Sorry y'all, it's been a really long time. I have thought about writing some pointless stories, but haven't gotten around to it--I'm pretty busy living them out in daily life. But I recently attended a fundraising kickoff for the ALS Association's Walk to Defeat ALS. And that's how I ended up here, writing a pointless story for you. Except this one kinda has a point - it just takes extra long to get there.
Eleven years ago I got married. I was thrilled that both of my living grandparents were able to attend: my mom's mom, Leila, and my dad's dad, Fred. Not long before my wedding, I talked to my grandma a couple of times on the phone. Something seemed strange about the way she was talking, as if she was having a hard time making her words come out.
By the time she came out to Arizona for my wedding in June, she had also been having some issues with one of her legs. I can't remember if she thought the problem was her knee or her ankle, but something was going on.
I traveled to Indiana two months later to attend my cousin's wedding. Since my new husband wasn't able to make it, I had the opportunity to stick to Grandma like she was my date. Her symptoms seemed to be a little worse, and I remember trying to help her through the buffet line and getting up to get things for her, like a piece of wedding cake. It was kind of baffling what could be causing these issues, but I never could have imagined the truth.
On December 30, 2002, she received a diagnosis. Amyotrophic Lateral Sclerosis, or ALS, also known as Lou Gehrig's Disease. I had heard of Lou Gehrig's Disease, but I had no inkling what it actually was. Oh, how I wish I never knew, how I wish it never existed, how I wish it was curable - or even treatable.
In the days that followed, I learned what ALS was all about from the ALS Association website. It's a motor neuron disease that basically leads to paralysis and death - usually when muscles used for breathing are unable to work any longer. The kicker is that the mind is unaffected, meaning the person with ALS is completely aware of what is happening to her body. There are two typical types of onset - one involves mobility and the other involves the mouth and speech. Grandma seemed to have both, but her speech was gone quickly. That made it even harder, as attempts to communicate became more difficult.
My mom could not bear the idea of sending Grandma to some nursing home or hospice to die. With no other reasonable alternatives, the decision was made to bring Grandma to Arizona to my parents' house. They made some modifications, including creating a new entrance to a room that became Grandma's bedroom, altering the bathroom according to recommendations from ALS Association, and dealing with the popcorn ceiling, which harbors dust and can become a breathing hazard. At first it was difficult because while Grandma loved to see her family, she didn't necessarily want to be here. After Grandpa died, she stayed on the farm in Indiana until her children practically forced her to move into town following an episode of severe sickness that happened when she was snowed in, alone. Now, she wasn't even permitted to finish her life in her own home, her town, her state, or even her region of the country.
We could appreciate that this was not what she wanted, and we had no choice but to support her decisions to establish a DNR, to refuse a feeding tube, and to refuse a ventilator. Unlike many people with ALS that I have met or heard about, Grandma did not want to fight. She learned what this disease would do to her and wanted it to be over with as soon as possible. Maybe she just longed to see Grandpa again, and her mom, and others who had gone to heaven before her.
I believe without a doubt that her unwillingness to fight contributed to the speed at which her ALS progressed. I was a newlywed, working full time, and attending evening classes for my MBA. Once she arrived in Arizona, it was already February. I regret not finding more time to visit with her. They said that the average person with ALS lives 2-5 years after diagnosis. I really thought I had more time. We made plans to participate in the ALS Association's big fundraiser, which was called Walk to D'feet ALS. (It is now the Walk to Defeat ALS.) The Walk was scheduled for the fall.
In the month or two before Grandma passed away, my mom's siblings came to visit her. It was a hard time. Mom had to hire a 24 hour nurse, who slept on their couch. Grandma wasn't able to speak, and was losing the ability to swallow, too. It had been some time since she was able to walk, and other simple abilities, like sitting and using her arms, were disappearing. She had the look of someone who was suffering.
That July I had signed up for a summer elective course that was going to be all day Friday and Saturday, for two weeks. Mom was preparing to go to the NOMOTC Convention in Albuquerque (National Organization of Mothers of Twins Clubs, Inc.) and Dad was going to drive her there. They were leaving Saturday morning, 7/19/2003. The Wednesday before, a bunch of us got together at their house to see Grandma. Things were not looking good and my mom pulled me aside to give me instructions on the off chance that Grandma passed away while they were out of town. The doctor thought she would last another few weeks, but we weren't sure what to think.
We had a good visit although it was hard for me. For all of us, I'm sure. I don't even remember who was there. I had decided to make a present for Grandma - her birthday was coming up next month. I had bought a wooden 8x10 picture frame, some pink rose paper, pink ribbon, and cardstock. I used a calligraphy style marker and wrote as neatly as I could: "Grandma, You are so loved." When I finished putting the materials together in the frame, it was done prior to that Wednesday. I couldn't explain why I felt a nudge to bring it that night to give it to her early - not to wait for her birthday. I'm so glad I listened to that feeling.
