What Price for Independence?
By Diane Goodman, APRN, BC, MSN-C, CCRN, CNRN
It was a day nearly identical to any other, meaning my colleagues and I were rushing as quickly as we could to another meeting. They were making polite allowances for my slower pace, as they have since known I was diagnosed with an autoimmune disorder (similar to MS) three years ago. As we neared the hospital lobby, we were startled to see a thin young man struggling to ambulate with his walker. With legs trembling beneath him, he would drag himself mightily forward step by halting step, and drop down onto one knee intermittently as his energy waned. It became painfully obvious he would not reach the exit and, as we quickly came to the conclusion he needed help ASAP, he lowered himself to the floor, resting on both knees.
As we learned within the next few moments, the patient had been diagnosed with MS for approximately five years. He knew how tenuous he appeared when using the walker, but he was simply not ready for the next step. He wasn't ready to resign himself to being non-ambulatory, to utilize a scooter or automated wheelchair. He wanted to walk; no matter how far from "walking" his mode of transport appeared. His independence, at that moment, meant far more to him than personal safety or appearances.
Of the greater than 49.7 million disabled Americans currently residing in the U.S. (U.S. Census Bureau of Statistics 2000), each of them has faced a similar quandary when ambulation and independence could no longer be maintained without the use of assistive devices, family or added personnel. Personally, I have FIVE canes located in the garage, but so far, in spite of the encouragement of my neurologist, spouse and friends, I have not chosen to use one consistently. I have been able to "get by" with the use of shopping carts and/or hanging onto the occasional handrail to bolster my faltering coordination. My late mother, bless her heart, believed the use of assistive devices to be synonymous with "becoming" an invalid, so she passed away peacefully without ever touching the walker that had been lovingly provided for her. I have, I believe, inherited a fair amount of her stubbornness where assistive devices are concerned, so the number of canes I possess has diminished only by giving them away rather than wearing them out.
But what price do we pay for our independence? Why do we take so long (far too long, according to my peers) to go from a need for help to the point of blithely accepting it? Is it fear...or something far more complex? Whatever the modus operandi, we need to understand that simply discharging a patient with an assistive device does not mean they will be using it. It is far more likely it will be taking up space in the garage, until the patient has decided to take the next step.
When might that be? Weeks, months or even years after needs have been established. For myself, I am beginning to hear a cacophony of voices that sound alike, discussing the various features of walkers and canes. The words lack clarity, and so far, I hear them only as white noise. The echo is getting closer, however, and like the man in the lobby, it may soon be time to lower myself to both knees, rest and pray for guidance before letting another notch of independence slip away. Autonomy, it seems, may be an educational barrier that requires both clinical exploration and personal introspection before we get it right.