A ramp to Heaven?

In life, I have always tried to be a positive force. I would raise my concern and voice. Some people would cheer and applaud my thought choice. However, the people in charge, have left me no choice but to go hear the angels rejoice.

Every day, life starts with a pounding headache spasming back, a full bladder and thoughts of hopelessness. It is truly a living hell.

What do you do when you have a nightmare? Get up/roll over, grab a drink/snack, use the washroom?  Day after day, I lay there dehydrated, hot or cold just waiting for the grim reaper to come take me.

I have 12 hours of help per day.  The other 12 hours, I am alone. Alone with my physical and mental pain; alone with my thoughts; alone in the dark. Alone with my fear, alone with my sadness and my increasing depression.

My body is in the same position no matter what I do.  Sitting in my powerchair, showering, lying in bed, using the washroom… my physical state does not change. My back, knees, and everything else are so sore that pain is with me 24/7.  How do I cope? Drugs. All legal, of course, but still drugs. It is getting to the point where they do not work anymore. The pain that I go through, is now just a part of my being. All day long I am drugged up, just to function.

For me, having a complex disability, it’s truly imperative that I have an open mind and look at things in a different light. I am not considered a vulnerable person.  This is very bewildering.  I cannot protect or help myself in any fashion.

One day, I was working at my computer when a dry cough started.  My drink being at the table, I could not get there fast enough. I ended up throwing up, all over myself.   

When I explain this to the powers that be, their answer is this “move into a home.” I said alright, let us do that.  This is the answer, that is given back to me. ‘If you move into a home, you’ll get 3 hours of care per day.’ Excuse me?   Please explain to me the logic, of moving somewhere where I would receive less than half of the care, that I am provided with presently?  There answer is a blank stare back and nothing more. Come on people, do you remember that my intellect is simply fine?  I am only 38 years old with the sharpest of minds, a home is not where I need to be. Fighting and earning my way is fine.  However, the cards are getting severely stacked against my situation.

There are no organizations, that can provide me with more funding.   There would be other avenues of funding but only if I were to get a full-time job. To truly figure out the complete value on my being, I have to break down my funding into intellectual measurements. Which I find so ironic because, I’m punished for not having an intellectual impairment.

 My life is so very rigid, then the strictest of bosses.  Everything and in my life has to be scheduled down to the second.  Its so exhausting. Most of us out there have some sort of work schedule. If we are late, it has a domino effect. Someone must fill in for you, to keep everything going smoothly. Who the heck should have to look at the clock to see if its the proper time, to accomplish the most basic of tasks? Me. Anything, I need done, must be done at the exact same time all day every day.  The slightest variation and even more misery is bestowed upon me.

For 18 years, my mind and soul have been made to feel useless. Lying in one’s own faeces, can really start the fling of some dark emotions.  I believe that to make the world better, we always must “give.” All I need is some help to “live.” My emotions have turned numb or angry.  As my life passes me by, I think about all my accomplishments. Its wonderful.  However, the sad fact of the matter is that, so much of my bubbling potential is yet to be tapped into. The ones who have my life in their hands do not see me as a soul-bearing being, rather a case number, that takes up space and money.

 Several events have brought my PTSD, Anxiety and Depression to the forefront.

Ever since I was outside alone, got stuck in a snowbank and was forced to battle the -40 temperature in nothing but a T-shirt. I was awfully close to losing my fingers.  When I was found, my body was a frozen block, and I was in a state of shock. Along with the wind and snow, death was swirling around me.

There was also another time, when my front door blew open, in the middle of the night during a winter storm. Sleeping in bed, I woke up to the police in my bedroom. They were checking on me.  It is a good thing that they were not criminals. Is that not vulnerable?

Hearing and/or seeing my help leave at any time, especially at night, causes my anxiety to go up. It is then that I am alone and there is not a damn thing I can do but pray for morning to come quickly.

I mourn loss of my Service Guide Dog, Fanta. She taught me to open and be proud of myself.  Having Fanta beside me allowed me to explore my life’s limits.  She was always there as a safety net. 

Since she has passed on and not having her with me has caused me to spiral into some dark tunnels with no way out. I can feel the strangle of society gripping me even tighter. Everyday is a huge tease. I can see my mind and body, having a very bright future instead the thought of “why try?” fill my mind. 

With my physical and mental state, I could apply for MAID (Medical Assistance in Dying.)  That is where a doctor gives you an IV and you pass away peacefully. I would be approved.

Every door has been shut, along my journey for a positive and peaceful life.  Only one more to push open and drive through, death’s door.

Alex Lytwyn