I'm Thinking Of You

In just a few short days I will be seeing some people I have not seen in, well, 40 years.  Some I don't expect to see again.  You see it is our 40th year class reunion coming up.  When we were in High School and Seniors to boot, we could not have imagined being out of school for 10 years much less 40.

But that is how it goes.  We blink an eye and life is mostly gone.  For some of that class, life is totally gone.  As in any group of people we have lost some of ours to death already.  I think of them.

I don't get to see my family as often as I would like, my brother's having their lives and me mine.  My cousins are busy with their lives and managing retirement plans and businesses.  We are not as close as we once were but I think of them.

I see familiar faces in town at the store or at Little League Baseball.  People that I know I should know and whose names were once as familiar to me as my own.  Mostly I wonder if they remember who I am.  Some I am glad don't recognize me.  Admit it, you have people in your life like that as well.  I think of them.

I have a friend that will be doing my memorial service that I communicate with almost on a daily basis.  He is more than a friend, and I have trust in him to keep me laughing about something.  Mostly it is some out of left field that gets us all going and the giggles started.  I think of you.

All of these people I think of nearly on a daily basis.  Some on an hourly basis.  I don't tell them a lot that I think of them and that is a failing on my part.  So today, I want you to know that I am thinking of you.  Not for what you have done and will do for me.

If I have not told you lately, I just want you to know....... I'm thinking of you.



Until next time.................

Dying Laughing

It seems in life I have responded to serious illnesses by saying things that get everyone around me laughing.  Don't get me wrong I would never be a stand-up comedian or anything.  On an open mic night at a comedy club, and me being the only contestant, I would still loose.  That's how bad the jokes are.

At the VA ALS Clinic today, was one of those times.  It wasn't so bad with the doc and intern, but right after them came the psychologist.

Yeah.

Uh hu.  Hummmm I went there.

It was insane every cliche and bad psycho joke started running through my head.  But this time I didn't start it.  No really.  My oldest daughter that I love dearly, and whom will be brought up on justifiable homicide charges after she reads this, started it.  My first reaction was that they had finally caught up with me and I would be seeing the nice young men in those little white coats in a few seconds.  HER first response was to laugh and say, "With our family, doctor you can finally retire!"

This in the first few seconds she was in the room.  That was the high water mark.  Believe me it went down hill fast from there.

I won't, for legal purposes and for protection of the guilty, repeat any more of the conversation.

She, the psychologist, has a hard enough job as it is I suppose.  Talking to the living dead about how they are dealing with the fact that all too soon they will cease being the living dead and just be dead.  Now how bad a job is that?  I doubt that any amount of training would ever get me to where I could do that.  At least with a straight face.

All I can say is, Doc thanks for laughing a while with us for a while and letting us forget in our laughter that pain of knowing, and being so damn scared for just a little bit.  I hope it was good for you as well.

For the curious, I guess I passed, cause I got to go home.



Until next time.................

Knight In Not So Shiny Armour

It was in 1980 or so that I first heard the phrase, "You're my knight in shining armour."

I never felt that I was worthy of that.  "That" being put on a pedestal and adored so much.

During our life together I have managed to tarnish, dent, and now crack that armour in so many places.  I am amazed at how much we have gone through together, and how much we have grown, and grown closer, despite those dents, dings, and cracks.

Now, when I am battling this insidious thing called ALS, not only the armour is being breached in places, but the pedestal that she put me on so many years ago is also cracking.  Some day soon that pedestal while come tumbling down and bring me to a sudden and final halt.

For all the years that we have been together and all the bad times that we have made it through, this will be the only time that I will not be around to help her.  To let her lean on me.  To hold her tight and tell her all will be okay.  To wipe her tears away in the middle of the night.  To just hold her.

And that will be the final, fatal crack in my armour.  That tarnished, rusty shell that has been with me all these years, will have been broken beyond repair.  For I will, for the most important time in her life, fail her.  There will be no second chances on this one.

