Telling the Children

Jed writes that his two young children lose patience with his physical inability to keep up with them, specifically their speed going through toys in the basement.   Kids are wonderfully unaware of our struggles.  I think we have to do all we can to keep it that way, to preserve their childhoods for as long as possible.  They should live carefree and play their hearts out.

That raises the question, when and what do we tell them about a sick parent?  Ask five shrinks and you will get six answers.  There are no pat answers, no roadmaps for sale at your local gas station.  I think parents intuitively know when it is time to talk.

For us, the moment arrived when the kids saw me fall down the stairs and land on my head.  Ben, our oldest, waited until he was in bed with the lights out to ask blunt questions.  That was the moment of truth that shook hard truths from the tree.  Ben was only five, so this moment came more than twenty years ago.

We decided that this had to be the start of an era of openness.  We quickly came to believe that the only way to make children secure in their own homes was to open lines of communication and simply tell the truth.  There would be no drama, no grim faces.  We all know that kids are the smartest ones in the house.  They can smell trouble.

When cancer showed up at my door, we just sat them down and told them the facts.

Gabe, our middle guy, asked two questions.  Are you going to die?  Do we still get our Christmas and Hanukah presents?  He had his priorities straight.  We had showed calm.  Kids take their cues from parents.  They saw that we were not freaked out and adopted the same attitude.  We had not presented the situation as nothing to worry about, but let them know we thought everything would be okay.

Our children are grown and gone now, living in various places in the world.  We give them the news when there is a health issue or anything else.  When the three of them are home for a visit, together or one at a time, they watch out for me when we do anything outdoors.  It has become second nature.  I would like to think they see others in need of assistance, on the street or in other public places.  Helping an elderly person cross the street should be automatic.

So, Jed, give it time.  Then teach.

 

 

16

The Real Predator

I focus on a wheelchair in my mind’s eye.  The chair is slowly rolling toward me.  It is my personal Twilight Zone. I hear a wizened voice saying, sit down, dearie.  The scene provokes a gripping horror.   I cannot say I obsess on it, but the vision in the back of my mind is moving forward, apace with the wheelchair.  In the dark of dawn, I am awake, just thinking, imagining.  My grandmother and father depended on these chairs at the end.  My imaginary family photo has me in the same  metal device.  The image stays with me but under wraps.

I awaken and move downstairs.  I cannot see the glass next  to the sink and knock it onto the floor, shattering it and spilling whatever day old refreshment was in it.  I am back to reality.  I hobble outdoors and fetch the Times.  I have conveniently forgotten I can barely make out the headlines over articles on the front page and little of the stories themselves.  “Be patient,” the neuro-ophthalmologist tells me.  “It should get better.”  That is not my history.

I sit at the computer for hours, face pressed against the screen.  That contorted position allows me to see what I am writing.  My back hurts constantly, but it is worth it.  I am a writer by default.  For twenty-five years I toiled in the vineyards of network news.  Then the fine wine was gone and I became a refugee on the printed page.  Now this is what I do, and I wonder how long I will be able to go on.

I do not allow myself to contemplate sightlessness.  My imagination cannot go there.  Missing eyesight is likely to become functional blindness, the limited ability to appreciate light and dark, to see shapes and movement.  Words may be forever lost to me.  I may become more dependent on others, an especially horrible prospect.  Now my only hiding place is sleep.  The chairs appear only in the fog of waking up.

We are visually selective in what we see on the silver screens in our minds.  I own the theater and control the projector.  For now.  All I fear stays off the movie schedule.  How long I am able to remain in charge of my theater depends on the pace of worst-case dramas finally finding their place on the nighttime program.

Sightlessness is my secret nightmare, a secret even to myself.  There is a reason I have not written of the issue that has followed me for many decades.  The genie must remain trapped in the bottle through which I cannot see.  I cannot bear to know the future.

