Originally Written: June 13, 2009
Issue 1, Volume 5
Thank the Lord the weekend is here! I am so ready for it!
This week I've had in your face, up front experience with our blog topic today. It has to be one of the most debatable questions out there. Not only for those of us with Fibromyalgia, but for everyone who has any type of serious "invisible" illness.
Our government has destroyed many forests with HIPPA paperwork to help protect and ensure our rights to privacy. ADA laws protect us (or try to protect us) from discrimination from employers, insurance companies and Joe Bob next door. It is our right to keep our health and the condition of our bodies private from those whom we don’t wish to have such information! What about a trusted friend? Do we share our struggles with them? Can we be sure we will be protected from emotional injury or rejection? Sad to say, the answer is unknown. Until you take that leap of faith, you will never know how deep that friendship runs.
When I was still working, it was no big deal to tell my boss I had to turn off the lights and stretch out on the couch for 45 minutes, or leave work because I had a migraine. After my car accident, it got a little harder to ask for two afternoons a week to go for physical therapy. It was yet even harder to ask for three months time off so I could have surgery and recover from the neck injury caused by the auto accident. I actually continued working for 5 months after my accident with a ruptured disc, in severe pain. Why did I wait so long? Pride? Or was it because of fear that I might lose my job? Both?
Why did I feel such a powerful need to hide my weaknesses?
The Lord made us all vastly different in every way possible, including our upbringing. The Bible tells us; "we are wonderfully made." As an adopted child, two parents who always did their best brought me up in a loving Christian home. Now, as a parent of 3, I often wonder how they did it all; especially considering they had been confined to wheelchairs since their teen years.
Dad was a victim of a car accident at 15 and broke his back. This left him a paraplegic. Mom was a victim of polio and over the years she grew weaker and found it easier to function from her chair than on crutches and leg braces. The funny thing about it was I never thought they were any different from anybody else's mom and dad. It wasn't until I got a little older that I noticed the looks we would get when going to the grocery store or shopping for school clothes. What a sight we must have been, two adults in wheelchairs packing two little girls along with them. My parents didn't ask for help, what assistance we did need came from Grandpa. Like changing the light bulbs, painting the eaves, or cleaning out the gutters. Dad was college educated and while we were far from rich, we had our own house and a big backyard to grow up in. Their physical weakness was obvious, but they were far from weak people.
Do I keep my condition hidden out of a fear that people will look at me as weak? Maybe.
My father hated pity. I remember that he constantly had to turn away well-meaning people who wanted to carry his groceries, or help him into his car. Dad had a system for everything and these people actually got in his way, slowed him down, or by helping created an obstacle for him later. I could fill pages with the little tricks and gadgets I grew up around so my dad could live just like everybody else. I promise, I'll write a blog filled with entertaining stories on that very subject soon
You see, we all want to fit in. No body wants to be the last kid picked in the schoolyard dodge ball game. So, we all strive to achieve whatever level of "normal" that satisfies and makes us happy. Women need to feel good about their relationships with other women and to do this we need to feel respected, perhaps you could even say "equal."
When I stopped working I fought tooth and nail to be the best stay at home mother I could be. But I was failing. My health was getting worse and I didn't know why. It wasn't like it was before. There was no energy for play dates. The girlfriends I had planned to discover in our new neighborhood did not surround me. I couldn't keep up with the boys and take them swimming, play baseball anymore, or take them and play at the park. I found myself fighting to keep food in the house and the laundry off the floor. The rest of the time I spent horizontal, hoping when I woke up I would discover it was all just a horrible nightmare. But it wasn't, I had FMS and it would get a lot worse before it got better. Unfortunately "better" was nowhere near what I once considered "normal" or "equal".
My outward appearance had not changed much. On bad days I was bedridden. On good days I was stiff and walked with a slight limp. I barely left the house. That eventually improved as I entered pain management and found all the other illnesses that came with FMS. One by one they were treated, not cured, but I reached the point where I would not get much better physically.
I learned quickly how to hide my condition. I didn't tell a soul outside of my family. I lived in isolation. That way I had no commitments to miss, no people to let down when I couldn't show up last minute, no uncomfortable conversations or explanations. We all know that can't last long, and it didn't. After all, I am my father's daughter, a very social outgoing person.
I have had a passion for horses since my Grandfather put me in the saddle on his sorrel ranch horse at the age of 3. From then on I listened to every horse story my dad ever talked about. When we returned home from Montana, Dad bought me Thunder. The "big girl" size of the galloping plastic horse on springs found in the toy department of T.G. & Y. Thunder and I rode together in my room until the springs broke. Dad would smile and order new ones until one day he said, "I think you are just too big for Thunder, you just can't ride him anymore." So, I cried awhile then took him off his broken springs and lovingly placed him in the corner with my stuffed animals. There he wouldn't be lonely and I could still pet him and daydream of what it would be like to ride free. I read every book about horses I could get my hands on. To this day I have a huge Breyer horse collection on display that would envy some collectors out there.
