Families with ALS value every second of life

A few months ago, I wrote in this column, "The worst thing about ALS is knowing that if I die, I will leave my daughters behind. The best thing about ALS is knowing that they will be okay." On my blog and on Facebook I posted a picture of the two of them, now adults, hugging. One of the reasons I know they will be fine if I die is because they have each other. About a week later, I realized that I had been insensitive to my Facebook friends who are members of families that have ALS.

I was diagnosed with ALS (Lou Gehrig's disease) in February 2007. The disease has robbed me of my ability to walk, talk, eat, hug, and take care of myself. I live in a nursing home and spend all day in a power wheelchair.

Things could be worse. Things could be a lot worse. I could be waiting for and dreading the news that one or both of my daughters have been diagnosed with the same disease. About ten percent of ALS cases are called "familial" because they are inherited through family bloodlines. These families have the sad history of loved ones through the generations dying from ALS. They have the terrifying prospect of watching their children get ALS.

My type of ALS is called "sporadic" because it attacked me without any genealogical warning. My friend, Michelle Farr, is not so fortunate. Her husband's family has the mutated gene that causes ALS. Michelle writes, "The Farr Family has fought this disease for over 12 generations with at least 50% of each generation affected by the disease. We have lost count of the affected as the number grew too large over the last 400 years. This family understands all too well the devastation that this disease can cause families and many live in fear for their family members and wonder ‘who is next’ on a daily basis."




Michelle Farr, her husband, and their boys

 

Michelle and her husband have two cute blonde-headed boys in elementary school. The younger boy is mischievous and his older brother is more serious. They each have a 50-50 chance of getting ALS. Michelle writes, "We all work together to stay strong and support as best we can. We laugh every day and value every second of life."

Michelle has asked me to ask you to contribute to two organizations which work to find a cure for ALS: The Robert Packard Center at Johns Hopkins University (www.alscenter.org) and the ALS Therapy Development Institute (www.als.net).

Note: The day after this article was published in the newspaper, another member of the Farr family, Dennis Myrick, died of ALS.

(This article was first published in the Asheville NC Citizen-Times newspaper and is used here by permission.)

Is Lou Gehrig's Disease a Joke?

(This article was first published in the Asheville, NC Citizen-Times newspaper and is used here by permission.)

Movie scriptwriter Seth McFarlane thinks it is. Actor Mark Wahlberg thinks it is, too.

I am referring to a joke in the recently released movie, Ted. The Wahlberg character says, "I hope you get Lou Gehrig's disease." That's it. That's the joke: "I hope you get Lou Gehrig's disease." As of July 29th, the film had earned over 233 million dollars. A lot of people have laughed at this joke.

I don't think the joke is funny. I have suffered with Lou Gehrig's disease, also known as ALS, since I was diagnosed in early February 2007. The disease has taken from me my abilities to walk, talk, eat, or take care of myself. As a result, I can no longer work, drive a car, or live in my own home. ALS is a fatal illness. It will take my life unless a cure is found.

Of course, I would not think the joke was funny if it was about cancer, which my father survived, or heart disease, which killed him. I would not laugh if it was about Alzheimer's disease, which claimed my mother's mind and then her life. I would not be amused if the joke was about diabetes or rheumatoid arthritis or cystic fibrosis or Parkinson's disease or leukemia or any of the other diseases that plague the human race.

The ALS Association issued a statement describing the joke as "tasteless." The ALS Therapy Development Institute expressed "outrage." Eric Valor, a man with ALS, started a petition calling on McFarlane and Wahlberg to understand the "living hell that is Lou Gehrig's disease." They didn't think the joke was funny either.

Seth McFarlane issued a statement expressing compassion for ALS victims. He went on to defend the joke rather than apologize for it. He did not respond to requests to give money to ALS research, tour an ALS research facility, or meet people with ALS.

Maybe I should let it go. It is only a movie. Other movies are now box office leaders. There is some consolation that the words "Lou Gehrig's disease" are known well enough to be included in a movie.

But I can't give it up. It hits too close to home. It hurts people I care about.

Michelle Farr is beautiful in appearance and spirit. Her husband inherited a gene from his parents that gives him and their children a fifty-fifty chance of getting Lou Gehrig's disease. This happens in about ten percent of ALS cases. Michelle has done extensive research into her husband's family and found that over 400 members have died from the disease. She and her husband hope that their children will not get ALS. I met her through social media. Somehow she manages to smile in all her pictures.

I met a cute eight-year-old boy who has ALS. He smiles in all his pictures, too.

Lou Gehrig's disease is no laughing matter. Michelle and her children and the boy and his parents would agree.

