Author's
Musings

Where did it all go: the frenzy, the cheer, and the thanksgiving for the time at hand with people we see or hear from but once a year? Come January 1, it disappears as a song in the dark and we’re left with the cleanup, a depressed feeling, and often, loneliness.

January has always been the month in which we ponder about our lives, where we are headed, and what the future holds for us. It’s also a time for catching up on our rest and dealing with the sniffles or coming down with the flu. The weather is usually harsh in northern states at this time whereas the Deep South simply picks up where it left off, plus or minus a yearly outbreak of a new strain of the Flu.

Children who live in the cold weather climate gleefully wait for the snowfall that will let them try out their new skates and sleds. It’s time for snowmen and snowballs; boots, wet mittens and hot cocoa—a wonderful memory for adults, and a time of excitement for children.

I can remember many winters expecting the first goodly snowfall in the North as well as the depressing Christmastime in sunny Florida as a teen-ager. The Sunshine State seemed to be out of place for the ritualistic Santa and the North Pole excursions. They were very different but the aftermath then was never a letdown. After all, I was just a big kid!

What strikes me the most now that I’m an adult, is the way we treat others during the holiday season. It’s like we turn over this huge page on the calendar of life that urges us to "put on a happy face. Do unto others as you would have them do unto you." I’ve also heard many an individual remark: "I’ll certainly be glad when it’s all over!" Or, I can’t wait to get back to normal." Crowds, the buying fever, wrapping packages, spending more time in the kitchen, and flying during the holidays, creates a lot of stress. The "have-to's" outdo the "want-tos.

And then, memories of past Christmas times surface. Some are heartwarming experiences; others are sad reminders of loved ones who will not be here this year. Also, some of us have memories, which are too painful to bring to the surface. Then there is the memory of how it *used* to be. After all, the past reminds us of our youth that was, and our aging we would like to forget; the good times we had so long ago always seem to be tucked in with some that were not so happy. The season reminds us of our vulnerabilities, our painful reminders; failed promises, and neglect of those who had faithfully depended on us over the past year.

Sometimes we take on more than we ought to; make "promises to keep" that we cannot; thereby creating guilt for ourselves all year long. This is where looking back over the past year reveals itself. Are we satisfied with what we’ve accomplished? Did we take advantage of opportunities to "seize to the occasion"? Or did we just saunter through the past year, knowing that there would always be another year and another time?

Having read this far, you may feel subtle pangs of guilt and wishfulness. But there IS a solution to these doldrums; a way to unleash the past from ourselves, and to look forward to each day with the daily progress of the new century. Taking life in bite size will clear the "air" so that we don’t feel oppressed or depressed. As my mother always said, "don’t bite off more than you can chew!

Soon it will be February: in comes a short month and Valentine’s Day, lifting spirits and waning the past. We’re now entrenched in the New Century and anything can happen!

By Dorothy H. Stiefel

While my husband, Don, was stationed in Toms River, New Jersey, in 1964, he worked part time in the camera section of Woolworth’s Department Store. He also dubbed as "Santa" and his broad lap held many children during the holiday season.

One evening, when a young boy not quite seven years old was sitting on Santa’s lap, he asked for Santa to bring him one gift: not a toy or game, but a pair of new shoes! Santa told the youngster that he would see what he could do, and asked the mother to give him her address.

That evening, when he came home, he told me that he had to fill that request … somehow. The next day he bought a pair of shiny brown laced shoes and wrapped them up. On Christmas Eve he drove to the house and placed them where he had been told to put the shoes. I nave never been prouder of my own "Santa" than that day! Some time after Christmas, the mother came into the store to inquire about a "Santa" who had talked to her child. And so the grateful mother was able to thank the man who gave her son a wonderful Christmas.

When we moved back to Corpus Christi, Christmas was six months away, but I already knew what I was going to do. I had several pre-teen children and therefore, many pairs of outgrown shoes.

