Of all the things in the land of caregiving that make me feel uncomfortable and inadequate, showers are the worst. I dread it every time. Steve is still much bigger than I am and he is mostly dead weight. The floor is hard and slippery, falls are dangerous, he gets very cold and shaky very quickly so I have move fast. All these things make it my least favorite, most worrisome job.
Yesterday, we stayed home from church and tackled the shower in the afternoon. This time, it went like clockwork. I did my job fast, nothing crazy happened and when I got him safely deposited back in his wheelchair, dressed and warm, I felt this little adrenaline rush like I had just won an Olympic gold in showering or something. As I was finishing up, he said something I didn’t understand. I asked him to repeat it, and he smiled at me, blue eyes twinkling, and said, “All dolled up and no place to go.”
And I don’t even know why, but it was the best thing in my day. Maybe just because he is the best thing in my life and it’s easy to forget how much he’s enduring until I see a spark of how he used to be. Because for all my talk about how hard it is for me to do showers, I simply cannot imagine how difficult it must be for him. To live inside a body that’s betrayed you, to put all your faith in a little woman who doesn’t handle pressure very gracefully, to die to your dignity, to silence the part of your heart that’s wired up to care for your family and let them care for you instead – I can’t even guess what this one thing is costing him. And it’s just one thing.
But through all these things, I get these little glimpses of the real Steve. The one who makes his temporary home inside that failing body. The one who focuses most of his energy on trying to get through each day right now, but is secretly filled with more wisdom, compassion, kindness and fun than anyone I know. He’s the one who has the exact right answer to “Do I look fat in this?” (I won’t tell you the answer, but it’s awesome.) He’s the one who could teach just about anyone to shave ten strokes from their golf score in one lesson. He’s the one who sat on the floor outside Whitney’s bedroom door for hours on the first night we took away her pacifier, knowing she’d need to cry it out for awhile, but not wanting her to cry alone. He’s the one who prays his family through the toughest seasons. He’s the one who meets with men who need help with things much more important than birdies and bogies. He’s the one who wasn’t able to venture out to a restaurant with us on Friday night, but sent along his credit card because he still wanted to buy his family dinner.
He is all these things and I could list a hundred more. There are things ALS can take away and things ALS can’t take away – but there are also these things that it can’t take but can hide. I suspect that the most important job I have in this process is to keep reminding myself of who Steve really is. Not ALS Steve. Just Steve. Amazing, strong, wonderful Steve. And to help the rest of the world remember too. And, most of all, to help Steve remember that we remember. Because a life well-lived cannot be defined by three dumb letters. It cannot be reduced to a diagnosis or a condition or a failure or whatever else swoops in and wants to label a person Over and Done before they’re actually over and done.
All dolled up and no place to go. Man, I love that guy.
With hope,
Bo
Bo, my first memory of Steve is the first time he shared with the congregation at Westside Church. I saw a man larger than life so boldly and passionately sharing the word of God he almost blew up the microphone 🙂 It drove the sound guys crazy! Sunny
Bo,
Your story this morning made me chuckle and brought a huge smile across my face! Why? Because it brought back a moment that I remembered from the ALS walk. Steve was listening intently to a story that friends were telling him, and in his quiet, sweet voice, he cracked a very funny, one-liner in response to their story. Witnessing the exchange and the twinkle in his eyes touched my soul, as it was like he gave us all….permission to lighten up!
The showers were such hard work, but I miss them. I really did love getting Jim clean and comfortable or all spruced up, as he would say. There certainly are things ALS can’t take, but they absolutely get hidden between and behind all the ALS related kerfuffle! Thanks for the reminder of the essential truth! He was not ALS Jim, he was Jim. Once after we finished a shower, which included him getting squeaky clean and me getting wet, he looked up with a smile at me dripping and typed “and a good time was had by all” which has been a life long catch phrase for him.
