Words and Music by Paul Simon and Art Garfunkel - Story by Keith
Younger readers won't really get this. They won't know the song or the artist and they won't be able to relate to the aging process or the effects of PD...
I have always liked their music. This song title is exactly how it feels to have PD or have a loved one with PD. The disease moves slowly in most people including me fortunately. Barely perceptible changes that many people miss unless they go for long periods of time without seeing you, then it's more noticeable. Strangers are more likely to notice than others or maybe they are just more open about asking what is wrong ....
The physical changes and challenges are more easily recognized. No point in rehashing those since most of you who read this are all to familiar with them ....
For some time now Mary has been telling me that she has noticed other changes. Things like memory issues or a lack of concentration, attention span , etc. I would just raise my eyebrows in skepticism and tell her how wrong she was, everything is fine, situation normal. I refused to see that there is a mental aspect to this disease let alone admit that I had been affected by it.
Today that all changed. A simple trip to the grocery store forced me to see and begin the process of accepting how PD might be affecting my mind as well as my body. Don't get all bent on me, I am not going soft or silly. But I have to admit that I am struggling with focus and concentration issues which translates into memory issues.
The purpose of my trip to the store was mainly to pick up a birthday card for my son who turns 27 today. I also needed a pack of smokes, a side dish to take to the cookout later today and some canned sodas. As I wandered the store ( a new Kroger, can''t find shit in there yet ) I could not keep it in my head about wanting pasta salad for a side dish , it just wouldn't stay planted. I finally just grabbed some baked beans. Of course I had to have some donuts, some shrimp jambalya and some cookies, but the damn pasta salad wandered in and out of my mind ten times in 20 minutes.
Right after checking out I remembered that I should have gotten a pack of smokes but I decided to stop and get gas and get them there. After loading my bags in the car it hit me that I completely forgot the birthday card. You might ask ...why is this such a big deal ? You would have to be in my head to understand....
I have been living in my head for nearly 55 years now and today I finally recognized what Mary had been seeing for a while. A pattern. I didn't just forget. There is an ADD ( attention deficit disorder) type quality of "fog" that I now operate in ...my mind is slowing down much like my body. And now that I know it, it's both sad and also very scary.
How long ? That is the question everyone with any disease wants answered. How long before "X" happens, whatever your "X" is...
Will I have dementia as many with PD do ? Will I become hateful and ugly with the people I love ? Will I even know them ?
As if the physical part of this disease weren't enough, now I have admit that there is a whole other "thing" to worry about. I always felt that my mind was as sharp as ever and for the most part, it is. But, like everything else....it too is slip sliding away. As the song goes..." the nearer your destination the more you slip sliding away" - Well, thankfully I am quite aways from my destination. It's still a long way away. But I am pretty pissed that I am on the way so to speak...
The last verse of the song is a pretty good summary:
Whoah only God knows, God makes his plan
The information's unavailable to the mortal man
We're workin our jobs, collect our pay
Believe we're glidin down the hiway, when in fact we're slip sliding away
Don't wait up on me, I won't be "home" for a while yet...........
Sunday, September 5, 2010
Tuesday, July 6, 2010
LETTING GO..........AND A LESSON LEARNED.
In the overall scheme of life most people will find this trivial at best and that is OK. A few of you will understand and that will be enough.
I have had a love affair going on the side. A long term thing actually. It got started when I was only 16 years old. My first car was a 1969 Camaro. Since that first one there have been two more. I still remember what I paid for the first one, $2121.21. My dad cosigned a loan for me and I paid for it myself by working part time after school. Three years later at 19 I was about to be married and it had gotten pretty ragged. Seems I couldn't give it away. Finally had an offer of $700 and my Dad said if I was going to sell it that cheap he would give me that for it. So he did. Three months later he sold it for $1200. Kept the profit too. It was a good lesson.
The next one was really nice. It had the hide away headlight option and a Baldwin/Motion paint job. I always hated the paint job and after a while I sold that one too.
But I never got over wanting one. Finally, years later I found one painted with the Z-28 paint option and bought it for $1800. I changed a few things , not much and soon it was my pride and joy. I loved that car. But it became an issue. My wife at the time convinced the preacher at church that I worshipped this car. I didn't. However, I did like to drive it on the weekends and cruise in it on Wards Road, the local hang out for car guys. This was along about the time the prices on these cars started skyrocketing. After many bitter fights and a visit or two from the preacher I was finally coerced into selling it for $3600. Doubled my money, not bad. That was 25 years ago and it is STILL an open wound to me. Today that car would be worth $15,000 !
For 20 odd years I dreamed, I wished and I whined wanting one day to own another 1969 Camaro. I vowed if I could ever afford one again, it would never be sold.
Then about 2 years ago a guy offered to trade me a 1969 Camaro body for my Pro Street race truck. The floor was rusted out of it. The car was rough by anyone's standards. But I traded and got some cash to boot. And so it began again. My last big car build. My dream car. What happened you ask ?
Parkinsons happened, a bad economy happened, old age maybe. My wonderful wife never blinked an eye and supported me all the way. Slowly I built on the car. Welding in new floor pans. Gathering parts when money permitted. Over a period of 2-3 years I had most everything I needed to finish it. But each time money would get tight I knew what was sitting in the shop would keep the bills paid. First one part, then another would get sold. After a while it became harder to make progress. Physically I just can't do what I used to do. For the last year no progress and a lot of lost sleep agonizing over selling it or letting it sit in hopes of one day.....some day.....
