Drowning or living life?

The last few weeks have been pretty incredible.  A little background of what has been going through my mind since January of 2012.  I was pretty much convinced that my mental and neurological health declined pretty drastically.  Increased seizures, consistent lethargy, and no matter how joyful the experience, I have felt an abyss of sadness in my heart.   But finally I got fed up.

Three weeks ago I called my neurologist just ready to let it all go.  Yes, I mean quit, cease to exist.  I am not talking about taking any drastic measures to end my life, but I was just tired of fighting, working and managing every single activity in my life in a way that insure I would be "ok"; seizure free.  That meant turning down invitations to join friends for dinner if I knew it was a crowded restaurant.  It also meant staying inside during the hot summer days to regulate my temperature from overheating.  I found myself isolating in my home, often times nervous to simply walk to the end of my drive to retrieve the mail for fear that a neighbor might engage me in conversation and I might lose my ability to speak in that moment from an episode.

Everyday I woke up, went through my list of things to support myself in having a good day.  Meditation, reading, journaling, making my bed, eating breakfast, working out at home, keeping myself as active as I could within the confines of my home.  Hesitant to work in the yard or even call a friend to talk because my life was beginning to close in on me.  Feeling like I had turned 90 since my 40th birthday I was ready to throw in the towel, fall asleep and peacefully find my way to the phase of life; total rest.  But something in me stirred; a combinations of social interactions with the recognition of fortunate I really I am to be living the life I am suddenly snapped me out of sadness to anger and frustration.

That anger and frustration with managing my health or what I am beginning to understand as "hiding" from life catapulted me to speak out.  I called my neurologist and for the first time in a very long time I find my voice.

"I am not happy, my quality of life has continued to decline in this past year and I feel like I am growing more and more crazy."

I guess feeling more comfortable cuddling in bed all day with my cats Gracie and Jake rather than stepping out my front door to experience the fullness of life began to weigh on me.  Is this the life I want to be living?

So after a normal EEG, an MRI scan of my brain that proved there was no new scarring or bleeding in my brain and a blood test that showed I was no longer on a good therapeutic level of anticonvulsants my medical team and I had some solid information to move forward.  Each step of the way I was frustrated by good news, thinking if my EEG is normal than what is wrong with me?  If my brain has not bled any more or if there are no new scars than when I am suffering so much?  But the blood level results returned me to sanity.  Knowing that the medications I take to manage these episodes were not at an effective level gave me peace.  Finally, an answer that made some sense.  I was not going crazy, I was not losing my mind, I was just in need of an adjustment in my medicine.

This year has been a beautiful year filled with new friends and fun experiences but all were underscored by my own perception of my impending debilitation.  2012, my 40th year of life was beginning to feel like the turning point from living a life filled with beauty, love, adoration for the creation of each day into a year of "lasts" and acceptance of the status quo.  And that status quo was the acceptance that over the next few years I would no longer be able to take care of myself. I would need a live-in health care provider or need to be in assisted living of some sort.  My thoughts were heavy and dark and the hardest thing about it all as I look back on it; it just seemed like the natural course of events to me.  I had accepted my life as being a steady decline to further dependence on others and a slow migration from living life to living out my death.

Today, it is nearly three weeks from my last seizure episode.  Today, I trust that I still have a life to live.  Today, I realize those thoughts of resignation were merely a dream; a collection of tiny fears piled up from many experiences both physical and emotional that began to drown my Spirit in worst case scenarios.

Today, I am alive.  I meditate.  I exercise. I nourish my body.  I make my bed.  I take my medications. I write and I will step outside for a breath of fresh air.   Perhaps through the course of today I will encounter a new miracle of life to remind of how good things can be perceived.

Today I am Kevin.

An average morning...

Gracie’s whiskers tickle my cheek; her purr so loud I can feel the vibrations through the mattress.  I open my eyes to meet hers staring back at me.  She is a full figured beautiful black cat.  Every morning she sits beside my shoulder and waits.  Purring, gazing, making biscuits, anticipating the moment I open my eyes.  I start massaging the scruff of her neck, rubbing beneath her chin, and then holding my fist steady so she can rub her cheek as hard as she wants sending her into a luxurious purring kitty trance.  I savor that moment we share together.  That simple moment cuddling, petting and being with one another.     

 YES! my big girl.   I’m getting up! 

I tell her and pat her on the butt.  She hops off the bed and leaves me be.   It is such a sweet moment.  Yawning and stretching, my body feels good today.  Rolling to my side, I feel my rock hard cock brush against the soft linen sheets.  Thank God for hormone replacement therapy, it has not only given me back my favorite toy but I no longer suffer from insomnia and night sweats.   Tucking a pillow between my legs, I retract to a fetal position sensing the cool soft fabric against the head of my shaft.  Tightly I curl up, holding and cuddling myself within the sheets.  Mmmm, It feels so good to be in my body.  I hesitate to move.  My mind wakes and fear sets in.   