Hi Bo & Steve…your blog today reminded me of something that happened last week that I had meant to write to you and then got distracted. I can’t remember exactly which early am it was, but somewhere between Tues (9/16 & 9/18) and Thursday, I was awake at about 3 am, and thought of you both as I often do, and your “night shift”…and was praying for you, when the LORD reminded me of the story of David, when he was thirsty & longed for a drink from the well in Bethlehem (had to look up the reference, 2 Samuel 23: 14-17) and his 3 mighty men go and attack the Philistine army and brought water out of that well, to David…anyway, David was so aware of the sacrifice that they had made for him, that instead of drinking the water, he poured it out, “to the LORD”…and somehow…don’t know if I can make this make sense to anyone but me or not, but what He told me in that moment, was that the water was Steve. Too precious…too valuable…that his life is being “lavishly wasted” and poured out for the LORD….I love you…hope this blesses your heart the way it did mine! It is an honor to know you and pray for you both! 🙂
When I was visiting last week I caught those glimpses of Steve all the time. The one that made us both laugh out loud was when I was just getting reading to pour his “lunch” into the feeding tube and he went “Boo”. I jumped and he laughed! I was so nervous about spilling his lunch on his lap that I was really consentrating and he saw an opportunity to catch me off guard!!! I still laugh about that. Steve never misses an opportunity to tease someone or bring a smile to their faces. Again, sure wish I lived closer!!! I pray for more strength for you and Steve daily!
9/22/14
THANKS for sharing the most intimate details. It must be very difficult and yet the most rewarding LOVE relationship. I can’t understand it all but I do know that your love for each other is very real, genuine, and authentic. Please keep writing. The beautiful colors come through and I can hear the music and melody of true love.
Sincerely,
William Hummer
Danville, Illinois
Who Steve is to me is the man who was speaking at Westside my very first visit. His words reached in side me to a place longing for a church home, and that was all she wrote. No matter how much his physical appearance may change, that commanding presence is firmly fixed in my memory and always comes shining through. I thank God for Steve, for being the one whose words showed me the way home. Adore you both.
My great uncle had ALS. He was an amazing, man of God. Although he’s been gone 17 years now, I will always remember his words. He could only move one finger but could type the things he wanted to say on his computer. He always said there was one thing his disease couldn’t take away. A Loving Saviour (ALS). Amen! Praying that thought gives you hope and perseverance today.
Steve & Bo – I cannot find the words to express the value of your blogs. So many of us love you and pray for you and stand with you. And feel so helpless. And to know that you are willing to be transparent and honest in sharing your journey is such a blessing. You communicate to your minds but also to our hearts, which at the same time ache for you and cheer for you. Love and a huge hug from Colorado. Wish we could deliver in person!
Your post is a blessing. A true love story.
I feel like this is one of the most painfully beautiful things I’ve ever read. My husband and I have a relationship that I consider a pure gift – one I feel may be similar to yours and Steve’s. I am 51 and he is 57 and he was recently diagnosed with a rare heart condition. Though not even remotely as threatening or life altering as ALS, I feel this connection to you as you poetically pen your admiration for this amazing person in your life who, as you say, cannot begin to be defined by three letters. God be with you both as you journey this path and I thank you immensely for bearing your heart and soul to all of us on the outside looking in. Praying for you, Bo and Steve.
Bo, I’ve pinned this to my pinterest board of blogs that make a difference… your eloquence, your story, your husbands amazing living testimony… such an inspiration and encouragement! I’ll be lifting you and your family in prayer, moment to moment strength be supplied unto you through the One who is Hope incarnate. Thank you for your wonderful posts. Lord bless.
Home News Latest The face of ALS: Hidden Valley Lake man’s family studied to understand devastating disease
The face of ALS: Hidden Valley Lake man’s family studied to understand devastating disease
SUNDAY, 14 SEPTEMBER 2014 00:25 JOHN LINDBLOM
Charlie and Donna Breidenfield of Hidden Valley Lake, Calif., with their poodle, Sophie. The Breidenfields have faced the devastation of amyotrophic lateral sclerosis – known more commonly as Lou Gehrig’s disease – for years, as it has stricken many members of his family. He’s now battling the disease. Photo by John Lindblom/Lake County News.
