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Readers Resonate to Comments of Chronically Ill
Edited and compiled by Kathy Green

Strength in Numbers

Read Article Here

“Interacting with the Chronically Ill: Reader Comments,” Compiled by Darla Isackson

Thank you so much for sharing these responses (I can identify with almost all of them!)

I just keep telling myself — people don't mean to hurt, they simply do not understand — but it does hurt, especially when it is a spouse/children/'friends'/Priesthood leaders.

Linda M. Hall
Ridgecrest, California

**

I am a 43-year-old woman recently diagnosed with follicular lymphoma. It is a blood cancer so at stage 4 it is spread to most of my lymph nodes and my bone marrow. Follicular lymphoma is not known to be curable, just treatable, so most likely I will be dealing with it until it kills me.

Because of a compromised immune system and a couple bouts of pneumonia before Christmas I had to “quit” my job as Primary secretary. I feel like I've had a lot of love and understanding from my ward. They are one of the best. Although I have help and support from all the sisters, the older sisters seem to have a better idea of the impact it has in our family and how lonely it makes me feel. I am undergoing chemo and that keeps me home most of the time. Aside from the huge impact the cancer has had on our family, the financial part is just as terrorizing.

The lessons I have learned from this are incredible. Knowing the Lord's timing on things is so good and things I learned several years ago that helped prepare me for this struggle. I just have so much more to learn... Thank you for your articles and for taking the time even when it isn't easy to reach out to others and share your struggles and joy. It makes me feel less alone.

If indeed the things allotted to each of us have been divinely customized according to our ability and capacity, then for us to seek to wrench ourselves free of our schooling circumstances could be to tear ourselves away from carefully matched opportunities.
                                                                                                                                                                               Neal A. Maxwell

Angela Hanley
La Grande, Oregon

**

I was gratified to read the article replies and felt the need to add to them.

I was diagnosed with a chronic illness 25 years ago and given 10 years to live if it was not controlled. It is still not really controlled and since then I have developed more illnesses — in fact I had a doctor say that I was so ill I shouldn't be expected to work; but that is not possible. Sometimes it seems that the better I cope the more ill I get but I know that isn't true.

The problem I have is that I look and often act healthy. This leads to people asking why I wasn't in church (sleep deprivation and pain), why can't I do the physical work they've asked me to do (arthritis and lethargy), what do you do all day (cope), etc. The thing wrong with this is that I am continuously explaining my reasons to the same people. Why can't people listen and learn?

One gets tired of people judging from the outside appearances. We need to remember that the negative comments are heard louder and remembered longer than the positive. When the bishopric asks the same questions, you start questioning the need to keep explaining. It gets bad enough that sometimes I wish I had a visible infirmity so that everyone would say poor you and quit bugging me.

But the Lord has given or allowed me the infirmities that he knows I can handle and that will bless me. I thank Him for that — and those illnesses that are just because and not from the Lord, He has given me the ability to cope with them too if I only ask his help.

David Mohr
Victoria, British Columbia, Canada.

**

I thank you so much for addressing this sensitive, painful (no pun intended) subject. 

My husband suffers from fibromyalgia AND rheumatoid arthritis.  Both illnesses are seen most often in women.  For the past several years he has not been able to work because of the severity of pain.  He recently went back to work, mainly because we had no choice.  Luckily his pain management meds and his RA medications are working well enough to accomplish this.  We also believe that Heavenly Father has His hand in this too.

I injured my back several years ago and underwent surgery.  I thought I was well recovered and then the pain became more and more severe.  I had to quit work almost a year ago due to the chronic pain.  In fact I am being evaluated for further surgery.  To say things have been difficult is an understatement.  Financially we are a mess.  I was a registered nurse, with a decent income and now that is gone.  My husband is a nursing assistant. He makes less than half what I used to.  We have learned to manage, though. 

