Well, That Certainly Would Be Helpful.

here is a link to the audio version, in case you :would rather listen to this blog: https://youtu.be/WCZn-m9paqo

It has become very inspiring for me to know, by either talking with some of you, or by reading your posts on numerous Facebook sites, that a lot of you are able to maintain such a positive, and healthy outlook on your life. Despite the challenges that a Neurological disease can bring, many of you refuse to let it dampen who you really are. This motivates me, and serves as a constant source of encouragement for me. If I could have one wish come true it would be that I might be able to visit with each of you, and share with you what you do for me on a daily basis. To all of you who seem to, like me, find yourself constantly quarreling with your body because of a physical condition or disease, I would like to say thank-you for all of your support, friendship, and encouragement. I dedicate this blog to you, and trust that, since there are too many to name, that you will know who you are. Unfortunately though, this kind of positive outlook, and spirit, does not pertain to everyone. Some of the people that I have come into contact with seem to be in a place where they refuse to see anything in a positive light, as if their happiness can only be found within a constant shroud of misery and negativity. My heart goes out to people like this, because they are missing out on so much. I have learned in the past, and continue to remind myself in the present, that I have accepted my SCA, and that nothing will be changed, or gained, by a constant refusal to allow myself to be happy despite life's difficulties.

With that being said, however, there are a few tiny things that would make life a little more pleasant. I hesitate to even mention them, because they are so small. And really, they are such minute things that I can't imagine that they would be a bother to anyone. I will go ahead and mention them, though, and you will see how small and trivial they are......

Just a little bit......

Could slurred speech please be recognized as a second language? Maybe it could be called Cursive-Speech, you know, since Cursive's brief association with that whole writing stint appears to be done now. The title of Cursive is just sitting there! Up on the shelf, no longer being used, and gathering dust so why can't we reassign it to the area of speech. That way I could be bilingual, as Ataxia already seems to come equipped with this ability. I always wanted to speak another language, but I was never really gifted at learning in this area, that and the fact that I was lazy, never wanted to study, and because pointing and grunting were already universally understood. But I'm sure that you know what I mean, some people just seem to be naturals at learning, and picking up a second, third, or fourth language appears to be effortless. There was a day when I wanted to be one of these people, and in my quest to be multi-lingual and a international man of the world, I signed up for German my sophomore year of College. The class was at eight o'clock in the morning, and I'm not sure what possessed me to do this, because I struggled to speak understandable English that early. Anyway, I don't see that adding another speech pattern to the list of recognized world languages to be a big deal. Unless I hear that there are any objections, (and I can't hear anyone speaking up right now), then I am going to go ahead and refer to slurring as Cursive-speech. It just sounds more sophisticated than slurring, which is something you do when you're drunk. I'm not.

I was thinking that a Hobbit-style dwelling might make for a nice one-level home.....until I realized that this would involve bending down and crawling.....I'll leave that for the kids.

I would also find it immensely helpful if my SCA would put just a little more effort into working with me. I mean, really, how hard could this be? It seems like such a small request to me. It's already there, re-shaping my Cerebellum and adding a bunch of weird side effects. It seems to me that it would be a small thing if it could throw in a helpful symptom once in awhile. It would be rather nice when I am explaining my SCA's conditions to people to be able to throw in a positive side effect. I could say something like, "along with poor balance and motor skills, my disease includes a ravenous-appetite that defies all logic, which also comes coupled with the inability to gain weight, or any other adverse side effects to food consumption, and this borders on nothing short of euphoric." I think that it would be a little bit of a boost to Ataxia's reputation as a bully if it would just allow itself to be presented as an Ala Carte Disease. If we could pick and choose from a menu of physical affects that were, say, put in a more positive light. Again, back to the weight-gain, (because it is a big issue for me...get it?). I have struggled all my life, or at least for the last fifty-odd years, with gaining a few extra pounds while at the same time having a sweet tooth. If I could have seen on a menu the ability to eat with some difficulty but never gain weight I would have ordered it. Probably even would have ordered it well-done, I don't know... maybe medium-rare.  I would like to refer to this system not as a disability-menu, but instead as a thisability-menu. Because all side effects would come with a positive ability.

