My Life With CP...

So it’s been quite awhile since I last posted. There has been a ton of stuff that has been happening but I just ran out of motivation to write about it. My pendulum swung the other way for a bit, where anything I started to write I deleted because I felt self conscious about it or I was just angry and decided what happened was my business and everyone else could go piss up a rope. Even as I am writing this I have the intense urge to just say screw it and erase this whole thing.


But anyway this past week I have been trying to find some introspection on cerebral palsy and how it has affected my life. This past week at work we had our annual United Way fund raiser and one of the speakers spoke about his son who has CP and the services he received from Happiness House which specializes in services for people with disabilities. Their focus is mainly CP and other brain injury. For those of you who don’t know CP is:

While cerebral palsy (pronounced seh-ree-brel pawl-zee) is a blanket term commonly referred to as “CP” and described by loss or impairment of motor function, cerebral palsy is actually caused by brain damage. The brain damage is caused by brain injury or abnormal development of the brain that occurs while a child’s brain is still developing — before birth, during birth, or immediately after birth.


Cerebral palsy affects body movement, muscle control, muscle coordination, muscle tone, reflex, posture and balance. It can also impact fine motor skills, gross motor skills and oromotor functioning.


**www.cerebralpalsy.org

I was born with cerebral palsy caused from lack of oxygen to my brain during birth. It has affected everything in my life, but I was very lucky that my symptoms are very mild. My muscle coordination is impaired, I have trouble with my hands, my joints, especially my hips are very tight, and I have a pronounced tremor.

The two hardest things I had to deal with growing up were my hands and my tremor. My fingers and knuckles are really tight, but my thumbs are the most affected. They get very stiff and I really have to concentrate to move them. Growing up I had to go to a physical therapist at school to “exercise” my hands. She would roll a large wooden egg into the webbing between my thumb and index finger to stretch them out and ease some of the muscle stiffness. She helped me learn to write using large grip adapters for pens and pencils, but eventually gave up and let me work out my own position system for writing. Where most people write holding the pen between their thumb and index finger, I write with the pen between my middle and ring finger. I hold my fork that way too. When I eat a sandwich, I don’t grasp it between my thumb and fingers, I’ll hold it between my index and middle fingers, using them like tongs or pincers. So growing up I got a lot of strange looks when I had to eat or write.

The tremor was much worse for me because it was so pronounced that everyone noticed. From elementary school through high school my head would bob and weave and create its own irregular orbit around my neck. It is all involuntary and I think that is a reason my neck is so large today. I think that all of the muscles firing in my neck got strengthened to keep my head steady. In addition to my neck I have routine involuntary muscle spasms/twitches where parts of my body just move or lurch. I’ll be lying in bed flat on my back and my shoulders will clench and contract causing my arms and chest to move as well. As I’ve grown older and started working out, I have strengthened my muscles and that helps to reduce my tremor. It is still there and visibly noticeable, but reduced. It becomes much more pronounced if I am concentrating or someone says the four words I absolutely hate to hear, “Try to stay still”. The minute someone says that I become acutely aware of just how much I am moving, so I concentrate on stopping it which just makes it that much worse. I recently went for about six acupuncture appointments and that was a struggle to lie still while she put numerous needles in me, but fortunately she was very patient and worked well in spite of my constant movement. I won’t ever get a massage just because I don’t like people touching me because I know I am going to move uncontrollably at their touch.