When I gave it to her, I told her I made her a present and didn't want to wait for her birthday - this way she could have it now and look at it whenever she wanted. I positioned it so she could see it and I read it out loud to her. She was completely immobile by then save for her eyes. She looked at it and she looked at me. Her facial muscles were stuck in the same expression, so I didn't have any nonverbal cues to figure out what she was thinking or what she might have wanted to say to me. I wanted to know if she liked it, if she understood what it meant from me, if she knew there were many people who loved her and were unable to express that love to her to its real depth. That she was important, and her life mattered!
All I had were her two eyes, looking at it, looking at me. She gave me a long look. One I took to be the fierce attempt to tell me she loved me and my gift meant the world to her. And almost immediately I doubted what I thought I saw, doubted myself, inwardly chastised myself for inventing this because it's what I wanted it to be.
I tried to stay close to her during that evening. Sometimes I put my hand on hers, and tried not to feel awkward because I wanted to hold her hand but wasn't sure if it would be uncomfortable for her - what pains she was feeling in those dying parts of her body. I just couldn't believe how fast we had come to this point, where she was barely living and we all wanted to hold on to her. I told her I was going to have my class on Saturday and promised to come see her as soon as it was over.
Saturday morning, I was sitting in that class. Mom and Dad had left for Albuquerque. My sister had left for work. The only souls in the house belonged to Grandma, my sister's dog Wrigley, and Grandma's nurse. After her family had left the house, Grandma decided she wanted to go to a birthday party. A heavenly birthday party for her husband, my Grandpa, who had died in 1996. July 19 was his birthday.
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In November 2022 I will Walk to Defeat ALS for a 20th time in memory of my dear grandma. Now, it's worse - now, I have known of more people who have had ALS, more people who have also died fighting ALS, even some my age. ALS is still considered one of the rare and orphan diseases, but it's more common than you think. Those fighting ALS and caring for those living with ALS need my help and yours. There is no way to know if another person I love, or even myself, will be next.
And that brings me to the reason for this story. At the fundraising kickoff for the Walk to Defeat ALS, I learned that the walk makes up about 2/3 of the annual budget for the Arizona Chapter of the ALS Association. The AZ ALSA provides durable medical equipment to people with ALS (PALS), it provides services to PALS and their caregivers, and ALSA funds work to find treatment and a cure. Please join the fight if you are able.
My page:
Scottsdale Walk: 20 Years for Leila - Walk to Defeat ALS®
Thanks for reading my story. Thanks for your prayers and words of support. Thanks for your monetary donations to the ALS Association. That support for ALSA is the point.
Eleven years ago I got married. I was thrilled that both of my living grandparents were able to attend: my mom's mom, Leila, and my dad's dad, Fred. Not long before my wedding, I talked to my grandma a couple of times on the phone. Something seemed strange about the way she was talking, as if she was having a hard time making her words come out.
By the time she came out to Arizona for my wedding in June, she had also been having some issues with one of her legs. I can't remember if she thought the problem was her knee or her ankle, but something was going on.
I traveled to Indiana two months later to attend my cousin's wedding. Since my new husband wasn't able to make it, I had the opportunity to stick to Grandma like she was my date. Her symptoms seemed to be a little worse, and I remember trying to help her through the buffet line and getting up to get things for her, like a piece of wedding cake. It was kind of baffling what could be causing these issues, but I never could have imagined the truth.
On December 30, 2002, she received a diagnosis. Amyotrophic Lateral Sclerosis, or ALS, also known as Lou Gehrig's Disease. I had heard of Lou Gehrig's Disease, but I had no inkling what it actually was. Oh, how I wish I never knew, how I wish it never existed, how I wish it was curable - or even treatable.
In the days that followed, I learned what ALS was all about from the ALS Association website. It's a motor neuron disease that basically leads to paralysis and death - usually when muscles used for breathing are unable to work any longer. The kicker is that the mind is unaffected, meaning the person with ALS is completely aware of what is happening to her body. There are two typical types of onset - one involves mobility and the other involves the mouth and speech. Grandma seemed to have both, but her speech was gone quickly. That made it even harder, as attempts to communicate became more difficult.
My mom could not bear the idea of sending Grandma to some nursing home or hospice to die. With no other reasonable alternatives, the decision was made to bring Grandma to Arizona to my parents' house. They made some modifications, including creating a new entrance to a room that became Grandma's bedroom, altering the bathroom according to recommendations from ALS Association, and dealing with the popcorn ceiling, which harbors dust and can become a breathing hazard. At first it was difficult because while Grandma loved to see her family, she didn't necessarily want to be here. After Grandpa died, she stayed on the farm in Indiana until her children practically forced her to move into town following an episode of severe sickness that happened when she was snowed in, alone. Now, she wasn't even permitted to finish her life in her own home, her town, her state, or even her region of the country.
We could appreciate that this was not what she wanted, and we had no choice but to support her decisions to establish a DNR, to refuse a feeding tube, and to refuse a ventilator. Unlike many people with ALS that I have met or heard about, Grandma did not want to fight. She learned what this disease would do to her and wanted it to be over with as soon as possible. Maybe she just longed to see Grandpa again, and her mom, and others who had gone to heaven before her.