I guess it is all just in how you look at it. I am always on the lookout for small things, the seemingly insignificant common items that will help me see my world in a different light,  or a different way.

This Or That, Either Way I Benefit.

here is a link to the audio version, in case you :would rather listen to this blog: www.youtube.com/watch?v=jXnzSwoAe9k

Before this blog begins I would like to point out that I have added a new feature to my blog page. On the right side, at the top, is a link to translate my writing into another language. I don't know how necessary this is, but thought it was a really nice feature to offer to my readers.  Sorry, it will not improve my writing or make it funnier.....

And now.....

When our kids were little, Melissa and I lived on a eighty-acre Christmas tree farm that is located about fifteen miles from where I currently live. At this residence we had three or four rose bushes planted in front of our deck. Interspersed through out these were miniature wild roses that I had discovered growing in a field beside our home. I dug up some shoots off the main root system, leaving this main system intact, and transplanted these off-shoots to my yard were they did very well. They bloomed with a very pretty, nickle-sized red flower. The native rose bushes were the common variety and put out baseball-size yellow and red blooms. All this beautiful growth was separate from, and in-spite of, any effort on my part. Why do I mention this? Has this blog now become a writing about gardening? Believe me, you DO not want to take any kind of gardening advice from me. I can't even get Moss to grow successfully. Now, at this point, you might be tempted to say something like, "Jason, you must be exaggerating, how hard could it be to grow Moss?" I wish I were only making this up, but no, I'm not...and sadly, it's a true story. A very true story. Melissa and I thought that a nice alternative to grass in our backyard might be some decorative Moss. So, we proceeded to go to a highly respected garden store and purchased three healthy Moss plants. We brought them home, planted them, and gave them plenty of water. And then? Yep, they died. All three of them. They didn't even APPEAR to have put any effort into living. I mean if they just would have given us something....new shoots, would have stayed at least half green...something! No, they just unceremoniously died. Pretty sad when you can't even grow Moss on purpose, especially when you turn around and see robust, and thriving forms of it growing elsewhere in the yard, all of which are native. I guess, in my case, the Moss didn't want to be enslaved by civilization, but instead wanted to retain it's wild, and care-free lifestyle. Anyway, I got off subject. I said all that so that I can tell you the next part of the rose story, because that was the part that I really wanted to tell you about. So, what happened next was that the wild rose, and the domesticated rose co-mingled and made a hybrid rose like I had never seen before or that I have not seen since. I'm almost positive that the introduction of the new species of rose, that I had inadvertently grown, would have made a rather large splash in the world of Botany. If only I would have taken the time, but I didn't, and those roses are gone now. To this day I think of that hybrid rose from years ago and wish I wouldn't have let that opportunity slip by me so easily. And that is exactly why I will not let this next situation slip by me without mentioning it.

Before my very eyes there is an outside form of Ataxia that is co-mingling with my current Spinocerebellar Ataxia, and is forming a unique variety. The only problem that I am facing right now is that I have two different names for this current phenomenon, and a vastly different definition to go along with each individual name. I will, however,proceed to spell them out for you and let you be the ones to decide. The first new breed of Ataxia is what I refer to as Sympathy-Ataxia. This form of Ataxia works in much the same way as the sympathy pains that I had for my wife each time that she was pregnant with our three children. I distinctly remember that with our first child, I was working at a Retirement Center as the Lead Cook/Assistant Manager. Melissa was about eight and a half months pregnant, and I was on one of my breaks at work. I accidentally spilled my cup of water, to which I immediately shouted, "My water just broke!" I then began to experience stomach cramps. I also remember having weird cravings for obscure food combinations, although that one couldn't technically be described as sympathy pains, as Melissa never really had any of these off-the-wall food cravings. That, and because our youngest child is eighteen, about to enter College, and my weird food cravings are still with me.

