I try

A spatula serves it’s purpose, but it doesn’t only help you flip a burger.

As a disabled person it’s also an arm extender for me. Stick it in my mouth and I can turn my heat or AC on, I can adjust the temperature and also switch a light switch if I need.

When I started getting weaker a simple task like opening the refrigerator became difficult. So I took the straps from my cell phone and camera and tied them to the refrigerator handles. Voila! I was able to open the fridge and freezer again.

Well tonight I ran into a new problem. My media player in my bedroom decided to freeze. When this happens you need to unplug the gadget. Now there is no way for me to do it, but I had an idea. For some reason my apartment has a switch that turns off the power to the bottom outlets. So I figured I’d flip the switch off and then back on. This would reset the box for me.

First thing I had to do was move my CD case. That turned out to be more difficult than I expected. Was trying to push it with the footrests on my wheelchair. I ended up moving it, but not without breaking a few pieces off the jewel cases. No biggie since I don’t use CD’s anymore.

After moving the case I was able to reach the switch. I forgot that we put tape over the switch for no one could turn it off by accident. Tried to switch it, but the tape was too strong.

So now I’m trying to figure out how to remove the tape. My first idea was to use the knife on my Swiss Army Knife in my mouth to cut the tape. I was able to poke a few holes, but try as I did it just wouldn’t budge.

Next thought was a bigger knife. I have a hard time opening my kitchen drawers, but at this point I was too invested to just quit. Of course I only have butter knives in the drawer. Cleaned the drawer out a while back because it looked like a mess. So I took a butter knife and tried. Needless to say it was good for shit.

Every brilliant plan has that one part that is well just stupid. I figure I’ll heat the knife up with a lighter and melt the tape. There are so many reasons why this is a bad idea, but I’m in the zone now. I manage to remove some tape and not burn down my apartment.

The moment of truth arrives. I put the spatula in my mouth and try to flip the switch off. It took three attempts, but VICTORY! I successfully flip the switch off and back on again.

Slight problem. Turns out the media box was plugged into a top power outlet. FUCK! All I’ve done is unplugged my clock.


I’m still here

Doctor appointments and other things do pop up from time to time and delay my posts. I’ll be the first to say that I need more discipline. I was also freaked out by people liking the site. People I respect said nice things and I was scared to write. We look at the physical part of the disability and assume it’s our worst enemy, but the truth is what’s in our head is the greatest challenge.

A few random thoughts:

My Doctor appointment turned out to be a very good day. A friend let me borrow a wheelchair accessible van. It was a giant relief not having to wait for a bus to come and pick me up. My appointment was at 4 PM and my scheduled pickup time was 3:45. I’ve missed many appointments thanks to that damn bus. It’s always late and I’ve had to cancel appointments at the last minute thanks to them. Thankfully I had the van. We left at 3:15 and got there at 3:53. So I would have been screwed if I had to use the bus.

People in parking lots are idiots. I wait patiently for them to clear, but they go so slow that you think they expect you’re going to suddenly drive into them. I’m in a wheelchair, but I’m just a person waiting for you to backup. To make matters worse the guy later stopped behind the van when I was loading in. I took a bad angle and had to backup, but this jackass was blocking me as he stared to see how the ramp works. Umm, I drive up it you hump!

Best part was I got to take my best friend to dinner for her birthday. I don’t go to restaurants much, but I appreciate that the hosts and servers actually speak to me now. Years ago the waiter/waitress would always ask the other person what I was ordering. Progress.

Plus I got to see the Christmas Lights in downtown Bethlehem for the first time since 2002. It was a lot easier this time. My girlfriend at the time in 2002 used a hoyer lift to get me in her car. It was a crazy idea, but it worked. Things didn’t work out with her, but it was one of the sweetest things anyone ever did for me.


Facebook Fan Page

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Nurse venting Part 1

Wrote this on my phone last night while I was bored.

Sitting in my bedroom basically hiding from my nurse.

This is my weekend routine. Why choose to be a prisoner in my own home? She’s pretty much given me no choice. I used to use my computer in the living room, but she would creep and look at my screen making me uncomfortable. She would also tell my morning nurse what I had been looking at. They are here to maintain my safety not be one of those internet spy programs.

She also has a cold right now. Last week she called off because of this. The agency provides gloves, hand sanitizer, soaps and masks. This bitch hasn’t even washed her hands the last two nights. I haven’t heard her snoring yet, but i expect it soon. She works 2 jobs and schedules her sleep for after I go to bed. There have been times I’ve needed stuff while in bed, but she doesn’t hear me yell when she’s asleep.

