Category: Bone Marrow

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…