Uh, Yeah....I'm Gonna Need You To Repeat That.

here is a link to the audio version, in case you :would rather listen to this blog: www.youtube.com/watch?v=9KQ1vIMzPDA

Over the course of history, man's intrinsic gift to effectively listen has come to be known by several different definitions. Some have come to label the ability to hear as, "selective-hearing". Others' have defined it as, "having too much wax in your ears". Both of these highly technical definitions work in my case, but I would also like to add a third possibility, what I have come to refer to as, "slurred-hearing".  As of this current writing, my speech has not been greatly affected. But how would you really know if that's true, since your reading my words and not listening to them? You will just have to trust me and take my word-for-it, or in this case, my write-for-it. By slurred-hearing, I mean that one of the current affects of my SCA that has developed over the last several years is my inability to hear myself correctly. More specifically, my body's lack of ability to hear internal mandates clearly. Random shuffling of the feet is often caused because of this occasional slurring. A constant string of orders to the legs to pick up the feet during the engagement of walking will in general be heard correctly, until suddenly, when the legs' hearing process will become slurred, and they will hear something along the lines of, "Okay, listen up! Because as of this moment we are going ice skating people, so start skimming the ground like you mean it." Sometimes the best way to keep them out of trouble is to just find a nice bench and give them some time off for behavior, (sometimes it's good, sometimes it's bad).

All three of the former definitions can be assigned to me, but not every one of those definitions can be accurately applied to every member of my body. Do I really think that my legs might have wax in their ears? No, probably not, BUT I do think that they, besides their slurred-hearing, have also exhibited from time to time some very selective hearing. I clearly will give them a direct order that has come straight out of headquarters, and they will ignore it. Of course, they think that I don't notice, and that they are getting away with this, as they whistle and attempt to nonchalantly walk away. But the headquarters have eyes and are always watching. Except at night that is, when the office closes and everyone goes home for six or seven hours. But, again, because they were selectively-listening, and didn't hear the end of the day call, occasionally the legs will attempt a breakout during these quiet times by making a sudden and violent move, I guess towards what they perceive to be freedom. This usually sets off a painful proximity alarm and wakes everyone in the system up. Searchlights snap on and begin crisscrossing the ground like there has been a seriously massive breach in the containment system and all escaped members need to be found, and found quickly. The headquarters instantly becomes a flourish of confused activity, as everyone involved is trying to shake the cobwebs out of their own headquarters, and to resolve the crises as quickly as possible so that the main office can be closed again. No matter how quickly this may happen, though, the damage has already been done, and although the lights at the main office have been turned off again, and everyone has returned to their homes, all does not return to the peaceful quiet of before. There will usually be a mouse, a random thought, or a situation that is currently happening at the executive level, that will choose this time to begin running and bouncing around, successfully keeping the headquarters abuzz with activity. All because of that darn selective hearing.

My legs may not have wax in their ears, but my ears apparently get wax in THEIR ears now and again. I don't know how else I can explain why my hands don't always seem to respond well to my ceaselessly-positive self-talk. This would seem to be the explanation, as the only middle-man between the sound coming out of my mouth, and my hands, are the ears where the sound enters back into the system, and then travels to the intended appendages. The wax in my ears will effectively stop the forward progression of any verbal commands. However, sometimes this backfires, sometimes the commands are internally stored there until a successful un-blockage can be accomplished, usually by way of the Q-tip. The saved message will then surge quickly through the system, causing the hands to fly up in what appears to be a sudden random and completely unprovoked manner. If this happens to you, as it does to me, all I can say is that the observation of this phenomenon by others, and their interpretation of this event, will greatly depend on the location that you are in when this whole thing goes down. Of course, it does seem odd to me that anyone would choose to clean their ears anywhere other than the bathroom, but hey, I am not here to judge, and you just go right ahead and clean where you gotta clean!

I am standing for your right to free clean, er...I mean free speech.

So, at this point I have established that the act of "hearing" myself is more or less a hit-and-miss proposition, a process that I am still working on. Now I would like to move on to a related topic, one that for me has come to be known as,"what?' For most people, this would be more commonly known as active-listening.  I try, I really do try, but between the faulty short-term memory that I admitted having in my last blog, the selective-hearing, earwax, and the slurring when I hear, I don't stand a chance! That doesn't mean that I don't keep trying though! This means that not only do I have to hear what I am trying to tell myself, but I have to act on that information. I have learned this the hard way and want my experience to save you from potentially making the same mistake. If I approach uneven ground, then a voice of reason tells me that I should not attempt to walk there. If I don't immediately stop, but hesitate to act, and say, "what?", then I am probably already taking a step ahead. This usually never ends well, and this could have been avoided by actively listening to myself.  Do you see what I mean? Were you even listening? What?

