Living with Aphasia: Loss of Control

One of the reasons that I started this blog was requests, from professionals working with persons with aphasia and their care givers, to describe what aphasia looked and felt like from the inside. I have been struggling with the following question for a couple of months. How do I express frustration without it sounding like despair or depression, and yet not minimizing those feelings of frustration?

Aphasia literally means loss of words. Practically, I have found it means loss of use or control. Ever since the earliest of times, even in the Garden of Eden, the first step to control or to use something was to name it. If I can’t remember the name of something, how can I ever expect to be able to use it or control it?

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Prior to two years ago, I believed that God had given me a greater sense of freedom. If I felt the urge that it was time to change jobs within academe, I could take the initiative and try to get a new job. Today, I do not have that option. Aphasia, fatigue and age now preclude me from working at those jobs that I loved and enjoyed within the academy. Honestly, I am sad and frustrated with that prospect.  But I am not depressed, which is the question the neurologists and therapists keep asking me. I am grateful for the opportunities that have been opened to me prior to this, as well as the work that I have been able to accomplish up to now.

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I also want to make something clear at this point. Although I may be frustrated, my frustration has not taken away my sense of gratitude for the life that I have lived, the work that I have accomplished, or whatever lies in front of me. A recent episode of “Criminal Minds” ended with what I found to be a thought-provoking conversation. One FBI agent was asked if the victim that they had just saved was okay. A second agent involved in the rescue responded that the victim was strong but scarred. The first agent then said, “You can’t come through something like this without getting scars. But scars only show us where we have been;, they do not dictate where we are going.” Another agent then closed the show with a Ralph Waldo Emerson quote by saying, “What lies behind us and what lies before us are tiny matters compared to what lies in us.”

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 At times, I feel scarred, but I know it’s not the end of the road. I don’t necessarily know where the road is going. But I am grateful for the opportunity to once again play the game that my wife and I used to play many years ago when we took Sunday afternoon car rides. Whenever we came to an unfamiliar intersection, we would look at each other, pick one of the roads and say to each other, “Wonder where this road goes?”

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About By Baylis β2

Ph.D. in mathematics; 40 years as an instructor and administrator in Christiian colleges & Universities; principle writer & initial director of critically acclaimed assessment project "Taking Values Seriously:Assessing the Mission of Church-Related Collges." Currently medically retired on disability due to traumatic brain episode which began with a blood vessel in a brain tumor exploding in March 2009, causing the tumor to implode creating many stroke-like symptoms; the remains of the benign tumor removed in March 2009 followed by many months of intenesive therapy that shifted gears when 4 tonic-clonic seizures in December 2009 left me unconscious in the hospitable for four days. I am now diagnosed with aphasia, epilepsy, Atrial Fibrillation, and the beginning stages of Parkinson's. Since I can't work a normal job in higher education, I spend my days reading, thinking and writing about higher education, epilespsy and aphasia. I have a blog, entitled By' Musings, in which I speak about topics of great interest to me: aphasia, epilesy, Parkinson's, higher education and religion. This blog canl be accessed through the URL of which is included in this profile.
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2 Responses to Living with Aphasia: Loss of Control

  1. ldelaforet says:

    In think about asphasia you might try my blog http://redoable.wordpress.com

    • I checked this blog and didn’t find anything aprpos to my form of apahasi. HOwever, I find it very amusin and there two items that I found very interesting because of coincidence in my life. THe first was the theme of the posting I read which was New Orleans food. This week I got a clall from one of my daughters asking me for culinary recommendations in New Orleans. Since sHe’s on a budget and it s a quick trip to Shrevesport for a LSU football bame. .SHe’ll have one day in New Orleans. So I stayed away from the cllassics: Brennans, Court of the Two Sisters, Giovanny, Emril’s,and Maximo’s, which would have been too expensive or required reservations or business attire. I recommended she hit the orignianl Cafe du Mond off of Jackson Square early in the morning for a cafe au Lait and a couple of beignets. For lunch I suggested she check out any of the street cafes south of Jackson Square. I told her to make sure she tries out the Gumbo, Jmabalaya or a shrimp poboy. Dinner is avaialable at any number of small cafes along Chartes or DeCatur Streets at a reasonable price, before heading back to Bourbon Street to enjoy the Jazz groups working the evening.
      The second interesting coincidence was the reference to REv WIlliam Spooner. It reminded me of the time I hired an adjunct faculty member by the name of Spooner. he would go out of his way to explain the namesake of spoonerisms was no relative of his but that soonerisms just came naturally to him

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