I AM THE APPLE – Marilyn Armstrong

It occurred to me I needed to see my spine specialist. When you deal with chronic pain, you learn to ignore it most of the time. Unless you want to wind up addicted to pain killers, it’s your only option. It’s a practical decision. Do I want to keep participating in life? Then I have to deal with what I have to deal with. That’s the way it goes.

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Long-time ago, I was doing my mother’s hair. I liked fixing her hair. Hers was easy to style. Thick, silver and just a bit wavy. I asked her to turn her head to the right, and she did. When I asked her to turn her head the other way, she said: “I can’t.”

“You can’t? Why not?”

“Because my head won’t turn that way.”

“What do you mean by that?”

“My neck is stiff.”

“Um, mom? How long has it been like this?”

She thought for a while. “Fifteen years? Something like that.”

That stopped me. Fifteen years? “Have you seen anyone about it?”

“No,” she said. “I figured I was just getting old.”

At the time, I thought her statement was bizarre. It turned out she had treatable but advanced tendonitis and it got better. She hated doctors and hospitals.

Time marched on. I’m much older now than my mother was then. I fully understand her response. When I called the doctor for an appointment, I discovered the last time I’d seen him was more than six years ago.

To be fair, I’ve had a few medical crises since then and I got distracted. Besides, I know what’s wrong with my back. It isn’t going to kill me. I’ve lived with it most of my life. I’m used to it and do my best to ignore it.

Right to left: Aunt Pearl, my Mother (Dorothy), Aunt Ehtel (Uncle Herman’s wife), and Aunt Kate.

Recently, though I’m having trouble walking, even on flat surfaces and going up and downstairs is especially difficult. It crossed my mind there might be something he could do — some medical magic — to improve me without major surgery. I already know surgery isn’t an option.

My doctor is wonderful. The best. The only doctor who can look at my spine, not gasp with horror and immediately decide I need to be rebuilt with screws, pins, and bolts. He’s a minimalist, medically speaking. I appreciate that.

I made an appointment and got lucky because there was a cancellation. It usually takes five or six months to get to see him, but I only had to wait a few weeks. He’s the king of spines in Boston, maybe in the country. I would have willingly waited six months if I had to. Of course, as soon as I made the appointment, I had to make another appointment because I need new films for my spine. I also haven’t had a CT scan (I can’t have an MRI because of the magnetic pacemaker in my chest) in six years and he isn’t can’t see much without fresh films.

I wondered how come I hadn’t processed the fact I can’t walk normally? I suppose I wasn’t paying attention. I was busy ignoring pain.

I was being my mother.

She taught me to be a soldier. She didn’t use Novocaine when she got her teeth worked on. I asked her why. She said, “Pain is good for your character.”

Tree Silhouette in B & W

She meant it. I grew up believing that giving in to pain was a weakness. To a degree, it serves me well, but sometimes it can be dangerous. If you ignore the wrong stuff, it can kill you. One needs to find balance, but that’s not easy.

Watching a documentary on Ethel Kennedy reminded me of my mother, except without the millions of dollars.

Mom was an athlete and I know she was baffled at how she wound up with such a klutzy daughter. She played tennis. She rode horses, played ice hockey. She went bob sledding. She painted, sculpted, designed and made her own clothing. She also never got past seventh grade, so she made up for it by reading everything. She had a truly voracious appetite for life and knowledge.

After a radical mastectomy, she couldn’t play tennis anymore, so she played a ferocious game of ping-pong. She played savagely. She served so hard it was more like a bullet than a ping-pong ball.

As a family, we vacationed in dinky little resorts in the Catskills where there was no entertainment. The one thing they always had was a ping-pong table. So I played against my mother.

She didn’t believe in any of that “let the kid win” stuff. She was a competitor. You won or lost. Trying hard was irrelevant because she expected nothing less. She slaughtered me.

As I got older, I played better but she still always beat me. She told me she was giving me an advantage by playing with her left hand. I knew she wrote with her right hand, so I assumed she was a rightie. Until the day my aunt told me she had always played tennis with her left hand. My mother was psyching me out. Her own daughter.

I never beat her, but I beat everyone else.

She passed me her determination to never give up, to do everything I could as well as I could. Later in life, I realized I didn’t always have to be the best. Playing a game for fun is worth something too. Another lesson learned a bit late.

The older I get, the more I remind me of my mother.

So I went to my doctor and he told me there was nothing he could do. I needed to see a pain specialist. No fix. Progressive. Irreversible. I sighed and accepted it. I hoped there was something he could do. Nope.

We all miss stuff. Some of it intentionally, more accidentally. Sometimes, I miss something important because I’m busy ignoring something else.

I am an apple. Mom was my tree. I fell, but not very far.

AN ADHD SUCCESS STORY – A GUEST POST FROM DAVID KAISER

Hello everyone! I am the 35 year-old “success story,” David, that my mother Ellin wrote about in this blog entry. I put success story in quotes because, like all of us, I am still a work in progress. Frankly, have not entirely let go of the demons of growing up — and living with ADHD.

I have a few thoughts to share, especially with those still battling these demons, parents with ADD and ADHD children, as well other family members who face these challenges.

