Okay….. lazy, lazy, lazy! But honestly, I have had a lot going on. Birthday, visitors, preparation for my trip to Wisconsin later this summer. And of course the day to day rigors of being an ALS patient. My great friends Glen Wilson and Scott Prophett came into town to help out with things. Glenn is an Arborist/Paramedic from Baton Rouge and will be visiting once per month to help out with my care and maintenance to give Lita a break. He will be thrust into the rotation with Scott and Michael ” House ” Tain, . I couldn’t ask for better caregivers. Lita, her Dad, Scott, Glenn, and I ventured out for dinner last Friday night, to the Phillipi Creek Oyster Bar. Needless to say it was pretty busy. They graciously found us a table right away though. A table for eight to be precise. I take up a lot of space in my wheelchair. Well, we made it to the table without incident. Just the normal ration of stares. You would think that in this day and age, that nearly everyone would have seen a skinny white guy in a metal flake blue wheelchair with a vaccum cleaner hose sticking out of the front of his neck. Anyways, all was well and a great time was being had by all, until a couple was seated a few tables over. After a brief moment, the gentleman noticed me and proceeded to wad up his face. I think I made him uncomfortable. He leaned forward and whispered to his female companion, prompting her to turn and give me the 30 second stink eye stare. They continued to whisper and stare for the next few moments. And then I decided it was time for me to defend myself. So I did what any self respecting ALS / quadrapalegic patient would do. I waited for them both to look my way and….. I stuck my tongue out at them, smiled, and winked! They stopped staring 😉
I have had folks look and look away, small children ask their mothers ” What’s wrong with that man “? and even had folks turn and walk the other way. Whatever. I would love for the mothers to bring their kids over to me and let me explain my condition. Probably not gonna happen. I did have an older gentleman come up to our table at lunch one day and politely inquire as to the cause of my condition. After a brief conversation he thanked us for getting out in the world. Then he paid for our lunch. And every time we saw him after that day, he would always say hello and ask how we were doing…..and buy our lunch. There are Angels among us. Not because he bought lunch either. Because he cared enough to inquire. Any chance I get to educate folks about my illness i’m happy to take it. Hell, a year ago I knew nothing about it. Oh, by the way. Yesterday was the one year anniversary of my diagnosis. I’m still here. Beeing Awesome!
I’m going to try to attach a video compilation of my morning ritual. Hope it depicts our challenges as well as the Awesomeness with which we meet them.
I’ll keep smilin’ and you keep smilin’ back
Go to youtube.com
Abeesmith walk a mile in my shoes
Yes I am. There are many reasons for that. The one I am contemplating at the moment is that I still retain the ability to express myself through speech. That’s not the case with the large percentage of PALS. Imagine, if you will, losing your ability to have a simple conversation with someone. Or to say ” Hello ” to a friend. Or ” I Love You “. What if you couldn’t convey an immediate need in the instance of an emergency ? If your imagination isn’t up for it, grab a roll of duct tape. Place a strip across your mouth. See how long it takes before you can’t take it anymore. Or before the folks in the world around you discontinue interaction with you. Like I said, I am very lucky that I can still speak. Even though I sound strikingly similar to Stephen Hawking. 😉 Not that that is a bad thing. If I lose the ability to speak, there is some amazing technology available that can be added to my Tobii Eyegaze that will speak the words that I type. It will make for a slow conversation, but think of the excitement of anticipation.
Lita and I intend to create a foundation that will provide technology to PALS that will allow them to remain relevant through communication. I know how important it is to me to not only reach out to my world through my computer, but to also hear back from others. When the time comes, I’ll be asking for donations. If you or someone you know has questions about the why’s or what for’s, I’ll be happy to provide the answers. Don’t be surprised if they come in the form of a silver sticky strip.
Talkin’ is Awesome!
In 1939 Lou Gehrig was diagnosed with ALS. He was told that the disease would gradually paralyze him and eventually limit his ability swallow and then to breath. His mind would remain completely aware of what was happening to his body until the end. His life expectancy would be two to three years. He lived two years after his diagnosis. ALS is better known as Lou Gehrig’s Disease. I guarantee you that isn’t the legacy he wanted. In 2013 I walked into a neuroligists office for a second opinion and received the same news. Nothing has changed in 75 years.
