Monday, February 23, 2009


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.

Saturday, February 21, 2009

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.

Tuesday, February 17, 2009

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?


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.

Saturday, February 14, 2009

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.