I don't know whether or not it is sympathy towards my Ataxia or not, but I have begun to take notice of the fact that my wife and daughters are beginning to exhibit signs of having trouble. They have started to drop things, and spill food and drink on themselves while eating. At first I was tempted to think that they were doing this as a way of showing me what I look like when I eat. This was funny to me, and I was going to reply that I appreciated the humor, but I was aware of what I looked like. Then, as the frequency of these things kept happening to them, I realized that they were not just clowning around, but that all the fumble-age, drop-age, and spill-age were real. This could be chalked up to sympathy, or it could be explained by the second name, a condition that I have come to refer to as Osmosis Ataxia.

Through the years that Melissa and I have been married, we have absorbed some of each other's traits, habits, and sense of humor, humor that is defined as having trace amounts of observation, irony, a sense of the physical prat fall, added to a large amount of quick-witted sarcasm. We also quite often know what the other is thinking, or what the other will say in a wide range of situations. Melissa has got me pegged a little better in this department. Although, I have to say that I have made it easier for her by repeating the same stupid quips, jokes, and comments over the years. Repeating myself is more than likely a product of my faulty short-term memory. I can't really recall, but I think I may have recently written a blog about that. You should definitely feel free to go back and re-read the blog to check and see if I am remembering correctly. So, back to osmosis, is this what is happening? Does my SCA have an element of life-by-example? Does Ataxia have an affect like secondhand cigarette smoke? Traits that can be adsorbed by others'? I still am not sure which definition is the correct one, sympathy or osmosis. Which one do you think is more likely?

Regardless of which one it is though, there is a large benefit that has come to my life because of my current Neurological situation. Hand-holding. Lot's of hand-holding, and other physical contact. This realization came to me the other day when my youngest daughter, my wife, and myself took a trip for the day to the beach. All day long, Melissa was there to hold my hand and safely guide me. And whenever she wasn't, my daughter was, who did not hesitate to hold my hand and help me down a small staircase, or step of a curb without the face-plant finishing move. There were a few times when we were on a narrow path and had to proceed in a single file. Melissa would be in front, reaching back and taking my hand, and Jessica would be behind me, reaching forward to steady me. I was very thankful, and it reminded me again that I cannot possibly do this alone.

I urge you to reach out. To let someone take your hand and guide you. Let someone show you the way to safety.....

.......then they can be assimilated through sympathy or osmosis!:-)

It may look like I am leaning on the tractor for support....but I wanted it to appear this way, and in reality I am keeping the tractor from toppling over! This used to be my summer job, and I don't want to brag....but yeah, I was pretty good.

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.

Wham, Kablam, And Kerslam!

here is a link to the audio version, in case you would rather listen to this blog:https://youtu.be/hnQw71fHidU

Life with Ataxia, for me, can often seem to be a life lived in the middle of an anything-goes, let's-pick-on-the-little-guy, free-for-all, target practice....just like the ones that I experienced during my childhood. It was not uncommon to find myself being bombarded by pine-cones, water balloons, rocks, little green apples, handfuls of berries, dirt clods, dried cow pies, rubber bands, dirty underwear, golf balls, or shoes. A time when any one of these items, a combination of these, or any other fly-worthy object, would approach my innocent self at a high velocity (for I had done NOTHING to provoke this kind of response). I would just be walking along, COMPLETELY minding my own business, not bothering anyone, when suddenly wham! Something would fly out of the blue and dramatically collide with my person, often in a very painful way. Usually I would know better than to return fire because the outcome of trying to retaliate would only cause the rain of terror to increase in speed, volume, and accuracy. I spent a lot of time in my childhood playing Bob-n-Weave. It was not a game I found to be enjoyable. I even had a pitchfork thrown at me once, (read Once, I Was A Child, blog number 31, for the whole story).

