Person:Jeanne Hughes (1)

Jeanne was born on Saturday, the day before Palm Sunday, at the Dansville Hospital in Dansville, New York.

Health Events: 45% left lung removed--1988 Immune deficiency discovered--1989 On full oxygen--Feb. 1990 Open lung biopsy--1989

In November 1993, on Thanksgiving Day, Jeanne went into the hospital for a year's stay at which time, she died at 5:45 on Sunday, November 20, 1994. In one of her rare indications of the struggle of hospitalization she commented that she couldn't stand the idea of having to spend another Christmas in the hospital. While in the hospital she was fully dependent on a respirator and received air through a tracheotomy. The last time she left her bed was on August 13, 1994 when she attended her brother, Binky, and Amy's wedding in the hospital chapel. She was wheeled from the fifth floor to the first and she was maintaining her own air bag as she had to be removed from the respirator for the trip. There are some of us who believe that she kept herself alive so that she could see her beloved Binky married. Getting to the chapel was an enormous task for her. Having her hair washed in bed, trying to stay calm while getting dressed, putting on makeup carefully so that she could hide the ravages of her sickness. She fretted while getting ready because she was afraid she wouldn't get to the chapel on time--it took her five hours to get ready. She was a courageous and beautiful young woman who rarely burdened those she loved with the pain of chronic illness. She was in constant pain but still managed to be hopeful and upbeat. Her funeral was on Saturday, November 26, 1994. She is buried in the Loon Lake cemetery (her wishes). She was loved by many but most especially by her family who will never forget her.

Eulogy ...

Good memories shimmer like sunlight on the water . . . Myrtle Beach . . . Christmas Eve with the Votypkas and St. Georges . . . Fudderamas with the Horans . . . sun-filled days at Loon Lake . . . birthday parties with Tim, Colleen, Wayne, Ginny, Joe and Michele . . . winning cheerleading titles . . . singing, shouting . . . 4th of Julys . . . talking about crystals with Janet and gin seng tea with Ock Hee . . . going to concerts and the ballet with Ock Hee and Rob . . . acting . . . remembering high school days with Suzie B. and Grace . . . becoming Monica's godmother . . . coloring with her nieces . . . attending her dear Binky and Amy's wedding . . . breathing . . .

She was a shy, but happy, little girl. As a small child, she would fall asleep at night singing songs about the day's event--"today I went to the field and Daisy jumped up and down in the wild flowers and I played soldiers with Bobby and Binky and I had a good time playing today." When she ate something she liked, she would hum as she chewed. She was always surrounded by little boys--and--because she was the only girl, was often at their mercy. At Loon Lake in the summer she had to hold her own with her brothers, the Robinson boys, the McHales and Danny Cregan. She loved the water and skied with strength and grace. As she grew up she was first in her class eventually graduating as the salutatorian. She showed all kinds of talent in mathematics and sciences. She was bright and articulate, but often avoided drawing attention to herself. Because she was a perfectionist, she was usually late in completing assignments--a task was never finished because it was never perfect. She was in the National Honor Society, a cheerleader, and, in the summer between her junior and senior year, an exchange student to Finland.

Growing up she put on plays in the garage with her brothers and neighborhood kids including the Hitts, the Bennings, the Kimmels and Marty Martina. She was also the moving target in her two brothers' shooting gallery--having to dodge flying catalogs as she ran up and down on the sofa. While there was the natural competitiveness among the three Hughes kids, she loved her two brothers beyond measure. They were her two heroes--she hoped to find someone in her life who would have their qualities. They played together, shared their dreams together and, as they matured, became best friends. As her illness progressed, they became her soothers--Jim with his crazy antics to make her laugh through her pain, and Bob on the telephone listening to her cries of fear. She looked forward to the things that Penny, her sister of the heart, would send to demonstrate to Jeanne how much she was loved. The advent calendar created by Penny and the two little girls gave her daily purpose in her hospital stay just before Christmas. The two brightest spots in her life were her two little nieces, Monica and Emily. And then, a new sister of the heart joined her family . . . Amy who sacrificed a large church wedding so that she could share her special day with Jeanne.

