Along For The Ride

here is a link to the audio version, in case you would rather listen to this blog: https://www.youtube.com/watch?v=W3vfErhFV8c

I wrote and posted my first blog in October 2013. I had initially named it My Life but recently decided to add to that title the phrase My Life, A Journey With Ataxia Along For The Ride. I will explain my reason for the change by addressing this issue in the current blog.

Sometimes, not all the time, but sometimes my Ataxia can feel like an annoying acquaintance who is continuously bumming something off me. If I go anywhere, it is always there to ask if I would mind giving it a ride? " Hey can you swing me by....?, or,"Would you mind....? Honestly, I feel like shouting, " YES I WOULD MIND, WOULD YOU PLEASE,  PLEASE FOR THE LOVE OF ALL THAT'S DEAR, JUST FOR ONCE, LEAVE ME ALONE"!? But I can't, because I was always taught to be polite, (thanks, mom). Actually, I did lose it one time, and although I got the sentiment across using slightly different wording than those referred to above, it did not affect this persistent, stubborn, thick-headed interloper. It also tries to slip in while I'm not looking as if I won't notice. Well, I noticed! It's always leaving muddy footprints and other messes everywhere, and it is pretty obvious that "Hey everybody, Ataxia is here"!

Well, Ataxia officially moved in in 2003 and has now become an always-present nuisance. I go to bed at night, and it's there. I wake up in the morning, and it's there. Ataxia scrutinizes ever thought and plan for the day, like it's saying about my ideas, " Yeah, I find it cute...the way that you still believe  you're in charge...and don't get me wrong, this all sounds great, but here's how it's actually gonna go."

But even though my Ataxia thinks it is in charge of my life, I am on a journey where it is just coming along for a ride. What does that mean? For me, it has become a constant reminder that my Ataxia does not define me nor will it ever have me.  That Ataxia is not the one that is taking me for a ride, BUT I am the one taking it for a ride,( think of the Moria scene in the first L.O.T.R movie where Gandalf yells, "You shall not pass)! It consonantly, and incessantly tries to mess me up physically, but it will never touch my Spirit. This brings me peace and assurance, and no matter what your situation it can for you as well my friend.

Care To Super-Size That Mess?

here is a link to the audio version, in case you would rather listen to this blog: https://www.youtube.com/watch?v=vP2pncf1Dxw

    I've always, always made a big mess...even before I was diagnosed with Cerebellar Ataxia. Messes were just part of the cooking experience, especially when it came to being in the kitchen. In nineteen-eighty-six, I attended a Culinary Institute in Portland, OR. and could spill, slop, and/or drop food that I was preparing with the best of them. But post-diagnosis? That puts me in a whole another class my friends,(think Swedish Chef from the Muppets). To me, good tasting food has become synonymous with the need to do some serious clean-up. I have just accepted that things are going to get, um....interesting. Anyway, it seems like the harder I try to keep things tidy and the counters clean the worse it gets. So why fight it? I think I'll just go with it, and so......

    I am seriously thinking of opening up a restaurant that I would name Che'SpaZtic's. The theme would be, Where friends are always welcome, and the food is always flying. Everything would be made and cooked in a big glass-encased room that would be in a central location and surrounded by the dining room so that everyone would have, and enjoy, a view of the kitchen. This would serve a dual purpose. Watching food being prepared, and thrown around, by the cook staff would be an educational experience, but would also provide the night's entertainment. So, Che'SpaZtic's would sort of be like going to a dinner theater, and there would, of course, be a cover charge as such. All drinks would be personally shaken simply by default, not stirred, and the water glasses would be double the size of the standard water glass that you would get at a regular sit down restaurant. That way, by the time the waitperson arrives at your table, and half the water has sloshed out while they walked, you will still receive a nice amount of ice water. There will not be a dress code, however since I will be there, the use of rubber clothing or bibs would be strongly encouraged and available for rent from a kiosk in the front foyer. And, of course, there would be a theme night. The most popular of which I predict would be food-fight night, although I can't figure out how to make that night any more distinguishable than most regular nights at Che'SpaZtics.

    The only question I have is.....Now that you know the hazards and potential perils of being around me.....would you spend an evening at that restaurant? Leave me a comment; I'd like to hear your thoughts.

The Absent Walking Stick

here is a link to the audio version, in case you would rather listen to this blog: https://www.youtube.com/watch?v=2JP_xeQKw2E

    The Absent Walking Stick. It is the title I came up with, but upon further reflection, I suppose it could have been titled, The Amazingly Non-Existent Walking Stick, or even, The Stick That Very Nearly Never Was. But, I should start at the beginning of my association with the walking stick so that you might have a better picture or understanding of my quest.

    About five years ago I found myself at the place physically where a long, (six foot), sturdy stick would be of great help to me. I found a very nice one from a local woodcarver and was quite happy. Happy that is until I fell on it and snapped it in half. I had laid it diagonally across a chair and sat down on another. When I stood up, I lost my balance and fell right on the stick. Oh well.

    I sought out the same wood carver and ordered a custom walking stick with my name wood burned onto it. Oh, and I should also mention that it has a small compass on the top in case I am miraculously cured of my Ataxia and decide to go on a hike. The sentiment is nice, and it is a thoughtful touch, but it is a bit redundant as I have the food trails that I leave behind, ( Without A Trace, #fourteen), and all the noise I make to mark my position for the First Response/Rescue Team. The Carver was also able to salvage the longer portion that I had kept from the original stick. It is about three feet long now and I'm thinking would work perfectly for a future grandchild, (just saying).