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It’s easier as an adult to see the strengths of having ADHD (hyper focus, for example), than to see it as a child. However, it doesn’t have to be that way, at least completely.

Everyone can benefit from what I was taught in college and learned on my own about dealing with learning disabilities. ADHD or LD is not a prerequisite to benefiting from being embraced and embracing yourself as an individual. I have seven non-verbal learning disabilities as well as ADHD. There was and is a lot of stuff going on.

Focus on your strengths. Use them combat your weaknesses.

No one is good at everything. Some of us are square pegs and will never fit in typically round holes. Concentrate on things you are good at. Build your career of things you do well and about which you are passionate.

Of course you need to get through school first, but even there, by focusing on what makes you special and unique, you can push through, in college more so than high school.

In college, the answer is more important than how you reach the conclusion. That’s where I struggled in high school. I would say, “I can get the answer, but not your way.” That never seemed good enough. In college, and even more in the professional world, answers are critical. Unique perspectives can prove good, as well as profitable.

Be organized! Find a way to do it comfortably and effectively. Organization helps everyone.

Never forget that everyone is an individual and unique. Encouraging all youngsters to do what they are good at and rewarding them for it would help everyone. Further, instead of telling everyone they are a “winner,” which, even to children seems disingenuous, reward them for what they do well. Help them develop a sense of purpose and pride in their individuality.

Bottom Line

Everyone should be taught to embrace what they do well and not forced to focus on what they do poorly. Especially not at the same time.

Everyone needs to learn math even if writing is their specialty, but if you focus on figuring out what makes someone good at writing, it will help them with math and other studies.

This would be a big improvement educationally for every child, ADHD or not.

LIVING WITH ADHD … BEFORE IT WAS FASHIONABLE – ELLIN CURLEY

My son had ADD and ADHD in the 80’s before the diagnosis came into fashion. He was going to an expensive private elementary school in New York City. He was bouncing off the walls and “disrupting” his class.

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He spent a lot of time out in the hall, resulting in huge gaps in his basic reading, writing, and arithmetic knowledge … and only exacerbated the situation. Eventually the school called my husband and me into the office and told us our son had a problem. They told us we should get a tutor and a therapist to handle it. They could not (would not) deal with it.

We already had a therapist and didn’t think a tutor was the answer. We decided to move the whole family to our weekend home in a small Connecticut town where the public school system had a Special Ed Department. Shortly after the move to Connecticut, a new therapist diagnosed my son with ADD and ADHD. She put him on Ritalin in its most basic and unrefined form. The drug has come a long way since.

ADHDBlogRitalin was a mixed blessing. It had major side effects and only worked a few hours a day. At least we finally had a diagnosis and knew what was wrong.

The local public school had staff and programs to help my son academically and socially. We were surrounded by caring people who were at least trying to help.

Unfortunately, back then, understanding of ADHD and how to help kids with learning disabilities was very limited. In the end, all they could do was hold his hand and get him through each year. It damaged his self-esteem. He never developed confidence that he could succeed at anything.

We were lucky. We found a college in Vermont. Landmark College is solely for kids with learning problems. There, for the first time, my son was given tools to cope with his issues. He learned ways to work through and around them so he gained a sense of control over himself and his life. He began to function well. The school taught him how to build on each small success.

He learned to tell when he could get things accomplished and when it was a waste of time to try. He learned how to break each task down into manageable steps, to organize his time, work space, and work.

ADD positive attitude concept on cork board

He uses these skills in his job with a hedge fund in New York. He uses them to get the laundry done, to keep his house stocked with essentials.

He’s doing well now, but it saddens me to think how different he might be today if he had learned these coping skills in kindergarten rather than college. He could have skipped years of feeling inadequate, helpless, and hopeless. He might have enjoyed learning, explored other career paths. Above all, he’d feel would have felt better about himself.

Supposedly, schools and parents are better equipped in 2015 than they were thirty years go. Hopefully they have learned to support families and children with learning and behavior issues. I know there are many new drugs, presumably more refined and effective. Hopefully, new approaches to ADD and ADHD are more sophisticated. I hope kids with disabilities are given the tools to take control of themselves and their lives at an early age, before the damage is done.

That’s what I hope. Everyone talks about it, I’m just not sure what the reality is.

ROCKS. BOULDERS. LIFE.

A rerun (with editing) from 2013. Shorter. Pithier. No less true.

Asking for help is easy. Getting it may not be.

I don’t mean getting someone to review your post or help you carry a heavy box up the stairs. Those are easy things, no big deal. You’ll happily do such things for anyone, even a stranger … and they for you.

What about when you can’t manage the basic stuff of life on your own anymore? When a bag of groceries is too heavy? When a flight of stairs looms Everest?

Ask you family for help? They’re busy. Maybe they can find a little time around Thanksgiving. Or New Year’s.

“But I need help today!” The silence is deafening.

Growing older has plenty of good, solid reasons for fear. Real issues of being left to the care of unfriendly strangers, unable to manage day-to-day tasks are more than a little scary. There’s nothing psychological about them.

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Everyone would rather not need help. Universally, people prefer self-sufficiency. When that’s no longer an option, the world has a frozen, dark look. It’s not your world any more.

There are boulders in the middle of your life. Immovable. Huge, heavy, solid. Waiting.

