Where would we be without friends?

When the tough face
challenges,

-- their friends see them through.

That's the case these days as we reach out and ask for donations and support for the ALS Association, the Goldsmith Team and the Walk to Defeat ALS.

People have written checks, offered to walk with us, and asked what else they can do. Virginia Spiegel, a talented (soooo talented!) fabric artist has donated AND mentioned our cause on her blog and testified that the ALS Association is a worthwhile cause. The local quilt guild Cabin Fever Quilters is looking into contributing a raffle quilt so we can raise some more funds with that. Family and friends we haven't seen for more than a decade are demanding to know how they can give and what else needs done. New friends, neighbors, work place colleagues all want to help. And all of their prayers and good wishes keep us going as we face new challenges in our personal life.

We have never been ones to ask, we'd rather be the ones doing and giving, but in the last few years, we find ourselves on the receiving end of so many kindnesses and so much generosity that we can't think about it without getting tears in our eyes.

When Derrol's brother was stricken with ALS it was the 1960s and Tommy was 10 years old. The neurologists had no idea what it was, not even thinking ALS in one his age. Ironic -- he was playing Little League baseball at the time and was stumbling and falling -- these were his first symptoms. I guess he and Lou Gehrig had more in common than we ever expected. Tommy had just turned 18 when he died. He had wasted away to a near skeleton. His voice was gone, but he was as sharp as ever. For a boy/man of that age to watch his body turn on him and know there were no treatments -- no hope....

There were four boys and two girls in that immediate family and they all chipped in to help with Tommy's care and quality of life. Derrol, the oldest, would take Tommy to the high school and literally throw him over his shoulder to take him to classes -- up stairs and down -- rushing to not only get Tommy to his classes but Derrol had to get to his own. Everyone wanted Tommy to live life to the fullest. They all went to hockey games at the arena nearby and the hockey team adopted him as their mascot. Tommy's wheelchair still has a bumper sticker on it with the team's name and logo. All of these years later, he died in 1972, the wheelchair is a reminder -- as if we need one.

We look at our two grown sons and pray, "Not them, please not them."

We not only work for ALS funds to help Derrol, our sons, and to remember Tommy, but for my father. He had a similar neurological disease -- Alzheimer's Disease. We know that research in one 'tangle' disease as they call ALS, Alzheimer's, Parkinson's, etc. helps move research forward in all of them. Muscular Dystrophy is also related. So our efforts to help Derrol have a much broader service.

And, sorry, I can't seem to stop writing about this once I get started. One more thing. Our military men and women especially those who served in the Gulf War are from 35 to 60 percent more likely to get ALS than the general population. Now we see a cluster of ALS diagnosis in people who were involved with NASA and Patrick Air Force Base. There is a study going on right now to find out the common denominator.

Sadly most people stricken are hardy, athletic, healthy people whose muscles shrivel and waste and usually within 3-6 years they are totally incapacitated and die. About 90 percent of those diagnosed have no idea why they have it. It is called sporadic and hits for no seeming reason at all. Five to 10 percent have the familial or inherited form that Derrol was diagnosed with.

ALS Association funds research and offers support and supplies and equipment (at no charge) to patients of ALS -- I don't know what we would do without this group of people. Between our support group at ALS Association in Winter Park and the Florida Chapter as well as our dear friend Gary Presley, Derrol has quality of life and is learning about living with a disability.

Our friends running the Florida Chapter of ALS Association say we've set out a really tough goal to reach -- $5000. They're probably right. But I think their goal may be tougher -- a cure for ALS. We are 1/5th of the way to our goal -- with help we can make it! We live in hope, it is the only thing available to people with ALS until we find treatments and cures.

With help from our friends, we can get rid of this and many other nasty diseases that seem to target our best and brightest and bravest. Thank you for your thoughts, prayers, and donations. Just knowing that someone cares is a priceless gift.

If you care to donate, please click here and then push the Make a donation button, follow the directions and don't forget to hit SUBMIT! And please know how much we appreciate your help in this project we cannot complete alone.

Pity or Compassion -- what would you want?

My dear friend, Gary Presley, fellow writer and author of the revealing and thought provoking memoir "Seven Wheelchairs: A Life Beyond Polio" wrote an important opinion piece for his home town paper. The link takes you to the comments. To read the opinion piece, click on the title "Lewis Trades on Pity."