 

Twitter rmcjourneyman

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No Kvetching Allowed

 

Kvetch.  Kvetch.   Kvetch.  Not you.  Me.    What a sorry statement from one who felt it so important to face life’s trials with grace.    Handle it.  Learn to live with setbacks, and keep moving in the right direction.  There was something stoic about my silence.  I was proud of that.  To kvetch is an old Yiddish term for constant complaining.  There is a large wad of bubblegum stuck to the soles of my shoes.  I am stuck on that word.

Complaining about life’s miseries is not an attractive habit.  I tried not to venture across that treacherous terrain.  I figured complaining is like crack, not a habit anyone should find appealing.  I have a few blood clots still dissolving in my body.  The amazing disintegrating man continues his messy struggle with psoriasis.  I could redo the roof with my shingles.  And all of the above is kicking in MS madness.  Friends tell me I have a right to complain.

No I don’t.

Well, yes.  Actually, I have the legal right to feel sorry for myself.  Kvetching is protected speech.  But how pointless.  Tedious.  I used to be a role model for my family.  Now I think they want me to write when I find work.  My clothes are caught on the barbed wire of bellyaching.  The time has come for a new strategy.

Chronic conditions come at us slowly.    They cannot be stopped, but we sort of know what to expect.  A pulmonary embolism strikes like lightning.  As with heart attacks and cerebral hemorrhages, a clot can drop you.  That came close with me.  So put it aside.  I did almost drop my teeth at the whole thing, but nothing  actually fell to the ground.  So stop obsessing.  It s over, and you have learned a lot about preventing future occurrences.

Which brings me to my psoriasis.  I am in my fifth month of itching.  Pretty freaking annoying, but survivable.  The medication did cause significant hair loss.  I had to go with a buzz cut.  My hair was ridiculously long anyway.  I came of age in the sixties and was my hair.  For goodness sake.  Get over it.  It is not 1968 anymore.  Besides, everyone is saying they love the haircut.  Go figure.

Then there is the shingles.  Are the shingles?  We all live in fear of that one.  Mine seems to be a relatively mild case.  Last but not least, the very annoying, slightly scary scene of the MS rearing its ugly head.  There is nothing new here.  How many times has that happened before?  Sometimes I make it back to the starting line, wherever that happens to be at the moment.  I may lose ground, but let’s not assume anything for the moment.

Well, what have we here?  An armature lawyer whose entire case has just been thrown out of court.  So, cool it, and give everyone around you a break.  You were born a curmudgeon, and that does not have to change.  Just do all a favor and pull up the shades to let the darkness out.  And smile.  You are cute when you smile.  Wait a minute.  No, I am not.

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Doctored to Death

That important Tuesday meeting had to be canceled.   I had to see the ophthalmologist who was going to perform space age surgery to remove steroid-induced cataracts from an eye.  Years of steroid use treating MS flare-ups had made a rendezvous with the laser inevitable.

Can we move the meeting to Thursday?  Sorry I can’t.  I am reviewing the MRI of my lower spine with an orthopedic surgeon to decide what to do about the stenosis and extreme pain I deal with every day.  I just can’t take the pain much longer.  Forget lunch today.  Gotta see my neurologist who then wants me to be examined by a urologist.  Then we will talk about physical therapy.

One sign of sickness is endlessly going to doctors when we need to be working.  Another is when we talk more about our ailments than politics or baseball  or our children.  Then there is Coumadin, my newest drug addiction.  When you are on that blood thinner, you are getting old.  No offense. I am on it, too.

Growing old may beat the alternative, but it is not a happy condition.  Feeling your age? Better see a specialist.  Too often, I find myself dwelling on my difficulties and pondering pain.  Thin lines separate emotions.  Spending a life seeing doctors will make anyone feel old.  When your wife  yells for you  to come inside, that someone from Medicare is on the phone, age isn’t creeping up on you.  It is galloping.  And, of course, that means more doctors.

I feel doctored to death.  That condition makes me regard myself more as sick than old.  Feeling old is in your head.  Constantly feeling  sick is in your face.  In Strong at the Broken Places, I spent days interviewing Ben Cumbo, a young African American college student living with muscular dystrophy.  I asked Ben what part of his identity defined him most, being male. Black, or sick.  I had gotten to know his family and was sure the young man would say being black.

