Barry Manilow Has Still Got It!

Flashback:  I'm 17 years old.  It is the summer of 1978.  I'm in between my junior and senior years of high school and I'm in Provo, Utah at Brigham Young University (BYU) Girls' Basketball Camp.


I was there with my friend Kathy Gillespie.  We stayed with my grandparents Bill and Pearl Griffiths in Orem.




That night I was up walking in my sleep, running basketball plays in the hallway outside of my Grandma's bedroom....that dark, long night in Orem, Utah....a 34 year old Barry Manilow was playing in concert at the university.  I was so envious that I could not go see him but I had to focus on making it out of basketball camp alive and apparently my psyche was concerned, thus the midnight hallway basketball game that scared the crap out of my Grandma.




Flash forward to last night, 36 years later I FINALLY got to see the now 70 year old Barry Manilow in concert in Orlando, Florida and it was AWESOME. Hubs won tickets on the radio....105.9 Sunny FM....sweet seats in a Founders Box.  The music was fabulous.  Barry was fabulous.  His voice hasn't lost a bit of its sweetness.  He can still hold a note for 7 days straight. He is still a fabulous musician and he is still really funny.




Payday came and went with no deposit for some unexplained reason so we drove there with a quarter tank of gas hoping it would last.  It did.  (Thank god). Both of us slept all day to get to the point where we felt well enough to leave the house for a few hours.  We had the sideways quizzing trying to evaluate who felt better to drive and we agreed that we would leave early if we started feeling worse (as we had in November at the TransSiberian Orchestra Christmas Concert).




We did a lot more when Walt was healthy and it was only me with ME/CFIDS.  I knew that he could drag me home if I collapsed and he was level, very level so there was just no worry.  Not now. Now there is much worry and both of us are very ill so it is a miracle beyond miracles when we actually coincide feeling well enough at the same time to do something like this concert.




Our seats were in a Founders' Box and we could stand up and move around which has become an essential part of any event including just going to a movie. We have to frequently change positions, from sitting to standing and frankly I'm on the verge of bring a cot with me everywhere so I can lie down too.




But Barry....oh Barry....he wasn't messed up at all and for a few moments in a few songs I was back in my younger days listening to that music, usually at a school or church dance, which I inevitably flowered the wall.  Such is the life of a skinny, tall girl from the other side of the tracks in a teeny, tiny, rural Wyoming town.  But the music....it was awesome, dancing or not.




Every time I get to see one of these old performers I feel grateful to get to see them one more time.  These concerts though.....especially now that we are on disability and could never afford the tickets....they seem very opulent and I think that we (I) have been very spoiled in so many ways.  There was a day when my former husband and I chose to use grocery money to go see REO Speedwagon and then later Bob Seger.  Even while we were just scrimping by on tips and minimum wage.  How did we do that?




So here is the Barry of yesterday - as in just yesterday....looking good dude and.....









Here is the Barry of 1978....

Not too shabby Barry.  Not too shabby.


My hope and prayer is that a cause, treatment and cure are found for this awful illness that Walt and I have.  And Barry reminds me of the message that always came from both my mom and my dad that music is a fundamental part of happy.  So I sing every day.  I hum to increase the nitrous oxide in my system.  I sing Do-Re-Mi for respiratory therapy and I try to learn and record a new song every week.


I just know this:  it is possible to be in incredible, unresolvable pain and still have fun.  Happy is not a constant but it is usually found in song and laughter in my life.  Especially laughter.


Mr. Manilow has started a foundation that gifts old and forgotten musical instruments to the schools around the US that have still, somehow, managed to hold onto their music programs.  If you have an old, forgotten instrument in your attic or basement, even if it is broken, consider donating it to his foundation....for the kids......for the Barry Manilow in the second grade right now who needs that chance to shine.  Here's the link:  The Manilow Music Project


Peace be with you and all that jazz.....