Short-Offering Buffet

here is a link to the audio version, in case you would rather listen to this blog:
www.youtube.com/watch?v=4NwwIS9r6fk


Besides possibly being a really cool name for a band, Short-Offering Buffet is just another way to say leftover night. This is a direct reference to a past blog, number 43, which was titled Leftovers, No Matter How They're Reheated. It is time again to clean out my fridge, and offer to you the bits and pieces that have been gathering dust in my mind. Hopefully you will find something here that you will like (but if not we always have frozen pizza available).

1. Losing My, Uh....?Dealing With A loss Of My, Uh...?Oh, You Get The Point!

At a tender, and yet slightly riddled and marbled with fat, age of fifty I am now mature enough to admit that I have never had what most people would refer to as a impressively-commanding handle on short term memory. Oh sure, I can easily remember all the lyrics to songs and the band members that played, and sang  those popular hits when I was just a kid. But ask me what I had for dinner last night? Uhhhhhh..... give me a minute.... Oh shoot,I should know this one.... (five minutes later, and after consulting with wife)..... Oh yeah, now I remember! And then she reminds me that I was the one who made the dinner.  See what I mean? Not very impressive. But this pales in comparison to the short term memory that my body seems to have lately. I was thinking about this in the shower this morning when my legs started to wobble the moment my eyes were closed so that I could rinse my hair out. And I distinctly remember thinking,  " Really guys? Really? We just went through this exact routine yesterday!" (Side note: You may be tempted to be impressed by my power of recall and memory of the events in the shower, but remember, they happened merely minutes before I wrote this. In fact, I thought of this whole memory idea while taking a shower, and basically had to write it down as soon as I was dry, lest I forget. I'm serious, don't laugh, if I would have waited until I was completely done, I would have probably remembered that I had been thinking about SOMETHING a few moments ago. Then I would have convinced myself that I had been thinking about possible flooring options for our house. Hey, I've done it before). Anyway, my point is that lately my body is seeming to have lapses in recall. My fingers will, on one day, remember how to tie a shoe or to grip a fork. But the next day? It feels a lot like it is the first time all over again. The seventies hit, "Feels Like The First Time", by Foreigner could become my new Ataxian theme song.

2. It All Comes A'Tumblin Down.

If I could have gotten a head's up, or even received a clue, when I was three or four that one day I would have Ataxia, I could have begun laying the ground work for a spectacular pay-off later. Just imagine with me for a moment, I could have talked my father into letting me use his five acres of land. Every week I could have set up ten thousand Dominoes, in anticipation for the day that I would stumble into them and set a world record. I mean, ten thousand a week? Until I was thirty-eight? That's....uh, let's see... there are forty-eight weeks in a year, sixteen tablespoons in a cup...uh....well, it's a lot, and I would have been a champion Domino-type person, (or whatever you call a person whose major achievement was setting up Dominoes all his life). Of course, had I actually done this, I would have needed a clean-up crew to pick up all the fallen tiles. I set it all up pre-ataxia and can't be expected to do all the clean up post-ataxia, as I can't really bend over and pick up small things without doing a nose dive, or packing a suitcase in anticipation of an extended trip. Besides, I did the hard part by stumbling into the stack and getting the ball rolling, or Dominoes toppling, as it were. But, as close to reality as that little musing is... it didn't happen. It could have, but....it didn't. However, in the present I DO think of Dominoes every time I reach into a cupboard, attempt to put something away, or reach into the refrigerator. I am not making this up when I say that sometimes, what should have taken me seconds, now takes me minutes because of all the things that tumble out of the cupboard or that fall off of the counter when I reach for something else. When our kids were small, Melissa and I had built up a rather large collection of plastic cups, because plastic is very kid friendly, as opposed to glass. We still have some of those cups, and I am glad that we do, because I've discovered that these are also Ataxia-friendly. Just think of what would happen if Dominoes were glass. They would literally be one-use toys. Thanks to the spectacular invention that plastic cups are, the Domino-style action continues.