Being sick, he answered immediately.

Seeing a parade of doctors is not like seeing a July fourth parade.  We are not on the sidelines but in the middle of the action.  We are sick or we would not be there.  I once told my friend, the orthopedic surgeon, during the examination of a knee, that  I felt doctored to death.  “I’m sure,” he replied.  “But what are you going to do?”

Excellent question. We can’t live with them or without them.  I am sick of the whole deal, sick, which means I need a doctor or two.  I have an internist, a neurologist, an ophthalmologist and, of course, a neuro-ophthalmologist, various surgeons, a multitude of dermatologists, a new pulmonologist, a gastroenterologist, and now I am interviewing live-in psychiatrists.  And that is just for starters.

 

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So long, Barbara

I wandered through the drizzle, down to an ABC studio to watch Barbara Walters’ final live broadcast on The View.  The show was boisterous, funny and moving.  All the former co-hosts were there.  They had not changed one bit.  What became apparent very quickly was just how much that octogenarian (her age is a moving target) accomplished in her long career.  Walters was a pioneer, doing interviews only men used to do and cracking broadcasting’s glass ceiling, presumably with her bare hands.

Meredith and Barbara were a team.  They were usually serious, frequently funny. Meredith loved having our kids drop in for goofy, guest appearances.  I think that is one reason each is so self-assured.  The View was a family hangout.  I hung back for years, resisting producer telephone calls to appear on the show.  I would not go on for what I deemed no particular reason, except to be Meredith’s husband.  “Why are you here?”  I’m Meredith’s husband.

My attitude changed when I had a book to sell.  No fool, I.  Barbara was very close to opera great, Beverly Sills.  Beverly’s daughter has MS, and I knew Beverly from  MS Society events.  She wrote a blurb on the back cover of Blindsided.  Barbara then read the book and did a 20/20 program on it.  Barbara became interested in MS, and hosted some events.  She messengered the book to Don Imus, simply suggesting he read it.  She was very generous to me.

Barbara Walters is a force to be reckoned with.  I do not think we have seen the last of her.  Beverly Sils is gone now.  Meredith and I are out of sight and presumably out of mind now.  We have to come up with a way to lure Barbara back into the MS tent.

 

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Who is Angry at Whom?

There must be anger in the land of the limited.  My recent posts  suggested that some and only some people  relate to the disabled in a patronizing manner.  Then I went a step farther, writing that  some in the population of the chronically healthy are just plain cruel.   That lit a fuse.

I do believe there are a lot of jerks out there.  But let me be the first to admit that too often I keep my finger on the trigger, and occasionally the itching gets to me.  I believe I am not alone.  One reaction to the last post:  “It’s the fighting stance that really sucks,” Christopher writes. “Why is (almost) everyone out in the world so combative… so, contentious? It becomes really tiresome, and so difficult to ignore after a while. It’s like there is a war going on and we’ve all been drafted in absentia. Reluctantly.”

Perception becomes truth with all of us.  Anecdotes have come flying my way, many suggesting that a chunk of the population has imposed a state of siege on those of us on canes or in wheelchairs.  A physician friend accuses me of overstating the problem.  I had long suggested that many folks parking their SUVs in our safe spaces are insensitive and angry.  I react, and it occurs to me that maybe I am an angry person, too.

What about you?

I do know I am an angry person.  Ask anyone in my family.  My limitations get to me.  Arms and legs, hands and fingers fail me.  Gaps in my mind run deep and trip me up.  Loss of memory taunts me.  I spend too much of my life on edge, though that does not mean I will go postal anytime soon.  But the pot is simmering, ,and I try hard to keep a lid on.

We are different people, hanging out on the same battlefield.  When others act or speak with cruelty, when people say and do ignorant things, I am amazed we do not react volcanically.  All of your horror stories recount measured reactions, though I have to believe the pot boils.  But you do it gracefully and show dignity.  You are amazing.

