I just got off the phone today with a customer service rep who informed me that driving my wheelchair accessible van one hour to access service for the lift was perfectly reasonable in her opinion. To date we have been able to access service for our van locally, but that has changed since our local shop was purchased by a competitor and the maker of our lift will not work collaboratively with a competitor – even if that is in the best interests of their consumer group. I could barely control my rage. How dare a customer service rep presume to be able to even guess what might be reasonable within the context of my life. For an agency whose product is geared toward people who live with disabilities they might want to do some sensitivity training.
The idea that moving forward I will need to clear my day, arrange for a full day of nursing, and then spend almost two and half hours on the road to get my van serviced was enough to reduce me to tears. I so don’t need this added complication. It is One More Thing.
Today’s phone call was reminiscent of the recent phone call I had with the City of Waterloo who informed me that I would have to drive my young-adult son’s diapers to the dump weekly since they have suspended weekly pick-up. Again, One More Thing.
You see for everyday people these Things are usually a no big deal. Bi-weekly garbage pick-up. No worries, we don’t generate that much garbage. Car problems. Got it. I can run the car 5 kms down the road to my local Canadian Tire where it will get sorted out. Unfortunately in the life of an extreme caregiver none of these mundane issues are straight-forward. There is a layer of complexity that many cannot simply appreciate.
This layer of complexity is added to an already overwhelming life. For those of us who are extreme caregivers these One More Things add up. You see our lives are already beyond crazy. We don’t sleep. We don’t sit down to eat. Our lives are completely out of control and rotate around the needs of our loved one. We try to organize our needs into the nooks of crannies of life between medical appointments, illnesses, hospitalizations, and the ongoing hard work of caring for a complicated kid. To throw in unnecessary, added complications like car appointments an hour down the road is enough to topple us over the edge, and it can be very frustrating to interact with a world that just doesn’t Get It. It is infuriating when we communicate our needs and we are told we are being unreasonable, particularly since our lives are already pretty unreasonable.
The last month has been difficult. Matthew has been sick. My caregivers and nurses have been sick so I haven’t had a lot of help. Our elevator needed repair. Our van lift decided to stop working last night meaning that I spent most of today running my van back and forth to the shop. In the last month Matthew has missed almost two weeks of his day program. When he doesn’t attend day program I provide his daytime care, meaning any plans I might have had for my day go out the window. When his caregivers get sick I step in and fill the void. I am tired. I am frustrated that the things I had hoped to accomplish remain on my to-do list.
And I am royally pissed off at a customer service rep who had the gall to suggest she might know what was reasonable within the context of my life. You see Ms. National Customer Service Rep what you see as entirely reasonable is One More Thing in a life that already has way too many Things. Since you work in the world of disability service it is truly disappointing that you don’t get that. But more important than that, you might want to spend a few days in my shoes before you decide what might be reasonable and what might actually be unreasonable.