Head Above Water

A lot of things have changed in my life since May 25th 2010, as many of you are aware. I won't go into specifics (read below for details et al) but I try to hang onto as much of past and who I was, as is feasible. Time was I was a halfway decent swimmer (although for some reason I could never float on my back) but these days I fight to keep my head above water

Two things inspired this quick little comment (which will probably turn into a blog entry) There are pieces of my life that have slipped away, well maybe not away but down on my priority list. 10-15 years ago, this would've been one of the biggest days in my life; the announcement of the Oscar nominees. I used to see over 100 (one year over 200) movies in a year. I was a resident expert on a lot of things cinematic as evidenced by my own website full of reviews and articles about such. Nowadays, I am so far out of the movie loop that I can't even see said loop anymore. I'm lucky if I see a movie every 2 months. The only contenders I've seen are Lincoln and Les Mis (neither of which I was a huge fan of) and Moonrise Kingdom which was award-worthy. I'd love to say that I could slip back into that lifestyle now that I can no longer work but circumstances make that markedly difficult (access to movies being in a smaller market than KC, time, energy, health etc). 

Another reminder was watching a movie that I love and somehow forget the greatness of, Crimson Tide. I will watch it anytime, regardless of where I come in on it at. If my disability gets approved, maybe I'll try to regain some semblance of this. In the meantime, I watch another aspect of my past fade away as others become more prevalent. But, do not read this as a disappointment or lamentation, simply an observation on an overcast rainy day watching a great submarine movie. 

We mature, we grow up both physically and mentally and we to bring as much of who we were into who we are. Some things are easier than others. We can't drink like we used to, we can't move like we used to and memories begin slipping (although I still have trouble saying the word cinnamon) But there are things and people that we have control over to some extent. For me, I grasp on to what I can, hang on to the inner tube and stay above the surface. Once again I've rambled on but those who are familiar with me know that this is how I would talk were we face-to-face. Take care all..

8.5.7

If I Only Had A Brain

It has been said and noted by myself and others that my brain can be a dark and scary place. The amount and types of things that I remember can sometimes pale in comparison to why I remember them and what brings them back out of the massive file cabinet in my head. 

For example, that last file cabinet statement is actually a reference to an early-90s  Fox television series that a lot of people have forgotten about; Herman’s Head. In the show, Herman (William Ragsdale) was an office worker whose brain was filled with 4 people representing his emotions and intellect. Hilarity ensued. Whenever he tried to remember something you would see them sifting through filing cabinets.  On one of what will probably be a daily occurrence of tangents (don’t worry, unlike real life, I should be able to make it back since it’s written down) there were two memorable stars on that show. The receptionist was played by Yeardley Smith. Who you say? Well on one episode she answers the phone and says “No I am not Lisa Simpson”. Yep, she does the voice. Second and more prominently, if featured the debut to the masses of one Hank Azaria.  America is thankful. But now do you see how my mind works? One little statement or occurrence can set me off into a story or memory which may or may not be related to where my thought process began. I set out to do an intro to my new style of blog entry and instead I end up coming up enough for my initial one. 

And as a final note, there really is no rhyme or reason to said filing system. It fascinates even me as to what vision, thought, emotion or song will bring one of said memories to light. But now, you have a better understanding.

8.5.7

Let It Be

(originally written July 25th, 2008)

And all the roads we have to walk are winding. And all the lights that lead us there are blinding. There are many things that I would like to say to you but I don't know how.

There are those monumental moments in life where you remember exactly where you were when they occurred. For some, it's the Kennedy assassination or the Challenger explosion. For most of us it is the horrific morning of 9/11 and the subsequent aftershocks. Then there are those personal moments which burn themselves into your soul and leave that permanent scar as a reminder.
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I remember when I first found out the news. I froze and was flooded immediately with 15 years of repressed memories and emotions. Do I stand fast and let things just pass or do I let the bygones pass and face it. Would I be doing because of forgiveness or because of the situation?

I remember sitting as motionless as the time that passed without notice. The time that had passed so fast over those years was now crawling towards me.

