Tag: Surviving GVHD

2018 we cannot be friends.

theycallmebetty1 Comment

I wrote a little story a while ago.

Vowing to never write about the coming new year, because, well that is what every writer does for some strange reason. I tore into a 2200 word negativity rant filled hate mongering dissertation over my fear of the upcoming new year instead! Which really is the same thing as simply writing about the new year which is what I vowed not to do and yet I did anyway. I know confusing huh?

Call me a little gun-shy about this upcoming year but lets face it my track record over the last four years has been pretty dismal. I must say that I am ashamed with my behavior. After reading all 2200 words I realized I didn’t know who the person was staring back at me through those paragraphs. I really didn’t like him very much as he reeked of hopelessness and despair. Not the person I portray myself to be!

I admit it, times have been hard, I have hated some of those times very much but after reading over and over the nastiness associated within, to think my fingertips willingly splayed such painful rhetoric expecting to share it upon my page has forced me to look a little farther inward. To try to find myself and the reasoning as to why I harbor so much hatred!

Am I excited by the prospect of 2018 and what it has to offer?

No!!!!!

No I am fucking terrified of another year with more unexpected disappointment! Or maybe after all this time disappointment, disaster, despair should simply be expected and that’s why I am so tense! Wondering day and night as to whether or not there is more tragedy waiting for us just around the corner! I am constantly worrying about our future, her future, our children’s future and all the emotional toil our lives hold on a daily basis! I wonder if I can take on more? Is it humanly possible for me to handle another loss, another failure, another misfortune! Is there room for me to place more emotional unrest inside my soul?

I found myself mumbling; Fuck you 2018 every time I read someones cheery uplifting post today! I would start grinding my teeth the moment someone, anyone spoke of this dreaded new year and it hasn’t even started yet!! That is just not me!!!

I want so badly to embrace this upcoming year, to feel hopeful, promise and opportunity! To know our future looks bright for all involved. But even as I am writing this my chest hurts, its hard to breath and the anxiety associated with wishing such selfish thoughts when I know there are thousands suffering in this world tonight. Struggling much harder than I. It is more than I can take right now. What the HOLY HELL!!!

Somewhere I learned the valuable lesson of keep your friends close and your enemies closer.

2018 you are not my friend, you are my enemy. I fear and loathe you all at the same time. You will as other years have, confuse me with your tactics but I think I am ready. For this year over all the others I am prepared to look for the signs, prepare for the attack and brace for an emotional impact. So 2018 I am going to keep you as close as humanly possible. I am taking the first shot! Hopefully it finds its mark.

Straight across your bow.

You have been warned 2018. Dont fuck with me.

So here it goes.

To all, I hope you have a safe and wonderful New Years Eve. May 2018 bring you all prosperity and joy, happiness and love, humility and the feeling of being content. My family and I love you all, we are grateful, so very grateful for the tight-knit group of human beings who are always on our side, propping us up though we may fall, standing next to us as we celebrate minor triumphs and cry with us over steady set backs. There is no place that I would rather be than right alongside all of you and my family. The day will come when I can pay all this forward and I cherish the moment I am able.

To good health, a grand heart, and steady path.

Happy New Years to you all..

Take that!! Suck on that 2018!!! Yeah buddy you aint never getting up from that right hook!!! Whoop, whoop!!!

Shots fired, SHOTSSSS FIRED!!!!

nOW pISS oFF!!!

Seriously though I am wishing all of you a very blessed 2018….

With much love ~Betty~

8 Heads in a duffle bag..

theycallmebetty3 Comments

Although my fingers have been fairly quiet as of late my brain has not. There is this strange struggle that goes on inside my head on a daily basis. It is as though two entities are fighting for the right to think and during that struggle neither seem to be able to act accordingly.

For the most part I have spent this entire process of dealing with the arduous task of caring for a Leukemia survivor, GvHD patient with positivity and faith. Struggling with the highs and lows, while finding strength and solace in my abilities as a caregiver with an upbeat attitude has helped immensely. Jacy and I have been so blessed to meet many of the people we have spoken with through the long reaching tentacles of the internet. Knowing that simply by sharing the human condition you have helped another is humbling to say the least.

But what do you do when you’ve reached what feels like the end?

Now I know deep inside, and I mean right now really deep inside, I fully understand it is not the end, that I not only want, but need to continue being open and honest. But I am struggling. Badly. It is why the argument inside my head continues on, it is why no matter how hard I try my fingers just can’t seem to find the keyboard, creating words that are meaningful to others while allowing me an avenue to vent, love and share with solicitude.

Constantly I stare into the screen and wonder what it is that is hindering my thought process, why do I feel as though I am constantly drowning and the only relief on the horizon is a shadowed man throwing paper life preservers?

To say it’s all too much that life is more than a person can handle has and always will be a cop out to me. I have been to other parts of the world, stepping from within the spoiled confines this country and my own personal bubble for which I reside affords us all. Witnessing true abuse of the human condition, desperate pleas from those who reside in squalor, with no more than two pennies a pair of shorts and no food to their name. Governed by those who care not about their people’s physical health and financial wealth but furthering personal gain. So I know, there is more inside me, more to give to my family, my community, my friends and my life. I know because I have seen true struggle and what I am facing inside is a mere droplet inside a rain storm.