If you ask me if I am afraid of dying, I will tell you no.  That is the truth.  The truth that we all must face eventually.  Some sooner than others.  Some knowing it is coming and some never ever conceiving it might be them.  What I fear most about dying, is how those I leave behind will fare, knowing that I will not be there to help them through their grief.  I can only hope that memories of us in happy times will help.

Once again my armour will be free of the dents, dings, cracks and rust in my Angel's memories, and I will be her hero once again.



Until next time...................

Without Glasses, In The Dark

I woke up last night to go to the bathroom.  I was rubbing my belly when I found something hard on it.  Without thinking I tried to look at it.  I put it on the end of my finger and looked at it.  That's when it hit me.  One, I didn't have my glasses on and without them I can't see a billboard at twenty paces.  Two, I was in the dark.

Uh, duhhhh!

I felt like the blonde that looked over the chain link fence to see what was on the other side.

Unfortunately, that is how many of us go through life.  Without glasses and in the dark.  We find things and can't see how wonderful they are because we don't have our glasses on, or we are in the dark.  It is sad to think of what we might miss simply because we don't take the time to view what is right in front of us.

I was that way for a long time.  In high school I didn't see the girls right in front of me who wanted to be more than just a friend.  I missed out on a lot of good times because I was so shy and unobservant.  One lady, years later confessed to me she was so in love with me that she cried all day the day that she found out I had gotten married.  Fortunately we were able to reconnect years latter and became close again along with our spouses.

Or the times that opportunity came knocking in the form of a job.  You know the kind of job that only comes along once in a long while and never to be repeated again.  For what ever reason we don't recognize what a jewel the opportunity really is.  My high school English teacher comes to mind when he told us that he could have bought in to a company for a hundred dollars.  he just couldn't see how a guy could succeed in converting vans in his garage to campers.  And that name, Winnebago, what's up with that?

Now that I have ALS I can no longer sit back and ignore chances when they come by.  Recognizing them might be like looking at that hard thing I found on my belly. Without my glasses.  In the dark. So I guess I will just have to take more chances and hope for the best.

Oh and no I never figured out what it was.  Not for sure I want to either.



Until next time.................

Cross Check

It's 1983 somewhere over Southern Alabama, in the cockpit of a UH1H Iroquois, better known as a Huey, and a cocksure young man wearing the the bars of a 1st Lieutenant is trying to master the art of flying using only the instruments on the panel in front of him.  And getting his butt kicked.  In his head and over the intercom, he is hearing the words, "Cross check, CROSS CHECK, CROSS CHECK!" 

Those two little words mean to look at each instrument in turn to make sure you are in trim, you are holding altitude, maintaining airspeed, and there are no malfunctions on the only thing keeping you in the air which is the engine.  The wannabe aviator had to look at each in turn and not get mesmerized by any one of the gauges and instruments that kept him going in the right direction to arrive at the right place, at the right time, and in one piece.

You must scan across each one taking in the details in less than a second and move on to the next one while making any corrections that might need to be made.  Eventually you become quite good at it. Some can do it a lot quicker than others so that it seems they are natural and adept flyers.  As any flight instructor will tell you there is no such thing as a "natural" pilot, so most of us have to practice, practice, and practice some more to meet the standards.

I suppose life is much the same way.  None of us have the advantage of being "natural" at living.  We are taught by, if we are really lucky, loving and patient people around us who have gone through what we are going through at the time, years before.  Specifics may have changed over time but the goals of growing and living and loving never change.

I find myself cross checking everything in my daily life now. Almost frantically looking at everything, and trying to take it all in.  Picking out details and minutia that others might miss.  This time of year is especially important to me because so much changes on a daily, if not hourly basis.  Spring bringing new growth and renewed life to the earth.  Children growing and stretching their boundaries.  Old folks growing older and, hopefully, wiser.

Yet, if I do not look, if I do not see, if I do not take it all in, I miss it.  I miss the first buds on the trees,  The opening of a flower blossom, going from a promise to perfection.  The start of new life as shoots of bulbs push through the earth to get to the sunlight.  Birds, and reptiles pushing through egg shells that they have been in, seeking their own freedom and existence.

I used to take all of this for granted, but not any more.  This year there is an urgency to take it all in because I do not know how many more such moments like these I have left.

So I urge you on this fine Easter Sunday, to cross check your life in each and every moment.  Look for the things that are important.  Look for the beauty.  See the things that need to be corrected and correct them and move on to the next.  Feel the energy of being alive.  Give love where needed and not just where expected.

Most importantly live!  Not just breath.  Live!  Grab life by the nape of the neck and scream, "I am alive!  I will wring out every last drop of living out of life that I can!  I will LIVE!"

Oh that young officer?  He did make it through and went on to fly air ambulances and in doing so saved a few lives along the way.



Until next time..........................

Unleash Your Inner Elvis!

One of the manifestations of ALS is muscle twitching.  You know that little nervous tic you get at the corner of your eye some times?  It is the same thing only in larger muscles of the face, arms, and legs.

It really is strange to watch these tics.  When they first began it was like something just below the skin trying to get out.  Sorta like in Alien when, at the end, Sigourney Weaver gives birth to the Alien baby.  It was cool.  They didn't hurt and were entertaining, at least to me.  Okay, I'll admit it, I'm weird.

What started out in the inside of my elbow of my right arm, has now spread to more, and larger muscles, in my arms and shoulders.  Now to my face as well.  No I am not always making faces at you on purpose, but it is sometimes.  I can make faces and have a ready excuse if some one should take offence.  I can have so much fun and get away with it all at the same time.

But I digress.

A new tic has showed up in the past week or two.  It is on the right side of my nose and upper lip.  The best way to describe this one is, it is like a string connected to my upper lip and it is being pulled straight up.

Yeah, you know where this is going.

Elvis made that expression famous when he was at the top of his popularity.  A half grin, half sneer, all attitude.  Made in the direction of young attractive girls and there might have been a swooning in the making.

Whenever this happens to me now I have to giggle a little to myself.  It is funny to me because I have the thought that I am channeling my inner Elvis.  And it is all involuntary on my part.  I'm not even sure that I could make that face voluntarily now or not.  Tell the truth, I was never very good at making it when I could control it.  I'm better at it now than then.

I guess what I am trying to say, is that I am still having fun even with the curve ball that life has thrown my way.  If I would let it, all of this could wear me down and drive me into seclusion and depression, more dependent on a pill to put me to sleep at night, another to wake me up in the morning, and a third to keep me from shooting jerks that I would come across all day long.

As it is I can make faces at you and you will never know if it is me doing it on purpose or the ALS doing it for me.

And I will never tell.


Until next time...................

A Challenge

There is one thing that I wish you, the reader would do.  Take a day and go out in public and try to make it through the day without speaking.  Use any other means to communicate that you have, gestures, sign language, Arkansas Hillbilly iPads (if you don't know what that is let me know and I will tell you where to get one), write notes.  Go where people don't necessarily know who you are and try and strike up a conversation.  The only caveat is that you cannot tell any one that this is an experiment.  And you can't "cheat" by talking when no one else is around.

If you do this, let me know what your experience is/was like for the day.  Tell me of any insights you get from doing this as well.

Should be interesting.



Until next time..........

Imagine.........

Imagine that you are dreaming and.....

No matter how tightly you grip something it still slips out of your hand.

When you try and talk nothing but a grunt comes out.

You smell food and want beyond want to taste it but know that you cannot because your tongue does not function and you wind up choking on your food.

You want to stand but your legs try to give out on you.

You hit a nerve in your finger and it sends shooting pain through your hand.

You want to lift something but you don't have the strength to do it.

You want to go on a day trip or other special occasion and an hour into it you are exhausted.

Want to hold your loved one close, but your arms don't work right.
You try to use a spray can and you can't get the button pushed.

You have a cramp in your toes that will not release and you cannot reach them to get them to release.

Your toes for no reason feel like a dull ax blade is being pushed down on them and there is no relief.

You are in pain and try to take a pain pill but you can't get it swallowed because your throat doesn't function like it should.