I remember the internal conflict once the realization set in. The resentment of the last 15 versus the happiness of the first 12.

I remember replaying each in my head, an emotional highlight reel, hoping that the memories would decide the right thing for me to do. I was too scared, confused and hurt to do it myself so I turned the reins over to the past.

I recalled my first clear memory. My tiny knees pressed against the wooden walkway as curious hands reached for the bubbles. Strong hands grasping and saving me.

I remember thinking that the coolest thing in the world was a truck with a bed in the back where I could lay down and still watch the road get swallowed up in front of me. I remember falling asleep in that bed and waking up in what seemed like another part of the world.

I remember Memphis and the first taste of barbecue. I remember Dallas and the chill of a meat locker. I remember Houston and having to duck to get inside of an old submarine.

I remember the special trip, 3 hours out of the way, to go to a high school championship game.

I remember my first taste of truck stop food which fostered the appreciation for small roadside diners that exists to this day.

I remember the sound. The sadness of it fading away and the excitement of its crescendo.

I remember killing the spiders and you killing the snakes so we could work together under the house.

I remember speechless hours in front of the television watching grown men in tights roll around with each other, along with the smile and bellowing laugh that it brought out.

I remember the subsequent discussion regarding its legitimacy and your emphatic defense of its realism. I remember this was the point that we both realized that I was smarter than you. You were more proud than resentful.

I remember Robert the Rose Horse and the emphatic sneezes to bring him to life.

I remember your proud claims of introducing me as "the genius"

I remember the colors. The yellow shed. The coolest red pickup. The big blue semi. The faded brown box full of my puberty inspired fantasies.

I remember the sounds. Conway Twitty, Hank Williams (Jr and Sr), Don Williams, Freddy Fender, Kenny Rogers. And your theme song: Convoy.

I remember the endless smile. Seeing Jerry Reed plow over the motorcycles and wanting to be the Bandit to your Snowman.

I remember the smell. Exhaust, grease and oil, country fried steak.

Sensory overload fades into darkness and the other side peers out.

I remember the beating, never being able to play with Hot Wheels tracks again.

I remember the yelling. Not enough pillows to muffle your voice and her tears.

I remember the crying. I pretended not to and she pretended that we didn't hear or know.

I remember the absence. Days became weeks and months. Until the day when I learned you weren't coming back. Why?? My 12-year old "genius" brain couldn't wrap around it.

I remember the exhaustion and sadness. It showed in her eyes every day and I heard it every night. It grew deeper and darker as she tried to hide it while using her last ounces of energy to make sure we were taken care of.

I remember the emptiness. Growing up with that one piece always missing. Like the chair missing a leg. It would stand but never completely and never the same.

But then the light peeks through

I remember the strength and independence fostered by self-reliance.

I remember that appreciation of working for something and savoring the fruits of labor.

I remember feeling my backbone grow stronger with each day you were gone.

I remember recasting your role and moving forward. Stronger and better but not forgetful.

I remember you rising again, the unexpected phone call.

I remember the reconciliation, the offers of repentance for the abandonment.

I remember the visits to California, the cows, the handy dishwashing tool that you showed me.

I remember Dodger baseball games replacing wrestling as the quiet bonding ceremony.

I remember introducing you to the love of my life and your smiling, welcoming hospitality.

I remember the constructive criticism of my lane changing driving habits.

I remember the parental reconciliation at the "happiest place on earth"

Then I remember the dusk returning...

I remember the softly pleading words "I wonder who will take care of me when I cannot anymore". I realized these were not words of self-concern but attempts to elicit guilt using blood relation as bargaining chip.

Then I remember the nail that drove the permanent wedge. A car. The sale of a car, changing jobs and locations as I had rearranged plans and finally the attempted justification and my last words to you.

'Forget it Dad, I'll do it myself"

Those words echoed in my head as I used them and believed them.

Since then there are things I have learned or did not notice and things that I remembered.

I remember them all, the good and the bad. I always loved you but didn't always like you and will never forget you.