I Love St. James Episcopal Church

(The following article was first published in the St. James Episcopal Church newsletter, The Epistle, and is used here by permission.)

I invited a friend to church recently. It wasn't hard. You should try it sometime.

She came to worship with me. I was able to look at our church anew through her eyes. This is what I saw:

* The Processional: We begin our worship when the cross is held high before us. It is an empty cross, a symbol of the resurrection of our Lord, so we know that our worship will be good news. The clergy do not lead the cross but follow it as we all do. The young people who carry the cross and the candles show that the young, the weak, and the dependent are valued among us.

* The Reading of Scripture: We value the Scriptures and believe that the Spirit speaks to us through them. We hear, read, and chant four readings from the Bible each Sunday. The Gospel is read within the congregation to show that Jesus came among us to love and save us. The words of Scripture shape our lives.

* The Preaching: We heard from Joel about the General Convention. He told us that the Episcopal Church is not perfect and that it needs to change. I am glad my friend heard this. The churches that claim to be perfect and need not change are useless. Or dangerous.

* The Nicene Creed: We recited an ancient creed that reminds us and tells others what we believe. We have received from our spiritual ancestors "the faith once delivered to the saints" and we will pass it on to our spiritual descendants.

* The Prayers of the People: We prayed for huge issues like justice and peace for the world, we prayed for individuals celebrating birthdays, and we prayed for most everything in-between. We prayed for the Church Universal and the church particular, St. James. We prayed for our president, governor, and mayor whether we liked them or not. We prayed for our clergy and the sick and the dead and those in the military who are in danger. You can learn a lot about what is important to people when you hear them pray.

* The Passing of the Peace: Then, and during the coffee hour, my friend was greeted warmly and received hugs from people who knew her. I did not have to tell her we are a loving church. We showed her.

* The Service of the Eucharist: We heard the great story of God's creation of the universe and ourselves, our falling away from God, and Jesus' ministry to restore our relationship with God. Then we ate the bread and drank the wine. My friend, although a baptized Christian, chose not to partake. She is always invited and always welcome.

* The Prayer Team: My friend joined me for prayer in the chapel at the end of the service. People who loved me gathered around my chair. They put their hands on my shoulders and arms, held my hands, and prayed for my healing with love and hope. I am glad my friend saw their loving prayers.

I do not think that my friend understood all that she saw when she worshipped with us. If she returns, we can begin to explain these things to her. I do know that we helped her. She told me so. The experience helped me, too, for it helped me love St. James Episcopal Church.

As I said, I invited a friend to church. You should try it sometime.

Of Diapers, Catheters, and Other Unmentionables

 (This article was first published in the Asheville, NC Citizen-Times newspaper and is used here by permission.)

I have tried to be honest and open in these articles but I have been holding out on you. Partly out of embarrassment and partly unsure how to write about it, I have not told you that I have been wearing a diaper for several months. Well, not the same diaper for several months. More like a series of diapers. See what I mean?

My illness, ALS (Lou Gehrig's disease), causes muscle weakness throughout my body. This includes the external urethral sphincter, a voluntary muscle which, when contracted, shuts off the flow of urine from the bladder. My sphincter became weak and I became like the little boy who jumped from one foot to the other, trying to "hold it," but with decreasing success. I became "incontinent of bladder." In other words, I wet my shorts and my pants and the cushion I was sitting on. It was time for a diaper.

By the way, and off the subject, I read somewhere that birds do not have sphincters. When they have to go, they go wherever they are. So if you are ever the recipient of an unwelcome gift from the sky, it is not an act of God or a bird that dislikes you. It is an accident and the bird so far as we know may be very sorry. Don't take it personally.

I started wearing a diaper several months ago. The staff at my nursing home wants me to call it a "brief," but I refuse. I know what a diaper looks like from changing my daughters' diapers years ago. My diapers are exactly like theirs, except that they are not small, pink, or have cartoon characters around the waistband. Besides, a brief is what a lawyer writes. There is a lawyer joke here somewhere regarding the contents of these two kinds of briefs. I will resist.

The diapers worked well for a while. Then the muscle weakened more. The staff had to change my diaper two or three times a day and this was after foot jumping for several minutes. A couple of weeks ago I gave in to the inevitable and requested a catheter and a bag to collect my urine. There are two kinds of catheters. A Foley catheter is a tube goes inside the body and can be a highway for urinary tract infections. I chose the option of a condom catheter that fits over me. The inside of the condom has an adhesive that holds it in place. Fortunately, it is not super glue. A tube starts at the condom, goes down my leg inside my pants, exits at the bottom of my pants leg, and goes into a bag to hold the urine.