I compare my life with Ataxia like to a game of Bob-n-Weave because there are times when I can see myself, placed right back in my younger days, with foreign objects flying at me from every which-way, seemingly from out of the blue. Only, now the items are not things from my childhood, like dodge-balls, or dirt-clods. These were objects that were thrown at me by someone else. Never once were my injuries from air-born foreign objects self-inflicted, nor do I remember ever being tempted for them to be. And even though I may not be tempted now.....no, let me rephrase that, I am definitely not tempted in any way, but my body apparently has different ideas. I might be sleeping peacefully, when out of nowhere, wham! A kamikaze leg cramp will decide that it is zero hour, and time to strike. I might be drinking my morning coffee, and suddenly, just like that, kablam! My throat decides to close up shop, puts up the sign that reads, "Be Back In Ten Minutes", and goes on a break. I know my throat doesn't smoke, so maybe it went to take a coffee break? Wouldn't THAT be ironic. Or, I might be walking on flat ground, when my legs will just decide that they have had enough of my feet, always having to lift them up. "We're tired of always being the ones to carry their weight, why can't they take care of themselves for a while?" (By the way, this really is how my legs talk, I heard them once....it was the same day I heard my money say goodbye). Anyway, because the legs do this, the feet will be left on their own to move, and since they can't pull themselves up by their own bootstraps, they are left to inch along the ground. The point being that, kerslam! I find myself shuffling, lurching, and finally falling.

Sometimes the current game of Ataxian Bob-n-weave reminds me of a time in College when a few friends and I found ourselves in a faculty member's garage. Don't worry, there was nothing nefarious going on. One of the guys that I was hanging out with that day was dating a girl whose parents lived in the house that we were messing around in. We actually spent a lot of time there, eating their food, and watching their television. They were like second parents to me and didn't mind us hanging out there at all. Fact was they encouraged us, as was evidenced by their frequent question of,  "Why do you guys always want to come here?". See what I mean? They wanted us there. So anyway, back to the story, one day a few of us found ourselves in their garage. One guy finds a loaded air rifle, pumps it ten or eleven times, and fires it at a metal shelf. At this point, you need to know that the kid that shot the gun was currently a 4.0 student and at College on a scholarship. Well, the rest of us quickly went into the universal Bob-n-weave stance, because the speeding BB had now ricocheted off the metal cabinet and was bouncing around, and none of us wanted to get hit, (apparently they all knew the game of Bob-n Weave too...they must have played as kids, also). We were in a single car garage so there really wasn't many places to hide. After the initial shock wore off, (two to three seconds), we laughed, decided it was fun, and did it again. It was either this, or do some homework, so....

I say that my present condition reminds me of that stupid kid back in that single car garage. It reminds me because.....well.....because that WAS me, and because not only do I still do a version of the Ol' Bob-n-weave, but I can now empathize with the BB that was spit out of the barrel of that gun, only to smack into a hard-metal shelf, and then to spend the rest of it's short travels bouncing, and pinging off other surfaces. The BB that never got to be a part of the decision making process concerning it's movements, (I would tell people that I have B-B-Ataxia, but then it would sound like I am stuttering). Whenever I stumble, and can't seem to stop the forward motion because there seems to be an unseen force of air pushing me, I see my old friend from College days, as he gleefully and methodically pumps that air rifle.

Another story from my childhood that reminds me of my current situation happened when I was somewhere around the age of four or five, and my two older brothers would have been eight and nine. I don't really remember where we were going to go as a family, but Mom had dressed us three boys in matching sailor's suits. She had gone to great lengths to clean us all up and dress us in the white outfits. All she asked of my brothers and I was that we stay clean while she finished getting ready, and we waited for my Dad to get home. So we promptly headed innocently outside to play, where an argument quickly ensued between my brothers. Things quickly escalated to the oldest brother throwing dried, (and some not so dried) , cow-pies at the other brother, who was returning throw-for-throw with dirt-clods. I somehow ended up on the brother's side who was getting hit with cow-dung, and even though I had a wood pole to stand behind for protection, managed to get hit numerous times. We were a complete mess by the time the fight was over. My brothers then decided, that since I was the youngest and couldn't resist their combined force of will, that I should be the one to calmly explain what happened to our Mom. I do remember walking into the house, seeing the look of sheer, unbridled delight in my Mom's face, and saying, "Bob and Jon did it."Beyond that I truly don't recall anymore details. Major trauma at that point may have something to do with this. I just can't imagine that my Dad was very pleased when he came home and Mom told him what his three darling little boys' latest adventure had brought about.

