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Sherry Russell BCBT BCETS

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Facing the Truth
by Sherry Russell BCBT BCETS   

Last edited: Sunday, November 09, 2003
Posted: Sunday, November 09, 2003

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I donít look like someone who is tainted. I donít act like someone who is tainted. So why should I be perceived as one? It was my problem and mine alone. For me, it was simply one more thing to add to my ever-growing stress portfolio. Then one day my daughter, who is like a rainbow of colorful sequins capturing the sunís rays always sparkling and full of light, called me asking me to explain exactly how RA literally felt.

 Facing the truth

I donít tell people as a general rule that I have RA, rheumatoid arthritis. The reason is very simple. I donít want to be perceived as a "broken person". Someone who is tainted. I donít like that uncomfortable look on a personís face as they take two steps backwards from me when their brain draws a mental hairball as to what to say next. They act as if they could catch it by being in the same-shared air. Somehow their mind projects an image of a future me Ė a broken helpless me.

I donít look like someone who is tainted. I donít act like someone who is tainted. So why should I be perceived as one? It was my problem and mine alone. For me, it was simply one more thing to add to my ever-growing stress portfolio. Then one day my daughter, who is like a rainbow of colorful sequins capturing the sunís rays always sparkling and full of light, called me asking me to explain exactly how RA literally felt.

Soon my life and her life would radically be altered. Life seemed so simple when the phone rang. Life appeared so normal when I heard the business tone in my daughterís voice, after all, it was in the middle of the day and she was heavy into professional mode. Life was still my canvas. In a turn and a twist of the wrist, I could oil paint the wishes of the day to make any dream of hers come true . Then she said "it" in a frank tone. My life view went from a wide-angle lens to a narrow tunnel field of vision. Tracy, too, had RA. My little girl, who is a ballad to delight, is tainted and I couldnít do one thing about it.

Let me back up here for a moment and tell you about a research study done in the 1960ís by a psychologist named Walter Mischel. Mischel experimented with the self-control of four-year-old children. (Believe me, this will relate!) A researcher would bring two treats to a child. The treats consisted on one big cookie and one little tiny cookie. The child was told if he wanted, he could eat the little cookie at any time, but if he would like to have the big cookie as well as the little cookie, the child would have to make the decision to wait for the researcher to return from an errand.

A few of the children asked for the little cookie right away. Happy with instant self-gratification. However, most tried to wait it out so they could have both cookies. The children creatively found ways to stop their pull towards temptation. They sang, hid their eyes, invented games and tried to nap. Some were successful in holding out for the reward of both treats. One of the lesson learned from this, was the kids tired to put the not yet attainable cookies in a "mental account" Ė one that could not be touched theoretically. These wise four-year-olds did their best to completely forget about the cookies until the researcher returned from the errand. Even though this was an experiment with four-year-olds, I think it does relate to how many of us live our lives. I think we all deal with certain issues by putting them in an untouchable "mental account".

If we harbor certain elements of our life into a "mental account" which becomes taboo to touch, would that be a good emotional defense? Actually, it would be one heck of a marvelous strategy for saving money. With money issues, we adults are like most of those kids, we can try to hold off spending but our wants may get the best of us. This would not be an appropriate strategy for dealing with lifeís problems; yet, I think we are more successful in this area with opening this account and making regular deposits in the "mental account". Especially, when it is an emotional fearful issue we would prefer put off facing.

Itís hard to face a series of transitions. Itís difficult when your universe metamorphosis into a chaotic spinning sphere. Is your future sealed when you get saddled with a disease or handicap? Do you succumb to the grief of what was and what may be? Does "it" control you and become your world or do you accept it as another part of yourself that needs tending to? This is certainly a puzzling and troublesome subject to discuss with family and friends. Let alone transform it. But it is an issue you have to face with emotional and logical honesty. All the huffing, puffing and blame storming in the world wonít make it so. I know Ė I tried!

I have done my fair share of "shaking up the world" or completely irritating everyone who has ever cared for me, whichever is your choosing. I brought my daughter up to do her own "shaking the world". After all the world is a snowglobe. You shake it enough and all kinds of opportunities and wonders get stirred up. Some lead to astonishing remarkable avenues of reward and growth. While some are from that school of hard knocks. But choosing is what makes your life yours. No one chooses to have a disease. No one chooses to be the "one" whispered about in that collection of family and friends.

I read an interview with an author friend, Beverly Scott. I was taken back and impressed with her cheerful spiritual efficient way of coping. She offers helpful candor. To watch and feel a once healthy beautiful body turn lax and knarled brings thoughts to your mind deeper than words can express, yet she does express this with direct "like it is" statements. Beverlyís oldest daughter died in 1995 of complications of Diabetes and RA. Beverly has lived with RA for over 30 years. She has steel hips, plastic knees and finger that curl into fists. She believes all of this has served in a positive way to create her writing voice. She uses the middle knuckle of her left hand and the eraser of a pencil in her right hand to type on her computer keyboard. Here are her feelings on how to handle it.

Sherry, you asked about how RA has affected my feelings about myself, and the response of my family. I learned in the early stage of my disease not to dwell on the things I couldnít do, but on all that I can. Depression is often a significant problem in any chronic disorder, but God has blessed me with a sunny nature and it is not a part of my life. Pain is the biggest problem I face. Keeping busy with; my writing, my reading, my duties at our company, Colonial Builders Inc., and enjoying family and friends helps to keep the pain at bay. Publishing two novel has also given me a sense of accomplishment.