Yet, struggling I am.

I used to go to work and hide my pain. It is a great place to hide ones inner demons as any day surrounded by good, like-minded people can bring about a recharge of the inner soul. One purpose, one goal, be there for the community and its citizens, save a life, save property from the destruction of fire, or help someone simply change their smoke detector batteries. The privilege of caring for one’s community on a daily basis is amazing. Spending 48 hours winding through the autonomous machine of daily chores while finding comfort in the twisted humor of your co-workers is electric! Starting a new guy down the right path while helping to refresh the volumes of knowledge 23 years has stored inside your head brings renewed life.

Instead as of late I’m feeling like a cornered parole, unable to do anything correctly while nervously twitching at the thought of going back inside. Working for a city (management) that no longer appreciates the enormous amount of effort we place with so very little in return. Refusing to acknowledge our continued attempts to assist not only them but the public to the best of our abilities while suppressing our very innate need to always help. It is demoralizing to say the least when you feel a department many have worked so hard to bring to the forefront is slowly slipping backwards and there is nothing you can do but shake your head and watch.

Coming home has always been the respite from the atrocities seen at work. A safe haven if you will where one can leave their heavy gruesome baggage at the door. But it seems I can no longer walk up, drop the bag and not worry about it for a few days.

It’s like 8 heads in a duffle bag (movie reference), you know at one point you held the bag but now it’s gone missing and no one needs to see what’s inside. So what do you do?

You panic.

Therefor in a constant state of panic I am! Oh I may look cool on the outside (or really angry and moody as has been brought to my attention) but inside a constant state of disarray exists! No longer am I able to complete a single task as my life spins out of control. Raising these kids mostly on my own, caring for my wife using the same skills acquired over many years at work, the line begins to blur between work and home. With that blur the demon heads are no longer at rest inside that bag on the porch. They come out at all times of the day or night. Some days they bark at my inner walls, clawing and screaming so loud I cannot turn them away and so, I bark back. For those who know me, who know me well, when I turn on something I do it in grand style. It is never pretty, it is mean spirited and hurtful. It is shameful to say the least. Then the bag disappears and more panic sets in as I must find it and keep it from anyone else. It can never be seen! EVER!

So here I am, still left wondering.

What is in store for our family? What is in store for their lives? How am I supposed to protect them from the boogeyman, that hidden danger or beast waiting just outside the door? What lays ahead for my life and how am I ever supposed to keep moving forward? I mean, I am moving forward aren’t I? I wake up every day and put my feet on the floor, pull up my big boy pants and move through the day just like everyone else. But where is the break? Where is the respite we have been told is coming? When does my wife get a break from her constant inner struggles which are also mine? When does she no longer feel pain? When does her body become strong again and she no longer needs to live on a regiment of medications that leave her weak and sick? When do we see the pot at the end of the rainbow? Hell I would even be happy to just see the fucking rainbow!! Why has my life been hit so hard, and why does it continue to get hit time and again? What the fuck did I do to deserve this and if it’s a Karma thing and it’s me, why is my family paying the price, over and over and fucking over again!! Can we please get a break? Can we please just have our lives back????

I am angry, angry as hell and I feel as though I can no longer hide it! People tell me I need to take time for me, hell I tell others to never lose who they are and work hard at taking time for themselves to keep that spirit alive! But lately taking time for me feels like being trapped in a buildings revolving door and I can’t get out! Spinning so fast I can only feel a moment of either freedom or pain, never able to fully step from within the confines of the door to one side or the other.

I worry so much about my children and all they have been through, I am in constant worry for my family and all they feel as we still make our way slowly down this forsaken path of a leukemia nightmare. I worry for our ranch and this life we built as I find struggles in maintaining its future for our family. I worry for my job as my passion has waned through this continued personal battle. I worry for myself as I push it all down deeper inside.

Please don’t tell me God doesn’t give me anything I cannot handle. That is a twisting of the actual verse Corinthians 10:13 referencing sin, and sinful choices. That although sin is irresistible, the lord will always give us an escape from such temptation.

So what is the end game? There has to be an end game right?

Is the end game hidden within 2 Corinthians 5:10

For we must all appear before the judgement seat of Christ, so that each of us may receive what is due us for the things done while in the body, whether good or bad.

If that’s the case then my wife is saint!!

But the question remains, why must our family continue to struggle? Haven’t we all had enough?

Why do I lay my head down at night and have mild panic attacks because my insides feel tormented. My mind never shuts down and I feel as though the other shoe has yet to fall. Why must I live in this constant fear? I don’t want the other shoe to fall, it cannot fall!

“Deep breath”

Thanks for taking a moment to read this and witness me losing my mind.

I have stored that up for a long time now. I just needed to get it all out. I know the answers will come when they come and there is nothing I can do about it. I know there are others who feel the very same way I do, and I hope if you are reading this you know its ok.

It’s ok to ask why, its ok to feel inadequate, its ok to feel as though you may be failing, It’s ok to struggle and its even ok to carry the extra load.

You know what’s not ok?

Keeping 8 heads in a duffle bag on your porch.

Yeah that’s never ok…..

You can never forget you!

theycallmebetty2 Comments

Today I went fishing.

There are three things in this world that I love participating in more than anything else.