What is more distressing however, is the view people have of us.  As a priesthood holder, he is expected to support his family, but my husband was unable to for many years.  He was given a lot of grief over this.  No one would say it to our face, but I know many thought him lazy and terrible to expect me to work and support the family while he sat home "doing nothing."  Now that I am off work, that has eased a bit, but it is still hard.  People automatically think I am lazy and a terrible housekeeper.  No one understands how bad it hurts to do the dishes AND vacuum.  It is one or the other, but not both.  Our children range in age from 8 down to 2.  It is all I can do to make sure they are clean and dressed and off to school (of course the little one stays home with me).  We show up to church looking like we just got out of bed some Sundays because I cannot do the ironing and all that.  It is so good to read of others in the church who suffer as we do, and understand (not that I would wish this suffering on anyone else, just that I am glad I am not alone).  I look forward to more articles teaching me to deal with these issues.  I enjoy Meridian Magazine so much.  Keep up the good work!

Renee Drake
Orland, California

**

This article has great advice. I recognize myself in many of the comments. Hopefully I can do more than just admire the sage advice. The first hurdle I have is to believe that what I have to say is of worth, and then that I will not expose my ignorance.

Dale Wilder
Fremont, California

**

I want to thank Darla Isackson for her article entitled "Gifts and Challenges of Chronic Illness."  I have not been able to understand why I have such chronic problems with my feet and my back that leave me depressed about it.  I try and rationalize in my prayers that I could do so much more for the Lord "if only" I didn't have these problems that leave me feeling hurt, depressed and uncomfortable.

A little over a year ago I felt inspired to have my feet operated on to relieve the plantar faciitis that had plagued me for years.  I had done everything prior to the surgery to prevent the surgeries, but to no avail.

In talking with my podiatrist I felt that this was the right thing for me to do and felt a calmness about it.  I had one foot operated on and was restricted for 6 weeks in getting around.  Then I had the other foot operated on with the same restrictions.  All of this only to discover that my feet actually hurt worse than before and the doctor couldn't figure out why.  Perhaps it was my fibromyalgia that kicked in making things worse.  It now has been over a year since the surgeries.  I have chronic lower back problems as well.  And today as I write this isn't my best day.

Yet as I read Darla Isackson's article, I strangely feel better even through my tears.  And I will reread it and share it with my husband, too.

I know I need to look at these problems as the Lord's way of reminding me to depend on Him in all things.  But feeling discouraged at times and sometimes hopeless about it only encourages Satan to use these conditions against me.  I must realize not to let Satan win.  But to know that the Lord is in charge, and with His divine help I can endure to the end.

Margaret Wilcox
Jerome, Idaho

**

I read this article and the associated comments with great interest. I suffer from RSD (or CRPS) a much-misunderstood condition that makes no sense either to those who suffer from it or to those who are closest to them. My wife cannot comprehend the condition nor can she understand how it affects me.

A simple definition for RSD, given by my doctor, is that you have the pain from a trauma, in my case a badly broken upper arm, constantly, even though the physical bone has healed as much as it is going to. For me, the best or least the pain gets is at the same level as it was when the arm was first broken. At times it feels ten times worse than that. As a result I don't sleep well. If I get more than an hour of uninterrupted sleep a night, I consider myself lucky.

Right now, to add to my woes, I have "something else."  The doctor doesn't know what, but he's given me antibiotics, steroids, muscle relaxants, pain killers and cough medicine to try to treat it.

Needless to say I was ready to call a pity party.

My wife is concerned that I am being negative most of the time and in truth there is something to her concerns. It can be very hard to be positive in my circumstances.

Sister Isackson's article was just what I needed. She is the first person in a long time who has a chronic illness who has tried (and succeeded) to be positive and to make useful suggestions. I know that what she says is right partly because my wife was saying the same things to me this morning.

There are many chronic pain support groups, several specifically for RSD/CRPS sufferers, but they all seem to be basically pity parties where everyone sends emails complaining about their woes. I have tried all of the medications / narcotics that are available for pain management and do not like any of the side effects. I have searched many times for people to talk to who had positive suggestions. My friends who don't suffer chronic pain simply don't understand.