Recently I realized that a lot of my stress in life is self induced, like most people probably. Two projects in the shop, bills to be paid, declining energy levels, no time , no money. Something else came into focus too. No matter how much I would enjoy finishing this car it will never be the same. Try as I might, I cannot roll the hands of time back to recapture that point in time I lost so long ago. And so I got serious about selling it. A couple of deals locally fell thru pretty quick. But the feeling of almost having it sold , the relief knowing I wouldn't have it hanging over my head , that told me it was the right decision.
It went on Craigs List tonight in three cities. 30 minutes later a gentleman from NC told me he would arrive tomorrow night on a roll back with cash in hand. He will come and when he leaves the car will leave with him. Only this time, there is no open wound , only a little sadness that five minutes with my wife and two little girls will take care of on any given day.
Of course, I reserved the right ahead of time to buy another car one day when times are better and that wonderful woman I am married to said " of course babe". I don't know if I will ever own another 69 Camaro or not. It doesn't matter like it once did. And for that I am thankful. It is good to know that what matters the most isn't in the shop, it's in the house. And that lesson has been a long one to learn.
Shaaky
I have had a love affair going on the side. A long term thing actually. It got started when I was only 16 years old. My first car was a 1969 Camaro. Since that first one there have been two more. I still remember what I paid for the first one, $2121.21. My dad cosigned a loan for me and I paid for it myself by working part time after school. Three years later at 19 I was about to be married and it had gotten pretty ragged. Seems I couldn't give it away. Finally had an offer of $700 and my Dad said if I was going to sell it that cheap he would give me that for it. So he did. Three months later he sold it for $1200. Kept the profit too. It was a good lesson.
The next one was really nice. It had the hide away headlight option and a Baldwin/Motion paint job. I always hated the paint job and after a while I sold that one too.
But I never got over wanting one. Finally, years later I found one painted with the Z-28 paint option and bought it for $1800. I changed a few things , not much and soon it was my pride and joy. I loved that car. But it became an issue. My wife at the time convinced the preacher at church that I worshipped this car. I didn't. However, I did like to drive it on the weekends and cruise in it on Wards Road, the local hang out for car guys. This was along about the time the prices on these cars started skyrocketing. After many bitter fights and a visit or two from the preacher I was finally coerced into selling it for $3600. Doubled my money, not bad. That was 25 years ago and it is STILL an open wound to me. Today that car would be worth $15,000 !
For 20 odd years I dreamed, I wished and I whined wanting one day to own another 1969 Camaro. I vowed if I could ever afford one again, it would never be sold.
Then about 2 years ago a guy offered to trade me a 1969 Camaro body for my Pro Street race truck. The floor was rusted out of it. The car was rough by anyone's standards. But I traded and got some cash to boot. And so it began again. My last big car build. My dream car. What happened you ask ?
Parkinsons happened, a bad economy happened, old age maybe. My wonderful wife never blinked an eye and supported me all the way. Slowly I built on the car. Welding in new floor pans. Gathering parts when money permitted. Over a period of 2-3 years I had most everything I needed to finish it. But each time money would get tight I knew what was sitting in the shop would keep the bills paid. First one part, then another would get sold. After a while it became harder to make progress. Physically I just can't do what I used to do. For the last year no progress and a lot of lost sleep agonizing over selling it or letting it sit in hopes of one day.....some day.....
Recently I realized that a lot of my stress in life is self induced, like most people probably. Two projects in the shop, bills to be paid, declining energy levels, no time , no money. Something else came into focus too. No matter how much I would enjoy finishing this car it will never be the same. Try as I might, I cannot roll the hands of time back to recapture that point in time I lost so long ago. And so I got serious about selling it. A couple of deals locally fell thru pretty quick. But the feeling of almost having it sold , the relief knowing I wouldn't have it hanging over my head , that told me it was the right decision.
It went on Craigs List tonight in three cities. 30 minutes later a gentleman from NC told me he would arrive tomorrow night on a roll back with cash in hand. He will come and when he leaves the car will leave with him. Only this time, there is no open wound , only a little sadness that five minutes with my wife and two little girls will take care of on any given day.
Of course, I reserved the right ahead of time to buy another car one day when times are better and that wonderful woman I am married to said " of course babe". I don't know if I will ever own another 69 Camaro or not. It doesn't matter like it once did. And for that I am thankful. It is good to know that what matters the most isn't in the shop, it's in the house. And that lesson has been a long one to learn.
Shaaky
Saturday, June 19, 2010
SOMETHING ELSE
Tomorrow on June 20 Mary and I will celebrate six years of marriage. By some standards, that isn't such a long time, no world record or milestone....
However, it has been the best six years I have ever had. I think THAT is important and unique. The divorce rate for newly married first timers is about 60% now. That is 60% won't make it. Astonishing. I can't tell you what the rate is for folks that have been married once or twice before but it must be about a 70-80% or higher failure rate. The odds are against us. No matter, Mary and I defy odds all the time. We laugh about it.
So is there a secret or a trick to staying happy ? Not really. Common Sense, manners, mutual respect, a sense of humor. Things your parents likely tried to teach you.
