Saturday, March 15, 2014

Starting to plan the next Phil's Jam for FSH.

Phil's Jam for FSH started out as an idea I had many years ago. My idea was to have some of the best Singer/Songwriters I know to get together and entertain and at the same time, raise money for research into the cause of fascioscapulohumeral dystrophy. The most common form of muscular dystrophy, and the form that I live with everyday.

I approached a few other organizations about helping me organize, but it was the FSH Society that made the most sense. Then last year my Sister-in-law read my blog and offered to help me make my dream a reality. Lori has worked as a fundraiser for years, so needless to say I was thrilled. After visiting countless restaurants, venues and facilities, Julie at the Wild Wing Cafe stepped up and said, "Sounds like fun!" That's how my first fundraising event was born.

Now that the first Phil's Jam for FSH is over and done, I have a ton of people to thank.

First of all, let me thank all the entertainers who came out and really put on a great show. Anna Johnson Band, Maureen Murphy, Joel Shewmake, AJ Engstrom, Destinee Quinn, Lee Akers and a special guest songwriter Bernie Nelson. I also want to thank my family, friends and anyone who donated time and/or money to the event.

With that out of the way, we are already planning the next. July 13, 2014 is the date for the next Phil's Jam for FSH. I will be posting much more about the event in the coming month. I am just now starting to line up the entertainment.

Keep the faith everyone. Remember how blessed you are!!

Phil

Thursday, January 16, 2014

Phil's Jam for FSH fundraiser

If you read my posts, you know that I have a form of muscular dystrophy called FSH. The FSH Society has funded some of the best research for FSH and will soon have a treatment or a cure. In the meantime, I am doing my part to raise money for this research.

Phil's Jam for FSH is the very first fundraiser I have had and I am very excited about it. I have hand picked some of the most talented artists I know to entertain you and help raise funds and awareness for the FSH Society.

For more information about the charity, go to FSHsociety.org. Don't miss this awesome night of music!!

Thank you all,

Phil

P.S. To make a donation, send me an email at songmaker11@gmail.com and I will make the arrangements.

Thursday, December 26, 2013

30 years ago today!!

I want to share my most memorable Christmas ever.

It was December 25th, 1983 and it was about 17 degrees outside and snow was on the ground. It was about 3:00 pm. My wife and I were at my in-laws opening up presents when my wife felt this strange feeling. She took the present she was opening and laid it on the floor and ran to the bathroom only to find that her water had broke. She was huge and we were expecting the baby any day now.
We immediately gathered everything we needed and rushed to the hospital.We arrived and was escorted to the maternity wing of St. Mary's Hospital in St. Louis. We finally saw the doctor and he said we would probably have to induce labor since she wasn't having labor pains yet. So, they proceded to do just that. I'm told that induced labor is the hardest to endure, but my wife was a real trooper.
 
Slowly through the evening the pains started and got stronger and stronger. In between pains we listened to the Christmas music that the hospital had playing overhead and we also watched TV. Midnight came and went and so did the Christmas music.
 
In the wee hours of the morning, the doctor came in and checked saying we should go to the delivery room now. I dressed in scrubs for the first time in my life and met them there. As I held her hand and coached her as we had been taught in class, she finally pushed out a beautiful baby girl.
The nurse immediately cleaned her and wrapped her in a cotton blanket and handed her to me. I sat in the chair just beside the hospital bed and held her in my hands. Our eyes locked. She looked at me as if we were long, lost souls that hadn't been together in decades. Maybe that is the case. I could not take my eyes off of her and she was the same. We stared at each other for what seemed like eternity while the doctor finished with her Mother. I will never forget staring into those beautiful blue eyes, counting her fingers and toes and holding this precious angel I had just been given.
We named her Cagney Michelle and she turns 30 years old today, but I can still remember it like it was yesterday.
 
The day I was given an angel for Christmas.
 
Merry Christmas everyone!!

Friday, December 6, 2013

Christmas harmony...

