Being Remembered

I heard once that you start dying the second after you are born. My dad passed away over 13 years ago. I cannot go a single day without thinking of him. He was a great man. I regret that I have more appreciation for him now than when he was still with us. Maybe this is because I have grown into a replica of him.

I wish he could have seen first how all of the sacrifices that he and my mom endured paid off to make their son a man.  I wish he could have witnessed me falling in love to become the husband I'm proud to be.  I wish he could have seen the boy that everyone labeled a 'cripple' evolve into an adult that strives to excel in his profession.  I wish he could see me living a full and independent life.  I wish we could talk.  I wish he could see my eyes water up as I type this.  I wish I could hug him.

We had our struggles and our differences over the years.  It's only now that I know why he was so hard on me.  Society considered me an underdog but he believed in me.  My father could be considered underdog himself growing up.  With a grade 8 education and callus hands from long hours of  hard labour, he became a part owner of a company that employed over 100 employees.

My Dad

When a loved one dies it forces us to stop and take inventory of our lives.  To measure who we are and what we have become.  I don't have those answers for myself but I know who my dad was.  My dad was a strong leader that lead without having to say a word.  He was a man with a huge heart...that it ended up quitting on him from caring and loving so much through his life.  A man that loved stirring the pot and playing countless practical jokes.  A man that worked hard to give me the opportunities I have now.  A man that gave unconditionally in silence.

After my father died I heard stories of his giving nature.  I heard that my father would deliver groceries to his employee that was off work on disability and was struggling to feed his family.  Three weeks after his funeral I received a letter from a church that explained how my father worked on their their furnace many times through the years even though they could never afford to pay for the repairs.   There were many more stories that were told.  My dad never talked about any of these things...that was the type of man he was.

How will I be remembered?  I'm dying to find out.

Until next time...

The Dating Game

Everyone wants to love...and to be loved.  Everyone wants intimacy.  Everyone wants someone to grow old with.  Finding this person is the end game of many trials and errors.  This game is called dating.  It comes with optimism, discovery, anxiety, awkwardness, and self realization.  Dating is a challenge to everyone...especially for me.  This game  started for me in high school and continued to my early 30's. The most common question people have about someone with a disability is if they can have sex.  Let's put it this way, I didn't go through my vasectomy for a good time.  However, this question was always in the back of the mind of  everyone I dated.  Over time I wanted to have my opening line be, "Hi, I'm Dave...and I can do it".  I can disappoint a lady just as well as my walking peeps can.

I didn't start dating until later in high school.  I had to wait until girls got their driver's license.  I realize that dating a disabled guy might not be considered cool, but having my mom drive would have made it worse.  My mom's singing along to her 8-track of Glen Campbell singing 'Rhinestone Cowboy' would not have set the right mood for the date.

Caveman used clubs to begin their courtship.  Our generation used mixed tapes.  I know I'm going to get heckled about admitting this...but I'm sure I wasn't alone in doing this in high school.  When looks are not your selling point, nothing sealed the deal like spending hours making a mixed tape that included  'In your Eyes' and 'Somebody' for that special lady.  If you were smart, you used your dual tape deck to make multiple copies of this love potion in case that week's attempt didn't workout.

When preparing for a date I would think ahead to what I might say.  Obviously she isn't going to be interested with my boring self...so I have to portray what I would be like if I was interesting.   I guess telling her that I scored 4 touchdowns in the high school championship would be a stretch...

In addition to this I would have to manage how much I drank during the day.  No,  not 'liquid courage' but ANY fluid.  I would quit drinking anything at 2pm for a 6pm date.  I didn't want to take the chance that the restaurant washroom wasn't accessible, and asking her to help me might be considered a perverted request.  Gigity!  Alternatively, wetting my pants would not likely lead to a second date (unless I was lucky enough to connect with her freshly after a really bad relationship).

I did not use my wheelchair on dates too often.  Since I'm able to walk with assistance, I would have my date walk me.  Something I discovered while dating, and verified over my 5 years of marriage,  that women do not wear practical shoes out.  Walking me is usually easy...unless you are wearing 4 inch heels.   It was like being walked  along a tight rope.  Having my date walk me assured that at least we would hold hands during our date.  Who's got game?  Davey's got game. Plus, I got to make sure she didn't have 'man hands'.

In an attempt to be independent I would always order chicken fingers so I would not have to ask her to cut my meat up.  Chicken fingers is one of the last socially acceptable thing to pick up and eat with your fingers.  The fact that chicken fingers were on the menu tells you the type of places I would bring my dates too.  Shut up, I'm frugal.

