Taking a Walk; Saving a Life

This past Saturday Derrol and I headed out into the sunshine to join with hundreds of other people from Central Florida who are determined to find a cure for ALS.

The ALS Association fundraiser Walk to Defeat ALS couldn't have been more fun, although bittersweet. Derrol and I hadn't made a fundraising effort. We saw others who had. One group presented a huge check for $20,000.

T-shirts with photos of ALS victims past and present glowed in the sunshine. One photo we saw quite often was of Kevin Bailey. "Kevin's Warriors" was the inscription under a photo of Kevin in his power chair. Kevin lost his battle after five years this past January. His son and family and friends were all walking and had raised money to support research even though research will no longer help Kevin. Adele's Allies; Walter's Warriors, The Sensational Sorgis, and the simple yet poignant sign on several shirts: "We're Walking for Mike." Adults of all ages, some in wheelchairs, some using walkers, some pushing strollers or leading dogs who also wore t-shirts, all came together at Blue Jacket Park near Winter Park, Florida -- a lovely place to take a walk and defeat a disease.

Derrol and I felt like we were the lucky ones there. Derrol is alive. He still has hope that the research will come in time to save him. He's also fortunate that his form of ALS is slow progressing. Where most people die within six years of diagnosis, his has taken twice that long to weaken him to the point that he just now is beginning to use assistive devices like a bi-pap machine at night to aid breathing and a cane or wheelchair during the day.

There was talk of findings, an Italian study shows particular promise of stopping the disease's progression. Another mentioned stem cells. And then I looked at the face of Kevin Bailey's son and knew how hard he was struggling to be happy over these findings. But instantly it became clear that no matter what happened this day, Kevin was still dead after battling that despicable disease for five years.

In the Goldsmith family we have reason to take heart. Even if the research doesn't help Derrol, it will help other family members. Because ours is a rare form of ALS called Familial Amyotrophic Lateral Sclerosis -- the inherited form. So we didn't just walk for Derrol on Saturday. We took our first steps toward fighting for our sons, grandson, cousins, brothers, and sisters, nieces and nephews.... The family has already lost more than a dozen loved ones to this disease, we don't want to lose any more. The Goldsmith clan also serve as great guinea pigs since we can be studied for clues to why some members develop the disease and others do not. We have all come together to participate in a study conducted by the ALS Clinic at Mayo Clinic in Jacksonville. Together maybe we can give researchers the clues they need to find a treatment, a cure or hey, maybe even a cause.

As I write this Ken Patterson, a former NASA engineer, now full-time ALS victim, is tooling along the highways in his little power chair headed from Orlando to Washington D.C. Once he completes the 21 day journey and arrives in our country's capital, he and a group of dedicated people will speak before Congress, meet with their congressmen, and advocate for funding and legislature to help defeat ALS. Because you see, there is an even greater threat from this disease. It is targeting our military. I'm seeing statistics that site our soldiers returning from Iraq are contracting the disease at a 75 percent higher rate than the general population. We must find a cure.

Hamburger, pickle on top, makes your heart go flippity flop

Restaurant Widow posted the winner of your best hamburger contest last December. A friend passed the link along to me today, and I just have to add my two cents to what she has to say about the Greatest American Hamburger: The Kewpee!

Growing up in the Lima, Ohio area, I quickly learned Kewpee was the ultimate treat. The restaurant, a diner-style establishment, on Elizabeth Street provided an unusual counterpoint to the few family and upscale restaurants that dotted the landscape of Lima, Ohio in the 1950s. People would line up to place their orders and stand in line watching the expert flip hamburgers, his helpers dressed hamburgers and chatted as fast as their hands moved. It was an assembly line like no other carried off in a small galley type area. One side took care of the inhouse diners, the other side answered the phone and took carry out orders. Noon at the Kewpee on any day of the week saw the restaurant filled with executives to the janitors of every surrounding business. No one could be morose or sad in there. And if they were, Nancy or the cook or someone would say, "Hey, why the long face?"