This is a picture of me sitting with my Mom and Dad. I was about a year old I think. I don't remember that early, but I will share a wonderful memory from when I was 4 years old. It would prove to be a monumental moment in my young life.

It was Christmas time and I remember we had just put up the tree. I remember the lights were down low so the lights on the tree lit the room with that familiar Christmas tree glow. Then Mom and Dad started singing Christmas carols. The one song I remember them singing was Winter Wonderland. It was the first time I heard people singing harmony. Now I cannot remember who was singing the lead or who was singing harmony, but I remember thinking, "I want to learn how to sing harmony."

To this day, one of my favorite things to do is sing harmony. Singing in church with my family and singing in church choir helped me hone my harmony singing skills. I also was able to hear the parts at a very young age. I sang in a barbershop quartet in High School and vocal quartet in my 20's and 30's.

I have studied the great harmony singers and tried to emulate their style. One of my favorite singers is Vince Gill, but some people don't know that he is the most amazing harmony singer. Through the 90's and beyond, he has lent his harmony to thousands of recordings. I learned a lot from listening to him.

But I owe my love of harmony to my Mom and Dad and that wonderful Christmas.

Merry Christmas everyone!!! May your holiday be filled with harmony.

Phil

Monday, November 4, 2013

Shameless self promotion...

I've been taking a break from songwriting for a month or so, but I keep waking up with songs in my head. So even though in the waking hours I am not focusing on songwriting, in my sleep I am still writing music. In the meantime, I have been climbing up the reverbnation charts. I guess people have been listening to my music. That makes me happy. Guess it's time to get back to work and finish some songs. Peace, Phil

Saturday, October 26, 2013

Do it anyway...

The verses below reportedly were written on the wall of Mother Teresa's home for children in Calcutta, India, and are widely attributed to her.

People are often unreasonable, irrational, and self-centered. Forgive them anyway.

If you are kind, people may accuse you of selfish, ulterior motives.

Be kind anyway. If you are successful, you will win some unfaithful friends and some genuine enemies. Succeed anyway.

If you are honest and sincere people may deceive you. Be honest and sincere anyway.

What you spend years creating, others could destroy overnight. Create anyway.

If you find serenity and happiness, some may be jealous. Be happy anyway.

The good you do today, will often be forgotten. Do good anyway.

Give the best you have, and it will never be enough. Give your best anyway.

In the final analysis, it is between you and God. It was never between you and them anyway.

I posted this in October 2009, but I thought it was worth reposting. Focus on the good in your life. And if you don't feel like it...do it anyway. :)

Peace,

Phil

Thursday, July 11, 2013

My Grandpa didn't know what FSHD was...didn't let it stop him

Let me introduce you to my Grandpa Vance. He was my Mother's "Daddy". I've heard stories my entire life about all the things he did. He was an entrepreneur, carpenter, salesman, role model, volunteer, business owner, mentor, farmer, fisherman and much more. He never let anything stop him...not even FSHD.
My Mom told me about how he built the house she grew up in as well as at least 3 others. He also built a dam in the creek behind their house by hauling huge rocks one at a time and setting them into place. He built a giant outdoor fireplace out of granite blocks. He did all of this without the help of a forklift or a bobcat. He did it all with his bare hands and also while having FSHD; a form of muscular dystrophy.
When I look at the picture from the newspaper, I can't imagine how he was able to pick up and load 50-60 pound pumpkins to take to  the market. He must have had incredible inner strength to deal with the limitations of FSHD. I have a feeling that he didn't let anything limit him.


I have often thought of him as I too have FSHD and have learned to overcome the difficulties of this disease. I have said to myself many times, "If my Grandpa can build a house, I can certainly climb these stairs."
 I wish I could have spent more time with him, but unfortunately he died in a car accident when I was 9 years old. He probably didn't know he was an inspiration to many and I am sure he didn't know he would still be inspiring me 40 years later. I am in awe of what he accomplished in his 65 years, with or without FSHD.

