Drawing on my experience as the adopted infant daughter raised by two wheelchair bound parents, I write inspirational and humorous true stories from childhood. I also share my own survival experiences while coping with multiple chronic illnesses. Coming from a family of survivors, I hope that as you read my stories, you will laugh a lot, cry a little, but always come away with something positive. I've only scratched the surface of telling true stories of a very unique life!
At any moment of any given day I can go online and find support groups for any illness or cause. There are MILLIONS of them. Chances are, each one I will find has all kinds of artwork, clever sayings and symbols that will direct me to take a look at any issue at hand. If the cause you are trying to bring to the public’s attention is complex and difficult to understand, it’s even more difficult to raise awareness and bring attention to your cause that is positive and productive.
Fibromyalgia Awareness is one of those very complex causes. Because no two patients have the same exact symptoms and FMS symptoms are so numerous and vary so much in intensity, I often describe FMS patients, treatments and the impact on their lives to be as unique as a fingerprint.
Not long ago, I happened to come across a comment under a piece of artwork supporting Fibromyalgia Awareness. This is what was stated:
All of us with Fibromyalgia are aware of what we go through. It's the rest of you who need to learn about how we suffer on a daily basis.
As I read this comment, something about it bugged me. I mean it really unsettled me and I wasn’t sure why. Was it that the statement was somewhat defensive or accusatory? Was I feeling anger? Sadness? Confusion? I was so unsure! I couldn’t figure it out!
I don’t mean to be judgmental of the writer. The writer had their reasons and feelings for phrasing this statement in this manner. There is no right or wrong in the statement. We are all entitled to our opinions and our feelings. Feelings are never “wrong”, they are just feelings. Emotion. It’s what we DO with those feelings that can be considered appropriate or inappropriate behavior.
One could ask themselves: “Whom was the writer referring to when they stated the rest of you?” Obviously it meant everyone without FMS, but could it be a family member who hurt them? A friend lost because of the impact of the disease? A spouse who left them behind?
Then I found myself asking another question: “What was the writer trying to accomplish?” If it was awareness, it wasn’t going to be received well. So perhaps they were not trying to accomplish anything. Maybe the writer was just hurting and this was the only way they could express themselves at that time.
As I sat pondering all these questions, the original feeling I had kept pestering me. Why does this statement bother me so much? It was literally driving me nuts. No, I’m not obsessive compulsive, but this was really getting to me. Then it hit me.
I lived in silence for a period of time after being diagnosed. I tried to hide my illness and live a normal life. But the problem was I tried to live the life I had before my wreck. I was trying to be just like everyone else. But I wasn’t like everyone else anymore. I was no longer a member of the “Healthy People Society” or as I have come to call it, the HPS. I use that acronym because it fits so many different circumstances and still applies. For example, I’ve encountered the “Haughty People Society”, the “Hurtful People Society” and the “Hopelessly Pathetically Selfish.” That’s just for starters. I’ve had many different encounters with HPS’s when it comes to my disease.
It is a fact that FMS patients live with chronic pain every day. If it isn’t pain, it may be the relentless fatigue, or migraines, or nausea, or IBS, or sleep deprivation, or severe depression, even panic attacks and medication sensitivities. All these different symptoms combine to make a very difficult disease even more difficult to manage. My point being it’s always something, and its always every day.
It was clear after my diagnosis that the days of “just push through the pain and do it” were forever gone. I can push to a degree, but not without paying for it later. Instead of pushing through the pain, I would have times where I was forced to change my plans at a moments notice. Specifically, changing plans at the most inconvenient, embarrassing, once in a lifetime or turn on a dime moments. Maybe it’s a migraine attack, or any one of the numerous other sister conditions that this disease brings with it. Whatever the source may be, rest assured, if the conditions at that moment is bad enough that I have to change plans, it means I stop and rest or I risk being laid out on the pavement.
It took a long time to wrap my head around that fact. I grieved and hid from the world for awhile, just so I could avoid being put in that position. I was so depressed and lost I shut myself away for 2 years and told myself it was safer than putting myself out there for the world to reject.
But then I realized, unless they find a cure, I’m going to have this disease for the rest of my life. Is this how I decide to handle it? Me. The daughter of the most independent paraplegic anyone could have the honor to meet. The guy who rather than miss a day of work, drove my sisters car using a crutch to work the gas and brake pedals when his handicapped equipped vehicle was in the shop for repair. Possibly the most determined man I’ve ever known. Would his daughter become known as a “VICTIM”!?!
NO! TOTALLY AND UTTERLY UNACCEPTABLE!
Things would simply have to change in my life.
Now, I’m sympathetic to the writer of the original statement. I’ve felt the bitterness of lost friends and the rejection of people I wanted to share time with, but because of a form of HPS the relationships could not survive. I’ve experienced feelings of not being “good enough.” I’ve grieved HARD over the loss of my career and the hopes and dreams that I had planned to enjoy at this stage in my life.
Used by Permission of Artist/Writer: Manuela McPhee
FMS certainly wasn’t part of my midlife crisis! I was suppose to enjoy the freedom of having grown kids! Or deal with empty nest syndrome, or share time with my sons and their girlfriends so I would be prepared for the day my boys would marry and have children of their own. I wanted to travel with my husband. Just the two of us!
