Most of you recall the famous words from the Robert Frost poem, "And Miles to Go before I Sleep." In the world of my wheelchair however, it was only twenty minutes – and it wasn't even that at first. Let me explain.
In November, 2014, I received a new wheelchair because my old one had reached the end of its useful life. In addition, the US. manufacturing plant for that brand had closed, which meant if any part failed I would be out of luck. When your mobility becomes extremely limited following paralysis, you develop a special bond with your wheelchair. It becomes your new best friend, and your ticket to mobility. During those occasions when you are off roaming around on your own, your chair takes on heightened importance. If you are out amongst nature and there is no one else around, its durability can become a safety issue. For that reason, I looked forward to a chair which could be repaired if a component item failed. What they delivered however had a worse nap habit than a cat!
Compared to the old chair, the new chair was a technological marvel. It even had lights and warning flashers! That sounds kind of silly, but if you are out roaming the neighborhood at night, it can save you from nasty encounters with large, four wheeled motorized beasts. Instead of four speeds like the old chair, the new one had ten. The monochrome screen display was replaced by one in full-color , against a background of your choice in colors. The new chair had one bad habit however. After about seven minutes of not receiving any commands for me, it would go to sleep – and I could not wake it! I would have to find a kind soul who would manually turn my chair back on. That was a severe annoyance, but one which I thought could be easily rectified by a technician. I called our rehab technology company and asked them to send out a tech to make a number of adjustments, not an uncommon phenomenon when you receive a new customized wheelchair. When the tech came out, he made an adjustment to the sleep cycle in the control system, but he said the maximum time frame it allowed was only twenty minutes. That meant after this period of time, the chair would go to sleep and strand me if it received no input signals. For a month or so, twenty minutes felt a lot better than seven minutes, and I figured I would just have to get used to it. Until the following Sunday.
Due to a variety of circumstances, the chair was induced to sleep three times that Sunday. The third time however was the straw that broke the camels back. My wife and I were watching a show which had been previously recorded, when it ended. That's when I noticed my wife was asleep. At that point, I could either wait patiently until she had ended her nap, watching an image on the screen that was much like myself – frozen in place, or earn Ogre of the Day status by waking her up. I wisely chose the former. After about fifteen minutes however, my type A personality began imagining what it would feel like to slowly wring the neck of the engineer who had designed the sleep settings on this wheelchair. After correctly determining that might be a bit of overkill, I resolved to contact the manufacturer the next day. On the one hand, I couldn't imagine they had not heard this complaint before, but on the other, I anticipated being told that this had been done "for my benefit."
When Monday came, I was fired up as I dashed off an e-mail to the manufacturers technical support group about the need to correct the chairs inclination to nod off. I thought it was a particularly deft peace of communication, one that only slightly brushed on the need to address a potential "fatal flaw"in the wheelchairs design. I was expecting to receive a reply that let me know my input had been received, and would be taken "under the most serious of advisements." The eight word reply I got back almost immediately however was stunning. It simply said, "Have your dealer set the control to zero."
Still somewhat in shock from the simplicity of the solution, I copied and pasted the reply from the manufacturer in my e-mail to the dealer. They promptly scheduled an appointment to come out and reprogram my wheelchair the following Tuesday. Now, I truly have "Miles to go before I sleep!"
Slice of Life series articles are those that share the special experiences of those living in a wheelchair in a way that is witty, informational, poignant and even inspirational. Do you have a story? Share it with us at info@unitedspinalusa.org.