One evening I asked the children if they’d like to take on a special project: cleaning and polishing up their old shoes to give to the poor children in the area. They jumped at the idea. It was 1968 when they started this yearly campaign, and quickly, the neighborhood mothers chipped in their children’s old shoes to be given to the poor. The following is a copy of the actual letter written to the Nueces County Welfare Division:

"Dear Mr. Duron: 
      
          Enclosed find a check in the amount of $26.33, which the children of the Stonegate Addition have collected by Christmas caroling."

"As you know, my children started this project in 1968, and through the years different children have participated as families continue to move in and out of the Stonegate neighborhood.

"Six of my own children started in 1968; now we have only three left at home, the eldest at 14 years. We would like to expand this project so that perhaps, starting in October of each year the children may participate in collecting shoes of young children, polishing them, replacing shoelaces, etc, so that along with the meager donation at caroling time, shoes in good condition can also be donated.

"Thank you for your cooperation, and I hope that this donation will help a few children."

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From the 1988 "RP Messenger Archives

"GOING BLIND"

by Dorothy H. Stiefel

When my children became old enough to realize that Mom didn’t see very well, I noticed that all of them harbored distinctly different feelings about "going blind." As a homemaker in the 60’s my kids were old enough to grasp what it meant but they never brought the subject up. Some people just can’t handle it, but everyone deals with the fact in a distinctly different way. The longer I live with RP, the less it bothers me. But the family? When the children became teenagers they kept the ugliness of RP alive and well and I never got quite used to it, even though I’d been coping with the threat of blindness for more than 30 years at the time.

Thank God for my dear friend and buddy who would call me on a regular basis. She’d ask: "How’s the eyeballs? Are they still holding out?" Her prompting questions would precipitate a waterfall of "stuff" (just saving it for her because there was no one else.) I always felt purged after her telephone calls. Sometimes I could tell her good news, sometimes not. The important thing was that I was able to release my pent-up emotions to someone who understood and cared. I also told her, so many times, how I wished I could unload on my husband … or my mother … then my friend would say the classic sentence: "Dorothy, they just don’t want to hear it."

When my children were grown, they were not unlike other people’s offspring. My children felt intimidated in one way of another. They responded differently. Their body language belied them. One daughter became angry; one actually thought of RP as having a birth mark; he expected my vision to be the same as when he was a youngster. Another, a girl, was simply detached from the subject itself; and a son whom I thought had internalized my educational attempts figured I might have grown out of it, or better yet, that it had finally gone away!!

But out of the seven, I reaped one jewel, a daughter who as a youngster, was supportive of my RP work. Now that she is grown and has her own family, she is still sensitive to my needs and very much interested in hearing about where I am with my vision loss. Although I had always explained to all my children what my needs were . . .  and why, she was the only one who paid attention and listened well. Perhaps my having RP does bother her but she doesn’t shrink from whatever emotional pain she might feel. She somehow gets past that so she can dutifully and sensitively administer or respond.

Perhaps being a nurse made it more natural for her. But she was not a nurse when she was ten years old.

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Grandma's Legacy

by Dorothy H. Stiefel

My Grandma was a delightful soul. She was witty and she was smart. And now that I am at the same age of how I remembered her, I wonder how she managed to keep such good secrets.

No one ever gave me a checklist or explained the trials of aging to me. I learned the hard way when I first noticed skin tags breaking out all over. I never remember seeing Grandma sporting them on her face or elsewhere.  I never looked at her as being wrinkled because I just knew that grandmothers should have wrinkles.  She also never let on about internal thermometers. She was always as cool as a soft summer breeze flowing through our house in the country.  My personal heat gauge went wacky much earlier, though, long before the tags emerged.  And Hubby knew it too, in unsolicited ways right from the start.

Grandma was up and out of bed, fully dressed and wide-eyed each morning before I ever saw her smiling countenance.  If one leg had wanted to stay under the covers, she never let on.

When I was young, I grew up like a beanstalk -- overnight!  Everyone exclaimed: "My, how Dorothy has grown."  Relatives, especially the aunties, all giggled collectively about putting a book on my head to keep me from growing any taller. Now, my growth factor is losing ground.

