I want to tell you about my husband, a stroke survivor who suffers with PBA. Life is complicated these days, still wonderful, but very different since his life changing stroke on December 12, 2001.
That morning, I slept later than usual. When I did get up, I realized something wasn't right. I found Burk on the floor downstairs, unable to talk or move. He had fallen and was kicking for help, unable to scream. I waited for the ambulance, after calling 911. It seemed like an eternity before they would arrive to help Burk, to help me. He wasn't answering us and a white foam was coming from his mouth.
Everything changed that day. The massive stroke left him unable to move his right side and unable to speak. I thought we could adjust, one way or another. It would not be easy, but with time and therapy I believed Burk could do as much or more than anyone. He was a tough guy. He fought to live in intensive care, when they moved him to a regular room, to rehab and back to intensive care. He fought when he was at the acute care, trying to become strong enough to go back to rehab. He struggled in Shepherd's ABI unit and while an outpatient at Shepherd Pathways and all the other rehab centers. I learned from the physical and occupational therapists, from the physiatrists, the case managers and the nurses and assistants.
Still, there was no way I could prepare or understand Burk's personality changes. He was a more cautious guy than before. Instead of the carefree one who made me laugh, everything was more measured, always challenging, sometimes fearful. I could see how difficult it was for him to be comfortable when he laughed at sad things and cried for no reason at all. At times, he laughed, cried and had angry outbursts with no warning. Something seemingly small would upset him and he would be obsessed for days. He didn't know what was happening. He didn't know this was part of his stroke.
Always emotional myself, I actually didn't mind that my husband was showing his feelings at times. It just didn't make any sense that he was laughing and crying and getting upset at the wrong things, the wrong times. I was afraid of him sometimes. At home, I tried not to provoke him so he would not get so angry with himself for being unable to control his emotions, the laughter and crying and outbursts that would come at the strangest times. Burk confessed he couldn't do anything about it, that it upset him to be out of control. Emotional lability was one more challenge to face at a time when he was unable to speak or stand and afraid to face the world. I remember him trying to learn to crawl. He looked up and asked how those babies did it. I was the one laughing then, but Burk was very, very serious. Nothing was easy.
We eventually learned about emotional lability, little by little. Beside the feeding tube and the meds and the wheel chair, the sliding board to get him in and out of the car and all the other gear we accumulated, we learned to deal with outward signs of emotions that were new to both of us.
I say us because the stroke impacted not only my husband, but our family and our friends. There was so much to learn, so much to do at a time we were exhausted and afraid. Friends wanted to help but we didn't understand enough to explain back then.
The emotional lability seemed like a cruel joke. There were new feelings that we wanted to hide as much as the crying and the laughter and outbursts. I didn't believe that we were lying when we told people we were fine. We were grateful every day, but the exhaustion couldn't be hidden. There were times Burk just couldn't do the things he needed to do to get better. There were times I just couldn't deal with the doctors and meds, the therapists and the equipment, the transportation struggles.
We had to face the truth. Burk could not control his emotions and I, who had always shown mine, was afraid to cry, afraid if I started to cry I wouldn't be able to stop. We were living in a new world and had to acquire new understanding, new skills.
After almost 11 years, Burk is doing most everything for himself. He is confident and eager to see friends or go out to a favorite restaurant. While he has more control of his emotions, there are still times when the tears and laughter come at inappropriate times. Understanding that emotional lability is a real problem and not uncommon helps him deal with it. We are thankful for those who understand and try to explain the situation to those who don't.
AN UNINVITED LEGACY
One of the uninvited legacies of many strokes is the inability to control emotion. This can result in embarrassing events.
My most regrettable event was listening to my best friend speak at a high-school reunion. I was so proud of him. Without attending our Naval Academy, Skip had become a four-star Admiral. I was filled with admiration and pride. But I could not control my crying.
This happened to me over and over. I could have won a lottery, be extremely happy, and I would cry uncontrollably. At the time, I was in a wheelchair. Most people ignored my sobbing. But I was totally embarrassed.
You see, I had been a good high-school football player. Crying was considered a sign of weakness. Even at home, I seldom saw my mother cry. I never saw my dad or his brother’s cry. It was a sign of weakness. I did not ask for this double legacy. It has brought multiple consequences. That was the legacy I inherited.
With stroke survivors, most people easily can see that one side no longer works. What they cannot see often can be more of a problem. I have had countless rounds of speech, physical and occupational therapy in over ten hospitals. Not once have I seen the offer of emotional help. It just is not SOP. But emotional adjustment to my new limitations was my highest hurdle.
In the 11 years since my big stroke, I have learned that crying is not a sign of weakness in stroke survivors, but a sign of extreme emotion-- either positive or negative. In my case, it has gotten better with time.
I learned that crying is not one bit unusual. It is normal. I have every reason to cry. I've learned that the inappropriate crying and laughter is going away as my body heals.
Was an All-City Football Player at CHS in Chattanooga, Tennessee; traveled several times to Europe -- including Paris, Rome, Zermatt, Kitzbuhl, Venice, & Munich; held several positions in advertising agencies including responsibility for all direct-response advertising and for all research; moderated many focus groups (even one about stroke for the state health department);
Exec V.P.; had fun working for Six Flags; am the father of one son (who travels the globe to speak about astrophysics); Have been married to Donna for 43 years.
Had a massive stroke about 11 years ago (was given up for dead by the hospital staff). Traveled from California to Boston to see family and friends (not easy on those old streets). Traveled for therapy to Augusta, GA for Bioness Training, to Charlotte, NC for Myomo training, to Chattanooga for weekly e-stem swallowing therapy. Currently continue with my PT, walk with a cane and take public transportation to the gym where I work.