The majority of us are here because as members of ALS families a set of life’s circumstances has put us in the same boat. Yet, there are people present today, the likes of Dave Miller, Sarah Hilmer, Lora Clawson, Christina Stayeas, Noah Lechtzin, and Dr. Jeffrey Rothstein who have made the choice to devote their life’s work to the treatment of patients with ALS and to the research which will ultimately lead to its cure. Allow me to speak for the people in my boat and say that each of us holds each of you in the highest esteem.
It has been said that “life begins at 40.” For Steve it was at age 44. I am going to begin by looking back for a minute here to the days when Steve was first diagnosed with ALS. But frankly, “been there, done that”- and, like many of you here today, we have moved on yet the recollection is still painful. In September 1994 we sat across the desk from our family physician and watched him slide a slip of paper across the desktop to us which landed like a missile in my hand. On it were written three words “Amyotrophic Lateral Sclerosis.” The diagnosis fit, like a too tight shoe. When asked for a prescription the doctor said, “I hope that you each have a faith, because you are going to need it.” Counseling us to seek help wherever we could find it, he sent us on our way. “Our way” began with months of paddling upstream as we tried to redefine our lives. Interestingly, the life raft came in the form of a letter that was sent by a neurologist to a family friend, the woman Steve calls his angel, who had written to clinics throughout the United States searching for information and advice. The doctor’s words of encouragement were these, “tell your friends that it is possible to have ALS and to lead a happy life.”
And so it began - Steve’s determination and devotion to beating ALS, not just long term, but each and every day. His personal game plan has always been to “play to win.” And so, one might ask, what does it take to be a winner when the stakes are so high. Steve has learned to adapt by making the most of the resources available to him. He is committed to being happy, no matter what curve balls life throws his way. When you meet Steve, you can’t miss the indomitable grin and the twinkle in his eyes. He’s a hero and as he fights to be a winner, in my eyes he has already won.
Steve and I are “can do” people who believe with conviction that the quality and quantity of life are both vastly determined by attitude. Who would have ever thought that this disease which stalks in silence could also smile on us? But it surely has. We have experienced some of the best of times while holding onto each day as if it were the carousel’s brass ring.
And, so, exactly what it is, this beautiful in life…well, essentially, there is no “exactly” about it. Sometimes it is the ephemeral, the unforgettable memory of the glint of sunlight on the frosted tip of a pine in Yosemite Valley, October 1997, the morning after a snow. I’m sure I’m not the only one here today who thrilled to the sounds of music as a youngster when Mary Martin and then Julie Andrews sang about raindrops on roses and wild geese that fly with the moon on their wings. For me personally, the beautiful in life became defined by a special birthday card that was given to me by my father when I was a young girl. Inscribed on the front was a poem by Brad Meltzer entitled The Beautiful in Life”. In part, “some breathe it into music, some mold it into art, some shape it into bread loaves, some hold it in their hearts.”
For Steve and for me, most often the “beautiful in life” is discovered in an appreciation of simple pleasures. Over the course of the past decade we have found ourselves enjoying our time together more and making the most of every opportunity to travel, be it a walk around the lake not far from our house, or a drive through the Smoky Mts. of Tennessee. And yet, the best of times are spent at home on our back deck when as “shut-ins” we shut-out the rest of the world. We sit in silence and watch our deer surface from the woods for a nibble on the corn pile we set out each evening. We love to watch the cardinal which is the harbinger of dusk. In years past we would share a chocolate chip cookie from the oven and a cup of tea. Even now, the tea goes in Steve’s feeding tube as we keep company.
Our calling card is known for tales of adventure, particularly days spent onboard cruise ships floating along at sea. (And by the way, in small print we have had our share of bumps and bruises the likes of a nasty head cut when Steve took a fall at Dulles Airport eight years ago. He flew to Alaska with a makeshift tourniquet tied around his forehead on the eve of a sail of the Inside Passage. We found ourselves surrounded by darkness in the great NYC blackout of August 2003 as we prepared to jump onboard ship for a 35 day sail to Greenland and Russia. During that sail we were treated to a hurricane off the coast of Greenland that saluted us with 50 foot waves and 90 mph winds. The only thing that wasn’t moving on its own accord on that ship was Steve in his Permobil chair. And boy, did we have fun!) We have cruised the Panama Canal, the Caribbean, and most recently, Bermuda. We have a few pictures here to share with you. And following the presentations we invite you to stop by and see a slide show Steve has put together on his ERICA computer.
