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!

Early radium & X-ray use and later cancers

It wasn’t until around 1920 that we realized some control over the use of X-ray and radium were necessary. The best example in American history of our lack of understanding of the dangers of radioactivity, was the extensive use of radium in luminous paint during the First and Second World Wars.  This paint was used to illuminate the faces of watches and U.S. army issue compasses. The radium-activated paint was applied by brush and the painters, mostly young women in New Jersey and elsewhere, found they could work faster by tipping their brushes with their lips, thus ingesting large amounts of radium.

The Radium Girls hard at work painting watch faces and compasses

In those days, very little attention was paid to the safety of workers. Dial painters were irradiated from the paint which contaminated their workplaces and from the inhalation of radon.  The hazard was first recognized in 1924, when a New York dentist identified a new disease which he called “radium jaw” which he found regularly in patients who were ex-dial painters.  The first bone sarcoma was recorded in this group of women in 1923 and one third of them eventually died of various cancerous malignancies.  The data derived from the experiences of these unfortunate young women eventually helped to set new radium tolerance levels.

Despite the realization that radium could be used to kill malignant cells, the public became besotted with radium as a general panacea for many illnesses.  A number of potions were sold containing radium, the most famous being Radiothor. Four hundred thousand bottles of this quack remedy, which was said to cure a range of maladies from stomach ulcers to impotence, were sold between 1925 and 1930. 

My grandfather was a very early adopter when it came to X-ray technology. Like so many, he felt that this new technology could solve a lot of problems. In fact he took a correspondence course in using X-ray on humans probably in the 1940s, and then traveled around providing X-rays where needed. Although little was really known about radiation risks from the 1930s to the 1950s, American shoe stores supplied shoe-fitting fluoroscopes, which allowed customers to see the bones in their feet, a gimmick to ensure “a proper fit.” The practice ended in the 1950s when it was determined to be a risky practice due to the radiation, and shoe clerks had no formal medical training in using X-ray technology.

When my grandmother developed major problems with her periods in the early 1960s, my grandfather decided the best solution was to use X-rays to radiate her ovaries. In the mid-1980s my grandmother developed stomach cancer and died soon afterward. Gee, I wonder why that cancer developed in the exact same region as the earlier X-rays?

Early chest X-rays used constantly with little regulation

In addition, two women I know well, including my own Mom, received annual chest X-rays in grade school to check for tuberculosis. Both of these women developed breast cancer in their thirties. How many more women were exposed to unneeded radiation in grade school?

Back then, X-rays were used to treat ringworms, acne, menopause discomforts, mental patients and even facial hair removal in beauty shops. These were largely uncontrolled misuses of radiation because there were no specific legal regulations governing radiation safety at the time. One has to wonder how many cases of cancer decades later were at least partially caused by our unwise confidence in X-ray as a cure for all ills.

To learn more about the Radium Girls’ tragedy go here to read an article published in History Magazine in October 2007 by me.

Is our life better than previous generations?

I suppose the thought that stays with me after reading about my ancestors’ journey through life, is how difficult their lives were compared to ours, and yet so many of us struggle with our own challenges today. What has changed between previous generations and ourselves?

‘… and which is worst of all, continual fear, and danger of violent death; and the life of man, solitary, poor, nasty, brutish, and short’ (Leviathan, i. xiii. 9) — Thomas Hobbes, 1651

I am certain that our lives today are so much easier in so many ways compared to my great grandmother and grandmother. In fact, let’s face it, most of us are living much better than most in human history.

I feel so lucky to be alive today! How do we appreciate these differences without undervaluing our own daily challenges?

Mom and I at my wedding in 2005

For example, I know there were members of my mother’s family who suffered from mental illness and dementia in their later years. So much was not known about these illnesses fifty or one hundred years ago, and with misunderstanding came criticism, stigma and heavy judgment. My Mom’s first cousin was sent to the Kansas Mental Hospital where he killed himself by consuming pesticide!

Dementia sent my Great Grandfather McGrew to the Kansas mental hospital at the end of his life…

Today there is counseling and many new drugs to ease our physical and mental pain. There are people like Stephen Levine to help us accept ourselves more fully instead of torturing ourselves with harsh self-judgment. I know I would not be half as healthy and happy as I am today, if I had not had some excellent counseling in my thirties. Since I suffer from a shortness of breath, I wonder what happened to others back then with lung disease. And what about head injuries?

Do you see how lucky we are to have a better education, better science education and many more options because we were born in this age? Have you seen that new TV commercial that says:

Do you know anyone with polio or smallpox? Vaccines work.

It is so hard to watch so many suffer because they refuse to believe that we HAVE MADE PROGRESS! Our lives can be better through education, science and yes, even chemistry. That some refuse to use these tools to better their lives is a travesty and a human tragedy of personal choice…