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.

Seriously?

here is a link to the audio version, in case you would rather listen to this blog: https://www.youtube.com/watch?v=fN3p7b0x8co

     I am taking a different approach from the previous blogs this time around. In the past, I have taken a humorous look at my history and the realities of the future. Although they were all true, I did on occasion take a writer's liberty and expand a few of the details while keeping the facts about my daily struggles one-hundred percent accurate; I made nothing up. And all of it has been incredibly easy for me to write. But where I go now is not.

     You see, my friends, I am scared that what I say will be taken wrong. A superb and experienced writer can take you places and make you feel emotions just by the words they use, or by merely describing a setting in a detailed way or by how a phrase is crafted. But what is lost, in my opinion, through the written word is human contact. You cannot look into the eyes of the writer or hear their tone of voice. Again, a good writer can infuse those qualities in their writing, but only to a limited degree. Often misunderstandings and frustrations are due solely to the misinterpreting of someone else's writing. This is what I fear here....because the plain and simple truth is that most of us filter what we read through our own experiences, prejudices, and opinions. This is not always a bad thing, but I mention it as an explanation as to why I am nervous about the following:

     If you know me or have paid attention to my writing, then you know that I joke about my Ataxia, but that the real truth is that I detest it. I honestly believe no one should have to suffer with it, but since we do, we all are deserving of a cure. However, those who know me also know that I look for the gold nuggets in my life. This article is about sharing the wealth I've found. 

     Ataxia helped to save me. It refocused a life that had become so busy it was only about me. What I fear is that someone will read, or hear, that last sentence and ask," did he just say that he likes Ataxia, that he appreciates having a crippling Neurological condition"? This is what I"m talking about. No, I definitely don't like Ataxia or having something wrong. I don't find any enjoyment by being physically limited at every turn. I don't like what my world has become, and I don't like what it is doing to others.

     Which brings me to my first nugget....which is other people. If it weren't for my Ataxia, I never would have met the incredible people who I now call friends. Before I was diagnosed, I had not even heard of this monster called Ataxia. But through the support group, I attend that is filled with super people to the social sites on Facebook, I have found that this Neurological....thing can be and is a source for bringing people together in friendships, love, laughter, and support. We share advice and similar experiences that bind us though we are separated by hundreds or thousands of miles. If I have to have Ataxia, then this is where I want to be.

     Another positive for me is my volunteer work for Hospice. I only started this AFTER losing my full-time job in May of 2012. Right now it is sporadic, but when I am with someone, I feel alive because I see them come alive again. 90-year-old men tell me stories from when they were 18, or stories about the war they were in, or stories about their first romance. I love it. True, it doesn't always go that way but being there for someone else is rewarding, and I wish it wouldn't have taken me so long to figure that out.

     I have also found my writing to be very fulfilling. Over the years I dabbled here and there but never took or had the time to do anything like posting a weekly blog. It started as simple therapy for myself, and it was my dear wife who encouraged me. It has become very satisfying for me, and I love the feel of sitting in front of a keyboard and turning my fingers loose. I don't even know what they are up to sometimes or what they'll write, but I'm always pleased with the result, although they could work a little more on their accuracy and spelling.

     And last, but the most critical and shiniest nugget I've found, is Melissa. I have talked about her before and just referred to her regarding my writing. I mention her because I believe that I entered a marriage covenant when I took my vows with her twenty-five years ago. I also believe that my Ataxia has brought us closer together. No one in this life knows me better than my wife and this, I am convinced, is and always was, the way it was intended to be. She is also my best friend, and as I go forward from here, there is no one I would rather have beside me. Believe it. 

     Mentioning my wife leads me to the final bit that I want to share. Melissa and I celebrated our twenty-fifth anniversary on the fourteenth this month and are heading to Maui, Hawaii for a vacation. At this point, I am trying to decide how to continue with my blog when I get back. I have definitely been running an active Ataxia-based theme and how it works in my everyday life. I would prefer this topic but at the same time realize that the subject is limited lest I start repeating myself. As I don't have Alzheimer's yet and don't  have a desire to rush anything, I may choose to move on to another subject. We'll see.....Until then, I want to encourage you all to dig for gold in your own life. And please let me know if I can be of any help,( I own a shovel).

