Today at work was a little different from most. My boss gave me a special assignment. My task was to spend the day with a new assistant general manger teaching her everything I could about business planning, profit / loss statements, financial analysis , etc. This assignment came my way because I am good at this stuff. Seriously...
One of the things I have enjoyed the most at my job over the last 8 years is hiring and training young people and seeing them grow and learn. In some cases, actually "grow up" as is the case with my own assistant manager whom I hired as a part timer at 17 years old and is now married, owns his first home and with any luck will one day take over my position.
Anyway, today was different. The new hire was a total stranger and I had no idea what to expect. As it turns out, she was , as she put it, a sponge, soaking up all she could in one short day. Eight years of experience on this job plus another 25 or 30 years of learning to think analytically and methodically. In one day.
Impossible ? Probably. But at the end of the day I felt that she "got it". She told me she got it. Said she got a lot out of our time together. I hope so.
My little daughters are like little sponges as well. Rielly-Anne, almost four, is very smart for her age due mostly to the fact that Mary "teaches" her things , encourages reading to her, imagination, and well, just plain works at being a great Mom. Now Cecilia has come along and we are both amazed at how fast Cecilia is learning. Faster than Rielly-Anne did and why ? Because she spends all day following Rielly-Anne around wanting to do the things her big sister is doing. Rielly-Anne didn't have that. Cecilia is taking full advantage of it though and learning at an amazing rate.
As parents we want to teach our children all about the world and about life and as toddlers and young people they are only too willing to learn. Then they become teenagers and think they know it all already...the willingness to learn is all but hidden amongst all the world has to offer them. Then one day you wake up and they are grown, gone, out on their own and the opportunity to teach is, for the most part, over. I know because I have them at every age !
As adults , most of us have realized that if you are smart, you never stop learning. You can learn something from everyone and I do mean everyone , you come into contact with each day. There are lessons we have learned that have taken some of us most of a lifetime to master. What we hope for is that we can pass this knowledge along to our kids in a more timely manner. For whatever reason though, the "sponge" is hard and just doesn't absorb like it did when it was new. Most times , grown children are listening, and years down the road they will say ...." you know , you were right about that " . I have said those words to my own parents. Usually right after I ignored some good advice and found out the hard way that I should have listened to them. Instead, we assume we know better or that "this is different" or "times have changed" or we simply aren't interested in the opinions of parents or others. And sometimes, a person just has to go their own way and as parents we get to warm the bench unless called upon. It's hard but you don't get a choice. Try as we might, we cannot save them from the school of hard knocks and experience.
It would be so much more simple if the older ones would still follow an adult around like Cecilia follows Rielly-Anne , learning all the time from a big sister....
Children, young or old can fall down and get hurt and for parents that is a frustrating thing no matter the age. When they are young a band aid or even a few stitches will usually take care of it. When they are grown, the stakes are usually a little higher.
In the end though, more often than not, young or older, the results are the same. They get through it, they heal up, they learn something and life goes on. What the parents of grown children have to learn is to have a little confidence, learn how to hold on "loosely" and remember that we made mistakes too. What we might view as a bad decision by our child ....well , we could be right.But it might be the right decision for that person at that time as well. Just because a decision has bad consequences doesn't mean it is a wrong decision after all. All decisions have consequences.
My decision to reverse my vasectomy and have children late in life had some major consequences. Some people have openly told us it was a very bad decision. But even though I am personally only too aware of some of those consequences in the form of Parkinson's it was not and is not and never will be a BAD decision in my eyes. Sometimes life is just like that. A good decision has some not so pleasant , serious consequences. Like I said earlier, we can ALL learn something every day. Today, I learned that while I might make a different decision than someone else given the same situation it doesn't mean either party made a bad decision. While there may be consequences with any decision those consequences or even the lack of consequences cannot define a decision as good or bad. Hindsight is always 20/20 and only time will tell. Too often we judge another person's decisions ( especially our kids ) when all that is required is that we support them be there if they need us.
I guess I had a really good day today. I learned something.
Shaaky
Wednesday, November 10, 2010
Thursday, November 4, 2010
Could she already be a year old ?
Referring to my youngest, Cecilia that is....She will be one year old on 7 November. Hard to believe but very encouraging. When Rielly-Anne was born ( she will be 4 on 30 November) I had just been diagnosed with PD. I was new to all that goes along with PD and frankly scared. I remember asking my wife if I would see her turn five. Of course she said I would...
There was no thought of Cecilia at that time. But here it is a year later....
Oh, we have taken a some hits for those two little decisions. Family and friends alike are divided on the wisdom of a fifty something Daddy with PD. To some it was irresponsible and foolish. Others cheer us on, happy for us and glad we are not allowing PD to determine or dampen our entire lives. In the end though, it was our decision and I really cannot find anything that would stop me from making the same choices if I had to go back and do it again. A lot of that has to do with the woman I married.
