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.

....And For My Next Trick

here is a link to the audio version, in case you would rather listen to this blog:             https://www.youtube.com/watch?v=SnRyQcNnYEY
Since the beginning of time, (I'm talking about my time here), I have found myself in many, many awkward, humorous, and/or difficult situations. At this point, I honestly can't say if having Ataxia makes a big difference in an already accident-prone life, except to point out the enhancing powers of a physically challenging disability. It indeed has certainly made a lot of things hard or impossible. But I have to wonder if some of the things that have happened to me since my diagnosis eleven years ago would have occurred regardless of the presence of Ataxia. I will share with you stories from before and after and let you decide.  I will start with 2 stories from before my diagnosis. There are many more, but these 2 stories do the best, to sum up how things usually went.

Both stories happened in 1991 when Melissa and I lived in Virginia. Neither story has been embellished in any way, and even though they are not flattering by any stretch of the word, they are sadly all too true. Melissa was going back to school, and I worked as a cook at the college that she was attending. We lived about a half a mile away from the campus, so I would always walk or ride my bike. One morning I got ready for work like usual and began to walk. Right away it was alarmingly apparent to me that something was very wrong. But what? I didn't know and wasn't quite able to figure it out. That is until after I hobbled along for about five minutes and realized that one of my legs had alarmingly become about a half an inch shorter than the other, resulting in a severe limp. Had I suddenly developed some kind of terrible new condition? Was I now always going to limp? If I was determined and kept going could I walk it off? But after another five minutes, the condition had not improved or corrected itself. I thought," This is getting ridiculous!", so I looked carefully at both legs to see if I could determine the root of the problem. That is the moment that I made the discovery that I had put on two different black work shoes. One had a thick rubber sole that was designed to be slip resistant, and the other shoe was flatter and more lightweight. I wobbled back home, embarrassed to be sure, but also relieved in the knowledge that a solution to my problem was only ten minutes away.

Not long after the wobble incident I had again gotten ready for work and was doing a little reading before I needed to leave. Melissa had already gone, and the small apartment was quiet. All of the sudden, seemingly out of nowhere, I heard a deep but very soft gurgling or rumbling sound. I put my book down and really listened. Would I be able to hear it again? A few moments went by and then, there it was again! I began a slow and methodical search through the apartment to find the source. I would pause every few moments and would hear the strange but elusive noise again. The problem was that wherever I went,  the mysterious sound seemed to be very close but I just could not pin down its exact location. About that time I noticed a second anomaly, which seemingly accompanied the soft rumbling. It was a slight vibration, one that I could feel in the pit of my stomach. I put my hand on my side and moments later was able to identify the source. Yes, it was me, I was the source of the elusive gurgling and vibration. My stomach was growling, and I had just spent fifteen Minutes in search of myself.

Now I will share two stories from recent struggles......

As I have shared before, part of my self-prescribed therapy is to go on long walks. The day I mention here was a beautiful sunny and warm summer day. It was early afternoon, and I was about two or three miles into my walk and had just turned around to head home. I was listening to music and not really paying anything much attention when suddenly there was an enormous dark shadow spotted out of the corner of my eye just to my right. I jumped and did what has come to be affectionately known as the Ataxia Shuffle. There was, of course, nothing there because I had seen my own shadow. The only logical thing to do now was to look around and see if I had been watched. Thankfully I was walking at that moment in a back parking lot that was mostly deserted, and I think I got away clean.

Like a lot of people, I have a need for a number of keys, and the result is a pretty substantial key ring. Well, the other day I was walking across the street to my car after checking my mail and dropped my keys when I retrieved them from my pants pocket. I bent over and picked them up, but before I could stand up straight, I dropped them again. This time my reflexes responded before my brain did and I tried to scoop them up before they hit the ground a second time. I was successful. However, I did not close my hand, (the last, but crucial step to actually catching something), and managed to throw them instead up and into my face and right eye. I quickly recovered and looked around for witnesses, as this time I was not in a vacant back parking lot but right in the middle of the street, in front of the town post office.

What about you?  I would love to hear from my readers. Did you become prone to more accidents after your diagnosis? Leave me a comment and let me know. If this does not pertain to you, I would still love to hear from you!

Extreme ????

here is a link to the audio version, in case you would rather listen to this blog: https://www.youtube.com/watch?v=WSsLNd0X9vs

Having Ataxia gets me into all sorts of predicaments, situations, and can result in some bizarre physical contortions, and/or new dance steps. What happened to me about 20 minutes ago is a good example. I have no illusions that I would not survive a 10-round match in an ultimate fighting ring, but I DID just go up against my garden hose. My mistake was turning the water on before I unwound the hose from the carousel. After I pulled out the first 3 feet of hose, it immediately dove to my feet with the spray nozzle pointed up, the water on, and the nozzle locked in the spraying position. I danced, I weaved, I came out of both my shoes, I almost went down, but somehow I stayed on my feet. After several tense moments and a few new dance steps, I was able to redirect the spray and eventually stop the jetting water. Not, however, before the damage was done and I was very wet. This was a fight that was pretty close, real close, and could have gone either way but in the end, I dug deep and pulled out a win.

