Erik Quinn: The Heart of a Family: The Agony of D'Feet

Sunday, September 28, 2008

The Agony of D'Feet

My friend previously asked me to do the ALS walk, and I quickly agreed. Because his disease is not public knowledge, I keep his name from my posts. At his suggestion, I named our team something random and ended up choosing something based on a private joke between the two of us.

We arrived at the park where it began, and Gloria Estafan music bubbled loudly from two speakers held by metal stands. We checked in and were provided shirts. I went behind a bush and peeled off the shirt I wore, replacing it with my new one. We then walked to a quiet spot by the river within earshot of the festivities and began one of our usual conversations peppered with horribly dark humor other people would likely find offensive and tried to relax. When it was time to take team photos, we remained steeped in our anonymous, private spot and continued to talk until the walk began. When my friend spotted bobbing, colorful helium balloons, he jokingly complained he didn't receive a "f*cking balloon." I quickly offered to approach a volunteer and ask for just that. And right f*cking now. He laughed at the overly sweet tone I used to express such profanity.

The Walk to D'Feet ALS is not a race. There are no numbers to pin to your T-shirt or striated, muscular legs bouncing nervously about at the beginning of the thing ready to lead the way. This is because ALS takes your ability to ambulate on your own completely from you. If you can walk at all, you are ahead of the game. There were just barely enough people to classify us all as a crowd. The T-shirt I wore said, "Walk to Defeat ALS. Because you can." An ominous string of brand new, empty wheelchairs on display lined the starting area. I tried not to look at them. I made the assumption that most of the people walking were friends or family of those who had passed away from ALS. Many wore stickers that stated they were walking in memory of someone. I only saw a few men in motorized wheelchairs, and they zipped by us with gusto. It was obviously a struggle for one man to speak. Another man sagged forward in his seat, surrounded by loved ones smiling and laughing. My friend noted that he did not see many people with oxygen tanks and ventilators to indicate they have the type that he himself has been stricken with (bulbar onset). I nodded and then glumly noted I saw nobody at all fitting that description.

Not a good sign.

It was strange attending another fundraiser for anything other than WS. Apparently, George W. Bush recently approved a patient registry for those with ALS, which is a step in the right direction. I know what it's like to grapple with something that has no cure, but I do not know what it is like to eventually forfeit the last of your hope and die from it. Amazingly, my friend still has hope most days, despite his slowly progressive symptoms. If anyone can beat this thing, he can. After all, he is the most bullheaded, stubborn bloke I know. He tells me constantly that he is a "gamer." Because of this, it is still really difficult for me to see anything but his strength. He also hides his pain from me. I am largely blind to his physical difficulties, so when they are visible to me, I am positively shocked. As the weeks go by, however, I find myself less and less shocked by the frequent trips to the hospital and the breathing treatments.

We began the walk, and it became clearly apparent I had consumed way too much caffeine. I was very edgy and felt like shooting someone. I was soon able to relax and began to enjoy the sights along the river. We passed beautiful girls clad in Lycra exercising and families lounging at metal tables enjoying juicy hamburgers at a local restaurant. We provided a running commentary of it all, as we usually do. We caught the scent of food sizzling on grills and seafood smoking and groaned obscenely. He apologized for needing to stop halfway at a park shelter to rest. He seemed to be in thinly-veiled agony, fighting one leg that didn't want to cooperate, but he continued anyway, limping to various degrees along the trail. Despite this, we were not last. One more team finished behind us, and we found this perfectly acceptable.

We finished the walk, quietly exited the park, and began our search for food, which my friend now has trouble enjoying because of swallowing and resultant lung infection issues, for which he is on IV antibiotics now. He devoured a respectable amount of food, anyway. To my amusement, the bartender was politely warned that although I definitely looked the least frightening of the two of us, I was horribly dangerous without food in front of me. He laughed at this and hurried to get our plates, which came to us hot enough to raise blisters on our fingertips. We dined on shrimp, chicken, and crab in front of a football game playing out on the screen above us. I savored the way my glass of chilled pinot gris perspired in my palm.

And I tried not to think about next year's walk.

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Blogger Julie said...

I am so glad you had that day with your friend. I have a few dearly treasured friends that I can't imagine knowing that there days were few. My heart goes out to you.

6:03 PM  
Blogger Tara said...

I'm so sorry you are having to watch your friend go thru this (so incredibly sorry that he has ALS). My friend's father passed away from ALS, but I was not close to him - I only listened to my friend when he needed to talk. I really can't imagine watching someone go thru such a debilitating disease. I will say, however, that your friend is so blessed to have you there walking this road with him and supporting him. You are truly one of a kind, Nancy. There needs to be more Nancy's in this world :)

6:55 PM  
Blogger Laura said...

You are a true friend.

3:44 AM  
Blogger Michelle said...

You are blessed to have such a beautiful friendship.

5:18 AM  
Blogger Every minute counts.... said...

I am glad that you got to spend that time with your friend. I think of you and your friend when I spend time with my older brother. Watching him struggle with walking, eating and being told he has 5 yrs or less before being nursing home bound...makes me think of your friend with ALS which has caused that same process to progress even faster. I am thinking of you.


7:16 AM  
Anonymous Auntie CInnamon~ said...

I am so happy to hear that the two of you made the walk and even finished! You two rock!

Your dear friend is always in my thoughts and prayers!

Hope your week is starting off great!!

BIG Hugs,

10:15 AM  
Blogger kathi said...

Sounds as if you're not only both blessed to have each other, but that you both appreciate the other.

2:05 PM  
Blogger Lizard Eater said...

Aww, Nancy. God, I'm sorry.

I love the vision of you walking alongside him. I contend that "Footprints in the Sand" is about all the people who walk along with us in our tough times. F'ing balloon and all, if someone looked in your eyes, I think they would have gotten a glimpse of God.

3:07 PM  
Blogger Ava Jewel Leilani said...

Nancy, I don't know what to say except you are a Fab Friend, Fab Momma, and a Fab Woman. As always you and your loved ones are in my thoughts and prayers.

6:52 PM  
Blogger Michelle said...

I'm sure your friend deeply appreciated your support of him at this walk; I'm just sorry he is going through this and you are having to see this happen to him. It sounds like it was a very emotional walk.

8:42 PM  
Blogger Penny said...

What a wonderful friend you are.

7:57 PM  

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