I believe without a doubt that her unwillingness to fight contributed to the speed at which her ALS progressed. I was a newlywed, working full time, and attending evening classes for my MBA. Once she arrived in Arizona, it was already February. I regret not finding more time to visit with her. They said that the average person with ALS lives 2-5 years after diagnosis. I really thought I had more time. We made plans to participate in the ALS Association's big fundraiser, which was called Walk to D'feet ALS. (It is now the Walk to Defeat ALS.) The Walk was scheduled for the fall.
In the month or two before Grandma passed away, my mom's siblings came to visit her. It was a hard time. Mom had to hire a 24 hour nurse, who slept on their couch. Grandma wasn't able to speak, and was losing the ability to swallow, too. It had been some time since she was able to walk, and other simple abilities, like sitting and using her arms, were disappearing. She had the look of someone who was suffering.
That July I had signed up for a summer elective course that was going to be all day Friday and Saturday, for two weeks. Mom was preparing to go to the NOMOTC Convention in Albuquerque (National Organization of Mothers of Twins Clubs, Inc.) and Dad was going to drive her there. They were leaving Saturday morning, 7/19/2003. The Wednesday before, a bunch of us got together at their house to see Grandma. Things were not looking good and my mom pulled me aside to give me instructions on the off chance that Grandma passed away while they were out of town. The doctor thought she would last another few weeks, but we weren't sure what to think.
We had a good visit although it was hard for me. For all of us, I'm sure. I don't even remember who was there. I had decided to make a present for Grandma - her birthday was coming up next month. I had bought a wooden 8x10 picture frame, some pink rose paper, pink ribbon, and cardstock. I used a calligraphy style marker and wrote as neatly as I could: "Grandma, You are so loved." When I finished putting the materials together in the frame, it was done prior to that Wednesday. I couldn't explain why I felt a nudge to bring it that night to give it to her early - not to wait for her birthday. I'm so glad I listened to that feeling.
When I gave it to her, I told her I made her a present and didn't want to wait for her birthday - this way she could have it now and look at it whenever she wanted. I positioned it so she could see it and I read it out loud to her. She was completely immobile by then save for her eyes. She looked at it and she looked at me. Her facial muscles were stuck in the same expression, so I didn't have any nonverbal cues to figure out what she was thinking or what she might have wanted to say to me. I wanted to know if she liked it, if she understood what it meant from me, if she knew there were many people who loved her and were unable to express that love to her to its real depth. That she was important, and her life mattered!
All I had were her two eyes, looking at it, looking at me. She gave me a long look. One I took to be the fierce attempt to tell me she loved me and my gift meant the world to her. And almost immediately I doubted what I thought I saw, doubted myself, inwardly chastised myself for inventing this because it's what I wanted it to be.
I tried to stay close to her during that evening. Sometimes I put my hand on hers, and tried not to feel awkward because I wanted to hold her hand but wasn't sure if it would be uncomfortable for her - what pains she was feeling in those dying parts of her body. I just couldn't believe how fast we had come to this point, where she was barely living and we all wanted to hold on to her. I told her I was going to have my class on Saturday and promised to come see her as soon as it was over.
Saturday morning, I was sitting in that class. Mom and Dad had left for Albuquerque. My sister had left for work. The only souls in the house belonged to Grandma, my sister's dog Wrigley, and Grandma's nurse. After her family had left the house, Grandma decided she wanted to go to a birthday party. A heavenly birthday party for her husband, my Grandpa, who had died in 1996. July 19 was his birthday.
~* ~* ~* ~* ~* ~* ~* ~* ~* ~*
In November 2022 I will Walk to Defeat ALS for a 20th time in memory of my dear grandma. Now, it's worse - now, I have known of more people who have had ALS, more people who have also died fighting ALS, even some my age. ALS is still considered one of the rare and orphan diseases, but it's more common than you think. Those fighting ALS and caring for those living with ALS need my help and yours. There is no way to know if another person I love, or even myself, will be next.
And that brings me to the reason for this story. At the fundraising kickoff for the Walk to Defeat ALS, I learned that the walk makes up about 2/3 of the annual budget for the Arizona Chapter of the ALS Association. The AZ ALSA provides durable medical equipment to people with ALS (PALS), it provides services to PALS and their caregivers, and ALSA funds work to find treatment and a cure. Please join the fight if you are able.
My page:
Scottsdale Walk: 20 Years for Leila - Walk to Defeat ALS®
Thanks for reading my story. Thanks for your prayers and words of support. Thanks for your monetary donations to the ALS Association. That support for ALSA is the point.
Love,
Wendy
Thanks for sharing your beautiful story, Wendy!! I'm touched by your dedication and love for your grandma, and I know she is proud of you and all that you are and do, not just in this one aspect. What a blessing that you were able to have her close (physically) during that time. Love you xoxo
ReplyDeleteThanks Jen, I appreciate your support! xoxo
DeleteLove you, Wendy! Just read this again... Wanted to let you know I was thinking about you. xoxo
ReplyDeleteAnd again!! Love you, Wendy!! So proud to know you. xoxo
ReplyDelete