Unlike a broken bone in a cast or a physically obvious problem like cerebral palsy, chronic pain cannot be seen by others. There is no dial that they can tap and see that your pain levels are currently at a 9 out of 10. There is frequently no visible bruising or markings to be seen and sympathized over. There is only the word of the sufferer that they hurt. It seems inconceivable to others that you can suffer from constant pain for 4 years and that you have not "got used to it." That you have not decided that you are "just going to ignore it" and "get on with your life." It doesn't seem sensible that you would willingly ignore the instruction to provide for you family just because you are in pain.

Given all this, it is easy to see why chronic pain sufferers feel misunderstood and sometimes almost paranoid. Especially when another suffers pain for a few hours or days and expects to be able to stay in bed until they feel better. I know from personal experience that you don't want to be negative, but when all you hear is negative from fellow sufferers and from those around you, it is hard to be anything else.

The only way out is to do the things that Sister Isackson talks about — the ability to make the spirit the master over the body and trusting in the Lord. It is sometimes hard to accept that the Lord will not give us any trial we cannot overcome — especially when you feel as if you are in fast sinking quicksand and someone is throwing heavy things at you. But I know that it is true. My life was literally turned upside down when I broke my arm in a car wreck when I rolled our family Suburban 5 times. You cannot imagine how uplifting, a literal answer to a prayer, being able to read a positive article from a "fellow sufferer" was to me this morning.

The only way through the pain is to accept that the Lord knew what he was doing when he gave the trial. My wife reminded me this morning that the "support groups" do not know better than the Lord. He knows what we are capable of. Our job is to find the path that can make our lives happy and useful again. The hardest part can be to accept that the path we have trodden thus far is no longer available to us and we have to almost blindly blaze a new trail for ourselves.

I can see many positives about the trials I am going through, but at times it all feels a burden heavier than I am capable of carrying. Sister Isackson's article reminded me that sometimes all the Lord can or will do is make it possible for us to bear the burden. The burden itself is not going away; it is how we deal with it that matters.

David Gray
Willard, Utah

**************************************

Happiness is a Hoole Book

Read Article Here

“To Be Happy at Home:  An Interview with Daryl Hoole”

I'm very excited about reading new material from Daryl Hoole.  I was a new homemaker in the 70's and her books and classes at BYU Education Week motivated me and helped me learn to be organized.  I'm so excited there is a new book for a new generation - my daughters.  Thanks!

Linda Ottley
Highland, Utah

**

My mother gave me Daryl Hoole's book The Art of Homemaking almost 35 years ago, when I became a new wife. I read that book over and over! I ran across it when my children were in their teens and I was working full-time and looked it over but put it away because I felt it didn't relate to my life anymore. I look forward to reading Sister Hoole's new book and if I like it I will pass on the torch and give it to my own two daughters.

Valerie Sorensen
Salt Lake City, Utah

**

I am so excited to be able to glean from this wonderful lady!!  In my “young family” season, I was so grateful for her advice!  Thank you for giving us the opportunity to learn again — especially directly from her, and the “behind the scenes” info.

Blessings on your heads!  I am planning on purchasing one for my two daughters and two daughters-in-law for either their birthdays or Mother's Day.

Thank you!!

Suzie Hansen
Erda, Utah

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One Man’s Valley of Sorrow

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“Keys to Overcoming Discouragement, Despondency, Depression,” by Darla Isackson

Depression! One of the dirty words of Mormon culture, usually placed on the same level as divorce, abuse, homosexuality, somewhere under the coat rack or in a corner of the lavatory.

Not only is it a dirty word, but when we do read personal stories or retold stories of depression, especially in Church publications, we usually read about women and depression. Seldom does any publication deal with depression in men — it’s as though a valiant priesthood holder is somehow exempt from that disease, or, at least, if he has it, he should be able to overcome it through faith and priesthood blessings: one of the comfortable myths of Latter-day Saints.

However, depression, like so many other trials and tribulations, is no respecter of gender, age, or faithfulness. As emeritus General Authority, Elder Alexander B Morrison wrote in Valley of Sorrow, even children as young as two or three years of age can suffer from depression. In my case (a sixty-four year old, believing high priest), depression started as a recognizable experience in my late thirties and early forties. I was a public school teacher, my wife and I had a large family (eight children), and she didn’t work outside the home.

