The music is loud and not at all inviting. The band is the opening act, but their guitars sound more like they are being abused rather than played. Still, we continue walking towards the noise. The park is filled with people milling around, sitting and chatting with friends, and children jumping up and down or racing around the blankets sitting on the grass. It has been so incredibly hot this day, but the sun making its way closer to the horizon and the breeze coming from the lake is starting to spill over onto the crowd.
We walk up to the entrance, and get the customary ink stamp on our hands that says we paid our dues and are welcome to come and go as we please. Matthew’s brother had extra tickets and wouldn’t let me pay. Before I can argue or even say thank you, we are instantly seeing faces we know and many more of those we don’t.
I am scanning the crowds. I glance to my right, and I notice his legs first. I don’t have to see much else. The wheelchair and his limbs are so familiar to me, I don’t even have to know who it is to know. He has ALS.
I have met this man before, but is has been a while and as always, I find myself jarred for just a second. I have seen hundreds of pictures of people with this disease, and have met dozens of people with ALS. It will never get easier, regardless of the fact that I live with it every day. Each individual may look completely different at the beginning stages of the disease, however, this man has been living with the disease for a couple years now, and the quick glance of his frailty tells me so much in so little of a glance.
My eyes quickly sweep over him, noticing the tube protruding from his neck, yet his beard is neatly trimmed. His respiratory was affected quickly after his diagnosis and after a scary situation, he had an emergency tracheotomy done to keep him alive. That was over a year ago. Now his arms and legs have the signature look of having lost muscle, the atrophy that is ALS has made his limbs not only weakened, but has shrunken them to almost skeletal proportions. Yet his face appears full and healthy. I can’t tell if it is the beard that gives him a fuller look. I think I am shocked because this is the first time I have seen him in person in almost two years. His facebook pictures were deceiving. I hadn’t realized he had progressed this far.
I wave and smile. I am happy to see him out and hopefully enjoying the day. I know the music isn’t enjoyable at the moment, but this too shall pass, and the entertainer for the evening who is scheduled to begin soon is a beloved favorite in the area, so I can patiently wait till the screaming guitars come to a stop. I look around him and see he is surrounded by his parents, and maybe others who I would assume are friends’ of family. There is no way to get closer to him to talk to him, the divider at the entrance, the loud music and the people sitting around make it impossible for Matthew and I to navigate over to say hello.
We have barely made our way past the ticket takers and volunteers when more people come walking up to us. I look down at Matthew. His own arms resembling so many others with ALS in those photos. His arms have that signature look as well. The muscle atrophy has shrunk his arms and his hands. His wrists are now unable to bend willingly back and forth. His hands no longer able to clasp, or stretch out. They are permanently held in a half closed position. He raises his left arm just barely, trying to reach out when people go to shake his hand and they in turn, quickly switch from right to left and do a quick little cupping of the fingers.
Those who know Matthew wave, or come over for a quick hello. I am used to this. It is hard to go out in public without running into people he knows. He was born and raised here, and these functions around town are some of his favorites. I often times just stand there smiling. If I am lucky, I remember some of their faces, if it’s a really good day, I can remember their names.
Eventually, the main entertainer for the evening begins his show, and people start two steppin’ and line dancing anywhere they can find space. I say this often, but I sure miss dancing with Matthew. We were hoping to win a prize or two or even a basket from the raffle items, but our time was limited, so we started heading back the way we came.
The man we know who also has ALS had left by then, but his mother came over to visit with us. We asked how he is doing. We know a little about his story and while his story is far from unique it is still sad to hear.
He was diagnosed with ALS after also having been diagnosed with MS for years before that. His wife left him last year. His parents care for him, even though they are both in their seventies, there is little money for a caregiver to help. It is a very stressful situation for everyone involved, but my heart especially breaks for his teenage son.
These kinds of stories are no different than the ones I read every day on my support groups on Facebook. Those private groups are meant exclusively for caregivers of someone with ALS. It is meant to be a safe place to vent and say the things that need to be said so the person caring for them feels supported by others who are going through the same thing. It is a place to cry, to ask for help and to ask opinions.
This man’s situation is not much different than about half of the other’s I see on these sites. He is angry. He is bitter that this is his story. He wants a different outcome. He probably feels cheated. If I had to guess, he chooses to live for his son, but maybe a part of his anger fuels him as well. I don’t know. I haven’t talked to him personally. I can only piece together my opinion by what I have read from others or have heard about his story along the way.
I am sad for his family as well. These will be the memories they are left with. Yet, I can also relate. People always ask me how Matthew is doing, and I tell them that Matthew handles this situation better than I do. And its so true!
I need to backtrack just a little to a conversation I had with Matthew the other day. I was frustrated about something, now I can’t even remember what it was. I was venting to him and I asked him why he was always so forgiving and calm about this whole situation. I asked him why he never got angry, or why he wasn’t like so many others who were cursing people around him, or even cursing that he got this damn disease. What he told me made so much sense.
He told me to imagine a dam. His emotions are behind that dam. As soon as he lets one thing break through, like disappointment in how he is treated by someone, then the dam leaks. If he continues thinking about the things he can no longer do, that leak in the dam will only get bigger. Eventually, thinking about the negative, about ALS, about dying, about wanting to have deeper relationships with family members before it’s too late, about alcohol abuse, about friends that have come and gone, about not walking, about not being able to dance, about not being able to hold me or help around the house….All these things are cracks in that dam…. and he doesn’t want that dam to break. So he focuses only on what he can still do, and the things he still enjoys and the people he does have in his life, and the experiences he is thankful he still gets. This in turn keeps his dam of emotions protected, with no cracks.
Now let me return to when we were visiting with this family. I felt so much sadness but also guilt. She told me she wished she had the support that we had. She is caring for her son who has ALS, and I am caring for my husband. However, the difference isn’t in the amount of money we have versus them nor is it about the caregiving support that we have provided by the VA versus their family who has to pay out of pocket. I am sure that it would help tremendously if they had that kind of help, so I don’t mean to downplay that part at all. I can’t imagine how scary it would be to have so little resources to care for someone you love.
What I mean is the difference in attitude and spirit. Matthew handles this with far more grace than even I give him credit for. It must take tremendous strength of willpower to focus everyday like that on only positives. It must take extreme fortitude to continue to move forward everyday, knowing what lies ahead. We have both seen the road, and it is going to be rough. He often tells me that I have it worse than him, because all he has to do is sit there, I am the one doing all the work around him. It certainly validates my feelings when I am feeling overwhelmed! Yet, he always shows me how much he appreciates me, and he always tells me how grateful he is to have me in his life, caring for him. Sometimes, I think I get so wrapped up in my own sorrow, I forget how strong Matthew has to be every. single. day.
As we walked away, I looked down at Matthew. It is cooler now, the intense heat for the day is now a memory. The sky is filled with the beautiful hues from a sun ready to set. The lake and mountains in the distance are just as calming to see far away, and as always, helps me feel centered. I can see he is looking around, taking it all in.
I asked him what he is thinking.
“I can’t imagine being angry like that. I am just so thankful to be alive!”
And for a moment, the cracks in my dam seal up, and I am thankful that my situation doesn’t seem that bad…