Jenny Hoff

In the year 2006 Jenny Hoff was at her stride. At 46 years old, she had recently opened Aracelias Deli in downtown Spokane with a friend and so made her life-long passions of cooking and catering her new career.  She and her spouse/partner Jeff Swartz celebrated their 15th anniversary of being a happy, loving and well-bonded couple.
All was well except for the nagging problem of losing her balance for no reason and falling, a problem that had been worsening for 3 years. Jenny knew she had to find out what the problem was after a nasty fall left her with fewer teeth.
She clearly remembers the dates of April 13, May 21and July 21 in 2006. They were the days she was told by her family doctor, then a neurologist and finally a specialist that her body was waging a losing battle with Amyotrophic Lateral Sclerosis, better known as ALS or best known as Lou Gehrig’s disease.    Lou Gehrig, known as The Iron Horse because of his historic display of human strength in baseball, lived only three years after the onset of symptoms. Jenny was already in her third year before she found out she had ALS.
“My neurologist told me to go home, get my affairs in order and prepare to die” Jenny told me recently at her customized brick rancher in the dreamy part of Millwood.  It took a while to process the news and adjust to the fresh hand of cards she had been dealt but Jenny got her feet back underneath her and decided to make the most of her life, while learning to live with the steady loss of one muscle after another as her nervous system breaks down and cuts off contact between her brain and her muscles.
It helped in December of that year when she found a friend and mentor named Tony in an ALS chat room online.  Jenny met Tony only once in his hometown of Chicago and had just 7 months to be his friend but his impact during this turn-around period for her was life-altering.  “I walked with him day by day, to the end of his life on earth,” she said.  “He was one of my greatest teachers.” Jenny learned from that bond and friendship that part of her new calling would be to be a friend to everyone, especially anyone going through adversity.
Jenny learned she had a gift to touch hearts and to teach . She became a dear friend to anyone who needed one while also interacting with hundreds at a time in the perpetual effort to raise money for such worthy causes as funding for research and providing aid for people with ALS.   To date she has single handedly raised more than $50,000 for ALS.
Being an advocate and spokesman for ALS while suffering from ALS has by definition a short window of opportunity and Jenny has been burning the candle at both ends for 5 years, speaking to all clubs from Rotary to Lions and any class room from grade school to graduate school that will give her an audience as she teaches the able-bodied what it means to be disabled. She has spoken to dozens of large groups and gone to Washington D.C. to lobby for ALS.  She traveled to Boston to observe and talk to scientists working on a cure.
Beyond giving of herself, Jenny has learned how blessed it is to receive acts of kindness from friends and from family and from strangers. The house she and Jeff live in for example was found for them and then extensively remodeled to fit her needs by a group of supporters .”I am luckier than a lot of people,” she said with sincere gratitude. “I have Jeff and a lot of friends and my whole family.”
She has felt the outpouring of kindness from strangers like when a man stopped and got out his truck one day as Jenny rode on the side of the road in her motorized wheel chair during a rainstorm. He told her that she was an inspiration and handed her a wad of money. When she thanked him and asked his name he told her it was not important and that he would meet her again in heaven. After he drove away she cried as she counted out $900.
Her ALS friends who have gone before have also been overwhelmingly generous. Her friend Tony from Chicago gave her the computer she will use to communicate with when she loses the ability to speak. Another friend gave her the van with the wheelchair lift that transports her, and still another friend gave her a mechanical lift used to raise her from a sitting position to a standing one. She in turn will pass these on when she can no longer use them.
The generosity of others is appreciated beyond words and an important part of any disabled person’s chance of survival, but it does not come close to paying the normal bills let alone the extraordinary costs of living with something like ALS.  It adds up to $200,000 annually and while Jeff and Jenny pay their own way as much as possible, they rely on public assistance as nearly all disabled do to different degrees.
“Last year they took away occupational therapy, dental, and hospice,” she said. “To me the disabled is the wrong place to cut. We can’t say ‘you know I need a few extra bucks, I think I’ll get an extra job or work over time for a while.”
It seems a cruel irony that the physical and emotional struggles of being disabled are so expensive. These are particularly difficult times as Jenny’s ALS progresses and require that they get new equipment like the shower assist device which can run as high as $4,000 that she will need soon. It does not help that Jeff was laid off last September.
“I have told him to try not to worry about it. I used to worry a lot more than I do now,” she said, explaining that she has developed an attitude that always looks for the best and then be glad for that. “I have found that there always seems to be a bright side. If Jeff had not been laid off we could have not spent this much time together. He has been a lot of help to me.”
It is an attitude of gratitude that radiates from her and creates instant report with everyone she meets.  She said she greatly misses the recent loss of the ability to write with either hand because it had been one of her favorite things to encourage her friends online all over the world. “I love to offer solutions and be helpful,” she said, adding that inspiring others is another part of her purpose in life.
It is something she has been doing for years with her laughter and love and upbeat, energetic personality. Her “Angel Made Pies” program for example has been bringing out the best in people since 2008 when she and a group of her grade school neighbors started baking a few pies a week to sell in the Millwood Farmer’s Market to raise money for charity. The group has grown and plans this season to bake  and sell 25 a week at the Market which starts at the end of May and is held at the Presbyterian Church next to where Jenny and Jeff live. Her young friends and all the others who have volunteered alongside Jenny have learned invaluable lessons on life and love. It’s been Jenny’s joy to have helped them learn.
Like her hands that can no longer help make the pies or write letters of encouragement,   Jenny’s voice will someday, sooner than later, dessert her.  She says she is currently recording hundreds of words and phrases into the computer she received from her friend Tony. She will eventually learn to communicate through it with a puff of breath or eye motions.
Until then she will talk as fast as she can and make as many new friends as she can. She will keep leading and working fundraisers. She will keep looking for every chance to give her predicament a little more purpose and have a positive impact on those around her. Even the interview for this story had the possibility of being an opportunity and so she prepared by not talking all day until we arrived.
“You make sure to thank everyone,” she said. “I have been helped so much by all of my family and so many friends.”  She said that she felt lucky to have so many people who love her, especially Jeff who has been by her side through everything.
“I was told that 60 percent of husbands in Jeff’s position leave,” Jenny said, adding that during the first months  Jeff resisted accepting the diagnosis and wanted to keep looking for a better one. “Finally I said I am ready to move on with this. You can either come with me or do what you have to do. Thankfully he heard me.”
Later we ran into Jeff alone. “This whole thing is not easy. I don’t have to be here but I love Jenny,” Jeff said. “I am not going any where. Jenny is my gal.” Jeff and Jenny have been in love for 20 years now, in sickness and in health. He has told me several times through the years that Jenny is his hero.  The truth is that Jenny and Jeff and their bond are heroic to at least Ruthian porportions if not as inspirational as America’s beloved Lou Gehrig. Surely, they are worthy of all the love and support those around them could ever muster.

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