Lessons in disability & compassion in action

Oh the things we can learn when accidents happen. After a lifetime of glorious health, I am now learning how challenging physical disabilities can be. From a healthy 60 year old a few years ago, I have become breathless and often confused. That popular phrase “I can’t breathe!” is a daily reality for me now and these difficulties have led to numerous falls and concussions. I am now working with a pulmonologist and a neurologist for lung disease and post concussion syndrome that causes great dizziness at times.

What does illness and suffering teach us? Compassion for others who suffer. The first time I spoke directly to Mike (my husband of 16 years) after meeting him through Match.com, he told me he suffered from Chronic Fatigue Syndrome (CFS). At that time I hadn’t the slightest idea what that was or how it might impact our lives. At first he tried to hide some of his symptoms from me, avoiding me when he felt especially bad. It was only later that I learned the crushing cruelty of this at-that-time undiagnosable disease that haunted Mike for decades. He went from a strong 35 year old who could run up mountains, to chronic fatigue that worsened with physical activity, but did not improve with rest, difficulties with memory, focus, concentration and dizziness that worsened with any movement from lying down, sitting or standing. Imagine how depressing that would be for you. And worse, few physicians would believe him. They showed no compassion and would simply say, “You’re just depressed” or “See a psychiatrist.” From this, Mike learned deep compassion for those who suffer with unexplainable illnesses and disabilities. This quote from Gandhi describes Mike’s life perfectly now:

“The best way to find yourself is to lose yourself in the service of others. The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problem.” – Mahatma Gandhi

One of my favorite sayings has been this for decades:

and Guanyin, the Chinese Goddess of Mercy, my daily reminder of compassion in action.

These are some of the most important lessons we can learn in life, and we are learning them well

One boomer’s ridiculous dilemma: Beginning to spend all of that saved up delayed reinforcement!

As many of you know, my health has been failing for the past few years, and with one additional serious concussion in April, it appears clear, at least to me, that it’s time. Time for what? Time to begin spending all of that “delayed reinforcement” from the past 45 years of my life.

If you’re anything like me, you have been saving money for as long as you can remember. Why? I guess because I was completely brainwashed in the cradle to save up for my old age. So, exactly when does that “old age” begin? Strange to say, I don’t find myself as the best judge of very much lately, not with this many brain injuries! But I am fairly clear I not going to be living forever and also not sure how long my brain is going to last. One fun fact I learned recently:

Head injuries accelerate aging: “The current state of the literature provides support for the argument that TBI can result in diminished cognitive reserve which may accelerate the normal process of cognitive decline, leading to premature aging, potentially increasing the risk of dementia.”

That explains a lot! The irony in all of this is not lost on me (yet!) I have always prided myself on my excellent brain. Now what? Is it really time to begin spending my wad? I find that hard to believe and even harder to do…

When you have spent your whole life trying to save money, how do you suddenly cut loose? It’s kind of the opposite of the poor guy winning the lottery. Of course he’s going to overspend immediately, but everything in my background suggests that holding on to money is your best avenue to happiness. I know that if I don’t get some big trips planned I probably won’t be taking them. How do I loosen the purse strings? How do I give myself a luxury vacation?

I know, most of the human beings on this planet would like to have such problems, but there it is…

Please prepare now for unexpected outcomes

I’m sad to learn that my friend Rena Kaplowski died yesterday, even though she went the way she wished, in her sleep. Her passing has been a bit of a wakeup call for me and perhaps should be for millions of us. Rena had just turned 67 when she suffered a devastating stroke. Weeks of unconsciousness and intensive care followed, and she had just been moved to a rehab center when she passed.

Rena had not signed an advance directive form like Five Wishes which allows each of us to guide important medical care decisions that might be made if we should become seriously ill, decisions like whether we would like to be given life-support treatments. You may think that your loved ones and doctors will know what you want when you are very ill, but in reality, everyone has different wishes and it’s important to make them clearly known. Expressing your wishes in an advance directive helps to empower your family and other loved ones, and your doctor to make the best decisions when the time comes, and avoid disagreements about what to do next. Completing a form like “Five Wishes” can help you and your loved ones gain peace of mind around difficult end-of-life decisions.

The best time to fill out an advance directive form is now, before you face a health crisis. Because life is unpredictable, it’s best to be prepared. Anyone over the age of 18 can use the “Five Wishes” form. It is also a good idea to review and possibly update your Five Wishes advance directive when you experience significant life events like marriage, divorce, having children, or being diagnosed with a major illness. “Five Wishes” was written with the help of the American Bar Association’s Commission on Law & Aging and is used widely in all 50 states. Federal law requires medical care providers to honor patient wishes as expressed.

Remember, you will always make your own health care decisions if you are able to talk with your doctor and understand what is being said. This directive only takes effect when you are too ill to understand or communicate. If you are unable to make your own decisions or speak for yourself, an advance directive and the person you chose to be your healthcare agent, can help direct your care with your doctor.

