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...