She was proud of her relationship with the Kimmich family. She called them her "cousins" and was honored when the Kimmich kids had their children call her "Aunt Jeanne." Their continued support throughout her illness--via cards, letters, the kid's art work and telephone calls--contributed to her unbelievable strength in battling her terrible disease. Their love was part of a platform upon which she stood as she valiantly struggled.

Jeanne's brightness was apparent when she won a full ceramic engineering scholarship at Alfred University. Her first year there was one of glorious success: she was the yenta in Fiddler on the Roof, she was chosen to sing in a choir, she had new friends and was on the Dean's list. However, She was never happier than her second year of college. She had a boyfriend, lived in a suite with her good friends, and pledged a sorority. It was also the beginning of her end. It was the beginning of countless hospitalizations. For 10 years she struggled with the mental and physical anguish of not being able to do what other women her age were capable of. Throughout all of this, however, she maintained a strong hope that all would change--she would become a whole person again.

We, of course, here today know that was not to be. We must salute her for her unfailing hope, her strength, and her belief that she was the master of her body. She became a follower of Dr. Bernie Siegal who espoused the idea that one should be involved in one's health care. Of the pieces on display today, one was her response to Siegal's direction to visualize your illness. The green dragon is her lung disease, the shaft coming out of her eye represents a sword that she has yet to pull completely out so that she may slay the dragon. The blue represents the love surrounding her, the purple is her spirituality. When she met Dr. Siegal, he analyzed her work and said, "Perhaps, Jeanne, the difficulty you are experiencing in trying to get the shining sword out of your eye so that you might slay the dragon is due to the fact that you are not a killer." His directives said that one should be a part of one's healing process. She took his words to heart. She decided she was not going to lie submissively in a hospital and let them do with her what they wished. As her doctor was often heard to say that he respected her for her strength--but that sometimes it was pure stubbornness! He did, however, honor her right to dignity and for this we are grateful to her medical hero, Dr. Bernie Sussman.

Jeanne, at times, was too strong--she kept her pain and longings buried deep so that she wouldn't hurt her loved ones. The following was found in her apartment--it was written by Jeanne shortly before she went to the hospital for her prolonged stay. It is called "Jeanne's Grocery Needs." The items listed are as follows:

Sanity
A beau (as in boyfriend)
A day at the beach, to see and feel and hear the ocean and sand and seagulls and tropical breezes
My cruise
A dog of my own like Daisy
A garden to get lost in tending
My own home with or without a 2-car garage
A date (or a couple of figs)
To swim across Loon Lake and then ski back--at the crack of morn when it's crystal calm and you can hear people's breakfasts frying & screen doors gently bamming down the lake.
To run screaming around the yard with Monica and Emily, for no reason except that it's fun, until we're so out of breath we all fall down with the giggles
To yell until my feet hurt.

A poem written by Jeanne expressed her despair at what was happening because of her illness--a despair with which she would not burden her loved ones. It reads as follows:

Alone against the moonlight
As tears streak slow in silver silhouette,
I'm a battered bird in broken flight;
Alone against the moonlight,
Like a crippled ballerina in faded white,
Or a disjointed marionette--
Alone against the moonlight,
As tears streak slow in silver silhouette.

Just before her 33rd birthday she had a real bout of depression and cried over not being able to go to her high school 15th reunion, not ever seeing the lake again, not ever seeing the chipmunks again, never seeing her beautiful birds again, and not being able to instruct her two dear nieces how to feed the chipmunks so that they, too, could have the thrill of having a chipmunk eat out of their hands. She asked her parents, "Is this how it is all going to end? Is this all there is for me?" So, beneath the apparent thrill and pleasure of receiving photos and gifts from celebrities, she hid her advancing despair, her advancing realization that she would never leave the hospital. And the final days, she still fought the idea of giving in to the dragon in her chest . . . she refused to give in, to give up.