WHAT? – GARRY ARMSTRONG

This is a lengthy comment to a blog posted by the imminent eminent wordsmith known as Evil Squirrel.  Squirrel’s blog For whom the Beltones ... was a humorous look at the history of aids for the hearing-impaired and the advertising of the 1980s.

Squirrel, this is truly evil. Maybe even blatantly racist if I can find an angle. I love it! You’re yelling to the choir with this one.

garry and tom walpole TV

As you may know, I have needed hearing aids since I was a kid, back to the days when they were the small portable radios with a wire and earpiece. It was damned humiliating for a young guy.

As time went by, technology upgraded me to tiny, all in the ear aids. They were invisible on TV so it was great for me since I wore my aids all the time at work — except when I did live shots. Then, I had to replace one of my hearing aids with the IFB thingy which allowed everyone to talk directly into my head. Everyone could — and did — talk at the same time.

Sometimes there were two or three dozen people talking and shouting into my IFB as I calmly did my live reports. And smiled.

Often (simultaneously), the other hearing aid would pick up frequencies from nearby radio towers. I had a myriad TV people shouting into my IFB while Air Traffic Controllers yelled into my hearing aid. I calmly delivered the live reports. Then I went out for a few drinks.

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Marilyn actually saw and heard a tape of one of these live shots, The station had accidentally recorded the stuff coming in through the IFB instead of the sound track for the story. She was awed. How could I function during all the clamor? Looking back, I’m awed too. I’m an awesome guy. That’s why they paid me the big bucks (not).

I interviewed Eddie Albert when he was filming “Yes, Giorgio” in Boston. Eddie was sunbathing along the Charles River. He smiled when he caught a glimpse of my tiny hearing aids. Pulled his out for comparison. A lot of “WHAT?” went down that day.

Fast forward to the present, I have the current behind the ears model hearing aids. My hearing is getting worse.

Huh? Can you hear me now??”

Garry with Terriers - Dogs

Postscript:

I didn’t always wear my hearing aids on a regular basis. Back then, it was worse (much) than being called “four eyes”. One night changed my whole attitude.

My date had reached that critical point where you wonder if “it” will happen. The lady answered my query. I misheard her answer.

End of evening.

RETIREMENT IS SERIOUS BUSINESS

I stopped working more than five years ago. I was too sick to keep going and I was old enough so the market for my services was drying up.

I started getting disability almost 2 years after I was physically unable to work. It turned out my monthly disability check was less than a week’s pay as a working person. I tried intermittently for several years to find part-time work that might bring in a bit of money. So life wouldn’t be so difficult.

Nothing lasted long. More to the point, I didn’t last long. I hurt. I was exhausted. I worked more slowly than I did in the past. Finally, I gave up. I was 61.

96-Rockers-NK

Garry had stopped working too. There were a lots of adjustments to make. On the psychological side, we had to learn to be retired. The world is different when you don’t have a job to define your weeks and days. I had worked at home a lot over the years, so it was not as abrupt a shift for me as it was for Garry. Eventually we slipped comfortably into not-working.

The financial part was — continues to be — challenging. The mortgage had to be lowered or we’d lose the house. Somehow, we got it done. Both of us had no health insurance for more than a year. Me for more than two, during which interval, I nearly died. Because no one would repair me without insurance. Eventually, I lucked into a doctor and a hospital who cared more for my life than my lack of insurance. I’m alive to write this only because of them.

We kept cutting back and cutting back. Last spring, our outgo and income became equal. Exactly. Assuming nothing outside programmed expenses ever occurs, we have the same amount of money as month. Which is absurd. Life is full of expensive surprises. Cars break. Pipes leak. Wells go dry. Appliances wear out. Dogs get sick. Meanwhile, fixed incomes have less and less buying power as inflation eats away at them.

I got sick. A lot. Big time. One nearly dying event was apparently not enough for me. I had to repeat it a couple more times, to make sure I got it right. Then there was breast cancer. Two cancers, one for each breast. I thought, having got through that, I’d earned a reprieve. Sadly, life doesn’t work that way. Life doesn’t let you “pay it forward.”

This year, it was my heart. Five surgeries later, I’m back. Blogging my remodeled, rebuilt heart out.

The other day, I received an invitation from a well-known, quite prestigious website to become a contributing editor. This would require I write two posts a month, minimum. Really, they’d like at least one a week or more.

Serendipity is a personal blog. I write about my life, memories, experiences, thoughts. Occasionally, I put up an issue-oriented piece. The other site is more about issues and news. More impersonal, less anecdotal. A lot of politics. Government. Current events.

The point — for me — of taking on this other writing role would be to have a forum where I could post about different stuff, the stuff I avoid on Serendipity. The thing is, I’m not sure I want another forum. Or need one. Even though I’m flattered. It’s so hard to say “no” when the compliments are flying thick and fast.

Nonetheless, I take retirement seriously. I don’t work, don’t search for work. If I get a nibble (because my résumé is out there and headhunters find it), I have (finally) learned to say “no thank you.” My survival is predicated on not working. Not having deadlines. Keeping my anxiety level low. If I take it easy — low-key, low stress — I can have a pretty pleasant life. No money to spend, but otherwise nice enough. Do I want more responsibility? Can I handle it? I thought I had decided “yes,” but I find myself wavering.

