Tag Archives: Muscular dystrophy

Idaho? Oh Balls.

7 Jun

The last time I started a new school I spent a good amount of time crying and begging my mom to let me be home schooled. This time I was out of tears. I had spent over 2 weeks crying. September came and I had resolved to attend school without protest, but also to make no effort whatsoever to make new friends. Which proved to be quite easy since all the girls seemed more interested in mocking my clothing, hair and make-up instead of getting to know me. I’ve never been a “blender” and decided to keep my identity. I wasn’t going to change myself for these vapid girls.

 

Just like every high school there were the obvious groups, except at Meridian High School they all kept to their own clique. There were the jocks, the nerds, the punks, the pot-heads, the emos, the pretty girls, the juvenile delinquents, the choir kids, and the band geeks and the drama freaks. I couldn’t find a place among any of those groups if I wanted to. I’m not athletic, I’m intelligent but not nerdy, I didn’t smoke pot, I didn’t wear black and listen to punk music, I wasn’t bound for prison, I was pretty but would rather pluck out my eyelashes than hang with those pretty girls, I wasn’t in choir, I didn’t play an instrument and I had no desire to make friends with the up-beat drama freaks. No, I was determined to mope about at home, stay depressed and just get through the school year. And I was sure about 1 thing. I would not make any friends, because in a year or 2 I would have to say goodbye. Because that’s how my life went. I’d settle in, make great friends, form a life I loved, and then I would be uprooted and have to start over. Well if I never started, I’d never have to start over. In my head, that made sense. (Yes, I would have emotionally fit in with the emo kids.)

 

I did pretty well when it came to not making friends. My health wasn’t exceptional so I missed school often, and if you don’t talk to a person they don’t become your friend. The only time I struggled was at lunch time. I used to have such a good time with all my girlfriends in Lake Stevens at lunch. We’d sit together, laugh, share food, gossip… Now I had 30 minutes of being alone with my food. For the first few days of school I ate in a hallway, sitting up against a locker, but people talked to me. Mostly outcast freshman, I didn’t want company. So I took my lunch elsewhere.

 

For 2 months I ate in a stall in the girls bathroom. I know what you’re thinking, I think that too. Sometimes I would cry and sometimes I would finish eating and start on homework. Again, I am well aware of how bizarre this was as I was the one in there.

Btw, do you have any idea how many bulimic teenage girls there are in this world? If I had to guess, at least 25% of the girls in my high school were. I would hear girl after girl throwing up while I tried to keep my lunch down. And if they weren’t throwing up, they were shooting up, snorting up or generally getting effed up. Those girls I reported, I had to do something. I couldn’t just be the weird girl eating her lunch in the bathroom while criminal activity was taking place. I gave myself a higher purpose. I was an undercover cop busting girls abusing substances. Except without the cop part. And my cover was a bathroom stall. And I would just tell the front office after I was done eating and they had left.

One time when I reported some girls for drug use in the bathroom, the office woman asked me, “How do you always happen to be in there when they are doing drugs?” I replied matter-of-factly, “I eat in a stall.” She cocked her head to one side and frowned, “Oh child, have you no friends?”  I sarcastically replied, “Oh yes I do, I just have a sensitive bowel.” She was not impressed and that response probably discredited furthering reports.

 

Time passed.

 

In December I accidentally made a friend. Our teacher changed the seating assignments and I was placed by this girl who always gave me dirty looks. I don’t know why she did, I had never said a word to her. For some reason, she decided to talk to me that day. Come to find out she was completely unaware of her facial expressions. That’s just what her face does when she’s not thinking. We ended up having a lot in common and after 3 full months of staying mum, it felt nice to talk to someone.  She asked me where I sat at lunch (I avoided that question) and said I was welcome to join her friends. And so I did from that day on. (Years later I told her where I had been eating lunch before she invited me to eat with her. Immediately she looked puzzled, nearly sad perhaps, then she couldn’t stop laughing at me.) I had made a friend!  And soon I started making more.

