With the recent announcement of Bruce Willis’s aphasia diagnosis, this previously unknown and quite invisible, disability has now come to the forefront of our collective awareness. A few years ago, I had never heard of aphasia. If I thought enough about it, I probably could have figured out what the word meant. But that all changed on Sunday, May 25, 2008. The evening before was a festive occasion as my family gathered at my brother, Kevin’s, house to celebrate the college graduation of his daughter. My son’s college graduation party was scheduled for the following Saturday. But that night, it was all about Lauren…until the cake was served. At that point, my other brother, Tom, surprised us all with another cake. This one was for the mother of the college grad, my sister-in-law, Marita. She had just earned her second Master’s Degree in Library Science (the first being in Special Education), but kept quiet about her achievement, so as not to steal any of the attention from Lauren. As we were preparing to leave that night, Marita told me we could expect to see them for our party the following weekend. We all said our goodbyes and headed home. In a matter of hours, everything was forever changed.
That Sunday afternoon, Marita and her mother had attended a shower for her niece and on the way home, Marita’s mother noticed that something was very wrong. Marita had suffered a stroke while driving the car. Her mother (in her eighties) acted immediately by reaching over to press the brake and hastily steer the car off the road. This happened on 95th Street in Oak Lawn, IL. Those of you familiar with that stretch of six-lane road know it is an extremely busy area. Fortunately, a man outside a nearby business recognized their distress and called 911. The ambulance arrived within minutes and whisked her off to Christ Hospital, a short distance away. After having been correctly diagnosed in the emergency room, clot-busting drugs were administered without delay, to which she responded well.
Family and friends were shocked as the news spread. Marita was not what you picture a candidate for a stroke to be. She was healthy, slim, never smoked, and had no personal or family history of high blood pressure or heart disease. And yet, it was later determined that her carotid artery had a severe blockage. When we went to visit her in the hospital, she had just been moved out of the ICU and I remember Lauren saying that her mom would be so happy to learn of her latest accomplishment. “She loved graduating.” From that moment on, our prayers were simply about survival and some hope for recovery. Every baby step was a cause for celebration. Relearning how to swallow was a monumental achievement.
Marita was tremendously fortunate to be accepted into the Rehabilitation Institute of Chicago for physical and speech therapy and was a member of their first Aphasic Intensive Therapy Program (also known as Boot Camp, for good reason), the only other program of its kind being in Michigan. It was a very exclusive program, the first class only consisting of six, which created tight bonds among both the patients and families. We, in Chicago, are very lucky to have RIC right in our own backyard. It is a state-of-the-art rehabilitation facility, with patients traveling the globe for an opportunity to be treated by the renowned and dedicated, caring staff.
Looking back over that day, it’s hard to find things for which to be thankful. However, many miracles occurred on that awful afternoon:
1. That Marita’s mother had the presence of mind to act immediately
2. That their emergency did not cause any car accidents or harm to others
3. That the ambulance response time was amazingly swift
4. That Christ Hospital was only blocks away
5. That the emergency room staff correctly diagnosed the stroke, as strokes in women are often misdiagnosed due to the difference in signs and symptoms between men and women
6. That the clot-busting drug was administered without delay, since there is only a short window of time for that drug to work effectively, and her good response to the drug
Marita’s stroke had injured the speech center of her brain, leaving her aphasic, meaning her ability to speak has been affected and her vocabulary is limited. Aphasia was a new word to us then. We came to learn that there are many different kinds of aphasia. Marita can understand language and participate in conversation, but struggles to verbalize the words that are in her head. Working to improve her verbal skills has become the “new normal” in her life. And hard work, it is. After exhausting their medical insurance benefits for her speech therapy, she regularly attends therapy at St. Xavier University, working with the Speech Therapy graduate students and attends classes as they are offered by RIC.
Sadly, she has not been able to use those graduate degrees for which she worked so hard, as she has been unable to return to her job. Marita, though, was always a very talented seamstress and my sister and I have encouraged her to tap into her creative side and maybe sell some of her handiwork. Having these projects to work on helps to bring back a sense of normalcy to her life and a feeling of accomplishment. It serves as a great form of physical therapy, as well, as some of her motor coordination has also been compromised. I am hoping to have a few of those items to offer for sale on the Marketplace page of this site as soon as possible. I will keep you posted and would greatly appreciate your support in her new venture.
An experience like Marita’s, and now hearing about IL Senator Mark Kirk, brings us face to face with our own mortality. How many times do we say, after hearing something like this, “But, I just saw him the other day,” as if that somehow should protect us from disaster. But, that’s all I can think of, still to this day. I replay that evening before, when Marita said, “We’ll see you next week for Mike’s party, but we’ll be a little late because I have to stop by a birthday party for a girl I work with.” A line uttered so casually. That following Saturday did not find Marita at her friend’s party, nor our family celebrating Mike’s graduation, but rather we were all grieving Marita’s tragedy. A priest at mass recently had a wonderful homily about how we must value every moment of our life, to live in Kairos – God’s time. To put it in perspective, he said, “If you don’t understand the value of a month, talk to the mother of a premature baby. If you don’t understand the value of an hour, speak to the parent of a teenager who was supposed to be home an hour ago with the car. If you don’t understand the value of a second, talk to the man who just avoided a head-on collision. If you don’t understand the value of a millisecond, talk to the silver medal winner.”
We are always caught up in the busy-ness and messiness of day-to-day life that we too easily forget to value every second, minute, day, and week given us until we hear tragic news. Let this be the first moment of the rest of our lives and let us make the very most of every moment we’re given. Because, as we’ve been told – yesterday is history, tomorrow a mystery, but today is a gift, which is why it’s called the present.
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Rehabilitation Institute of Chicago is now the Shirley Ryan AbilityLab. You can learn more on their website: https://www.sralab.org/