These days, I take retirement seriously. As seriously as I ever took any job at which I worked for pay. It takes dedication to do retirement properly.

FIRMLY UNRESOLVED

To Be Resolved — We’re entering the final days of 2014 — how did you do on your New Year’s resolutions these past 11.75 months? Is there any leftover item to be carried over to 2015?


I have stuck to the letter, comma, and sub-clause of my 2014 resolution, which was to not make any resolutions. Despite that, I promised myself I would make every effort to live through the year. I would not give up.

We can’t control the outcome of multiple heart surgeries. Nor can we control the rate at which bones knit — or fail to knit. We can control some of the variables. Make sure we take medications, eat sensibly, get to appointments. Do what is within our power to help the body recover from the assault on it. But after that?

The rest is in the hands of destiny. God, if you believe in that. My job, for all of 2014, was to nudge destiny in my preferred direction, which is to say, keeping alive.

December 22, 2014. I am not where I hoped to be, but not so bad. My heart is doing pretty well. The new valve works. The redesign of the left ventricle and the arterial valve were successful. The pacemaker is pacing, My blood pressure is sometimes weird, but more or less normal.

My cut-in-half breast bone has not knitted. It grinds and grates. I can hear it when I move. It’s particularly unsettling at night as I shift in bed. The grinding of bone-on-bone is an ugly sound. I’m amazed at how many different activities affect ones breastbone. Who’d have guessed?

No one can predict when my chest will heal. The answer is “In its own good time.” Not very doctorly. In the movies and on TV, doctors have answers. They know. In the real world, doctors have a pretty good idea, based on experience, how a procedure, surgery, or treatment will play out. But patients are individuals, so while a doctor’s best estimate could be accurate for 70% of his or her patients, that leaves a lot of wild cards. Of which I am one.

At this time last year, I was not sure I’d be here to celebrate Christmas. I was facing a terrifying surgery that turned out to be four terrifying surgeries and a couple of other procedures … much more than even the surgeon expected.

As to the million dollar question. “Do you feel better than you did before all that surgery?”

That’s a hard one. Though I was kind of dying, I didn’t know it. I attributed breathing issues to asthma and mobility problems to progressive, crippling arthritis. I’m lucky I can walk. As soon as the calendar flips over, I’m off to get shots to see if the pain can be better controlled. From my perspective (as opposed to a doctor’s viewpoint) my main issue is finding ways to control pain.

The answer to “Do you feel better?” is — “Define better.” I don’t feel better, but I am better.

I breathe better, but don’t walk better. I hurt more than last year, but the internal workings are in better shape. The surgery didn’t address the stuff which was bothering me most.

My spine can’t be fixed.

My best choice is to learn to accommodate. Anyone with chronic, disabling medical problems knows what I mean. There’s no enemy to battle and conquer. Direct confrontation will not win the day. It will just leave me exhausted and defeated. I need to be cunning, wily, and sneaky. I have to stay patient, adaptable. Be creative. There might yet be a breakthrough in pain control.

I live in hope.

LIVING IN SILENCE

A while ago, I had the flu and my ears were blocked. One day, Garry removed his hearing aids and kept turning up the television until we could both hear it. 

“That,” he said, “Is my world. That’s how much I can hear.”

I have never forgotten. Which is good because it’s all too easy to forget when it’s not your problem.


Many people don’t consider hearing loss a “real” disability. Is it because it’s invisible? I can’t walk much, can’t lift, ride a horse or bend. I am usually in some kind of pain ranging from “barely noticeable” to “wow that hurts.” None of which are visible to a naked eye. I once had a woman in the post office lash into me because I had a handicapped pass and she didn’t think I looked handicapped. Years later, I’m still angry. How dare she set herself up to judge?

People make assumptions all the time about Garry. They assume if they call to him and he doesn’t answer, he’s a snob. Rude. Ignoring them. If I’m with him I take them aside, explain Garry cannot hear them.

“You need to make sure he sees you and knows you are talking to him,” I tell them. I consider it part of my job as his wife. It’s rough being deaf in a hearing world. Parties are the worst. With so many people talking at once , it is impossible for him to hear one voice.

Mostly I can hear. Most things. Not as well as I did when I was younger. Background noise is more intrusive and annoying than before, but I hear well enough for most purposes. I depend on my hearing to catch nuances, to interpret underlying meanings of what people say.

Garry used to be able — with hearing aids — to do that too. It was important in courtrooms, while interviewing people and of course, in relationships. It’s not only what someone says, but how he or she says it. Body language, facial expressions … it’s all part of the communications package. But his hearing is worse now and much of this ability to catch the subtler part of speech has been lost.

The silence of the woods after a heavy snow

The profound silence of the woods after a heavy snow

When the hearing part goes, other senses have to compensate — but nothing quite fills the gap.

I am forever asking Garry if he heard “it.” Sometimes “it” is me. He often behaves as if he heard me though he didn’t — but he thinks he did. Sometimes, he didn’t hear exactly what I said. Or notice I was speaking at all. It takes him a while to process sound, to put words in order and make them mean something. It isn’t instant, the way it is for someone with normal hearing. He has to pause and wait for his brain to catch up. Sometimes, he puts the puzzle together wrong because he heard only pieces and what he missed was important.