Steve was an avid tennis player in years past. He has traded his racket for front row seats at women’s professional tennis matches. Road trips every spring to Amelia Island to watch the Bausch and Lomb tournament are a sure thing. This past summer we did the US OPEN for our first time at Flushing Meadow, New York.
When I was growing up my parents would admonish me to “save for the rainy day.” Well, we are now living the rainy day, and surprisingly, having the time of our lives. And oh, did I mention, we do not employ a professional staff in our home. I continue to work nearly full-time, and the days that I go into the office, our friend, my co-worker, Ray, comes to be with Steve. We have the support of a group of people who have become family, helping us to shine, and collectively calling themselves “Steve’s Team.”
Initially, people aren’t quite sure what to make of us, this man with a top-of-the-line disability, and the no-nonsense woman who thinks in first person plural and will let nothing stand in the way of her husband’s care, his needs, and his happiness. In a recent speech to the ALS community, Michael Jack, a fellow ALS warrior, said it best ..
“ALS is a terrible disease, but it can also offer some blessings. Most notably, it seems to bring out the best in people. I have felt more warmth, concern, and generosity in the past few years than many people see in a lifetime. Look around you; that goodwill is on every face in this crowd.”
I agree Michael. I see it here today. We see it in our travels- people coming forward to lend a helping hand. We have become accustomed to always being the first in every line and having VIP treatment for all our needs. There is good will on the faces in many crowds. Steve’s smile has disarmed the hesitation of others and touched as many hearts as it has opened doors.
The beautiful in life took on a new dimension in March 1997 when our first grandchild Miss Emilie was placed into her grandfather’s arms for safekeeping. Over the past 7 years I have watched the two develop their own ways to interact, communicate, and have fun together. I have witnessed the toddler, 18-months-of-age, stand behind Steve’s power wheelchair, place her hands on the chair’s base, and start to push. The power chair reminded me of a locomotive with the engineer on board…and oh! The little caboose “I think I can..I think I can.” I have steadied her hand as she gave her compliant grandfather Myotrophin injections at the age of 3. It was the 4-year-old Emilie who said “Bapas and I can still play together. We just play in a different way.” Steve has indulged her as she has poured tea down his feeding tube and has become a professional at tracheotomy care.
At 5-years-old Emilie was talking with me on the telephone one afternoon and said, “Please tell Bapas that I love him Bigger Than the Sky.” At the age of six, Emilie told us one day, “I would like to help people with ALS and plain people too.” Three weeks ago, at the age of seven, she heard the word “handicapped” for the first time, and had no idea what it meant.
We returned recently from a visit to upstate New York where we spent time with Emilie and her family which has grown to include a younger brother and two little sisters. I had my first experience with the “empty nest” syndrome during that visit. Emilie, Steve, and I were together in the living room at the Inn where we stay and at one point I excused myself and left Emilie and Steve alone for a short period of time. Upon returning to the living room area, there was no sight of Emilie or her grandfather. This confused me. I was positive that I had left Steve’s Permobil in attendant mode, precluding his driving away on his own. Curious, I left the room and roamed through the Inn, only to find the mite of a little girl commandeering the behemoth chair with her docile grandfather smiling his approval and encouragement – along for the ride. I was reminded of Mary and the little lamb…
In this case, wherever Emilie went, her grandfather was sure to go!
The love that the two share has given us so many memories to hold in our hearts. Last year, we published Bigger Than The Sky, the true love story of Emilie and her grandfather. The book is my tribute to the extraordinary little girl and the incredible man who will always belong to each other.
The message we hope to convey is that no matter what a person’s circumstances are in life, it is possible to be productive and happy, given a faith, a willingness to adapt, and the resources and determination to succeed. Do not lose sight of hope. It allows you a dream. In Steve and my lives, we have a little girl who has taught us about the beautiful in life in a very big way….a child who is now known to walk up to strangers in wheelchairs and start to push. It is our dream, that by telling of Emilie’s compassion and her commitment, through family, friends, church groups, and school children, we can take ALS out from being a closet community and touch the hearts of faces in every crowd by showing what it means to LIVE with a serious disability and by changing the world’s perception of the disabled, one little girl and her grandfather at a time.