I dragged out the yardstick the other day and measured my height. I planted my heels, shoes and all, squarely against the wooden baseboard and stood as tall as my joints would allow the stretch. One quarter of an inch shorter. Good Heavens, this is growth in reverse! Well . . . not everything. The tags have a healthy spurt rate.

My elbows seem to be getting in the way more often. My waistline has gravitated to the hip line, and the only thing that is growing at an all-time healthy rate is my hair . . . on my face!

Next on the list of undesirable attributes to the new (I mean different) look, is "senile." It comes with too much baggage for my taste. Just one of those misnomer shockers to stop you in your tracks and tuck you into the rocker.

Ah, I have another problem . . . "act your age." I cannot find a reference anywhere: dictionary, encyclopedia, or medical book. Somewhere, along the way someone must have arbitrarily decided that at a certain age (or perhaps with a particular number of wrinkles,) a person should behave "matronly."  I’m trying hard to figure out that one, but I think it’s a trick question waiting to be asked: "How?"

I give up. I am who I am at the age that I am. That’s not quite right. I’ll rephrase: "I do what I want to do whenever I want to do it."  Hmm. Sounds to me like I’m moving around in circles. How about settling for "I’m just having a good time. I don’t care how old I am or how I act at whatever age I’m at.  As for "growing old" . . .  I don’t.  I’m getting better. Yep!  I’m just getting better at being and doing to the fullest in the NOW!

I admit that I do have these unpredictable snags or lags of recall.  I used to remember with precision.  A snap of the fingers would bring just about anything from the near of far past to the forefront, complete with color imagery and passion, and just as fresh as the real experience. But that’s not growing old . . . that’s just . . . well, taking my time.  And the lapses don’t have anything to do with wrinkles, dry mouth, an expanding middle, shrinking front,  Dowagers hump, or my rounded shoulders. Growing old has got to be growing along with the age of life at hand. Now, this should make older people more valuable, like fine wine and cherished pieces of art.

But what about the skin tags, the creaking bones and the facial hair?  I have come to the conclusion that they’re just not an issue when they’re compared to personal treasures.

When I first learned that a faulty gene causes retinitis pigmentosa, and that I was "going blind," I thought a lot about whether it was better to know about my gloomy future, or not to know what lay ahead of me. Because I did receive a diagnosis before I married, my husband-to-be and I had the opportunity to discuss pros and cons about our future together. Would my deteriorating vision have a significant bearing on the love we had for each other? As a couple raising children, would we be able to handle daily frustrations and freely talk about how they affect us? When you are in love, these issues seem unimportant. We got married within three months as planned. Years later, when I became director of TARP, I began to receive numerous letters about the issue of whether "to tell or not to tell." It became apparent that secrecy was the cornerstone of coping with RP. "If I don't talk about it, it will go away. Eventually, though, bottling up emotional turmoil widens the emotional gap between two people who supposedly love and trust each other. This distance disintegrates many relationships. It sends a message that the partner is incapable of understanding or sharing the "bad news".

One woman wrote that she knew she had RP, but was afraid she would lose her man if she told him she was going blind. (She "lost" him, anyway, after three years of marriage.) Another correspondent related that she had dated a man for over a year, desperately wanting to marry him but was afraid to for fear he would find out about her "condition" and leave her. She described how she would avoid going on dates that would take them to dim places. "I couldn't bear him knowing that I needed assistance to get around in social gatherings," she explained. She admitted that he was puzzled by her "strange behavior," but she persisted in her ploy of feigning total independence. The woman, in her 40s, related that she was terrified of the thought of being left alone for the rest of her life, but was determined to capture a husband on her terms.

After reading so many letters from both men and women about how they kept their secret at any cost, I thought that it had to be better to "come clean".

Recently, I read about a study conducted that helped clear up the dilemma of whether to obtain genetic testing (for some genetic disorders for which carriers can be detected.) The question was: Are people who are at risk of an untreatable "disease" better off knowing whether they will be affected? The answer was "Yes". The researchers explained that even if the news is bad, knowing is better than uncertainty.