Sorry that I never got the chance to say any words or close things up between us. I don't know if the words would have been good or bad. I wrestled with what to say, what I felt and how to express it correctly. I wrestled with it so long that time ran out. I realized that it wouldn't have mattered what I said to you, just that I said something, anything before I never got the chance to again. As it stands now, my last words to you and my last feelings of you while you were still here were those of anger and resentment. Right or wrong, justified or not doesn't really seem to matter now. My silence and lost opportunity is a weight of regret that I carry for the rest of my life. I'm sorry dad. Not necessarily for the way I felt or the actions I took but more for the fact that I closed the door permanently and by the time I felt I was ready to open it again, the door was gone.

Dad, I am sorry that I hesitated and was too scared and indecisive to face you for the final time. I cannot say that I am sorry for the distance I created because I lost you before I could decide the words I wanted to say. I should have been stronger. I now realize that the words I would've said were not as important as the one word I didn't say and that you deserved. Goodbye.

And so it goes, and so it goes. And the book says, 'We may be through with the past, but it ain't through with us

Nirom Jerauld "Bill" Salisbury - (September 21, 1933 - July 25, 2007)

The Chronicles of Biff - Chapter 7 - 01/01/2013

There are some in-depth philosophical observations in the most unexpected places. In this instance, it is from the 80s classic movie “Ferris Bueller’s Day Off”.

Life moves pretty fast. If you don’t stop and look around once in a while you could miss it.

People see the new year as a time to take stock of the past, revel in its successes and think of ways to rectify or at least modify or alter those things which were not as content with as we’d like to be.  Some of us even have the same resolutions from year-to-year which are subsequently “blown” so to speak not too far in.  I don’t make resolutions though. I look back and notice the good and the bad equally and learn from both. I have always cherished the value and beauty of life; hell the world can be a fun place if you just pay attention to it, as Bueller infers. In the 2 ½ years since my diagnosis, I have paid even more attention to large and small aspects of my life and given them their equally due attention. I plan to continue this in the new year. That’s one resolution I can make for sure

Sometimes it is indeed the conglomeration of these little things that make life magnificent and make the world go round. I spent my 3^rd alcohol free New Years with as good a group of friends as one could ask for.  There were no crowds, no loud obnoxious people, no lines to get drinks, just Trivial Pursuit (80s edition that I finally got someone to play with me), Apples to Apples, wine (sparkling grape juice for me) and lots of laughs and good conversation. Good companions are priceless in value, at least to me and tonight was further proof of that. I think that in this fast paced, hustling, bustling, insert your cliché here, world we sometimes fail to cherish and fully and fairly appreciate what and who are around us. I take a lot of medications and such to make it through every day, yet the most therapeutic things in my life come from the people who are in it.  

I know I say this often in some form or another and am repetitive about it but I can’t help myself.  It is sincerely how I feel and I can’t stress the importance of it enough so bear with me as the days melt into weeks, months and years. I will continue to do my best, to fight onward and upward and to revel in and cherish the value and gifts that life has blessed me with. 

The Chronicles of Biff - Volume 2 - written 11/02/2010 – updated 12/31/2012

This is a modification and updating of a previous post..enjoy

On the eve of another rotation around the sun, I felt a bit reflective on friendship and my life these days in general. Bear with me because, as most know, I get a little rambly and wordy at times.

As some people may notice and/or may have commented to themselves or out about, I have a lot of Facebook friends. I have gone through and made sure that each and every one is someone who I truly consider a friend.  And physicality is not a determining factor on what friendship entails, as referenced by the fact that there are a good number of my friends who I know solely through online chatting either here, or Yahoo or even AOL back in the good old days. My definition of friendship lies in the words and actions reflected therein. Each and every one of you holds a special place in my heart and I wish I had the ability to personally address and thank every single person for being there for me. As I have beaten into the ground, I’m sure, I am going through the hardest thing I have ever dealt with in a life time that can be at least described as never dull. And through all of my venting, my whining, my complaining and my general descriptions of my physical and mental health, I have felt the power of friendship from all of you and it has helped me deal with and cope with this crap that I’m stuck with forever. And as I have said a million different times in a million different ways (forgive my repetition but I really am sincere), thank you one and all for everything

This is a basic breakdown of the genesis and steps through the initial process/diagnosis. It was originally written about 6 months into things and right around the time when the pain and symptoms began to reach the level that they are at now. I have updated, edited and modified certain aspects for current and correctness. Although some of the emotions etc and such may have changed, the facts have not and my feelings were current and correct as of the time I wrote it. Enjoy..

Apparently Biff likes ice cream. Who would have thunk it. He also likes Count Chocula, Double Stuf and White Fudge Oreos and lemon drops. This is a good thing because I do too.

I think one of the biggest casualties in this whole thing has been my appetite.  When I first when to the doctor about this around the end of March, I weighed a svelte 195 lbs., more than I had weighed in a long while. This was probably due to the new anti-depressants that I was taking. Once the cramps and pain started kicking into full gear, the weight started dropping. At my lowest point, right around diagnosis time at the end of May, I was 176 around May/June 2011 it was down to 154. It has since rebounded but still not near where I was when all of this started but thus I digress...

Try the new pancreatitis diet plan and watch the pounds just melt away.

The pounds were slowly dropping off with each doctor’s visit and new test. First came the sonogram checking my pancreas (just the surface) and found nothing. That was followed by an endoscopy looking for ulcers or infections, nothing, the a CAT scan looking at my pancreas again, 0 for 2 on that one and then a nuclear gall bladder scan (which was really cool because I got to see my gall bladder glow) which resulted in no answers either.  By this point it was going on two months and I had resorted to House (which my doctor said she liked to watch to find all the errors), WebMD, and Mystery Diagnosis for any inkling of an answer.

By this point I was seriously starting to wonder if this was all in my head. All of the tests were showing nothing and there were no physical symptoms to justify what I was feeling. I began to wonder if I was really stuck with this until it "passed” or just stopped as suddenly as it started. My doctor/savior was still curious and undaunted in her quest to get answers. I was and still am very thankful for her being as stubborn as I am. She really believed it was my pancreas despite all the other tests being negative but I began to see her frustration with it as well. She said that she wanted to try one more thing before referring me to a specialist. Let me back up a second, I talk in lots of medical terms lately and have become very familiar with my abdominal area and any and all tests involving it.  This time they wanted to put another tube into my throat, this time with an ultrasound monitor on it, to further look at my pancreatic area.

One more time...with feeling!

This one seemed a bit more serious and I actually was feeling a combination of hope and fear that this would find out a) what was wrong and b) that I wasn't crazy. Well, I am crazy but that's another rant for another time. Thus I digress.  Once again they wheeled me in, numbed my throat, put me to sleep and once again, I remember nothing but the nurse saying something followed immediately by waking up in the recovery room. It was really quite odd to just lose pieces of my life like that. After trying unsuccessfully to wake me up a few times, the doctor gave up and the nurse was there when I came to. She told me that they found out that it was chronic pancreatitis. Then my girlfriend  wife walked in and apparently, I say apparently because I don't completely recall bits and pieces when I come out from anesthesia, I raised both hands in the air and said

Me: "We have a winner!"

She: "What is it?"

Me: "Chronic Pancreatitis

Nurse: That means you can't drink anymore

Me: Does that mean I can't drink anymore?

Nurse: Yes

Me: Well, it was a good run

And I have not had a drink of alcohol since. 950 days as the New Year rings in.

One thing this has not taken and will not take from me is my sense of humor. When it does, it means I have given up. And anyone who knows me knows that I am nothing if not stubborn. And so the journey began from there. I don't think I truly and immediately grasped the meaning of my situation until I went back to the doctor (to whom I repeated the "we have a winner" speech) told me what this diagnosis meant going forward. Words like, no cure, rest of your life, take all these pills every day, rest of your life, don't drink anymore, rest of your life! Those words echo in my head, every day, they consume me at times. In those moments my sense of humor is gone. I want to give up. I want to give in. I want to just lie in bed and let it win. Take medicine, do nothing, be on disability and basically become little more than a shell of who I used to be.