In any case I don't want to blog about how to stay married or why people today are so unhappy . Those are all good topics but my main point is very simple.
Happy Anniversary to the most wonderful wife and mother I have ever known ! You make me happy, you make me laugh, you have given me two of the most precious daughters and together we are figuring out our journey as we go along. I wouldn't want to be married to ANYONE else EVER again and I hope we are able to have many, many years together enjoying each other and our children. Thanks for these six years and I am looking forward to the next six !
However, it has been the best six years I have ever had. I think THAT is important and unique. The divorce rate for newly married first timers is about 60% now. That is 60% won't make it. Astonishing. I can't tell you what the rate is for folks that have been married once or twice before but it must be about a 70-80% or higher failure rate. The odds are against us. No matter, Mary and I defy odds all the time. We laugh about it.
So is there a secret or a trick to staying happy ? Not really. Common Sense, manners, mutual respect, a sense of humor. Things your parents likely tried to teach you.
In any case I don't want to blog about how to stay married or why people today are so unhappy . Those are all good topics but my main point is very simple.
Happy Anniversary to the most wonderful wife and mother I have ever known ! You make me happy, you make me laugh, you have given me two of the most precious daughters and together we are figuring out our journey as we go along. I wouldn't want to be married to ANYONE else EVER again and I hope we are able to have many, many years together enjoying each other and our children. Thanks for these six years and I am looking forward to the next six !
Friday, May 21, 2010
I MISS ME.......
This is about as close as you will ever see me get to wallowing in self pity. Sure, we all have days where we feel a little sorry for ourselves. Some people have self pity down to an art form though and for those poor souls I feel sorry.
If you follow this blog you know that I am trying to live my life without letting PD run the show so to speak. This post has to start closer to the beginning though, before I took control of my life back from the disease.
About the time I was diagnosed we found out we were having our daughter, Rielly-Anne who arrived five months later. During the time between my diagnosis and her birth I spent a great deal of time wondering if I would even live to see her turn five years old, if I would ever be able to take a walk with her or see her grow up. There was so much I didn't know at the time even though I had been exposed to PD by my oldest brother who had been diagnosed with PD+MSA several years before. Out of ignorance about how PD would really affect me in my day to day life I was left to wonder.....and we always tend to think the worst.
Almost four years later, I now know how PD will affect me day to day and I also know it is an exercise in futility to sit around and try to figure out the future. I have learned that I don't have to lay down and roll over and allow myself to be paralyzed by fear of the unknown or even the known. We have made decisions that are surely seen as controversial. We had a second daughter. I am building another race car. Almost as if there was no PD......
But there is PD and there are times when you just can't stop a feeling or an emotion from taking control.
My step son, Joe has taught himself to play guitar over the last year or so. When he first showed an interest I showed him a few chords and figured he would lose interest in a month or two. When his interest held and he started showing an exceptional ability to play I gave him my old accoustic to guitar to go with his electric. The other day as I walked by his room I heard him playing and just stood quietly listening as he skillfully played first one song and then another and I don't mean chords .....this was lead guitar stuff that I never could have played on my best day pre PD.
As I listened I found myself in self pity, wishing I could still play a little guitar now and then. And from there my mind wandered to other things I wished I could do like sit quietly for more than a few minutes without my legs cramping and jumping and forcing me to get up and move around...
get thru a day without being completely worn out and wanting a nap....play with my daughters the way my oldest, Bryan is able to play instead of being limited by old joints, fatigue, etc.
Tonight, almost a month after starting this post, I was looking thru pictures of me on my facebook page and I ran across a picture of me holding Rielly-Anne right after she was born about three and a half years ago. I didn't take a long look for me to realize that a lot has changed in the four years since I was diagnosed. A lot. And yet, to me, it seems as if I am no worse , at least that is what I tell people when they ask me about it. I tell myself that too. But pictures don't lie. They leave little room for "putting up a front" or " having a positive outlook". There is no denying that PD is slowly, inevitably changing me and in my own stubborn way I am in denial and refuse to give in. I am sticking with the plan to live my life the way I want for as long as I can. I no longer wonder if I will see Rielly-Anne reach 5 years old. I probably will. Instead I focus on making all the time I get with my wife and kids into memories or in some cases life lessons, that will be remembered. Like Sunday mornings- Rielly-Anne and I now have a tradition of going to pick out a dozen fresh donuts, in "your Shaaky truck Daddy", she loves to go anywhere with me in my Shaaky truck.
Lately, Mary has been telling me I am having a mid life crisis. Race cars, hot rods, now I want a little 10 foot tunnel hull race boat. We agreed not to call it a crisis though, mid life issues...
My label is more like a bucket list. There is a sense of urgency now that wasn't always there...
And in the midst of all this, sometimes, like when I was listening to Joe play my old acoustic guitar, I miss the me I used to be. For a few minutes, I plummet into a little spat of self pity. Never for long though because it would take up too much precious time , wasted in thoughts of what might be instead of what is and what can be. I think it is like a quick glance in the rearview mirror, you can't drive the car if you stay focused on the rearview mirror, you have to be looking over the hood, anticipating, reacting, adjusting, correcting. Funny how it comes back to driving something isn't it ? :-)
So, I will drive on and I will enjoy the drive. And when I can no longer drive, I will ride. And whenever the last ride comes, there will be no regrets. Sure, I miss the me I used to be sometimes. But I love the life Mary and I have with our kids and nothing will keep me from living it as fully as I can while I can. Stubborn ? Yep. Determined ? Yep. Single minded ? Yep. Driven ? Yep.