There’s also the “what?” factor. How many times can anyone say “excuse me, can you repeat that” before he/she feels like an idiot?

Human speech is not the whole story. There is music, soft and loud. The funny noise coming from the car’s engine, the scratching of a dog locked in the closet. Birds singing. A cry for help from a distance.

Garry can’t hear any of that. He could, years ago. So he misses it. He doesn’t hear the beep of a truck backing up. Or the sound of the water in our pipes which means someone’s using the shower. The little grinding noise of a hard drive going bad. Or an alarm ringing. The hum of the refrigerator.

All the little noises are lost to Garry.

What does silence sound like? When you hear only the very loudest noises, but none of the soft, little sounds? The explosion, but not a murmur? To be in that silence — always — is a different world.

– – – – –

* Answer: Three.You can ask someone to repeat something 3 times. After that you are too embarrassed to try again. This is true for everyone, not just people with hearing problems. We all encounter accents we don’t get, mumblers, and people who speak too fast or too softly.

WHY AREN’T YOU DEAD YET?

Why aren’t you dead yet?

If you’re over 65 and/or on Medicare, or poor on Medicaid, that’s the message you’re getting.

Out-of-pocket costs of Medicare have been going up annually, with ever-higher deductibles and premiums and a massive doughnut hole in prescription coverage that like the energizer bunny just keeps going and going and going. Many of the most fundamental, critical medications aren’t covered at all — emergency and other inhalers for asthma sufferers, nitroglycerin, newer antibiotics. Out-of-pockets costs are terrifying.

Coffin

It doesn’t matter that you literally can’t live without your medications. Survival is your problem. Your health care providers, including your doctors, don’t care.

Ever since I turned 65, it’s been a downhill slide into worse medical care. As long as I was on MassHealth (Massachusetts’ Medicaid), I was okay. Medication was affordable. If I was sick, I got care. Lucky I had cancer while I was covered by MassHealth. Otherwise, I’d be dead.

The day I turned 65, I was dumped from MassHealth. I vainly hoped I’d be protected by my disabled status. I had been on Social Security disability for years. Officially disabled, I was thus entitled to MassHealth.

No problem getting around that. Social Security reclassified me as just old, not disabled. They switched me to standard Social Security. I get the same money, but without the protection. They also changed the poverty line so I no longer qualify for the extra help I was getting for medications.

Cost-of-care

Apparently when you’re over 65, you need a lot less money to live on. Pity no one told my mortgage company or other creditors. Or the drug companies. When you hit 65, you are healed of all existing disabilities and can can live on a third of the money you needed before. Poverty — when you are 65 or older — is set to levels so low you couldn’t afford a refrigerator crate.

All of this occurred right after the second anniversary of the two tumors which cost me both breasts, at which point I discovered I needed major heart repair. Without MassHealth, I needed a new medical plan and had switched to a Medicare HMO. At the time, there was only one in Worcester County. Fallon was (and remains) awful with practically no oncologists and they didn’t include the only dedicated cancer facility in central Massachusetts.

So, for a year, under Fallon, I didn’t see an oncologist. I made appointments, but they were consistently cancelled because the guy had meetings. Not emergencies. Meetings. By the end of 2013, facing heart surgery and needing a real oncologist, I switched to one of Blue Cross’s Medicare PPO Advantage plans. Simultaneously, Partners Group, the umbrella organization for all the doctors I’d been using withdrew from the Medicare and MassHealth HMO programs. Partners Group chose to not serve the old and poor. Not profitable.

At the beginning of 2013, I had no doctors. My PCP, gastroenterologist, psychiatrist … my entire support network … dissolved. In theory, I could continue to go to them. It was, after all a PPO … but it turns out just because you can go to a doctor doesn’t mean your insurance will pay the bills.

I needed new doctors and I don’t have them.

I’ve had four different kinds of heart surgery and I don’t have a cardiologist. No one is monitoring my blood pressure or medications.

Essentially, I’ve got no medical services. I’m taking the medications I was taking before surgery because I don’t know what else to do. I’m doing my best to hook up with doctors, but I’m in limbo and have been since before the surgery.

I’m angry. I’m trying hard to stay calm, but inside, I’m terribly angry. I’m getting the message loud and clear.

“Why don’t you just die already? Stop using up valuable resources we could use for younger people who deserve to live.”

I’ve outlived my usefulness. So how come I’m not dead yet?

When did we become this mean-spirited country with medical organizations which would rather close down than provide care to most vulnerable citizens? How did we come to this? Who are we?

I know. I get it. Just die already.

IF YOU CAN’T FIX IT, COMFY FURNITURE HELPS

Ouch! That really hurts! My back’s been a mess since I was a kid. Fell off one horse too many. Rebuilt in 1967 — fusion and laminectomy using saws, drills and chisels — long before micro surgery and instrumentation. I’m not special because I deal with pain. I’ve got plenty of company. Sometimes, too much company. We’re all squished together in an over-crowded lifeboat.

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Me at 20, a year post spinal fusion.

I’ve had a lot of problems with my back over the years. The fusion, made from bone paste taken from my hip, began to disintegrate about 25 years ago. Nature kindly replaced it with a sheathing of arthritic calcification. That’s not such a bad thing because without the arthritis, I’d (literally) fall apart.

