Friday, April 17, 2009

Stupid People Hurt My Brain

Words cannot express how annoying having Cystic Fibrosis can be. Making room for pulmonary treatments, remembering to bring your medication with you wherever you go, taking them specific times so they don't cause any side effects if combined with your other medications. Ah, the fun of a chronic illness. I can't say it has been all that bad though, since it has been a constant source of entertaining stories. Here is a good story from college that still boggles my mind...

In February 2001, I was living in in Grimm Hall on the campus of University of Wisconsin - River Falls. Having always been up front with my issues my entire life, most everyone on my floor knew I had CF and that I needed pulmonary treatments to stay healthy. I use a device that I wear like a vest which inflates and vibrates my chest to shake up the mucus in my lungs and aides me in coughing it out of my body. When the machine is on it gets loud and obnoxious, so during the week, I would always have my door closed when I did my therapy. The weekend was a little more relaxed and I would open my door partially so that I would get air circulating in my room.

Anyone who has lived in a dorm knows that an open door is an open invitation for visitors whether you want them or not. On this particular weekend, I had two of the unwelcome kind; so stoned from God knows what kind of drugs that they walked into my room and stared at me for ten minutes before one of them managed to spit out the words "Are you some kind of freak or something?" Rather than get offended, I decided to play along with them.

"Sure I am. I am an adrenaline junkie. This thing keeps me going all night long!" I said sarcastically.

"That's f*%#*n' awesome!" Stoner # 2 piped in. "Can we ride it?"

I looked at him like he had just farted in church. Ride it? Ride it?! Does this look like an amusement park? I am in the middle of treatment, for the love of God! Alright, if they want an amusement park, I will give them one...for a price.

"Okay. Twenty bucks and you can ride it for two minutes." I said thinking he'll never give me that and he will go away.

"Really?! Okay, here you go!" Stoner # 1 said as he handed me the money. I turned on my machine for two minutes on a low frequency. This guy couldn't stop laughing the whole time. Stoner # 2 handed me another twenty dollars and had the exact same reaction. It was like Beavis and Butthead were in my dorm room. I was okay with it for no other reason than I had just made forty dollars in four minutes for doing next to nothing. Looking back, I should have charged them more. They actually thanked me and said they would be back. I shook my head and closed the door as the left. They would be lucky if they found their way out of the dorm, forget about ever making it back to my room again. I happily ordered a pizza and shared with some of the guys on the floor, content with the fact that my entrepreneurial skills had put some cash in my poor "college student" pocket.

At about 3:30 AM on that same evening, there was a knock on my door. I looked through the peep hole and saw Stoner # 2. I went back to bed hoping that if I ignored him, he would just go away, but he kept incessantly knocking. I couldn't take it anymore so I opened the door and he had the nerve to ask me if he could ride my machine again. I'd had enough of these morons, so I decided to mess with him while he was again clearly stoned out of his mind. "No you can't because it is very late and I am sleeping right now. Plus, you are missing your feet! How the hell did you get here with no feet?!" He looked down at his feet, then looked back at me and said "Really? Where did I leave them? Oh, man. This is bad. This is really bad." (I can't make these things up, people. I am not that creative.) "You better go find them. Hurry up!" I said. Off he went stumbling down the hall and frantically looking around for his feet. I locked my door, chuckling as I headed back to bed.

I saw that guy a few months later and he said he didn't remember a thing about that night. He also said if it did happen, then I was a bad person for messing with him while he was high. I was a bad person? I try not to judge anyone. What people choose to do with their life is their business. However, when someone is waking me up in the middle of the night because they are tripping out on drugs and want to play with my therapy machine, I feel I am within my rights to make him think their feet are missing. That was the day I started to say that stupid people hurt my brain. Unfortunately, I have said it many times since then.

Peaceful Things,


Saturday, April 11, 2009

Voicing My Frustrations...

Lately, I have been questioning who I am, why I am here, and where I am going. I think it is a pretty normal thing to do on the precipice of the big 3-0. That's where the need to write this blog came from. I am frightened to death that I have nothing to show for my life and writing every week reminds me of the unique events that have molded me into who I am. I admit to laughing at my own words, not because I am such an outstanding writer, but because of some of the ridiculous things I have done. I've also cried a lot because I am digging up painful experiences for the first time in years. Some of the things I have written will never see this blog, but I am glad I wrote them. It has been a very cathartic experience. Permit me to write through some frustration this week. I promise there will be more light-hearted stories to come...