It was very clear that unless I made those near to me aware of my disease, I would continue to have problems maintaining relationships and I would continue to be lonely. Which gets back to the subject at hand. What bothered me about that statement?
THIS:
"The implication that those with FMS are DOOMED to SUFFER the rest of their lives as HELPLESS VICTIMS."
I completely and totally disagree with that conclusion with every fiber of my being! This simple fact remains:
"If we do nothing.....nothing will be the result!"
My fellow FMS Survivors, how will the world ever understand us if we do not show them courage and strength in the face of chronic illnesses and devastating pain? No one listens to whiners and victims, but they WILL stand up and take notice of those who survive the pain with dignity and grace. Choose to be a survivor and never let the pain define who you are! We have a gracious and loving GOD. He will give you the courage you need to endure. This is one of my favorite passages:
"I know the plans I have for you," declares the LORD, "plans to prosper you and not harm you, plans to give you hope and a future." Jer. 29:11
In closing, this video is my story of how I eventually rebounded and fought my way back to a new life by God’s Grace. This was my childhood dream. I had never pursued it as I never had the time or gave myself the permission. Had I not been afflicted with this disease, I might never have pursued this dream and had such wonderful experiences with Filly.
Earlier this month [Oct. 2009] an on air radio personality, Dave Ryan, Twittered a comment that "People With Fibromyalgia Should be Shot". I would like to stress that he has since apologized; however, I have developed an unexpected resolve to bringing awareness to FMS and other invisible illnesses. I hope to help educate the healthy world how these diseases can impact a person’s life. So, in this blog I have included a copy of my email response to him, as well as two links, one is to Jen Reynolds' video response to Dave Ryan and Clear Channel Communications, as well as a link to my video, which exposes my story to the world.
Let's just hope that more people are compassionate and understanding and I don't find myself shot the next time I leave a plane! My last flight was horrific and I had to be helped down the skyway.
On a side note - Dave, thank you for the apology. I should also thank you for bringing attention to a disease that is so commonly misunderstood. Perhaps now people will think twice when they hear the word Fibromyalgia, and instead of scoffing, they will stop and be thankful for their blessings of good health.
Dear Dave,
I would like to share a little about myself with you. I've heard a lot about you and thought maybe you should learn a little about me.
I'm presently a member of an all ladies drill team. Well, to be more specific, I'm a small part of a 2 time/back to back National Championship Drill team. My son is a member of their Advanced Youth team, which also won the Youth National Championship this last June in Tyler, TX. Since I cannot ride hard on back-to-back days because of my health, in fairness to the team I have chosen to provide ground support at large competitions and I ride with the team in parades to help raise money for the trips to competitions. I'm always there in the background, providing support to all the ladies who have accomplished what no other drill team has EVER done. Three weeks ago, my son and I rode a 16 mile trail ride fundraiser called "Hooves for the Cure" to raise funds for breast cancer research. There would be two different groups, a two hour ride and a five hour ride. We took the long ride. We were told to go 16 miles in 5 hours we would have to "trot" a little. Well, that was an understatement. We had to flat out lope and gallop a large portion of the ride. We started out with 38, many dropped out in the middle, but not me, not my son. We stayed and rode the whole 16 miles, walk, trot or gallop. I was going to finish it for the memory of a former drill team member, in fact the horse I ride once belonged to her before she died from cancer the year I joined. Also, we rode for a former co-worker who survived breast cancer twice and now is 10 years down the road and still cancer free. We rode fast and hard, the greatest way to ride! I loved every moment of it and let myself feel the freedom of riding across the countryside with the wind in my hair. At the moment I felt truly alive, free, and perhaps pure joy. All the while on this trail ride, I was thinking wouldn't it be nice if something like this was done for research of FMS/CFS/Lupus? All the invisible illnesses that we still don't know how to cure? You need to know even more about me. I am a survivor as well. Not of breast cancer, but I have survived a serious car accident that took everything away from me in 2002. I had a severe neck injury and now I have a plate fused in my neck. I thought once I was done with that surgery I could get back to living, but that wasn’t the case. There was this disease that I had no knowledge of. Two years later, I developed FMS as a result of that devastating auto wreck. I lost almost everything, my career, my health, my friendships at that time. I rebuilt a new life in it's place. That's when I first met the Rangerettes and began to pursue my passion for horses. If you see me on a plane, you won't know I have FMS. But if you want to say 'hi" or exchange a smile or kind word, you can recognize me by my western boots and the Championship belt buckle I may be wearing. The buckle was given to me by my teammates out of appreciation for my hard work and support at the competition. Even they did not know I have FMS until this year. I'm not going to slam you for your comments. I just wanted to put a face on the disorder. We all say things in the heat of the moment without thinking. Were you thinking? Will you think now? Please, please help us turn this into something positive for the millions of FMS survivors who are NOT as fortunate as me. Who did not get the care they need or are lost and don't know where to turn. We need to raise awareness in a positive way. Can you help us with that? Would you care to? Please think of me often. I'll be the one riding the big black horse, knowing that tomorrow I'll pay for it, but living life in that moment. Thanks, Dave. Sincerely,
R. Dinse
To all my readers, I hope that this finds you well and looking forward to a blessed holiday season. If you take anything away from this blog, please let it be empathy and compassion for others. We can't know someone's circumstances unless we are walking in their shoes.