A friend of my husband had owned horses her entire life and was willing to help me with the hands on learning to add to what I had learned from the books. With her generosity, she helped me start down the road to fulfilling my dream: to own my own horse and ride free with the wind in my face. Owning a horse is a huge responsibility. Every day I have to feed, water, groom and pick hooves. The laws of nature say what goes in comes out, then you got to pick up the nature. Buckets full of it every week. To keep them in shape, they have to be ridden often. Be it scorching sun, fierce wind, or blowing snow, or come riding season you could have a wild thing on your hands.
Since getting my beloved Filly I've learned to deal with dental problems, cuts, colic, parasites and a close call with founder. I've been thrown three times, just twice by Filly, stepped on, kicked at and bit. We've spent hours driving in a truck with broken AC to parades and rodeos. Some parades we saddled up and sat waiting for 2 hours in the saddle, long sleeves, leather chaps and wool hats, just to walk a five-minute parade route in 100-degree temps. Yes my dream had come true and I loved every minute of it!
As my skills and knowledge grew, my FMS was increasingly challenged. It was easy to hide in the beginning, I wasn't a good enough drill rider and my horse is too slow for this team. I would miss an occasional practice for a migraine, but it was no big deal because no one was counting on me. It was safe. I was content to ride the parades and if I felt up to it, I would follow along to the rodeo. If it was a really good day, I would ride grand entry then stay and watch the drill team perform! I'll never forget the first time I carried the team flag through Grand Entry. I was on cloud nine. I was “normal” again! Or so I thought.
Then the unthinkable happened. My son fell in love with horses as much as his mother. He was riding as I was learning; I should have seen it coming. Then the team decided to put together a youth team for all of our kids and let them compete at Nationals instead of watching from the side. I suddenly found myself committed and I was sure to be exposed.
My husband was my saving grace that first season. When I was ill, he would take Peyton to practice. On drill days I made sure I had plenty of time to rest, did things in stages and prayed for a good health day. It was crucial in not getting caught with a flare or a migraine away from home. I eventually got to visit with other parents and teammates and confided in them. I decided it was time I quit hiding it. I have no reason to be ashamed and nothing to fear, right? Do I?
Well, the sky did not fall, there were no doves and music, it just “was.” So, Bobbie has FMS. That's why she can ride one week, but the next week it takes her breath away just to mount her horse. She will say she is going to ride today and shows up and never get on a horse. She will move fast at one practice and next week sit in her truck and drink water for 15 minutes before getting out. Most of the time she will be just fine. Every now and again she will be too weak of body. But never mistake her for being weak of character. She will always strive to be respectful of others. She asks for nothing but the same in return.
Now, that was easy, right? It was done. It was out there and I felt a sense of relief. I didn't have to hide it anymore. But the relationships would be tested. Some people would pass. Some would say a kind word when she was down because she couldn't reach her goal that day. Some would tell her they were proud of how far she had come. Some would find her sitting alone in tears and lend a little comfort. Others would fail. Miserably. Some would talk about her behind her back and call her a liar. Some would be harsh. Some would say she shouldn't be here. She would be accused of using her illness as a crutch one minute, and then she would be told it's too much for her body to take the next. She would have wonderful achievements and breakthroughs, followed by horrible setbacks. Things would be said and done that made her question her decision to follow her dream at all. People she once held in high esteem would be changed in her eyes forever. That is the risk you take by exposing your FMS.
WHY? WHY DOES IT HAVE TO BE THIS WAY?
It is this way because it is the nature of the beast; FMS will pop up and blindside us like a speeding train. It will ruin my schedule, plans, dinners, vacations and special days. I'm going to tell you I will be there and get sick halfway there. I may not show up or I may show up late and sick. I might be there and be fine, then stop in the middle of everything and go home. I'm going to say I will do something and not get it done. I may show up and throw up in your driveway. I'm going to be okay with it even if you aren't. Finally, if you aren't okay with how FMS affects my life, we won't have a problem anymore because you won't be in it.
What I have learned on my journey thus far is that instead of trying to be someone else's normal, I need to be my normal. I need to be happy within myself and not give a care in the world about what someone else thinks of me.
I have dreams. My dreams involve horses and no one is going to tell me when to stop trying. I have high standards of character passed down and learned from my father. He was told after his accident that he might live 5 years as a paraplegic. He passed away in 2008 at the age of 65.
Regardless, if I never take the risk, that success will just go to someone else.
My Lord says He has "plans" for me. "Plans to give you hope and a future” (Jer. 29:11). So, until the Lord takes the last breathe from this body, I will never let go of my dreams.
Dream on dear friends,
Bobbie
© Robynn “Bobbie” Dinse / Bobbie’s World Blogs
Please note that this short story is copyrighted and should not be reprinted in any form without permission from the author
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