The Unwanted Guest

here is a link to the audio version, in case you would rather listen to this blog: https://www.youtube.com/watch?v=aDt4pfl9v4c

      

     Ataxia showed up in my life like a loud, obnoxious party crasher. It barged its way in, interrupting the peaceful proceedings, appearing to be already half drunk like it was just gracing my festivities after having been previously at a different event. It was an uninvited presence, not only as a guest that can eventually be pushed out the door, but it brought with it all its baggage, and I knew then that it meant to stay and that this was a permanent situation, (and I suspect it slipped something into my drink). I was not consulted, was never asked if it would be okay if Ataxia came over, and not involved in any long-range planning meetings on the subject. No, my life was not perfect, but it was, however, without serious physical challenges. I never had great balance or the adventurous spirit that drives many people. But I was happy. I was married, (just recently celebrated our twenty-fifth anniversary), and had three great kids. And then suddenly one day, there it is, Ataxia. The general atmosphere of the whole party changed at that moment because the baggage that Ataxia brought with it was all negative. The diagnosis was negative, the outlook was negative, and to my recollection, the diagnosing Neurologist was negative.

     When it showed up in my life, it also brought lots of stress, anxieties, and doubts. Mostly because I had never heard of Ataxia, didn't know anyone with Ataxia, and didn't foresee a brilliant future. Now, as I sit on 11-plus years of dealing with this unruly-guest-turned-permanent-resident, I can say with certainty three things. Three things that, really, are pretty closely related to each other but that have helped me remain positive and have kept me on track. To know what they are, all you have to do is send me a blank, but signed, check.........Sorry, couldn't resist......it doesn't have to be blank, any amount between $20 and $25 will be just fine. What? Oh, okay, I'll give them to you for free.

#1.  A sense of humor.
     This one came relatively natural to me; once I got past the initial negativity that Ataxia brought with it. That and when I realized that other people pay good money to feel for a short time the way I feel pretty much all the time. I don't drink very often or to excess, and I've never actually gotten into the nightclub scene. However, on occasion, I've felt like I am vigorously being shaken in a big metal tube, poured into a glass container, and skewered by a giant wooden stake that also has a green olive impaled on it. Not enough can be said about the healing effects of laughter. No, it's true that humor cannot and does not entirely and miraculously cure all ills, but a good laugh at an appropriate moment can be a balm to the soul, bring perspective, and take you to a place where you can breathe a little easier. I have found that laughter is also a great divider of barriers and can help bring walls down. It can smooth a tense situation, shed light on a dark moment, and/or bring better understanding to a scary or confusing time. I have found in my own life that by telling a joke or sharing a humorous story, I tend to feel more relaxed and comfortable. Humor can rally people together in closer bonds as they begin to identify with one another and realize they experience things that are a little more universal than they thought. And so, the reason I put humor as number 1 is because this was one of the first lessons I learned about myself. That being able to laugh in the face of my Ataxia somehow put me in charge, not the other way around. With my diagnoses came the knowledge that I could either laugh at myself and remain positive, or I could cry and make myself and those around me miserable, which would accomplish absolutely nothing.

#2.  Maintain, Maintain, Maintain A Positive Attitude.
     To me, this one has many moving parts or can be entirely different as it varies between diverse personalities and situations. How this may all come together and look for others is going to be different than how it seems for me. From the very beginning of my journey with Ataxia, my motto or theme has been to do whatever I can for as long as I can.  It may take me longer to do something like, well....pretty much most things,( it would be faster to list the abilities that are not affected).  I never use my disability as an excuse not to do something, but I do believe that reality is reality and that I can't keep trying a physical exercise, skill, or motion that I know is just not there anymore.  I gave up trying to ride a bike back in two-thousand and three upon realizing that I couldn't get very far, when, after about two seconds of wobbling like a giant jello mold, I would follow it up by immediately falling over as poetically artful as a drunk coming off a three-day bender. As of the present, I am able to walk, so as much as possible I use this ability. I lost my full-time job in two-thousand and twelve and started a daily ritual of walking and at that point was doing between five and seven miles a day. Now? I'm down to three-and-a-half and feeling completely wiped out after. Sure, I may not enter any speed walking tournaments in the near future, (or ever), but the point is that I'm still out there. This seems to be a universal approach by many people who I have met and talked with, but I want to encourage that person who may be looking at a recent appearance of Ataxia or other physical ailment or condition. Our situation will be made a little more manageable if we hit it head on with a smile instead of a frown, and continue to focus and use those strengths or abilities we still have.

#3. Support.
     I cannot accurately describe to you how big of a role this has played in my life or how vital I believe support to be. For the first nine years of my struggle with Ataxia, I faced it with the love and support of family, but I did not know anyone else like me. When I reached out and found a support group, I was amazed, and it really felt good to be with other people who knew my struggles, not because they were sympathizing with me, but because they were living in the same reality as I was. It was an inspiring time for me, and I began to seek out any avenue that I could that would put me in touch with others whose struggle is like mine. I now have friends all over, not just the states, but the world. I can't say for sure why this helps, but somehow it just does. It also is a very encouraging thing to be able to ask a question about your symptoms, or about various medicines, or any other general issue that may come up in your own battle, and receive advice, encouragement, and/or support, sometimes in a humorous way. And the beauty of it all is that there is never a dumb question. Just friendship and unity in the knowledge that we all have had our party crashed by a variation of the same unwanted guest.


     In the beginning, I said that these three things work together. Humor, attitude, and support. You may see it another way, but in my life, pretty much everything can be, and is, reflected by these three.