Forfeit: Playing With Less Than a Full Team

Thus far, in my posts, I have written about fun and interesting events that have and are happening in this nomadic lifestyle we live. I have had a break from really having to deal with the intensity and profound difficulty that I have living life with disabilities. On one hand, that I am disabled and have the disability benefits that I have, makes it possible for us to be doing what we are doing. On the other hand it creates daily, life altering challenges.

I have good health insurance.  I have a small, but dependable income every month. I am able to work if I feel well enough to do it. These are benefits that help us immensely and basically set the framework for Walt to be able to be a consultant.

The reason I have these benefits is that I have disabling illnesses. The Fibromyalgia and CFIDS (Chronic Fatigue/Immune Dysfunction Syndrome) bring intense pain and fatigue into my life that is usually attached to no cause in particular. The immune system dysfunction simply means that my body will typically overreact or underreact to illnesses.  I have an auto-immune platelet disorder that has caused two hemmorages in the past. I have hypoxemia - a pulmonary condition where my lungs don't saturate with oxygen properly at alitudes over 4800 ft. I have an irregular heartbeat and Type II Diabetes. I have Bipolar I disorder and PTSD. I have Tardive Dyskenesia, a permanent syndrome of involuntary movement caused by the drugs taken to treat mental illnesses. And I have the condition that originally was the basis for my Disability: Degenerative Disc Disease in my lower back and arthritis.

I am 51 years old and on my good days I feel pretty good for being 51. On my bad days I hope I don't have to keep living until I am 80 or so. I just can't imagine another 25 or 30 years like that.  The illnesses are like being on a physical and emotional roller coaster, exhausting in and of themselves, but together too much to cope with.

There are other metaphorical scenarios that people use or have develped that attempt to describe to others what it is like living with these challenges. I have developed what I call the "Forfeit Rule". based loosely on how a basketball team would function. It transfers from my experience playing basketball in high school and college, and pick up games later on.

Basically it goes like this: For those of you who don't know, a basketball team on the floor has 5 players. A team can still play with as few as 3 players. But if they only have 2, 1 or 0 players they forfeit the game and the other team automatically wins.

In my life, since my back injury, the whole team of 5 players never shows up.  The best that it gets is that 4 players show up. On those rare days I am like a woman possessed. I multi-task and move from task to task at lightening speed because I know that having the 4th player there is the exception and won't last.  I recognize when they are there and try to take full advantage of having access to that.



The average is 2 1/2 to 3 players. In my world you can play a game with 2 1/2 to 3 players. Those days I get dressed and chip away at the day one task at a time. With this number of players I can usually patch together something of a day that is somewhat functional. I do a pretty good job of basic self-care at this level - as far as dressing, showering, eating, but not so good with exercise and cleaning and such. If you ever see me out walking or exercising it means that 3 to 4 players showed up that day.



When only 1 player shows up I call a forfeit. I do not even try to do the day. I eat, rest, take my meds, take the dog out and rest. That is a forfeit day.





There are days when 0 players show up and those are the days I am in the hospital. More frequent than the average person, I would say, but still not my norm by any means.

I know that finding a way to write about how I cope with living with these illnesses is critically important to my own process of healing. I am still not certain that my perspective and experience around my health challenges is interesting or useful to anyone else but I know it is useful to me. It has become important to me that I show up in my world as the true me. I have come to realize that it serves to foster stigma when I keep my experiences to myself. I need to be validated by those important to me and yet I don't give them enough information to adequately do that.

I will continue practicing on those who love me. I hope you will hang with me as I cast about for the perfect balance. I want to share enough to foster understanding and empathy but not cause too much stress or discomfort. I am not on a crusade to teach people about the stigma of any of these illnesses. I am on a crusade to live my life to the absolute fullest within the parameters that I must work within.

Copyright 2012 - Chardale Irvine.  You may not publish or reprint this article without permission of Chardale Irvine.  Thank you.