With all the talk of AI, I feel like a very lonely robot with no emotions.

Needing help basically with everything in life, small things can have a massive impact.

Windows really cause me frustration. When I want to open or close them after staff leave and won’t be back for hours.  Wind changes or a storm comes up, not a damn thing that can be done.

When it comes to eating, NOTHING worse than when I’m trying to eat a meal and the fork is flimsy.  Also, the food must be firm on the utensil.  Huge turnoff for me, when the food is not held properly.

It’s truly imperative that I get everything done within my time limit.  There are plenty of times when this does not happen.  My day can very quickly go into a tailspin. Say I forget to ask for a drink on the table, there’s nothing for me to do but go thirsty.  Add to that, no matter how hard I try, all life cannot be planned out.  Things are going to come up that are out of my control.

Someone phones me and I am by myself this is really difficult.  Odds are good that I cannot reach my drink during the conversation.  When this takes place, I get uptight and it is almost impossible to understand me.  So, the phone call is over before in starts. 

Company coming over is nice but at the same time it is nerve racking.  If they leave and I have no staff here, things can get interesting. Having to use the washroom and having nobody here to help me, is pretty self-explanatory.  Nothing I can do but try to not have an accident and try and hang on until help arrives.

Going uptown alone for a drive should be relaxing.  However, it can also cause havoc in my life.  A dry cough can cause me so much grief.  A drink or candy may be beside me, but they feel like two miles away.

If I have to sneeze and wipe my nose.  Nothing to do but hope people don’t think that I’m having a seizure.  My hat blows off in the wind, only thing I do is hope that someone stops to pick it up.

Not being able to move in bed really sucks too.  Being in the same position all night is tough on the body. Thirsty or hungry at night, not a darn thing that I can do about it.

 Having a physical disability, the way I look and feel is very important.  If I just, out of the blue want to wash my face or brush my teeth, this has to be timed out.  I want to go to bed early, sure, only thing is I have to stay in bed for a longer amount of time.

I have talked to people who can fix my life and they just don’t get it or care about my situation. I will never give up, but fighting for and living the most basic of lives is beyond exhausting.

Please don’t see this as complaining. This is just the way it is.  Some people say to me ‘I don’t know how you stay so positive.’  Trust me, I have my days of anxiety, stress and anger.  It would be nice to relax with a cup of tea and go pee. Instead, I am locked up and not free but I’ll continue to fight for my freedom and my rights to the little things.  

Being physically disabled in a small town, finding helpers can be a real challenge.

Over the years, I have had some pretty interesting conversations and been in the middle of some very peculiar situations. When interviewing a potential employee, I need to say the following: “When you come for orientation, I will be naked waiting in bed” and “If I am choking on my pills, don’t worry I’ll be fine.”  Surprisingly, most people still show up.

When is a good time to pull a beer from your pocket?  Maybe at a BBQ or birthday party?  I had someone pull out a beer from their hoodie pocket, as they were leaving the job interview.  Also, the individual apologized to me saying “Sorry for being late, I took to many pills.”  They might have still had a shot working with me, if they would have at least offered me a sip of the beer.

I once had an employee come to work still a little drunk from the night before.  After some pretty odd positions in my lift, we make it to the shower.  After they help me wash up, I asked them to leave me in the shower so I can soak for a bit. All seemed well, until my Zen moment was completely destroyed with a stench, not from this world. The employee was having a number “two.” My toilet is right beside the shower. What a way to wake up.

Being desperate for staff, I cannot be choosy.  Case in point when, I had to hire an individual, who basically spoke no English expect for a few words.  It sure made things interesting, especially when I have a speech impairment.

An employee once asked me, “Do you like adult movies and recreational drugs?”  Back in the day, I sure did.  Well one day, the employee brought them both over for me.  We did the recreational drugs but did not watch the movies together- that would just be weird.

One day my phone rang.  It was my employee telling me, that they have had to many drinks in the afternoon and they were too drunk to come put me to bed. However, they did say that their partner was not that drunk and he could come assist me with going to bed.  I said no that’s okay.

While showering one day the employee helping me, decided to grab the shampoo, lather up their hair, while still helping me wash up. That’s right, this person washed me up, then started washing their OWN HAIR. I really did not know what to say, except for “Hey, that’s my shampoo.”

I once told an employee that I like my beef stew chucky.  Supper was ready, I go to the table and on my plate, were large whole carrots, massive halved potatoes, to go along with pieces of beef that were bigger than my mouth.  Next meal, I was much more specific.

In saying all of this, all of my past and present staff have helped me shape my soul and left me with lasting memories. I have had, a lot of people help me out over the years. Each one of them, has their own unique story.

Today, inclusion is supposed to be at the forefront of society.  I think it’s pretty obvious, that Willpower Media is on the right but sometimes wobbly path to inclusion.

There’s a part of my life that very few people get to see. Usually when someone sees or talks to me, I am advocating, working or saying a smart-ass comment. Something that never gets seen by the general public, is how aging plays a major role in the state of my wellbeing.

When dealing with a physical disability, the muscles and body work against each other to the point where it’s a constant battle. As I get older, the pain is with me 24/7, it doesn’t help that anything I do is 10x more difficult than it is for the average person.  From getting dressed to typing to even something as simple as taking a breath, life can be exhausting.

Naturally things take longer for my staff and I to accomplish. This forces me to rush tasks that in the so-called normal world would take time.  This puts pressure on me as well as the person helping me. Say I have help for a two-hour time slot and I need to use the washroom and have a shower.  This could take over an hour start to finish.  What if I have to have a meal at this time as well?  The time can go by very quickly, so usually I have to go without.

This is just average day to day tasks, add on top of that being a business owner, hockey coach, writer, advocate, and also sitting on many different committees, my days are full.   So how the heck do I fit in my future, the present and just basic of life’s tasks? With great concentration and effort. 

The scary thing is, in someways I feel like my life is just getting started and I am not being allowed to live it.

Physically yeah life is difficult and I am not getting any extra help; however, this is not the only thing that aging does to me. Mentally, when you have a disability life can mess with a person.  Looking around, see my family and friends, expand their life, hurts.

I wish I could just live life and go with the flow, instead of having to plan out every minute of my day.  It would be so nice to have a regular job and save up for retirement. To just be able to dream about the future. What most do not realize is, as I get older, I am losing control of life.  As age grabs me and squeezes me every day, it’s up to me what comes out.  Is it determination or procrastination?

I understand my life will never be the same as other individuals, but I should have the same chance to succeed. All I want to do is show society, that anything can be overcome. A person must keep pushing to achieve a goal. When I keep pushing for more help to live a better life, I often get this response, “if you need more help, why don’t you ask your friends and family?”  My parents are older now and simply cannot help me like they used to. My brothers have moved away and started their own families.  When it comes to friends, they are just that, friends.  I mean there’s a very fine line between caregiver and friend.  If I have company over or go out with buddies, I just want to have a good time and not have to ask them for “personal” help.

I could let life pass me by but instead, I raise awareness about all aspects of living with a complex disability.

People often ask me ‘how can I help?’ To this I say, “share my articles anyway you can.”  Together, we have the ability to make change.

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