But in those moments, I hear the echoes of my mother’s voice in my head when she told me "You control the disease, do not let the disease control you, this thing does not define who you are and you cannot let it, or it wins" Stubborn I am and I don't like to lose. Rest of my life?? Bring it on!

Epilogue: I am now entering into second full year and 3^rd year in general of this and I think that things have leveled off to some extent. After my diagnosis my gastroenterologist said that this disease is a long, lifetime journey and that I hadn’t even began to crawl yet (this was 6 months in when the pain had started to ramp up to the levels that its at now). And in the beginning, it actually was tolerable. From May to say Sept/October my life wasn’t near as disrupted as it has become. I was eating fairly regularly, barely having any flares or adverse effects. Then somewhere the switch flipped. It didn’t feel like it was built up to, it just seemed to hit me one day. That’s when I ended up on the Oxycontin (which is now Morphine..most know my thoughts on this) and the Vicodin became more prevalent. I think that throughout 2012 I have mastered the art of crawling and even pulling myself up onto the furniture. I have come to acceptance phase of things I believe. My life is a routine, mostly out of necessity thanks to the bipolar aspect and my general medical needs at given times.  Those who know me will understand the fact that I have to set alarms in order to remember to take medications, that is when pain or symptoms don’t dictate that I have forgotten. When in school I have certain days that things have to be done, granted procrastination plays a part but I still get things in on time and my GPA is sitting solidly in the mid-3.0s (not perfection, which some of you also know is something I strive and chastise myself for; a procrastinating perfectionist is what I call myself). Basically, as the title of my blog so eloquently states..there is a madness to my methods and if you stick around and pay attention, you will see and understand. Thank you for taking the time. 

The Chronicles of Biff - Chapter 6 - 06/14/12

**You may want to pack a lunch, this may take a minute or two**

Over the past 2 years I have to come to realize that my disease is very enigmatic in its genesis, cause and treatment. There is no set medication or therapy or restriction or procedure that can, completely, cure it. If you look up any number of sources online or talk to any doctor who knows their stuff (as my previous doctors did) you will see this. Basically there are two things that are consistent across the board. 

1) Alcohol will make it worse even if it isn’t the cause (which it is in my case) and 

2) the recognized treatments are no alcohol, modified diet and dietary restrictions and pain management. That’s it, cut and dry.

I have many new friends on here who are also sufferers of this and who feel my pain figuratively and literally and some of them have taken steps to alleviate it by having a procedure called a Total Pancreatectomy with Auto Islet Cell Transplant (or TP/AIT) which basically removes the pancreas and hence the source of the pain. It requires a lot of maintenance, so I understand and I just don’t think I am ready to take that step yet.These same friends and others on the numerous message boards and groups that I am in, have told horror stories about doctors not believing them or ordering unnecessary tests or accusing them of just wanting pain meds or it was all their head; I couldn’t fathom that because mine were so awesome.

My main doctor, Dr. Molly Imber, believed me from the beginning that something was wrong and, according to my gastroenterologist Dr. Teresa King, was very stubborn and determined to figure out what was wrong. Once diagnosed she did whatever she could such as finding what meds and such worked. If something went wrong, I’d go in, she would listen to me and answer my questions and concerns and then give me options on what to do. It was a rhythm we got into; a general health check and how the pain levels are. If stable, forge ahead, if not consider options including increase or change in pain medications.

But since January I have been forced, thanks to health insurance premiums being beyond ridiculous, to use the VA for my treatment and meds basically since I can. So I figure that I go in, they look at my previous records, do whatever verifications that they need to do and continue treatment because for the most part it was working. Sadly, that was not to be the case.