My husband supports me in every way possible, from helping me dress to assuming household chores, all without complaint. My grown children are always ready to offer their assistance and my grandchildren, because of their relationship with me, are more tolerant of others and their differences. On the whole, there are more positives than negatives to having RA. Because of RA, I see each day as a new adventure. I feel closer to GOD, my family, and to the beauty that surrounds me.

So many people are bonded to each other by the virtue of a handicap or disease. Yet, they walk around on egg shells hoping to be accepted as normal and still, have to deal internally with the grief of not being able to keep up with day to day chores and events like "normal" people. Disease has a mystique to it. People look for telltale signs or focus on the unlimited downside. People get all jittery around a person who is hurting. Many friends and family members want to become allies with you at the foothills of firsthand knowledge about the disease. They just donít know how to deal with their own panicky ignorance about the situation.

RA, like many diseases, can be mild, go into remission, or be severe like Beverlyís. Thankfully, research has come a long way and there are now more ways to halt the invasion and in some cases reverse harm. Iím more into natural healing and mind control and I continue that path for pain relief. Yet, when the last x-ray revealed no cartilage left in either of my hands, I made a U-turn out of denial by immediately examining my choices (choices many people didnít have in the past) for protecting bones and internal organs with proper medications over the counter as well as prescribed. My daughter, being in the medical field, is more pharmaceutically inclined. I am grateful every day that those affected by so many diseases now have this magical world of modern medicine on their side. Living in an Internet world of canyon deep information on just about any subject at a finger tips touch on a mouse is priceless. No matter, this is still hard for me, a parent, to talk with my child because it hurls me out of my denial comfort zone. Talking about it gnaws open that grief wound but at the same time facing it is what heals.

Mom, after reading parts of your column, it brought so many different thoughts to my mind about how I've dealt with RA. July will be a year since I was diagnosed, but it was long before that I felt old before my time. Working out became a chore instead of fun because my feet hurt so badly from running and biking. My hands began giving me trouble when it came to gripping items or opening jars. My energy level was atrocious and I became very irritable with feeling this way. How was it possible my friends could go out every night and work all day and still have energy to clean their apartments, work out or even watch TV? When I finally convinced myself to go to the doctor and eventually a rheumatologist, I was happy to know what the real problem was. It was something that could be fixed. It was something that I could take a pill for. It was something that wouldn't really affect me. WRONG!!! After three trial runs with mind boggling medications, a new job that required very early mornings and long hours, AND waking up during the night unable to lift my fingers, I realized I had a problem. I was in denial. This wasn't getting any better and I was sick of it!! I realized, with the help of some surgeon friends of mine, that I needed to prioritize my life, my energy, and my level of meds. I needed to tell my rheumatologist what I wanted my body to be able to do and I needed to proactively decide with my doctor what type of meds would fit my priorities. Yes, I had to take control of the situation! I needed to decide what role this defect was going to play in my life.

Luckily, after working with my doctor, I have found a wonderful medication that has enabled me to lead an active and busy life. This medication will help keep my joints from deteriorating and I believe that it has changed my life. I look back at how hopeless I once felt and I feel like I'm cheating. I'm cheating the RA system. I actually like to tell people that I have RA. I watch their eyes move to my hands looking for signs of knobbiness. Instead of worrying that they might find something ugly, I just hope my nails look okay. Now, don't get me wrong, I still have those really bad days where the energy is nil and the stiffness shows its ugly head. But those days are fewer and further away now. I actually respect those days and look at them as a sign to slow down and get some much needed rest. Much needed rest from my very busy, very active life.

Frankly, there are times I feel like Iím a hammock being stretched between two huge trees a bit too far away from each other. I am a positive minded person who believes in the best in people and the world but sure enough, some reasonable doubt enters my thinking from time to time. Iíve decided from now on, Iím going to wear my RA like an elegant chrome hood ornament. My grief and fear is crystallizing into energetic power for transformation. Instead of being fearful of never strongly holding my tennis racket again, I will continue to exercise that hand and better yet learn to do more with the left hand. There is nothing to be ashamed of and there is no reason to have fear of others reactions. It just a part of me and itís a part I share with thousands of others. It isnít the boss of me. It isnít who I am. It is a real situation that needs proper thought and action. Denial with only allow it to sneak up and attack without defense.

Like the over night flowering of a tree, sometimes things suddenly happen that threaten and change the way of our life path. Be assured that with the right attitude, support and knowledge, you can tackle almost any terrain. Emotional isolation or the "mental bank" is not the answer. The complexity of life can not be shelved for a later date. It is now and now is all you really have so come out of that corner and fight for every joy and experience. Be ferocious in wiping your fearful grief from your mental map. Leave no stone unturned when combing though information and become your own survivalist architect. Itís your life.

Web Site: The Bright Side-Wings of Support

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Reviewed by Stephanie Sawyer
Sherry: You state this so well with such vivid and true imagery that I found myself nodding, "Yes", the entire way through.
I may as well have been you in your cascading explanation. I have a different disorder which you only know too well, but the imagery cannot be significantly different. The threats of never knowing "when", "if", and "where" can be boggling. But the true goal and challenge is to not be ruled by the lack of dependence. The distinction of 'being different' must not be the identity to which we transfer our fears, but instead, use as our source of strength. Thank you for this poignant and resourceful sharing of yourself. Stephanie
Reviewed by Karen Lynn Vidra, The Texas Tornado
as a sufferer of arthritis myself, i found this article very uplifting and inspiring, and i am so glad that you aren't letting ra rule your life! brava for your courageous spirit; i and others can learn much from you! (((HUGS))) and much love, your friend in texas, karen lynn. :D (i have osteoarthritis, may be getting rheumatoid, too. i have a lot of pain.)
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