When I was young I thought I was invincible. Impervious to anything that might resemble weakness or pain. Then I watched Angela slowly deteriorate before my eyes. We had the same disease and I was not only losing my sister, but essentially watching my impending future. Obstinate and optimistic, I pushed on; secure in the fact that I had a long time before that might ever happen to me. I would never be like Angela. If I ever was, it wouldn't be until I was much older.

The funny thing about time is it is beyond our control. When we want time to speed up, it slows down to a crawl. When we want it to slow down, it charges ahead with reckless abandon. The ages fourteen to twenty two passed in an instant. Before I knew it I was sitting in a hospital bed, a PICC line IV tube protruding from my right arm, wondering how this happened. Since when did I get sick like my sister? Pondering turned to denial and I made an unrealistic promise that this would never happen again. A year and a half later, I was at home on IV's with antibiotics like Ciproflaxcin and Tetracycline coursing through my veins killing any and all bacteria that got in its way; good or bad. What the hell is going on here? All I've ever dealt with is stomach problems. Chronic lung exacerbation was not part of my plan. Yet there I sat again, unable to change my destiny.

Now I find myself searching for purpose within the confines of a body that is slowly falling apart. Don't misunderstand me, my quality of life is good in comparison to many I know and those have read about. I had 22 years of decent health before dealing with all the aspects of this disease. I do not need a transplant yet. I hope I have many years before that becomes a reality. I have a beautiful wife, a home to live in, puppies to love, and a great support group of friends and family. Life is pretty good. Still, these small physical steps downward are a constant reminder that I am at an extraordinary crossroads of life. I never feel well anymore. I have built up a tolerance to daily pain and a stubbornness to plug away because that is what I have always done. I would be letting my sister down if I didn't try as hard as she did. My health is good enough to live a peaceful and "semi-normal" life, but its always in a fragile state. One minute I am great, the next minute I can hardly breathe or my stomach is in agony. Everyday I am doing up to four chest therapies, taking antibiotics, digestive pills, and other medicine that seem to only have a placebo effect. Now I get to add vitamin shots to the list. Due to missing intestines and a non functioning pancreas, my body is not absorbing the proper amount of Vitamin A and it has caused me to have partial night blindness. To reverse these effects, I am giving myself inter-muscular shots every day. Actually, my wife has had to give me the shots because of where I need to receive them. You have no idea how hard it is for me to allow the person I love most to cause me pain. I can deal with the doctors hurting me or giving myself a shot, but not her. I cannot imagine how hard this has been for her. That is why Carly is amazing. My wife made the choice to love me unconditionally. Real love is stabbing your husband in the ass with a nearly two inch needle and injecting him while he screams in pain. Even though I know she hurts inside, she hardly flinches because she wants to be so strong and supportive for me. I do not deserve such a wonderful wife. Thank God I have her.

One thing that keeps me going is my belief that everything happens for a reason. We are supposed to be present and open to every experience in order to fully grasp the magnitude it may have on our lives. I am convinced that all I have been through is part of a greater lesson. What that lesson is remains unanswered, but there has to be an answer...there has to be. Until I figure it, out I'll try to be peaceful everyday. I'll do little chores around our house, work on long term projects and goals, volunteer with different organizations, and write this blog every week in between dealing with my daily health issues. John Lennon once wrote "Life is what happens while you're busy making other plans." My birthday wish for this year and the next thirty is to continue being peaceful and to keep myself open to new experiences. That way, when "life happens" I can fit it in to my busy schedule. Maybe "life" will help me answer those three looming questions: "Who am I?", "Why am I here?", and "Where am I going?"

Peaceful Things,


Saturday, April 4, 2009

"Streaking" For Money and Pride

The subject of high school is pretty straight forward and transcends generations. You either loved it or hated it. While I would put myself in the "hate it" column, I did take one fond memory away from that place... I was a "streaker" at my high school homecoming...kind of...

Shaking, nauseous, and sweating profusely, I stood outside the bathroom entrance. I couldn't back out. I made a bet and I was dead set on getting my money, but more importantly I was going to prove some people wrong. I just wish there was an easier way. I wish I hadn't opened my big mouth.