  1. Riding/working horses
  2. Fishing
  3. Riding a motorcycle (any motorcycle)

Peaceful water cracking against the hull, birds of every variety flying overhead, some even landing near our boat. Seals breaking the surface to say hello and cattle off in the distance grazing quietly. Sitting silently with two lines in the water my eyes dart back and forth between the fish finder as I monitor the water temperature and the picturesque surroundings on what had to be one of the most perfect mild temperature, no wind kind of days. The only thing that would have made it even better? A bigger boat so I could duck inside and take a nap! Ha!!! Old guy perfection right there baby!!!

So why is this so important and why would you the reader care?

The other day while speaking to someone the topic arose as it usually does in regards to personal, family oriented, doctor/cancer related struggles that life had become unmanageable. We all have struggles in our lives, some more serious than others and even that severity can be tempered through one’s own personal perception.

We commiserated over many of the same issues in regards to holding things together when all seems lost or hopelessness abounds and as I switched from a willing partner in the gripe arena to sound listener I could not help but forward some very sage advice after asking if any advice offered would be received. (I mean I DO have a little experience in this arena) Thankfully the answer was yes.

I reminded this person that as life is crashing around and people are no longer meeting your expectations you may need a break. As the hill gets harder to climb and you find yourself crying more than laughing your brain is saying enough. When the only thing you care about is the immediate and everything else can just go to hell it is time for an intervention. So what must this person do to quench the fires as it were? You must remember exactly who you are, don’t ever forget WHO YOU ARE! It is time for you to do something for you!

Take time to find that one thing (or three) that reminds you that you are you! I guarantee that stress combined with an overachiever mentality and over time you will forget who you are! Overwhelmed by the many tasks that lay before you on a daily basis you eventually end up putting little old tired you in the closet while hiding behind this public persona superhero cape! It really beats you up no matter what, but if you’re the type that’s not a quitter in any way, shape or form the weight upon you is enormous! So do what you have to do, but find that thing that makes you, you!

You were somebody before you got married! You were hopefully somebody you even liked and enjoyed hanging out with before life came crashing down! I know in the beginning you are going to feel guilty, but tough shit!!! In time that guilt fades, you begin to balance back out and when the world is spinning out of control you have the fortitude to handle it!

For me it was an accidental stop at a local eatery in town for breakfast on one of those “spinning out of control” days. I felt guilty walking through the door, I felt guilty spending money on myself for breakfast, I felt guilty because I needed to leave for Stanford, and after I sat down, alone, I felt guilty that my wife wasn’t with me, and that I was eating out without her!

But you know what else happened?

I felt better after the first cup of coffee that I didn’t have to make. The waitress was kind and could see I needed to be alone. I turned off my phone and watched the news in the bar next to my booth. I ordered what I wanted (yeah cholesterol be damned) and ate it slowly, with a smile. It was 40 minutes out of what turned into a nightmarishly insane day and it was worth all 2,400 seconds. I walked out, sat in my car and realized I had forgotten who I was.

After that day I made a point to remember to ride a horse, go fishing with or without kids, and ride a motorcycle.

You see without knowing who I was, how on earth could I be anything to anyone else? I could try, but instead of success I was merely adding more to an overflowing plate. If I spend time at any one of those three things, from a few hours to a day or two, there is nothing I cannot handle when I come back. I know who I am, my feet are firmly on the ground and I have said; its ok to give myself a timeout now let’s tackle the world.

So today a fishing trip turned into a recollection which turned into a blog post which turned into me being able to put my head down tonight, get a good night’s sleep so that tomorrow I can wake up, smile, put my feet on the floor and tell the world it’s ok, you can throw what you want at me again.

I’m ready.

On a side note, you don’t have to be struggling mentally, physically or living through some personal hell to remember to take care of yourself. Life is hard, and for some reason we make it harder for ourselves by forgetting the only person who can help us navigate our very short time on this earth.

That person is you! Make the change, then when the hard times do come you are miles ahead of where I was in November of 2013 when our world came crashing down.

~Betty~

An Incredible Journey

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I am on an incredible journey and I don’t know why.

Why was I chosen to walk this path filled with so many unexpected surprises? Why do I struggle with the same challenges day after day, feeling as if there is no reprieve? Why I am even allowed a new morning when others for who I look up to, revere or admire are facing their last days or have simply vanished, passing from their earthly constraints.

Every day I awaken, place my feet firmly upon the floor and stand up. I then make a conscious decision. Do I carry on, or give up? Do I meet the day’s challenges or pull the sheets over my head and cry foul? Do I continue to regress emotionally or do I say fuck this, square up my shoulders then throw a middle finger towards an overwhelming temptation to just quit?

Lately it has definitely been the latter. I’ve been putting on a good face while struggling to get out of bed then smiling the smile, telling the same old jokes, letting the actions or words of some bring me down and basically feeling as though I should be giving up. I am not happy, not happy in one little bit.

The darkness has crept in and I haven’t seen any light for quite some time. Between the duties of caregiver to my wife, caregiver to the public and struggling to remain a vigilant father while my children struggle with their own feelings for which they have no knowledge or control over in regards to our current situation. I have slowly faded away. Not all at once, but little bits at a time.

It feels like constant darkness in my head, every moment of every day and there has been nothing I can do about it.

So you begin to ask; if there is so much darkness why do you proclaim this an incredible journey?