Frankly, this new arrangement is great. No more trying to hold it while jumping from one foot to the other. No more multiple diaper changes in a day. I am free as a bird to pee whenever I want!

The Worst and Best Things about Having ALS.

(This article first appeared in the Asheville, NC Citizen-Times newspaper and is used here by permission.)

The worst thing about having ALS is not being able to tell people, "I love you."

The best thing about having ALS is hearing so many people say they love me.

The worst thing about having ALS is not being able to walk.

The best thing about having ALS is people who take me where I want to go.

The worst thing about having ALS is leaving my daughters behind if I die.

The best thing about having ALS is knowing they will be okay.*

The worst thing about having ALS is not being able to walk and talk.

The best thing about having ALS is the technology that takes me where I want to go and communicate when I get there.

The worst thing about having ALS is the friends who have drifted away.

The best thing about having ALS is the friends who have stayed.

The worst thing about having ALS was believing God was absent and knew nothing of my helplessness, my inability to move, and my struggles to breathe.

The best thing about having ALS is realizing that God is with me and knows exactly what it is like to be helpless, to be unable to move, and to struggle to breathe.

The worst thing about having ALS is believing I may die.

The best thing about having ALS is believing that if I die, the battle will be over and a new day will dawn.

The worst thing about having ALS was believing I was all alone with the disease.

The best thing about having ALS is learning that the many others touched by the disease and I can support each other.

The worst thing about having ALS is believing that if I die, my life will be over.

The best thing about having ALS is believing that if I die, my life will continue in a better place.

__________
*About 10% of ALS cases are genetically inherited. These families can name several members who have died from ALS and anxiously await the diagnosis of one or more of their children. They cannot say, as I do, that their daughters "will be okay." 

To Tell the Truth

(This article first appeared in Asheville, NC Citizen-Times newspaper and is used here by permission.)

 I have written a lot about the gifts I have received because I have ALS (Lou Gehrig's disease). I have a new appreciation for living in the present rather than regretting the past or worrying about the future. My friends and my church have given me a tremendous outpouring of love and support. My behavior and attitudes have come under a microscope and slowly but surely have improved. My daughters tell me that I am a better father. I pray more. My faith is stronger.

Words cannot adequately express my gratitude for the help I have received. Members of my church fed me, got me in and out of bed, and took me to worship when I was still living at home. I am grateful for the good care I get now that I am in a nursing home. The staff at the Carolinas Medical Center ALS Clinic have kept me alive and lightened the burden of the disease every way they can. The Jim "Catfish" Hunter (NC) Chapter of the ALS Association has encouraged me with personal visits, provided grants for in-home care and transportation to my Clinic, and been a voice of advocacy with lawmakers in Washington, D.C.

To be honest with you and myself, I must add one more thing. I hate ALS. I hate what it has stolen from me. I cannot walk, talk, eat, kiss, hug, or hold a hand. I do not have the strength to go to my older daughter's graduation from college or tell her I am proud of her except by typing it. My younger daughter, who lives nearby, has to visit me in a nursing home. I cannot kiss my daughters' cheeks, hold them in my arms, or tell them I love them.

I hate what ALS has done to my friends in the ALS community. Every week there is news of another brave soul who has lost his or her battle to this fatal and incurable illness. Left behind are grieving spouses and children, some of whom are quite young. It is the women, mostly, who stay in touch after their loved ones die, sharing their grief and attempts to move on with their lives. It makes for heartbreaking reading.

Hating something gives it power over oneself. Every moment spent hating is one less moment loving others and enjoying life. Hatred hurts the hater more than the hated. Hatred is not good for the soul, yet I find that I must express my hatred of ALS on occasion. They say, "Depression is anger turned inward." If I hold all my anger inside about ALS, I get depressed and sick. I know it is time to get angry when all my good humor and serenity in the face of this devastating disease begin to sound hollow to me. The good humor and serenity are true, thanks be to God, but they are not the whole story. I have tried to be truthful in these articles and I will continue to tell the truth as well as I can.

To tell the truth, I hate ALS.

The 2012 Charlotte Walk to Defeat ALS

We won the award for "Best Team Bandana."

The Swift Walkers team raised over $5500 for the Jim "Catfish" Hunter Chapter of the National ALS Association. Along with my daughter Emma's fundraising of $2000, we contributed $7500 for research, patient care, advocacy, and awareness of ALS (Lou Gehrig's disease). I want to thank the over 100 contributors who made this possible.

I have lived over five years with ALS!

Something over 2000 people participated in the Walk. The final numbers are not in, but at least $250,000 was raised by 120 Walk teams. It was a great event. See you next year!