Looking at pictures of me in years gone by, I got to wondering how life landed me here. How did the bright-eyed woman become this creaking achy old thing fighting to keep moving under her own power?

Who is this person?

She doesn’t look or act like me. I can vouch for this because I used to be her, but now I am not at all sure who I am or whose body this is. Maybe while I slept, someone gave me an impostor body. I would jump right on the impostor theory except being me is not something a sane person would want. If I had a say in the matter, I would be healthier, wealthier and younger. Some other body, but I’d keep the brain. I like that part of me.

Life changes, sometimes in a split second.

Remember Christopher Reeve? One minute, he was a big, handsome, strapping movie star. A dreadful split second later, he was someone else.

My down hill slide occurred at the pace at which bones and joints calcify. I broke my back when I was a kid. I was reconstructed when I was 19. For the next 35 years, I refused to pay any attention to my spine. I was not going to be disabled. Not me. It was mind over matter and I am strong.

Turns out, mind over matter only takes you so far. Seven years ago, I began to have trouble walking. My balance became erratic. I lost sensation in my feet and miscellaneous reflexes disappeared. (I didn’t yet know about the heart problems which no doubt contributed.)

I went to doctors, orthopedic hot shots. All of them said I need a new spinal fusion, the old one having fallen apart over the long years. Diagnosis: Horrible spine. Solution: New fusion in which I get screwed together using metal rods. After surgery, I would be in even more pain than now, but my spine would be stable. Say what? This surgery would be the 21st century version of the surgery I had in 1967.

I said Hell no and took my case to the top spine guy in Boston, the Supreme Court of spinal diagnosis. He said I don’t need surgery. More to the point, he said the surgery wouldn’t solve my problems.

This time I heard: “Your back has got you through this far, it’ll take you the rest of the way. Pain control, gentle exercise, and recognize your limits. Don’t do anything stupid.” Like fall off a horse? Lift heavy packages?

selfie 23

There are a lot of members of the back pain club. After you join the club, you usually get a lifetime membership. I finally discovered I have a problem I can’t fix. No amount of persistence, research, medical attention or cleverness is going to make it go away. So I’ve designed the world to make my back happy. We have a back-friendly home. From our adjustable bed, to the reclining sofa, our place is kind to spines.

There’s no moral to this story. It’s just life. If you don’t die young, odds are you hurt. The years roll on, pain gets worse.

I’ve had to accept reality but I don’t have to like it. Sooner or later we all face an intractable problem. Or several. It’s a nasty shock, especially if you’ve always believed you are unstoppable. When you hit that wall, I recommend buying very comfortable furniture.

LIVING IN SILENCE

A while ago, I had the flu and my ears were blocked. One day, Garry took out his hearing aids and kept turning up the television until we could both hear it. “That,” he said, “Is my world. That’s how much I can hear.” I have never forgotten. Which is good because it’s all too easy to forget when it’s not your problem.

Many people don’t think of hearing loss as a “real” disability. Is it because it’s invisible? I can’t walk much, can’t lift, ride a horse or bend and am usually in some kind of pain ranging from “barely noticeable” to “wow that hurts.” None of which are visible to a naked eye. I once had a woman in the post office lash into me because I had a handicapped pass and she didn’t think I looked handicapped. Years later, I’m still angry. How dare she set herself up to judge?

People make assumptions all the time about Garry. They assume if they call to him and he doesn’t answer, he’s a snob. Rude. Ignoring them. If I’m with him I take them aside, explain Garry cannot hear them. “You need to make sure he sees you and knows you are talking to him,” I tell them. I consider it part of my job as his wife. It’s rough out there in a hearing world. Parties are the worst. When so many people talking at once , it becomes impossible for him to hear a single voice.

Mostly I can hear. Most things. Not as well as I did when I was younger. Background noise is more intrusive and annoying than it was. But I hear well enough for most purposes. I depend on my hearing to catch nuances, to interpret underlying meanings of what people say.

Garry used to be able — with hearing aids — to do that too. It was important in courtrooms and while interviewing people and of course, in relationships. It’s not only what someone says, but how he or she says it. Body language, facial expressions … it’s all part of the communications package. But his hearing is worse now and much of this ability to catch the subtler part of speech is gone.

The silence of the woods after a heavy snow

The profound silence of the woods after a heavy snow

When the hearing part goes, other senses have to compensate — but nothing entirely fills the gap.

I am forever asking Garry if he heard “it.” Sometimes “it” is me. He often behaves as if he heard me though he didn’t — but he thinks he did. Sometimes, he didn’t hear exactly what I said or notice I was speaking. It takes him a while to process sound, to put words in order and make them mean something. It isn’t instant, the way it is for someone with normal hearing. He has to pause and wait for his brain to catch up Sometimes, he puts the puzzle together wrong because he heard only pieces and what he missed was critical.

There’s also the “what?” factor. How many times can anyone say “excuse me, can you repeat that” before he/she feels like an idiot?