Because like it or not, hate it or love it, detest its existence or clamor for more, it is an incredible journey!

As human beings it is our job to grow and share. It is not a right, you are not rightfully given another day on this earth. You have no right to prosperity and wealth, you have no right to a job, a house, a marriage, a life of any kind. You have to earn it!! Then grow and share through the process!

That’s right, I know this may come as a shocker to some, but your life is earned. What you have accomplished by the time your final day comes (and it comes for us all) is 100% purely up to you!

My grandmother came to me in a dream last night. (Don’t get all; holy shit he’s gone off the deep end) Although I know dreams are a conglomeration of memories, subconscious thoughts, neural transmissions and blah, blah, blah. It was exactly what I needed at just the right time.

My grandmother on my mother’s side was a very interesting woman. She graduated from Stanford during a time when women were considered less than men. She dated a few notable individuals of the time. She made her own way through life when in her forties her husband, my grandfather died of a heart attack. She had a very successful career in finance when women were considered nothing more than secretaries and used her skills to set an example. She traveled the world going where she wanted when she wanted with nothing holding her back!

As a child I vaguely remember her stories about life, travel and the many lessons she put before me. Whenever we visited she used buttons to teach us about money, plants in her greenhouse to teach us about life, books to teach us about literature and conversation to teach us about the human equation. I woke up this morning wishing I was 8 again so I could hug her and listen more intently.

She wrote a book about her life. I have it on a shelf. I have read twice and when I awoke this morning it dawned on me that I may need to read it again. I need that emotional connection, to relearn what it means to be me, throwing caution to the wind, standing up for and protecting my ethics, beliefs and way of life no matter what anyone else says because my life is mine. To help stay on track, for in my heart I still believe that we all learn from one another’s triumphs and mistakes. During this crazy time where our socializations seems to only focus on a small device that spews nothing more than negativity an hate tearing the very fabric of this country. Maybe one small voice, writing about his struggles in an obscure seldom read blog could remind us there is a positive, no matter the circumstances and that choice would mine to make. No one could take it away.

My current situation has a myriad of balls all up in the air, a juggler’s nightmare as gravity brings them towards me at a dizzying pace! It constantly comes up in conversation when people say; I don’t know how you do it, in regards to the struggle associated with raising four children, working as a firefighter while caring for my wife with stage four Graf vs Host disease. Watching as she withers away, gets strong then withers away again. Is frustrated with the fact she is going blind yet bravely and with great fortitude works her way through daily activities for which she refuses to give up on. She is strong, brave and amazing.

It (the how do you do it comment) is a simple enough statement, it is never meant with any disingenuous undertone, and my response is usually almost always; it is what it is. I say that as to not offend anyone or hurt their feelings. But my real thought is; how could I not! This is my life, my family, my wife, what the hell else am I supposed to do?

I realize we live in a decaying society where it is easier to point a finger, post it on Facebook, complain publicly, give up and run away than it is to stay behind and fight for the ones you love! Fight for the life and family you have created! To me that is a sad moniker of what our lives in this country have boiled down too. If the going gets tough-make a spectacle then QUIT!

There are those that wonder why I write so openly about my personal life and if it affects anyone close to me.

Yes it does affect those close to me, but I have always felt deep inside it was my obligation to share everything. Why? Because I have yet to see one writing that adequately covers or assists the multitude of struggles and emotions I am feeling. Everything ever written in regards to being the spouse of a Leukemia/Bone Marrow Transplant survivor is generic! Nothing even remotely touches the many facets of life this horrible disease along with recovery post-transplant throws in your face. It is all glossed over as to not scare you. Well guess fucking what? Life is a scary thing, now throw in all the new challenges associated with a wife whose body is trying to kill her and well you better sack up and learn from someone who has walked the path! Stay firmly away from those who wallow in a dream world where after treatment life just carries on as if nothing ever happened!!! Which is where I think I come in, for those who want the truth and seek it through my writings.

So then I wonder do people think my attitude comes naturally. My ability to cope? To understand and carry on?

Because it takes work, patience and the ability to listen, not pass judgement when you can and keep an open mind. It takes and incredible amount of faith and that faith is tested, over and over and over again! This journey I am on reinforces all those things on a daily basis!

So then my mind digs deeper into that simple question of “how do I do it” and I wonder some more. Do people believe that being a firefighter comes naturally? That we are all born with some obscure kryptonite type gene that predisposes us to the atrocities of the human condition? You see, firefighting, that is the easy part! It always has been and always will be. You still need to understand basic chemistry and have a few years’ experience using those skills to know exactly when and where placing the right amount of water at the right time will put out the fire while saving lives and property. This professions education is real, the long hours studying and keeping those skills are mind numbing. As a firefighter you need to become proficient at a little bit of everything. Building construction, demolition expert, code compliance, hazardous materials, chemist, investigator, auto mechanic, auto technician, computer genius, locksmith, heating and air technician, heavy equipment operator, financial advisor, ER doctor, supervisor, pastor, councilor and truck driver. If you added up the salaries of all those things each member would be worth over a million a year and we can go into the private section with our degrees and make three times what we struggle to earn in our jobs, but that’s not why we do it. It is an overwhelming need to help people. But as if that load of constant learning wasn’t enough, and as I said, fighting fires using all that education is in fact the easy part, you know what the real struggle is? The thing that keeps us up at night, the thing that not one mother fucker prepares you for that haunts your very soul when you lay your head down on that pillow?