According to a 1986 study in British Columbia. "those who got bad news initially felt slightly worse, but after a year, their outlooks were also considerably better. ." than before they found out through genetic screening.

This short clip within a much longer article about the therapeutic and educational value of genetic screening clearly shows me that the primary reason for such secrecy is FEAR.

Let's reflect on this for a moment. Aside from the initial shock of such a diagnosis. the problem is a very personal one and it is invisible, therefore it is easy to deny. What kind of personal attitude a person will assume is a major part of the individual's coping strategy. Before some readers become offended by this rationale, think about it. One -minute you are unaware, or have been keeping the secret that some- thing is terribly wrong; and the next moment (after diagnosis) your very existence has been threatened. The way you function does not change during the transition from not knowing to realization. But self-incriminating thoughts tumble to the fore. No one will want you, you think. How can I maintain the normalcy? You feel like crawling under a rock.

These feelings are representative of raw fear. However, no one has caused you to feel this way. This is your response to the bad news. You try to cope with tumultuous emotions by devising methods of keeping the secret. Suddenly, maintain- mg that charade becomes the necessary means to hang on to a sense of well-being. Once you are able to communicate your fears of rejection to others, you will be able to accept yourself. When you no longer have to keep up the pretense, you will be able to relax and get on with your life. At that point. you have changed self-defeating behavior to positive thinking.

If you do not feel you can confide in your partner, it may be that you are not sure of your relationship. But, if you do tell your partner, you certainly will find out how good (or bad) your relationship actually is. Re member, it Ls better to know. However, some of us will find it more difficult to risk the pain of disclosure.

There's an exception concerning "better to know." A small percentage of individuals cannot emotionally handle "bad news" for which there is no remedy and which is under- stood to become much worse as the years go by. This situation may not have anything to do with how much he or she does or does not love you. However, the person who is so predisposed should communicate his or her feelings honestly:

"I don't know if I can handle that."

"Give me some time."

"I love you, but this is a shock. I need to think about it."

Somehow, though, you will know whether or not such responses are heartfelt or mere excuses. The bottom line is openness and honesty. A full life never comes without its measure of grief and heartache. But a clear line of communication before stepping into a lifetime commitment is the only way to build trust and nurture understanding.

Another angle to this issue involves married couples. What happens when a spouse finds out about having RP after several years of marriage?

Through the hundreds of letters over eighteen years, I have read many citing that RP was the reason for discontented relationships. I have also learned that RP becomes the scapegoat for already disintegrating marriages, separation, desertion or divorce. "I can't handle it!" was the reason given most often. Documentation reveals that women leave their spouses more often than males "desert" their wives. Women (still) expect their men "to take care of me"; men (still) are expected to be caretakers and bread winners. The outcome ultimately depends upon the relationship itself. The real bad news is that RP continues to be an onerous whipping boy.

How can we change this kind of scenario? Can we ever desensitize ourselves from the gripping fear that blindness somehow seems to make us unacceptable to others? Those of us who have RP need to take a good look at ourselves. What do we want out of life? What do we expect from ourselves? What do we expect from others? If we are honest, we will discover that RP is not as bad as it is so often portrayed. Knowing is understanding. Sharing is trusting each other. Surely, having a genetic disorder such as RP is not as ominous as the fatal diseases and ills of our present day.

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I'm Angry!
by Dorothy H. Stiefel

What, really, is ANGER? I perceive anger as raw emotion begging for a channel toward appropriate action. We all can attest to seeing or hearing about anger being vented as unrestrained, physical violence. But anger in the form of verbal abuse is not only obnoxious, sometimes frightening to an unwitting victim, but I believe that a person who is always "angry" is victimizing himself as well as others. He is, in fact, his own worst enemy.

