Tuesday, April 19, 2011

He gets it!!

I would guess that he was in his early 20's and seemed to be some type of a shift manager. Maybe an assistant manager, but seemed to be a pretty bright guy and very welcoming. I had gone into the "Wendy's" for an Oreo twisted frosty and he was the one that greeted me.

I decided to go into the store rather than going through the drive-thru because I had a somewhat unusual request. When I place my order I also asked for a small coke, but I wanted the cup to be full of ice and only a quarter the way filled with coke. Since I am limited with my fluid intake and chewing ice helps with my frequent thirst I find it kills 2 birds with 1 stone :)

After I over-explained my restraints on fluids and he gave his apologies of having to charge me for the full cup he decided to give me a medium cup with my request and charged me for a small. He started to turn away and then said "Only 32 ounces? how do you do it" and then grabbed a large cup and said "this is 40 ounces - this is more than a full day of fluid for you, I drink 1 of these each meal"

It has been a while since I have had that feeling. The feeling of someone actually understanding what it is like to have a limitation out of their control. People going through the limitations understand what it is like, but I have found very few people who actually get it that are not going through it - I guess it is the small things in life!!

Thursday, March 10, 2011


Depending on which chair you happen to be in on that day will determine how quickly you see who enters the door. It may be a sweet elderly lady who has been married to her husband for 65 years who the tech is questioning on secrets to a long and happy marriage. It may be the gentleman who uses a walker to get to his chair accompanied by his son who always engages in a game of UNO to pass the time. It may even be the guy who you used to help at work so many years ago and by coincidence you happen to go to the same center.

Regardless of who they are, everyone has a story and when you have the time and enjoy people watching like me, if you don't know their story, you let your imagination have a little fun. Have you ever wondered what your life is going to be like at a different time than it is right now? I know that is probably a loaded question but think of how your life is right now ... now think forward 25 to 30 years.

I can only make assumptions that I may have to be on dialysis at some point in my future. If that is the case I imagine that it will hopefully be at least 25 to 30 years from now. I let my imagination take me there and play out different scenarios.

Will I be driving myself seeing someone I used to work with? Will my son be taking time out of his week to play UNO with me while I use my walker to get across the room? Will my wife be rolling me across the room in a wheel chair watching my struggle to stay awake while she fumbles to watch the tiny TV?

For now it is nice to wonder and enjoy the scenario that I am living. It may not be the most desirable for most people, but everyone has problems. Like the tacky but true saying goes - "It's not how many times you fall down, but how many times you get up that matters".

Saturday, February 26, 2011

The dad machine

Looking in from the outside you can see a red suction cup on the full length glass door. Attached to the the suction cup is a thin white string and it leads to a funny looking contraption. The funny looking object is a combination of a television and radio that is some how joined to work together.

It takes a little bit of time to figure out where I am and what is going on. It dawns on me I am at the house I grew up in, but like most dreams how they merge objects and scenarios into one I realize that I am on the deck of my current house and I am looking in the glass door that I can look out any time that I want right now. The furniture inside is the furniture that I currently sit on. The 2 main differences are 1. the house is different and 2. I am no longer among the living.

This is my utopia, the ability to spend my eternity watching over my two beautiful children and my wonderful wife. What makes it better is the suction cup with the white string leading to the "dad machine" that Tucker has created to look in on me when he misses me. This is the one creation that is able to stay in place where all others are put away by the end of the day.

This was one of the very vivid experiences I had in the Neuro ICU.

I remember it so well, almost too well. Before I had my seizures, I thought I had made my peace with this world. When I say this I hope it is understood that if I happen to pass away into the next world that I would be OK with it and ready for it to happen. It turns out that I am not sure I have made all the peace.

I say this because the same night I experienced my utopia, I also experienced what my total nightmare would be to spend my eternity. The nightmare experience would be to spend my eternity trapped in one place forever not being able to move only looking at the same thing forever. It happened to be the ceiling over the bed I was in at ICU. It did not help that the nurse taking care of me that particular night was wearing all red, or that I was "leathered" to the bed but that is for another day.

I came to call this the night I experienced purgatory. What a relief I had when I was talking to my clergy about this experience and they explained to me that our faith does not believe in purgatory - whew!!

Friday, February 18, 2011

It's only 3 1/2 hours

I've been trying to avoid this for as long as possible, but the time has come that if I do not add another entry here, I might as well turn it off all together - so here goes you'll have to let me know what your thoughts are if it should continue......

The room is different and the people there are different. I'm not sure how different, but it is different. For one the room is different - it's smaller and there are not as many chairs. The staff is different too - there are not as many people and the way they carry themselves is much different. Even the time of day is different - now I go in the afternoon rather than the morning.

After I spent 12 days in the hospital, 10 in ICU and 2 in step-down, the doctor wanted to change things up a little. He changed a lot of things, the location, my medications, the time of day, even the doctor that I see. All of them seem to have made a difference - but things are different. After 3 weeks, I know things are different, I am just still trying to figure out if they are different in a good way or bad.

I am looking at it as I only have to be there for 3 1/2 hours, well, it's actually a little more with the hook-up and disconnect it ends up being about 4 hours - but I still only look at it as about 3 1/2 hours, I guess it's the optimist in me. I get to dissolve into life and watch a 6 inch TV, listen to other patients talk to the TV or even catch a little shut-eye at times on good days, either way you look at it I do feel better and do not have the head aches like I did before.

It surprises me that I look at things the way I do now, I had quite an experience while I was in the hospital - which will have to wait for another entry or most likely a face to face conversation. Its too long to put here, but lets just say it involves hallucinations and even being "leathered-down" everyone who came to visit me had the enjoyment of listening to me rattle off the experience while I was a little drugged up which probably made it that much more enjoyable to listen to.

I know I have changed since my 12 day stay at Riverside, I just hope I have not lost whatever I had before. Things have also influenced me since things have changed with my chair time, but like I have told my new techs - it's only 3 1/2 hours...

Sunday, January 16, 2011


"Get busy living or get busy dying" - One of my favorite quotes from the movie Shawshank Redemption.

I received a prayer quilt this afternoon from my church. I was quite honored to get it and to see all of the people who sent well wishes and prayers for me. I knew a bunch of names, but there were far more names that I did not recognize. I have always felt that prayers are very powerful, and to have almost complete strangers wishing me well, I was very overwhelmed.

It amazes me how one day you have one feeling or emotion and two weeks later you could feel totally different - after all I was terminated from my job via e-mail almost 2 weeks ago. Now here I am getting a wonderful quilt and signed booklet from people who are sending me prayers and well wishes. I also have had some people reach out to me to see how I have been doing and helping to put me in contact with other people to help me find a new career path.

I have always wondered about the "WWJD" campaign and how it started or what would Jesus actually do in some situations, but to be honest I like "WWYD" better meaning "What Would You Do?". I used to work with a guy, I always thought he was a little goofy, but he really had some good points so I will leave you with this as he would often say "To be honest I think your real character is if you were in a room and all the lights were turned off and no one would know it was you who- however you would act at that point in that situation is your real character." So I ask you, how would you act in a dark room where people did not know it was you in the room?