thinking about why that is.

I can't define romance for myself, but I can pinpoint some very romantic moments in my life. I've been proposed to, and while wonderful, exciting, and absolutely breath-taking, I can't actually say it was the single most romantic thing I've ever experienced. Don't worry, though, Prince Charming would actually agree with me on this point, so this won't come as news to him.

I'm not sure I even know what my most romantic moment to date is. There are several that stick out in my mind. I was going to write that romance often had to do with planning but, upon further consideration, I don't believe that's the end all be all, either. Often, spontaneous remarks or acts are incredibly romantic. So, is universally recognized romance the result of a declaration? Passion? Thoughtfulness? Maybe it's all of those things, but the more I think about it, the more I am convinced that one of the key ingredients to romance is the element of surprise. It's catching someone off guard by doing something that's completely unexpected, and maybe even just a little out of character. Roses on Valentine's Day? Cliche, no thank you. Roses on September 3rd "just because"? Much bigger bang for your buck, though, frankly, this princess doesn't like receiving things that die. I'd rather have something pretty and full of lycra and spandex... and I believe that knowing someone intimately enough to know a fact like that plays into romance, too.

When I was in college, I met a boy who I believe was fairly confident in the "women want me" category. He definitely didn't seem particularly commitment-minded and, while there were many girls he hung out with, I didn't know him to have a girlfriend. In his defense, he was very attractive and had a knack for making girls giggle. However, many of my laughs, at least initially, came at those girls' expense as I watched them throw themselves at him in the hopes that he'd glance in their direction from time to time.

As time went by, he and I spent more time together. The truth is, though I never anticipated our shenanigans would lead to anything more, I ultimately enjoyed his company very much. He was a really good guy, and I saw through all of the typical college dude bravado. He was smart and had a depth to him that was incredibly hard to come by among the men I knew at school. I appreciated the fact that on Thursday nights out at the bars, no matter what cute-but-sloppy-drunk girl was hanging on him at the end of the night, he still made sure that I had a safe way home with our friends, the shuttle or, sometimes, his car.

One night, I said my good-byes and headed out a little earlier than the rest of my crew. I walked across the street to the campus shuttle stop and waited by a huge light pole that sat atop a waist-high concrete block. Shortly after, the boy in question appeared. He said nothing but picked me up so that I was standing above him on the concrete because, in his words, I deserved to be "placed on a pedestal". He proceeded to explain that he wanted to go out on a date with me, a real date, not the usual talk to me over the music and buzz of the campus bars... and then go on more dates. He wanted to meet my mother. He wanted tuxedos and black cocktail dresses, fancy dinners as well as quiet nights with pizza and wine, trips to the zoo because he knew I loved animals, he wanted to see me ice skate, to go on a road trip together, to hang out at Great Falls... and so much more.

Needless to say my first thought was "what in the hell have you been drinking?" (I confess, it is possible that, through the grace of connections with bouncers and incredibly awful fake IDs, we had indulged in a cocktail. Or two. Or thirty.), but I refrained from saying it out loud. However, as his words started to sink in, and I determined there was a level of sincerity there, that there was a shred of truth to it all, I realized how unbelievably romantic the whole scene was. It was totally unexpected, completely out of character for him, as far as I knew, though he would ultimately prove me wrong on that, and every single thing he said showed me how much about me he actually knew and understood. He had listened.

Hook. Line. Sinker.

He became a fixture in my life for quite awhile after that night; our time together ebbed and flowed, but there was a connection there, even when we went through periods of little contact. Eventually, he graduated and moved to New York, while I was still in school. Once there, he continued with occasional romantic gestures, including "just because" notes, cards, phone calls and even flowers. Once, he drove to Maryland from NYC, arriving at 1 a.m. to surprise me so we could hang out for a little while. Literally... a little while... like a couple of hours. I was outside playing lacrosse on fraternity row when he arrived (what else would I be doing in the middle of the night on a Friday in college?!). I heard him calling my name from across the green. In my head, that moment plays out in slow motion as I dropped my stick and ran to hug him.

Eventually, he settled into his life in NY and I mine in DC, and, as it does, the universe dealt each of us the hand it was supposed to. Fortunately, I've experienced many amazingly romantic things in the years since that night on a lamp post in front of the 7-11, but this one still stands out as my earliest recollection of something so unexpectedly touching.

And so it seems that I have not yet solved the mystery of defining romance, but I do know how to recognize and appreciate it in the moment.

The Solo

I vowed I would never sleep in a parking lot in order to enroll my child in preschool. I always felt that was rather ridiculous. As a former teacher, I know what's truly important in those preschool years and there are a whole lot of places, including my family room, in which that type of learning can take place. I found perfect preschools for all three of them and never once stood in line to register.