Gary's an old hand at a life lived with a disability --he's spent the last 50 years in a wheelchair. Some of the people commenting on his opinion piece attacked him for not appreciating Jerry Lewis; for not looking past a man's career as a non-profit spokesman which made those he 'helped' the object of pity. Perhaps pity and compassion are synonyms, but there is a world of difference when the two words come to life.

My husband, new to the wheelchair crowd, has experienced both pity and compassion and we both prefer compassion. Actually what we both prefer is to see people look him in the eye and see the man, not the wheelchair or the disability.

For him, the wheelchair has become a kind of validation -- 'yes, I truly am disabled.' Until then people would judge his uneven gate, his slow progress, his use of motorized vehicles, even his slurred speech and make comments intended for him to hear. Comments like 'if he would go on a diet, he could probably walk.' Or 'drinking before noon -- look at him stagger. How disgusting.' Or 'those carts shouldn't be allowed here, they ruin our enjoyment.'

Of course now with the wheelchair we deal with people who treat him as if he were invisible, speaking to me as if he weren't there. Restaurants either don't have easy access or they hide him in the back where patrons won't see him. Other than Olive Garden -- they see the man, talk to him, smile into his eyes and treat him as a respected customer. Parking places that accomodate a side lift are harder to find than you think. Able bodied people who park in handicapped parking places -- there should be a special place in purgatory for you....

My husband has broad shoulders and lets it all just roll right off of them. I want to spit and hit and make stupid or judgmental people understand just how wrong and disgusting they are.

He knows that his present condition is much preferable to what is to come: degeneration, helplessness and death.

He has an inherited form of Amyotrophic Lateral Sclerosis -- ALS -- Lou Gehrig's Disease. A death sentence that usually comes within 3-6 years of diagnosis. Thankfully he has a slow progressing form of the disease.

No cure, no treatment, no remission, and no explanation. Ninety percent of people who get this disease have no clue as to why. Our military, particularly those who served in the Middle East have a much higher rate of ALS among their ranks. Now a cluster of ALS diagnosis among people associated with NASA and Patrick's Air Force base are showing up. Research is going strong and getting closer and just recently discovered a new gene associated with the inherited form of ALS that will make research even easier. But still my husband's brother is dead -- died at the age of 18 from this rare disease. His aunt, great aunt and more than a dozen cousins -- all dead of ALS. So we would like to see a cure or treatment before our children must face this disease.

Gary on the other hand is in the wheelchair for the long haul. And he knows the problems of life before the Americans with Disabilities Act and those that face him each day. He has no choice but to use the wheelchair and unless he wanted to live his life on welfare or worse, he needed to get out and work. But simple things like getting into buildings, using public bathrooms, opening and closing doors, being treated like a human being all became major hurdles.

One of his jeerers suggested that he just stay home if he didn't want to be pitied. Gary's response to such comments is usually a shrug of the shoulders and resolve to just live his life because staying home and waiting to die is no alternative. But when a major spokesman for a non profit organization encourages pity in order to get money -- it seems like he is giving with one hand and taking away with the other. Everyone has the right to live their life with dignity.

Thankfully the ALS Association -- at least our experience with the Florida Chapter -- is all about respect and finding a cure. We are all in the battle together. Most of the leadership have lost someone to the disease and know the struggle that the victims of ALS --the patient and the family and caretakers -- are in for. It is a mean disease that eats away the muscles, leaves a person weak and helpless all the while they watch the progress and have no tools to stop it.

In the end all we have left is our love and dignity and no amount of money raised is going to replace those valuable commodities.

Do we appreciate help with the overwhelming costs of maintaining quality of life for my husband? You bet ya! But should assistance be given at the cost of my husband's self-respect? NO!

A power wheelchair costs more than $20,000; a simple walker $300; a van with a lift more than $65,000, renovation of the bathroom another $30,000. A lift to help get him from bed to chair $5000. It isn't a cheap lifestyle although the majority of people with disabilities live on low incomes and without help can't afford to renovate their environment to accommodate their basic daily needs.

If you see a man in a wheelchair it could be Gary or my husband -- please look him in the eye and smile. See the person not the disability or the equipment. Treat him as you want to be treated and don't judge. Please reserve your judgment for referee's calls in football games.

Know that one man is a gifted writer and the other devoted much of his life to helping kids, playing and refereeing sports, and working as an accountant paying thousands of people accurately each week. Both men spend their lives working despite the road blocks thrown in their paths. They pay taxes. They vote. They love. They have favorite sports teams and adore their kids.