If you wanted to go out to celebrate a special event, you went to the Milano Club. Anthony Brothers restaurant on the square provided great Italian and family food. It seems the only alternative to Kewpees were Italian foods. But it was Kewpee where you went to get the best hamburger around. The restaurant's ditty was accurate: "Hamburger, pickle on top, makes your heart go flippity flop."

Of course those who count cholesterol and pop Lipitor might read something else into that saying, but for me, Kewpee figures into a whole host of good memories. Beginning with 4-H. Every blue ribbon winner received a little yellow card offering them a free hamburger from the Kewpee. Many of the prize winning steer were purchased by Kewpee at the Allen County Fair. And sometimes they purchased other market animals.

Often we stopped at the Kewpee after 4-H meetings or on school outings or after shopping in downtown Lima. Nothing like Christmas shopping, running from J.C. Penneys, riding the escalator, tromping into Nesbitts and watching the tube system suck your money up to the office on the second floor and then return with the receipt. Maybe a stop at Dome's Nut Shop, but always, always, a stop at Kewpee for lunch.

When commerce moved to the malls, Kewpee built two new restaurants that were easily accessed on the way to or from the major malls in the area. Dates always seemed to include a stop at the Kewpee. Even the naked Kewpie doll on the front of the store caught my imagination as a child curious about bodies and baby making.

And when I started working my first job after high school, I ate almost every lunch at the Kewpee. It was not only my favorite, but the diner sat next door to my employer: The Metropolitan Bank of Lima. I got to know Nancy and the crew quite well in those days. And they were a bunch of happy employees.

I hope the recession doesn't ever stop people from visiting Kewpee. My best wishes to Mr. Shutt, the Kewpee owner. And if he ever wants to share the secret recipe for his hamburgers. I'm ready to write it down.

I eat my Kewpees with mustard, pickle and onion. Of course you can't stop there. Accompanying the Kewpee are fries, sugar cream pie and a chocolate frostie. Often I'd cut out the fries -- gotta watch my girlish figure.

My mouth is watering as I write this. My husband and I stop in at Wendy's every once in awhile and try to substitute one of their sandwiches for a Kewpee, but it just doesn't work. And like many of the people who commented on Restaurant Widow's blog, whenever we head back to Lima, we have to stop at Kewpee's.

For me. Kewpee and the Allen County Fair will be forever connected.

If you like to try out local restaurants -- the Kewpee is a safe bet for a delicious meal. If you want nutrition, order your Kewpee with the lettuce and tomato. Even those taste fresher.

According to history, Kewpee started in Racine, Wisconsin and continues to thrive there as well. If interested in Kewpee ephemera, check out the Racine Kewpee website.

Faithfully Departing Posted at Notred Dame Magazine

Just a note to say that an essay very close to my heart has been posted at Notre Dame Magazine. It concerns a battle we're waging at our house against a horrific disease: Amyotrophic Lateral Sclerosis (ALS). Some may know it as Lou Gehrig's Disease. I wrote it to promote awareness, to reach out to others with such battles to fight, and because I want to make this disease pay.

My husband's family is stricken with the inherited form of that disease. He's lost a younger brother to it, aunts, uncles, cousins of all ages and now he is in the battle for his life. He's weaponless -- no treatment, no cure, no research that can even define the cause of the disease. Lots of theories, but nothing substantial to pin our hopes to. He takes vitamins and uses whatever equipment he needs to compensate for muscle loss.

Several organizations give us support and help. We owe so much to the ALS Association, the researchers they support and Rhonda Rittenhouse who keeps the monthly support meetings going. This monthly support group has provided us with new friends, information, and even some equipment that will give Derrol better quality of life. We've received monetary help through the MDA, Muscular Dystrophy Association. They help pay for equipment as well as quarterly visits to the ALS Clinic held at the Mayo Clinic in Jacksonville, FL.

