While standing at the kitchen sink doing dishes yesterday, I looked out the window, as I often do. It’s really more of a habit than anything else – I guess to see what the world is doing while I’m doing dishes.
My neighbor was out on her deck, taking advantage of the sun, probably knowing that it will be one of the last few really good days of sun and warmth we’re going to see before old man winter settles in.
About a year or so ago she was diagnosed with ALS. It had started out with her fingers on her dominant hand beginning to curl, like talons, and become useless. She saw a specialist in New York City and now gets some sort of infusion, presumably to slow down the progress of the disease that ravages the body so much. One needs only to remember Stephen Hawking to know how much damage ALS can do to the human body.
As time has passed, she has had more and more problems. She told me a couple of months back that she has trouble just standing, and has to hold on to something to keep herself stable.
As I watched her out the window, she appeared to be frustrated with her inability to operate her iPad, as her other hand now has the curling fingers. She uses the back of her finger and has to move her whole hand to swipe things on the screen. She cannot pick up her granddaughter, nor can she hold the leash for her grand-dog. I have seen her husband have to help her into his pickup truck, and he always stood behind her or beside her when she was walking, at the ready lest she fall.
Anyway, her frustration was palpable and more often than not, she just stared off into the back yard. I wondered what she was thinking.
Twenty years ago she and her husband had their oldest daughter taken from them in a senseless act of stupidity by a man who thought nothing of driving a tow truck after having had a few beers (or whatever). He’d had prior DWIs and was working on a revoked license on the day my neighbors’ daughter was killed by him.
I wondered if, while staring off into space, she was thinking about the unfairness of it all, having lost her daughter and then lost her ability to enjoy and nurture her grandchild because of this disease.
I didn’t realize I had been watching her so intently until her husband came out to help her inside. She had to put her arm around him as he half-lifted her out of the chair while she helped as much as she could. Once he got her on her feet, she took his arm and was only able to shuffle through baby steps to assist in her ambulation, much like you’d see from an elderly person 20-30 years her senior.
It breaks my heart to see her this way. For years and years, she was the one who mowed the lawn and cared for the house and was just always on the go, go, go. She exercised regularly to keep her trim figure and was just always so vibrant.
But maybe, just a little bit, I’m heartbroken because she’s the same age as me and, like that old expression, “There but for the grace of God…”
I ache a lot these days and my feet hurt almost all the time. My knees and ankles protest having to support the bulk that I have added over the years and, especially, in this past year. I’m getting a taste of what being “old” feels like and I hate it. I absolutely cannot imagine what it must be like for her.
I do know this, though. Her husband (who is retired) is always there helping her out. If he leaves the house, he’s home quickly. She told me that he has stepped up and taken care of things like laundry and vacuuming, especially anything involving care of the downstairs where she just can’t go. They looked into a chair lift system for the stairs, but decided it was too expensive. So, he does everything and is always cheerful and smiling around her. He was definitely a good choice almost 40 years ago when they married.
WITH treatment, according to the ALS Association, half of all people affected with ALS live at least three or more years after diagnosis. Twenty percent live five years or more; up to 10 percent will live more than 10 years.
While I rail against big pharma, it’s times like these that I am given pause to think about everything that goes into research and development of modern pharmaceuticals. My own injection for psoriasis (which completely cleared all the scaly plaques from my body) is over $9,000 PER INJECTION. I would expect that her infusions are quite costly as well and, like me, they have really good health insurance. And, without those infusions, where would she be with the ALS?
But it’s also times like these that reinforce the need for a single payer health care system. Why should all of the treatment available to my neighbor (or me) be available to us ONLY because we have the means by which to pay for such excellent health insurance? And why has GoFundMe become one of the biggest sources of “health insurance” in the country? So big pharma can make $9,000 plus off my psoriasis injections (they made $72 BILLION last year) or $146,000 annually off one person’s infusions to stave off the ravages of ALS (they made $105 BILLION last year)?
Last year the makers of EpiPen made $11 BILLION. GlaxoSmithKline (makers of AIDS drug AZT) made $7.3 BILLION.
Clearly big pharma is big business and big profits. But just how many BILLIONS of dollars does anyone really need? Enough to control the world around them, apparently. Enough to “buy” regulatory agencies’ cooperation in making more money. Enough to “buy” politicians’ votes for or against things the pharmaceutical companies want. Enough to live lavish lifestyles while low-income people die for lack of affordable drugs.
The CEO of GlaxoSmithKline recently made the news because, as a woman, she’s making 25% less than her male predecessor – a “mere” $1.25 MILLION. It must be tough to make ends meet on that.
When is enough enough?