The first thing they did was to change one of the meds, the Oxycontin that had just began to work because they, in their words, use another med (Morphine) for pain management and do not believe in the other. Okay, fine. I am open minded to this so if it works, fantastic. But deeper analysis and probing showed me that they actually may be concerned with the addiction factor of the Oxy so they try to get people off of that and on to other stuff. Fine, I’m flexible. Whatever works. Then I go to their “specialist” who proceeds to ask me questions like this is my first rodeo. So I patiently, gritting my teeth, answer his questions. I show him my massive folder of medical documentation and he proceeds to look at one test and one set of notes and then orders a, seemingly, unnecessary test and then says he wants to prescribe an “alternative” pain medication to try and get me off the other long-term one mentioned above.  I am all for trying new things in addition but I see no need to mess with a working formula if the parameters are comparative.

Now today, when I call in because I am having further issues with the pain and want an appt as I did in the past, the nurse proceeds to lecture me about “masking the pain with pills” and that there are other things that can be done like diet. I stated that I understood that but I wanted to talk to him about it. She says I need to talk to above mentioned clueless specialist as well as talk this alternative medication (which was actually never dispensed). I would’ve sat and debated more but I was tired, frustrated and of course, flaring in pain by that point. Needless to say I now understand, in a small way, where my new friends were coming from.

I do not like having to be on all these pills, especially the pain ones and if there were another way to make my life more comfortable (and keep all my innards intact) then I would do it. But they work. They make my days tolerable and my life some semblance of livable. And when it comes right down to it, that is basically all the treatment that can be given. Manage pain, aid in digestion, modify and follow diet and most importantly do not drink.  I do all of this. I know all of this. This has become a major part of my life so I am familiar and aware, and lately it seems more so than my new medical “professionals”. 

Now don’t get me wrong, I am thankful that I had the VA to fall back on. Its is coverage, treatment and medications at a relatively low cost. I know that there are those out there who would like/need any kind of coverage. So I am completely and totally appreciative of that. I guess I was spoiled and the salad days are over, so to speak (no mom, I’m not eating salad yet even though I should)

Just another day in the life..

Thank you for indulging me in this rant.

8.5.7

44 and Counting

Upon hearing my diagnosis one of the first things that I, apparently (I was still “influenced” by anesthesia) said was...

“Well, it’s been a good run”  Indeed it has.

As I stare down the barrel of my mid-40s, I get reflective both in nostalgic remembrance and in where the fuck did the time go.  I have a lot of memories and subsequently a lot of stories. Someone once told me that you could bring up damn near any topic and I would have a story for it. From skinny dipping in Utah to storming the castle at Edinburgh, it has been a ride.

Recently though a couple of very close acquaintances brought up some points that had not crossed my mind yet ring very true.  One stated that when my symptoms first appeared, my life was at the best point that it had been at in quite awhile. I had a great job, a girlfriend, a stable living situation and inner peace with myself, my past and my future.  She then went on to state that what if my body was holding things back while I dealt with them and once things were stabilized, it couldn’t hold them back anymore. My body wanted to make sure that I was at a good point and had experienced life. And as my other dear friend stated “At least you got to live a full life before this”,

Truer words were never spoken. My life has been a figurative and literal journey of memorable proportions. But don’t get me wrong, this doesn’t mean that I’m done. Not by a long shot. I have not given up, I will not give up. Not now, not ever. Anyone who knows me knows that I am a stubborn one and I am not going to let my body’s shortcomings stop me from doing the things that I am still able to do. Yes I do have limitations but they are hurdles not roadblocks.

I have often said that life is one long fun road with occasional serious off ramps. I say this mainly because I think that some people take life too seriously and you have some fun

“Life moves pretty fast, if you don’t stop and look around once in awhile you could miss it” – Ferris Bueller’s Day Off

So as I move into my mid-40s, I see this as more of a turning point. I’m not done living yet; I don’t even think or feel like I’m halfway done. That long road of life may now be under construction, but it is not approaching a dead-end; it is simply a detour and rebuilding towards a different path. I may get frustrated, I hate road construction, but I will try to keep it moving forward. Like a cyclist, I have people along the way cheering me on. The road may be going downhill, but I’m picking up speed.

“What a long strange trip it’s been” –  Truckin - Jerry Garcia. (The Grateful Dead)

 Indeed it has.

8.5.7