One might think that these victims are actually weak, but author/psychiatrist Marin G. Groder, M.D., quoted in Bottom Line, says "some victims are strong-willed people who get angry when they can't control others' angry victims." These individuals expect a lot from friends and loved ones, but have little tolerance for the expectations of others, therefore, they blame others for their problems. Sounds to me like an uneven game of give-and-take.

ANGER is an end product of many underlying ingredients - past, present, or a mixture thereof. Provoked externally or from within, this emotional energy can spout or explode at any given moment. What's going on?

The coals of anger lie buried in one's mental recesses until it is inflamed by the dredges of memory, of old, but not forgotten, haunts of the past. I call them "life scripts." A psychologist once asked me to define "script behavior." I told him that as a child I was told to do certain things in a very specific way. Any deviation from the "script" was a disobedience. I was taught to think and act the way my mother wanted me to behave. This pattern stayed with me throughout my early married life, the time when most young married couples have many arguments. I soon learned that my "script" and my husband's were incompatible and I needed to do a major "rewrite" in order to affect a cohesive relationship.

When I get angry, I try to think about the real reason for my anger, and attempt to put it into proper perspective. For instance, when I am displaying anger, what is the actual source for the outburst? When I act defensive, what is the reason behind my behavior? I can recognize some situations when the action seems to stem from my inability to function well in my daily activities. The frustration leads to reverting to the "script." Other times, the anger is like a slow "burn" that gradually builds up to an explosive level of stress. That's when I go out and take a long walk. Other times, especially when my energy level is down, my frustration level diminishes to passivity. I usually stop what I'm doing and relax in front of the TV set (which usually induces a short nap.).

Many readers relate of their anger. They share their fear, their frustrations, and their depression as they endeavor to cope in a healthy manner to the dysfunctional ways RP impacts their personal lives and that of their family relationships. Some call themselves RP "victims." Family members often feel anger because of their inadequacy to do something about RP, to "fix" the problem. Other family members avoid risk-taking in addressing issues as they arise. It is easier to pretend it doesn't exist. Anger becomes their blindfold.

A letter from one of our reader/members was very candid about her family relationship. She says:

"One morning after church service I realized some things. The sermon was on dysfunctional families-denial and burial of problems. ...it made me realize some things about my family, and some things I have buried and not come to terms with. I need to do some deep soul searching. My family and I are not very close and they don't give me any support at all. . .1 will definitely be talking with my counselor about it. I bet it will be very painful, but growth usually is! I know that from experience." She also spoke about the shock and anger she felt after learning she had lost more vision. She attended a church retreat and said: "An inner peace has come to me and I hope it will continue."

Another reader states that her "safety net" is doing volunteer work-helping others. Years ago, when I first learned of my diagnosis, I channeled my chaotic thoughts and emotional grief into the joy of being a devoted homemaker. After the children were grown and had left home to pursue their own lives, I filled the void by entering the world of helping others through organizational work.

Lynda Johnson, president of the CA RP Support Group in San Mateo, CA. and editor of their newsletter Reaching People, found that music relieved much of her unwanted stress: she is quoted in their newsletter:

"The art form of music has been my saving grace... .The transitions I must make as my visual abilities decrease, involve me in a continuous cycle of denial, anger, depression, and acceptance. . The various dynamics of music help smooth out the rough edges of each transitional stage."

Over the years, I have learned some tips to help keep from becoming an 'angry victim':

1. Go easy on yourself. Recognizing your problem is the first step toward resolution. Be open with other people as well as yourself.

2. Let others know you are angry; get down to the talking level. Feelings are important, and the people you are close to need to know them (in a non-intimidating way that must be reciprocal for ultimate improvement.)

3. Recognize when you are out of sync. Tell the person "I am angry!" Then work toward staying in the safe place, the even-keel "golden zone."

I find solace in the numbers. I find comfort knowing I have so much to be thankful for in spite of what makes me "crazy" at times. The inevitability of human nature's complexities will always be a part of life, but I am very aware of my shortcomings, and zealously work to channel my energies in a more positive way. And, I suspect that my spouse has to be grateful for that!