Jeanne's gift to all of us is how she chose to live her waning life. Despite all the negatives in her life, she has left us a positive legacy. Never give up. Keep fighting. Be strong. She lived it to the fullest--every day of her debilitation. It was rare when she laid her burden of pain on others. She was never heard to say, "Why me?" Rather, "Why is this happening?" When she was on the respirator in Intensive Care, she wrote a message of condolences to Dr. Andolina who had just lost his mother. Hardly able to stay awake, full of fear about this new event in her life, she could still reach beyond herself to show concern for another. As she slept more and more, she still tried to reach out to others--she asked that a get well card be sent to Don Beebe to let him know she was worried about the concussive blow he received in the Jets game; she asked that he be told that she was cheering him on with all her heart. She did not exhibit self pity--she was an intellectual and wanted an answer. Most people didn't know how very ill Jeanne was because she would always summon from some deep well of strength a facade of cheerfulness and good health. When people called Jeanne on the phone, they visualized a person full of energy and health based on the lift and tone of her voice.

Jeanne also maintained her sense of humor despite the overwhelming grief over life's injustices. Immediately after her first lung surgery, she was lying in the Intensive Care Unit hooked to all manner of life support paraphernalia. Her parents, pained and distressed to see their child lying helplessly there, stood at her side. Jeanne later described the situation as coming awake and seeing these two pitiful people standing over her. She opened her eyes and said, in a weak post-surgery voice, "Mom, Mom, come here." Her Mom bent over her. Jeanne, still pretty heavily sedated, said, "Come closer, Mom." Mom did as she was bid and bent over. Jeanne flicked her first finger under Mom's nose and said, "Gotcha!"

As Jeanne's surroundings became more compressed and her life more constricted due to her attachment to her oxygen tank, she started to become more obsessed with her surroundings and her things. She frustrated her family with her compulsive rat packing. She saved everything. Finally the family realized that what she was saving was a testament to the fact that she existed. All of the cards she received while hospitalized were documentation that people cared about her; the filing of bills paid so that they might be used for income tax purposes (despite the fact that she was exempt) was an indication that she was a functioning citizen. Even though she could no longer drive, she renewed her license (having to go to the vehicle bureau in a wheelchair). She registered for absentee balloting and voted--including this past November. She contributed to organizations that saved the planet and those that were concerned with animal protection. She wanted to make a difference. And a difference she made--but not the kind she thought she would. She wanted to save our environment--but her contribution was in how well she inhabited her own small space on the planet.

Christmas 1990 was the last time Jeanne was in a store--and that was as a wheelchair occupant. After that she did all her shopping via the hundreds of catalogs she received. Ginny would say more than once, "If you want to buy something from a catalog, ask Jeanne first!" The mailman gave her the dubious honor of receiving the award for the most mail volume on his route. Letters and contact with the outside world became increasingly more important--her beloved Pop Pop faithfully wrote her at least once a week as did her new-found friend, Carol Smith. Canadian friend Bill Watson would send her silly tapes and a self-made calendar in the hopes that he might give her small cheer.

Jeanne made her family aware of the beauty of the birds. They became involved in feeding and caring for her winged friends. They learned about birds' songs, their differences, and their individual habits. She also plagued her family until they became ecologically responsible. She educated them regarding recycling, saving water, and to becoming concerned with air pollution.

What could Jeanne have become? She certainly had many talents. Given the opportunity she could have been an outstanding ceramics engineer, a precise market analyst, a creative interior decorator, a gifted elementary teacher, a full-voiced singer in any choral group, an inspired artist, a caring-sharing wife and a devoted-loving mother. It was not to be.

What did she become? A strong, valiant, warrior who fought a fierce and long battle. She was a courageous, unflinching, lacking-in-pity woman who taught us all many lessons. Most of all, she was a loyal, caring friend; a proud and loving sister; a devoted aunt; and a strength-giving daughter. She was a teacher in the truest sense of the word.

We hope that Jeanne has gone to another spiritual level--that she is now in a place where she can soar with the birds, feed chipmunks from her hand, and be free at last of any encumbrances. What can you who are here today do to honor her memory? If you smoke, let her strength guide you--give it up. If you care enough about your planet, do something to save it for those who follow you. Continue to love one another. Live long and prosper.

Buried in Loon Lake cemetery, Wayland, New York.

1. ↑ ^{1.0 1.1 1.2 1.3 1.4 1.5 1.6 1.7 1.8 1.9} Family Records.
2. ↑ Family Records.

   Union Street--one-bedroom apartment
   Alexander Street--apartment n old East High Building
   Thayer Street--downstairs apartment, parents upstairs