It is the endless onslaught of death that we must deal with on a regular basis. Dancing in our heads like ghosts from Christmas past. Dealing with them any way we can, through counseling, good friends and time away from the big green fire engines. It is also coming back the station and reading in the local paper that our city council doesn’t support us in the least. Or we are attacked by the public because we go as an engine company to the store to purchase our supplies which we pay for from our own pockets or that our retirement is some magical golden egg that is draining the state’s coffers when we pay an ungodly amount of money per month out of our own pockets to fund it. Its understanding and coming to terms with the fact we are not funded in social security therefore we only receive from social security what we put in prior to joining the fire department. But hey none of that matters as we lay our heads down at night, trying to erase all those horrible images while also knowing we are unsupported you know why? Because most of us won’t live past 60! It is a statistical fact we will all contract some form of cancer from all the chemicals and carcinogens we have absorbed or inhaled throughout the years! But no worries we’ll just keep pushing it all down deep inside so it doesn’t show when we get home! That way our families and spouses won’t see or feel our pain, so they can have that great husband or father home for few days all happy and cheery like normal families!! Right? Right?

Why do we do it? Why do we keep coming back for more? Because we wish nothing more than to make that one save, that one moment in life where a positive impact on another human beings life has been made. So despite being treated like shit by our public officials, living with our deepest emotions, we can rest easy knowing another is alive, enjoying their family because of the sacrifices we willingly made. Fulfilling our own prophecy through hard work and dedication. Bringing life full circle.

This journey has allowed me to witness my wife fight for her life while I hold her hand, struggle as she struggles and rejoice as she rejoices. We don’t always agree on the topic of rejoicing but through this journey I have learned the importance of shutting my mouth while allowing my spouse to find the joy she needs over little accomplishments. I have learned to keep my mouth shut as she sheds tears, relinquishing my need to fix things. For there is nothing I can fix and only a shoulder to cry upon or an ear to yell into is needed at that moment in time. I have found understanding I never knew I had as unwarranted venom flows from her mouth one minute and angel’s wings sprout lifting her high over her pain another. I hug her when she needs to be hugged and leave her be when she wants nothing more than her headphones and a television show she has seen 100 times so she can listen to it as her eyes will no longer allow her to watch.

This journey has taken a toll on my life and although as of late I have been angry over its direction, angry at the life we now lead, angry at myself for being so very fucking angry inside!! ALL THE DAMN TIME!! It is still my journey, I am writing (quite literally) my own story. It is up to me how it ends.

At the end of the day, when my time has come, I want my children to look back and not remember the struggle. But remember their father handled it all, with strength, grace, positivity, faith and a plan. Ok let’s face it a few good old fashioned Irish/Italian hot headed fuck you fest temper tantrums as well. Then I want them to be able to go to a bookshelf, pull out a well written book, open the pages and read the story of my life, their lives, and the lives of those who loved them unconditionally. I want them to ride along in this journey page by page and remember the way I remember my grandmother.

Does labeling this shit storm we live in a fantastic journey mean I will become more positive? No, it means I know who I am and what I need to do.

Will my mood cease to be down and at times dark? No, I am human and with that naturally comes forms of negativity. It is life.

The blog has been dark as of late because I have been struggling with so many emotions tearing me up inside. I am sorry I haven’t been able to share for those who reach out to me on a regular basis. Time to light it up again, hit that keyboards and continue along with this fantastic journey.

God help me…

 

 

 

 

To go gentle into that good night.

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Do not go gentle into that good night, Old age should burn and rave at close of day; Rage, rage against the dying of the light. Though wise men at their end know dark is right, Because their words had forked no lightning they Do not go gentle into that good night. Good men, the last wave by, crying how bright Their frail deeds might have danced in a green bay, Rage, rage against the dying of the light. Wild men who caught and sang the sun in flight, And learn, too late, they grieved it on its way, Do not go gentle into that good night. Grave men, near death, who see with blinding sight Blind eyes could blaze like meteors and be gay, Rage, rage against the dying of the light. And you, my father, there on the sad height, Curse, bless, me now with your fierce tears, I pray. Do not go gentle into that good night. Rage, rage against the dying of the light.

From The Poems of Dylan Thomas

 

This poem has resonated with me since that of a young man. I have had it stuck in my head for months now trying my hardest to determine what it means to me.

It brings about stirred emotions of an unwavering inner strength, tormenting whispers of the unknown, and an inner fight that arises much like a demon awaiting a moment to reign terror upon those who doubt its power. For there are those who will challenge your age, your wisdom and use the word to chip away at all that you are, have accomplished in life, or look to become. They don’t understand this poem speaks to everyone, not just those who proudly wear the wrinkles of time.

And so with that said I write..

The assumed stands before demise.

So expected and anticipated according to annals of time that my brain is washed by hollowed expectation.

Waiting and waiting to crumble so frail. My strength gone from age’s elastration.