And so, in parting, Steve and I would like to encourage each of you, today, tomorrow, this week, this month, this year… to get into your boats, set sail your dreams, explore, experience, and celebrate the beautiful in life.
BACK to TOPSecond Annual MDA Sponsored ALS Conference Have a Great Day
It’s all a matter of perspective when you think about it. Our perception of the proverbial glass which is half-full or half-empty affects our attitude and in so doing can alter our approach to life. When Sara called to ask us to speak at the fall MDA /ALS conference she set the topic. “How did you get where you are today in terms of your attitudes” was the starting point. I conveyed to Steve that we were being tapped to provide some insight to our fellow PALS, called Sara back and said, “Ok, we’ll do it”.
About a week later, Sara called again and said to me, “Helene, we don’t want to know what a good day is like in your life. We want to know about the bad days.” To which I quickly responded, “I don’t ever have a bad day.” “Ah, come on”, she said, “Everyone has bad days.” I have given this some thought and have come to the conclusion that we both were right. There are times when I can’t get a foothold. I admit it. (Isn’t that the first step to recovery from sheepishness?) But it isn’t easy to acknowledge for someone who was born stubborn and has grown strong. And so I counter with the follow-up. We don’t have a day to spare. There isn’t the luxury of “chalking this one up, or rather out.” Time is too precious to those of us who live on the edge of life.
Understand. Our lives were shattered by the ALS diagnosis. And no matter how conscientiously and concisely we put back the pieces, the seams are always there. We are forced to live life one day at a time, targeting problems like a skeet shoot and knocking them out of a clear blue sky as they come along. Into each day we must infuse some happiness, no matter what the challenges or concerns we face because LIFE is that precious to us. An appreciation of the beautiful in our lives can be something as small as a cup of tea shared on our back deck, or the experience of the force of a wave gaining momentum on a raging sea.
My mother used to counsel me when I would start the series of “what-ifs” that inevitably came attached to our circumstances. The voicing of fears of the day when Steve would no longer walk or talk were met head-on by her admonishment. “Do you have a problem today?” she would query. “No, but …” I would begin in response. She would hear none of it, encouraging me to say my prayers and face off with my troubles as they met me, not long before. Over the past eleven years since Steve’s diagnosis we have become more secure as time passes us by and have been able to step back from the horror that threatened to overtake us initially and now breathe a little easier.
Or is it perhaps, I wonder at times, that after living a way of life for so long we no longer know any different? Perspective leads us at each fork in the road.
I learned a mighty lesson years ago from Lee Stevens, wife of Paul Stevens, ALS survivor. Lee was in a Bed, Bath, & Beyond store one day, counting minutes away from a vent-dependent husband who awaited her return in their van. While she raced up and down the aisles making her selections the clock ticked faster. By the time she got back to the van, within her allotted ten minutes, she found an unresponsive Paul. The battery on his ventilator had died. And so, she feared had he. Trained in CPR and support of his life she made the checks to ascertain whether or not he was breathing and then she called 911. While she waited for help to arrive, Paul regained consciousness. She and the rescue squad used an ambu bag to give him breaths, simulating the function of the ventilator. Off they sped to the hospital where Paul was admitted to the Emergency Room for immediate attention.
It was a thankful Lee who later that same evening tucked her Paul into his bed back at home, easier to return to their normal routine than to hospitalize this man who can neither move nor speak. It was well after midnight when Lee finally made her way to the kitchen in their home and prepared a cup of tea. She told me afterwards that she found herself grabbing for the counter top as she began to tremble, the aftereffects of shock. As the reality of what had happened came into focus she said these words to herself, “Oh, boy.” Well, I was thinking to myself at the time this adventure was told to me, you can bet I would have said something a whole lot stronger than “oh, boy”!
That was then, this is now. In the spring of this year I found myself dealing with a “shame on me” injury, having taken a dive off of a chair on rolling wheels as I strained to right a picture of Steve which hung crocked on a wall. Three days after being told I had fractured my shoulder we left for Florida to watch the Swiss tennis star Patty Schnyder play in Amelia Island at a WTA sponsored tournament, me driving Interstate 95 with my arm in a sling cradled against my chest. For eight weeks I used one arm and my teeth to care for Steve. Looking back, I still shake my head and wonder how we both did it. Determination, and a dash of stupidity, I must admit. What could have been my waterloo was relegated to second string as I stepped up and did what had to be done. For the record, do I remember them now, the struggles and strains which came with the experience? Not really. What I do remember though is Patty speaking into the microphone during the presentation of trophies ceremony as she searched the crowd to find Steve’s face. Her thank you to him for being there for her turned what began as an “Oh, boy” moment into a cherished memory.
