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 of my favorite movies EVER!

Raised in small towns in Iowa and Kansas, my first memories of Asia were greeting my Dad when he returned from his regular journeys to India. He always brought back beautiful souvenirs and slides to show us. As a child, the strangeness of this very different culture halfway around the world, fascinated me. I was also introduced to Indian music and food very early. To this day they are my favorites!

This is all to show you why I fell in love with the film “The Namesake” at first sight this week. The music, from the very beginning, with Tabu’s incredible voice(!), is exquisite. I couldn’t help but wish that this experience came with a lovely, big Indian meal. Mira Nair is my new favorite director. I must see more of her films! But what struck me the most was the emotional depth of her style of storytelling and the beauty of the people of India. That and how much I was drawn to the actor Irrfan Khan, who died this year at 53. He was truly “distinguished and charismatic” and “an enormously valuable bridge between South Asian and Hollywood cinema,” according to Peter Bradshaw of the “The Guardian.” I also loved him in the film “Puzzle” from 2018.

Coming to America….

The story is quite simple. The Namesake depicts the struggles of Ashoke and Ashima Ganguli, first-generation immigrants from West Bengal to the United States, and their American-born children Gogol and Sonia. The film takes place primarily in Kolkata India and the New York City area. I was constantly reminded of generational differences in my own family growing up, as this first generation American family struggled with the different cultures of India and America. And we thought our Dad didn’t understand our generation! Imagine what is must be like if your parents are from a culture a world away.

The film is also an excellent example of the contrasts between Eastern and Western cultures. The East is far more family and community oriented. They find Americans self-centered and even selfish. In the West we do what we please, especially when we are young. Family may become important later for us. I found this film to be a commentary on the toxic loneliness of American society today.

Northern Thailand, 1973

Ever since I lived in Bangkok in 1973-74, I have found Asia to be so different and yet so fascinating. As a teenager I felt almost like I had gone to the moon, everything was just so different compared to Kansas and Colorado. In college, graduate school and in my career as a librarian, I worked to bring these two worlds closer together in the eyes of Americans…

but now I can see that movies like this do the most for us all to truly understand and appreciate our own shared humanity. There is no world that needs this more now than the human race. I found this film so soothing…

Living in post-truth America

At the beginning of this season of commercialism on steroids, I often become cynical about our world. This year I am not feeling alone in this impulse. Why not ask the Chinese youth who are feeling drawn to the “lying flat” movement? Everything I surround myself with suggests that our future is grim and getting grimmer. After observing the complete naivete and gullibility of the American public when it comes to politics and after watching the film “Truth” (2005) this morning, I feel certain that the ‘truth may be out there,’ but it has no chance of revealing itself in today’s world.

As a lifelong purveyor of the wisdom of searching out the truth through extensive research and critical thinking, the stupidity of believing “it must be true, I read it on the Internet” may well be the end of everything I value in our world. The film “Truth” gives some much needed insight into the beginning of end of ‘truth’ here. This story is a microcosm of the loss of critical thinking in our world today.

In 2004, Mary Mapes, a CBS producer and a number of reporters began to research the truth behind President George W. Bush’s military service in the early 1970s. This story eventually ended up on CBS 60 Minutes. The story suggested that, thanks to help from his father’s friends, Bush was able to sign up for the Texas Air National Guard rather than serve in the Vietnam War. Texas Lieutenant Governor Ben Barnes admitted that, in addition to Bush, he’s also helped the children of several other influential Texans to avoid service in Vietnam.

The CBS story was supported by documents purported to be from the files of Bush’s commanding officer, the late Lieutenant Colonel Jerry B Killian. Immediately after the story aired, it was the subject of harsh criticism from truth-tellers like Rush Limbaugh and bloggers who created an immediate smear campaign, attacking the authenticity of the documents. Allies of Bush claimed that the story showed media bias. The Killian documents were reportedly found to be forged. Mary Mapes was fired from CBS. Dan Rather stepped down as CBS anchor after 40 years there.

Later, Mapes said Karl Rove was “an inspirational figure” in the criticism of the 60 Minutes segment. Rove called Mapes’ work “the gift that keeps on giving” due to the story’s “lurid foundations” and the boost it gave to President Bush during his reelection campaign. But some Bush critics suggested that the memos originated from the Bush campaign with the purpose of discrediting the media for revealing Bush’s National Guard service as a giant distract to change the conversation from subjects like the unpopular Iraq War.

Do you see the beginnings of future distraction campaigns and media manipulation? Why bother finding out the truth about any situation? Just decide what you want the “truth” to be and then repeat it millions of times on TV, radio and the Internet. Truth or reality is not useful or even important anymore.

Tellingly, a few days after Trump’s election, the Oxford Dictionaries announced that “post-truth” had been chosen as the 2016 word of the year, defining it as a condition “in which objective facts are less influential in shaping public opinion than appeals to emotion and personal belief.”

Do you smell the end of democracy in these changes, because I do, and soon! I see it as laziness plain and simple. Why spend all of that time researching something when you can just grab anything off the Internet and believe it’s true? And BTW, if your truth does not match that of others, you may be severely punished. Mary Mapes was constantly threatened after that 60 Minutes story broke in 2004. Bring on the brown shirts, a “Nazi paramilitary organization whose methods of violent intimidation played a key role in Hitler’s rise to power.” — https://www.britannica.com/topic/SA-Nazi-organization

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!