But I refuse to go gentle into that good night

I have too much to lose by allowing forked tongues in shaping my destiny

To live, to breathe, to gather life in a bottle and sip upon its soulful nourishment

A man whose wrinkles should bring about empathy while disparaging apathy

I am strong, I am whole, I am man, I shall move forward no matter life’s dreadful weight

A second half of life laden with baggage and yet its burden bears no consequence 

I cry for those entrapped, ones who are youthfully pointed towards, a folly of jokes and insults fall upon this wasteland created through a wrinkle of time. Burdening a man’s soul it does, with stereotypes of ancient freight.

For they too shall bare ages haunting truth and most likely through inner weakness go gently into that good night

Sickle in hand, cloaked from light.

But not I, for quiet has never been my right.

 

It feels as though lately people are dying all around me, I can no longer ignore this truth. I am starting to feel the pressure to survive at all costs. Every time I turn around another child has gone, another mother is ill, another father has crossed over to the other side. Some I learn from phone calls or social media and others because I was there, my hands unable to help. It has brought me to fully understand that I can longer hide behind disbelief, a realization rings solid that yes we all really do have an expiration date.

For years we have known this to be true; but we never think it could possibly happen to us. It can and yes it does. In the blink of an eye, this glorious gift given us from God can be taken away. Our hearts beat loudly, our minds work endlessly and yet it is all for nothing once our bodies have vanished.

Every day driving into town, there is always something that reminds me how much I love life. Our world is very complex and filled with so many wonderful things, I just find it hard to fathom that at some point in time I will no longer be here to enjoy the majesty that continually surrounds me.

I have seen and felt so many things in this short life, more than some less than others. I have cried until there were no tears left to give, laughed until my stomach felt like one giant cramp, put my fist through a solid door and thrown a wrench through a wall in shame and or anger. I have hugged another, held out a welcoming open hand and used those same hands to bring pain upon another’s wrongful deeds.  I have screamed towards the sky, lied to appease emotions, and mumbled quietly at the voices in my head, begging them to leave me alone. I have not only felt my pain, but your pain as well because of a sworn life choice. I have sat befuddled by life’s obstacles, gazing upon an open field wondering, praying, and yearning for answers to so many questions. Some days the answers come, most days they do not, and then there are days I believe obstacles have been placed in my way to keep me from myself.

In my humble opinion.

This life it was not meant to be easy, it was meant to be experienced.

You may not currently like the experience, you may not enjoy the outcome at any moment in time. But know this; this life, it is yours. It is not someone else’s, it belongs to you and you alone. It is up to you in determining how you see life’s obstacles, how you react when life’s ugliness knocks upon your door. Do you stand tall, find the answers and move forward? Do you strive to provide positivity, a ray of light and hope or do you bury your head in the sand ignoring the life around you?

Do you simply become that who goes gentle into that good night?

I have and always will choose to fight.

It’s in my nature, it is who I am..

Who are you?

 

 

God, could I get a little help? Please……

theycallmebetty11 Comments

I have a confession to make.

I think I am mourning the loss of my wife.

Over the last couple of weeks, the two of us have held some very emotional and poignant conversations in regards to her health, my mental health and our families future.

She is by far the strongest woman I know. Her courage and tenacity is second to none. This shit sandwich she’s been handed and forced to eat time and again would leave most average humans gagging while pleading for the feeding to stop. Yet she bites down, grits her teeth and trudges through every mouthful!

I try to remind myself that God will never give us anything we can’t handle.

The other day during a conversation with her doctor she told him she’d had enough! It was time to either get busy living or get busy dying!

Think about that statement! A mashing of words spoken with the seriousness of an appellate court judge! No bullshit, no grins or giggles, no carefully chosen not wanting to hurt anyone else’s feelings words! This is a line in the sand and no one had better fucking cross it! For the first time in a long time I didn’t laugh, find a joke or even smile a nervous smile. She was making a stand and if you truly know my wife then you know never to cross her when she makes a stand!

And I think once again: God will never give us anything we can’t handle.

The last couple of days have been harder then normal. My irregular heartbeat is back, (which always leaves me panicking) my stomach is on fire and the head is pounding pretty hard. These are all secondary reactions to an emotional outpouring trapped deep within this sack of skin. I don’t know how to adequately express what I’m feeling or even describe it’s magnitude which tears my innards apart! Three long years I have been holding it together! Three long years I worry about tommorow and what it may bring! Three long years have been the worst juggling act I could ever have performed, always feeling like I am one hand movement from dropping all the balls.

Three long years and I continue to think: God will not give us anything we cant handle.

In that time I have gained 25 pounds, developed sleep apnea which leaves my chest and head hurting every morning and I have cried more times than I care to remember! Seriously cried like a baby! I’ve cried in the truck, the barn, while working a horse, after waking up from a nightmare to find she isn’t there only to quickly realize she’s at her dads for treatment! I have cried while blogging, in my dorm at work, after a call with a cancer patient, while reading a book and even while taking a shower.

To be honest I cry at everything nowadays! Like some stupid, weak, lovelorn teenager!! Show me a stupid animal video! Hell here comes the waterworks! A love story movie. Tears! Wedding videos! You guessed it more water!! And you know what makes it even worse?

I am angry as hell, looking for someone to blame and yet I continually tell myself; God will not give us anything we cannot handle!

