As many know, I use Personal Support Workers to come in every morning to get me out of bed, shave, shower, and dress me to go to work.

The last few years I have had a lot of trouble securing good ones consistently. I have had one but the other ones required to form a team of part time people to support me has been a nightmare. I have had to recruit, interview, hire, and painfully train over a dozen people on my routine. To articulate why training them is so painful, imagine that every few months you had to explain in great detail how you need to be washed and shower. Think about the detail of use this sponge, use this washcloth, put this amount of soap, wash in this direction, be careful to watch for x and y, remember to rinse everywhere to avoid rashes, stand me this way so you don’t drop me…and the list goes on and on. Did I mention that these people were complete strangers only days before? I am mentally exhausted before I even get into work. My job as a Global Vice President at a major bank is tiring enough.

Why does what should be routine be so damn hard?

It is so much taxing attention, energy, and anxiety of them not showing up for a shift that gets so damn frustrating. I need to be more patient, but it is mentally trying to have to reteach my routine that should just be automatic. I hear people that dream of climbing big mountains, wanting to achieve some professional level like CxO, cure disease, make a difference, etc. I just want to dream what it would be like to be capable of taking care of myself. To get up, shower, shave, dress etc. completely on my own. I dream of table steaks. I imagine that if I could do my care myself, my 48 years would make this routine automatic requiring minimal mental effort. My only struggle would be figuring out where my wife keeps the new shampoo when the other empties mid-shower. What would that be like? What would it be not to worry if the new personal care worker was going to show up? What would it feel like you are not being a burden to your wife and family members when they do not show up? A man can dream…

This frustration and struggle are likely what made me who I am. I am grateful to everyone that has pitched in to help all these years, allowing me to be me. We all have struggles, these are simply mine. Struggle makes us stronger.

Frustratingly, the journey continues…

Being a professional with a disability is like working two careers:

* The one I get compensation for - leading organizations to adapt continuous change.

* The other career - managing an organization of personal support workers to allow me to have a full life.

This post about the later, managing my care. Recently I came to the realization that not every professional in the world has to deal with this…and it is a very stressful activity. Before I go any further, I recognize that everyone has things to do in the morning to start their day…and I’m not saying mine is more, rather unique.

With my Cerebral Palsy (CP) I need help getting up in the morning to get out of bed, dress, help with my workout, shower, shave, and dress for work. I hire personal support workers to help me with this. Although my wife assists me in emergencies and vacations…I prefer to keep the role as wife and support worker separate. I am responsible to recruit, interview, hire, train and manage my support workers. I have a well refined process or each step in my morning routine which requires details that if they are overlooked is the difference between an ordinary day and a disastrous day.

There are a lot of great personal support workers out there. The challenge is that I can only offer 5.5 hours a day. I’m competing against other employers like nursing homes, group homes, etc. that can offer full-time hours, benefits, and a lot of flexibility for time off as they have a full staff of people to cover one another. I employ 2 personal support workers that coordinate time off with one another.

I have a huge need for reliability and dependability for the morning shifts. Being a professional, I cannot miss work unexpectedly or be late as it might be weeks or months before I can get back in Executive’s calendars or make decisions in important meetings.

My day starts at 5am. When I mentioned the details, the margin of error in aligning my shirt, pants, underwear is millimetres. It’s the difference between being comfortable all day & able to use the washroom and pressure sores, being uncomfortable all day, and washroom accidents. Once I leave for work, I’m locked in until I get home…I don’t have the luxury of adjusting clothes myself throughout the day.

I need the trust that someone will show up…on time. If they are late it causes instant anxiety as I am trapped in bed and my wife has to start rearranging her morning to backfill.

A few weeks ago, one of my helpers gave their notice. They had a full-time offer somewhere else. Although they gave two weeks notice, it was a week before I left for vacation. Immediately I had to post a job description on job boards. My best case is that I would have someone selected before vacation and onboard/train them when I returned from vacation. I received 40 resumes, screened them, and conducted phone interviews to decide who I would bring in for a face to face interview. I conducted 28 phone interviews describing the role and emphasizing the need for dependability. One person said, “5am is a little early for me, can I do 9am?”. Unfortunately, my Cerebral Palsy wakes up when I do…so I passed.

The week before vacation I managed to schedule 4 interviews with my wife and me. It’s important to have my wife involved in the selection process as these people will be in our home. None of them showed up. I left for vacation and extended the job posting.

When I returned I screened 45 resumes, 20 phone screens, and scheduled 4 face to face interviews. Only one showed for their interview. Luckily, this candidate had experience working with a professional with a disability.

This week they start and I had to put a schedule together for training. This week I have critical meetings and presentations first thing 3 out of the 5 mornings. Luckily I found 2 consecutive days that I can afford to be late. Training causes me the biggest anxiety in the process. I have to be ‘on’ and sensitive to articulate and explain every detail of showering, dressing , etc. The morning routine will be 50% longer. I will be incredibly vulnerable as I will be naked in front of someone that was a perfect stranger only days ago. I will likely be dropped, fall down, and be pinched.

Vulnerability of being exposed and defenseless

There is a light at the end of the tunnel. After a couple weeks this will be a common routine to the new worker and it will be our new normal. Until they move on to a job with more hours…than it starts all over again.

This is my normal. I’m not complaining as this allows me to go to engage with my passion and work with a lot of incredible individuals. All of the above has made me the leader and change agent that I am today. These skills and experiences has gave me the grit to build great products and organizations.

I am so thankful to all my co-workers and boss who immediately asked what they could do to help me through this difficult time. Their offering of support made me forget about what I was going through for a moment.

I am blessed for my amazing wife. Without her support and love…this would be unbearable.

Now I need to spend some time preparing this week for the job I get paid for. Until next time...

Why Does it have to be so damn hard?

A Story of a Professional with a Disability - Moonlighting on the side...