As we begin building this army to help spread the awareness of Amyotrophic lateral sclerosis (ALS) through Tim LaFollette and the Often Awesome web series, I’d like to share my own personal experience with this awful disease. According to WebMD, ALS–also known as Lou Gehrig’s disease—“is a disease in which certain nerve cells in the brain and spinal cord slowly die.” In the past year, I learned all I know about ALS, but I wish I hadn’t.
My grandmother passed away last November as a victim of ALS—and it was one of the hardest things my family and I had to go through. I can’t even begin to imagine what she was going through during this struggle.
Rita Wagner, known from here on out as “Nonnie” (what we grandchildren called her), was diagnosed with ALS in early August 2010 with a supposed four to six months to live. After being diagnosed for only three months, she passed away on the morning of November 3.
Nonnie was a warrior in every sense of the word. Before her diagnosis, she had battled and beaten three different cancers: Lymphoma, lung cancer and colon cancer. She battled through the trials of lung cancer, where she only had a 15% chance of surviving. She was then diagnosed with colon cancer about a year before her ALS diagnosis. After that day, we can say she never really left the hospital.
Leading up to her fatal diagnosis, more and more problems arose with Nonnie, but no one had even considered the thought of ALS being the main cause of it all. She had a series of mini strokes; something the doctors suspected was a result of the colon cancer. Then her ability to walk greatly slowed. She and the doctors even contemplated a knee replacement before even testing her for ALS. The problems with her body piled up, though, and a doctor finally suspected ALS in late July.
Once the diagnosis came a few weeks later in August, the first ability she lost was walking. She was bed-ridden from the beginning. Her speech was the next to disappear. She went from slurring her words a bit in July to producing just sounds from her mouth.
During the time she was diagnosed up until her passing, my parents visited Nonnie up in Minnesota five times. Each visit held two purposes: spend the last possible moments with my father’s mother before she passes and to help out the rest of the family with any needs whatsoever.
She was fortunate to be near most of her family during the entire process, especially because my grandfather was years into his Alzheimer’s disease, and greatly affected him as well. (He ended up passing away three months after my grandmother did.) My dad’s extensive family all lives in the Minnesota/Midwest region. And his older brother’s (Carter) family lived just 15 minutes away from St. Mark’s Hospice Care, where she lived during her final months.
My two siblings and I joined them on one trip up north to Minnesota in September, and it was a jaw-dropping moment to say the least. Before going to St. Mark’s Hospice Care, where she was placed in August, we were briefed on the current situation Nonnie was in. She obviously wasn’t doing well, our parents told us.
But nothing can describe the pain and suffering I saw from her when we walked into her room. Now we knew she wasn’t doing well.
I had mixed emotions. I was happy to see Nonnie as it had been over a year since we last saw each other, but seeing her in the state she was in was truly gut wrenching. I just stood there beside her bed in awe. “How did this happen so quickly,” I thought. I also realized this would probably be the last time I would ever see my grandmother alive again. That’s one of the hardest things to do: say goodbye to someone you know will not be there next time. I tried to soak up all the memories I had with her and these final moments to take full advantage of her life. It was hard to do both at the same time, but I got the most out of my final interaction with Nonnie.
As I could see all over her body—both physically and mentally—the disease had completely taken control of her. She had an awful time eating; she would choke because the muscle mechanisms in her body just wouldn’t work anymore. They had completely stopped. It was sad to see, especially because you knew all she wanted was just to be able to eat and drink. Yes, to eat and drink! Two of the most basic functions the human body performs, and things we take for granted every day. Towards the tail end of her life, she would even choke on her own saliva as her swallowing mechanism had shut down.
Like I said earlier, speech was one of the first things the disease took from Nonnie. Her ability to talk to us quickly vanished. Her words became just one monotone sound; like a long grunt. The worst part may have been the fact she thought so much we could understand what she was saying. She couldn’t process the fact her speech was impaired.
To substitute for her lack of speech, my family gave her a magnet doodle board to write her thoughts and demands. For a while, it worked great. My family was able to understand her writing for the most part. Two of my fondest memories I have of her now involve her using that doodle board. In one instance, my family of five was huddled around her bed and loving her one afternoon. She proceeded to try to talk, insisting what we thought was an important demand. She seemed very urgent in getting her words out. After literally 15 minutes of trying to understand her needs and writing on her board, we finally discovered all she needed was the blinds to open so she could see the sun shining down. We all had a laugh once we opened the blinds, including Nonnie. Another instance was when she struggled to swallow water after a small snack. When the water wasn’t going down, she signaled over to me to grab something in the cupboard up above. I opened it, only to see a handle of premiere vodka and a glass next to it. I looked at her, trying to verify that’s what she wanted. When I did, all I could see was a large smile forming on her still beautiful-as-always face. When I poured that glass of straight vodka, I could tell she was back home. She was back home on a Friday night, hosting a party with friends and family. The thing she absolutely lived for. Those two final moments I had with Nonnie will, of course, live with me forever. In her trying times during past few months, she did what she could to restore her lively self. She did so with friends and family, as well as old habits.
(Well, I tried to write this post without tearing up, but I fell short of completing that goal. My laptop keypad is currently filled with drops of tears as I struggle to keep them inside. Thinking back to this time is very emotional and reminds me so much how hard this process really is.)
Soon after we returned back to Los Angeles, she even lost the ability to write on her board. Her hands became too curled up and inactive; just another part of the ALS process.
It’s been said ALS claims the life of each victim in two to three years, on average. Nonnie’s case was incredibly accelerated. As hard as it was to see it all happen so quickly, it turned out to be a major blessing for her and our family. She wasn’t happy where she was. She was frustrated nearly every second of her life, as nothing came easy anymore. As hard as it to say and realize, she was ready to go as quickly as God allowed her.
Nonnie was a sweetheart. She loved making people happy and loved hosting parties; she liked being the center of attention. Although she was certainly the center of attention her entire life, this was obviously one case she could’ve done without.
Immediately after being diagnosed with ALS, my Uncle Carter and Aunt Meg contemplated the idea of moving Nonnie into their house for the final months—to be with her as much as possible. But when she deteriorated so much and so quickly, they realized they needed to place her in Hospice care, “an end-of-life care provided by health professionals and volunteers. They give medical, psychological and spiritual support.”
During this time, I learned that a hospice center doesn’t prolong life, but instead makes death more comfortable for the patient and the patient’s family. The hospice center that took care of Nonnie did the best they could in making sure she died a dignified death. Dying a dignified death was an understatement for Nonnie. I’m confident she died at peace, while being loved by so many people.
Just like she would do with any occasion, we threw a grand party after her funeral to celebrate her life. Nearly the entire town of Austin, Minnesota had sent flowers, brought over food and/or attended the funeral services. It was quite a sensation to see. So many people loved my grandmother. And while ALS took her from this world very quickly, her spirit will never leave it.
Rest in peace, Nonnie. I’ll see you up there after my life-long party.
[Update]: I have seen a powerful web series on Blip.tv that follows a young man and wife, Tim and Kaylan Lafollette, through his everyday struggle with ALS. It’s extremely powerful and well-produced. Worth a watch: