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Atypical Cystic Fibrosis - Death, Why It Is So Hard To Accept

Let Me Just Be Frank ... I Am Dying...

For nearly 6 years, I have struggled with this topic. It isn’t easy to talk about to people...even love ones...about being terminal. When we are young, we have so much power, potential and life; that death seems more like a concept then a reality. We never give a passing moment about how finite life is. Delicate and fragile like a flower. It blooms into a strong blossom before slowly withering away into seed for rebirth. Death is life...everything lives and dies. Even you die every days without knowing! Cells die and flake away into new cells. We never worry about it because it is unavoidable and will happen if we want it to do so or not.

Growing up, I was told many times that I could die. Age 17 was my first prediction that if I got sick, I would die from the inability to breath and when I did get sick, I was devastated! But nothing happened! I defied the odds and made it to my 18th birthday! The 20s were no better, again told that if my PTF’s kept slipping, I would not see my 25th birthday. My 26th birthday came along and nothing happened and I felt untouchable. Like I would live forever! Ego replaces fear as I dove into a career that wasn’t geared for me and paved my way to greatness until I was 27 years old and my world was turned upside down!

Being really sick and nearly dying is a startling wake up call!

Usually we feel that we can overcome any obstacle, and obstruction that stands between us and living our lives. We are define by our success, health and mind and see the elderly as people who lack these traits and are sent away and forgotten. However, knowing someone with a terminal disease and to watch them slowly die is so confusing...so wrong!

At the peak of life, at the moment they are about to change the world and like a flame, they are snuffed out. Nothing but a ghostly smoke hovers over the flame of life and the candle of time.

THE WANDERS NIGHTSONG REFLECTION

When my own health took a nose dive at age 27, I wanted answers! I felt like I was grasping at straws and getting nowhere. Call out, but no one answers! You will walk this path alone to its end! At the twilight of knowledge that you are dying, life is like the ‘Wanders Nightsong:’

‘Above all summits it is calm. In all the tree-tops you feel scarcely a breath; the birds in the forest are silent. Just wait, soon you will rest as well.’

A rhythm of expected long sleep, death and eternal peace as the wander goes through their last night on earth. Death isn’t something to fear...it is living a productive life in the light of the sun and coming home to rest at night. However, as any cystic fibrosis patient will tell, life isn’t exactly like the end stanza of the Wanders Nightsong by Goethe. You must first journey through the first stanza:

‘Thou that from the heavens art, every pain and sorrow stillest, and the doubly wretched heart, doubly with refreshment fillest! I am weary with contending! Why this pain and desire? Peace descending; come ah, come into my breast!’

Life is meant to be filled with pain: the pain of love, the pain of laughter, the pain of sadness...the pain of growth...and the pain of death. Pain is what gives life its meaning...its substance...however, sometimes pain can be overbearing and the Nightsong speeds up as we walk our path into the shadow with hardly a breath that we were ever here.

We all sing our individualized songs to our own tune. Songs we hear sculpt our lives and our being and form us into the personalities we really are. Even though we cope with all this pain and fail to give in...is it desire to stay alive or the fear of eternal sleep? Anyone with a terminal illness would convey that life isn’t much to desire...but it is special, it is unique...it is spiritual! It is the greatest gift we will ever receive! However, over time, our songs change as the pain worsens and pushes us closer to our eternal rest and our songs grow dimmer and darker with fear, doubt, resentment and anger...

HURT REFLECTION

When my disease was in its early stages of diagnosis and there was so much turmoil, uncertainty, despair and pain...a heavy black blanket descended down upon me and my soul’s light dimmed as I feared the eternal sleep. I was angry with the world, angry with the Lord, angry with myself. I felt ruined, I felt broken, I felt hurt! No song better described my mantra then the 9-Inch Nails song, Hurt which I loved composed by the man in black, Johnny Cash.

‘I hurt myself today to see if I still feel. I focus on the pain, the only thing that's real. The needle tears a hole, the old familiar sting! Try to kill it all away, but I remember everything! What have I become my sweetest friend? Everyone I know, goes away in the end. And you could have it all, my empire of dirt. I will let you down I will make you hurt. I wear this crown of thorns upon my liars chair.Full of broken thoughts I cannot repair. Beneath the stains of time the feelings disappear. You are someone else I am still right here. What have I become my sweetest friend. Everyone I know goes away in the end. And you could have it all, my empire of dirt. I will let you down I will make you hurt. If I could start again, a million miles away, I will keep myself, I would find a way.’