I must confess, however, that this year will mark the first year in many that we will not sleep in a parking lot to register Exhibit A for Mrs. M's dance class. Mrs. M has been teaching ballet for thirty years. Her philosophy is that she builds little girls, and then she builds dancers. For the little ones, each of her classes starts with circle time. Eventually, this evolves into "girl talk". Don't tell the dancers, but it's really the same thing, they just feel more grown up about not sitting in an actual circle. She asks each little lady to share something special with her... something about her day, a success she's had at school or elsewhere, a special treasure she's brought with her to share with Mrs. M. As she converses with each of them individually, she makes them mindful of their manners, asks them to speak up and use good eye contact and models active listening. She teaches them early on to thank her for the class before they leave and to extend that courtesy to all of their teachers... and the world beyond. She thanks them, too, for their enthusiasm, a job well done, for loving to dance.

The day after my friend's daughter's first class with Mrs. M, she woke up and made her bed because Mrs. M told her class that it's good to help mommies. She was three at the time and now, at 6, has made her bed every single day since then.

When Exhibit A struggled with some body image issues I talked to her but could tell she thought I was just giving the required mom speech. I enlisted the help of a gal pal who Exhibit A adores and who, coincidentally, was a dancer, and I asked our pediatrician to mention it in passing at Exhibit A's check up. It wasn't a huge deal. It was a few tears shed over a comment someone made that was benign, but she misunderstood it. However, I don't ever want body image issues to rule her life and I felt very strongly that I wanted to nip it as soon as possible. I still felt, though, that Exhibit A wasn't really internalizing all the things we were saying, so the thought occurred to me: call Mrs. M.

"Mrs. M... I am struggling with something and I was wondering if you could help me. I know you've probably dealt with this many times with some of the older girls..." and I went on to explain.

Her response? "Thank you so much for sharing that with me. I'll handle it."

And she did. I don't know exactly how, though I have a general idea... I don't know when... but it became a non-issue.

Mrs. M is so popular that getting into one of her open school classes requires careful planning and a willingness to brave the elements. Registration is held at 8 a.m. on a Saturday. People start lining up Friday afternoon. The line winds around the building and then some. People bring movies, snacks, cards, grills, coolers and settle in for the night. The kids love it. The parents complain bitterly, but you bet your sweet bippy they wouldn't miss it. At 6 a.m., Mrs. M shows up with donuts, for she knows that the crowd is there for her and, in all her humble graciousness, she wants to thank them for their love and support.

This year marked Exhibit A's first year in company and, as such, we will forego open school registration. She'll simply audition her way back into whichever companies wish to have her. I can't say that I'll miss the parking lot experience, but it does feel somewhat like the end of an era.

As I mentioned in "The Smile", it was recently parent watch day at each one of the seven classes Exhibit A takes. While most teachers just show you what happens in their classes on a weekly basis, Mrs. M approaches things a little differently once the girls make it into company.

At the beginning of the year, she informs them that they are to select a 3 minute piece of music and choreograph a dance to it. They are to find their own costumes and practice their dance until their feet feel like they might just fall off... for she will be requiring that they do their first ever solo and they will have no direction from her. They are to take the knowledge they've gained from her and other teachers throughout the years and shine.

Exhibit A asked me to burn a CD for her. That's the only thing I ever heard or saw of this endeavor until last week.

At parent watch day, which for Mrs. M took place over two consecutive classes in order to have enough time, each dancer performed her solo that was 5 months in the making. Parents and special friends were invited, and the girls' company big sisters came out in force to support the girls. Each one performed her dance and then Mrs. M provided feedback of her own before asking the dancer's parents and big sister to comment, then other company members were invited to to chime in with their thoughts.

Exhibit A is not the nervous type. She took the stage with the confidence that I've grown accustomed to over the years. She smiled and announced her name, age, school and provided the title and composer of her piece of music and then, she began to dance. I was awestruck. In my wildest dreams I never imagined it would have looked the way it did. I couldn't believe that she had choreographed and rehearsed this alone, in her room, in between dance classes, flute practice and maybe even doing some homework. I had, of course, known that she had come far as a dancer, but that was under the direction and choreography of her teachers, in their classes, on their stages... a far cry from "find music, create a dance, dance". It was beautiful and inspiring. Afterwards, Mrs. M told Exhibit A how proud she was of her. Exhibit A was the only dancer about whom there was no constructive criticism, just a long list of positives about the use of space, making her movements match the tempo, and owning the stage. Her big sister's comment was that even though the music was repetitive, Exhibit A chose different choreography for each refrain to keep it interesting. I was so proud I thought I might pop. My comments reflected that. Immediately afterwards, Exhibit A asked me to burn a song onto a CD for her. She's already starting to work on next year's dance.

The solo was an important moment in her development as a dancer. For me, though, it was an opportunity to see that my child not only has a passion, but also a gift.

The Vault

Last summer I went to see HeWhoKnowsAllThingsAboutBikes (HWKA) for a fitting. I didn't like the way my new frame was feeling and asked him to take a look. As I wis sitting in the saddle, just pedaling away, he posed this question: "I don't know anything about (insert name of incurable illness here). Can you explain how it affects you?"