Your arms and legs constantly feel like they are asleep with no reason for them to be so.

Because you cannot talk, people think you are mentally deficient.  Lay people as well as professionals.

Now imagine waking up and realizing that it is not a dream but reality.  That is what I, and thousands of others with ALS, wake up to every day.  Our bodies slowly betraying us.  Our minds telling us that we can still do things that a year ago, a month ago, a week ago we could do with no problems but this week, this day, this hour, we cannot.

It is frustrating, depressing, and demoralizing to face these new facts of life and living each and every day, but we do it each and every day that we have.  For each of those days are more precious than anything you can name, and they become more valuable for each one that passes.  For we, the ones with ALS, know how close we are to dying.

And we have gotten good at hiding that from loved ones.



Until next time........................

An Answer........ Sort Of

I had the great privilege to have supper with a good and dear friends of ours the other night.  In sitting and talking we covered many topics and never stayed on one for very long at a time.  Just a normal evening with friends.  Well as "normal" as it gets with he and I in the same room that is.

Before he left I asked him about my last posting here.  I caught him by surprise as I think as he had not had the opportunity to read it yet.  I gave him a short summery of what I said and what I was asking for.  He thought for a few minutes and we moved on to other topics.  As we started to say our goodbyes he looked at me and, quite emotionally, asked me how he was going to "get over this thing" of me dying.

Here, my friend, is my answer.  I don't know.

I do know that the Human Spirit, both collectively and individually, is very resilient.  It can be beaten, scared, scarred, driven to insanity, made to do the unspeakable, endure the impossible, soar to the highest peak, invent the most remarkable things, love the unlovable, do the impossible, and, given the chance, it will always survive.

That is not to say it will be easy.  For loosing a loved one, or a brother from a different mother, is never easy.  It leaves holes that can never be filled.  We can try and fill them with something else, whether it be material things or something of a more ethereal nature.  I am not for sure that they ever can or will be filled.  Not even for sure that they should be.

The fact of the matter is that you will survive.  In surviving you will be stronger.  In being stronger you will able to help those who need your strength.  In turn they will be stronger.

I truly don't know the answer to your question.  I can only hope that this has helped.

One other thought.  A wise man once said that as long as one person remembers you, you are never truly dead.  I could never ask for more than that.


Until next time..................

What Would You Like To Know?

It has been a year for this blog.  I have been talking about a variety of things that go on in my life.  In this time I have tried to be positive and avoid the inane and mundane of life.  The inane and mundane is what Facebook is for.

For the future postings I thought I would ask you, the reader, to suggest topics about what you would like to hear me discuss.  Ask anything.  I will consider all requests.  Just don't expect me to discuss any intimate details of a personal nature.

Now it is up to you to determine what I will write for the next few times.  I look forward to hearing from you all and what you may suggest.


Until next time...............

Those Sudden Stops

I have been cleaning up from the move recently and came across a helmet sticker* that says, "It's not the speed, it's the sudden stop."

Pretty straight forward if you ask me.

Then again, I got to thinking about it and realized that it is rather deep too. You see in life I have found that no matter how fast you go and how hard you live, it is the sudden stops you have to look out for.  For instance..............

The time you see your true love and realize that they are the one.  I knew it before she did.

The first time you see that the new life that changes the whole world.  I was lucky, that happened three times for me.

The times that absolutely take your breath away.  Like the view from the cockpit of a helicopter of an impossibly black night lit only by a billion billion stars that seem to smile at your awe.

The time that your grandchild comes to you unbidden and gives you a hug and kiss and tells you that you are the best granddad ever.

Doing something unexpected for your mate and seeing her eyes light up and tears begin, all along knowing that they are tears of unbridled joy and happiness.

Then there are others that bring you to your knees.  I prefer not to dwell on those because, even though they shape us for what we are now, they are still too painful to think about.

Although my throttle doesn't allow me to go as hard as I can and as fast as I can any more, I still try to keep my speed up and the wind in my hair.  For in doing so I create memories and moments that are gold.

Recently my throttle has been stuck in idle, and it is driving me crazy!  I need to work on correcting that, but I can't seem to find that cosmic can of WD-40.  If anyone knows where it is please let me know.  I sure can use it soon.

In any case keep your throttle open, the pedal to the metal, and enjoy life!  Don't worry about that sudden stop.  It will come when it comes.  Worrying about it won't change that and robs you of joy and happiness in the here and now.



Until next time...........................

*Helmet stickers are like bumper stickers for motorcycle helmets.

Talk to Me

I have, since starting this blog, tried to stay positive in it's content and approach, but there is something that keeps bugging me that I want to address.  I have thought about this for several weeks and with several appointments with new doctors and clinics looming on the horizon, I think it time to say something.

There is a great pool of knowledge out there among health care providers, from LPN's through the most knowledgeable doctors.  They know of what they speak for the most part and only a few forget from time to time that we patients may not know how to understand what they are saying.  At that point it is up to us to tell them to slow down, take a breath, and translate what they are saying into something that we can understand.  But this is not what I am concerned about.

There are those that want to tell us what we are feeling or going through, even though that might not be happening with us at all or we have skipped over certain things in the "normal" coarse of a disease.  For example, I did not go through the five stages of grief associated with learning that I have an incurable disease in ALS and will certainly die of it in the oh so near future (relatively speaking when the the average life expectancy is 78.84 years according to some studies and I am now only just shy of 58).  I am not talking about that either.

There are those professionals who, learning that I can no longer speak, want to do as many "civilians" do and slow down their speech and treat me as a grade schooler in dumbing down what they say, or as I had one nurse practitioner do to me recently, lean in and make sure she had eye contact with me every time she said anything as if I was relying on lip reading to understand what she said.  Needless to say I was not impressed.  However, I am not even talking about that.

What I have a great deal of trouble with are professionals not talking to me.

I am a fairly intelligent individual, having graduated college in a total of eight semesters with a dual major many years ago when a college degree still meant something beyond a stepping stone to a higher, post-graduate, degree.  I was even able to learn how to fly a helicopter in the Army.  But for some reason doctors, nurses and others all want to address whom ever I am with instead of talking to me.  They ask me how I am feeling and then take the answer from my wife or daughters instead of having patience enough to let me answer for myself.  If that is not enough they then tell my escorts what is going to happen with my treatment instead of talking to me.

Yes, they can and should know what is going on with me and what my treatment is going to entail from that visit to the next, but I am the patient.  Only I know for sure what is going on with my body and how I actually feel.  Only I can tell you if a course of treatment is going to mesh with what I can do and want to continue doing or not.  Relatives want only to protect us as much as they can and have our best interests at heart. I realize this. But even they do not know what the patient really is thinking or can really do on a daily basis.

There I've said it!  I have ranted and raved all that I need to.  I am sorry that you, the reader, have to see this side but I needed to say it.


Until next time.............................

I Have Become Like My Dad

I thought of my Dad this morning.

That, in and of itself, is not unusual for I think of both of my parents every day and often every day.  What got me this morning is that while dressing to go to Wal Mart to pick yet more drugs, I was dressing in layers for a fairly mild winter's day.  By mild I mean temps in the mid-30's, not like on Monday with the bitter cold of lower 20's.

I have always been cold natured, preferring hot weather to winter's cold.  My philosophy has always been that in hot weather you can take off clothes and find a nice cool creek to cool off in, but in winter there are only so many clothes you can put on before you become a hazard to yourself.  For example, when you were a kid, and it snowed, and your mother put so many layers of clothes on you that if you fell, it was impossible to get up again without help.  See what I mean?

Dad towards the end of his life would bundle up with layers of clothes in his room at the nursing home.  Long johns, tops and bottoms, outer clothes and then maybe an insulated shirt over that.  I never could understand why he would do that.  Even on that last Father's Day picnic in 2006 he was dressed similar to that.  As I remember it was a gloriously bright and warm day, and yet he was bundled up and stayed in the sunshine as much as possible, while the rest of us were comfortable in shirt sleeves.