February 2015 was the focal point where my life changed. Everything I knew would never be the same. From untouchable to breakable, from live-forever to live-for-few-years. When I felt great, the math convinced me otherwise, and when I was sick...I knew it was finally happening! I have reached the twilight of my Nightsong...the sun was going down and I was sleepy.

The desire to stay alive was strong as I sat down, wondering how do I prove I have cystic fibrosis to a world that refuses to see me as otherwise. My pulmonologist would not budge, telling me: ‘You are too old to have CF!’ or ‘You weight to much to have CF!’ It was always something! He feared running the test, as if it would tarnish some golden trophy!

Needle after needle, they all started to feel the same. The pain, the sudden sting and then relief. The memories of the past haunt me as I wish the doubt would go away. First views and I look totally fine until they start using their other senses and realize that I should not even be alive! Something keeps me going as the world freezes outside of my room. ‘What do you have?’ the ER doctor asks me as the only diagnosis I have is asthma...but even then, that is not true as I failed my tests. I swallow my pride and know once those words escape my lips, it will be all over.

‘Cystic fibrosis...’ I cough as thick sticky mucus clogs my lungs with sickening crackles and pops. ‘I have cystic fibrosis and asthma.’ I say as the doctor is shocked and wondering why no one told him. They add new treatments and like a miracle, I begin to respond as I am in turmoil. All my life, I was just an asthmatic without asthma...now I had become something entirely different.

With my revelation, people began to see correlation’s in my health that pointed to cystic fibrosis and piece by piece, we picked them up and put in back together. I began to think, ‘What if I am wrong? What if this is all wrong?’ and like an answer from the heavens, I was fully tested for asthma and fail each test quite remarkably! I did not have asthma...I was misdiagnosed! The prospect of having CF was the only logical diagnosis...it explained all the un-explainable illnesses and like that I went from being asthmatic to a CF-Asthma patient.

Sadly, as my disease progressed, so did everyone else’s as my Grandfather died from Mesothelioma and my Uncle died from Lung Cancer. I lost another Uncle two years later and the third died about two years afterwards. My family was dropping like flies. Even on my grandmother’s side of the family, death took her sister and I was still hurt by the death of Amanda, whom I wished I could have thanks. But worse of all as the death of my beliefs, death of dreams...everything I was, everything I could have been died in 2015. It seemed that everyone just gone away!

As the years went by and my CF diagnosis was nearly cemented, my health began to finally improve! However, I felt like it was all a lie. No doctor officially diagnosed CF...only suggested it! However, in my eyes, the therapy was working, the medicine stopped my infections and I was healing...a worthy cost to live another 5 years! The problem with a successful diagnosis that proves its own self...all those broken thoughts about just being an asthmatic can never be repaired now...I have become something entirely different and began to adjust my life to doing CPT all the time, wearing oxygen, taking my nebs and pills.

As time went by, my old feelings about returning to my failed life as an asthmatic was long in the past as I felt that I’ve wasted time and precious hours listening to doctors and pulmonologists that acted so foolish with my health. I therefore became my own advocate for my health as the old life was long gone, but I still remained. As I look on my endeavors, I know I got lucky. An educated hunch and advocating from Amanda saved my life and even now, if I had the chance to change it all, I would...and say thank you to the young lady whom I never got to thank.

DO NOT STAND AT MY GRAVE AND WEEP

Do not stand at my grave and weep I am not there. I do not sleep. I am a thousand winds that blow. I am the diamond glints on snow. I am the sunlight on ripened grain. I am the gentle autumn rain. When you awaken in the morning's hush I am the swift uplifting rush Of quiet birds in circled flight. I am the soft stars that shine at night. Do not stand at my grave and cry; I am not there. I did not die.

~Mary Elizabeth Frye

#justbreathe #loveistheway #lovepeaceandharmony #cysticfibrosisawareness

#theatypicalcfer