MY FMS STORY
LIFE DOES EVENTUALLY GET BETTER
John Heald - husband, father & professional musician
The 80's were very good to me, but I wasn't very good to myself. My band, Armada, recorded and played all over the midwest and east. When I wasn't working with them, I had opportunities to tackle other musical endeavors and tackle them I did. Factor in a family, and another full-time job as a pharmacy technician, I was stretching myself pretty thin. When I started having neck & back pain I figured I just needed to slow down. That I did. First to a walk, and then as the pain increased, to a crawl.
I had never heard of Fibromyalgia, and it seemed as if no one in Michigan's medical community had either. After 5 different pain clinics, acupuncture, trigger point injections and three doctors at the facility where I worked, nobody could tell me why I was in pain or how to get rid of it. Slowly my ability to play my instrument eroded, and I eventually had to stop doing live shows. Then I stopped playing altogether. My ability to do my job came next, as I had to stand on my feet for practically my entire 10 hour shift. I did take medication, but nothing that was being prescribed seemed to do anything but make a small dent in my discomfort. Eventually, and after over 15 years of service, the hospital I worked for fired me. They really did an end around on me to do it, as I was really grasping at straws trying to keep my job. Looking back now I know I couldn't have kept going much longer, but at the time it seemed like the end of my world. Add to the pain and sleeplessness severe depression. My family lost our home, as even my wife's RN degree couldn't land her a full time job in the economically depressed job climate we were living in at the time.
You could say the 90's didn't start off all that well...
My wife eventually did find a good job...in Oakland, CA. We packed up everything we still owned and headed west, but I still had no answers. Unable to work and still dealing with chronic pain, Social Security Disability finally weighed in on my disability claim.
It was a resounding NO...
Having tried everything else I decided to go to Life Chiropractic College in Hayward. It's a teaching facility and had apparently seem similar cases. They found that Fibromyalgia was only the beginning of my medical problems, and that a major trigger was previously undiagnosed pedicogenic Cervical Spinal Canal Stenosis. Finally the pain had a face, and I actually knew what to call it. Certainly Social Security would have more than enough evidence to grant me my disability...
...no such luck. Time to hire a lawyer.
Even though the pain didn't disappear, and won't be leaving until I do, my doctors at LCC did effectively find a way to help me manage the pain. Gradually I began to be able to do more by taking small measured steps, and my quality of life began to get a little better. My lawyer, with the help of LCC, eventually was able to successfully win my rights with Social Security. From beginning to end it was over a two year process. That was 8 years ago.
Flashing forward to 2003, life is for the most part quite the same... only better. My family has relocated to Los Angeles, and I continue to manage the pain. I also still average 2-3 hours of restful sleep, lots of trips to the pharmacy and the Chiropractor. I looked long and hard to find a great chiropractor in Dr. James Gustin D.C. I was also fortunate to find a physician here, Dr. Kathleen Waltz, D.O. She not only acknowledged my condition she, in fact, did several teaching inservices (during her residency) about Fibromyalgia. She refered me to pain specialist, Dr. Michael MineHart, M.D. What a difference life is when everyone is on the same page and of one mind! I have hope again, not only spiritually but scientifically as well! It has been a stark contrast to the others I have had to deal with in Michigan and since moving to California, most of which didn't believe the condition was even viable. My wife, Darlene; who has been a great support to me over these years, reminded me not long ago that as recently as a decade ago alcoholism was scoffed at by many medical professionals as a "disease". Things do change over time, and enlightenment is possible (...even for doctors!). One can only hope that one day others who must cope with FMS and chronic pain will not be dismissed as hypochondriacs or liars. At times one is tempted to say "If you could only walk a mile in my shoes", but I wouldn't wish this on another living soul.
I am, once again, singing and playing music...on my own terms, and with more success than ever. There's not a lot of money to be made playing what I like to play these days, but that isn't why I make music anyway. Fortunately I have been blessed to be able to write and create with musicians who don't care if it takes much more time and effort for me to record. One of the bands I play with, De Allen - a Los Angeles based melodic metal band, released their second CD "Deceptions of Reality" in February of 2002. It took over a year to complete, much longer than our first ("Twisted Inside") did in 2000. My new band, Ariel - also based on the west coast, will release our new CD early in 2004. This project is especially dear to my heart because I've been blessed to be able to work with my son, Will.
Even though I my best playing days are behind me, I am very pleased and proud of what I've been able to do in the last 4 years. No one, especially me, ever expected that I would play again. I'm just thankfull no one in my band, or at the record label, is expecting me to tour to promote these projects. I simply couldn't do that...
right now anyway ;^)
Someday I hope to feel well enough to play a show now and then. However, if life has taught me anything through this experience it's to play with the cards I've been dealt. I can wait for that "full house" from the "dealer", as I know it's just a matter of time. Right now I'm enjoying the time I've had with my kids. I'm even living a bit vicariously through my 12 year-old son, Andrew, who is an actor here in Hollywood. I've been learning new things daily about the acting side of the entertainment industry...and about "stage parents". Now I can say I've seen just about everything :^O I'm proud of my other children as well; Will, Dayna, Jeanette & our ward Tiffany. They have been instrumental in their all out effort to get me through this. I probably wouldn't be here without them, or Will's family; his wife, Virginia, and my grandchildren, Charlotte, Jennifer & their baby girl that's still on the way.
I am also gradually rebuilding my faith in my Lord, Jesus Christ. My entire belief system took a beating, and I became more cynical during much of the last decade. For a time I wouldn't allow myself to believe... But... God said He wouldn't give us anything we couldn't handle. I thought my situation really sucked, and I just couldn't or wouldn't buy into that. Even so, I tried to hang on to that promise. Now, years later, I cannot only see but also say matter-of-factly that I was VERY wrong in that assessment. It's been difficult, but God helped me handled it through Him, my family and my friends. God can and will do the same for you. All you need to do is ask :^)
The new Ariel CD (as yet untitled) will be dedicated to the memory of my mother - C. Jeanette Heald - who passed away in December 2002. She was the most supportive and ardent "fan" I could ever have hoped for. She was also a rock with regard to my medical condition, and gave so much more than I could ever return. She is greatly missed by us all.
Click below for links to other FMS sites and other accounts of living with this condition
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