Human speech is not the whole story. There is music, soft and loud. The funny noise coming from the car’s engine, the scratching of a dog locked in the closet. Birds singing or a cry for help from down the hall. Garry can’t hear any of that. Once upon a time, he could and he misses it. He doesn’t hear the beep of a truck backing up. Or the sound of the water in our pipes that means someone’s using the shower. The little grinding noise of a hard drive going bad or an alarm ringing. The hum of the refrigerator. All the little noises are lost to Garry.

What does silence sound like? When you hear only the very loudest noises, but none of the soft sweet sounds? The explosion, but never a murmur? To be in that silence — always — is a different world.

– – – – –

* Answer: Three.You can ask someone to repeat something 3 times. After that you are too embarrassed to try again. This is true for everyone, not just people with hearing problems. We all encounter accents we don’t get, mumblers, and people who speak too fast or too softly.

AN OVER-CROWDED LIFEBOAT

Ouch! That really hurts! My back’s been a mess since I was a kid. Fell off one horse too many. Rebuilt in 1967 — fusion and laminectomy using saws and chisels — long before micro surgery and instrumentation. I’m not special because I deal with pain. I’ve got plenty of company. It’s just sometimes, I feel like I’ve got too much company. We’re all squished together in an over-crowded lifeboat. Sinking. Together.

96-Me-Young-HPCR-1

Me at 20, a year post spinal fusion.

I’ve had a lot of problems with my back over the years. The fusion, which was bone paste made from a piece of my hip, began to disintegrate about 25 years ago, to be replaced by a sheathing of arthritic calcification. That’s not such a bad thing because without the arthritis, I’d (literally) fall apart.

Looking at pictures of me in years gone by, I got to wondering how the long winding road of life landed me here. How did the bright-eyed woman become this creaking achy old thing fighting to keep moving under her own power?

Who is this person?

She doesn’t look or act like me. I can vouch for this because I used to be her, but now I am not at all sure who I am or whose body this is. While I slept, someone slipped in an imposter body. I would jump right on the imposter theory except being me is not something any sane person would want. If I had a say in the matter, I would be healthier, wealthier and younger. Some other body, but I’d keep the brain. I like that piece of me.

Life changes, sometimes in a split seconds.

stages of spondylolythesis

I’m grade 4, considered a miracle I can walk. It’s only part of the problem. That’s the way it usually works. You don’t have a single problem, you have a basket of related problems.

Remember Christopher Reeve? One minute, he was a big, handsome, strapping movie star. A dreadful split second later, he was someone else.

My down hill slide occurred at the pace at which bones and joints calcify. I broke my back when I was a kid. I was reconstructed when I was 19. For the next 35 years, I refused to pay any attention to my spine. I was not going to be disabled. Not me. It was mind over matter and I am strong.

Turns out, mind over matter only takes you so far. Seven years ago, I began to have trouble walking. My balance became erratic. I lost sensation in my feet and miscellaneous reflexes disappeared. I went to doctors, orthopedic hot shots. All of them said I need a new spinal fusion, the old one having fallen apart over the long years. Diagnosis: Horrible spine. Solution: New fusion in which I get screwed together using metal rods. After surgery, I would be in even more pain than now, but my spine would be stable. Say what? This surgery would be the 21st century version of the surgery I had in 1967.

I said Hell no and took my case to the top spine guy in Boston, the Supreme Court of spinal diagnosis.

He said I don’t need surgery. More to the point, he said the surgery wouldn’t solve my problems. Now I heard: “Your back has got you through this far, it’ll take you the rest of the way. Pain control, gentle exercise, and recognize your limits. Don’t do anything stupid.” Like fall off a horse? Lift heavy packages?

There are a lot of members of the back pain club. After you join the club, you usually get a lifetime membership. I finally discovered I have a problem I can’t fix. No amount of persistence, research, medical attention or cleverness is going to make it go away. So I’ve designed the world to make my back happy. We have a back-friendly home. From our adjustable bed, to the reclining sofa, our place is kind to spines.

75-GoodNight-CR-66

There’s no moral to this story. It’s just life. If you don’t die young, odds are you hurt. The years roll on, pain gets worse.

I’ve had to accept reality but I don’t have to like it. Sooner or later we all face an intractable problem. Or several. It’s a nasty shock, especially if you’ve always believed you are unstoppable.

When you hit that wall, I recommend very comfortable furniture.

WHAT?

There is a certain coziness when a couple is sick together. I cough, he says “What??” Because he’s deaf anyhow, but with his ears totally blocked from this thing we have, he can’t hear much of anything. I bought him wireless headphones for both TVs, the living room and the bedroom. With them turned up high, he can hear everything. Not just the loud parts, but the background sounds. Crickets chirping, birds singing. An expensive gift, but I know how much he missed hearing.

Sennheiser RS120 On-Ear 926MHz Wireless RF Headphones with Charging Cradle runs $90 on Amazon. If you love someone who has a hearing loss, this is magical. Sennheiser — the name in earphones — makes more expensive versions, These are so good, it’s hard to imagine how much better they could be. You can get extra head sets in case you want to listen together.

sennheiserNow for the story. We were watching Jimmy Fallon. His guest was Harrison Ford. I noticed there was something shiny in Harrison’s ear, so I turned to Garry and asked him if he thought Harrison was wearing aids, an earpiece … or an earring.

Garry looked at me blankly and said “What?”

