In 2004, my father died of ALS. This weekend, we have organized a team to participate in the Walk to Defeat ALS in San Antonio, TX. We would appreciate your support. To that end, I would like to tell you more about my dad and my experience of his disease. (My counselor bias - since we can only ever truly share our own experiences, that's the best I can give you. I will say that my experience was so tiny compared to the experience of my mother, who was his day-to-day caregiver and constant companion, and all those who are caregivers for loved ones with ALS.) It was a heartbreaking time for us, but I'm not sharing this for sympathy. I'm sharing this to inform and motivate.
I know this is a long post. If you want to skip all of my rambling and just donate to the cause, that's cool with me. Here's a link to our team's page. Just pick a person on our team, click on the "donate now" button & have at it! Thank you!! ♥
Here's some information about ALS to answer questions I've heard from several friends. The information is taken from the
ALS Association's website.
- What is ALS?
Amyotrophic lateral sclerosis (ALS), more commonly referred to as Lou Gehrig’s disease, is a progressive neurodegenerative disease that attacks nerve cells and pathways in the brain and spinal cord. When these cells die, voluntary muscle control and movement dies with them. Patients in the later stages of the disease are totally paralyzed, yet in most cases, their minds remain sharp and alert.
- Who is affected by ALS?
Every day, an average of 15 people are newly diagnosed with ALS — more than 5,600 people per year. As many as 30,000 Americans may currently be affected by ALS. Annually, ALS is responsible for two deaths per 100,000 people. ALS occurs throughout the world with no racial, ethnic, or socioeconomic boundaries. ALS can strike anyone. Every single American is threatened by this disease.
- How does ALS progress?
The average life expectancy of a person with ALS is two to five years from time of diagnosis. With recent advances in research and improved medical care, many patients are living longer, more productive lives. Half of all those affected live at least three years or more after diagnosis. About 20 percent live five years or more, and up to ten percent will survive more than ten years.
My dad first showed symptoms of ALS in the fall of 1999. We were all home for Thanksgiving and decided to go bowling. Family fun, right? My dad was up for his turn and when he tried to roll his ball down the lane, he had sudden weakness in his leg and stumbled. At the time, it just seemed like a weird thing that we shrugged off. Over the course of the next year, he continued to have odd symptoms here and there, but nothing that stood out as a red flag for a serious illness. He began having more trouble with his balance and a lack of strength in his legs. He had trouble pushing off from his foot when he was running. Yes, he still ran almost every day. At my youngest brother's graduation from Infantry School, Pop & I were walking up the bleachers when his leg gave out and he fell into a group of people. That was really the first time it resonated with me that something was wrong.
My whole life, Pop was so healthy. I think he recognized the challenges of being an older father (he was 50 when my youngest brothers were born) and worked hard to take good care of himself. I remember always feeling scared if Pop stayed home sick from work because it almost never happened. It was such a shock to realize that for the first time in my life, Pop was starting to seem his age. The next couple of years were filled with tests & uncertainty. ALS was an early question in our minds, since his sister died of the disease when Pop was young. At the time, most docs believed there was no familial connection in ALS, so they kept looking for other things. They thought it might be a spine problem, then discovered he had prostate cancer. After a detour to treat the cancer, it became clearer that he really did have ALS.
His diagnosis was a low point for me. I was so, so angry at God. My dad was living with his sister & her family in CA when she died and he watched her slowly deteriorate and then leave behind 3 small children. It was devastating to have such a clear image of the road ahead of him. As time passed, he had greater difficulty walking. By the time my oldest little brother :) got married in Dec. 2002, he was walking with a cane... but he was still walking. The picture on our team page is from their wedding.
I got engaged about 5 months after this picture was taken. About 9 months after this photo, I went home to visit my dad for what I figured would be the last time at our house. His condition was rapidly deteriorating and it was so hard, yet a twisted blessing, to be far away. I feel horribly guilty about it, but I am so thankful not to have been able to witness my dad's illness in its day-to-day form. I tried to call home as often as I could, but it got more and more frustrating. Pop had increasing difficulty speaking & it became really hard to understand him over the phone. Our conversations got shorter & shorter. I kept thinking that if I could just get home for a visit, we would be able to talk better in person. I was working full-time, in grad school full-time, & Ian was entering the 3rd year of his residency training program. Planning a wedding on top of that made it hard to find time (& money) to take a trip home. I finally made it home late that summer; by then, my dad could hardly talk. On top of that, would you believe I got laryngitis the week I was there?? So, we spent a fair bit of time holding hands and just looking at each other. We both had so many things we wanted to say and were so frustrated that we couldn't.