Even when I worked two jobs during the school year and an additional job during the summer, there was never really enough money. The financial stress, with its attendant marital difficulties, combined, I believe, to begin my bouts with depression. In addition to everything else, our fifteen-year old son died in a meaningless motorcycle accident. But because I was busy most of the time, I didn’t really pay much attention to what I now know were symptoms of depression.

About five years ago, after being divorced for almost ten years, I started falling deeper and deeper into the black void. I had raised the family; I lived alone, and spent most of my time alone. When my next to last son left for the mission field, I learned of the church-service missionary program, and so applied for that position. Because of my background in English, the brother in the archives section of the then Church History Department was anxious for me to work with him. Happily, I began my assignment in the Church Office Building in January of that year.

Three months later the first of the serious depression bouts hit, and I went down like the proverbial rock in the lake. One day on the way to the office, I simply started crying, for no reason. Nevertheless, by the time I arrived there, I had pulled myself together, and was able to complete the assigned tasks for the day. That night, however, I cried myself to sleep — the next day I had to call in sick, knowing that I wasn’t sick, but also knowing that I couldn’t face anything or anyone. I think I stayed in bed that day until about 3:00 PM, when I got so hungry that I had to get up to eat. That was one scary day.

A few months later, while trying to figure out something on the computer, I asked one of the brothers there to explain to me how to do what I needed to do. Instead of explaining it to me, he simply did it, then continued with his own work. I felt an almost uncontrollable anger taking over. I wasn’t stupid; I wasn’t illiterate; I wanted to know how to do the process so that I wouldn’t have to ask again the next time. I went to my supervisor, told him I wasn’t feeling well, and then went home where I sat in the chair becoming angrier and angrier with the man who didn’t take the time to explain to me how to do what I wanted to do.

During the next six years of church-service missionary work, I was kind of like a “bouncy ball” — up sometimes, but also down sometimes, with no clear pattern that I could distinguish. I finally told my supervisor that I was bi-polar, and that I was becoming more and more unstable. He was very understanding, telling me that he wanted me to continue working as my health allowed.

I need to interject, at this point, that I am one of those lucky people who have acquired a rare, non-treatable, non-fatal, progressively debilitating autoimmune muscle disease. My immune system is slowly but surely destroying all the structural muscles in my body. I have had it for about twenty years and am now completely confined to a wheelchair. Getting in and out of bed, in and out of the shower, on and off the toilet are all tortuous activities for me.

If I fall, I can’t get up by myself; either I have to call someone to help me or I have to wait until someone comes along to help me. So certainly the disease has been the dominating factor of my life the past five to eight years. It also has contributed as much to my depression as anything else. I know that, barring some unforeseen death-causing incident, I will eventually be totally bed-ridden, completely dependent on other people for everything.

Four rears ago, following an unpleasant scene with two of my married children, in a fit of petulance, self-pity, and anger, I overdosed on some sleeping pills, planning on waking up in a different existence than the one I had fallen asleep in. However, that didn’t happen. I woke up in the psychiatric ward of the University Hospital. My children had discovered what I had done (I had left detailed information and instructions regarding wills, house titles, etc. on the computer), and had taken me to the hospital. A psychiatrist saw me and prescribed some medicine for me.

During the four days I was there, various counselors spoke with me, I visited various group therapies, and seemed to get along with few problems. The staff at the hospital made an appointment for me to see a counselor at LDS Family Services. I can’t say enough good about him — he was totally accepting, completely sympathetic, and compassionate. However, he was not a cure-all; I often had to call him after hours to talk with him on the phone when I knew I was not safe. He never failed me.

Unfortunately, whoever was in charge at Family Services decided he was needed more somewhere in the South than he was needed in Salt Lake, and so I lost one of the threads that was connecting me to sanity and stability. I could go on and on with stories of my continued depression, but I really don’t think they would add much to what I’m writing here.

