My first experience with ALS (amyotrophic lateral sclerosis aka Lou Gehrig's Disease) came to me about a decade ago, as I stood in my kitchen one warm spring weekday morning in Ellensburg, Washington. A woman I had become fast friends with over the last couple of years, T, called me as I was getting ready to leave for work to tell me they finally had a diagnosis for her husband and his persistent, debilitation back pain.
She called it Lou Gehrig's Disease first - people recognize it when you call it that. The ONLY thing I knew about it was that it was bad. The worst, actually.
I remember my brain kind of going fuzzy for a second. I felt horrible that I had to excuse myself from the phone call and leave for work. I wanted T to be able to ramble on as long as she needed to about it. To tell me everything she knew. I loved this family dearly. T and G were in their late 40s or early 50s and they had 3 boys, the youngest not quite a teenager yet. Superbowls, Christmas parties, their oldest son's 21-Run....all kinds of good, fun things we did together over the few years I had known them. It was a quick but solid bond we had all formed, even though we were more the oldest son's age.
I got to work that morning and sat at my desk and just stared at nothing for a while. Did I hear her right? I did a quick search on the internet to see exactly what the diagnosis meant. No. There's no WAY that's what she said. I had to have heard that wrong. I stared out the window a little longer. Finally I picked up the phone. The second she answered I apologized for not staying on the phone with her when she had called me that morning, and could she please tell me again what the diagnosis was.
Mother. Fucker.
I remember one day he fell in their entryway right in front of all of us. It hurt his pride more than anything else, but my husband and their sons literally moments later - set to work and built a ramp, right then and there, so he wouldn't have to maneuver over the threshold of the door. I remember telling him to delay getting in that wheelchair as long as possible because it would be too easy to not get out of it again. Avoid the dependency as long as you can. In this sort of situation it's kind of a one step backward one step forward for a little while. In other words, maintaining. Maintaining is better than progressing here.
I honestly feel a little thankful that it was a relatively quick progression for my friend once they finally had the diagnosis. Two years or so. As meaningful a two years as you can make it. Long talks, lots of laughing. They smoked weed together. T and I had discussions about assisted suicide, which was on the ballot. I thought she would be in favor of it, given G's inevitably HORRIBLE demise but surprisingly she wasn't. G came to terms with and was accepting of their middle child's homosexuality when before he hadn't been willing to accept it at all. He realized his son is his son and he loves him not matter what. It became a non issue. I wish I could have been around for those last couple of years, to really see how fruitfully they spent their time.
The last time I saw G, as my husband and I prepared to move away from Ellensburg to Vancouver, he hugged me from his wheelchair and told me "You know, I have really grown to love you, Sally." I cried.
We had gotten a phone call that G was starting to slip. They knew it was coming soon. Their middle child had been in nursing school and was able to help a lot at home with the hospice care. I think that created a really deep and meaningful end for the two of them, to make up for when it may have been a little touch-and-go at times in an earlier point in their relationship. What I don't remember is the call when he died.
I never had really heard anything about ALS until that point in my life. It definitely seems to be getting much more attention in the last few years, with the Ice Bucket Challenge and that sort of thing (which I initially was critical of. Why aren't these people giving money to the cause instead of dumping icy cold water on themselves? But the Challenge DID raise a lot of money. AND copious amounts of attention!)
T recently remarried (we told her jokingly that she married for love the first time. Now it's time to marry for MONEY! But I think she got lucky and actually did find love). Their sons are grown, with families and jobs and plans and laughter and happiness. I have no doubt that G is with them every step of the way, blessing all of it. Their family bond was so good and real and raw and something to strive for. They were close-knit and loved each other so well.
Really long story really long, I read this article today. I have seen what ALS does to a person and to image that SEVEN YEARS after a diagnosis this happened....it's just amazing. It's absolutely inspiring, and I know that it will come to mind when I am struggling on a run. It'll help push me along.
I love what positivity, drive and mind-over-matter can do for a person. We all have the amazing capability to do a little more. Push a little harder. Be a better person. Inspire one another. Do good things. Leave an impact. Love with all you have. My friends T and G, as well as the gentleman in this article (and the two other folks I know but didn't talk about here who also fought the good fight) are doing or did exactly these things. They did the very best with what they had while they could with joyfulness and grace and made positive, meaningful impacts along the way.