We have all been exposed to being on a date where the other person will talk your ear off over the most uninteresting things imaginable.  When this happened to me, she would say, "You are such a great listener".  Not really...I just can't walk away.  Falling out of the booth and crawling away might have given her the hint.

Even though dating was excruciating, I would not change anything  After a long time playing this game, I finally won my soul mate.

Until next time...

Forever grateful

A lot of my coworkers have little children or are about to have a child.  This has had me thinking about my parents. My parents dedicated their lives to make sure that I have the life I have.

I was born in 1971.  At this time a lot of parents were advised to have their disabled child checked in an institution so they can get the 'care' they need.   Parents were told to not have high hopes as their was not much hope in the world for a disabled person. They  chose the path that no one dared to travel.  They were committed for me to have a life.  A life with highs and lows.  A life of love and heartbreaks.  A life of laughing and crying. A life of success and mistakes.  A life to the fullest.  A life I can call my own.

I'm grateful for your numerous battles with school boards who were not ready to accept me.

I'm grateful for you being a hard ass by making me work all hours of the night to one finger type my assignments.

I'm grateful that you didn't make excuses for me.

I'm grateful that you helped me build an armor shield that I would need to depend on when you weren't around.

I'm grateful for the many hours you spent with me in the hospital rooms telling me the pain would not be forever.

I'm grateful for all the sacrifices you made to buy the special equipment I needed.

I'm grateful for everything I have now.

You did an amazing job in raising someone who is a husband, who is a brother, who is an uncle, who is a son-inlaw, brother-in-law, uncle, and co-worker.  You did an awesome job raising Dave.

We had stairs in our house while growing.  Stairs that were a huge obstacle for me.  Despite asking my dad many times to build a ramp he never did.  For the longest time I thought it was because he couldn't be bothered.  A week before he died he told me that the reason why he never built the ramp was because he would not always be around to build ramps for me in this world...so I needed to be prepared to climb for myself.

For those of you that have children or are about to have a child, remember it's not the material things you give them, it's not about knowing all the right things to do, it's about giving them the opportunity to experience a full life.

I think I'm going to call my mom right now.

Left to right: Mom, Sister, Dad, Me

Left to right: Mom, Sister, Dad, Me

 

 

 

 

 

 

Until next time...

Disabled people can be bastards

To help provide insight to the dark side of disabled people I thought I would share a story of a practical joke that me and my disabled friend 'pulled' on a helper (PSW) that we both shared. This helper had been working with my friend for a lot of years. This helper only had been working for me for six weeks when we played this practical joke on him. As you will read, he is quite gullible. I wish I could take the credit for thinking of this, but it was my disabled buddy who thought of it.

I scheduled this helper to accompany me on an off-site management meeting for the company I was working for at the time.

While working with my buddy this helper says, "I'm going out of town with Dave for a few days."

My buddy replies, "Did Dave tell you what he needs for his 'bedtime' routine?"

The helper replied, "No".

My buddy proceeds to tell him that because my spasticity is so bad that the only way I can relax to fall a sleep is to be 'massaged in his private place' at night. After a bit of back & forth words between them, my buddy has him believing the story.

That day my buddy called me at work and told me what he had done. He encourages me to play along...I was just hoping I could do it with a straight face.

The next day this helper was working with me and brings up the conversation that he had with my buddy. I cut him off before he could finish and said, "Look, this isn't a rose garden for me either and rather not talk about it"...the truth is that I wouldn't have been able to keep a straight face if the conversation went on any longer.

The day before the trip this helper asked my buddy if he had any last minute advice. My buddy told him, "If I was you, I would bring condoms. If Dave is a 'quick trigger' you really don't want to clean that up"

My buddy calls to give me the update of their conversation. I decided to share this story with my wife, giving her another opportunity for her to shake her head in disbelief at me. To my surprise, she played along. When my wife filled my suitcase she packed condoms. I feel lucky to have found a woman that has a gimp fetish AND a twisted sense of humour!

When we got to the hotel the helper opened my suitcase to find the condoms...I still remember his look of fear as he noticed them.

Like every company offsite there is the usual team building exercise at a bar in the evening. My helper was taking every advantage of the free liquor to prepare him for what he thought he would be doing later. Near the end of the night I told him that I was tired and ready to check in for the night. My helper downed 3 drinks and proceeded to push my chair back to the hotel. I NEVER recall being pushed so slow in my life. It was like the final walk of a death row prisoner about to go in the electric chair. All we needed was the Imperial March theme from star wars playing in the background to set the tone better.

Before I continue on with the end of the story I think it's important to pay tribute to this helper's dedication to his job. This dude was about to 'churn my butter' out of commitment toward his job. The military would love to get this blind loyalty to duty!