So when people said, "You have what your Grandpa had", I hope they are right!




This is one of the many houses he built.

This is the dam he built...amazing!

He also knew how to have fun.

Thanks for reading my blog. Feel free to share this post. To learn more about this disease and the fight to find a cure, click on this link or go to www.fshsociety.org.
 
Peace,
 
Phil

Thursday, June 13, 2013

What is FSHD? My story of hope.


     I first started noticing muscle weakness in my shoulders when I was 16 or 17 years old. Prior to that I thought I was just a normal teen. However, I never understood why I couldn’t run as fast as the other guys or why I couldn’t do sit-ups or pull-ups. I just assumed I was a weakling and needed to exercise more. I got made fun of because I ran so slow as early as I can remember. The thing about FSH is it progresses so slowly, you don’t realize you have lost another muscle until you go to do something and realize you can’t do it anymore. Atrophy is a word I'm very familiar with.

     Example: When I was in my early twenties, I loved to hunt, especially bow hunt. I loved archery and was actually a pretty good shot. One early morning I am in the woods and finally called up a couple turkeys. Now wild turkeys are the most challenging to hunt and I always wanted to kill one with my bow and arrow. Well I finally had my chance. I called up two turkeys and when I thought they were close enough, I pull up my compound bow and I couldn’t pull it back. I did not realize until that moment that my shoulder muscles that are required to pull back the bowstring were now gone. That ended my archery career.

     The same thing happened when I joined a work softball team in my mid-twenties. I loved to play softball and was pretty good at it when I was younger. Well, I go to our first practice, get up to bat and hit the ball to right field. I was excited because I wanted to do well, but when I take off to first I realize that something is wrong. I am really having a hard time running. Well, long story short, I got thrown out at first base by the right fielder. Now guys on a softball team can be brutal and I found that out immediately. I pretended to have hurt myself because at that point in my life, I was embarrassed and had no clue what was going on with my leg muscles. That ended my softball career.

     So with two things I loved to do out of the picture, I decided it was time to see a Doctor. I started with my family doctor. He referred me to an orthopedic specialist who referred me to a Neuromuscular Clinic. I finally get an appointment only to be poked, prodded, stabbed, twisted and turned inside out without a diagnosis. They needed to run more tests, but they thought I had some form of muscular dystrophy that they had not seen before. I was not in the mood for more tests!

     I’ll back up a bit and give you some family history. My Grandpa on my Mother’s side had similar issues, but never went to the doctor. My Uncle on my Mother’s side has similar muscle weakness as well. “You must have what Grandpa had.” is all I ever heard from Family when I started having problems. Well I did not accept that as a diagnosis and was bound and determined to find out what was wrong and hopefully get it fixed.

     It wasn’t until I was in my late twenties that I finally found a doctor in St. Louis that told me what I had. He said most likely I had Fascioscapulohumeral Dystrophy…FSHD for short. That’s when I learned that they did not know what caused it and there was no treatment at all. So I just learned to live with it like Grandpa did and my Uncle Richard does. I was fine! Who needs to run anyway? Who needs to shoot a bow and arrow anyway? At least I was healthy and could still play golf…right? At least I can still play guitar and play the drums…right?

     In my thirties I started noticing weakness in my abdomen, forearms, legs and feet. I could not raise my arms over my head anymore. Climbing stairs became harder and harder. I started tripping and falling a lot. The problem was, once I tripped and fell down, I could not get up off the floor without the help of a chair or solid surface. Also the muscles in my abdomen weakened to the point where it looked like I was pregnant. Meanwhile I stayed positive and hoped that someday researchers could find out what the hell caused this disease and give me some sort of hope for a treatment.

     In my 40‘s, I noticed the progression slowed considerable. Even though I can barely climb stairs, cannot play my beloved game of golf, run or play ball, I am very blessed. I still play guitar even though muscles in my hands and forearms cause problems. I pretty much gave up playing the drums mainly because it’s too hard to carry all the equipment. I am blessed!! Even though my disease has brought me to the point where I cannot continue working as a Medical Equipment Technician in a hospital environment, I never give up.