What if during this night, the part of my brain that hemorrhaged 12 years ago, began to bleed again?   What if once I leave the comfort and sanctity of my bed I discover my right leg is paralyzed once more?   Then I get a grip and the optimist in me speaks. What if I get out of bed and stand tall on my own two feet.   What if I feel so good I decide to go mow my lawn.  I imagine the roar of the mower, the combined smells of grass clippings, gas fumes and sweat.  I love grunging up my yard shoes, sweating from manual labor and keeping the sun out of my eyes with a cowboy hat.  What if once I finish the yard I kick off those shoes and sit for a spell, swinging on the front porch, looking out at my beautiful gardens, trying to cool down.  That sounds nice, doesn’t it? 

But the heat is too much and I enter the house and walk fully clothed into the shower.  I am very hot, sweaty and covered in yard debris.  As the cool water passes over me I slowly peel off my shirt, shorts, and lastly my socks.  I stand there naked, cool water rushing over me waiting for some comfort from the heat.  Yet, I never cool down. 

I step out of the shower confused and dizzy.  I wonder what I have done.  Mindful that I just took a shower but uncertain of what to do next.  Instinctively I towel off but notice my hand has cramped up in a tight grip, my right cheek taut.  I stumble my way to the bed frustrated that I have done too much, been overheated and managed to trigger a seizure.      I reach for the glass of water on the bedside table and I drink.  Water makes me feel alive again; it cools me from the inside out, and washes down the extra pills I need to assure my safety through this episode.  Then I remember that scenario to be just a memory; a mere recollection from 2 weeks prior when I dashed outside to cut the lawn early in the morning.   All these tormenting images flash through my mind and yet I am still cuddling safely in bed with serious morning wood.   I really just need to pee.  

Just then Gracie jumps on my hip, claiming the side of body as a runway, she sashays up to my shoulder, purring, nuzzling, extending her neck so her wet nose tickles my ear.  There I am again.  In that moment. 

Alright, alright, Gracie.  I am getting up.   

She jumps to the floor; I toss off the covers and scurry to the bathroom to relieve the pressure of an overactive bladder.    Ah, that felt good.  I stand naked facing the bathroom mirror.    You made it through another night, Kevin.   You woke up to see another day.    I pop back my medications, brush my teeth put on some grungy socks, torn up shorts and a ratty t-shirt.  .   Understanding the possible outcome, having experienced what often times does happen.   I grab my cowboy hat, head for the front door, slip on my grungy shoes and start mowing my lawn.  This morning I feel good.  This afternoon, we’ll see.  

Sunday afternoon I received a phone call from my neurologist.  He had good news.  My MRI showed no change from my previous scan over 5 years ago.  I had a fantasy that he would call me confused and baffled by the fact that my current MRI revealed a total and complete healing of all the scars in my brain.  I also had a fear that he might require me to come visit him in person to get the results because there was something new that showed up, perhaps a diagnosis of MS, or even more bleeding.  But that was not the case.  His phone call landed right in the middle.  Same old, same old!  Sometimes the status quo is just enough to make me smile.  

All is good.  

Now on to the next phase of increased medications to manage the increased seizures.  Keep moving forward, Kevin.  Keep moving forward.  

What a week.  It seems like I have experienced more seizures in the last 6 months than I have in a very long time.  To be completely honest, this week, I am completely over it.  I know other people have worse issues and I am grateful for the life that I do have.  Things could definitely be worse.  But today, today I am sad.  Sad and tired of feeling lost and confused during the day.  Sad and tired of feeling like I am losing my mind slowly.  I would imagine tomorrow I will feel better. I usually do.  But today, I am just sleepy, groggy and not willing to put up a fight.  My trip to the grocery store was a little unnerving.  I forgot my list and without my list I was lost.  Lost in thought, lost in what I was doing there and lost in my own anxiety that I just might have a seizure in the middle of the store and wake up with an EMT standing over me.  But that did not happen.  I got a few things for today and came right home.

So I sit here, with my cat, Gracie.  She keeps purring and crawling on top of me and that makes me feel a little better.  For now, I am going to take Bella, (my friends dog) for a short walk on this beautiful day and just breathe.   I will do what I need to shift my attitude, but I am going to allow myself to be sad for now.  Life is full of peaks and valleys.

Shiny penny.

Some days I feel like a shiny new penny.  Whether I be part of the collection a little boy that delightfully adds me to his piggy bank for future dreams or I become a world traveler stowed away in pocketbooks, wallets, dashboard compartments or the tatter coin purse of a little old lady making her way to the local Kroger.  There is great expectation in the life of a shiny new penny.  So much unknown, so much to see to reflect, worlds to encounter and even joy to bring when I am left on an abandoned parking lot driveway.

Waiting, waiting, waiting for that lucky optimist to pick me and notice I am heads-up.  Yes, its true, most days I wake feeling like a shiny penny, filled with promise and expectation.