Happy ? Yep. Tremendously.
If you follow this blog you know that I am trying to live my life without letting PD run the show so to speak. This post has to start closer to the beginning though, before I took control of my life back from the disease.
About the time I was diagnosed we found out we were having our daughter, Rielly-Anne who arrived five months later. During the time between my diagnosis and her birth I spent a great deal of time wondering if I would even live to see her turn five years old, if I would ever be able to take a walk with her or see her grow up. There was so much I didn't know at the time even though I had been exposed to PD by my oldest brother who had been diagnosed with PD+MSA several years before. Out of ignorance about how PD would really affect me in my day to day life I was left to wonder.....and we always tend to think the worst.
Almost four years later, I now know how PD will affect me day to day and I also know it is an exercise in futility to sit around and try to figure out the future. I have learned that I don't have to lay down and roll over and allow myself to be paralyzed by fear of the unknown or even the known. We have made decisions that are surely seen as controversial. We had a second daughter. I am building another race car. Almost as if there was no PD......
But there is PD and there are times when you just can't stop a feeling or an emotion from taking control.
My step son, Joe has taught himself to play guitar over the last year or so. When he first showed an interest I showed him a few chords and figured he would lose interest in a month or two. When his interest held and he started showing an exceptional ability to play I gave him my old accoustic to guitar to go with his electric. The other day as I walked by his room I heard him playing and just stood quietly listening as he skillfully played first one song and then another and I don't mean chords .....this was lead guitar stuff that I never could have played on my best day pre PD.
As I listened I found myself in self pity, wishing I could still play a little guitar now and then. And from there my mind wandered to other things I wished I could do like sit quietly for more than a few minutes without my legs cramping and jumping and forcing me to get up and move around...
get thru a day without being completely worn out and wanting a nap....play with my daughters the way my oldest, Bryan is able to play instead of being limited by old joints, fatigue, etc.
Tonight, almost a month after starting this post, I was looking thru pictures of me on my facebook page and I ran across a picture of me holding Rielly-Anne right after she was born about three and a half years ago. I didn't take a long look for me to realize that a lot has changed in the four years since I was diagnosed. A lot. And yet, to me, it seems as if I am no worse , at least that is what I tell people when they ask me about it. I tell myself that too. But pictures don't lie. They leave little room for "putting up a front" or " having a positive outlook". There is no denying that PD is slowly, inevitably changing me and in my own stubborn way I am in denial and refuse to give in. I am sticking with the plan to live my life the way I want for as long as I can. I no longer wonder if I will see Rielly-Anne reach 5 years old. I probably will. Instead I focus on making all the time I get with my wife and kids into memories or in some cases life lessons, that will be remembered. Like Sunday mornings- Rielly-Anne and I now have a tradition of going to pick out a dozen fresh donuts, in "your Shaaky truck Daddy", she loves to go anywhere with me in my Shaaky truck.
Lately, Mary has been telling me I am having a mid life crisis. Race cars, hot rods, now I want a little 10 foot tunnel hull race boat. We agreed not to call it a crisis though, mid life issues...
My label is more like a bucket list. There is a sense of urgency now that wasn't always there...
And in the midst of all this, sometimes, like when I was listening to Joe play my old acoustic guitar, I miss the me I used to be. For a few minutes, I plummet into a little spat of self pity. Never for long though because it would take up too much precious time , wasted in thoughts of what might be instead of what is and what can be. I think it is like a quick glance in the rearview mirror, you can't drive the car if you stay focused on the rearview mirror, you have to be looking over the hood, anticipating, reacting, adjusting, correcting. Funny how it comes back to driving something isn't it ? :-)
So, I will drive on and I will enjoy the drive. And when I can no longer drive, I will ride. And whenever the last ride comes, there will be no regrets. Sure, I miss the me I used to be sometimes. But I love the life Mary and I have with our kids and nothing will keep me from living it as fully as I can while I can. Stubborn ? Yep. Determined ? Yep. Single minded ? Yep. Driven ? Yep.
Happy ? Yep. Tremendously.
Sunday, April 11, 2010
INSPIRATION
By the time you get to be my age (almost 55 and so ready to eat from the seniors menu) one often thinks they have seen it all. Wise folks know however, that you can learn something new every day. Not saying I am wise but I do keep an open mind....
As we go through life there are ups and downs, bumps in the road, really good times and sometimes really bad times. As human beings we try to maintain our balance and not get all crossed up along the way. Some struggle with disease, disaster, tragedy while others may seem to lead a charmed life with little to weigh them down along the way. Eventually, we all struggle with something though. Eventually, "there will come a day" ...some of you may recognize that phrase. You know who you are. The very Reverend Pethel drove that point home many times on Friday. He was preaching at my nephew Chris' funeral and as only a fundamental Baptist preacher can, he was calling all who would listen to accept Jesus. But that isn't exactly what I am about here, he did a fine job and I enjoyed listening to him very much. I couldn't begin to be as good a speaker.