HIDDEN VALLEY LAKE, Calif. – It was 3 in the morning on a Pennsylvania highway when Charlie Breidenfield saw the flashing red light in his rear view mirror.
So he eased up on the accelerator and backed off the Ferrari’s speed by 40 miles per hour to 100 miles per hour.
Then he stopped and engaged the state police officer in a chat about the virtues of the car before receiving a ticket.
Breidenfield had lead-footed exotic European cars at such speeds before because (1) he wanted to test-drive them before he and his younger brother Bill, who were partners in a business, sold them and (2) he didn’t give a damn.
Why should he? Sometime in the future he knew that he would succumb to a condition in which he could not speak, swallow or even breathe.
“I had no fear. That’s why I drove like a lunatic,” Breidenfield said. “I’d do anything. I tried everything, just raised hell. I never worried about tomorrow because I figured sooner or later I’m going to get Lou Gehrig’s disease.”
This was a more-than-reasonable assumption for Breidenfield. As certain as sundown.
That is the cold reality for Lou Gehrig’s disease – amyotrophic lateral sclerosis, or ALS – which currently is the beneficiary of a fundraising program sweeping the nation that involves pouring a bucket of ice and water over someone’s head.
A study released earlier this year by the Centers for Disease Control and Prevention estimated that, while deadly, Lou Gehrig’s disease still remains rare in the general population. For the period from Oct. 19, 2010, to Dec. 31, 2011, there were approximately 12,187 people in the United States identified by the National ALS Registry as has having the disease.
However, for Breidenfield and his family, the disease has appeared with frightening frequency.
The reality for Breidenfield and his family is a chart created in 1993 to track its genealogy and deaths resulting from the ALS that Breidenfield and the rest of his family have come to know as “the family disease.” For a good and substantial reason.
“The people’s names in black are the ones in our family who died from it,” said Breidenfield as he unfolds his chart. “There are 111 that we know of.”
Or, about one out of every three names on the chart.
Generations on the chart, Breidenfield said, date back to the 1860s when his great-great-grandmother, Anna Herman, came to America from Berlin and married into a family named Reich.
It is believed that Anna Herman Reich introduced the condition – then known as Charcot’s disease– to the first American generation of Breidenfield’s ancestors.
“Doctors will say it’s 50-50 (fatal), but doctors are lousy on odds. The majority that I found – like in my father’s generation – died from it,” said Breidenfield. “During my grandfather’s generation there was only one who didn’t die from it.”
Devastating a family
For the past half-century ALS has been called “Lou Gehrig’s disease,” named for Babe Ruth’s iron-man teammate who was an ALS victim in 1941, two years after he played his final game for the New York Yankees.
In Europe ALS is still known as Charcot disease, named for the pioneering and preeminent 19th century French neurologist Jean-Martin Charcot.
By whatever name, it is caused by a dominant – and for the most part dooming – gene, a genetic time bomb that makes people prisoners in their own bodies and kills them in as little as two years.
“You only need one person with a gene mutation to spread it to the next generation,” said Breidenfield.
For that reason, he and Donna, his wife of 24 years, elected not to have children. The two have lived in California – most recently in Hidden Valley Lake – for the past 11 years after coming here from Michigan.
Within the past couple of years, Breidenfield learned of another branch of the family that he hadn’t realized existed when a cousin called him from Long Island.
She told Breidenfield she was in a wheelchair and a half-dozen members of her branch of the family, including her mother, died from Lou Gehrig’s disease.
Then another cousin – this one living just outside Philadelphia – contacted him to tell him about six of his relatives who were Lou Gehrig’s disease victims.
In his immediate family, Breidenfield lost older and younger brothers and his father to ALS. His grandfather died as a result of the disease at age 46, his father was 67 when he died.
Charlie Breidenfield’s older brother John would succumb to the disease at age 64. His younger brother Bill, an aspiring actor, was on a ventilator for 12 years before dying at age 42. Bill’s death and the death of their father, John, were separated only by a few weeks. Both died literally in Charlie Breidenfield’s arms.