I relate this story to my Ataxia, in much the same way as I do the story of the Air Rifle. Things get thrown at me, and even though I may be an innocent bystander, Ataxia is always there to inflict it's force of will on me. BUT like I have said before, AND will say again...Ataxia does not dictate who I am, what I think, touch or dampen my Spirit. These are just snapshots of memories from a past that made me who I am today. I will never hand my disability the victory. I will never surrender. Ataxia may win a few battles, but will never win the war. Be strong, my friends.

No, Really....I Meant To Do That

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

I can remember quite vividly that there was a time when I did exactly what I meant to do. I know what you may be thinking at this point, but really, I am not making this up. I would make a decision to execute a certain task and actually get it done, most of the time it would even be done correctly. Now, stay with me here, because I know this next statement may seem to be stretching it just a little bit, BUT there were even times when I even acted without the need for any pre-meditation, or forethought, I guess you could say on pure reflex, or instinct. A-not-so-distant time when I could walk straight without appearing as if I were trying out for a position on the latest dance-related reality show, or to be an extra in a earthquake disaster movie. A time when I could chew and swallow without the need to update my Life Insurance Policy beforehand, when I could descend stairs or step off a curb without the need to first anchor a repelling rope, prior to my descent down the four or five inch sheer cement wall. And, yes, even a time when I could mix myself a simple tuna spread for lunch without first having the need to rent a small cement mixer to contain the mess made from mixing a 4 ounce can of fish with mayonnaise. There were so many simple things that I did in my life that I never had to think about, or that I ever needed to stop and contemplate beforehand.

BUT, these are just a few of the struggles, or challenges, that are known by most of us who are currently living within the reality of Ataxia, or another form of physical handicap. Examples, or the memories from the past that can quickly spiral down into negativity, if we allow ourselves to dwell on them. However, if you know me or read my blogs, you know that I try not to go negative.....and I really really try to stay away from any "spiraling" these days, emotionally OR physically! In fact the word spiraling reminds me of tossing around a football, which in turn reminds me of younger days spent playing football. I would either play one-on-one with my big brother, (but really for me this game was closer in resemblance to a game that should be called Cream-ball) ,with neighborhood kids at the summer picnics,( again, also known as Cream-ball, as all the older and bigger kids from the neighborhood always seemed to whined up on the same team and all the younger and weaker kids would make up the opposing team), or I'd play a game with friends at sleepovers and birthday parties. Now days the only spiraling I do is on a team of one as I fall into my easy chair, (which, sadly, at times can also be called Cream-ball).

I don't know who this guy was....Melissa was trying to get a picture of the little Windmill and he just wandered right in!

Now that I have been struggling with my SCA for several years, it occurs to me that, what "I mean to do", is currently my new " Of course I meant to do that". That it is no longer about those things that I used to do without thinking, back before my body pulled a Benedict Arnold and betrayed me. I now try to think of everyday occurrences as being things which I really had meant to do to begin with. I meant to waddle like a duck and bang my shin into the furniture. I meant to poke myself in the eye when I shampooed my hair. I meant to do a human impression of a pinball when I walked through the crowded store, and I certainly MEANT to slur my words and appear as if I am under the influence.

So, okay, I am not being completely serious. I mean, come on, who enjoys being referred to as having the waddle of a duck? Alright, alright, I'll be serious. I know how frustrating it can be, how hurtful it is to be misunderstood. Let's face it friends, most of the time the general public does not know or even begin to have a understanding of what it is like to be betrayed by your own body in this way. I had never heard of Ataxia before my diagnosis. We really need to change this, and I am reminding myself here just as much as any of you when I say that we need to stop allowing the past to depress us and live in the new normal. Everyday brings some kind of new challenge into my life, and it can be a struggle for me to not wish for the past. When life wasn't the constant avoidance of a life-altering injury or huge pain in the..... But it is a choice that I make. I choose the positive instead of the negative. I am a much happier person because I made that choice, and invite you to join me.

Plus, you have to admit," I meant to do that", is a great way to approach every day struggles and frustrations. I find that if I set out right from the beginning, and mean to drop a lid 4 or 5 times before actually getting it to go back on a bottle, than I feel better knowing that I've successfully accomplished another goal that I've set fr myself in my daily routine! Go ahead...try it.....dive right in, my friends.