She called it Lou Gehrig's Disease first - people recognize it when you call it that. The ONLY thing I knew about it was that it was bad. The worst, actually.
I remember my brain kind of going fuzzy for a second. I felt horrible that I had to excuse myself from the phone call and leave for work. I wanted T to be able to ramble on as long as she needed to about it. To tell me everything she knew. I loved this family dearly. T and G were in their late 40s or early 50s and they had 3 boys, the youngest not quite a teenager yet. Superbowls, Christmas parties, their oldest son's 21-Run....all kinds of good, fun things we did together over the few years I had known them. It was a quick but solid bond we had all formed, even though we were more the oldest son's age.
I got to work that morning and sat at my desk and just stared at nothing for a while. Did I hear her right? I did a quick search on the internet to see exactly what the diagnosis meant. No. There's no WAY that's what she said. I had to have heard that wrong. I stared out the window a little longer. Finally I picked up the phone. The second she answered I apologized for not staying on the phone with her when she had called me that morning, and could she please tell me again what the diagnosis was.
Mother. Fucker.
I remember one day he fell in their entryway right in front of all of us. It hurt his pride more than anything else, but my husband and their sons literally moments later - set to work and built a ramp, right then and there, so he wouldn't have to maneuver over the threshold of the door. I remember telling him to delay getting in that wheelchair as long as possible because it would be too easy to not get out of it again. Avoid the dependency as long as you can. In this sort of situation it's kind of a one step backward one step forward for a little while. In other words, maintaining. Maintaining is better than progressing here.
I honestly feel a little thankful that it was a relatively quick progression for my friend once they finally had the diagnosis. Two years or so. As meaningful a two years as you can make it. Long talks, lots of laughing. They smoked weed together. T and I had discussions about assisted suicide, which was on the ballot. I thought she would be in favor of it, given G's inevitably HORRIBLE demise but surprisingly she wasn't. G came to terms with and was accepting of their middle child's homosexuality when before he hadn't been willing to accept it at all. He realized his son is his son and he loves him not matter what. It became a non issue. I wish I could have been around for those last couple of years, to really see how fruitfully they spent their time.
The last time I saw G, as my husband and I prepared to move away from Ellensburg to Vancouver, he hugged me from his wheelchair and told me "You know, I have really grown to love you, Sally." I cried.
We had gotten a phone call that G was starting to slip. They knew it was coming soon. Their middle child had been in nursing school and was able to help a lot at home with the hospice care. I think that created a really deep and meaningful end for the two of them, to make up for when it may have been a little touch-and-go at times in an earlier point in their relationship. What I don't remember is the call when he died.
I never had really heard anything about ALS until that point in my life. It definitely seems to be getting much more attention in the last few years, with the Ice Bucket Challenge and that sort of thing (which I initially was critical of. Why aren't these people giving money to the cause instead of dumping icy cold water on themselves? But the Challenge DID raise a lot of money. AND copious amounts of attention!)
T recently remarried (we told her jokingly that she married for love the first time. Now it's time to marry for MONEY! But I think she got lucky and actually did find love). Their sons are grown, with families and jobs and plans and laughter and happiness. I have no doubt that G is with them every step of the way, blessing all of it. Their family bond was so good and real and raw and something to strive for. They were close-knit and loved each other so well.
Really long story really long, I read this article today. I have seen what ALS does to a person and to image that SEVEN YEARS after a diagnosis this happened....it's just amazing. It's absolutely inspiring, and I know that it will come to mind when I am struggling on a run. It'll help push me along.
I love what positivity, drive and mind-over-matter can do for a person. We all have the amazing capability to do a little more. Push a little harder. Be a better person. Inspire one another. Do good things. Leave an impact. Love with all you have. My friends T and G, as well as the gentleman in this article (and the two other folks I know but didn't talk about here who also fought the good fight) are doing or did exactly these things. They did the very best with what they had while they could with joyfulness and grace and made positive, meaningful impacts along the way.
Comments
Post a Comment