Without A Trace

Here is the audio version of this blog, in case you would like to  listen to it instead: https://www.youtube.com/watch?v=fEaGSCIogWM

   When I was a kid, there was a show on television titled Kung Fu starring David Carradine. Probably the only thing that remains in my memory to this day from that show is the classic line, " Ah Grasshopper, when you can walk the rice paper without leaving a trace you will have learned." All I can say to that is...it's a very fortunate thing that Grasshopper didn't have Ataxia. I can't even walk the ice cube tray four steps to the freezer without leaving a trace, and we don't have rice-paper in our kitchen, we have linoleum.

   I get caught up in this loopy time-continuum thing and can't ever seem to get a full tray into the freezer. I fill it at the sink, take the four steps to the freezer, and have to turn around and go back to the sink to refill it because when I get to the freezer, I see that some of the water has sloshed out and the tray is now only half full. After several of these round trips, I declare, that, heck it's good enough, (my home repair motto), and move on, (or stumble on).

   It's not that I am comparing myself to the kung fu student, in fact, if I were to compare myself to any fictional character it would probably be Hansel of Hansel and Gretel fame. Unlike Hansel though, who dropped breadcrumbs on purpose, (I'd guess they weren't gluten-free either), I leave food trails like a slug leaves a slimy trail, (the thanks goes again to Ataxia). The slug does this...not because it chooses...but because that's merely who it is. The purpose that lies behind leaving a trail is the same as the kids in the forest, though. If I happened to get lost wandering around in someone's backyard while at a neighborhood barbecue, I could then retrace my steps by following the breadcrumbs/ baked beans/flakes of chicken/shards of a jello mold. That is of course unless there aren't any little dogs our birds who have gotten wind of the free buffet and are erasing my tracks as fast as I lay them.

   I used to enjoy being able to sneak into the kitchen and get a snack without alerting everyone in the house or the next door neighbors. In and out without a trace, and I could enjoy that second or eighth cookie without tripping the alarm. Now I bang into everything, drop most stuff multiple times, and in general cause such a calamity that it would have been quieter to shout, "I'm going to be a pig and have a second bowl of ice cream!". Sigh, what I was hoping would be a simple litigation has now turned into a class action. Everyone is involved, kids start yelling that it's only fair that if dad is getting more dessert than they should be able to have more. The fact that I am an adult who worked for the money to buy the ice cream, and that they are living off welfare, (their mom and I), seems to have alluded them. Well, at least the family knows where I am. I suppose that making so much noise comes in particularly useful if I ever get lost. If there isn't a food trail that they can follow, then they can silently listen for a few seconds, and I'm sure they'll hear me stumbling into and knocking things over. It's like wearing a cowbell around my neck.

    My Neurologist never warned me about this, and there seems to be a close resemblance here to entering into a contract but never having taken the time to read the fine print. Something written there will inevitably show itself after a while and sink its claws into your back. I am finding this to be my experience with Ataxia. There was not full discloser from the Doctor at the time of my diagnoses and now all that "fine print" is showing up, and I'm wondering if there's any way to get out from under this contract. Forget the original starting balance, my body is struggling just to make the monthly interest payments, and the sometimes-nice-but-sometimes racketeer known as life will occasionally send over some muscle-head to give me a friendly reminder. Usually by giving me a little nudge, so I lose my balance when the risk of injury is the highest, like on stairs or stepping off a curb or sometimes while only walking on flat ground.

   Most times I find myself thinking that if I were able to go back to the moment when the Neurological Specialist handed me the diagnosis of Ataxia, I would have been inclined to ask if life's pleasant little surprise came with a gift receipt because I think I'd like to return it. It's too big, too small, the wrong size, makes me look fat, the color doesn't match my eyes or hair, doesn't match my shoes, or doesn't go with anything in my closet. It doesn't matter what the excuse is, I just want to return it, thanks for thinking of me, though, but instead, could you think of me the next time you have money to give away?  (This is the way I talk to life in case you were wondering).

    And so life goes on, and I continue to imagine that I'm a black-clad ninja, able to float in and out of situations without ever having alerted anyone or leaving a trace. But that's not reality; instead, it's just my imagination. In fact, I'm a denim-clad bull in a china shop. You don't have to be able to see me, just follow the sound of the breaking glass.

Here is a link to a talk I did on 1-8-14 at my Ataxia Support Group.

Jason's Ataxia Speech

Success rate?