3. And Speaking Of Perspective.....

One of my goals throughout the day is to have the appearance of control, (by the way, I believe that the perspective we may have of ourselves to be a natural part of the goals that we set for ourselves, and this current writing is meant to be a direct extension of my last blog, concerning goals). When out in public, and it appears as if I am intoxicated, I would rather people imagine that there may be another reason for my unsteady gait, rather than one of alcohol. Something simple, say, like that I am really only practicing at being publicly intoxicated because I landed a part in the local theater as the town drunk and I really want to nail it. Although, that seems to be rather specific, and I can't imagine where they would have gotten that idea in the first place. There's got to be an obvious answer, like maybe I told them, or something simple like that. I don't really recall, I have bad short-term memory, remember? Maybe you don't, I don't know, but the point is that the perspective you have of yourself cannot be based on other people's preconceived notions. I am not referring to family, friends, and loved ones who can speak positively into our lives. We need to be an encouragement for each other, and speak truth into each others' lives. The support of others' can be very helpful, and in a lot of ways, make all the difference. What I am saying is that the perspectives, or the false conclusions that people jump to that do not know or understand the handicap that affects us, are usually NOT helpful. These can hurt, or cause frustration and anger, which is what typically happens.  Our perspective needs to be based on who we are, and our daily goals need to reflect this. It is like I stated in my former blog, that I believe we need to accept our limitations, give ourselves permission to be who we are within our disability, and to set realistic goals for ourselves that are based on an accurate perspective of who we are. Having a positive perspective, rather than a negative one, is possible within this disease.

Ataxia, just like other handicaps or circumstances in life, is a matter of perspective.

4. Peeking  Through The Willows.

Now that I have shared with you my thoughts on goals, and perspective, I would like to move on to a subject that I call Peeking Through The Willows. As a person who found himself suddenly staring into the reality of a diagnosis of Spinocerebellar Ataxia, like many of you, I felt alone and now somewhat separated. But also like many of you, I discovered after a time that this was not a true perspective. The truth was that there was a support group that I could join. There were thousands of people world-wide that I could reach out to through social media, and connect with. They were from all walks of life, at different places and stages as they dealt with their handicap, and they brought much needed understanding, friendship, and support into my life. They began to teach me by the examples in their own lives what it was to live moment-by-moment with a handicap. Why do I call this Peeking Through The Willows? It is because I strongly believe that, as we peek into other peoples' lives, we can find the strength within our own handicap to maintain a positive perspective of who we are, and to set correct and helpful goals for ourselves.

Well my friends, I truly hope that there was something presented here that you found palatable. I am sending all of you thoughts of strength, and pray that you have a great day!

A Goal To Reach My Daily Goals.

here is a link to the audio version, in case you would rather listen to this blog:https://youtu.be/lAD_BeV_4Gc
In my constant, and unwavering negotiations with Ataxia, I find that if I set a list of daily goals for myself that these are what help me get through the day successfully. Of course it would make it much more effortless to reach my daily goals, and believe me I am sorely tempted, to just simply not have any. This way I would always be victorious, and never have to worry about letting myself down. Another word for this type of goal-setting would be lazy. I do, however, find that I have those days when doing as little as possible because of fatigue, or because the risk of injury to myself if I push it is a fraction higher than my usual plateau. Even though I try to limit these times, during these days I still have to eat, breathe, and try to walk on the razor's edge to the bathroom, so the elements of risk and the possibilities of injury are always present. And so with this in mind, I continue to set short-range goals that take me in small but safe steps, (fingers crossed) , through the day. I will share them with you in the event that, you know, if someone out there IS struggling with the concept of setting goals for themselves, that the ones I have set for myself might serve as an inspiration.

Nothing helps me to attain a better nights sleep, nor that infuses a sense of well-being, and accomplishment when I lay my weary body down at night, like the feeling of knowing that I have managed to reach all the goals that I have set for myself that day. In fact just the act of laying down is the realization of one of those goals. It is the last, and the most important, goal of the day. If I cannot achieve any other goal during the day, just having a nightly reunion with my bed is enough. But I continue to strive, and to do my best, to achieve the positive agenda that I have set for myself.