Instead, I want to share what I think is perhaps Chris' greatest accomplishment because it is very close to some of the things that I have nagged anyone who would listen about for the last three years. You can go back in previous posts on this blog if you want to catch up or you can click the X at the top if you just don't care to be nagged , LOL .
For those of you who follow my blog but are not family, Chris was my nephew and he was killed in a tragic car accident on Easter Monday. He left a wife and three young children behind and from the looks of it , an entire community of people who thought the world of him.
When I returned home from NC after the funeral my wife put in one of her favorite movies. Some of you may know it...."As good as it gets" starring Jack Nicholson, Greg Kinnear, Helen Hunt , etc. It is the story of an obsessive compulsive guy struggling thru life and at one point in the movie as he is walking thru his analysts office waiting room which is full of people, he asks them....What if this is as good as it gets ? Rather pessimistic , but a very interesting question when you think about it.
Chris got it right. His life was truly as good as it gets. Why ? What was his secret ? As I spent Thursday and Friday with his family, friends and community I saw a man who had come to realize at least two things that some people never learn and others like me take a lifetime to learn and put into practice.
The first thing is that Chris knew that life is only as good as YOU make it. He was a glass half full kind of person. He would never have asked, is this as good as it gets ? He would be making it good, then better and better. Rick Pethel told me a story about Chris and his driving habits while I was at the family night. He said when Chris would be driving his head would be constantly moving, scanning, he didn't want to miss anything , anytime, anywhere. That was kind of ironic because I am like that too. And you know what ? Chris didn't miss much. He was PRESENT AND ACCOUNTED FOR in his kids lives, his wonderful wife Amber's life, her family's life, his community.....he lived every day as fully involved as he could. He made time for everything and everybody. He worked hard at any job he undertook but he worked hardest at living every minute of every day and having as much fun as he could have in every single thing he did. He made everyone laugh and smile. He was willing to look silly in order to get that smile. He made life as good as it gets......so good in fact that most people , even without knowing him, could just look at the pictures and stories at the funeral home and you just knew this guy had the secret of happiness locked down.
So how did he accomplish this feat of happiness ? I guess this is where I get on my soapbox and nag some more.....My favorite book, Tuesday's with Morrie, written by Mitch Albom.
In order to live life to your fullest, happiest capacity you must first be able to accept death. You must accept that death is a part of life and understand that you never know when it will be your turn. Once you can do that, you are then free to live a happier , fuller life. To put it another way and to reiterate....There will come a day. See? I told you that preacher was smart...
That day may not be the day you die, it may be the day you get a diagnosis like Parkinsons, or Mantle Cell Lymphoma, or any other bad news that just knocks you over. There are lots of bad days where the writing is on the wall.....the wake up call , the knock on the door to your brain and you should get the message. Whatever your struggle is, you can't go back to tomorrow and I don't think Chris EVER looked backward, only forward to the next exciting minute of his life. He was looking forward, all the while packing his bags.
He packed and packed and packed some more. None of us know how long the journey will be but Chris knew to keep packing as long as he could ....and you know what he was packing ?
He was packing life, love, memories, good times, silly times, fun times, smiles, hugs, kisses, blessings. He lived every day all he could so that when that day came, he would be ready. His bags would be packed as full as he could get them. In fact, the angels likely had to charge extra for all those bags because you can't take but two plus one carry on without paying extra and it was obvious that Chris had been packing for many years. ( Hope he grins when he reads this ).
Ultimately, Rev. Pethel and I are after the same thing. You have to accept death as a part of life before you can live. Chris had it right, I got it right. So what did I learn different from Chris ?
I got the first two things covered. It's that third thing that Chris did so well that hit home to me this week.
Pack your bags. Pack them full, then get another bag and pack that one full too. Work harder at making the time for "packing" i.e spending time with my kids , my wife, my family. Pack like you were leaving and never coming back. Because there will come a day........when you won't come back. And your bags better be packed and sitting by the door.
As we go through life there are ups and downs, bumps in the road, really good times and sometimes really bad times. As human beings we try to maintain our balance and not get all crossed up along the way. Some struggle with disease, disaster, tragedy while others may seem to lead a charmed life with little to weigh them down along the way. Eventually, we all struggle with something though. Eventually, "there will come a day" ...some of you may recognize that phrase. You know who you are. The very Reverend Pethel drove that point home many times on Friday. He was preaching at my nephew Chris' funeral and as only a fundamental Baptist preacher can, he was calling all who would listen to accept Jesus. But that isn't exactly what I am about here, he did a fine job and I enjoyed listening to him very much. I couldn't begin to be as good a speaker.
Instead, I want to share what I think is perhaps Chris' greatest accomplishment because it is very close to some of the things that I have nagged anyone who would listen about for the last three years. You can go back in previous posts on this blog if you want to catch up or you can click the X at the top if you just don't care to be nagged , LOL .
For those of you who follow my blog but are not family, Chris was my nephew and he was killed in a tragic car accident on Easter Monday. He left a wife and three young children behind and from the looks of it , an entire community of people who thought the world of him.
When I returned home from NC after the funeral my wife put in one of her favorite movies. Some of you may know it...."As good as it gets" starring Jack Nicholson, Greg Kinnear, Helen Hunt , etc. It is the story of an obsessive compulsive guy struggling thru life and at one point in the movie as he is walking thru his analysts office waiting room which is full of people, he asks them....What if this is as good as it gets ? Rather pessimistic , but a very interesting question when you think about it.