    It was around that same time that I found a unique walking cane at a little shop at the Oregon Beach, which is close to my home and that we visit often. I've used it on several occasions, but it just doesn't give me the stability or confidence of a large stick. In fact, the Neurologist I see advised me to use a full-size stick as opposed to a cane because canes encourage you to bend over and it simply falls right over with you whereas a big stick helps you to stand up straight and gives more support when you stumble.

    All of this works great provided you do not get it tangled in your feet while walking and trip yourself. And yes, by you, I mean me. Not only have I been alarmed by my own shadow, ( a story for another day), but I have a wandering foot. On occasion, the foot has wandered what it would be like if it circumvented the natural one-foot-in-front-of-the-other process and tried going around the outside of the stick,( I know it should be wondered not wandered, but I thought wandered fit better here to describe the foot's logic at this moment). As it did not adequately inform anyone else involved of this move, the result was a trip....and, not a good one.

    My dad had a small Prune Orchard at his house that he removed, and he made me a walking stick from one of those trees. Prune is a hardwood and makes an excellent walking stick. It is the smaller white one seen in the picture below. Last Fall I was at the Oregon Beach again with my family, and we were walking by the edge of the water. I found a stick that was the perfect size for me, so I took it home and dried it out. A month or two later my brother-in-law took it home with him and turned it into a very nice walking stick for me.

    My wife and I took a trip to Maui in January of this year, and I debated whether or not I would take a walking stick on the plane with me. Melissa suggested that maybe we should just buy one over there and bring it back, which I thought was an excellent idea because I wanted a third stick and one from Hawaii would also be a memento of the trip. The only problem with that plan, sound as it may have been, was that we got over there and couldn't find a stick anywhere. We talked to shop owners who always recommended another potential shop or wood carver just down the street.  It started to feel like we were looking for the pot of gold at the end of the rainbow. I expected to go over there and find sticks in abundance, but one carver I talked with told me that full-size walking sticks aren't made very much because everything is hand carved, not turned on a lathe, so it is more time consuming and isn't done much. About the time that I was ready to give up the search was when we ran into a carver named Lani who had a display table set up at a Plantation we were visiting. I just happened to mention my quest and the negative results, and he replied that he could make me a stick. After talking about the wood he'd use, and the height I wanted, we asked about the price. Lani answered in a very casual way that he could easily do it for between $450 and $600.Well, since this was about $0.50 more than I could pay, I passed.

    Two days later we were going to a large outdoor Swap Meet on the campus of Maui University, which is in the city of Kahului when we saw Lani again. He was in one of the booths and had a table full of his carvings. He said that he hoped to see us again because he felt bad when I walked away. When he told his wife that night that it looked like I was unstable and could use a stick, she said that he should have just gone ahead and made me one for the price I wanted to pay. So he said he would do one for me and mail it to the states because at that point we were leaving in 2 days.

A Bond Fantasy Meets An Ataxian Reality

here is a link to the audio version, in case you would rather listen to this blog: https://www.youtube.com/watch?v=fC7DbK3NniE

Lately, I have been impressing myself with my high levels of physical skill, grace, and fortitude. Of course, all of it has been in my mind, but still, they quite honestly have been amazing. However, when I compare these to what I actually can do, THAT is where the frustration lies. Through the vision of fantasy I approach a problem as confidently as James Bond, but through the haze of reality I fumble and flap around like PeeWee Herman. This fantasy-vision/hazy-reality thing is a lot like the old Wide World Of Sports line, "The thrill of victory and the agony of defeat."  On a perfect day, I feel like a goldfish that's jumped out of its bowl and is helplessly floundering and twitching,(not twerking.....twitching)! But, I've come to believe that I must always look at the bright side.....so I think," Hey, I was able to jump"!

A recent example of the whole fantasy-vision slash hazy-reality thing comes from just several days ago. In our living room, we have a ceiling fan that has four glass-encased lights hanging down. I can reach the lights easily and usually can change the bulbs without too much difficulty. On this particular time, however, I saw that one of the bulbs had broken away from the base, which meant that the end was still in the light socket. Well, like I said, I can reach the bulbs to unscrew them, but the light fixture is a little too high for me to work on the base of the socket. I was going to have to use my needle nose pliers to try and twist the metal base out of the light socket, but I was also going to need a higher vantage point. Enter James Bond. I went into motion,(Okay, so maybe it was slow-motion), and I knew that since the step ladder was not going to work for me, apparently I would have to come up with a viable alternative. That's when I got the idea to use our bench. It was perfect, and the plan began to take shape in that realm of my fantasy Bond-like thinking. I would simply place a chair on either side of the bench, giving me a handhold for stepping up on the bench and providing stability while I worked. In my bond-like state it seemed like a good plan, but as soon as I stepped up onto the bench, PeeWee made his entrance. I couldn't even stand up straight, and my legs started shaking so badly that it quickly became very apparent, (yes, even to Bond), that this was not a good plan. I put everything away and then tried it from a standing position, but that too was just not going to work, (I now get dizzy looking up or trying to do things above my head). Luckily, our youngest daughter is more than happy to help me with these little projects and was able to easily unscrew and remove the metal base from the light socket.

As I stated earlier, this is where the frustration lies. I'm still coming to grips with the idea that, although I want to take care of everything myself, reality quickly comes crashing in and I have to admit that I can't. The thrill of victory and the agony of defeat. Sigh.