That anger leads me to yell at our kids way more than I should, I yell at drivers on the road and sometimes I daydream someone will cut me off so we can fight! Senselessly hoping not to win, but instead to feel the stinging pain of loss. I know it’s wrong and because I know it’s wrong I work really hard at tempering my emotions!! But this long term tempering is wearing me the fuck out!! All political rants get deleted from my FB feed so I don’t get angry. If an argument starts I do my best to walk out of the room or tune it out by acting dead or stupid, much like a fainting goat! I have figured out how to curb all this anger when cornered by using a tried and true method of striking first with wicked biting sarcasm! But sometimes that bites me in ass when I take it to far and then hurt someone else’s feelings! I can’t win! Developing these weird coping mechanisms are only piling more worry and angst on top of an already over loaded emotional mountain! Yet I keep doing it because going through this joint struggle over the last three years I have found there are more important thing for me to focus on in life! Like waking up, or breathing!

And there I am wondering if God is really giving me what I can handle or if it’s all a big fucking lie!

Today really brought it home for me and it hit me harder than before. A friend posted a picture of my beautiful wife from five years ago and through all my inspirational quotes, kind words and such I realized why I am in this strange place mourning for the loss of my wife. Not that she is gone in the traditional sense of the term, because she obviously isn’t, but for who she used to be! That woman, that confident, beautiful woman who could teach 30 kids in classroom, come home and ride horses with me and the kids, whip up a dinner from absolutely nothing, then toss her hair into a pony tail, throw on some clean clothes and let me strut her sexy ass out on the town!

I hate what the drugs have done to her, I hate what this disease has done to her, I hate that everyday she wakes up and no longer recognizes the person looking back in the mirror and sobs. She’s had me cover all the mirrors in the house so she doesn’t have to look at herself and that makes me mad at God. I hate that she shakes so bad she can’t hold simple items and there is nothing I can do help! I hate that she struggles to get up, walk or climb stairs! She was once a toned, hard fitness instructor and now is a frail version of her former self! I hate that I feel like I am failing her, and I can’t do a thing to make any of this any easier in any way! I hate that she doesn’t know how beautiful I still think she is or how she continually stresses over some imaginary thing that should drive us apart!

I hate, I’m angry so I hate some more and I think again; God will not give us anything we can’t handle.

The realization that I am also mourning the loss of OUR life together weighs like an anvil around ones neck. I go to parent meetings alone, doctor appointments alone, after school activities alone and rodeo with the kids alone. She is miserable because she can’t be there for her children and it is a horrible heavy guilt for her and I am torn up because I can’t imagine how that must feel as a mother. Now, I don’t mind being alone, it’s good to be alone every now and again, just not all the time. Thankfully I am surrounded by some of the most wonderful, caring families anyone could ever ask for and they treat my family as if we were part of their families! Rodeo families are hands down the best in the whole world!!! I seriously look forward to seeing these people every month! But at the end of the day, when everyone goes there separate ways, I sit alone, in the trailer, pondering what life would be like, if Jacy had never gotten sick. All of the fun she is missing out on and how guilty I feel when I forget for a moment and start to have fun myself.
Then I’m mad it’s not me. Jacy is something special. I am not. She has done almost everything right her entire life. I have not, in fact I spent most of my early life doing just the opposite. She is kind to everyone, I can be a bit of an asshole. So why? Why has God burdened her with this punishment and left me alone? Why is God putting this upon our family, our children, our friends and relatives? Is it truly because God thinks we can handle it? What kind of bullshit is that? Does that mean people who hold no struggles are weak in Gods eyes so they get a free pass?? That makes no damn sense!

I always say we need to have faith. Believe in our faith. I believe in God. I believe there is a reason all this is happening. I believe we are being tested. I believe there is a plan and I hope God reveals it soon for as of now I can no longer see the Forrest for the trees.

The fact is pride is what leads us to believe we can conquer all without help or faith. It is how this simple statement I have repeated and lamented over continues to come forth.

“God will not give us anything we cannot handle.”

In reality it reads: No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you can stand up under it.” (1 Corinthians 10:13)

The way I read this is as such: God WILL give us all more than we can handle. He will challenge us, challenge our ability to retain faith and he will forgive us our temptations.

I believe my faith is strained right now. I believe we (my wife especially) have been given way more than we can handle. I believe the temptation to just quit is great.

So…..

God, could you give us just a little help? Please….

I’m not sure how much more of what you are giving us we can all take.

(Fuck I’m crying again)

I met a woman today….

theycallmebetty3 Comments

I stood nervously rocking back and forth. I don’t know why I still get nervous after all these years but I do. Just another presentation, a dog and pony show as it were but for some strange reason my brain reverts to when probationary was the status written below my helmets crest. Fear of failure, saying the wrong thing, not adequately relaying information to a public mass who in reality is really happy to have us around. Sure there is the occasional grump or bitter individual who for some reason carries a chip on their shoulder whenever we are around (and this night was no different) but the majority simply want to say hello, or thank you, or in some cases words can’t form and they sheepishly smile while politely waving as they pass.

It was a local schools annual harvest festival within our town. Our fire engine had been assigned to appear as part of an ongoing public education effort. We pulled up, met with organizers and took our place upon the basketball courts right next to our local Police department’s display. Doors opened, cabinets exposed, wrinkles shifted from our shirts, plenty of stickers loaded into the upper right pocket and in mere seconds they came and came and kept coming to our delight..

