Paralysis 'Freeze Tag' -- Not a Fun Game in Real Life

Posted by Michael Collins in Life After Paralysis on October 09, 2017 # Mobility

My adult daughter has recently informed me that freeze tag was a game that she and her classmates enjoyed playing when they were young. In the game, the person selected would be required to hold whatever position and posture they were in at the time they were "tagged."

She also pointed out the similarity between the game they played in their childhood and what happens in the life of someone who is quadriplegic. Admittedly, the paralysis caused by my cervical spinal cord injury makes me pretty immobile to begin with, as once I am in bed I will not be leaving it again without the assistance of someone else.

Despite my paralysis, my life can get pretty busy once I finally get out of bed each day. An electric lift provides the power to transfer me to wheelchairs, and a power wheelchair substitutes for my immobile legs as I move around the house or anywhere else. A wheelchair van that is set up for me to drive with hand controls allows me to travel to other locations for shopping, medical appointments, etc.

Those are the valuable threads that allow me to live independently. Unfortunately, those threads have a habit of breaking now and then. When that happens, like in the game of freeze tag, my independent life is put on hold.

September has been the month for failing electronics. It began with the hand controls on my van, which I have been restricted from driving for months at a time because of muscle tightness in my arms. Clenched fists are not useful for gripping the type of hand controls I use.

I finally got the hand controls modified, but unfortunately my driving needed to be postponed, as a new problem arose.

My power wheelchair has decided that it is tired of working at my command so will at times stop completely and be impossible to move via the use of the joystick with which I normally control it. The computerized electronics on this 400-pound behemoth rival those found in an airline cockpit. They are complex and can only be deciphered or repaired by technicians who need portable programmers and computers in order to do that work. Unlike the old days when we could change a sparkplug or add some oil to keep the family car running, this wheelchair cannot be repaired by the user.

Unfortunately the situation gets more complicated as each region only has one approved contractor to provide and repair wheelchairs for Medicare and Medicaid clients. When I tried to get someone to come to my home to evaluate my inoperable wheelchair in order to get parts ordered and repairs done I was told I would have to wait six weeks for that to occur. I was able to get an appointment to go to their shop 30 miles from here, but that was also 10 days later. in the meantime, it is operating but periodically will stop and I have had to be pushed a few times by neighbors, family or friends. Since my wheelchair and I weigh 600 pounds, that is not an easy task.

In reflecting on the different times during the last 29 years when I have been effectively "frozen" in place I came up with the following list:

  • Morning attendant failed to show up for work, stranding me in bed for at least four hours -- 14 times
  • Van died while driving, leaving me stranded in locations where I could not unload from the vehicle or roll to a place where I was safe -- four times
  • Airline personnel left me stranded, unattended, in an aisle chair for at least 30 minutes -- four times
  • Airlines "lost" my wheelchair so it was not available after landing at my final destination -- three times
  • Airlines did at least $200 damage to my wheelchairs -- five times
  • Wheelchair tires went flat while traveling away from home -- four times
  • Wheelchair power failures -- eight times
  • Both front wheels fell off my power wheelchair while shopping -- once
  • Despite such incidents, I would not trade my current independent living status with anyone who finds themselves effectively "frozen" in place while incarcerated in a nursing home or similar institution. That is why we must all fight to retain and improve the systems that allow us to live, in good health, in the community settings of our choice.

    © 2017 Michael Collins