by Marylee Nunley
In September 2001 on a sunny Sunday afternoon my husband John collapsed from a stroke. To this day, I do not know how I recognized it as a stroke, but I calmly said to him "I think you've had a stroke, I'm going to call 911". We were in the E.R. within 20 minutes. The first few weeks were kind of a blur. Confusion, agitation, speech problems, vision problems, right-sided weakness, no food until they could be sure he could swallow…………..what’s with that! This intelligent, warm-hearted man reminded me of a frightened little wild-eyed child and could hardly speak an intelligible word. I was thrilled on day three when he got angry with a nurse and said "this is bullshit", only to be told that it was an "involuntary response" and he hadn’t regained his speech. I still didn’t know he was going to have to learn to speak again, word by word and that he wouldn’t just wake up one day and be able to talk.
It wasn't until a few weeks passed that I began to recognize the seriousness of his injury. I kept thinking he’d just get better and be alright. Then, rehab which gave me such a sense of progress. After numerous evaluations of functioning, the team decides the patient’s needs. As his caregiver and head cheerleader, I am so excited that we are getting down to business and on a path to recovery so we can resume our normal life. Speech therapy is going to help him with his expressive and receptive aphasia. Let’s get going. The first speech therapy session will always be vivid in my memory. I accompany my dear husband to a little room where Jennifer, his inpatient speech therapist, sits him up to a table. She brings out some simple pictures or common objects. First is a picture of a table. John responds with some sound that wasn’t at all like a word and then kind of smiled as if to say “was that right”. Jennifer calmly said “table” and John obediently babbled some non-word back. As we went through that first set of cards, there were only a few objects that John could recognize and speak a word close enough that we knew what he meant. I remember feeling ever so embarrassed that he couldn’t repeat the words. I wanted Jennifer to know that he was intelligent and not some dummy. Even after a number of speech therapy sessions, I’m still in fantasy land thinking, “Well, this will probably take a few more days”.
After speech, the next part of the day involves physical therapy. Here is where they begin teaching John how to walk again. He had significant sensory deficiency on his right side, and couldn’t feel his right arm or leg. They taught him to walk like they would an amputee, to watch his leg because he couldn’t feel it touch the floor. John was strong and determined and always accomplished more than was expected. Once again, I am so proud and in some part of my mind, thinking, “This will probably take a few days”. Next we head to occupational therapy. This is where they begin to help with “life skills”. They start by having him take little pegs out of a pegboard and drop them in a little bucket. I’m not sure what life skill this is, but it’s o.k., because “this, too will probably only take a few days”.
What life skills really means to a stroke survivor is learning again which utensil to use when eating, how to shave, shower, and various other routine day-to-day activities. They are things that you and I do without even thinking. In fact we don’t even know they require brain functioning to complete. John would pick up his knife and try to tackle the soup or pudding. He didn’t even recognize why the knife didn’t work. I would discreetly hand him the spoon and say, “this is your spoon, and it will work better”. He often would look at me and I knew he wanted to try and say “spoon” so I would hold it up, say “spoon” and wait for his response which might be “spoon”, or maybe “poon”, or maybe “cup”, or some other mixture of sounds.
Life skills also involve self-care. John’s first shower upon returning home was quite the challenge. I had set everything up for him and was standing nearby. He stepped in the shower and stood there. He knew how to test the water with his good hand (they taught him that in life skills) so he started the shower and then just stood there. As I watched, I recognized he seemed puzzled, so I cheerfully directed him to the soap. He wasn’t sure what I meant, so I lathered up the washcloth and began to wash him. He understood and took over, whew, that’s better. Next I hand him the shampoo. I got the same puzzled stare before so I said “shampoo”. Same blank look, so I took his hand and poured a little shampoo into it…..there’s that blank look again. It wasn’t until I physically took his hand and placed it on his head and started the washing motion that he understood what we were trying to do. It was several weeks of my assisting him with the shower before he could accomplish this task alone. This same struggle came with each life skill. Brushing teeth, shaving, eating, dressing, combing hair, all become major challenges. By this time, I’m finally realistic enough to now say “this may take a few weeks” rather than a few days.
The story could go on and on with rich entertaining stories of triumphs and challenges, successes and failures, laughter and tears. What I know for sure is that for a stroke survivor and their caregiver, it doesn’t “take a few days, weeks, or months”, it takes a lifetime. John is a man who has worked amazingly hard to get better. He has gained the skills to help around the house and now he is driving, mowing, and interacting weekly with grandchildren. He feels like God has called him to help others who have suffered disabilities which we accomplish with our camps. His speech is still evolving and he can’t always retrieve the word he’s searching for, but on a good day when he is in command of the conversation, you would hardly know he’s had a stroke.
So, this is a story of stroke survival. It all starts with rehab but rehab never really ends. It doesn’t just “take a few days” it takes the rest of your life. It requires drive and determination, patience and understanding. It includes tears, anger, frustration, confusion, and despair. I wouldn’t have wished this on my worst enemy, but now, wouldn’t trade the experience for the world.
Stroke………rehab………life goes on. It is forever changed, but it can be good.