Legacy. This word has popped in and out of my life quite frequently for the past 20 years or so. Beginning with my venture into instructing others in safe and efficient work practice in the arboriculture profession. In reality, consideration of one’s personal legacy , occurs at least subconsciously, early on in life. Certainly when my children were born, and I contemplated what being a great father would be. And prior to that, a good husband. And before that, a good son. A good friend. And woven into that fabric of my life, were the intricasies of being good at sports, school, etc. All these things became part of my ever evolving legacy. As with anyone, some I was more successful at than others. Time and maturity can accomplish amazing things. I truly am a work in progress. Perfection is my goal. Unfortunately, some of my shortfalls will have to be remedied on the other side.
Since my diagnosis, the word legacy has come up quite often. For obvious reasons I suppose. I have received messages from many friends and colleauges from around the world including me in their prayers. I have also heard from former students, thanking me for sharing my knowledge of a particular technique or tool with them. I was presented with the Edward Bok Award by the Florida Chapter of the International Society of Arboriculture, as well as the Commercial Arborist of the Year by the Society of Commercial Arborists. I recently received word that I have been selected as the latest recipient of the Millard F. Blair Award of Distinction by the International Society of Arboriculture. This recognition leaves me speechless. Not only for whom the award is named for, but for the great company of past recipients. I’m not much for heroes, but if I was….
During my the courses I taught, I would share with the participants, bits of wisdom that had been passed along to me. Some by professional aquaintences ,and some by my father and grandfather. In doing so, I was forwarding their legacies. When I Mention my grandfather in this context, I am referring to James Miller, my mothers father. I spent many of my early summers at my grandparents house, and learned a great amount about hard work, self employment, and what good,honest work ethics were. I never knew my dad’s father. His name was Bee Smith. I did learn what he was like through conversations with my dad. He would share stories while we sailed on my dad’s sailboat or fished from the Larson motorboat. My GrandPa Smith owned a tug boat. He delivered the mail and supplies to the island folk and fish houses from Fort Myers to Tampa Bay. I remember visiting an old fish house by boat with my dad, near Boca Grande, and him telling me about working with his father on the tug. I remember feeling my dad’s emotion in the words he shared and also in the expression on his face. this was Bee Smith’s legacy being forwarded. Good or bad.
I’m going to continue on the topic of legacy in another blog as it has become increasingly important as of late. Not in a negative sense by any stretch.
And Bee Aware of Your Legacy
I’m not quite sure what to say or even where to start. Yesterday was an epic day for me! For all those envolved, thank you will never be enough. Lita proved once again, that she is the ultimate “Commander in Chief” of my army. She is the love of my life. Team Cornflower raised over $10,000 for The Walk For A Cure and the Sarasota ALS Foundation. Donations are still coming in. The after party was a huge success also. Awesome time with family and friends, old and new. I got a special surprise audio happy birthday wish from none other than Steve Gleason. Thanks To my daughter Megan, for reaching out to him. If he only knew the impact that he had on me back last summer. I hope to pay it forward. As the next days and weeks pass, I hope that those of you that were able to share the day with Lita and I, will consider what “the One Thing” was for you on the day. if you wouldn’t mind sharing it with us, that would bee awesome.
I’ll kick it off. My ” One Thing ” is this…… The Love of family and friends will always overcome even the most devastating illness on earth. Our team was 60 members strong. There were approximately 600 participants at the walk. The majority of them were walking ” In Memory Of “, not ” In Honor Of “. My hope is that one of the dollars raised is ” the dollar “. Not just for me. But for all the PALS, their families and friends. Past, present, and future. And then , one day, never again. Imagine that.
ALS can take a lot away from me, but it will never, ever take the love we share
Keep On Beeing Awesome!
My T70 Portable Cough Assist was delivered and set-up today! WhoooooHoooooo! It just keeps on gettin’ better!
Great friends are here from Ottawa, Canada. The Ransom clan drove down for the ALS walk! And they brought massive amounts of donations…. in Canadian dollars! That makes them worth like twice as much as our US dollars, Eh!
See Y’all on Saturday
Rumour has it there will be an afterparty at our house.
It’s close to my 55th birthday!
Have an Awesome Day!
When asked ” How tight should I make this bolt “, my grandfather would always answer, ” Well, you don’t want it to come loose, so turn it as tight as it will go then half a turn tighter !” We call that “Puttin’ the Jimmy Miller on it “. He would also say ” If it won’t budge, get a bigger hammer. if it still won’t move then force it. If it breaks, then it needed to be replaced “. I became an expert at the technique. I plan on using the same mentality on ALS ! I am the unstoppable force AND the immovable object ! I WILL DO WHAT IT TAKES AND I WILL TAKE IT TO IT’S LIMITS !
” How much will it take” ?
” It will take it all “
As a good friend of mine always says, “If your not livin’ on the edge, you’re takin’ up to much space! “