I collapsed. I couldn’t stop laughing. I was laughing and wheezing so hard, Garry was afraid I would hurt myself. Every time I tried to explain what I’d said, the hysterical  laughter overcame me. I was in real pain from coughing and laughing so hard. Tears were streaming from my eyes. I can’t remember the last time I laughed so hard. It was cathartic.

Garry said he was glad he could make me laugh. Me too. Being able to laugh with one’s partner brings you closer.We had a Moment.

The earphones were an investment in making someone happy. Sometimes, watching a movie with a headset, he realizes he has never heard the full soundtrack before. It brings tears to his eyes. Mine, too on his behalf.

CLOSE TO THE TREE

Mom-May1944It occurred to me one day I needed to see my spine specialist. When you deal with chronic pain, you learn to ignore it most of the time. Unless you want to wind up addicted to pain killers, it’s the only option. It’s not bravery. It’s a practical decision. Do I want to keep participating in life? Then I have to deal with what I have to deal with. That’s the way it goes.

Long time ago, I was doing my mother’s hair. I liked fixing her hair. It was easy to style, thick, silver and just a bit wavy. I asked her to turn her head to the right, and she did. When I asked her to turn the other way, she said “I can’t.”

“You can’t? Why not?”

“Because my head won’t turn that way.”

That seemed a curious answer. “What do you mean by that?”

“My neck is stiff.”

“Um, mom? How long has it been like this?”

She thought for a while. “Fifteen years? Something like that.”

That stopped me. Fifteen years? “Have you seen anyone about it?”

“No,” she said. “I figured I was just getting old.”

At the time, I thought her statement was bizarre. It turned out she had treatable but advanced tendonitis and it got better. She hated doctors.

Time marched on. I’m older than my mother was then. I totally relate to her response. When I called the doctor for an appointment, I discovered the last time I saw him was more than six years ago. To be fair, I’ve had a few medical crises since then and I got distracted. Besides, I know what’s wrong with my back. It isn’t going to kill me. I’ve lived with it most of my life. I’m used to it and do my best to ignore it.

Recently, though I’m having trouble walking, even on flat surfaces and going up and down stairs is especially difficult. It crossed my mind there might be something he could do — some medical magic — to improve me without major surgery. I already know surgery isn’t an option.

My doctor is wonderful. The best. The only doctor who can look at my spine, not gasp with horror and immediately decide I need to be rebuilt with screws, pins, and bolts. He’s a minimalist, medically speaking. I like that.

I made an appointment and got lucky because there was a cancellation. It usually takes five or six months to get to see him, but I only had to wait a few weeks. He’s the king of spines in Boston, maybe in the country. I would have willingly waited six months if I had to. Of course, as soon as I made the appointment, I had to make another appointment because I need new films of my spine. I also haven’t had a CT scan or MRI in six years and he isn’t going to be able to do much without new films.

I wondered how come I hadn’t processed the fact I can’t walk normally? I suppose I wasn’t paying attention. I was busy ignoring pain.

I was being my mother. She taught me to be a soldier. She didn’t use Novocaine when she got her teeth worked on. I asked her why. She said “Pain is good for your character.”

Tree Silhouette in B & W

She meant it. I grew up believing giving in to pain was a weakness. To a degree it serves me well, but sometimes it’s dangerous. If you ignore the wrong stuff, it can kill you. One needs to find balance, but it isn’t so easy.

Watching a documentary on Ethel Kennedy reminded me of my mother, minus all the money. Mom was an athlete. I’m sure she wondered how she wound up with such a klutzy daughter. She had been a good tennis player. She rode horses, she played ice hockey. She went bob sledding. She painted, sculpted, designed and made her own clothing. She also never got past seventh grade, so she made up for it by reading everything. She had a truly voracious appetite for life and knowledge.

After a radical mastectomy, she couldn’t play tennis anymore, so she played a ferocious game of ping-pong. She played savagely. She served so hard it was more like a bullet than a ping-pong ball. As a family, we vacationed in dinky little resorts in the Catskills where there was no entertainment. The one thing they always had was a ping-pong table. So I played against my mother.

I'm in the middle, Mom and my sister Ann are on the right. Code Red.

I’m in the middle, Mom and my sister Ann are on the right. Code Red.

She didn’t believe in any of that “let the kid win” stuff. She was a competitor. You won or lost. Trying hard was irrelevant because she expected nothing less. She slaughtered me. As I got older, I played better but she always beat me. She told me she was giving me an advantage by playing with her left hand. I knew she wrote with her right hand, so I assumed she was a rightie. Until the day my aunt told me she had always played tennis with her left hand. My mother was psyching me out. Her own daughter.

I never beat her, but I beat everyone else.

She passed me her determination to never give up, to do everything I could as well as I could. Later in life, I realized I didn’t always have to be the best. Playing a game for fun is worth something too. Another lesson learned a bit late.

The older I get, the more I remind me of my mother.

So I went to my doctor and he told me there was nothing he could do except reduce the pain. Temporarily. No fix. No drug. It is what it is. Progressive. Irreversible. I sighed and accepted it. I had hoped there was something he could do. Not to be.

We all miss stuff. Some of it intentionally, more accidentally. Sometimes, I miss important something because I’m busy ignoring something else.

I am an apple. Mom was my tree. I fell, but not far.