Back up a few years to the top of the stairs in the Breidenfield family home in Michigan where Charlie Breidenfield, not 5 five years old, and his brother, John, older by two years, sat and for the first time learned about the debilitating neurological disorder that would take on such importance in their lives.
At the time, 1954, they were listening to their father in a long-distance, late-night phone call with one of their favorite aunts, talking about how another aunt, then suffering from Lou Gehrig’s disease, would not make it through the summer.
“I was devastated,” Breidenfield said.
Charlie Breidenfield of Hidden Valley Lake, Calif., displays a family chart that shows the more than 100 members of his family who have had amyotrophic lateral sclerosis, or Lou Gehrig’s disease. Photo by John Lindblom/Lake County News.
Groundbreaking research
The most incredible part of Breidenfield’s story is that medical researchers have traced the ALS gene mutation he carries – a marker on the Y chromosome – back through 93 generations. That’s 2,000 years on the Common Era calendar.
The worldwide study has established that Breidenfield is a member of the third largest family in which the ALS gene – known scientifically as G93A-SOD1 – has been a dominant factor.
It recently was estimated that the A4V mutation occurred 540 generations – or 12,000 years – ago. Researchers conclude that the mutation was carried by the Asian ancestors of American Indians who reached the Americas via the Bering Strait land bridge.
Even so, ALS is not primarily a familial disease. Researchers say 90 percent of the mortalities caused by the gene are sporadic.
Breidenfield has spent interminable hours and funds in his effort to combat and survive with ALS.
Twice a month he makes contact with neurologist Dr. Teepu Siddique of Northwestern University, who along with Dr. Robert Brown of Harvard discovered the first ALS mutant gene more than 20 years ago.
The major news media – including Tom Brokaw of NBC and CNN – heralded Siddique’s discovery, which Siddique said at the time “is the first time we’ve found a cause and identified what may lead to a to a treatment.”
With a treatment of choice still to be found, Breidenfield has adopted his own system of medication. Every hour on the hour he consumes a variation of compounds that presumably have warded off the disease.
“I’ve come a long distance from where I was,” he said. “Late in 2011 and early 2012 I was in a whole lot of pain. My brother John, who didn’t come back from it, was pretty sure that I was on the same road as he was.”
His brother John died at age 64. Charlie Breidenfield’s 65th birthday is in November.
“We got to the point where we were almost identical in what was happening to us,” Breidenfield said. “He had lost 18 pounds of muscle off his legs and was using a cane and I knew I was real close to needing a cane or not walking.”
Tragic as his brother’s death was, Breidenfield was motivated by it.
“It drove me like mad,” said Breidenfield. “After dinner I would sit down and stay on a computer until I blacked out. Now, I feel blessed that I can do as much as I can.”
In the time since his older brother’s death, Breidenfield has busied himself in an interminable search for medicines that can aid a Lou Gehrig’s victim. He also attempts to contact other victims.
He estimates he has tried or reviewed more than 100 compounds with mixed results. He has written to hundreds of other ALS victims including Hall of Fame and former Oakland A’s pitcher Jim (“Catfish”) Hunter who died, a victim of ALS, in 1999.
Most likely because Breidenfield is not a doctor, indeed not even a licensed practitioner, hardly anyone takes him serious in his effort to share information.
“Nobody responds,” he said sadly, “They’ll just say ‘who the hell’s Charlie Breidenfield?’ Until you see the clip from Tom Brokaw you‘d think I was just another bull—–er like you find on the next bar stool.”
He estimates he’s sent out hundreds of unanswered letters to ALS victims. Some of the victims, he believes, cling to the hope that, “If I change my name it will all go away.”
Universities and drug companies react in a entirely different way to Breidenfield’s calls.
“When I call them and identify myself they know right away they’re talking to someone who knows what’s going on,” he said.
Breidenfield, along with his sister Pam, has also spent countless hours tracing his ancestry.
“I don’t know how many times I’ve gone through the family graveyard in Philadelphia,” he said. “I also went to a 200-year-old funeral parlor to find some family members and I’ve spent a lot of time digging up dead bodies – not really digging them up, but finding paperwork regarding relatives who died from Lou Gehrig’s disease.”