It always feels good to do good, from homeless to a home in southern Colorado

Around a year ago, my brother-in-law drove down to Sedona Arizona to pick up my brother John. He didn’t drive and he was at the point where he could no longer live in a lean-to near Oak Creek. The weather was too cold in the winter and too hot in the summer, and the creek came up so high sometimes that it was too deep to get across for him to get into town. John has a bad case of emphysema and terrible lower back pain. He thought he would move up here to take care of my Mom after my Dad died last year.

A few weeks after moving in with Mom, he realized that that arrangement would not work long-term so he called me in Walsenburg. As luck would have it, a close friend had a house in La Veta that was empty for the winter, so John moved in to caretake. When spring arrived, my friend decided to rent that house out so John had to move, but where? He didn’t want to live with us. We have a thing about “being a burden” in our family, so he found what he thought would be a temporary place in a local motel. Being the perfect renter, the management of the place soon wanted him to act as night manager, but John wasn’t interested in that. He just wanted a small place of his own.

After he moved to Walsenburg we made sure he signed up for affordable housing asap, but were truly surprised when they found him his own apartment this past month. It is clean, quiet and extremely affordable, but had no furniture. Soon after that we ask our friends if they had any extra furniture. In no time John had a recliner, a couch, a nice rug and a bed. John is a humble man who does not expect much from those around him. He just wants a nice place out of the rain and snow to listen to NPR and play his guitar. Now he has that for the first time in years. We couldn’t be happier and we almost got him to smile!

See “The Cotton Club” Encore Edition!

I don’t know how I missed it, but this old movie from 1984 is fabulous, especially if you love 1930s music and watching Gregory Hines dance! Come to think of it, I didn’t even have a TV or go see films much in the 1980s. I was busy learning Chinese and getting degrees I would never use… But this film was so much fun for me yesterday!

For me, the most interesting aspect of this movie was the way it called attention to extreme early racism in Harlem and how those with power drew the line between black and white. Opened in 1923, the Cotton Club on 142nd St & Lenox Ave in the heart of Harlem, was operated by white gangster Owney Madden. Madden used the Cotton Club as an outlet to sell his “#1 Beer” to the prohibition crowd.

The Club was decorated with the idea of creating a “stylish plantation environment” for its entirely white clientele. As with many New York City clubs of the time period, that meant the upper class of the city. The Cotton Club at first excluded all but white patrons although the entertainers and most of staff were African American. Dancers at the Cotton Club were held to strict standards; they had to be at least 5’6” tall, light skinned with only a slight tan, and under twenty-one years of age.

The oppressive segregation of the Cotton Club was reinforced by its depiction of the African American employees as exotic savages or plantation residents and the music was often orchestrated to bring to mind a jungle atmosphere. By transforming the club into this plantation atmosphere and bringing in celebrities, Owney Madden created a demand for the Cotton Club while also helping to perpetuate widely held negative stereotypes about African Americans.

This film also got a lot of relatively new actors noticed like Bob Hoskins, Richard Gere, Gregory Hines, Diane Lane, Nicholas Cage, Laurence Fishburne, and Tom Waits(!) to name a few. I loved the music, the dancing, and the story, plus I learned quite a bit about how racism worked in Harlem in the 1930s!

A personal note: I have been noticing the age difference between the romantic lead actors in older movies lately. In this case the age difference between Richard Gere and Diane Lane is 16 years! Talk about robbing the cradle…

Do you ever write anything personal any more?

I was astounded by this statistic on CBS Sunday Morning today:

22% of Americans under age 45 have never written a personal letter

When I think back to the many personal, intimate exchanges I had with past friends and lovers, I simply cannot believe that we no longer communicate on that level and in that way. I still have and treasure letters from old boyfriends in my twenties and thirties. It makes me sad, but also amazes me that this no longer happens.

“In the future old ‘love letters’ may not be found in boxes in the attic but rather circulating through the Internet, if people care to look for them,” said Webster Newbold, a professor of English at Ball State University in Muncie, Ind.

Consider this, we are experiencing a loss in what people in the future will know about us. The loss is incalculable. In earlier times the “art” of letter writing was formally taught, explained Newbold. In fact, in old China a person’s character was judged by the strength of their letter writing abilities.

“Letters were the prime medium of communication among individuals and even important in communities as letters were shared, read aloud and published,” he said. “Letters did the cultural work that academic journals, book reviews, magazines, legal documents, business memos, diplomatic cables, etc. do now. They were also obviously important in more intimate senses, among family, close friends, lovers, and suitors in initiating and preserving personal relationships and holding things together when distance was a real and unsurmountable obstacle.”

Aaron Sachs, a professor of American Studies and History at Cornell University, said, “One of the ironies for me is that everyone talks about electronic media bringing people closer together, and I think this is a way we wind up more separate. We don’t have the intimacy that we have when we go to the attic and read grandma’s letters.”

I have found through the years that writing helps me realize more clearly how I feel, and what I really need to say to those I love. The process allows me to crystallize my thoughts, and then tell the other my most intimate feelings. Is that practice also gone? Will there be no physical record of any of this in our future? This more than most changes to our culture makes me glad that my days on earth are minimal.