I have to confess that I have reservations about priesthood blessings; my physical experiences have dented my spiritual nature enough that I am very wary of saying that priesthood blessings have helped. Perhaps they have, but I just don’t know it. I continue to suffer severe depression; I take my medicine, try to eat well, try not to be alone all the time, and I do say my prayers, unorthodox though they may be. Since my first experience in the psychiatric ward, I have been there twice more, with no assurance that I won’t be there again. When I tell people that I suffer depression, most of them have no idea how to respond; consequently they begin ignoring or avoiding me. I do, however, have a wonderful home teacher who is willing to listen to almost anything I say. He is a great comfort to me.

My children do what they can for me, with their busy schedules and families to take care of. In following President Hinckley’s advice to read the Book of Mormon, I have discovered a scripture in Alma that has taken on new meaning for me: Alma 7:12, especially “that his bowels may be filled with mercy, according to the flesh, that he may know according to the flesh how to succor his people according to their infirmities.”

Christ has suffered all so that he can understand our suffering. When I concentrate on this scripture, I am filled with a sense of hope and faith that eventually I will no longer have to suffer because Christ, knowing and feeling my despair, will have removed the suffering from me. As for now, I have learned that even believing priesthood holders are subject to the demons of depression

Mack Patten
Salt Lake City, Utah

*********************************************

On the Level in Lubbock

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“Why Are We Here — Really?” By Jay A. Parry

I enjoyed today’s main article Why Are We Here – Really? I would like to read more of Brother Jay Parry’s thoughts on the essential purpose of life.

It certainly helped me to look into myself at a deeper level than I have in the past.

Sister Carole Davis
Lubbock, Texas

**

Noting this article, “Why Are We Here — Really?” was authored by our stake president, I took time to read it this morning and immediately e-mailed it to our children and my husband.  I appreciated the loving expanded vision of our life purpose.  What a blessing!

Upon reading Anne Perry's letter, 12/2001, describing the beauties of Scotland, I contacted a good friend in Chicago of Scottish ancestry and said, "let's go."   She returned with an invitation to meet her in Edinburgh the following March.    Surprising myself, I obtained a passport and went.  While we did not get to Anne's neighborhood, we had a marvelous week independently touring in Scotland and England. So with regret for tardiness I say Thank You Meridian for blessing and enriching my life.

Katherine Carpenter
Salt Lake City, Utah

**********************************************

An Eye Opener

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“Clinging to the Real Treasures of Life,” by Anne Perry

Dear Anne,

Thank you for explaining the Gideon Principle. I think perhaps your writing it had the hand of God in it, for it is something that I've been praying for: the ability to see more clearly all that I have to be thankful for.

Using the Gideon Principle, I am able to see things I hadn't been seeing. My prayers are being answered!

Thank you for this message.

Marci Wahlquist
Riverton, Utah

**************************************************

Lucy Bigelow Young Makes History

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“Wilford Woodruff, Man of Many Visions,” by By James T. Summerhays

It makes me sad whenever I read an article regarding the work done for the men who appeared to Elder Woodruff in the St. George Temple.  Half of the story is left out. Doesn't anyone ever wonder about their wives?  Lucy Bigelow Young, my great-great grandmother, did most of the baptisms and the endowments for them.  I haven't seen it documented yet as to whether or not she helped with the sealings.  But, in the Church Office building, there is a library to the east of the front doors on the first floor. I went in one day to look up some stories on Lucy Bigelow Young and was referred to Elder Woodruff's diary.  He stated in his journal that under the direction of Brigham Young, my great-great grandfather, He and Lucy were dressed in white and did the first endowments for these couples.  Elder Woodruff wore white buckskin.  I have seen the baptisms documented in another church manual.

Lucy was an amazing woman and deserves the honor of that recognition. I have seen her work in the Church History Library.  She traveled to New York in the 1870's or 1880's and collected information back into the 1600's on the Bigelow line.  She also served a few missions to the Sandwich Islands after my great-great grandfather died.  She would be the last one to call attention to herself, but she loved Brigham as much as a woman could love any man, and he loved her too.  Now that she is gone, please don't forget her and all that she has done for the redemption of the dead.