Dumbstruck, I smiled and, once I could utter something that sounded sort of like speech, I thanked him for being so direct. It's very rare that someone is. This doesn't mean I found it even a little bit appropriate, but I still appreciate the fact that he wanted to know the real deal instead of relying on he said/she said or filling in the blanks with intrawebz mumbo jumbo.

I went on to explain it to him in a matter of fact sort of way and, in the end, he talked to me about some related things and it was a good and meaningful discussion. No harm, no foul, but I'd be lying if I said my blood wasn't boiling at the thought that someone betrayed my trust and felt the need to share such private information of mine with him. I operate on a need to know basis. It doesn't affect him. It's not really any of his business. I don't train with him, so there's no chance I'm going to have to bail on him when my health is compromised, I don't have to rely on him for childcare or carpools... so in my book, he doesn't fall into the need to know category. Don't get me wrong. I *heart* HWKA and consider him my friend, but I have lots of friends whose friendships are such that it is simply a non-issue and, therefore, I treat it exactly that way.

My dearest friends understand that this is something I hold close because I never, ever want to be defined by a medical condition. It is an unwritten rule that if it is to be shared and discussed, I am the one making the disclosure and engaging in the dialog, for this is not something I want tossed around amongst the PTA moms in their hushed "how sad" tones, and I certainly don't want to hear rumors about myself amonsgst the people with whom I work. I am not naive, and I understand human nature, but I'm ever hopeful that the people in the outskirts of my world can respect me enough to rise above that, for I've seen firsthand that the ones who care most about me can.

I do not begrudge my disease. In fact, I am thankful for it. I know that sounds rather ridiculous and maybe even a little trite, but a long time ago I had to accept it as absolutely perfect. For in not doing so was to accept defeat and resign myself to a life of "what could have beens" instead of "what will bes". I had to learn to redefine "normal", and living with it has, in some respects, made me learn how to live. I am reminded on a daily basis that life is too short to be angry, petty or to harbor resentment. I'm reminded to love without limits, tell people how I feel, live without regrets, find my passion, and appreciate the little things in life. I do not get caught up in negativity, gossip or drama, for I have learned that when there is a limited amount of energy, wasting it on other people doesn't make any sense... not that it ever really does, but, sadly, many people don't understand that. Instead, I try to spend time every single day doing something for others, be it a planned act of volunteerism or a random act of kindness. I've learned never to take myself too seriously and that laughter is not only life's loveliest music, but also the greatest medicine there is.

My circumstances have made me a better friend than I might otherwise have been. My circle is my rock. They have taught me what unconditional really means. We can laugh and cry and finish one another's sentences all, seemingly, at once. I have earned two nicknames amongst these women. One is "Peanut"... as in no comments from the peanut gallery. I guess my condition has allowed me to break down some walls and say exactly what's on my mind. I earned that one when my friends realized that I was gonna call 'em out when they were f*cking up whether they liked it or not. They also call me "The Vault". I am the friend that you can trust with anything. I'll never tell. This is not always easy for me because Peanut wants to yell out RED FLAG! RED FLAG! in public sometimes, but The Vault never will... instead I'll save it for private moments such as "Can I get you a red flag? Erm... I mean some red wine?". It's pretty simple, really. I believe if someone tells you something in confidence, you keep it to yourself. If you read closely above, you may recall I don't do gossip or drama. I am fiercely protective of my family and friends. I want... need... them to be protective of me so that I am not at the center of soccer mom chit chat, so I'm not caught off guard while simply trying to get a bike fit, or so I can continue on with the success I've found in a profession that I never knew I would actually enjoy so much.

My point is this... I wouldn't wish my condition on anyone... but the lessons I've learned from it have been invaluable. I don't define myself by this single aspect of my being and I wish others would learn to be The Vault and appreciate my desire to live as normal a life as possible. I don't want to be labeled "the sick chick" and, while I want to inspire others, I want it to be because I write something that touches them, or because I do something admirable, not because my body wants to rebel against the SOP and it makes for good coffee talk. I guess it comes down to the fact that I know the me that is at my core, the me that has nothing to do with doctors and medicine, the me that others sometimes miss because they are so focused on giving an illness a life of it's own, the me that's... well, just cranky, sassy, silly ol' me.

Sticky Situation

Dear Young Miata Lady,

I understand that the stick people stickers were trendy... little stick families and little stick pets all in a line, hanging out on rear windows. It's not my style, but to each her own.

However, for the record, if you wish to secure a date, I'd advise against the "family" status of one stick woman, presumably you, and 4 stick cats that you're rockin' on your teeny tiny rear window. I suspect it might suggest to would-be suitors that someday you might just be a crazy old lady with lots of cats.

No need for thanks, Sweet Pea. I'm a giver like that.

Your Pal,
The Cranky Princess