The tremor has affected me much more deeply than any of my other symptoms/traits. Because it was so noticeable, I was teased A LOT. Kids are mean in general, so if it wasn’t for my tremor they would have found something else to pick on me about. But because that was the one thing that was so noticeable that was what they focused on. Because of the teasing I learned a lot about myself. I learned that I fought off a lot of their jabs with humor. I would laugh it off in front of them and burn them with a joke trying to not let them see how deeply they cut me. Then when I was alone I would cry and hate myself for being the way I was. I also learned that I had a very clear limit that when pushed to it I responded with violence. There are a few words that push me over the edge, “retard”, “cripple”, and finally one nickname that I loathe “Shakes”. When I was twelve or thirteen there was one kid who found it hilarious to nickname me Shakes Schrader. I had heard from other kids that he was saying it and it hurt me a lot. I tried to avoid him as often as I could until one day during a pick up game of football he said it to my face and everyone around me started laughing hysterically. It was at that point I lost it, I hit that kid so hard he folded like a cheap suit. Then I pummeled him until I was dragged off him and dragged back to my grandparents house. My Grandpa smiled, shook his head and sent me to take a shower where I broke down. But that was a defining moment in my life, no one ever called me Shakes again, at least not in my hearing distance. There have been times where I have thought I’ve seen that word coming to the lips of people I know, but the look in my eyes hardens and they seem to notice and know enough to stifle it before it is said.

As I got older, I realized that some people had some couth and others had none. I had a mother of a girl I was very involved with ask her “So if you two ever have kids will they come out like him?” That stung hard, the “like him?” hurt like I was some sort of grotesque monster that shouldn’t be allowed to reproduce. Even as bad as that was there was a lot of good too. There were people that were interested in me and put all of the bullshit behind them and would just straight up ask me what was “going on” with me. I appreciated that they had the courage enough to come and ask me and genuinely seemed interested in hearing what CP was. There have always been people who have  noticed my tremor but try to ignore it because that is what is politically correct only to go and ask someone who knows me “so what’s his deal?”.

Overall, CP has affected my life in some pretty horrible ways but it has also made me the man I am and that to me is a blessing. Although I have had to learn to live with CP and all of the crap that comes with it, I am thankful that my CP isn’t nearly as severe as it could be. I know I could be wheelchair bound and totally dependent on caregivers. I am not trying to throw a pity party, I know how lucky I am. We all face adversity in our lives, CP is mine. It has been a challenge but one that has made me a stronger person.

So there you go, for those of you who don’t know me well enough to ask, “that’s my deal.”. This is why I am the way I am. There are numerous other ways that CP has affected me but I have already rambled on long enough with these. What is written above are a few of the bigger things that are always in the back of my mind. So enough for now because I am really, really fighting the urge to delete this whole thing before I can post it.

Easter Kite Flying…

A Bird got a kite for Easter from Grandma Pat. She was pretty stoked, and because our house always feels like we live in a wind tunnel it was a perfect gift. So today we went out to fly it for the first time, because guess what? Surprise it was super windy.

I got the kite in the air and handed the reins over to A Bird.

In exchange I was handed her “bug catching net” and Ladybug her favorite baby doll. Once the hand off was made, she proceeded to run like a maniac back and forth dragging the kite and laughing hysterically.

Overall, it was a great afternoon outside. But as I sat there watching her run around, I had a question. How did kites get associated with Easter? Then I thought ah hell who cares and went back to flying kites.

Happy Easter Everyone!!!

Working Man...

The alarm goes off at 5 am rousing him from dreams of being independently wealthy and lounging on white sand beaches with a cold drink in his hand as Jimmy Buffett’s “Margaritaville” plays in the background. The reality of another day of work sets in as he pulls himself from the bed and stumbles towards the bathroom for a shower.


He lets the hot water wash away the last of the tiredness and body aches as he talks with God about keeping his loved ones safe and cancer counts decreasing. Washed and teeth brushed, he turns the water off, towels off and steps to the sink to shave. Wiping away the fog from the mirror, a face he doesn’t recognize appears. The face looks old and beat, wrinkles and crow’s feet dim the once bright eyes. Shocks of white whiskers are prominently displayed in his beard. He just shakes his head as he thinks he has grown old before his time.

He heads back to bedroom and dresses for the day. Dressed and ready to go he leans over the bed and kisses his sleepy eyed wife goodbye. He walks to his daughter’s room but doesn’t enter for fear of waking her and having her up too early, so he listens outside the door for the steady pattern of her breathing. Content with the safety of his girls, he grabs his lunch and hits the door.

