Trapped – a Little Escape

I was reminded today of how people can feel trapped – trapped in their own bodies, after serious illness or disability strikes; trapped in their situation, as they are cared for or as they care for a loved one; or trapped by their longings for how life used to be.

I appreciate affirmation and physical touch more than gifts. I am so thankful Don is exceptionally good at affirming my worth. However, he usually likes to sit alone in his recliner, and he loses his balance easily when he stands, so he almost never initiates tender touch on his own during the day. I really miss the chance to sit by him and feel close. Both Don and I soak in peace and joy from lying close to each other in bed at night. We can’t see the changes to Don’s body; he can’t lose his balance and fall; and if we just lie there, we don’t miscommunicate. We can briefly forget or ignore that life is the way it is. It’s a little escape from the traps that sometimes confine us.

We also have difficulty thinking of things we can both enjoy doing together. The last two nights we have looked at slides we took back in the 70s. It was fun to remember our adventures, our first son as a baby, our friends and family.

What helps us cope and gives us hope: We make up for our loss of touch during the day by lying close before we go to sleep. We remember old times together in pictures.

Questions for our readers: Do you sometimes feel trapped? What helps you cope?

“LEAVE A COMMENT” below to join a public conversation. We moderate responses to our blog to avoid spam and language or comments we consider inappropriate, so there will be a delay (hopefully short) before your comments are visible.

Click the blue “Follow STROKE SURVIVOR” sidebar button to subscribe to our blog and receive notices of new posts.

Don’s Stroke: twenty-three years ago today

Twenty-three years ago today, March 19, 1991, Don had a stroke that changed our lives forever. We don’t celebrate the anniversary, but when it comes, we remember. That was a terrible day in our lives.

Don had two TIAs the day before so was admitted to the hospital for observation. When the boys and I left him that evening, he had no abnormal symptoms and told me to call in the morning to see what time I should pick him up.

When Don finally picked up the phone on the 19th, he spoke to me in profoundly garbled words. Minutes later when I burst into Don’s hospital room, my forty-year-old husband looked like an eighty-year-old man clinging to the edge of life. The rest is our story: shock, pain, loss, love, fear, family, friends, God, rehab, recovery, deficits, choices, compensation…

We eventually discovered there is life after stroke. It’s different than we planned, but life is still good.   The stroke was a terrible event, and yet when we look back over twenty-three years, we see countless wonderful events and relationships that have added meaning and joy to our lives.

What helps us cope and gives us hope: We acknowledge our pain and loss and then think of all we still have.

Question for our readers: When you look back at change and loss in your life, does it help to think of the good things you have also experienced?

 

 

Humiliation and Compensation

I humiliated myself on Saturday, when I cut my hair, as I usually do to save money. I cut the top with scissors, the lower back with the electric clipper, using the half-inch comb guard, and then took off the attachment to trim the bottom edge. When I checked for uneven spots, I found a longer area above and behind my right ear. So I picked up the clipper to finish the job. I immediately saw a glob of hair fall on the bathroom counter and instantly realized that I had forgotten to replace the comb guard. I wear my hair short these days, but I had scalped myself down to the skin. The mirror reflected a hideous sight. It will never grow out before our next speaking engagement!

Stroke survivors often acquire disabilities that lead to a sense of humiliation. After his stroke, Don felt exasperated that, in spite of having a PhD, he could no longer read. Until he started taking Detrol, Don felt mortified on those occasions when he was unable to walk fast enough to reach the bathroom in time. Don used to be self-conscious at how people looked at him in his wheelchair, and even though people are usually kind, he still reacts the same way sometimes when people look at him as he walks. Don is often embarrassed that he says things that are different from what he means. He feels humbled that he can no longer work. He also often remarks that he is ashamed that I have to do so many things he believes should be his responsibility.

What helps us cope and gives us hope:

I have compensated for my temporary humiliation by sketching in my missing hair with eyebrow pencil. I also decided to humble myself and entertain my friends with a pre-eyebrow pencil photo. However, Don’s humiliation is long-term. He compensates with humor, medication, acceptance of his losses, and acknowledgment that he still have value, in spite of his inabilities. These compensation skills often involve hard choices, but they help Don cope.

Questions for our readers:

Do you struggle with humiliation that shuts you down and isolates you? How are you able to combat that shut-down and isolation and compensate for your humiliation in a more healthy way?

“LEAVE A COMMENT” below to join a public conversation. We moderate responses to our blog to avoid spam and language or comments we consider inappropriate, so there will be a delay (hopefully short) before your comments are visible.

Click the blue “Follow STROKE SURVIVOR” sidebar button to subscribe to our blog and receive notices of new posts.

We Need Encouragement

We all need someone to tell us we are valuable, remind us we are loved, and encourage us with hope for the future. Those of us who live with disability or serious illness or loss especially need it, but really, everyone needs encouragement.

Don came home from breakfast this morning, telling me how much he and his friend appreciate each other. Today when my sister and I finished editing a writing project over the phone, we mutually decided it was much better than when we started. At Don’s PT appointment today, his therapist reminded him of movements he can now accomplish that he couldn’t when she started working with him. Both she and Don expressed appreciation to me for helping Don with his exercises at home. This afternoon a young friend stopped by our house to visit. His smile and hug as he left made us feel he appreciates our interest and care for him. We had a good day!

I am reading a book by Nick Vujicic to Don. Although Nick was born without arms and legs, he is incredibly positive. He inspires and motivates Don and me with his attitude and stories.

What helps us cope and gives us hope? When Don or I get down because of our circumstances, we usually have to turn our focus away from ourselves toward other people. Don is good at that. Most days he gets out of the house to visit or eat out with a friend. He visits other men who have had stroke or TBI and keeps up with several long-term friends. Don also smiles and talks with strangers and tries to improve their day in some way. Relationships with people are a huge source of encouragement to both Don and me.

Questions for our readers: When your circumstances get you down, are you able to find positive people with whom you can be friends? Are there people who inspire and motivate you? Do you try to befriend and encourage other people?

“LEAVE A COMMENT” below to join a public conversation. We moderate responses to our blog to avoid spam and language or comments we consider inappropriate, so there will be a delay (hopefully short) before your comments are visible.

Click the blue “Follow STROKE SURVIVOR” sidebar button to subscribe to our blog and receive notices of new posts.