Over the past few months I have begun to lose the full use of my hands and feet as a result of two related genetic disorders. I have progressed from using a cane, to using two canes, to using a wheelchair much of the time. Simple tasks like tying my shoes or holding a cup of coffee have become increasingly difficult and painful. I have learned about many things that had not been part of my world before such as compression gloves, orthotics, genetic markers, and precisely how much one does not want to have an “orphan disease,” i.e. a disease that occurs so rarely that pharmaceutical companies have no interest in developing a cure and health insurance contracts do not fully cover their limited treatment possibilities.
It has been a somewhat difficult time, one that has forced me to alter daily patterns and give up many things I once enjoyed. It has changed relationships with friends and family. It has, in short, quite changed how I view and interact with the world.
I have discovered that the vast majority of people where I work and live are remarkably helpful. I have been very lucky in that Kansas University has recently acquired a new director of its ADA Resource Center who has been unbelievably supportive and helpful to me and coordinated physical changes in the building where I work to make it more accessible. I have discovered that my students and colleagues, too, are remarkably helpful. The KU parking department and its director, Donna Hultine, for instance, have been terrific in finding safe places for me to park on campus, especially after I had an unexpected downward slide and a crash into a dumpster in one campus parking lot.
I have also found that in spite of all of this helpfulness, the world is not the most accessible place. In the end it comes down to cost. The law requires “reasonable accommodations” be made in many public places, but “reasonable” does not mean perfect or even nearly so. There are still any number of stores and restaurants in Lawrence where it is far simpler for me to use my two canes rather than attempt to use a wheelchair even though this is a far more difficult and painful option. But I have never expected that the world be perfect and I have learned that in spite of good people and protective laws, those who cannot walk easily or have full use of their hands, simply don’t have as much access to many places as others without such issues, do.
Lest readers think that this column is in the nature of a complaint or an expression of self-pity, it is not intended to be so. I take a rather stoic view of disease and its consequences these days. I tend to mutter “life is life” more and more each day. And I look at the benefits, yes, benefits, my diseases have brought me.
Until the last few months, my life was almost always blur of activity. I rushed from one thing to another, from class to meeting to event. That is common for university teachers. Now, of necessity, I do far less. I spend more time sitting and reading and writing and just thinking. And in those quiet moments I have begun to acquire a certain serenity I have not had before.
Perhaps, this is the blessing that comes with physical challenges. I’m still too new at this game to know for certain. But I have decided to treats my disease as a learning experience, as a way of seeing and navigating the world differently. And I hope that in doing so I will find not only new challenges but new grace as well.
— Mike Hoeflich, a distinguished professor in the Kansas University School of Law, writes a regular column for the Journal-World.