A few days earlier, I was sitting in the cafeteria eating lunch when these guys all started talking about their plans for the homecoming game on Friday night. The football games were always the starting place for the evening activities. You never stayed for the whole game. Most people left the game to hit up the plethora of house parties and bonfires by halftime. Eventually, the guys at the table asked me what I was doing, to which I smoothly replied "Ummm, nothing I guess." They all chuckled under their breath. One guy - whose name escapes me right now, so we'll call him "Dave" - piped up and said "I know what Josh is doing. He is going to be the streaker at halftime." Homecoming was the scene of the traditional "streaking student" over the years and, since I was a seemingly easy target for ridicule, they all had a great laugh at my expense. Back then I had a tendency to let my emotions get the better of me, so I popped back "What was so funny? I could streak if I wanted to!" Dave put his arm around me and condescendingly said "If you streak,...I will give you a hundred bucks." I couldn't just let them embarrass me that way, so I instantly accepted his bet. There was no down side to it that I could think of at the moment. I could see and hear them make fun of me as I left the cafeteria, but I was pretty happy with how I handled the situation and I was dead set on proving them wrong.

During my next class, the negatives finally dawned on me. What if I actually chickened out and didn't do it? I would have to listen to those assholes make fun of me until graduation. On the other hand, what if I did go through with it? Being naked in front of a bunch of people on a chilly fall night wasn't high on my "to do" list. Sweet lord, there would be girls there, too! Mother Nature didn't give me much to work with as it was, but now I was running in my birthday suit and leaving nothing to the imagination! What the hell was I thinking taking this bet?

My entire high school tenure was riddled with absences caused by Cystic Fibrosis, but this week I was sicker than usual thanks to the self induced stress. I forced myself to go to school on Friday, homecoming day, because I knew if I didn't go to school there was no way my mother would allow me to go to the game. I thought of using it as an excuse, but the result would have been the same regardless: I would be humiliated on a constant basis for the rest of the year. I couldn't go through that. I had to do this, sick or not.

I managed to avoid the any interaction with Dave and his friends during school on Friday and went home to mentally prepare to make a fool of myself. My mom could tell something was bugging me and asked what was wrong, so I partially explained the situation. I told her I was going to run across the field in my boxers during halftime, but I was really nervous. What I didn't tell her was it didn't matter what I wore. I was going to lose the boxer shorts anyways and run buck naked instead. At that point in the conversation most mothers would have discouraged such behavior. Not my mother. She smiled at me and told me to go for it. She has always been a little eccentric , but it was another example of how much she always supported me in my life. She wanted me to prove these guys wrong. So, with the encouragement of my loving and enthusiastic mother, I headed to my doom.

When I arrived at the game the bleachers were starting to fill and I was getting nervous. My friends who knew of my plan wished me luck, but I didn't hear them. I was so anxious I couldn't fully absorb the moment. All I could think about was people laughing at me and possibly getting arrested for indecent exposure. The previous two years, it was my understanding that the person or persons who had attempted streaking were tackled on the football field and hauled off to jail for the night. This could be the beginning of a very long evening.

I looked at clock. Five minutes left in the first half. It was like a countdown to an execution. The trap door was ready, the noose was tied, I just had to make my way to the gallows. I forced myself inside the bathroom and started to undress, much to the chagrin of a lot of the other strangers. I was about to drop trough when three guys I recognized ran into the bathroom and started stripping down too.

"Lane, Clettis, Kyle? What are you doing here?" I asked.

"Mogs?" Clettis said. That was my nickname in high school. "We're streaking. What are you doing?"

"I'm streaking too." I said.

"No way! That is awesome! Come with us! We have a ride and everything all set up."

"Are you all going together? NAKED?" I asked. This was an important question to me. Why would you want to run naked in a group? It was silly enough to run by yourself, but with a few other guys it would be like a free ballin' flopfest out there that would probably be as uncomfortable to watch as it would be to participate in. Clettis eased my fears immediately.

"We're not going naked! Are you nuts?! We're keeping our boxers on. It's just not worth it to go naked. Were you going to?!" he questioned. "NO!" I lied, relieved in the fact that someone else had some common sense working because mine was clearly on hiatus.