In the blink of an eye he is at work. Although the drive takes 25 minutes, he has driven that drive so many times that it just all dazes out until he is pulling into his spot. He is one of the first people through the doors, so it’s quiet. This is his favorite time of the work day, there is no one around to interrupt him or bother him. It’s just him and his work. He plows through as much as he possibly can in silence until his co-workers start to arrive. The rest of the workday is a blur, meetings and work assignments are the main course for the day. He finds himself being the sounding wall for a large number of his co-workers. They come in for casual conversation which leads to how much work they have on their plate and how stressed they are. How they never have enough time to finish one thing before something else is asked of them and how they work so much harder than most but receive little recognition for that fact. He sits listening and occasionally nodding his head in agreement thinking to himself if they spent as much energy on their work as they did bitching about their work they would have it done with plenty of time to spare. Once they are content with venting their frustrations they leave to look for the next sympathetic ear to repeat their story to.

While they are complaining he keeps his head down and mouth shut to get everything done. While they piss and moan about how much they have to do, he is asking for more responsibility and more work. It isn’t that he is some kind of working class hero or anything special, he just knows that he wants and needs to learn more to stay a viable asset. Being a viable asset means longevity in this business which equals stability which equals putting food on the table and making sure his family is provided for.

He doesn’t need the recognition or the accolades that the typical business ass kissers get by riding the backs of their workers. He is happy to toil away under the radar putting in consistently good work and taking on more when he is able. He doesn’t need people to know how hard he works during the day when they perceive that he has it easy, he knows he works hard and that’s all that matters. He is no different than anyone else of the working class. He goes in, does his job, and gets out and as long as that keeps providing for his family he is content.

His day ends and he heads for home anxious to get there to spend the few precious hours before bedtime that he gets during the week with his wife and daughter. The ride shakes off any leftover stress from the day and his mind turns work off so that when his wife asks him at dinner about his day he can barely remember anything of note from work. He prefers to spend his off time thinking about what matters in his life, not worrying or stressing about workplace fears and drama.

The night ends with his daughter tucked into her bed and an hour or so of adult television on the couch with his wife. He finally heads to bed and falls asleep quickly, content with this world and his place in it. He is ready to face the next day and everything it brings.

Life is good.

Good Nights

I love Wednesday night swim lessons with A Bird. I enjoy watching her progress and get a lot of good water safety and time in the water. But its nights like last night that I truly love, when I get to spend some Daddy/Daughter time with A Bird. L Bird had a work banquet so it was just me and A Bird for swim lessons. We loaded up into the car, rolled the windows down, turned the radio up, and she say every song on the radio, whether she knew the words or not.


We get to the YMCA a little early, so we go in and get her swim suit on and her bubble backpack, then she goes and sits with her legs in the water in her lane of the pool to wait for the class to begin. There are four kids in her class, two other girls and a little boy. The two other little girls showed up soon after A Bird and they sat down on each side of her. They all start talking to each other and giggling. I am too far away to hear the conversation, but it was a cute scene. There are three little girls all dangling there feet into the water and gossiping and laughing at each other.

As I sat and watched them talking it really hit me how fast the past five years have gone and how much A Bird has grown up. My mind hit the fast forward button and I could see A Bird in middle school hanging out at the pool with her friends. Then it clicked through further and I imagined her in high school hanging out after school with her girlfriends lounging by the water. It made me immensely happy and incredibly sad at the same time. I am so happy that she is so outgoing and has such great social skills. She seems to build friendships wherever she goes. But I am sad at how fast time marches by, it seems like just yesterday I was sitting in the hospital room holding her for the first time but now she is coming up on five years old and is doing so many things independently.