Chris got it right. His life was truly as good as it gets. Why ? What was his secret ? As I spent Thursday and Friday with his family, friends and community I saw a man who had come to realize at least two things that some people never learn and others like me take a lifetime to learn and put into practice.
The first thing is that Chris knew that life is only as good as YOU make it. He was a glass half full kind of person. He would never have asked, is this as good as it gets ? He would be making it good, then better and better. Rick Pethel told me a story about Chris and his driving habits while I was at the family night. He said when Chris would be driving his head would be constantly moving, scanning, he didn't want to miss anything , anytime, anywhere. That was kind of ironic because I am like that too. And you know what ? Chris didn't miss much. He was PRESENT AND ACCOUNTED FOR in his kids lives, his wonderful wife Amber's life, her family's life, his community.....he lived every day as fully involved as he could. He made time for everything and everybody. He worked hard at any job he undertook but he worked hardest at living every minute of every day and having as much fun as he could have in every single thing he did. He made everyone laugh and smile. He was willing to look silly in order to get that smile. He made life as good as it gets......so good in fact that most people , even without knowing him, could just look at the pictures and stories at the funeral home and you just knew this guy had the secret of happiness locked down.
So how did he accomplish this feat of happiness ? I guess this is where I get on my soapbox and nag some more.....My favorite book, Tuesday's with Morrie, written by Mitch Albom.
In order to live life to your fullest, happiest capacity you must first be able to accept death. You must accept that death is a part of life and understand that you never know when it will be your turn. Once you can do that, you are then free to live a happier , fuller life. To put it another way and to reiterate....There will come a day. See? I told you that preacher was smart...
That day may not be the day you die, it may be the day you get a diagnosis like Parkinsons, or Mantle Cell Lymphoma, or any other bad news that just knocks you over. There are lots of bad days where the writing is on the wall.....the wake up call , the knock on the door to your brain and you should get the message. Whatever your struggle is, you can't go back to tomorrow and I don't think Chris EVER looked backward, only forward to the next exciting minute of his life. He was looking forward, all the while packing his bags.
He packed and packed and packed some more. None of us know how long the journey will be but Chris knew to keep packing as long as he could ....and you know what he was packing ?
He was packing life, love, memories, good times, silly times, fun times, smiles, hugs, kisses, blessings. He lived every day all he could so that when that day came, he would be ready. His bags would be packed as full as he could get them. In fact, the angels likely had to charge extra for all those bags because you can't take but two plus one carry on without paying extra and it was obvious that Chris had been packing for many years. ( Hope he grins when he reads this ).
Ultimately, Rev. Pethel and I are after the same thing. You have to accept death as a part of life before you can live. Chris had it right, I got it right. So what did I learn different from Chris ?
I got the first two things covered. It's that third thing that Chris did so well that hit home to me this week.
Pack your bags. Pack them full, then get another bag and pack that one full too. Work harder at making the time for "packing" i.e spending time with my kids , my wife, my family. Pack like you were leaving and never coming back. Because there will come a day........when you won't come back. And your bags better be packed and sitting by the door.
Wednesday, February 3, 2010
COURAGE - Part II
I got a lot of feedback from my last post about courage.....I like feedback. It causes me to keep thinking , sometimes along different lines...
The last couple of days my thoughts have turned towards the people who enable others to have courage. You might call these people encouragers......they empower people like me, my brother Eddie, my friend Dan ( who also has PD+MSA), my friend Ben, and my brother Larry...they empower us to have that courage, that hope, that spirit.
Don't get me wrong, a person has to be wired a certain way to begin with to have courage. There are lots of people , who in the face of illness or adversity just give up. They show no sign of hope, courage, spirit- zip, nada, none. However, as wonderful, courageous, spirited, determined as I made my oldest brother out to be in my last post, I now want to shine the light in another direction.
These people - I referred to earlier as "encouragers" are every day people who have risen or are rising to a challenge. A challenge which sometimes sweeps away everything in it's path with no regard for anything or anyone. Who are these people ?
CAREGIVERS
One simple word that encompasses a world of sacrifice, love , victories, losses, pain, and ultimately usually grief.
Caregivers usually find themselves thrust into situations they did not plan for such as having to go from home maker to bread winner or vice versa in the case of male cargivers caring for a disabled spouse or elderly parent, or disabled child. They have to learn new skills like giving injections, dealing with bed sores, keeping catheters clean, learning how to use a feeding tube or cope with physical demands like moving a person from bed to chair or car.
Their resources, life savings , homes can dry up and blow away like dust in the wind in the face of mounting medical costs and limited or no income. Other family members may disagree with decisions or actions by the caregiver without thinking about how their judgements might affect the caregiver or the patient.
And on top of all the obstacles, decisions, hardships and crisis situations the caregiver must deal with daily they almost always also sit and watch a loved one suffer, deteriorate , and die. No matter how much they do, how hard they try, how many prayers are said or tears are shed.....in the end the caregiver is left to wonder .....Did I do all I could ? What if I had done this....or that....Why did this happen to me ? To us ? Why can't I fix this ?