I don’t feel safe or comfortable with this nurse, but I’m stuck with her. I asked for a new nurse and mentioned the sleeping, but 2 months later she is STILL here. It would help if she was a nice person, but she isn’t. She’s shady, nosey and rude. I’ve never heard an I’m sorry,  thank you or please. She is supposed to be here at 11:30pm, but 11:45 is the earliest she ever gets here. No respect for me.

I hear her restless in the other room right now. It’s past the usual time I go to bed. Tough shit! For around 15 total minutes of work it is despicable that the state is paying her to sleep. I would can her and find an aide to replace her. but this is the hardest shift to fill. I really don’t know what to do. She annoys the hell out of me. When i took a piss earlier she sneaked in my bedroom and took tissues without asking.

Time for bed. I hate to inconvenience her and make her work before she can sleep.


Your safety is a priority

I have a confession…

Writing this blog is hard. My grammar isn’t the best and I have a hard time conveying my thoughts. That isn’t the hard part though. The hard part is confronting my life. There have been a few entries that I just stopped writing. I’ve gone to therapy and I still can’t handle my fears.

The truth is I’m scared. I wasn’t the happiest person before I had my emergency tracheostomy, but I wasn’t the saddest either. I was able to enjoy myself before. I’m not capable of enjoyment now. There is a void now and I’m miserable.

This past week was torture for me. My nursing agency was on my ass claiming to be concerned that sometimes I’m alone. I’m a 37 year old man with a fully functional brain. The agency says they are worried about my safety, but guess what? I’m fucking worried too. That’s why I try to limit my exposure to unhealthy situations.

The whole point of coming home was to regain my independence. It wasn’t to make my home feel like a nursing home. It wasn’t to be a prisoner in my home. It was to try to gain back some assemblance of a life. If I played by the rules of the agency I’d still be on the vent 24 hours a day. The agency doesn’t care about my health or safety. They just want money and to cover their asses. They are running a business and I’m running a life. I’m not a pile of paperwork. I’m a fucking human being.

Thankfully some of my nurses see me as a person. Thankfully my pulmonologist sees me as a person. I would try to wean myself off the vent during the day little by little. I started with trying 5 minutes off the vent. Building to 10 minutes and just kept building. The only problem was my Thursday nurse was by the book and I couldn’t try it those days. So I would be on the vent until she left and then turn I would turn it off. The nurse was preventing me from trying to get better. She made me feel sicker than I was.

During my next visit to the pulmonologist I told her about the weaning and she seemed proud of me. I had passed a huge hurdle and only used my vent when I slept. My Doctor had to fill out paperwork for I could officially no longer have to use the vent. The Thursday nurse was still annoyingly anal though. If I wanted to go outside for 10 minutes she would want to take half of my equipment with us. Needless to say I just gave up on Thursdays. I just stayed in my apartment till she would leave. Even that was annoying. Every time I moved she would follow me. She made me feel like I was going to drop dead at any second.

As soon as my waiver changed and I could use an aide instead of a nurse if I wanted I fired her. Go make someone else feel like a prisoner. Sadly, she wasn’t the only one who seemed to not realize I was a person. Down the road I will explain Nurse Ed to you.

Back to this past week…

I tried to explain to my agency that I no longer legally need to have someone around 24 hours. The waiver that provides my services changed in August. The old waiver said that in order for me to be home I had to have coverage 24 hours a day. The new waiver doesn’t require that. I’ve been trying to explain this to my agency for months, but they still don’t get it.

Last week was also my Mom’s birthday which is always a bad day for me. She also died December 30th, 1998 so the holidays in general are very difficult for me. It wasn’t a good time for the agency to be stressing me out. The stress led to some nightmares and just overall anxiety. The agency that was concerned about my safety was causing more health issues than I actually had. For an agency that only covers 8 hours a day they were being very intrusive of my life.

“Your safety is a priority and being without a caregiver is a risk.” That was part of an e-mail I received Friday.

So Saturday night I was watching TV trying to relax and get all the stress out of me when my phone rang at 7:30. It was the agency telling me that my night nurse called off for Saturday and Sunday night due to sickness and that they had no one to cover the shifts.