I smile. Steve and I have learned a lesson from our four little grandchildren who, as it seems to us, spend a good bit of their lives in “time-OUT” versus “time-IN.” On any given day, somebody is in trouble; tears are shed, blame placed, and punishment swift. And yet, if you ask any one of the four at the end of the evening, “how was your day today?” the response is always, “Great!” Either these kids have no concept of what “Great!” means, or they are able to put aside the day’s woes in short order. That’s what Steve and I strive to do as well.
Ultimately, we are each responsible for our own happiness. I know this sounds odd to say, but Steve and I have each experienced some of the happiest days of our lives over the past eleven years. For me personally, a quote by Dr. Albert Schweitzer helped me to carve out my niche years ago. “I do not know what your destiny will be, but one thing I do know: The only ones among you who will be really happy are those who have sought and found how to serve.” In caring for Steve, being his enabler as I so proudly tout these days, I have found my own way to battle ALS and to win. We are gifted people, Steve and me, blessed by the support of Steve’s Team, an ever growing group of individuals who are committed to serving us. I like to say that Steve and I are “dependently wealthy.” A “hand-out” is just that…a hand extended on our behalf. We shake it.
And now, wishing each of you a “Great!” day, I have the privilege of introducing the person I admire most in the world, the man who, each and every day, makes my own life a walk in the park ---my husband Steve.
“Always be prepared to give an answer to everyone who asks you to give the reason for the hope that you have” (I Peter 3:15)BACK to TOP2007 MDA Heartsongs Gala Happiness Has Many Faces
It is an honor for Steve and for me to join you this evening and to give the
opening remarks at this year's Heartsongs Gala. We've enjoyed the chance to
meet some of you during the cocktail hour and would like to extend our
personal welcome to each of you this night. A special thank you is extended
to the organizers of this event for the time, effort, and caring that has
gone into the preparations.
Amyotrophic Lateral Sclerosis, sounds ominous doesn't it? The reality is, it
could happen to me, and it could happen to you. Back in 1994 we sat across
the desk from our family physician who slid a piece of paper across the
desktop which landed like a missile in my hand. On it was written - ALS,
more commonly known as Lou Gehrig's disease. It was a diagnosis that fit
Steve like a too tight shoe and put us both in the boat that we are in,
shipping us off to sail in a fight for Steve's life against a disease with
little in the way of treatment, and still no cure. In the early days we
spent lonely times, adjusting to the curveball that ALS had thrown our way.
Standing here this evening I am reminded once again that the loneliness
thankfully was short-lived. Dr. Albert Schweitzer once said, "I don't know
what your destiny will be, but one thing I do know. The only ones among you
who will be really happy are those who have sought and found how to serve."
Mattie found his way to serve- by being a peacemaker in the world. Each of
you has made the choice to join us in our boat not only by your attendance
here this evening but through your service to the MDA chapters and
ultimately to the people who are affected not only by ALS, but all of the
diseases under the MDA umbrella. Those in our boat hold each of you in the
You know, I used to say the happiest place I'd ever been was the Orlando
airport. It's such a fun place to be. well .if you aren't flying Jet Blue .
The families are either on their way to Disney World or preparing to return
home. The kids are wearing those hats with the Mickey Mouse ears, and
everyone seems to be in such a good mood and having such a great time. But
that was prior to the summer of 2005 when Steve and I had the privilege of
spending an afternoon at Camp Maria where the MDA was sponsoring a week long
summer camp for children with neuromuscular diseases. The campers who call
it "the best week of the year" were treated to a visit by local firefighters
that day and a parade of Harley Davidson riders. The camp means freedom for
these children and the chance to just be kids. Camp Maria is the happiest
place I have ever been.
I venture a guess that the laughter of the children here tonight, the
twinkle in Steve's eye, his smile that never waivers, are what you will
remember long after the lights go down on this event. How do each of them
handle their problems and hold onto happiness..Steve and I espouse the
Little Dutchman Method, plugging holes in the dyke as they arise and flying
by the seat of our pants to follow a whim or a fancy . or a tennis ball.