But then there are days like yesterday.   Days that my shiny new finish feels tarnished; even sticky from the soft drink spilled on me last week, or the chewed gum stuck to my tails just wont let go.   Days when my shiny finish feels insignificant among the lint, fuzz and crinkled up receipt crowding me in a dark drawer.   There are days that no matter how shiny my new finish might be, the absence of light leaves no reflection for my shiny finish to glow.  On these days, I remember that it cost more to make me than I am actually worth and I tarnish myself.

Wishing, wishing, wishing that somehow my shiny finish will somehow make it through to the next day when perhaps that drawer is opened and I am given the opportunity to shine in the sun.  Wishing and dreaming for the day that I can flip proudly in the air, landing in the palm of some hand that will honor and cherish my wisdom,  Heads or Tails.  Both have merit.  Both have wisdom. Both are always present with me.

But days like yesterday.  Days like yesterday when the expectation to be all I can be, shine as bright as I can, dispel wisdom to myself or to others are all lost to me.  Lost to me from the lint in my head and the sticky gum at my tail.

Today, I remember that some days I do get to shine in the sun, some days I do get to travel the world, some days I even get polished and cleaned by an enthusiastic child adding me to their collection.  

Sometimes shiny.
Sometimes tarnished.
Sometimes just wading through the lint, fuzz, sticky gum and crinkled up receipts.  
But deep down, I will always be a shiny new penny from head to tail.  

How big a God can you see?

Written Fall 2010

In the fall, the oak tree drops acorns on the ground. The acorn lay dormant for the winter but come spring it begins to grow. It gestates and readies itself to release from beneath the soil its first stem. That stem grows to support foliage and with ease and natural order that acorn grows to its full potential; an oak tree. This process occurs naturally and beautifully as all the elements of nature conspire to support growth. The rain falls, the soil nurtures and the sun warms the tree; each contributing to the creation of beauty and the strength.

You asked me to share how big a God can I see? This same force of nature that transformed the small acorn into a grand oak tree, is the same force of nature that yields the forces of thunderstorms, the same that creates the breathtaking views of the Grand Canyon and the exact same force that brings a smile to a child’s face. How big a God can I see? I see a God so big that it is present in the purr of my cats while it attends to the thoughts and dreams of a soldier abroad. I see a God so big that it constantly and consistently creates each and every molecule and cell in the universe. I see a God that creates musicals, writes plays and books and entertains. I see a God that inspires, supports and gives energy and life-force to be expressed artistically. I see a God that celebrates every cell of the universe, a God so present that all things manifest through it. I see a God with its power and law clearly pushing the buttons of creation to formulate words. I know that God is in every sunrise, every word spoken and every thought given. I witness the changing leaves out my window and behold the magnificence of God in the minutest things. I understand that each leaf with God’s presence within, combined with all other aspects of the tree, the landscape and the skies create a spectacular visual experience and harmonic vibration of grandeur. The same power that creates the changing leaves generates the wonder and force of Niagara Falls.

If this God I know is truly the power and presence behind all things then I too am a complete materialization of its ability. As I witness God’s creative power in my environment I am acutely aware that all things creative flowing through me. Feeling the influence of natural order on my thoughts I trust the evolving Spirit of life’s inspiration to flow through me. I embrace my union with this creative God and trust that the same focus and ease of nature’s creation is mine to behold as there is only One-Mind and One-Power flowing through all things.

Awakening from the fog...

Yesterday morning I woke up feeling lost and confused.  I managed to get through some "details" of the day that needed my attention.  Calling in for a refill, talking with my nurse to clarify a few things about my medications but mostly I called her because I was lonely and a little scared.  Yesterday, turned out to be a day of confusion and misfires in my brain.  A general haze came over me mid afternoon and I suddenly found myself in my home with no understanding or concept of what was real.  This confusion lingered most of the day even as I spoke with a few close friends on the phone.  "are you OK?" "Kevin, it sounds like your not all there, whats going on?"

Of course, Mom called me to talk and she always knows when something is wrong with me.   She told me she loved me and would check in with me later when I got through the groggy fog of my neurological systems misfires.

Today, I feel warn out.  Warn out from the extra medications I took to cease the revolving currents in my brain.  Warn out from the apparent misfires and disconnects that create the fog and confusion.  Warn out from my lack of activity and rest  my body needed to squelch the tremors on the right side of my body  To be able to wake up this morning feeling groggy from meds, but clearer in thought.   Each day I wake, knowing that all will be well.  But within those days, I experience days like yesterday, when all might be well in the Spirit of my life, but all is chaotic in the neurological system of my life.  Life is confusing and cloudy and language seems like a lost art form slipping from lips with each conversation I attempt.

I know today that I will continue to do my best to allow the passage of these events to release from my system with grace and ease.  I do my best to stay positive and keep my chin up.  But sometimes, its just dam hard to do so.

My intention for the future is that my body's need for retreating from life for an entire afternoon, day or even a few days dissipates with grace and ease and I continue to experience life with an open heart, with optimism, with compassion for myself and my body and acceptance in the understanding that even though some days seem to be worse than others, there are still always days filled with joy, activity, friendships and wonder.  There are always days that I feel better that the day before.