Sunday, March 29, 2009

It's raining opportunity

Did you spend an hour in the dark on March 28th? Good for you! If you didn't, why not? I know -- March Madness.

It seems like we live in a constant state of 'madness' these days. At the library where I work, it is weeding time. Each librarian is taking a section and withdrawing books that have gotten little or no use or are in such bad shape they can not be repaired. Those still in decent shape will be given to The Friends of the Library organization to sell at their bookstore. The money they earn is used to support the library. Our budget has been cut, fines raised and the time the library is available to the public has been cut. The county is gearing up to make a second wave of layoffs. No one knows who will be left or what will be left of the library afterwards. We are competing with fire departments and street cleaners. At times like these people forget the importance of books and learning and Carnegie's concept of free access to knowledge for EVERYONE! We give up that and we've lost our future.

But, back to the weeding. The 332 section or the financial section of the Dewey Decimal cataloging system are so out of step with today's reality that the librarian sees no reason to save a single book. Suzie Orman and the whole group of know-it-all financial investment gurus -- in the trash. What we thought was a good plan ten years ago -- not such a good plan. Perhaps my parents -- products of the Great Depression -- had it right: live within their means which means they don't buy unless they have cash in hand. And save a portion of their income. For them it was a bank savings account and savings bonds. Of course those of us who set side a portion of our income for investment through our company savings plan found that investments can quickly turn from accumulation of wealth to disappearance of retirement and nest egg stashes. Money is such a problem. Or is it the money?

Have you noticed that often the truth comes out in a simple cast-off comment?

A friend told of seeing a middle school group walking past an exhibit on the Washington Mall in D.C. The exhibit featured an American reservist who had served in Iraq, an Iraqi man who had lived and experienced much of the war in his home country, and a burned out car from one of the many bombings. The young people did not want to engage in conversation with the two, but one young man, as they passed the exhibit called back, "I'll give you $3 for that car."

Is everything about dollars and buying to Americans? Did he know that people could have died inside of that car? Did he care about what the car represented or symbolized? Did he want to live in ignorance, passing up a chance to understand or at least hear what these two people had to offer? Or maybe he just was late for the next stop on their vacation itinerary.

But it seems like the first thing we think about is buying our way out of something rather than working on our attitudes and our individual contributions to the problem as well as the solution.

This is our opportunity for change. REAL CHANGE!

Rather than listening to our government talk about getting consumers spending again, refilling the coffers so we can borrow and have credit lines again -- maybe we need to think about how we can improve our lifestyle and replace the concept of accumulation of wealth (keeping up with the Jones) and image, with better ways to use our wealth to improve our country and quality of life for all. Maybe a change in thinking about our civic duty. Change the focus from why our government isn't doing a better job with FEMA responses. Why the Red Cross isn't taking care of everyone, why some other organization doesn't feed the homeless. And instead, we should look at our individual offerings. It is time to step out into the world to make a difference.

During the Great Depression my grandmother was known as a great pie baker. She was known to the legion of men and women and children who lived like hobos and tramped the roads looking for a job or food or hope. She did what she could with what she had, never putting her burdens on those in need. When foreclosure took the family farm though, no one was there to help her.

Did you ever think you would see refugee camps in the United States? I never thought I would see homeless on the streets -- now they are just faceless, nameless parts of the landscape. What can we do?

As far as being good consumers -- yes, we need to continue to shop. But not the mindless spur of the moment mall orgies. Make reasoned within-our-means purchases. With our tax refund in hand we're using it to purchase a couple of items we've been putting off acquiring for awhile. Maybe there are a couple things you could invest in now rather than later. Hopefully it is American made, but other countries need our help, too. I heard today that the American shopper is what is holding the world economy together. Alot of pressure. It gives new meaning to that popular adage: "When the going gets tough -- the tough go shopping."

We absolutely need to find our moral compass, our integrity. It is time to grow up and act with maturity, no longer spoiled teenagers squandering our allowance on fads, fast food or Playboy magazines. Or offering $3 for a burned out car.

Sunday, March 15, 2009

Vote Yes with your light switch!

It is almost time to step up and take a stand in favor of our earth. Vote NO to global warming! Switch off your electricity for one hour on March 28th, 2009. The time is 8:30 p.m to 9:30 p.m. Eastern Standard Time (I think).

This is the third year for this Earth Hour event, started in 2007 in Australia. Millions of people participated and the difference could be seen from space as well as on earth -- Sidney went black. Imagine how much energy was saved just by that one hour. The next year the program when global and people in countries around the world participated. Now we can do even better.

Turn off all electricity (okay, maybe not life support!) for one hour and tell ghost stories or roast wienies over the grill or enjoy candle light and wine. Or just go to bed and get acquainted with your spouse -- by touch.

Plan a candle light party. Join with your neighbors and do the whole neighborhood blackout and party in the streets. Be creative and do something good for your planet.

I heard today that the economic downturn is proving a bright spot of hope for the environment. People are throwing less things into our landfills. The waste management people know -- the men and women who pick up your trash see the difference. Almost 30 percent less waste because people aren't buying big box items and because we are repairing rather than disposing of things. Good for us! Regardless of the reason, we're making progress. Let's keep up the good work!

The results will be passed on to the Global Climate Change Conference in Copenhagen later this year.

For more information about this project, visit the Earth Hour site. A fine and inspiring video can be found at Star 94 FM radio site. Click on Earth Hour video.

Thursday, March 12, 2009

Where would we be without friends?

When the tough face

-- 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.

Sunday, March 1, 2009

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.