Excuse me? What the fuck happened to being without a caregiver is a risk? The agency provides masks, gloves and hand sanitizer in case a nurse gets sick, but apparently it’s all for show. Now on short notice I had to find someone to put me to bed. Welcome back stress! The nurse calling off Sunday night bothered me too. Friday night she was fine, but now all of a sudden she was sick and didn’t even bother to see if she felt better the next day.

I didn’t expect the agency to fill Saturday night, but they also told me they couldn’t fill Sunday either on Saturday. They had a whole day to try and fill it, but they never tried. Yes, the agency is really concerned about my safety.

Now it’s Wednesday night and whenever the phone rings I get a little scared. Is a nurse calling off? It’s been a few days without stress. I’m due for some.

I’m not scared about my health. One day something will happen and I’ll have to fight it again. My agency scares me. I don’t trust them. Some would say switch agencies, but they are all the same. They just care about getting paid and covering their asses.

Isn’t life just a bunch of bullshit?


To DNR Or Not?

I spent seven months on my back counting the holes in the dropped ceiling. There have been times where I’ve said that I wish I would’ve just died. Other people have told me that they could not do what I did.

Certain people are so sure that they don’t want to ever go through it. They have no problems signing a DNR (do not resuscitate document). I can understand their viewpoint. To go from walking and living with no hardships to no longer being able to walk and not being independent. Possibly relying on a machine to keep you alive? I can understand all of that. However, the difference is I’ve gone through it.

February 26th, 2008 was the day my world turned upside down. I was in the hospital for the flu, but I had a panic attack and stopped breathing. If I had a DNR at the time my tombstone would read February 4, 1973 – February 26, 2008. I would have died at 35 years old.

Since its 2010, I obviously did not have a DNR. I woke up with a hole in my throat and connected to a machine. They say they tried to intubate me via my mouth first, but they said I somehow blocked the tube (*). I wasn’t grateful for being alive, but I wasn’t ungrateful either. From what I recall I was just in shock. I was also drugged out of my fucking mind.

(*) This is one of the reasons I need to request a copy of my medical records. I’ve never understood why they did a tracheal intubation on me. They said I blocked the tube going down my throat or something like that. It’s not like I could pull the tube out with my hand, but that’s a story for another day.

The worst parts were seeing the terrified looks on the faces of my family and friends. I was still hazy, but the coldness of my nurses and doctors was noticeable too. This is probably the point where the readers without a DNR stop reading and work on getting one.

Some weird things started happening as I recovered. I realized how much my friends cared about me, I fell in love and the Phillies became World Champions. I would have missed out on all of that.

Despite all of that I still can’t decide if I want to go through that again. Sometimes I feel like a burden on people. I’m not sure I’ll be quite as lucky next time with my recovery. Physically I’m not sure how much weaker my Muscular Dystrophy will make me. I lost a lot of strength during the ordeal. If I don’t use the muscles I have then I’m not able to regain that strength. Plus the Phillies core is getting kind of old. Ha

I know I want the plug pulled if I’m brain dead. Without my mind there is no joy in my life. A lifeless body just lying around wasting people’s money is an easy decision.

The black and white is easy, but as always the gray area is a whole different story.


Happy Birthday Mom

I should be happy that I’ve made it to 37 years old, but I feel guilty. The story was written for me. My clock was ticking and I was supposed to be a goner and my Mom should be celebrating her 59th birthday today. The twist is I’m still here and my Mom has now been gone for 12 years.

Growing up disabled nobody was more important to me than my Mom. Disabled or not we always have that extra little in us for our mothers. In my case we had the extra burden of doctor visits and all kinds of stuff that I’m not comfortable discussing here. She raised me and had to deal with a disabled child.

There is no way I can possibly convey what the bond was like. I couldn’t go and do things by myself or with friends; I had to do it with my Mom. Thank God for that. I’ll always remember my 1st concert and my 1st Phillies game and think of her. That is among many other things.

The strongest link is definitely my love for the Phillies. I was 7 in 1980 so I can’t say I remember much. I do remember her going and getting a bunch of newspapers after the Phillies won the World Series. Somewhere in my old house are a few copies of the Philadelphia Daily News that simply said “We Win”. That tradition is still with me today.

She took me to my first game in 1993. Now I don’t know if it means anything that my first game was a doubleheader that ended at 4:41 AM, but it does seem to fit my fucked up my life. My Mom could have said “screw this” during 6 hours of rain delays, but she didn’t. She knew how much my 1st game(s) meant and we stayed until Mitch Williams knocked in Pete Incaviglia in the 10th inning to beat the Padres. Later that year we both shared stunned silence after Joe Carter ended our World Series dreams.

