Isolation in a Crowd

Don recently felt isolated and sad in a gathering of people he did not know. A group of men stood and visited among themselves not far from where Don sat, but they did not engage with Don. Later Don told me, “They think I’m dumb.” That is what Don concluded, even though I doubt if people think that or realize how they may be ignoring him, He feels bad when he cannot follow fast conversations and cannot think or speak quickly enough to interject his ideas, so he often resists attending large social gatherings.

Don cannot easily stand for long or move around in a crowd to engage with people, so he finds a spot to sit, and people have to come to him. Years ago when Don used a wheelchair, he sometimes felt people literally and emotionally looked down at him. It is frustrating not to be able to interact with people the way he did before his stroke. That used to be one of his strengths.

Don still loves to listen to stimulating conversations, and he loves to think about deep matters. It is just more satisfying for him to interact one-to-one or in small groups of people.

What helps us cope and gives us hope:  Don cultivates many individual and small group relationships that are very satisfying to him. For Don’s sake, I need to try to remember not to talk too much when we are with friends and instead to turn conversation toward him. Don always feels so good when people ask for his opinion. He often expresses profound insights. He is not “dumb.”

Questions for our readers:  Do certain social situations make you feel “dumb?” What can the rest of us do to help you avoid or overcome those feelings?

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Sobering Options

A fellow caregiver emailed me, “How is your health? Do you have days you feel lousy and don’t really know why?”

Recently I have had days I felt completely lazy and unmotivated. I have been tired but shouldn’t have been. I’ve had less self-control with eating and using my time. This evening I found some insight.

Don has an appointment next week to check the growth of his abdominal aortic aneurysm. For several years, these appointments have come around every twelve and more recently every six months. Each time, we wonder if the aneurysm has enlarged enough that Don will need surgery.

This is big for Don. He is a poor surgical risk for various reasons and could die or have profound complications from the surgery. As he approaches his appointment, he has been mulling over sobering options. Like some people who receive a grim cancer diagnosis, Don wonders if he should choose treatment with its risks, or if he should instead decide to “live until he dies.”

Tonight Don said, “I think I’m leaning more toward having the surgery. When I think of you and the grandkids…” This marked a change of thought from recent weeks.

I know this issue has weighed on Don, but I didn’t realize or admit until tonight the effect on me. It now makes sense why I have felt lazy, unmotivated, tired, and lacking in self-discipline.

What helps us cope and gives us hope: Family members and friends have listened to Don’s sobering deliberations and supported him. Their love and our love for each other, along with prayers for wisdom, give us confidence that when the time comes, we will know what to do.

Questions for our readers: What sobering inevitabilities sometimes weigh you down? What helps you cope?

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Positive or Bitter – a Choice

Don made a significant choice as he settled into his rehabilitation. One day he said to me, “I didn’t intentionally cause my stroke. It just happened, and I can’t change that. I don’t want to become bitter about it.”

Don’s choice of attitude was consistent with his personality. I was amazed he could make that decision so early in his illness. Don’s resolution made a huge impact on his life and on our family. I watched his positive attitude help his disposition and draw people to him instead of drive them away. Don’s model inspired the boys and me to choose the same approach. We all benefited from Don’s wisdom.

Don and I agreed that we simply did not want to focus on bitterness and waste energy we could better apply to his recovery. We did not have to deny the pain; we just did not want to let our losses fester and control our lives.

The stroke just happened. To grow angry and bitter would only hurt Don and strain his relationships with our family and friends.

Don’s decision not to become bitter was difficult, and he occasionally needs to revisit his choice. However, his determination to be positive, instead of bitter, has affected the quality of our lives in such a positive way that we highly recommend it.

What helps us cope and gives us hope: Don had the wisdom and the inner strength to choose not to get bitter after his tragedy. We did not choose Don’s stroke, but we can choose how we deal with it. That gives us hope!

Question for our readers: How do you struggle between the choice of becoming positive or bitter? What helps you avoid bitterness?

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Fear – a Recurring Issue

In a few days, Don and I will talk with a group of counseling students about issues faced by people with disabilities. As I compiled a list of issues people like Don and I struggle with, I pulled from our experience to try to give insight to the students. Although everyone’s experiences are different, we probably have a lot in common with other individuals and families who struggle with disabilities.

One issue we deal with is fear. At first when Don had his stroke, I feared he would die. As it appeared that fear wouldn’t happen immediately, I moved on to worry about our children, finances, safety issues for Don…the list was long. Don worried about our family’s pain if he died, about falling, about having another seizure, about me leaving him, about saying the wrong words, about getting back to work… We didn’t worry all the time, but fear crept into our lives over and over.

Fear appeared again for me last week when I questioned Don about going out for breakfast with a friend in 5 inches of new snow, and he said, “I need to get out.” There was a period at the end of his sentence. He went, and he returned safely. Things could have turned out differently, but again, all my angst was for nothing.

Last week I heard a quote from Mark Twain, who wrote, “I am an old man and have known a great many troubles, but most of them never happened.” Isn’t that the truth! Actually, fears are not the truth. They amount to negative, misguided speculation that runs rampant in our minds.

What helps us cope and gives us hope: We acknowledge that fear is not usually productive. It helps to ask ourselves what truth is and try to let go of unrealistic fear. Don is better at that than I am. We try to be kind and not provoke each other’s fears, and when we fail, we hopefully apologize.

Questions for our readers: What fears plague your mind because of your disability or your loved ones disability? What helps you cope?

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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?

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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?

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Nothing Good Happens Fast

Our friend Jim tells of the wise counsel given by a doctor when he and the wife of a patient who had been in an ICU for a month expressed a little impatience with how long the recovery was taking. The doctor looked them in the eye and very kindly but frankly noted, “Nothing good happens fast.” Our friend adds, “Bad things can happen very fast; the good stuff usually takes time.”

Most of us have had terrible, pivotal days in our lives, with illness, death, disappointment, loss… I’m sure you’ve also felt alone and impatient for “bad things” to cease.

A stroke turned our lives upside down “very fast.” It happened almost twenty-three years ago. Weeks of therapy, months of work, years of missing our past at times made us impatient. We hoped for complete recovery, but it didn’t come. “Nothing good happened fast.” However, as we look back, we can see that good did come – in time. Don has improved so much – more quickly at the beginning – but improvement has continued over the years.

What helps us cope and gives us hope?
When we compare how Don used to be to how he is now, we see that much “good stuff” has happened in his recovery. We also are encouraged as we look back over all the years since Don’s stroke and realize we have seen our kids grow up, seen them marry wonderful young women, met and loved our grandkids, had great times with friends, and celebrated more anniversaries than might have been predicted. We are grateful for all the good that has happened to us.

Questions for our readers:
Do you struggle with impatience in your recovery from stroke or other bad things in life? Have you in time been able to see “good stuff” happen?

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