     Two months ago I made the difficult decision to apply for disability and was approved. Luckily my company offered short-term disability. After using up all my personal days and about to run out of company-sponsored short-term disability benefits, I get a phone call from Human Resources. They asked me if I would like to interview for a job as a Diagnostic Cardiology Technical Support Engineer. Now this is the job I had been trying to get for 3 years. Four interviews and two months later, I land the job. My start date was the exact date that my short-term disability benefits were set to run out. I work from a home office, no commute, nice raise, no tripping and falling in the halls of the hospital, no people staring at me wondering what is wrong. My dream job. I am glad I never lost hope.

     You see I have fallen down so many times in my life, but I always got back up. If you give up mentally, your body gives up as well. I will never let my muscles tell me I can’t play the guitar. That is one love I will never release. These days I find myself in awe of what can happen if you keep the faith and never lose hope.

     If you have read this far, I’m impressed. I would like to tell you about a great organization, the FSH Society. FSH Society, Muscular Dystrophy Association, Friends of FSH Research and many other organizations, have funded research that has made great strides in the last 10 years. We now know what gene or set of genes is causing the problem. They have just recently developed a mouse model for treatment research. Things are looking good for a treatment or a cure in the next 10 years.

     FSH Society is a wonderful charity...please take time to visit their website and donate.
My current goal is to start raising funds for their research. I would love to have a fundraiser here in Nashville, TN. Drop me a line at songmaker11@gmail.com if you would like to help.

Thank you for reading my story. Like Dr. Wayne Dyer says, “Don't let your music die with you.” Never lose hope.

Phil Bennett

Wednesday, May 29, 2013

What I have learned in my 49 years, 11 months and 29 days...





Well as I approach my 50th birthday, I have been pondering all the lessons I have learned so far in this life. So in no particular order...here it goes. Remember these are lessons I have learned...my opinions only.

1. Never forget that life is good! If you ever want to know what it's like when life is bad, take a day trip to Saint Jude's Hospital. Take a minute out of every day to give thanks.

2. Help those in need and always give a buck to that guy on the corner holding a cardboard sign. (Unless he is wearing nicer shoes than you.)

3. Tell your Mother that you love her. My Mom is basically perfect! She taught me to smile, laugh and always keep a positive attitude. Listen to your Mother...that's a great life lesson!

4. Sometimes good guys have to hurt people. I'll leave that up to your interpretation. There are a million country songs in that life lesson.

5. Pain may be inevitable in this life, but suffering is not.

    6. Babies are the closest thing to heaven. I just learned this one after the birth of my first Grandbaby. I remember thinking, "The last thing this baby saw prior to being born was GOD."
 
7. Laughter is the only medicine.
 
8. You never regret things you do, you always regret the things you don't do. Don't be afraid to take chances.
 
9. Success is not measured in dollars and cents.
 
10. Don't die with your music still in you. I borrowed this from Wayne Dyer.

 Finally, #11 life lesson...Guys, love your woman!! They put up with so much, the least we can do is love them and treat them great.

Here's to another 49 years. I might even be smart by then...who knows.

Peace and love,

Phil

Joel Shewmake singing "Family Man"

Quote of the year...

“Be not the judges of men, but love your brothers and sisters, and find ways to reach out to them in common goals and aspirations. Where there is love in common, the divisions of creed will melt away and reveal the true nature of man’s eternal destiny -- one of unity in purpose, to be perfect as the Father is perfect."

Author Brilliant but Unknown

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"Ashokan Farewell" by Jay Ungar

"The Third Day" a short story by my daughter Cagney Bennett

"The Third Day"

It was raining outside.

The raindrops covered everything as though they were cleaning, washing away the sin of the earth. He came to my door. The rain had covered him like a blanket. It hid his tears, his grief. But I could see.

