I’m one of the luckiest people I know.
People who know me, would think it’s crazy for me to say this, and would never use “lucky” to describe me. I have multiple chronic, invisible illnesses. I have my low times, and yes my low times get really bad, but I always pull through. If I were not medically challenged, as I like to view it, I wouldn’t have had the chance to gain perspective as well as different experiences. My life due to medical challenges is at times a series of misadventures, twists, and turns. I have learned that fun can be had in almost any situation and location.
Many teenage girls are not close with their moms, but I am the opposite. My mom is one of my best friends, and while this is probably not cool to say as a teenager, it’s true and has been made possible by circumstance. I’ve spent a lot more time at home then most teens because of my medical challenges and am homeschooled currently. My mom and I have traveled together quite extensively. I’d like to say we traveled for pleasure, but no, we’ve traveled all across the United States for doctors and at times looking for Wally. Spending this much time with one’s mother, could have been horrible, but lucky for me, it brought my mom and I closer together. I wouldn’t be the person I am today without her influence. I attribute my positivity to her and my ability to make the best out of whatever hand life deals me.
Now, back to Wally. My mom and I were in Virginia because I needed a specialized surgery. One thing you need to know about us; we have no sense of direction. And that’s an understatement. We get lost with a navigation system. So trying to get around a new city for over a month was extremely challenging. Oftentimes we knew landmarks because we had been lost there before. One day, while being lost and driving in what seemed to be endless circles, my mom offhandedly said, “This is like trying to find Wally!” When I corrected her and said it was “Waldo” like in the children’s book, without missing a beat, she replied, “ Everyone is looking for Waldo, that’s why finding Wally is so much harder”. We were in hysterics and at that moment Wally was born. Wherever we are lost, which is very often, one of us always brings up “looking for Wally”. Or when we see someone wondering around, who looks lost, we know they too are looking for Wally. We have even created an entire backstory for him. Wally is Waldo’s shy cousin who is always hiding, usually in closets, which is why he is so elusive. We are always on the look out for Wally in hopes of helping him “out of the closet”.
When not looking for Wally, we are often searching for the perfect hotel room to stay in when on our medical trips. In one hotel in Rhode Island, we changed rooms 4 times in 4 days, before just leaving the hotel for another hotel all together. The room I hated the most, was right next to a Catholic Church, which meant church bells tolling all the time. If Wally had been hiding in the closet in that room, he would have left in a hurry. As if the bell wasn’t enough the room was tiny, and calling it tiny was an understatement. There was barely room to walk between the bed to the wall, and even Wally would have been claustrophobic if he had tried hiding in that closet. It was my mom’s birthday, so my dad sent my mom an extremely large bouquet of roses. While the arrangement was beautiful, it was very, very large, which meant not only finding a place to put it in our tiny room, but also lugging it with us every time we changed hotel rooms. Of course, we would have given the vase of roses to Wally, if he had showed himself. On other medical trips we would change hotels based on the television stations they got or didn’t get, or what shopping malls were close by and once because we needed more space and found an “all suites” hotel. We gave a new meaning to the term “wandering Jews”.
My mom is one of those people that can make anything into an adventure; even being in the hospital and luckily, I have learned to make the best out of my hospital stays. The smell and sounds of the hospital are very familiar, and I have learned to ignore the beeping sounds of the monitors just as well as the nurses do. And while being in the hospital over a holiday isn’t on the top of anyone’s bucket list, I have learned how to make the most of it. Not many people can say they have partied in the Pediatric Intensive Care Unit, but I can!
None of my hospital or sick friends would be considered lucky by the standard definition of the word. But for all of us we know it could be worse and we know all we have is our attitudes and the ability to play the hand we have been dealt to the best of our ability. I am lucky to be here. I am lucky to be the person I am today, and I wouldn’t be that person if I were not sick. I am lucky to have the opportunity to become an activist for my community. I am lucky to have the special relationship I have with my mother. Most of all I’m lucky that I have many more misadventures to come.
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4/16/16
This is an old post, but still incredibly relevant as it seems things are coming completely full circle. Here we are back in Virginia, still having misadventures, searching for Wally, and celebrating my mom's birthday! While so much has happened in four years, and not all positive, I can truly say my mom is still one of my best friends. She gives me life advice - whether appropriate or not and fights for me/by my side nonstop. Nothing I can say or write (ever, not just because of cognitive issues) will be enough to say how much I appreciate and love her, but this throwback post is a good summary.
Everyone who knows my mom can attest to her wittiness, kindness, genuine-ness (is this a word? no? well it is now), and compassion. I would not be the strong feminist I am today without her influence and I would not have the outlook on laugh I do without her. I guarantee without her there would be many more tears instead of laughter.
Happy birthday Mom. Here's to many more :) Love you!
Xoxo,
Sick Chick