Clettis, Lane, and Kyle clued me in on their plan. They had two routes with a driver ready to pick them up. All I had to do was follow their lead. Looking back, I suppose having my own battle plan would have been a better way to go about this whole ordeal, but it honestly never crossed my mind. I was just going to run like there was no tomorrow. I figured I would get caught because I had other factors going against me. Because of the lung damage from CF and a mild case of cerebral palsey, I was not the very accomplished runner. My fastest long distance run was a brisk walk for most. Somebody up there must have been looking out for me because when I explained this to the guys, Clettis laughed and told me to go a little ahead of them and they would catch up to me. I had to admit I was nervous, but the worry that was overwhelming me earlier was transforming into excitement. This was turning into a lot more fun than it was supposed to be. We chucked our clothes in a bag and handed them to the driver who headed to the getaway car. Then, this big group of people surrounded us until we made it to the fence surrounding the field. This was it. No turning back now....

A slap on the back for encouragement from the guys and I was off! I ran like...well, like a toddler taking his first steps. It was kind of pitiful, but I was doing it! Just as I started to build up to kindergartner speed, a blur of three bodies passed me and the crowd rose to their feet. Clettis, Lane, and Kyle were beyond me in milliseconds and I nervously watched where they were going. They headed to the left, where a seven foot fence stood. Those three seemed to leap over it like gazelles. "Come on, Mogs! Move your ass!" I finally made it to the fence and, by the power of all that is good and holy, I climbed over the top with little difficulty. Mustering all the energy I had left, I headed toward the adjacent woods. Just then, I turned to glance over my shoulder and could see security headed our way. There we were sitting in the woods in nothing but our boxers as the security guards continued their search. They gave up quickly and headed back toward the stadium. When the coast was clear we jumped into the moving car and sped off into the night.

We were all laughing and cheering as we made our way to a near by house where we could re-clothe, recover, and review our triumphant and somewhat idiotic accomplishment. "You weren't kidding, Josh. You are slow as hell! I thought you were gonna get caught for sure!" Lane said. I laughed and thanked the guys for letting me tag along. Even though we weren't the closest friends (lets be honest, I was a dork in high school) they looked out for me. It was a special moment for me sitting in that basement with them and was one of the few times I actually felt like I was "normal" in high school. I will never forget that.

A half hour later we made our way back to the game to sit in the stands. I got high fives from people I didn't even know and smiles and laughter from the ones I did know. I was about to sit down when I felt a tap on my shoulder. It was "Dave" from the lunch room. "You didn't streak. You just ran across a football field in your boxers. I'm not giving you money." Just then, Clettis saw me and asked me what was going on. I told him about the bet. He looked at Dave and said "You owe him something, man. He was going to do it on his own. We just invited him to come with us. Meanwhile, you sat on your ass in the stands and did nothing." Reluctantly, he agreed and gave me twenty dollars. We shook my hands and called it square. I didn't care about the money anymore. I had so much fun I'd have paid to do it, but I happily took it from Dave with a huge grin on my face.

The next week I found out where the yearbook club met and inquired whether or not they had any pictures or footage of me streaking. "How could we miss it. You were there long enough." With an annoyed look on my face, I got a copy of it and kept it for my own memory. You couldn't see my face, but the boxers were unique. Handmade Wile E. Coyote boxers that were given to me as a gift. It's there on the tape in living color. I was also excited that the yearbook staff got some pictures of us, but unfortunately they weren't developed yet. I would have to wait until the yearbooks were distributed in May to see the finished product.

Seven months later, we had our yearbooks in hand. I was so excited! I flipped through the year book looking for some kind of pictorial immortality. What I got was a black and white blur that didn't even include me in the caption. I was so disappointed. Lane came up to me later and smirked at me. "You just don't get any breaks, huh Mogs?" He signed my yearbook right by the picture and told me I should write myself in. So I did. I even circled myself. Not that you can tell it's me, but I know it is so you'll just have to take my word for it. I did try to find my streaking footage to post on here, but the tape is currently stored somewhere safe within the confines of my basement or my mother's home. I swear I have it! I'll post it someday!

Even if it wasn't "all the way", the story still makes me happy twelve years later. It amazes me that one of my proudest moments is also one of my most foolish. I am so glad it happened that way. Life has always provided me with the tools to succeed even in the dumbest adventures.

Peaceful Things,


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Peaceful Things ~ Josh
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