Over the course of two and half hours we helped children into our engine, showed them all our fire gear while explaining what we do along with a little bit of how we do it. Kids make me smile, they are honest, truthful, hilarious and have no filter. They are perfect human beings, their thought processes still untouched by the cruelty of adult life along with hurtful biases or opinions. There are days I wish I could still witness the world through their wide absorbing eyes. Days I wish I could go back and do a lot of things over again, channeling my inner child to greater achievements as an adult. But I can’t, none of us can and so the fun in my job is being surrounded by these fantastic awestruck little people.

Tonight though something else happened. This “something” has been happening more and more and I am not sure what to make of it. It always catches me off guard and I never know quite how to behave or present myself. Much like an acting student who for some unknown reason develops a serious case of behavior altering stage fright, I freeze under the pressure and become extremely uncomfortable.

In the middle of giving demonstrations a line had developed filled with children (and a few adults) waiting to climb into our Fire Engine. As we happily interacted with the masses by placing one child at a time inside the engine for picture opportunities a woman walked up and gently grasped my arm. She looked me in the eye and asked; Are you Betty? To which I replied; I am?

She then explained she had been battling breast cancer and with it how much she thoroughly enjoyed Betty’s writings.

As has been the usual mode of reaction, my cheeks felt flush, my heart rate doubled and I mumbled something. I don’t remember what I said because after I learn someone actually reads and enjoys my writings in person I suddenly feel like a 12 year old boy who has just professed his admiration to the prettiest girl in class and she’s responded by saying she likes me. Awkward and elated all at the same time!

This sweet lady with the kindest smile told me her husband was amazing, and how much she appreciated him along with all he has done for her during this very trying time in their lives. She asked if she could hug me, I said yes and as she did I felt thankful, warm, full of love and humbled.

As I have stated on numerous occasions, this blog took a life of its own when my wife became ill. It morphed into what I hoped would be nothing more than a journal to reflect upon after we hopefully conquered Leukemia. Then as time progressed it changed into an open forum for all to read hoping other spouses in my shoes would know they are not alone. A gnawing deep inside told me to share through my experiences with other spouses or caregivers. A reminder to others they have the power within them to carry on, pick up pieces and provide a solid foundation for not only their family and loved ones but for the countless other lives they touch along the way. Cancer, Leukemia, and Bone Marrow Transplants are no longer something someone else has, a blank face or nameless person looking sad upon a Facebook post or commercial asking for donations either monetary or life altering. But real people you know or someone you know knows! We can no longer turn our backs believing it is someone else’s problem to deal with because trust me the statistics showing those affected are all too real! This power lies within you to open others eyes, to reach out and comfort those who need your help because you my friend have walked this path and survived! These diseases do not curse just those who are carrying them and trust me their fight is hard enough for them to live with and handle on their own. But the entire process both physically and emotionally beats down hard upon all of us who live, love and care for those stricken. It is at times overwhelming at how much our lives change and the inner pain it can bring.

So to hear another human being while holding your arm explain with the warmest of smiles and softest of hearts exactly how your writings have meant something to them. Well that brings up emotions that are hard to contain.

I am not sure why I fumble my words, or feel uncomfortable. Maybe because I am shocked that anyone takes the time to read my blog at all. Helping people is all I have ever wanted to do, I always wonder just how many people actually take the time to read this spattering of words and I always wonder who? Who has it helped, who really needs to hear from someone right now because they feel as though they no longer can? Who? Who is at the end of their rope or feels like God doesn’t have a plan for them and this is all just a miserable dark place in their lives that will never end! Who? Am I reaching enough people? How do I reach more? If I do reach more am I writing the right material or am I even the right person they should be reading about? I really don’t think you can write the wrong material as long as it’s truthful and from the heart. But, what if I am wrong and someone out there is missing the point or thinking if that guy’s in pain, you know the one writing about always having faith and carrying on is in pain then why should anyone have faith things will be any better? I don’t have an answer to that!

Yet it remains so important to me; sharing that is. It has become so paramount there have been nights I lose sleep out of guilt for not having written in a week. Our loved ones and/or caregivers are so important, they bear so much emotional burden and over time people who were helping, slowly fade away. Its ok, they have lives, we as caregivers were and still are extremely blessed for the time any and all assistance was provided! It is how it’s supposed to be and no one expects anyone to still be constantly rescheduling their lives, away from their families and friends for 2, 3 or even 4 years later. Suddenly though one can understand how it is to become isolated and alone. 24/7 your whole world revolves around a single human being. Try as hard as you might at some point even your kids begin to suffer! Your intentions are great, you do the best you can and strive to keep their lives busy and full but trust me they feel it! They feel the isolation and to some extent a bit of emotional disconnect. Nothing changes though, we are still there, handling every aspect of our stricken loved ones lives? It is a job we take a lot of pride in, for if you love someone there is no greater gift than to care for them when they are down. It is what love is, it is what God would want.

So to the woman I met today.

Thank you, for filling my heart with joy, giving my writings meaning, and allowing me the honor of meeting you. I apologize if my response was awkward, it was not my intention.

You reminded me that one of the greatest gifts we as human beings have is the power to share ourselves openly with others. You gleefully shared your story with me by my having shared my story with you over time on these pages. Our lives crossed paths and I will never forget that.

My heart is full.