I start the day off, in a very similar fashion I suspect that most of you do, by waking up. Right away I start my day off on a positive note, as I have already accomplished the first goal that I have set for myself. Although, there are some variables in the attaining of this goal, as I never know for sure what state I'll wake up in. I don't mean State with a capital S, (I am not a member of a traveling circus, nor am I some kind of vagabond), but I mean state with a small s, or relating to my waking physical condition. I guess to simplify this particular goal, and so as to not base it on a wide range of fluctuations, the accomplishment of the goal of waking up should rather be based on the simple fact of whether or not I'm still breathing.

So, up to the current date, I have successfully nailed the first goal by simply opening my eyes, and from there I move on to the second goal...coffee. It really is as easy as that. It is a simple thing, but one that I can not over-stress the importance of. I stumble out to the kitchen and either I or Melissa will fill our large travel mugs. This goal is actually two-part, with the first part being completed the night before, and which plays a integral part in the successful achievement of the second part, which is the setting of the automatic timer on the coffee pot. This insures that the coffee will be ready and waiting. We use the buddy-system here to try and minimize the potential for true disaster. In the morning we also trade off filling our cups, as we both have a need to enjoy as much coffee as we can get into our systems' without actually drowning ourselves. Once this second goal is achieved I then advance to the third goal, which I just previously touched on. The triumphant avoidance of an accidental drowning by highly-caffeinated hot water. This is a very important goal to me and I seek to fulfill it while being engaged in the midst of goal number four. My easy chair. Oh yes, my easy chair, or as I will refer to it here, the horizontal-slumber mate. I spend a lot of time in the reclined position, studying the back of my eyelids as if I am trying to find some ancient writing or the charcoal pictures of a buffalo hunt etched there. I haven't found any yet, but I promise you my friends that I will not rest (did you SEE that one coming?) until I do. At this point in the morning, however, I do not avail myself of the horizontal-slumber mate's reclining charms, rather the highly seductive sprawled-back position serves as a precursor to a successful re-entry into bed at the end of the day.

About six months ago a lady from one of the support groups that I lead called me. She was very overwhelmed and distressed to the point of tears. She was looking around her house and seeing all the household chores that in the past had come so easy for her, but that were now a struggle. She compared what she used to be able to do and accomplish during the day with the reality of what she is currently able to do, and the thought was very frustrating and depressing. On top of this, her body was now reacting to the stress by shutting down. Most of us can relate to these feelings from time to time, as many of us have found ourselves in that dark spot. I know I have, which is the first thing that I told her. I also told her that it is a place that I have not allowed myself to stay in, and I strongly urged her also, to not allow herself to dwell there for very long.

How does this relate to the setting of daily goals? Because the friend that I just mentioned was not only comparing the past to the present, but was looking at her day as one large task, and because she was allowing herself to do so, was feeling completely overwhelmed, and was left to wonder how she would get it all done with a body that was becoming ever-increasingly uncooperative. I told her to pick just one or two things that needed to be done, and if that is all she could do, she needed to be okay with stopping there and resting. She needed to stop focusing on what she didn't get done, but on what she DID get accomplished, and to just let the other things go until tomorrow when she could go at them again with a fresh start. I told her that what I have found to be true in my own life is that a positive daily attitude starts when I am able to give myself permission to be me. Note here, that I did not say Ataxia is an excuse to take life easy, but I believe that we have to give ourselves permission to be who we are. I told her that it is a day-by-day situation as we learn to work with, and around our Ataxia. WE do have a handicap, and because of this fact, the everyday tasks, and things of life that come easy for others', and that used to come easier for us, are now a challenge. So, we have to set realistic goals for ourselves and stick to them. We have to be okay with taking smaller steps. You may not like it, but I very strongly believe that you will not be happy until you give yourself permission to understand your limitations, to engage them head-on, and to find ways to work with them, around those them, and despite them.

She knew these things, and just simply needed someone to shine a light into her pit of gloom, to reach a hand down, and to help her climb out. We all need this at times in this life, and is why support is so important, my friends. Because in those moments we need to know that we are not alone in our struggle.

Beyond my morning coffee lies a day that I could completely fill up with a seemingly endless list of chores, tasks, and responsibilities. I have made it one of my daily goals to just simply do a few things everyday, and I find that by the end of the week I have been able to accomplish just about everything. Everyone of us is different in how we may choose to handle our situation, but with MY daily Ataxian shadow, seeing and handling household chores in small chunks is a goal-system that works well for me. AND...it makes the reunion with my bed every night that much sweeter.