We got back to the hotel, put my pajamas on, and asked for instructions for the rest of the routine. I said there is one thing before you start...can you sing "I'm a little tea pot"?

At that moment he realized we were 'pulling' his leg. He said, "You crips are warped bastards"...and to all a good night.

Until next time...

Ordinary Life…what an extraordinary effort

The last couple of months have been insane. For the first time in 5 years I became incredibly sick. I have no one to blame but myself for stretching myself thin in all areas of my life. However, for me to have an ordinary life it requires an extraordinary effort.

Balancing work/life is challenging for everyone. We all want to make an impact in our chosen profession and it’s easy to allow our passion to consume us as we strive to leave our footprint with our organization. When I got sick it made sense for ‘rest’ and me to stay home. How great would it be to do this spontaneously as the cold sets in. For me, staying home and resting involves more structure than it should. Having to be independent while home alone requires me to stay in my office chair so I can move around independently to the washroom and around the house while home alone. When you are sick wanting rest…an office chair is NOT the most comfortable thing to sit in…trust me, I’m a professional sitter. However, getting loaded on Buckly’s made it a little easier. I was getting a little grief from co-workers that I was working when I was supposed to be resting…considering I couldn’t lay down and daytime tv sucks, working in pajama bottoms & t shirts was the next best thing. Unfortunately for my wife, luckily for me, she came down with the cold and stayed home the next day allowing me to sit in my spot on the recliner couch. Having these challenges seemed ‘normal’ to me but was a moment of discovery when explaining it to my work peeps.

For those of you that don’t know, I have Personal Support Workers that come in the mornings (5:30am-8am) to help me get ready (bike, shower, dress, try and make me look good) and drive me to work. They also come at night (4:30pm-6:30pm) to pick me up from work, assist with my work out and do light housekeeping (my wife likes this perk of marrying a gimp). Having the right Personal Support Worker is essential for me to have an enriching life personally and professionally. A common question I’m always asked is why doesn’t my wife do my care. ..it’s because she is my wife and I don’t want the lines to be grayed between life partner and caregiver. Also, at times I might say something to stir the pot…and I wouldn’t want to be stuck in bed all day from my big mouth. However, on vacation, it’s just the two of us…2 is company – 3 is definitely a crowd.

Anyway, two weeks ago both my PSWs gave their notice. My anxiety level rises, as I need to find all new staff with the dependability & personality that will allow me to continue living my life. The resumes I initially received was terrible…no effort to lie to make themselves sound good. I usually like students as they have flexibility to do early mornings, afternoons, and travel with me for work. I have to put my life in these people’s hands…given that they help me with showering I hope these hands are also gentle. If they do not show up in the morning my day cannot begin. I have to recruit, interview, schedule, and manage my helpers to just get into work to start working. In the interview I have to get the sense if I can trust this person with my life…sounds easier than it is. Secondly, we need to interact well. Spending a few hours a day with someone you want to make sure you enjoy being around them. I took this for granted in the past and wished I could have asked those socially challenged helpers to snap my neck so I wouldn’t have to listen to them anymore. Thankfully, experience has made me wiser. The two new hires start training this week…fingers crossed.

After all this it is definitely time for a vacation for my wife and myself. This should be straightforward to arrange. We have booked a Hawaiian Cruise 18 months ago, life is short so it’s important to experience everything while you can. In making special arrangements to board the airplane for our trip the lady on the phone asked, “Do you have a Dr.’s note confirming your disability?” Could there have been a cure for Cerebral Palsy in the last few days that I just didn’t hear about? Doesn’t a power wheelchair and gimpy looking hands mean anything anymore? I have 39 years of Cerebral Palsy expertise so now I just have to get certified in Cerebral Palsy. My professional signature should now read: Dave Dame, PST, CSP, CSQA, CSM, IIA, CP (Cerebral Palsy).

People always ask me, “If you could start your life over without Cerebral Palsy, would you?”. This is a tough question…but my answer is no. I don’t think I would be the same person or have the same special people in my life that I do. The challenges I have endured has made me who I am today, personally and professionally. I have done things that others say was impossible. I have learned to fall and to always get up. What I need to learn is it’s ok to be vulnerable., it’s ok to not fix everything, it’s ok to be fallible. My life has always been to live without regret. I can live with a mistake…but I can’t live with wondering ‘what if’

Although living an ordinary life is an extraordinary effort, it’s also an extraordinary accomplishment. You don’t have to be a rockstar to everyone…just a rockstar to those loved ones, friends, and co-workers that help inspire you on a daily basis. To everyone that is in my life that reads this, thank you for making my life awesome.

Until next time...