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.