Passings

My wife, soul-mate and best friend died August 1, 2007 after a 31 year battle with Chronic Fatigue Syndrome / Myalgic Enecphalomyelitis (CFS/ME), which was vastly complicated by severe EI in her final 7 years.

Linda graduated from both high school and college as valedictorian with a perfect 4.0 grade point

average. She finished college in three years. Images of “brain-bound” and ultimately ineffective people often come first to mind when we think of the very brightest, but Linda was amazingly down to earth, practical, centered, empathetic and creative.

She immediately distinguished herself as a computer systems analyst, a job that she absolutely loved.

She was 23 years old, and married less than a year, when she was struck down by a virulent, flu-like illness that dragged on for six months. When it finally ended, she returned to work, only to relapse a few weeks later – a pattern that was to repeat over and over. After some years she developed severe cognitive problems. Her employer made a rare accommodation for that day, running a dedicated phone line and installing a computer terminal so that she could work part time from home. But her IQ was eventually documented to drop from 180 to 102 over a two-year period, and she could no longer do accurate work.

Forced onto disability, she could have been crushed by the loss of a profession she loved, and by the loss of her intellectual capacity. But Linda simply did what she would ultimately do several times during her life: she re-invented herself.

Linda was one of those few bright meteors that flash by and sprinkle stardust and miracles on the rest of us. She was one of a kind.

Linda had been raised on a farm and had always had a special relationship with animals. She now distinguished herself as a breeder and trainer of champion Shetland Sheepdogs (Shelties). To this day, her champion Chris graces the cover of one of the popular books on the breed.

Figuring that Shetland Sheepdogs should be herding Shetland Sheep, she became one of the very first to import that rare primitive breed to the United States, and because of delays and expense in dealing with the breed registry in Great Britain, established one herself for the United States, which today is the North American Shetland Sheep Association. She edited that organization’s newsletter using the then-new desktop publishing software.

Declining health and the end of her first marriage forced her to give up her beloved Michigan farm and she moved to Kalamazoo, Michigan. That is when our whirlwind courtship began.

We married just six months after we met and packed an incredible amount of living into the next six years, including a good deal of travel and a big move, West to Arizona.

Those familiar with CFS/ME know of the “push/crash” phenomenon where you push to function normally for a few days and then pay for it with several weeks in bed. This is how Linda was able to experience travel and other activities. She loved life more than anyone I’ll ever know, and the price for living was very costly, but worth it to her.

If there was one thing that Linda taught me, it is to “seize the day”.

At the time neither of us exactly understood the underlying sense of urgency that drove us in those years, because we both thought her health had finally stabilized. But with the onset of environmental illness, it gradually dawned on us that Linda’s world was about to get a lot smaller yet again and we were grateful that we had wasted no time. If there was one thing that Linda taught me, it is to “seize the day”.

Like a lot of EI couples, we pretty much rebuilt our home, removing all the carpeting, installing special air filters, ditching upholstered and leather furniture, and so on. Many of Linda’s treasured possessions, such as the many awards and citations won by her dogs, had to be destroyed because they had become moldy from basement storage back in Michigan.

Eventually Linda’s neurological problems, worsened by the EI, rendered it impossible for her to read more than a few sentences at a time, or to receive many other kinds of enjoyment we all take for granted – no television, for example. Every chemical exposure magnified the symptoms. She became a “universal reactor”, and during the final two years she left the house only to see doctors, who increasingly, had little help or comfort to offer.

With her life down to a pin-prick of its former self, I never heard her complain. There were certainly tears of loss, but she never shook her fist at the heavens. Linda now took pleasure in whatever she could. She would watch the birds visiting the lush backyard whose landscape she had designed. She gave each of them names, and hobbled outside to feed them several times a day. When she could no longer do that, she saw to it that I did.

What we do for ourselves dies with us. What we do for others and the world remains and is immortal.

Albert Pine

I’m still feeding them, in grateful memory of this extraordinary woman who I still can’t believe I had the good fortune of sharing life and love with these past thirteen years.

At a memorial service in Linda’s honor in Michigan, only a few surviving immediate family members were present, but there were about 80 people in attendance. It was a tribute to the lives she touched that former bosses, co-workers, colleagues from the Sheltie and NASSA organizations, former professors and teachers as far back as grade school, and childhood friends all paid their respects, many traveling long distances for someone they had not seen in as much as thirty years.