Refusing to let his problems get the best of him, Steve has changed the WOE
in his life to OWE. By learning to adapt and make the most of the resources
available to him largely through the MDA, he has made the choice to be
happy. He owes a debt of gratitude to the support of people like you who
help him to shine in the face of a top-of-the-line disability.
A few years back Steve and I had the honor of being asked to speak at an ALS
conference that the MDA sponsored at Howard Community College. In preparing
our remarks for the conference we were asked to give some insight into what
a "bad day" is like in our lives. I remember laughing and saying to
coordinator Sara Hilmer, "We don't ever have a bad day." "Ah, come on" she
admonished, "Everyone has bad days". Ok, she almost had me there. I
conceded, "We have bad times but we can't afford to chalk up an entire day
to the bad side. We hold on to a day as if it were the carousel's brass
Steve and I learned a lesson about dealing with a bad day from our
grandchildren, Emilie, Todd, Maggie, and Sophie. It seems to us that the
grandkids spend a good bit of their day in "time-OUT" versus "time-IN". On
any given day, somebody is in trouble; tears are shed, blame placed, and
punishment swift. And yet, if you ask any one of the four at the end of the
evening, "How was your day today?" the response is always the same, a
resounding GREAT! Either these kids have no concept of what GREAT means or
they are able to put aside the day's woes in short order and hold onto their
Those of us who live on the edge of life are ever mindful of the ticking
clock.. For Steve, breathing through a tracheotomy, the need for
suctioning can leave him fighting mucous plugs that could lead to
suffocation in a few minutes time. For me, I must think in first person
plural. I am tied to a monitor system when I am not in the room with Steve,
always ready to run at the first sign of distress. How does a dependent man
who can not walk, talk, or move, call for help in the middle of the night?
A question you probably have never thought about, nor should you have to.
But somebody has to. Who is going to care for folks like Steve? ALS is
appropriately labeled an "orphan disease". And the health insurers
introduced us to a new term, "custodial care", which means that home nursing
care for an ALS patient is not covered even by high option plans. Steve was
lucky enough to be lottery selected for a drug trial of a nerve growth
factor called Myotrophin, touted in early studies to slow muscle function
loss. He took injections twice daily for three years. The drug was
promising. And the drug was pulled. The FDA, as part of the bureaucracy,
had irresolvable financial concerns and decided to discontinue The National
Organization for Rare Disorder's application for its approval.
Many of us were taught to save for the rainy day. Those of us living the
rainy day will tell you that the costs of equipment, supplies, etc. can be
astronomical. Steve and I like to say that we are dependently wealthy. We
take the outstretched hand, your outstretched hand and shake it. During the
past decade there has been an explosion of technology to help the severely
disabled. Yet, the innovations come with a price. The MDA has helped to
fund such items as Steve's $35k power wheelchair, and his $10k assistive
technology communication system. You do the math. It adds up to a hefty bill.
One that we can never repay..
I recently saw a quote about the costs of care. A study found that Medicare
and private insurance covers less than 3 % of long term care costs, which
averages $87,600 a year.
$87 k and I venture a guess that is not for the care of an ALS patient. But
long term care is just the nuts and bolts of the issue. There is no price
tag that can assess the value of the tender loving hands-on care and
community support that is required to not only survive but to thrive.. Am I
right ladies ...and gentlemen?
Steve would like to now present to you his philosophy on beating the odds
and being a winner. Steve -
Remember to tackle challenges as they come your way, one by one.
Be determined to keep your chin up- even if you require a brace to do it.
Be willing to adapt to change, maintaining as much independence as possible.
Cultivate patience, beginning the day you hand the car keys over to your
Look for resources to facilitate your tasks.
View the glass always as half full versus half empty.
Let faith and hope be your guiding lights.
Make the best of it. The quality and quantity of life are both vastly
determined by your attitude.
Maintain a sense of humor.
Where there's a will, there's a possibility.
As Mattie advised, "Remember to play after every storm".
In conclusion -
I would like to end our remarks this evening with a quote from the 19th
century French poet Charles Baudelaire. "The lover of life makes the whole
world into his family." By your presence here this evening you have
demonstrated your willingness to be a part of our community, this family of
people who battle neuromuscular diseases. Thank you for your continued
support to those in our boat.
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