They are just like you and if that scares you -- it shouldn't. It should give you hope that if it were you in that chair, you would be no different than these courageous men who struggle over things you take for granted. And yet they smile and enjoy life and take on the ignorance and try to provide knowledge and wisdom about life with disabilities.

My husband can get in and out of buildings. Can use public restrooms, and lead a fairly normal life in a wheelchair because Gary and people like him stepped up and said, "Americans with Disabilities" deserve equal opportunity. Because Gary lives his life with responsibility and respect, my husband can as well.

I have to add that Jerry Lewis lives his life with his own disabilities -- so maybe he is to be pitied.... But I think maybe he would not appreciate that.

Seven Wheelchairs off and rolling

Dear, dear Gary Presley has made his debut as an author on the talk show circuit and has done spectacularly!

Who knew he had a sexy drawl and looks pretty flashy in red! Listen to the audio interview recorded on October 3, with Ben Kieffer of The Exchange on Iowa Public Radio. Gary also did a reading at Prairie Lights Bookstore in Iowa City.

Seven Wheelchairs, his memoir, currently ranks at 77,822 on Amazon.

Way to go Gary!

Here's a copy of the review I posted at Amazon:

"I've been fortunate to read bits and pieces, essays and writings of the author's for several years as a fellow member of the Internet Writing Workshop, including much of what is his memoir. But it wasn't until I sat down to read the finished product that I realized what an emotional and insightful read it would be. It is a given that this is stellar prose. The writing alone is enough reason to buy the book and read -- and reread it.

But the truth and power of those words. He answers the questions I never thought to ask beginning with the memory of those last steps before polio took away his legs. He told of being confined in an iron lung, not with pity or melodrama, but through the eyes of a devastated, angry teen age boy who was confused and frightened. A boy who had gone from working on his lay up shots to a non-entity swallowed up by a machine. And we move forward with him. We see him making an independent living, but more than that we see him coming to terms with his physical limitations, learning the landscape, what it means to live with disabilities in plain sight, in mainstream culture. We see him moving beyond the anger to find something we all wish we could find -- his true niche where he belongs and can accept and be accepted for the man he is, not for the equipment he must use.

Since this is written in connected essays, much of the problem that arises in first memoir and fiction is left behind. No awkward transitions, no tap dancing to get from one important moment to the next. It is a tightly written, powerful book that takes readers inside of the world of disabilities as none before. And inside of the life of one very human, but determined man.

I met Gary Presley when I joined the Internet Writing Workshop. His writings, his self-deprecating sense of humor, his truth, and his generous supportive ways drew me to him. When my husband became disabled, Gary jumped right in and helped us find our way through that alien culture called 'disability.' Who knew better this new landscape than a man who had been wheeling through it for nearly a half-century!?

He's never maudlin nor melodramatic. It is a book that can be read in pieces or as a whole and the writing itself stands strong alongside the best. A must read for anyone who knows someone living a life fraught with disabilities. A must read for anyone who has ever seen a person in a wheelchair and looked away."

The photo was taken by Ruth Douillette's husband.

Seven Wheelchairs available at Amazon!!!

Whenever a bell rings, an angel gets his wings AND an author gets published. Do you hear that bell dinging? Gary Presley's memoir is listed at Amazon and we can pre-order his books for delivery in October. Tra-la- tra-la. The angels are singing and waiting for their books to arrive.

I've placed my order. Have you?

Why would I, you ask? Well, evidently you don't know Gary if you must ask. He's unique, and his life's story is a delightful blend of humor, anger, frustration and unvarnished truth with a touch of romance. You think life has been rough for you? Think about turning 17, anxious to step into manhood, ready to grab the world by the tail and make your mark. He was so ready to take that step and then polio made it impossible for him to ever take another step. For the past almost 50 years, Gary has fought for every minute of quality of life. First entombed in an iron lung he helplessly lived at the mercy of white hatted nurses, orderlies, doctors and that unfeeling machine that pumped air in and out of him when his own body refused.

His book "Seven Wheelchairs" tells about his journey 'boob high' to the world. He doesn't cover up, draw back or sugar coat anything.