I feel their influence often from behind the veil.  They are still very much together.  They both have an amazing influence on me and I can feel their love for me.

Marsha G. Hall
Pleasant Grove, Utah

**********************************************

Chair Man of the Ward

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“We are a Chair-Moving People,” by Mark Dixon

Yes it is all true. I also learnt service from my Father, as he set chairs up for different meetings in the chapels we have served in. Very enjoyable, “brings back memories” article.

Glenda Olman
Albany Branch , Australia Perth Mission

****************************************************

High Water Mark

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“Why Water is Your Ally,” by the Mysterious Dr. Bridell

Good article!

One thing to remember about drinking water is not to drink too much or too fast in cases of heat exposure, dehydration, or heavy physical exercise. This can cause brain swelling and sometimes death.

March is National Nutrition Month. The theme is "Step Up to Nutrition & Health."  The American Dietetic Association has a website: www.eatright.org, which gives good information and ideas about this theme. Go to: www.mypyramid.gov to find out individual calorie needs based on age and activity.

Amy Lee Corbin, B.S., RD
Colorado Springs, Colorado

******************************************************

Slow Food

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 “#3: What Your Body will Do for You,” by the Mysterious Dr Bridell

I TOTALLY agree with the eating slow thing.  My father takes a sip of wine before EACH BITE!!!   (We'll skip the wine issue for now — he's not a member.)  It would take him at least a half an hour to eat anything.  If he couldn't have his full time he would just not eat.

As a kid it used to drive me CRAZY.  It was the most ludicrous thing I ever heard of.  But he's never been overweight his whole life.  And this from a man who loves to eat!

Thanks for writing about "common sense."  I'm on the thin side but enjoy reading your articles anyway because of that very thing.

Johanne Perry
Cedar Hills, Utah

*********************************************

Guilt Trick

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"I, Nephi... ," by Kathryn H. Kidd

Thanks to Kathryn for sharing that great perspective on reading verses of scripture. I will never read again without thinking of that. It takes away the guilt of having just "a minute or two" to read.

Super!

Linda Sumsion
Bountiful, Utah

**********************************************

Heart Appreciation

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“Greg Olsen, Painting From the Heart,” by By Steevun Lemon

This was such an excellent article. Also thanks for showing so many pieces of his work throughout the article.

It brought me to tears. The spirit was there. I will look at these particular paintings now and think of the story behind them.

Rita Jarreau
Baton Rouge, Louisiana

***********************************************

Heart Palpations

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“From Our Hearts Instead of our Eyes,” by Vickey Pahnke-Taylor

I had a frustrating conversation with my 14-year old last night.  He is trying his hardest to live by gospel standards, and in my view is a wonderful young man.  But, he’s beginning to see his friends at school getting into trouble that, nine times out of ten, looks like a lot of fun.  He feels isolated and wonders if all his sacrifices are worth it.  I found myself struggling to find the right words to say, but mostly I just sympathized with him.  Frankly, I feel the same way he does sometimes

This morning after I checked my email from back home in the states, I went to www.Meridianmagazine.com to look for something inspiring to read.  You’re article really touched my heart.  I’ve printed it up and plan to use it as the basis of our next family home evening.  With all the garbage on the internet, it’s amazing and encouraging to me that in just a few clicks I can find wise words from another mom that speak directly to my heart.  Thank you to Vickey Pahnke-Taylor for taking the time out of what must be an appalling schedule (eight children!) to write about sacrifice and blessings. 

Lisa Goddard
Gothenburg, Sweden

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© 2006 Meridian Magazine.  All Rights Reserved.

 
About the Editor:

Kathy Green teaches writing and editing classes for the North Idaho College workforce training center, and "The Lives of the Prophets" to her twelve-year-olds in Sunday school. She has six kids, all keepers, and is currently knitting a blanket for her 11th grandchild, who is due in August. Like most of the Meridian staff, she is a published author; but she is struggling to put together her journal and family history, and stands in awe of those of our readers who are way ahead of her there.

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