Showing posts with label Amyotrophic Lateral Sclerosis. Show all posts
Showing posts with label Amyotrophic Lateral Sclerosis. Show all posts

Tuesday, May 31, 2016

Missing Things

Wow... this has been an intense few weeks... 

After finally allaying the fears of my friends that something was wrong, I started to slowly dip my toe back into the pool of Facebook.  It was a good, albeit weird, few weeks. I stepped back, took a few breaths, and realized that I don't have to do Facebook. Especially at the level I had been Facebooking. Keep in mind that I am someone who - for several years - had been telling friends in the museum field, "You HAVE GOT to be on Facebook!"


What an ass.

You don't have to be on Facebook. You don't have to be on any social media if you don't want to. Yes, these things can help to get certain things done. But they are tools. Tools have purposes. They vary from platform to platform. They vary from user to user. Figure out what you want and then use it.



Once I got over that, I relaxed a bit. I now log in, look around, like, comment, maybe post, and then log out. I can get more done of other things now. Yet I get to stay in contact with those who are important to me (Sometimes that contact takes the shape of simply lurking your posts).

That doesn't sound so intense!

Only because it's not.

It was/is everything else. I would say nothing much, and then I stand back and look at the whole. I am feeling that the big exhale is coming up but that is just because I feel like I have been holding my breath for the last few weeks.

Something that has been a spectre during this time of year is the anniversary of my mom's passing. We lost her to ALS four years ago (until recently, my most-viewed blog). As close as I was to her, I felt that I was dealing well. Until this year. There have been a few moments these past few months when I caught myself finally realizing I miss my mom. So with the anniversary coming up, there are thoughts. Time does not heal all wounds. Good huevos rancheros help. That or magnums of Berenger while eating taco chips...



Compounding this was the passing of our cat, Merley (мурлыкать). We had this little guy for most of 20 years. He was the youngest of our '50 pounds of cat'. Merley allowed us to live in his house for the last six years, having lost his buddies Caramel and Tigger to diabetes and cancer.

As much as they were all our cats, Merley was mine. I was the one who brought him into the house the first time. I named him, I was the one whose lap he went to. When I moved to the new job in November, he came with me as my roommate (well, he and the fish). He was the only thing that got me through living alone for two months. He was my little buddy. He flopped on my chest. He groomed my beard. He woke us at all hours with what one friend referred to as "The Cry of the Demon Cat." And he was my furry little buddy.

The last couple of weeks saw age catch up with him. One night last week, Merley passed away in his sleep. He is now somewhere annoying Caramel and Tigger with his pouncing and cuddling. But I can still hear him messing around in the house. That or we think of the doors we no longer have to close, the litter box that is no longer in the way, or the food and water we no longer have to refill. It's the small things, but that still fails to lessen the hurt.



While this was going on, my soccer fandom expanded by one team. Through watching John Green's FIFA 16 series playing the Wimbly Womblys, I was introduced to the story of AFC Wimbledon. With all of the attention on Leicester's rise from near relegation to champion of the Premiership, AFC Wimbledon's tale has received short shrift.

Fourteen years ago, the local community created AFC Wimbledon in response to the previous home club being moved to the town of Milton Keynes (46 miles as the crow flies). Starting with tryouts in the city park, the locals took pride in their 'phoenix' club. Starting in the 9th tier of the English Football League System, the Dons were promoted 5 times in 9 seasons. Finally arriving in League Two of the Football League, they saw a few rough seasons, near relegation, and a brilliant run of great play this past season.

Two weeks ago, AFC Wimbledon finished their regular season in 7th place on the table. This qualified them for a four-team playoff to determine the final club to be promoted to League One. After a win and a draw against Accrington Stanley, they received a date with Plymouth Argyle at Wembley Stadium. FREAKING Wembley Stadium. A club with a home grounds capacity of 4,850 (half standing) playing on a pitch surrounded by 90,000 seats...

This week, the club formed in 2002 beat Plymouth Argyle 2-0 and earned their promotion to the same league with the MK Dons - the team that used to be the team from Wimbledon. Being in the States, I had no easy way to watch the match. Twitter and several news feeds gave me the lowdown - but I still yelled out when Lyle Taylor scored - eliciting a "Daaaaaaad!!!" from TheGirl - and sang John Green's "Akenfenwa" song after the PK in 90'+10', laughing and crying as I did so.  John Green - the guy who piqued my interest in the club was at the match and shared his experience in his vlog. At the end, I again started laughing and crying.