I created a good circle of friends in Meridian, Idaho. But unlike in Lake Stevens where most were girls, I only had 1 girlfriend. Kim. She meant the world to me. She saved me from loneliness, sadness and all the other negative-nesses I was inflicting on myself.

We had a mutual love, Brownie Batter. (Yes, I was blonde for a while…)

 

The rest of my friends consisted of 6 teen boys affectionately referred to as “The Guys”, they were like brothers to me. By January I was happy with life in Idaho.

But as my general happiness with my social life started to rise, my physical health declined. It was declining so fast that by the last quarter of my sophomore year I went to school once a week to get assignments and spent the rest of my time in bed doing homework, resting so I could see my friends on the weekend. This period of time was difficult for me. The decline was so rapid that I had little time to adjust to my new limits. I frequently over did it with activity and would experience extreme pain, fatigue and occasional paralysis in my legs as my body tried to recover from the physical damage I inflicted up on it. I’m not saying I went out running or mountain climbing. I would pay heavy consequences for walking around the mall for an hour. It was hard to adjust to this new lifestyle of limits, physically and especially mentally.

My brother would stay home from school to take care of me on my bad days, as my parents could not miss anymore work. During this time my brother and I grew even closer than we already had been. I depended on him for so much. He’d bring me my pills, make my breakfast and lunch, he’d watch endless movies with me and tolerate my afternoon habit of watching Star Trek. And when I would lose the use of my legs, he’d carry me around wherever I needed to go. Even to the bathroom. He was amazing. Seriously, a girl couldn’t ask for a more perfect brother, or best friend.

 

Soon my regular doctor was unable to help with my pain management and became very concerned as my quality of life declined, so he referred me to a Muscular Dystrophy Specialist in Boise.

Enter the best doctor ever! He was dry and sarcastic, a bit of a tool actually, and slightly intimidating but had a soft spot for people with MD, especially children. He was amazing at what he did. He also introduced me to the community of MDA, thank God for MDA!

 

 

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Help me, Help her.

25 May

I’ve been feeling a sense of urgency to write but honestly I have absolutely no idea as to how I should approach this cry for help. Every time I sit down to write I feel overwhelmed with emotions. So many memories race through my mind and all sorts of ways to reach out to you come into my head. I’ve been getting so wrapped up in the words I should use that I’ve actually delayed this post. And this post needs to get out there, like a week ago. I’ve decided to stop thinking and to start typing. This may not be my prettiest or my most cleverly worded post but it is the most heartfelt and sincere.

Here is a little back story before I get to the point of this whole post.

I attended MDA (Muscular Dystrophy Association) Camp through my teen years and had the opportunity to form amazing friendships which are actually more like a family unit. To break it down further, we’re pretty much an underground organization of super heroes, but I am bound by oath to not elaborate. These friends were (and are) a source of community as I struggled through all the crap MD brought me as a child, teen and young adult. They understood my pain, suffering, loss, and every day challenges. They understand the frailty of life, they appreciate each day as if it was their last. Because it could in fact, be their last. They are MY people. And I love them.

Joining this elite group of kids exposed me to many opportunities for growth. We taught each other how to live with pride and how to find happiness in the hand we were dealt. We built each other up throughout the year and looked forward to that one week out of the summer where we came together and didn’t feel handicapped. It was all about us, and having fun. Camp holds a very special place in my heart, as do all the people who attended or volunteered that week.

With all the reward that came with knowing other MD kids it wasn’t apparent to me that this group had a down side. Most MD diagnosis’s come with a life expectancy. At age 15 I was given the number 21. I never put it together that some of my friends, these close friends whom I loved and admired, also had a number placed on them. I was 18 and being healed from the pains of MD when I experienced the heartache and grief that comes with losing a friend. I also felt an extreme amount of guilt. Why was God healing me and not my friends? I felt so guilty that I was pain-free throughout my body, while my friends were getting worse.