The book, beautifully written, honestly told, is enough reason to put out $17 for a copy. But for us there is more to the story. Gary has been a friend for almost a decade, beginning as a fellow writer at the Internet Writing Workshop and then becoming my strength when my husband was diagnosed with ALS and we had to quickly learn about living with a disability.

Gary shared tips and contacts concerning wheelchairs, navigating in one, and where not to go. He mentioned opening doors -- who knew it could be so difficult to get into and out of a building or room based solely on the type of door handle and hinges? Who thought about taking along a urinal for those times when a handicapped accessible bathroom doesn't present itself.

Who knew how much anger we would feel when someone parked in a handicapped space, leaving my husband to try to walk across the parking lot. Then find out they were making a delivery -- no handicap sticker, just a big old Mercedes and a lot of ego, and the temerity to tell my husband that it wasn't a big deal.

Gary knew everything, including the anger. It took him alot of years to laugh it off. He's helping us to do it in a much shorter time.

If anyone wants a clearer understanding of living with disabilities, how to socialize and interact and understand a person who must go through so many more hoops just to get his pants on in the morning, then read Gary's book.

Birthing a book

The joy of bringing a new book into the world sets my blood swirling and my lips spreading into a big old grin. I love being privy to the back story, to the formation, to the creator's frustrations and triumphs when writing a book. I've been allowed to view this grand event several times and each time I get giddy with joy at their triumph. The fact that I may have contributed in some small way makes me content that I've not lived this life in vain.

Once again I've been watching a gifted writer put his words together into a new book. Today I read a piece he's compiling from his memoir to offer to literary magazines. He has the heart of a poet with a touch of bawdy humor here and there. My kind of writing.

And yet, the subject of his memoir, it could be so maudlin and oh woe is me or he could bluster his way through and say 'it ain't so tough.' But he does none of those things, he gives the reader total honesty. Sometimes more than perhaps you'd want because the subject does make us face our own mortality. The author was stricken with polio at the peak of his young life, as he was stepping from childhood sandals into adult dancing shoes. Well, he could say it better. But by the age of 20 he had spent time in an iron lung, gave up his hard fought, almost achieved independence, and became totally dependent, even more so than old Blanche Duboise, on the kindness of strangers. His memoir takes us into a world where he travels by wheelchair 'boob high' to the world. I think that should be his title, by the way.

He's been struggling with rewrites for the past few months. Next he will face marketing and book signings and all of the things in between that writers rarely think of when trying to get one book sold. I hope he sells tons of books, makes the best seller's list, and sits down to write several more books. He is a voice that will add greatly to those already shouting from the bookshelves.

Watch for the name: Gary Presley. He has several items available to read online, his website and his blog site and his offerings to the Internet Writing Workshop blog as well as their book review site. Here are a few urls to consider:

http://www.nd.edu/~ndmag/su2007/presley.html
http://www.nd.edu/~ndmag/su2004/presley.html
http://dir.salon.com/story/mwt/feature/2002/03/07/eating_ants/index.html

Gary isn't my first encounter up close and personal with the pains of birthing a book. I worked for a year with Peggy Vincent as she labored over her memoir Baby Catcher: Chronicles of a Modern Midwife. Another voice that needs to be heard. And her sense of humor. I snorted my way through that book. Spit coffee on my keyboard, laughed out loud and scared the cat. And then so poignant. A life well lived. But oh, the book she could write NOW about the life she's living AFTER Baby Catcher.

And Linda Swink, a dear friend, and lifelong member of Toastmaster's and the book "Speak With Power and Grace" that she wrote about public speaking. One of the best and most helpful books I've read on the subject. It would have been longer, but she allowed me to do a bit of editing for her. "She's currently finishing up a much needed reference on men who have had a military installation named in their honor, titled Lest We Forget: The Naming of Our Military Installations." It should be published in 2008. The heroes she uncovered in her research -- it is a litany of bravery that has for the most part been long forgotten. A must read even if you aren't into military history and research.

I've reviewed a number of books through the years for various venues from Publisher's Weekly and Kirkus to Crescent Blues E'magazine and Gumshoe Review. I like to think that my reviews may have contributed a bit to the authors successes. Well, there might have been a few that I might have been a bit detrimental.... But several quote my reviews on their websites and on the back cover of their books -- those help me feel, again, as if I'm contributing something good and worthwhile.

And maybe, just maybe, after having reached my Nanowrimo goal ahead of schedule, maybe someday I'll get to go through this process with my own book. Keep your fingers crossed.