The Upshot

With the downs come a few ups.

I guess that is the point here. Nothing about guns. Nothing about being a liberal. Nothing about history - well except that bit about the Dons and their phoenix-like rise from the ashes.

This has been a weird Spring. Some house cleaning - mental and otherwise. Some drama - at home, online, in the world.

But there is good. Good for all of us. We just have to look for it. It doesn't just show up. Don't be lazy. Be active in seeking it out. Huevos rancheros, kitty hugs, or Cinderella stories. Be welcome to shed tears.

Just make sure to look for and embrace the happy.



Wednesday, May 16, 2012

Health and, well, not...

Clunky title, I know.

I have been finding myself thinking about health for awhile now. Between signs my body has been giving me and signs I have seen in others over the years, I have a nice list of what-not-to-dos.

Unfortunately, while somethings are obvious - don't smoke (will likely get a sign someday), don't drink too much (already got a sign a few years back), don't eat too much (trying not to get the sign) - some things are not so obvious.

Although a lot of diseases have their known causes, there are others. The problem with these is that you could be doing everything right and you can still get it - certain kinds of cancer fall into this category. The one at the top of my mind right now is ALS - Amyotrophic Lateral Sclerosis - also known as Lou Gehrig's Disease.

Oddly enough, this leads me to food...



About a year ago, I had some huevos rancheros. best. huevos. rancheros. ever.

I was on a road trip across the Southwest. It was past lunch and we were hungry. It was also Sunday afternoon in Gallup, New Mexico. The offerings were fast food, Chinese buffet and what appeared to be a "homestyle" diner (read: bland, pre-packaged, oily, and overcooked food fit for a retirement home). As I have had most of the fast food in Gallup over the years and I know better than to chance a buffet of any kind on the road, we chose the diner... the Route 66 Railway Cafe.

As soon as I walked in, I changed my mind. I smelled the authenticity. I saw the plates on the tables. I read the look of smug satisfaction on the faces of the diners. As soon as I read the menu, I knew.

I wanted the huevos. It was a late lunch, but it's always a good time for huevos.

So, one piping hot cup of coffee later, the huevos showed up (with green sauce, of course). My travel companion spent the next half hour laughing as I "Mmmm"ed and "Ohhhh"ed through the plate (did I mention it was good?). We had a great time complimenting the food, the coffee, and my error of judging the book by its cover. I will never forget that lunch.

We left, heading east. A few hours later, we stopped at Cline's Corner. We were waiting for the vehicle we were traveling with - it had developed issues coming through Albuquerque. We decided to go in, sit down, have a 10-100, and a milkshake. best. milkshake. ever. Again, this made all the more enjoyable for the company.

I was regaled with tales of a lifetime of stops at Cline's Corner - all the way back to the late 1940s on old Route 66 in a Plymouth sedan with the windows rolled down - no air conditioning back then, you know. Many other trips occurred over the decades with her folks and her brother. Years later, these trips were her and her dogs.

This visit with me was her last stop at Cline's.



The reason for our trip was to bring my mom back home. Not eight months earlier, she had been diagnosed with ALS. When the diagnosis was made, everything started to add up. Little things here and there - at one time played off to allergies, asthma, arthritis, and other ailments - were now easily explained. As near as we can guess, ALS had started to show up in our lives two years prior - maybe three.

Within a few months of the diagnosis, she needed a walker on occasion. By Easter of last year, we borrowed a wheelchair so she could enjoy the Musical Instrument Museum in Scottsdale, AZ. The first day of this move, she drove from Scottsdale to Payson, Arizona. I think that is the last time she drove more than 30 minutes.

As of this Memorial Day weekend, it will be one year back in our hometown. She is now living with my sister and is in hospice status. Spirits are high. Friends and family are near. Laughter is still in her eyes.



So. Here we are. ALS is on our mind. I wrote this partially to let some air out but to also try to do the little bit that I can to raise awareness of the disease. Those who are friends of mine on Facebook have seen my profile pic for the month of May. It is the symbol for the ALS Association. They have been great to my mom and our family. The services and support they provide have been wonderful at a time when we needed them. The support groups associated with them have been helpful for my family, as well, for the advice in dealing with bureaucracy and anything else associated we just don't get.

If nothing else, learn the signs and symptoms of ALS. There is not a cure yet, but there are some treatments and clinical trials that are looking good. It's only too late if it is too late.