One caregiver I know commented that she was in awe of the way her husband handled himself in dealing with PD. Another caregiver has shared many painful stories about how they just can't cope. There is no paycheck. Friends and Family rarely understand the sacrifices that the caregiver may have to make in order to get the job done. I recently saw a TV documentary about parents caring for their children who were wounded in Iraq or Afghanistan and came home requiring constant care and assistance. The government usually provides a pension for that person, but who pays the caregiver who has to give up their life, their job , sometimes the rest of their family ?
There is another word for Caregivers that quite possibly suits them better.
HEROES
Yes, they are truly heroes. In every sense of the word.
My wonderful wife recently admitted that in a dark corner of her mind she sometimes wonders if she is up to the challenge of what is to come. I am sure every caregiver wonders about that at some point. Most just keep on getting up literally and figuratively for whatever challenge the next day brings.
So, the next time you meet someone who is disabled or has some type of disease that is going to affect them the rest of their life....try to see the big picture. They may have courage beyond compare , no doubt , just like both my brothers , my friends Dan and Ben...but ultimately their is someone standing close beside them, ready to help, always there , looking for the next challenge, enduring the pain of watching something happen to someone they love that is out of their control. Dealing with the world, family members, doctors, medicare, insurance companies and anyone or anything else that comes their way.
These are the forgotten heroes. These are OUR heroes. We will leave them behind to pick up the pieces, rebuild and recover if they can. When you see one...be sure to let them know that you see what they are doing and that it is important and appreciated. Be quick to praise and slow to judge. Tell them what a great job they are doing. They need that in order to do what they must do.
To all my blog friend caregivers, you know who you are, I appreciate you. You're doing wonderful , great things. You are all heroes.....
Shaaky
The last couple of days my thoughts have turned towards the people who enable others to have courage. You might call these people encouragers......they empower people like me, my brother Eddie, my friend Dan ( who also has PD+MSA), my friend Ben, and my brother Larry...they empower us to have that courage, that hope, that spirit.
Don't get me wrong, a person has to be wired a certain way to begin with to have courage. There are lots of people , who in the face of illness or adversity just give up. They show no sign of hope, courage, spirit- zip, nada, none. However, as wonderful, courageous, spirited, determined as I made my oldest brother out to be in my last post, I now want to shine the light in another direction.
These people - I referred to earlier as "encouragers" are every day people who have risen or are rising to a challenge. A challenge which sometimes sweeps away everything in it's path with no regard for anything or anyone. Who are these people ?
CAREGIVERS
One simple word that encompasses a world of sacrifice, love , victories, losses, pain, and ultimately usually grief.
Caregivers usually find themselves thrust into situations they did not plan for such as having to go from home maker to bread winner or vice versa in the case of male cargivers caring for a disabled spouse or elderly parent, or disabled child. They have to learn new skills like giving injections, dealing with bed sores, keeping catheters clean, learning how to use a feeding tube or cope with physical demands like moving a person from bed to chair or car.
Their resources, life savings , homes can dry up and blow away like dust in the wind in the face of mounting medical costs and limited or no income. Other family members may disagree with decisions or actions by the caregiver without thinking about how their judgements might affect the caregiver or the patient.
And on top of all the obstacles, decisions, hardships and crisis situations the caregiver must deal with daily they almost always also sit and watch a loved one suffer, deteriorate , and die. No matter how much they do, how hard they try, how many prayers are said or tears are shed.....in the end the caregiver is left to wonder .....Did I do all I could ? What if I had done this....or that....Why did this happen to me ? To us ? Why can't I fix this ?
One caregiver I know commented that she was in awe of the way her husband handled himself in dealing with PD. Another caregiver has shared many painful stories about how they just can't cope. There is no paycheck. Friends and Family rarely understand the sacrifices that the caregiver may have to make in order to get the job done. I recently saw a TV documentary about parents caring for their children who were wounded in Iraq or Afghanistan and came home requiring constant care and assistance. The government usually provides a pension for that person, but who pays the caregiver who has to give up their life, their job , sometimes the rest of their family ?
There is another word for Caregivers that quite possibly suits them better.
HEROES
Yes, they are truly heroes. In every sense of the word.
My wonderful wife recently admitted that in a dark corner of her mind she sometimes wonders if she is up to the challenge of what is to come. I am sure every caregiver wonders about that at some point. Most just keep on getting up literally and figuratively for whatever challenge the next day brings.
So, the next time you meet someone who is disabled or has some type of disease that is going to affect them the rest of their life....try to see the big picture. They may have courage beyond compare , no doubt , just like both my brothers , my friends Dan and Ben...but ultimately their is someone standing close beside them, ready to help, always there , looking for the next challenge, enduring the pain of watching something happen to someone they love that is out of their control. Dealing with the world, family members, doctors, medicare, insurance companies and anyone or anything else that comes their way.
These are the forgotten heroes. These are OUR heroes. We will leave them behind to pick up the pieces, rebuild and recover if they can. When you see one...be sure to let them know that you see what they are doing and that it is important and appreciated. Be quick to praise and slow to judge. Tell them what a great job they are doing. They need that in order to do what they must do.
To all my blog friend caregivers, you know who you are, I appreciate you. You're doing wonderful , great things. You are all heroes.....
Shaaky
Friday, January 29, 2010
COURAGE
The other day I was visiting my older brother and his wife. Sitting on the sofa talking about whatever......very pleasant. Although none of us siblings stay in touch as much as we should, as we have gotten older, we have all realized that there is a time stamp if you will...and we now talk more than we ever used to.
Although all four of us boys are different, there are some things that we have ALL had an interest in at some point in time. Cars in general springs to mind....one of us has had three or four Starsky and Hutch Torino replicas, one of us fooled around with a Chevelle and a pretty cool Torino back in the day. I am the die hard lifelong drag race fanatic and my oldest brother with whom I was visiting shares my passion for NHRA drag racing.
I remember once when I was racing a 67 Camaro there was some welding to be done and I had never done any welding....so he gave it a try and got the job done- without using a welding helmet. Burned his eyes pretty good, spent days with raw potato slices over his eyes trying to fix his eyes. The old days.....
I learned a lot from him....how to make a square braid keychain.....how to rot a muffler from the inside so that it sounds cool without buying a performance muffler (give us a break - it was the 60's).....how to body surf and live to tell about it.....Of course he became a Dad first being the oldest and he was a great Dad as his kids grew up and I just watched and learned....
Being the oldest, I guess I always looked up to him. He was cool. Very popular with lots of friends and as I grew up I turned out a lot like him as far as career choices, personality, etc. We even worked for the same company for a few years. At one point, he ran the starting line and I did tech inspections and ran the staging lanes at the local drag strip on the weekends. Remember the jet cars ? He would hit the start button on the christmas tree, turn his back and go into a fetal crouch while two jet cars kicked the afterburners and roared off the starting line inches away on either side ! Courage !
Yep, I learned much more than what it is written here and today....I am still learning and he is still teaching. We are more alike than we ever dreamed....You see, he has Parkinsons too....except with a cruel twist. On top of the PD there is multiple system atrophy. He really can't speak now...or walk...or eat (feeding tube) ...we communicate with a letter board where spells out words and sentences by pointing. We still talk drag racing and discuss whats going on in the NHRA and I keep him posted on my progress with my 69 Camaro.
As I sat there with he and his wife he still has that light in his eyes and a shit eatin grin on his face when he is amused by the conversation around him. While I was there he decided to show me the physical therapy exercises he does to try and slow the muscle deterioration. As he slowly raised his legs with the ankle weights strapped on or pulled against the rubber stretch cords while his wife held the other end and counted his repititions I was struck by the courage and determination it must take from him each day. And yet, he still has a grin and a thumbs up for me whenever I stop in to visit.
This people, is real courage. I hope he knows how much I learned from him over the years and how much I am still learning even now. As I said we are a lot alike. I don't think there is anyone else who can teach me what you are teaching me now....so keep teaching. And I will keep trying to learn and hope that I can be like you and have that same spirit and courage !
Shaaky
Although all four of us boys are different, there are some things that we have ALL had an interest in at some point in time. Cars in general springs to mind....one of us has had three or four Starsky and Hutch Torino replicas, one of us fooled around with a Chevelle and a pretty cool Torino back in the day. I am the die hard lifelong drag race fanatic and my oldest brother with whom I was visiting shares my passion for NHRA drag racing.
I remember once when I was racing a 67 Camaro there was some welding to be done and I had never done any welding....so he gave it a try and got the job done- without using a welding helmet. Burned his eyes pretty good, spent days with raw potato slices over his eyes trying to fix his eyes. The old days.....
I learned a lot from him....how to make a square braid keychain.....how to rot a muffler from the inside so that it sounds cool without buying a performance muffler (give us a break - it was the 60's).....how to body surf and live to tell about it.....Of course he became a Dad first being the oldest and he was a great Dad as his kids grew up and I just watched and learned....
Being the oldest, I guess I always looked up to him. He was cool. Very popular with lots of friends and as I grew up I turned out a lot like him as far as career choices, personality, etc. We even worked for the same company for a few years. At one point, he ran the starting line and I did tech inspections and ran the staging lanes at the local drag strip on the weekends. Remember the jet cars ? He would hit the start button on the christmas tree, turn his back and go into a fetal crouch while two jet cars kicked the afterburners and roared off the starting line inches away on either side ! Courage !
Yep, I learned much more than what it is written here and today....I am still learning and he is still teaching. We are more alike than we ever dreamed....You see, he has Parkinsons too....except with a cruel twist. On top of the PD there is multiple system atrophy. He really can't speak now...or walk...or eat (feeding tube) ...we communicate with a letter board where spells out words and sentences by pointing. We still talk drag racing and discuss whats going on in the NHRA and I keep him posted on my progress with my 69 Camaro.
As I sat there with he and his wife he still has that light in his eyes and a shit eatin grin on his face when he is amused by the conversation around him. While I was there he decided to show me the physical therapy exercises he does to try and slow the muscle deterioration. As he slowly raised his legs with the ankle weights strapped on or pulled against the rubber stretch cords while his wife held the other end and counted his repititions I was struck by the courage and determination it must take from him each day. And yet, he still has a grin and a thumbs up for me whenever I stop in to visit.
This people, is real courage. I hope he knows how much I learned from him over the years and how much I am still learning even now. As I said we are a lot alike. I don't think there is anyone else who can teach me what you are teaching me now....so keep teaching. And I will keep trying to learn and hope that I can be like you and have that same spirit and courage !
Shaaky
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