We didn't speak. I stood in my doorway and him on the porch and we looked at each other. I don't know when, but I started to cry. Sobbing, for the entire world to see. I wanted to make him understand. I just stood there and watched him. He nodded and slowly put out his hand. I reached mine across the threshold, to grab him and pull him to me. He was gone.

I can't sleep.

I keep all the lights on and sit on my bed. When I close my eyes, I see the same scene. Playing over and over in my head. My mother tries to comfort me, but she doesn't understand. She can't comprehend the guilt I am feeling. She tells me,

"You need to move on. It's not healthy to be so upset over something like this. It happens. And you've got to keep living. Just remember the good things."

I don't answer her when she tells me this. I pretend not to hear. I stare at her, letting her glimpse my pain. Finally she gets exhausted over this battle and leaves me in my grief.

And it's only the first day.

The next day my mother tells me I have to go to school. Being with my friends will make me feel better. I go to my first class and I feel that all eyes are on me. Even if it isn't true. My friends give me sympathetic looks and hugs all day. Those comforting throw-away words are said in my direction through out the day. I don't listen.

At the end of the day, my best friend grabs my arm and pulls me aside.

"You look like crap. Seriously, I don't mean to be blunt but, wow, I'm seriously worried. Do you need someone to talk to? I'm here to listen. I bet you have a lot of stuff to get off your chest." I tell her I don't want to talk about it.

"Here's another alternative. Try writing. It'll help, I swear. But I want you to call me and talk whenever you want. OK?"
I nod in her direction and start to walk away.

"Wait! I gotta know, will you go?"

I don't answer. I just keep walking.

Luckily the house is empty when I get home. I go upstairs to my room. Lying on my bed is a picture that I've never seen before. It is me and him talking with our heads bent towards each other. His arm is around me, pulling me closer. And I'm smiling contently. Where did this picture come from? I feel tears in my eyes start to fall. Can't think about it. Don't think. Please don't think.

I drop the picture on the bed and go take a shower. I turn the water as hot as it will go. Perhaps in hope of scalding me. Let my pain be compared to his.

After my shower, I go back to my room and put the picture under my bed. I sit on my bed for a while and then get a notebook.

Dear you, You took my heart and I want it back. How dare you hurt me like you did...Dear you,I miss you. I love you. I'm sorry. I want to hold you once more...Dear you, One day I hope you receive this letter. I want you to understand the pain. How much I ache for you. I can't even write the anguish I feel. Why can't we be together? I miss everything...

I throw the notebook across the room in disgust. There was no hope in letting out my hurt by writing. I'm not ready for it. I fall back on the bed and wearily close my eyes. Sometime later, my mother comes into my roomand covers me up, but I don't try to fully wake up. Let me sleep in my dark abyss.

And it's only the second day.

When I wake the next morning, it is raining. I have an intense feeling of déjà vu. My mother comes in with two pink roses.

"Do you know what you're going to wear? I have a couple ideas. I thought you could take these roses. You can do whatever you want with them. Do you want me to come with you? I'd be happy to."

I shake my head and thank her for the roses. She gives me a hug, causing my tears to start again. After she leaves, I attempt to find something to wear. The clothes blur together and finally I grab something black and put it on. With my hair up in a bun, I don't look like the girl I used to be. Pain has etched lines in my face and the black dress makes me look paler than I already am.

As I leave the room, for some reason, I grab the picture from under the bed and take it with me.

I am standing in front of the box. The only thing that remains of him on this earth is this box. I watched it be lowered into the ground.

"Dear you, "I say quietly, "You are the earth and the sky to me. You are the air that I breathe. You brought my cold heart to life with your love. Not a day will go by that I will forget your smile, your touch, your words. I will never stop saying praise to God for bringing you to me. I've lost my other half.Good-bye.Love, me"

I set the pink roses and the picture of us on the coffin. I let myself cry one last time. Then I walk away.

And it's only the third day.