Despite being chilled, and staying in the sunshine as much as he could, he still seemed cold.  He did enjoy being there I think.  Surrounded by children, grand-children, and great-grand-children, all gathered to enjoy a picnic and honor the man who had started it all, as they say.  He grinned and laughed and played with the kids, teasing them to get a reaction from them.  Usually it was a smile.

Today though, I found myself bundling up much as he did on that last Father's Day.  Thermal knit top, shirt over that, and a coat over all.  With all of that I was still chilled and my hands stayed cold, much as they do now a days.  I did enjoy getting out, even if it was for more meds.

It did occur to me as I dressed that I had become like my Dad.  Considering the kind of man he was, I could do worse, much worse, than that.

Thanks Dad.



Until next time..................................

One Year and Counting

One year ago we were in a state of anxiety, waiting for all my tests to be done and for the results to come back.  I knew already that the results would not be good.  We just had to go to one more appointment which would come on the 26th.  On the 27th my neurologist gave me the long face.  In that year I have gone from being able to speak and be understood, to not being able to speak at all.  I have lost a whole person in weight, from 215 lbs to about 140.  But...........

Since then it has been an amazing year!  Wait!  What?!  Nope not a typo.  It has been an amazing year for me.  I have learned so much about myself and others over the last 360 some days, and I have met some really beautiful people.

For instance, Laura Blume from ALS in Wonderland, who from a great personal tragedy has made something totally amazing.  She has taken her time to actually come and visit with us and to encourage us.  She and her mother are truly Angels among us.

Clyde Reed of Paralyzed Veterans of America.  He cut through so much red tape that surely his light saber came close to over heating.  In less than a month he had my VA disability and worked very closely with us on any number of problems and blips along the way.

The great folks at UAMS ALS/MDA clinic.  Those ladies all rock and the staff so caring and gentle it is unbelievable!

During this year I have learned that the depth of feeling for loved ones is bottomless.

Friends are as precious as any gold, silver, or any valuable gem that has ever been.

I have gone places and reconnected/connected with relatives and unrelated family that I never knew I had.  You know the people who some how find their way into your heart and if they ever leave, a hole will open up that never actually heals.  Thank you Matt, Meghan, and Beau Briggs, our lives are unmeasurably richer because we found you guys!

Yes, it has been a hell of a year in many many ways.  Despite it all, I am richer today than I was a year ago and have so much more to be grateful for.


Until next time................

The Moving Saga

Back online!  Finally!

The moving saga is just about done and thank goodness for that.

The first few days it was like a box blizzard had hit the house and had not let up for a few days.  We had paths running through each room and not much more to walk around the house.  We had no stove, no refrigerator, and some other electrical and pluming problems, but things have been worked on purchased and rectified.

As far as the stove and refrigerator they are new.  It is a challenge to keep the flat top stove clean and to get used to cooking on something that does not have traditional burners.  It is very nice to have something that I know was not used and abused before we had a chance to use it.  Thanks to our landlord we have that chance.

We didn't have a dryer to work because the circuit breaker was fried and then when replaced the dryer outlet blew up.  Both were replaced and now it functions well. Friday night after doing the dishes, the sink refused to drain.  Drano did not help and it was Monday before some one could come out and rotor rooter the drains.  Now the drains run free and clear!  Yea us!

In the meantime, the dryer did not survive unscathed though. The timer setting knob doesn't function anymore.  We got to figuring up on the age of the dryer and decided it might be time for a new one after 17 years of service.  If we replaced the dryer we might as well replace the washer as well.  There goes eating for the rest of the month!  Found a pretty good deal at Sears and we will have one of each coming on Monday.  Joy to us and new appliances.  And yes we are on the appliance salesman's Christmas card list for next Christmas.  Should be well invested in appliance company stocks as well.

Now many of you know my sense of humor, but I assure you, all of the above is true.  If you would like to stop by and see us to verify the story feel free.  We would love the company and G will be able to show off her new stuff, some of which we will actually get to keep.

The porch light is on and the door latch string is out so feel free to stop by.


Until next time.............................