About a week ago, I was lucky enough to attend another ALS support group in North Riverside. Support groups are a fabulous way for me to meet people with ALS and their loved ones. My parents drive me to every support group because I don’t have my license. This time, unfortunately, my mother took a wrong road, so I ended up walking into the meeting late.
After I took my seat, I looked around the room. Almost all the attendees were familiar to me, but there were a few people sitting at a table I didn’t recognize. The conversation continued as the members of the ALS Association led the discussion. I sat silently. A large part of the discussion focused on the diaphragm pacing system (DPS). The DPS is a device that helps people with ALS to breathe easier. A few attendees learned more about the device and the conversation continued onto other devices that help people with ALS. Finally, it was my turn to speak. Since the diaphragm pacing system was covered, I decided to talk about Dr. McLaren’s experience with the device. I began telling the others about his surgery to have the DPS implanted. I felt my voice tremble as I remembered this low point of Dr. McLaren’s battle. By the time I was done speaking, I felt my heart sink low.
Whenever I reach a really low point in my ALS work, I desperately want to crawl under the covers of my bed and hide. But that’s not what Dr. McLaren would want. He would want me to get back up and keep fighting ALS. So at times like this, I shut everything negative out of my mind, from thoughts about failing at my ALS work to losing Dr. McLaren or anyone else to ALS. They’re all gone. Then, I say to myself, Stay brave for Dr. McLaren. Stay brave. Please just stay strong for him. Please. I chant it over and over again. Saying this brings me to think of Dr. McLaren and his brave fight with ALS. I imagine him reclined in his bed, his family and friends surrounding him. A jacket is covering him to keep him warm and his left leg is propped up at a 90 degree angle with a pillow. As of March of 2014, ALS has nearly taken away all the movement in his body. The skin on his face has a shiny tint to it and looks almost fake, like it hangs to his bones without much purpose. But his eyes are full of hope as he looks over at me sitting at his side with a huge smile on my face…..The thought flies away from my mind as I feel myself rising from the ashes. With Dr. McLaren’s incredible courage, I feel like I can climb over any mountain on this difficult journey. He may not be able to move anymore, but I take him everywhere with me in my heart.
Feeling much stronger, I focused my attention on the activity continuing in the room. The woman sitting in the motorized wheelchair to my left was a familiar face to me. Anne was diagnosed with ALS a few years ago and I met her at a support group in February of 2013. The moment I met her, I knew I had to get to know her better. Since then, I’ve been able to learn more about her incredible ALS journey. Her kick-ass humor and strength are absolutely inspiring, and I always look forward to seeing her beautiful smile at support groups and other ALS events. Currently, Anne’s voice is deteriorating due to the disease and I can barely understand her. During this support group, she began speaking about another woman who had recently lost her battle against ALS. Anne felt sad because this woman had been taken by the disease so quickly and I could see her pain. Unfortunately, ALS is different for each fighter. Some people lose their battle within a year and for others it can last more than a decade. For this other woman, her time was short and this deeply troubled my friend seated next to me. “I lost her so quickly,” she said sadly. “We were out for drinks just a few months ago and now she’s gone. When I get to heaven, we’ll meet up and have drinks together.” I looked down at my lap because I was at a loss for words. All I could do was smile weakly at her, hoping I could provide some comfort.
The minutes passed and soon the support group was over. It had flown by way too quickly. Before I left the room, I went to the side of my friend Anne in her motorized wheelchair. With a huge grin on my face, I told her it was great to see her. It was truly wonderful to be with her again, but all I could do was smile. Just smile. To cover up the anger I felt towards this god awful disease. HOW?! How could it do this to such kind and beautiful people like this wonderful woman? And why were there so many people just going on with their lives, unaware of those battling ALS? I wanted to scream, but knew I shouldn’t let my anger get the best of me. Being angry wasn’t going to help Dr. McLaren or anyone else fighting the disease. And Dr. McLaren would not want me to be angry every day. He would want me to focus on the positive moments and use that to help those suffering. So, I let my anger go. I looked down at my friend in her wheelchair. She was smiling wide and laughing, happiness visible on her face. Seeing this incredible strength put a smile on my face and I continued smiling even as I walked out the door.