This week, I took Rielly-Anne to pre-school pizzazz at the public library. It is a little 30 minute class where the kids sing, do crafts and have stories read to them. There were probably 12 or 15 little ones there. I was the only Daddy though....
As I listened to the mom's chatter about homeschooling, interacting with each other I couldn't help think about how many kids there are out there in our area and only 12 or 15 here ? Those women are active in raising their kids. They are doing something special bringing them to these kinds of things. Now I have always appreciated how Mary raises our kids. She is a natural mother. But this day I began to realize just how committed she is to giving our kids a special childhood and wonderful memories and experiences. And somehow, she has dragged me into this....THANK GOD !
I have a very special and close bond with each of the girls that only comes from being actively involved with them from an early age. A few weeks ago I really paid a price to be involved. Rielly-Anne and I have been talking about camping out in a tent in the backyard for over a year. We finally did it. It was only 50 degrees that night and the ground was like a brick on my old body. She lasted until 2 AM which was way longer than I figured and I was happy to crawl in bed but the point is, we made a very special memory that night that she wil never forget.
I plan on making a lot more memories with both of them. Soon Cecilia will be able to talk. That is when Daddy gets really excited because I can communicate ! Already, she gets her point across and she promises to be a real handful, yet sensitive where Rielly-Anne is brash and full of energy and life.
There are lots of things going in this household these days. Changes. Big Ones. Life altering decisions on selling the house, where we will move to next, Mary's daycare business, my car building hobby...and all of that can be scary and stressful and hard but through it all there is one constant. Our family.
My wife and our kids are what matter most to me every single day and by our kids I am including our two boys from previous marriages. They play a very important role in all of this. In any case, it's late, and I have some snuggling to do with my little Cecilia who is waiting upstairs to roll over and cozy up between me and mommy. She doesn't know I am old. She knows nothing of PD. All she knows is that I am Daddy and she likes the hats I wear.
We will make memories my little precious. Lots and lots of them. And when you are grown you will remember me whispering in your ear every night...."Daddy loves Cecilia"
Good night
Shaaky
There was no thought of Cecilia at that time. But here it is a year later....
Oh, we have taken a some hits for those two little decisions. Family and friends alike are divided on the wisdom of a fifty something Daddy with PD. To some it was irresponsible and foolish. Others cheer us on, happy for us and glad we are not allowing PD to determine or dampen our entire lives. In the end though, it was our decision and I really cannot find anything that would stop me from making the same choices if I had to go back and do it again. A lot of that has to do with the woman I married.
This week, I took Rielly-Anne to pre-school pizzazz at the public library. It is a little 30 minute class where the kids sing, do crafts and have stories read to them. There were probably 12 or 15 little ones there. I was the only Daddy though....
As I listened to the mom's chatter about homeschooling, interacting with each other I couldn't help think about how many kids there are out there in our area and only 12 or 15 here ? Those women are active in raising their kids. They are doing something special bringing them to these kinds of things. Now I have always appreciated how Mary raises our kids. She is a natural mother. But this day I began to realize just how committed she is to giving our kids a special childhood and wonderful memories and experiences. And somehow, she has dragged me into this....THANK GOD !
I have a very special and close bond with each of the girls that only comes from being actively involved with them from an early age. A few weeks ago I really paid a price to be involved. Rielly-Anne and I have been talking about camping out in a tent in the backyard for over a year. We finally did it. It was only 50 degrees that night and the ground was like a brick on my old body. She lasted until 2 AM which was way longer than I figured and I was happy to crawl in bed but the point is, we made a very special memory that night that she wil never forget.
I plan on making a lot more memories with both of them. Soon Cecilia will be able to talk. That is when Daddy gets really excited because I can communicate ! Already, she gets her point across and she promises to be a real handful, yet sensitive where Rielly-Anne is brash and full of energy and life.
There are lots of things going in this household these days. Changes. Big Ones. Life altering decisions on selling the house, where we will move to next, Mary's daycare business, my car building hobby...and all of that can be scary and stressful and hard but through it all there is one constant. Our family.
My wife and our kids are what matter most to me every single day and by our kids I am including our two boys from previous marriages. They play a very important role in all of this. In any case, it's late, and I have some snuggling to do with my little Cecilia who is waiting upstairs to roll over and cozy up between me and mommy. She doesn't know I am old. She knows nothing of PD. All she knows is that I am Daddy and she likes the hats I wear.
We will make memories my little precious. Lots and lots of them. And when you are grown you will remember me whispering in your ear every night...."Daddy loves Cecilia"
Good night
Shaaky
Sunday, September 5, 2010
SLIP SLIDING AWAY
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...........
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...........
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.
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