Back in high school, Linda was part of a study group of kids who had a friendly rivalry over who would get the best test grades. One of those “other kids” probably said it best when he wrote me the following reminisce a few days after Linda’s passing: "I had not seen Linda in many years but through her letters I could tell her bright, optimistic spirit was not dulled by illness. Linda was a remarkable person and she will always be an inspiration to those who knew her.

Linda was one of those few bright meteors that flash by and sprinkle stardust and miracles on the rest of us. She was one of a kind."

Bob Grommes is an independent consultant and software developer living in Phoenix, Arizona. You can contact him at bob@bobgrommes.com.

One Saturday last June, my dear friend Susan Moody called me and said "Debbie, I think I am dying." Her health problems, which were serious and many, in addition to her chemical injury, which complicated and in some cases, prevented treatment for those other health problems, seemed insurmountable. We talked for hours that night, and ended up laughing and joking before we hung up. She thanked me for making her laugh that night, and I told her that I was sorry that that was all I could do for her, listen and make her laugh. She had done so much for me, at a time when I was feeling very low. She said that was all she expected, not solutions, just someone to listen & take her mind off the myriad problems for a while, someone to relax with. That's what friends do, and Susan excelled at that, gave us all a wonderful example of how true friends take care of each other. We talked about her problems and fears, and as typical of her, she steered the conversation to my problems as well. That is the way she was; no matter how sick, no matter much pain or trouble she was in, she was always interested in helping the other person. I am very grateful for that conversation, because 2 weeks and 2 days later, I received another phone call informing me of her death.

I first met Susan a couple of years ago, on the CIS list. We started emailing each other, and eventually started talking on the phone. From her emails, I had thought Susan was young and in fairly good shape, except for her CI, because her messages were always so sprightly and full of energy. I was surprised to find that she was actually in her early 60's and quite seriously ill. In spite of her severe illnesses, she was so bright, quick to laugh, sweet, with a sincere desire to help others always. She cared very much about all her CI friends, and she had many. I felt an instant connection with her from the first email, and am by no means alone. Most people who knew her say they experienced the same connection with Susan. She was a very dear and true friend to many of us, someone who genuinely cared about her friends. No matter how ugly things got for me, I always knew there was someone in Rochester, New York who cared about me.

To every thing there is a season, and a time to every purpose under the heaven:
A time to be born, and a time to die; a time to plant, and a time to pluck up that which is planted;
A time to kill, and a time to heal; a time to break down, and a time to build up;
A time to weep, and a time to laugh; a time to mourn, and a time to dance;
A time to cast away stones, and a time to gather stones together; a time to embrace, and a time to refrain from embracing;
A time to get, and a time to lose; a time to keep, and a time to cast away;
A time to rend, and a time to sew; a time to keep silence, and a time to speak;
A time to love, and a time to hate; a time of war, and a time of peace.

Ecclesiastes 3:1-8

Susan had been ill for many years of her life. She suffered from polycystic kidney disease, and the dialysis that kept her alive until her kidney transplant is what caused her chemical injury. After the transplant she had to take immuno-suppressive drugs for the rest of her life, which contributed to her breast cancer. She endured surgery to remove the tumor in her breast with only a local anesthetic, due to her inability to tolerate general anesthesia. (She suffered from prolapses, and a number of other illnesses. Her husband of many years, who cooked, shopped and cared for her when she became terribly ill after the transplant, left her a few years ago. So, really too sick to take care of herself, she had to learn to cook again, shop, clean and take care of finances, but did manage to hire someone relatively fragrance free to help with it all. She managed to do all that, and still spent many hours counseling the EIs that she met on her email support groups.) Anyone who seemed to need her help she contacted and did all she could to support, counsel, and befriend them. No wonder everyone who knew her loved her. She was an amazingly selfless loving person, who treated others with respect, kindness, understanding and honesty. In spite of all she suffered, she was cheerful and had a wonderful sense of humor, and was very appreciative of any little thing her friends did for her. Everyone I have talked with who knew her loved and respected her, myself included. Her passing left a large hole in many of our lives; she is sorely missed.

Deborah Howery is a gifted bonsai gardener who writes about coping with chemical injury and disease.

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