Finally class starts and the kids jump in the water and it breaks my concentration on what will be. She swims for a half an hour and class ends. She climbs out of the pool and heads to me to dry her off. We walk to the changing rooms and get the last room. I dry her off and she gets dressed as she tells me all of the things she learned from Miss Barb in the pool. Finally dressed we head out and she hits me up for a “snack” from the vending machine. It’s funny because she knows I am the sucker that will let her have something from the junk machine. When it’s both L Bird and I she never stops to ask for a snack, but if it’s just A Bird and I she hits me up every time. I let her pick some starbursts but tell her she can only have three tonight. Another father on his way out stops at the machine after me and gives me a knowing smile and a nod.

We get out to the car and get buckled in, A Bird has picked out her three starbursts and proceeds to “peel” (take the wrappers off) them. We pull out and she asks me to turn down the radio, we have a short conversation about when she grows up she is going to be a country music singer and a dancer then a song comes on by Carrie Underwood and she breaks into song midsentence. So I turn up the radio for her and she sings while I drive. The night was perfect.

My advice to everyone is to take pleasure in the small things in life, like swim lessons, fifteen minute conversations with your children, or just the quiet times together with those you love. Try not to get so caught up in the details and tasks of everyday life. Make time to do things with those you love. Time marches on for us all, and it does so at an alarming pace if you’re not paying attention. Good luck and I’ll keep trying to do the same.

St. Patty’s Day Re-cap

So last few years L Bird and I haven’t really done anything on St. Patrick’s Day, but this year we decided to do it up big with a local pub crawl. Our friend “Luci” basically strong armed the Knights of Columbus into sponsoring a pub crawl. Once that was set, L Bird found bright green sweatshirts that said “Official St. Patrick’s Day Drinking Team” and everyone in our little group bought one and ironed on letters with our nicknames on the back. Let’s just say L Bird was a little iron on letter challenged. They weren’t the best iron on letters anyway but L Bird has little in the way of patience so she had a few missing spots in her letters, but a big bottle of white-out took care of that problem.

Yesterday we drove into town and hooked up with the rest of our group, Captain Insano, Luci, Twin, Stick Bug, and Kielbasa at the K of C. The pub crawl started at 3 o’clock so we spent the first few beers at the K of C, then the canon fired to announce the start of the crawl and we were off. Our first stop was Eddie O’Briens. The place was packed, but we managed to fight our way to the bar. L Bird was too short to force her way in for drinks so we jammed Stick Bug/Skinny Bitch (her other nickname) into the bar and told her to order Labatt Blue Light, she orders the drinks and turns around and hands us green Bud Light bottles. Gross. But there is no such thing as bad beer, only better beer, so we drank them down. Then the Captain pulled a typical Captain move, he cuts a green balloon a chair and spent what felt like 20 minutes tying his perfect boy scout knot around L Bird’s wrist. So we are drinking and Kielbasa takes the balloon off L Bird’s wrist and hooks it onto his ear. In the matter of seconds the balloon comes off Kielbasa’s ear and starts to float away in the restaurant, Captain jumps to catch the balloon and falls into a high top table and completely levels it. Condiments go flying, the table tips over, the chairs scatter everywhere, but he “saved” the balloon. Making sure the balloon was secured the Captain picks up everything and puts it all back together and we promptly leave.

We are a few more bars down, when we hit Trotta’s. Trotta’s is not as packed but still had a few pub crawlers in it. It was an older clientele so it was pretty low key, or so I thought. The bartender came around with a tray of jello shots, so we do a round of jello shots and a couple of beers. The song changes and the bartender turns it up and jumps up on the bar and starts dancing. Then the next thing I knew a bunch of people were on the bar and the bartender was trying to coax L Bird up onto the bar. For whatever reason she wouldn’t get up there until the Captain said he would get up with her. It was awesome!

 

After the dancing we hit another round of free jello shots, then I stepped into the men’s room to break the seal. Tell me what’s wrong with this picture:

Yep, someone misspelled “Employees”. Nice.