One thing we were able to "discuss" was who would walk me down the aisle at my wedding. He could only take a couple of steps with a lot of support by this point and knew he would not be walking at all by the time the wedding rolled around. I told him I would love to go down the aisle with him any way he could... I could push his wheelchair or we could have an usher push him and I would walk beside him. Whatever. He was insistent that it was my day and he would not do anything to distract attention from me. He wanted me to walk down the aisle with my brother, Joe. Did I mention he was insistent? He could be quite stubborn when his mind was made up about something. A trait I am sure he did not pass on to any of his children. Ahem...
Ian & I originally planned to get married in Chicago, since that's where we were living at the time. We made plans, put down deposits, & looked forward to getting married in April of 2004. In January 2004 - just 13 months after my brother's wedding - we decided we needed to move the wedding to St. Louis because there was no way my dad could travel all the way to Chicago.
The next few months were a flurry of canceling and making new wedding plans, grad school, work, and worrying. My youngest brother was deployed to Iraq, but scheduled to come home right around the time of our wedding. I wrote letters to any government official I could think of begging them to let my brother come home in time for the wedding, since it was becoming clear that it would be the last chance for our whole family to be together. Unfortunately, it didn't work and the next time I saw my baby brother was when we came home for my dad's funeral.
I got married 16 months after my brother. Even with moving the wedding to St. Louis, my dad still almost didn't make it. To this day, I cringe when I think of how self-absorbed I was that weekend. I know I was a crazy bride & it was my wedding weekend, blah, blah, but I would give so much to be able to have a do-over. The day of the wedding, while I was scrambling around with hair appointments & dresses, my dad was
not well. According to my family, they really were torn about whether they should take my dad to the wedding or to the hospital. When it finally seemed like the hospital was where they were headed, he suddenly sat up and said that he needed to get dressed. The fact that he there for my wedding day was 100% willpower. (Did I mention how stubborn he could be?) By this point, he needed oxygen most of the time, but he had decided he would not have a ventilator. He couldn't eat solid foods because he had so much difficulty swallowing. His hands were so soft, smooth, & shiny because of the way his muscles had deteriorated.
I walked down the aisle with my brother and my dad met us at the end. The intense look of concentration and determination on his face as he placed my hand in Ian's is something I will never forget. Everything was so crazy after the wedding that I didn't really get to say much to him after we finished all of the family pictures. I figured I could talk to him at the reception. We'd planned that I would split the father-daughter dance time with my brothers, Joe & Dave, but I hoped we could at least wheel my dad onto the dance floor or something. My parents and sister weren't able to make it to the reception. The wedding took all my dad had to give. That quick moment after the wedding was the last time I saw my dad. My youngest brother called in the middle of the reception to say that he'd made it home from Iraq.
I talked to my dad briefly on the phone when we were at the airport on the way to our honeymoon. I was able to tell him how very much I loved him and how happy I was that he'd been able to be at the wedding. He said the same. And that was the last time I spoke to him. He died the day after we returned from our honeymoon.
Like I said, my experience is so insignificant compared to the burden my mom carried. I lived out-of-state and was so absorbed in my own life that days could pass without much focused thought about Pop. My mom (who is not exactly a beacon of health herself) was the one constantly by his side, lifting him out of bed, helping him to the bathroom, giving him suction when he wasn't able to clear his throat, loading him & his wheelchair into the van, etc., etc...
It was devastating to lose the person who was probably the biggest inspiration in my life. I was a comparative religions major because of him; I became a counselor because of him; I married a kind, gentle, steady, faithful man because of him. I have clear memories of feeling just gutted over the loss at times that took me by surprise... after getting back a counseling theories paper in grad school that I would have loved to have told him all about, at Christmas Eve Mass as we were singing "Oh, Come All Ye Faithful" and for a second I could hear his loud tenor belting out his favorite Christmas song; at Izzie's Baptism when I thought of how delighted he would be in his sweet, little granddaughter...
Even though my dad was a uniquely amazing person, there are
thousands of families currently living out their own versions of this story. We are doing this walk to honor my dad, but we really are doing it for them. The slogan
"Walk Because You Can" is about as straightforward as it gets. ALS takes away the ability to walk along with so many other things. I try to remember this and to be grateful for all those little things I can do every day. So, on behalf of all those people currently carrying the burdens of life with ALS, I am asking you to look at all of the things you and your loved ones CAN DO every day and to be grateful for them. And, of course, I would be so grateful to
you if you would channel your own gratitude to make a
financial contribution to our efforts to help other ALS families.