We are so grateful to Dr. Boylan, clinical neurologist and friend, who runs the ALS Clinic and keeps giving us hope. Through him we attended an ALS Association conference for researchers in Tampa earlier this year. We were privy to the discussions concerning cutting edge research, most recent breakthroughs and best of all, we made friends with some lovely people from around the world. They are dedicating their lives to finding a cure for neuro-muscular diseases including ALS.

The first ALS Clinic Derrol attended caught both of us off guard. We sat speechless in a room at Mayo Clinic while specialists came to us. In one morning we saw more specialists than we had been able to see in the last seven years. They file in, do their tests, talk and ask questions, joke and smile and make us forget what horror has brought us there. He talked with physical therapists, speech therapists, occupational therapist, pulmonologist, well, the list continues. Whatever he needs to keep him functioning, they rush to help.

It has taken us a long time to 'admit' that we live with this disease. We'd like to just pretend it isn't here. But it just won't go away. So we acknowledge its existence and I'll be writing about it more in the future. You may already be familiar with the disease or a form of it if you read the book Tuesdays with Morrie by Mitch Albom or are familiar with baseball legend, Lou Gehrig's story.

The first question ALS victims ask each other is 'when were you diagnosed.' It is code for "How long do you have to live?" Most die within six years of diagnosis. Derrol, fortunately, has a slow-progressing form of the disease. He was diagnosed in 2005 and is just now getting to the point where he needs a wheelchair at least part of the time. Sadly we have watched other members of the support group decline from fairly independent to totally dependent with wheelchairs, feeding tubes and communication devices in mere months.

If any of you reading this are so inclined to help find a cure for this disease, please visit the ALS Association website and consider donating. By finding a cure for ALS, we quite possibly would also open the door to cures for Alzheimer's Disease, Parkinson's Disease, Muscular Dystrophy and many other neurological diseases.

Writer's Darlings

I recently discussed 'killing your darlings' with another writer. Seems that us writers have favorites and cling to them even when they are all wrong. A phrase that seems particularly expressive or alliteration that sings or a detour in the middle of an essay that leads nowhere, but sounds good. They jump out at us and we embrace them because they make us as a writer feel good. "Look at that, I wrote that, isn't that literate? Isn't that creative? Isn't that just exceptional?"

Often these darlings are just that 'exceptional pieces of writing' -- but they just don't fit the voice or the form or the topic. The wrong word in the wrong place no matter how beautiful the word is still the wrong word.

But essay writers know that often an essay starts with a 'darling' of a different sort. A favorite anecdote perhaps. A scene -- like the one of my husband walking across the parking lot with me as we enter a quilt show admonishing me to "don't even try to talk about those 'blankets' to me." And him standing with his arm around the guest speaker at the quilt show, grinning like an idiot while I snap their photo and listen to him tell her, "Quilts? Oh yeah, I like quilts, yep I like quilts a lot." It begs to be turned into an essay.

Recently I experienced an 'essay moment' while thumbing through my most recent issue of Mid-American Review. It is published by Bowling Green University and they actually published one of my book reviews there. Bowling Green was my Dad's home town and it is the college I would have loved to graduate from, if I could have had that opportunity. So I have a soft spot for the university and the publication. Otherwise, I probably wouldn't subscribe because I'm always intimidated to try reading it.

This whole intimidation factor came into play when I read a poem that appeared in the magazine. Now, poetry is even scarier to me than literary short stories. I started reading with the expectation of not understanding a word, but it spoke to me and I truly felt my world shift and my creativity soar and well, I turned it into an essay.

Of course my first choice to submit it was Christian Science Monitor. They always get first dibs on my kinder-gentler essays. This one though had a four letter word in it and well, it wasn't the usual fare I send their way.

To my surprise the editor liked it. And even more surprising, she did very little editing. And well, my little ode to poetry and all its angst is up on their website today in celebration of Poetry day or week or month, whatever it is.

It is one of my darlings. One that made me feel a bit vulnerable admitting my unsophisticated reading limits and the fear factor when addressing poetry. I don't know how readers will respond to the piece. For me it is a milestone. I feel it is one of my better efforts. I hope this darling proves to be worth keeping.