Next we hit Pinky’s Bar where we had another highlight. A bagpiper walked in had a drink and played a couple of songs.

After that we finished our beers and made the rounds through Beef N Brew then back to the K of C for dinner. We ate dinner, then made our way down to the Sideshow for the rest of the night. The Captain and I played pool and mellowed out talking to a few hippies we were playing pool with. The final highlight of the night when the Captain completely wigged out this poor bastard. This kid comes walking through the bar wearing a bright green sash that says “Kiss Me, I’m Irish”. I look at the kid and then at the Captain and I say nice and loud “Hey Captain, he’s Irish and you should kiss him” The Captain starts toward the kid with his lips puckered up and the get rips of the sash and shout “No, No I’m Jewish I’m Jewish” while running from the Captain. I laughed so hard I had tears in my eyes.

L Bird and I finally called it a night and headed home around 1:30 AM. Overall, it was a great St. Patrick’s Day with a lot of friends and a lot of fun. I’m already looking forward to next year!

Weekend Bonding

If I had to come up with a theme for this past weekend, it would have to be something to do with bonding. There was a good deal of bonding, some manly bonding over junk houses and firearms, and then there was some marital bonding as L Bird and I celebrated our 8th wedding anniversary.

Saturday morning I packed up a couple dozen eggs and went in to Cpt. Insano’s house as we were going to look at a possible house he wanted to buy. So after some dicking around and waiting on the realtor we finally show up to this house. Now, they are only asking 14K for it, so I knew it was going to be rough, but how rough was the question. We walked up the driveway and entered through the back, and were greeted by a dead mouse. Yeah that’s a good sign! So looking through the house, there were obvious signs of neglect and damage, but there were good signs of work that had been started but hadn’t been finished for one reason or another. The plumbing in the basement looked all new, it was a mix of copper, PVC & PEX. It looks like someone had started putting in a new electrical service and both the electric and water meters were brand new shiny meters. It needed a new roof, as there were a few leaks and water damage in the upstairs. Overall, for only $14K it could have been a lot worse. We headed back outside and chatted with the realtor and found out that the guy who owns it owns several other properties, bought this one for $40K and just ran out of time and patience to put into it so he left it to rot. Now he was just looking to unload it and be done with it. Hearing that perked up the Cpt.’s ears, so now he is contemplating a cash offer for less than $14k to buy it and fix it up as one of his rentals. If he does buy it, there will be a lot more bonding as we gut it and rehab it.

Later that afternoon, L Bird, A Bird and I met with my Dad to drop off A Bird. L Bird and I had dinner reservations at Rheinblick German Restaurant for our anniversary so A Bird had a dinner and movie date with her Papa while we were out. He took A Bird to dinner at her favorite restaurant, McDonald’s, then on to see Dr. Seuss’s The Lorax in 3D, so she was pretty happy. L Bird and I continued on to our dinner which was fantastic. We both got a different schnitzel, L Bird had a nice glass of Riesling and I had 32 ounces of cold, deliciously dark goodness called beer. It was nice to be able to sit and have a conversation without being interrupted by A Bird or the dogs. We had good conversation, talked with one of the waitresses we know, and just had a good time. We left the restaurant completely stuffed and happy.

Sunday the weather was perfect. It was sunny and about 65 degrees with just a light breeze. In the morning I got a text from my brother asking me if I wanted to me him at my Grandfather’s to do some shooting. He knows that I just bought a new gun and had been itching to shoot it, so we set it up for noon. I packed up my gun, extra clips and ammo and headed over. When I got there my brother, my step-father and grandfather were ready to head down back to shoot. My family is a family of gun nuts enthusiasts, the standard saying is “It isn’t a Darling get together without some shooting.”. So the four of us walked out back to the range, my Grandfather owns a lot of land behind the house and the majority of it is woods. There is a nice clearing with a huge clay bank that they have been using as a backstop to sight in rifles, shotguns, and handguns since the 1930’s. If they ever dug that bank out I couldn’t imagine how many tons of lead that they would pull out. We placed our targets up on the bank, loaded up and started firing. Everyone shot every gun that was there. I put the first 50 rounds through my Glock 19, then shot my brother’s Ruger Mark 2 .22 caliber pistol, then finished off with my brother’s Ithaca lever-action .22 rifle. Once all of the ammo was gone, we headed back up to the house to find out my Grandmother had ordered pizza for us for lunch and it was on its way. So we had a nice lunch discussing guns and house hunting.