The first friend I lost to this disease was a best friend, 7 years ago. Her name is Cassandra and we definitely were a dynamite team. Her wit matched mine, her passion for life was like nothing I had witnessed before and seriously, nothing phased her. She knew her limits and plowed through them whenever possible, she loved adventure just like me. Her and I connected from the day we met, which was my first day ever at MDA Camp. We were bunk mates through the years and inseparable at camp. We continued our friendship through telephone calls, sleepovers and fundraisers. We were a team to be reckoned with! OK, we actually were just sarcastic trouble makers who enjoyed eating all the free pizza…. but we did raise SOME money. I lost Cassandra in 2005 and not many days pass where I don’t think about her. Where I don’t wish that there was a cure for what she had or that God would have healed her too, that I don’t wish I could have made it to her funeral, that I don’t wish I would have returned her phone call sooner. I was two days too late and kept getting her voice mail for a few weeks. It wasn’t unlike her to not check her voice mail, so I didn’t think twice about it. A close friend had to tell me over the phone of her passing. I couldn’t move, I couldn’t breathe. I feel the same sorrow now as I type this. I miss her. I miss her so much.

Soon after I lost Cassandra, I lost another close friend, affectionately nicknamed “Homie”. Homie and I met on my first day of camp as well. He was a “wanna be thug”, as I always told him. He’d wear his bandana and listen to (far too loud) rap music like he knew what was up. But in reality he was the softest, sweetest, most loveable guy I had ever met. We’d hang out when he was in town and I spent the weekend at his house with his family a time or two. I miss him.

Three years ago I lost another close friend, Matt. He was a jokester. He was fun and slightly mischievous. He also loved, no, was obsessed with trucks and race cars. He asked me to my first “Big Boy Dinner” at camp. Every girl wanted to be on the arm of one of the Big Boys (they were the oldest boys at camp, the dinner was always fun and delicious, and we got to dress up!), it was a pretty big deal for us. Whenever I hear the song “Free Fallin” I think of our first dance together, and every dance after then to the same song. Our song. I miss him.

I shared these very personal experiences of loss with you so you can better understand why I am so passionate about the following person. This post isn’t intended to be about loss, it’s about saving a life.

The life of a friend of mine, the life of Susie.

Susie and I met at camp. Since she is 4 years younger than me and in a different cabin, we didn’t have tons of opportunities to hang out. But when we became cabin mates during my final year at camp, I was blessed with the chance to get to know her better. The thing about Susie that stood out to me was her heart. She is kind, compassionate, loving, tender, caring, sympathetic, and sweet. Susie’s heart is what makes her so special!

Last week Susie informed me and all of our friends that she needs a new heart. But in order to get on the transplant list she needs to come up with a huge sum of money to prove she is a worthy candidate. This down payment so to speak will show that she can afford all the costs that come along with receiving a donor heart. For example; relocating closer to the hospital, follow-up treatments, and medications. Currently she has a pacemaker/defibrillator that is keeping her heart from stopping, but this isn’t good enough for the long-term. She needs a new heart to save her life.

I refuse to do nothing when I can do something. I couldn’t save Cassandra, or Homie or Matt. And I know I can’t save Susie all by myself, I need you. I need the readers of my blog. I need the fellow bloggers who enjoy my ramblings and interact with me on a weekly basis. I need the world-wide-web and the people living in it to use all their Social Media Super Powers to get her story out there! I know we can do this together.

Susie’s page can be found here (updated): http://www.giveforward.com/susieslvad  (This is her most recent site, to help her with the expenses surrounding her LVAD while she await a transplant.)

I’m not going to beg for money, although I’m not above that in the least. Today all I am asking of you is that you please post the link above to your Facebook page and encourage others to do that same. Or Send it in a mass email to your friends/family/coworkers urging them to read it and forward it on to their friends/family/coworkers. Or Twitter it (Tweet it? Idk, I don’t do Twitter)…please get the word out there as best you can. If you feel moved to donate, then do so. I thank you from the bottom, top and all sides of my heart for whatever action you are able to take.

This world needs people like Susie, and I need Susie in this world. I nearly fall to pieces thinking about mourning the loss of another friend. Please. Help me, help her. Let’s get Susie on the transplant list!

Thank you.

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