Here is a link to the audio version of this blog, in case you would prefer to listen to it: https://www.youtube.com/watch?v=EvWQ9ELwKks

     As every homeowner knows, ownership comes with repairs, (if you are a new owner and don't know this yet, I would guess that it will dawn on you the first time you smash your finger with a hammer, stab yourself with a screwdriver, and/or fall off a ladder). Yes, home repairs are a fact of life and can be quite frustrating for someone less, uh, inclined. Stir in a whole lot of Ataxia, and it can be, and usually is, more than just frustrating, it can cause a person (me) to question their sanity and think that, besides not having immediate access to a bathroom, living in a car might be easier. I have often found myself in a tight spot and been very thankful that no one has chosen that exact moment to film me and post it on the web as a how-to video on home repair. Yes, in the past I have demonstrated that I am one who enjoys a good laugh at his own expense, I would, however, fail to see the humor of it being put on the web. If anything is going to be posted for public consumption, it will be done on purpose and not while I am struggling with a Fisher Price Tool Set.

     Sometimes, however, I do have success. Of course, I may have to hold the nail in place with a needle nose pliers so as to avoid giving myself a deftly-applied manicure with a hammer, (actually my hammering is best described as gentle tapping, like if I was using a jeweler's tool and trying to remove a minute imperfection from a brittle piece of glass). And if I get an early start,  (seven am.), I can usually have one nail, ( two if it's a good day ), in by suppertime. I know this is very impressive but before you send me a correspondence suggesting that I should write a Do-It-Yourself Home Repair Guide you should know where my success rate or skill level lies. It is somewhere between, "Oh heck that's good enough," and, "I think I better call a contractor, and then probably a doctor."

     Over the years I have gained some experience, the kind of inner knowledge or intuition that makes it possible for me to assess a potential problem or area of repair instantly. To just know in a split second that either I should be reaching for my tool box or the phone so I can call in back-up. At this point, I also need to mention that, if I do decide to tackle a project myself, then the identification and administration of the right tool is useful for any kind of success. I am very proud of the fact that it only took two separate occasions to figure out that a sledgehammer is not the proper tool for driving finish nails and the pointy end of a shovel does not make a suitable screwdriver.

     Lest you think I'm utterly hopeless, though,  I have managed to stop a few water leaks by tightening joints that have come loose and reattached loose hinges on cabinet doors.  I even built a house once, (but that was in a dream and involved Legos, so that won't be going into the How-To Book).

     And then there's always Duct Tape, which has rescued me several times and that I have gotten to know quite well. You can't spend the kind of time I have with something without getting to know it in depth. But even though I have this close relationship, I wouldn't say that Duct Tape is a good friend. Oh sure, it's gotten me out of a few tight places. An excellent friend, however, is someone who not only encourages or inspires you to be the best you can be but also lets you know when you are acting like a knucklehead and that what your thinking is flawed, that it will not work, or is straight up...without question...simply a bad idea.You will never receive this kind of useful feedback with Duct Tape. It never speaks up, but instead goes along happily with whatever hair-brained scheme, repair, or use you can come up with. It doesn't warn you that it isn't going to stick to that gaping hole in the garden hose for more than two to three minutes because once it gets wet, it's really just done for the day. It doesn't speak up and tell you that you should probably just break down and buy a new vacuum instead of applying yet another layer of tape to the hose, which used to be black but now is gray from all the previous professional patch jobs. However, it now comes in different colors and patterns, so you should feel free to go right ahead and personalize that waffle iron, toilet seat, broken front window, or weather strip around your front door.

     Something will always break or be in need of repair, and home repairs will never cease. The only variable that will continue to change is my creativity to how I approach the problem. To be completely serious, I become the most frustrated with myself when my head tells me it should be no problem, but all the other players involved just chuckle. You know, like when you ask a thirteen-year-old if they would please like to clean their room and they just give you that look, the one that says, "Uh, yeah, get real."  That's how my body responds when the head says things like, " Oh no, it won't be a problem to nail that back together," or, " Just let me grab my toolbox, and I'll have that Furniture/desk/lawn chair put together, no problem."

But, like everything else in my life that changed when I was first diagnosed with an SCA, home repair is an area where I continue to do what I can and am learning to let go of what I can't. I just continue to laugh, keep an ample supply of band-aids on hand, and make sure I have the phone number of a good repairman on speed dial.