Donna Breidenfield has had to watch her husband struggle with the effects of ALS and gamely wage his battle against it.
“He’ll have very good days and very bad days,” she said. “The trouble is when I see him having a bad day I feel I can‘t control anything. I’m just helpless at that point.
“It can be very stressful,” she continued. “Two years ago there was a point where he couldn’t get in or out of the car, he was dropping a lot of things, tripping over things, didn’t do much and had no energy.”
In terms of the battle to find a cure for Lou Gehrig’s disease, Charlie Breidenfield is indeed somebody.
“I asked Dr. Teepu a year ago how many (ALS-) involved family members talk to him like I do. Turns out I’m the only (ALS victim) who works with him and talks with him about what he’s found,” Breidenfield said.
A moment after Breidenfield said that the phone at his Hidden Valley Lake home rang. It was Siddique returning a call.
“How important was my family in finding the gene mutation?” Breidenfield asked him.
“It was very important,” Siddique replied.
Email John Lindblom at jlwordsmith@mchsi.com .
or Charlie Breidenfield at cd4harris@aol.com
Okay…I’m a few days late to this one but I LOVE hearing those eight words Steve spoke to you. They’re adorable and as you said, so dialed in to you. Thanks again Bo for letting us into the world that you and Steve share in this sacred season. Much love
Bo- When I read your messages it seems as though we are experiencing the same journey– just on opposite sides of our country. My husband Doug and I are battling the 3 ugly letters, ALS as well. And when ‘we’ finish our shave, shower, groom, and dress, I feel like Doug has had the DELUXE WASH at the car wash and I am certain I have earned a medal. His smile melts my heart as tears stream down my face.
Doug is a daddy to three wonderful kids- and he was a pilot and also an avid golfer. He offers much love, wisdom and kindness to many of his military buddies and friends across the globe. I see in his eyes the love for our children and for me, and though his speech is hard to understand he never fails to tell me how much he appreciates all that is done for him. There is not doubt that he loves me. His greatest wish in life is to love and cherish his family. That one thing ALS can’t take away.
I’m touched by your words- please know I will pray for our Lord and Savior to have Mercy upon our men.
Harriet
Steve and I became friends in elementary school, and enjoyed playing tennis and basketball together well into our college years. Then he went west, I stayed Midwest and our lives evolved.
Fortunately GOD had plans to make sure we circled back, and we did, playing golf when he would visit Florida for work. I remember our conversations before and after his diagnosis, and the profound calm he had about himself and his relationship with Bo, the kids and GOD.
I’ve been blessed to spend intimate, quality time with Steve and his family and can’t imagine an example of a more loving, compassionate relationship than what he has with Bo, his family and with GOD.
Bo’s illustration of what it is like to get Steve in and out of the shower is a perfect example of one of the questions I ask people who are considering getting married.
“Can you imagine you for him, or him for you – feeding, bathing, clothing the other?” I remind people that this “service” to one another may not come in the 70, 80+ years of our lives together…as exemplified by Bo & Steve….it can come when you least and most desperately don’t expect it.
I’m on the other side of the United States from my friend Steve and his family, but there isn’t a day that goes by that I don’t include them in my prayers and “Thank” GOD for them.
Love you Bro! Bob
Steve & Bo,
Your hearts for each other have always been an inspiration to us and many we know. Though we do not see all…. We do see the Love you both have for each other and the Love of God that shows through you. Yes, our life here is always to short, but the blessings we have shared with others, and the blessings from you that make others strong are a growth that we will only see when we meet our maker. Keep Strong in the journey, Hold on to small treasures you get each day, Cherish the wisdom that is sent to your heart, and know All Our Prayers Are with you, and We are Blessed for your hearts!!
We Love You
Melony & Dusty
Wow…this post was like reading a day in my life. Like looking at a movie of my life. But looking at if from the outside reminded me of how I feel about my own husband and how all those positive thoughts and feelings are there but they get masked by the obligations and day in and day out work. Sometimes it’s just survival mode. Thank you for helping me today to lift up that mask and see what’s really important underneath it. My loving, amazing husband Fred.