I have been ruminating on an issue that has affected me deeply in recent years. In fact, I have been working on this particular blog entry for more than two months! The advent of the Pandemic exacerbated the problem of no longer being able to speak. Even though the worst of the pandemic over, at least for now, I am haunted by the personal devastation that enforced isolation brought on us all. The isolation was akin to what happens to those of us with speech disabilities. We “Non-Verbals” are not magicians who can make ourselves disappear at will, but we certainly do “vanish” in the middle of a group when our voice can no longer be heard. Unfortunately, in this fast-paced world, non-verbals literally disappear, as conversation flows around them, often burying them in a ton of verbiage to which they cannot respond. Somehow, it no longer seems to matter that nonverbals are ordinary human beings..with coherent thoughts and feelings, personal histories, and stories to tell! Trust me! They desperately want to be part of the conversation!. Being speechless…a Non-verbal if you will…is a horrible, lonely, deadly fate that leaves the individual totally isolated, even though he/she may be there in plain sight. I know much about this, because until recently, that person was ME!

Before I go there, however, let me hasten to say that when I lived on the “normal’ side of existence, I was like most people:  uncomfortable when around someone who is disabled, particularly if that person could not speak clearly. I didn’t even realize that I was assuming that the afflicted person was not fully present. That the person’s  brain was  gradually failing to do its job in preserving personhood.  I’m ashamed to say, minister that I am, that it was all too easy to just pat the afflicted, non-verbal person on the back and then walk away (often too quickly).  

I am haunted by the memory of one particular incident when we were attending a reunion. A good friend and colleague from years gone by was tied into her wheel chair so she couldn’t fall out. To even see her face, I had to sit on a chair lower than hers, as her head, too heavy for weakened neck muscles to hold up, was bent permanently towards the floor. Her once-bright eyes were dull, the sparkle of life itself fading slowly away. I noticed nobody at the reunion had stayed beside her for more than a minute or so. I found myself sitting beside her, fumbling for things to say. The voice of this former singer had faded into a barely audible, flat-toned garble, and I struggled to understand what she had to say. I looked around the room at other reunion-comers, selfishly longing to get away to visit with others…to get away from what had become a very uncomfortable interaction….

Even though I knew, at that reunion, that I had been handed the exact same diagnosis as my wheelchair-bound friend, I was determined that I was never going to let  that happen to me!”  And so, I went blithely back to my life, still relatively untouched by the monstrous Parkinson’s diagnosis.  Still unable to acknowledge that I really am at the mercy of this Monster.

Fast forward to 2018.  I knew in the spring that my voice and diction were beginning to fade, my tongue tripping over some sounds as if English were a foreign language.   I went to several voice specialists, actually hoping that all their tests would show something wrong that they could fix.  To no avail…everything inside my face and neck looked absolutely normal!  I was sent to a voice specialist who also had advance degrees in music, very similar to my own training. The articulate speech that  I had relied on so heavily in my profession was slipping away. I was embarrassed, hating  the croaking sounds that issued from my throat. With no hope in sight, I gave up.

I was directing the choir that I had accompanied for years. In rehearsal, they could no longer hear me as I gave musical instruction.  What they could hear was a garbled mess.  They were all too kind to say anything, but the blank looks on their faces gave them away. I felt as if we were all descending into a chaotic world where no one was the leader anymore.  Frustrated and embarrassed, I stepped aside, thrusting the role of director onto my husband, who was already the accompanist for this fine choral group.

The isolation increased. In conversations, any attempts I made to enter into a discussion were not heard, and I was left in the verbal dust, my ideas wasting away in silence.  Virtually everyone quit calling me on the telephone.  Even my sister and best friend resorted more and more to texting.  Those who did make the effort to at least greet me, often turned my discomfiture on themselves with excuses about their aging hearing, dead hearing aid batteries,etc. But I knew the truth…I could no longer communicate audibly.

And so, I descended deeper into the chasm of isolation and loneliness…and invisibility…marginalized by the monster. Our society has done much to help handicapped people (I am very grateful for ramps in sidewalks, for motorized carts in stores, parking spaces near the door, etc.). But, I ruefully discovered, we as a society have done very little for the vocally handicapped!

Seven months ago, my neurologist, working with a Boston Scientific rep, tried a new way of programming my brain implant. Suddenly, without warning, I could speak almost normally!! The effects of the new programming were immediate, This was amazing, just as exciting for family and friends as for me. Some friends even called me on the phone, just to hear the miracle for themselves! I experienced anew the joy and comfort of long conversations with my spouse, of family phone calls, of telling anecdotes while at a dinner with friends…all things that I had taken for granted pre-PD Monister. Also, I experienced a strange form of survivor’s guilt….why was I given this has new chance to speak when so many other Parkinson’s patients are relegated to permanent silence?

Friends, forgive me if I stand on a proverbial soap box for a few minutes.  We have done so well in our accommodations for handicapped individuals…..let’s not overlook the very real problem of not being able to communicate verbally!   I tried various forms of voice enhancement, and discovered that at the very best, each device was more aggravation than help!  In fact the best accommodations  were offered by individuals who took the time to slow down and give extra time and attention to  an encounter with me.  These friends looked me directly in the eye to be certain they were communicating.  They did the intensely hard work of deciphering what I was trying to say. And failing these attempts, a hug (well, given the current pandemic, this could become a fist bump or pat on the shoulder!) was always welcome! Somehow, physical contact has become even more meaningful than ever!

Friends, forgive me when I speak forthrightly. Forgive me when I speak directly to injustices or say things that make folks uncomfortable. I need to make every word count these days, because the gift of communication, of speech, I can no longer take for granted!