After lunch, I headed home and took A Bird up to my Mom’s for dinner while L Bird ran a meatloaf down to her Grandfather.

Overall this weekend was a great weekend. I got to spend a lot of time with the people that mean the most to me. Looking forward to next weekend, it looks like it is going to be another fun filled weekend with friends and family.

Life is good.

Self Image, It's a bitch!

Self image is a bitch. It can make you strong or crumble you like dust in the wind. Everybody struggles with these issues I know, but man when they hit me they just seem to suck the life out of me. For the most part, I am a head strong, confident (bordering on cocky at some times), and firm in my views of myself and the world. I know who I am and what I am and I’ve come to terms with that a long time ago.


This is how it is most days, but every once in awhile insecurity creeps in and washes over me like a wave pounding the reef. I try to stand tall against it but my mind just keeps coming and coming until I am so worn down I can’t stand anymore and the wave crushes me underwater against the reef squeezing the air from my lungs. It’s these times that make me feel incredibly unsure about everything in my life. I lose all confidence and I turn into this shell of myself that questions everything. I read into everything way too much and decide that this is all happening because of something I did or something I didn’t do. I feel like all of the bad things I have ever done in my life will be exposed to the world and the world will see me for the pathetic scumbag I really am. I get anxiety attacks and am terrified that people will see that I am just not that good and just cut ties with me. I am terrified of losing my two birds, L Bird and A Bird. I am terrified that work will find out that I am a sham, that I am not as intelligent as they think I am and I’ll be out on my ass with no means to provide for my family. I am afraid that I will lose everything and spiral down into a broken down, no hope drunk that people pass by in the gutter.

Because my nature is to plan for everything, I try to cut off my perceived downward spiral by asking questions of those around me that I am insecure about. This normally backfires on me, be they get irritated by my questioning when to them it has nothing to do with me and they can’t see why it bothers me so much. But that doesn’t stop me, because I just keep pushing and pushing because I HAVE to know what it is I am doing to cause the situation so I can fix it, so I don’t lose everything. Then it comes to the point where I get angry. I get angry at myself for being so weak and insecure, I get angry that I just can’t let things drop and leave them be. Then my anger for myself spills out onto the ones I love and have been pestering with questions. Guilt. Afterwards I immediately feel guilty for getting angry and guilty that I just couldn’t believe them when they told me it wasn’t me. I try to make up for it, by telling them how much I love them and how thankful I am to have them in my life. But by then I feel like the little kid who offers up his football to the bigger kids just so he can be included.

Like I said, self image is a bitch, but I always seem to turn it around. I quiet the negative voices by letting my cocky, arrogant self to show through like a bright light in my mind. I puff myself up and tell myself that I will not let this world beat me. I will be strong, I will make my mark on this world. The things I have done wrong in the past are not what defines who I am today. I can’t change the past, I can only do what I can in this moment to be the best version of myself possible and build a better future. It works to quiet the negativity in my head to a tiny, almost inaudible sound that lurks in the back of my mind. Once I am back to center, I dial back my cockiness and arrogance and just try to be me.

I just try to be Naps. A good husband to L Bird, a good father to A Bird, a good person for my family, a true friend to the few friends I have, a good employee for my boss, a man who is confident in the world around him.

Well, I have rambled on long enough. Do any of you struggle with things like this? Or am I just coming unwrapped and I need to be medicated?