We went to a few more games over the years, but the team was kinda shitty over those years. After a playoff game in 2009 against the Dodgers everything came back to me. Jimmy Rollins had just knocked in the winning runs off Jonathan Broxton. I was looking in my mirror and I started crying. A part of it was joy, but mostly it was me thinking that my Mom didn’t get to share this era of Phillies baseball with me. Without her I would never have gotten so much joy out of baseball without her. So there is why I became such a fanatic.

I was going to write a lot more about how my life was and how my Mom was involved. I was also going to discuss how much her death affected me, but I’ll save that for another time.

The truth is I started writing this while I was crying, but writing those stories put a smile on my face. That’s what she would have wanted today.

I love you Mom.



A quickie for tonight. Was reading my local newspaper and saw this story.

A 78-year-old Upper Nazareth Township man in an electric-powered wheelchair was injured slightly Friday afternoon when he collided with a sport-utility vehilce as he tried to cross Route 191, police said.

First off I’d like to send my best wishes out to the man who was injured. I would also like to send well wishes out to the motorist involved.

I will expand on this subject at a later time (hopefully tomorrow), but a few quick thoughts. We don’t know who was at fault here, but as a person who drives on streets at times I’m surprised this doesn’t happen more often. I try to be as careful as possible, but the truth is that streets are for cars and not wheelchairs. Motorists don’t expect to see a wheelchair on the street. Watching people from my building crossing streets leads me to yelling a lot of times. Some of my neighbors cross with little regard of traffic. A motorist should always be on the lookout, but so should people in wheelchairs. A car going 45 mph can only hit the breaks so fast.

I’m not blaming the disabled person here, but I do think it’s a great subject to discuss at length.



Oh death why do you have to be such a nasty bitch?

It’s the one sure thing that we all have in common. We are all going to die. I accept that, but I don’t like it. The truth is I am way too nosey to die. I’d like to be around when aliens make contact with us. I would also like to be around when we find out that an athlete is actually a cyborg.

Death can be sudden. Death can be prolonged and death can be a relief. It’s still a bitch.

I live in an apartment complex with 15 units. I’ve lived here since April 2002. All the people in the building are permanently disabled. When I moved in here I knew I’d see people I care about die. We lost our first tenant in 2004, but we then went a while without one. We’ve lost 3 residents this year along with a former resident last year.

The 5th passed away this weekend. I’m not going to pretend that I’m too saddened by this loss. It sucks, but we weren’t really close. We were civil and I’d like to think we did help each other from time to time. It’s not that I’m not sad about it, but I think the truth is that it’s a relief for her. She had a stroke over 20 years ago. All that she could really do was move her head and arm a little and she couldn’t talk. Sounds like a horrible way to live to me. I couldn’t talk for a few months and that was frustrating as hell. I can’t possibly imagine how frustrating 20+ years of not talking was.

Despite all that she still managed to earn a few college degrees. She had a little sensor on her glasses that somehow allowed her to use a computer for she could communicate. I wish I could tell you more, but there isn’t much more that I know about her. From what I can tell she lost the will to live. Why? I don’t know, but I understand.

The part that makes me say death is a nasty bitch is the events that have followed her death. I told you more about this woman in this piece then was in her obituary. From afar it feels like the death has been a nuisance to the family more than a loss. One paragraph? One fucking paragraph was her obituary! It’s not like the family couldn’t afford more. People are more concerned about who gets what. It’s a shame to me that the family didn’t at least include her degrees in the obituary.

I’m probably going to catch grief for this post since people here read this, but I don’t care. The most devastating loss I could have is my sister and I can damn well guarantee that people would know how much I loved her.

Yeah, death is a nasty bitch.


What would you do?

A disabled man in Vancouver shows that a dude in a wheelchair can still kick your ass. Video courtesy of My Fox 8 News in North Carolina. Full story here. More after the video.

I’ve often wondered what I would do in such a situation. Taking walks with someone at night can be a scary experience. I may be in a wheelchair, but I still have survival instincts. Unlike the man in the video I don’t have full use of my arms, but I’m pretty sure I can hurt someone by driving my wheelchair full speed at them. Let’s hope I never find myself in that situation.

Bravo Larry Skopnick. You’re a hero and might have a future in wrestling. Nice finishing move. I also wish you could take care of this piece of trash. Video from Fox 6 in Wisconsin.

That ladies and gentlemen is a piece of shit in action. Full story.

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