Maybe it’s just me with the anger issues.  If I am pissed , probably I will over react.

When you observe behavior that offends you but is targeted at someone else, what is your response?  I see cars parking in our spaces and get mad., even if we are not parking.  I am not defending my own attitude, but maybe we speak in tones that do not  convey urgency.  Or anger.  Turning up the heat may not be such a bad idea.

 

I am dropping the subject now before too many of you get mad at me.

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Innocence and Evil

I have consistently suggested that the insensitive remarks we get in public places as we lean on canes or travel in wheelchairs are benign, that the person issuing the ignorance is wrongheaded but not malicious.  I did believe that.  The responses to my last post are giving me pause.  Maybe there is more to this story than meets the eye.

Kim shared horror stories about a recent outing to  Disney World- you know, the Magic Kingdom.   “My family and I were boarding a boat back to our hotel. My husband pushed me to the entry point, I got out and walked to my seat so that the wheelchair didn’t take up too much room, as there were many patrons waiting to board. Another passenger, proceeded to curse me out, even saying she should have just tripped that b****”

Ignorance is mostly innocent.  That remark was malevolent, dark and evil.  And that was just one of Kim’s stories.  I think there is a lot of anger loose in the land.  In so many ways, we are not in control of our own lives.  What institutions are more hated than banks and credit companies, airlines and, of course, the phone company?  And we compete with each other, strangers in the strange land of searching for jobs.

Even though the Supreme Court is hard at work, dismantling every program they can find to lift the disadvantaged, people think that certain populations, including the disabled, have a leg up on them.  Okay.  Not well phrased.  Public seething is everywhere.  Road rage rides every highway.  Women never have been more vulnerable.  Anti-Semitism does not seem to fade into the distant past.  Racism is still alive and well.  And you, you in the wheelchair.  Think you are special?

This is like kicking a dog.  Pick on the most vulnerable.

42

Them, not You

I walked into the house of worship.  Meredith was parking the car.  The place was crowded, the service underway.  I was a little unsteady, leaning heavily on my cane.  An usher stood a short distance from me and kept looking my way.  I looked back at her, thinking perhaps she would locate two seats and guide me there.  Meredith seemed to be having trouble finding a space.  My knees were shaking slightly by the time she walked in.

The usher hurried over, asking, where would he like to sit?  Our eyes did not meet nor did we.  She just looked away as she found us two seats together.  I held my tongue.  This was a house of God, after all, though a silent voice suggested this was an appropriate place for raising questions about how we treat each other.

Situations such as this have been raised in Journey Man recently.  From Amy:   “When I’m out in the world, people talk to the person I’m with, not me. At any time, something could happen that means I need a stranger’s help. I could go on.  I’m still learning how not to let it all mangle my ego. I’m also still learning how to laugh at myself. A red wheelchair helps.”

I wonder if Amy is serious about the color of her chair.  That would be pretty cool.  What is very uncool is the way people in wheelchairs are treated by the chronically healthy.  They are not sitting by choice.  I use a wheelchair at airports or other venues that require traveling a distance.  Something happens to my psyche as I ease myself into that chair.  I want to be invisible, which is exactly what happens.  People do not see us.  They just see the wheelchair.  We are extensions of those devices.

I never get used to Skycaps letting me sit, pointed away from everyone else in our party.  I am isolated, unable to hear what is being said.  Once, a Skycap at JFK kept us waiting at an arriving plane, emptying fast.  When he arrived he said nothing, pushing the chair up the jet way  We merged into the passenger flow and abruptly stopped.  The guy simply walked away, leaving us stranded. We stole his chair and went on our way.

We are only baggage, after all.

I learned that at Disney World, as attendants looked through me, only addressing Meredith.  I had become, he.  Even those of us who must lean on canes are objectified.  “I have three canes here, the Amtrak agent yelled into his walkie-talkie, as a crowd lined up at the gate.  I went to hand her my cane.  I told that story on Imus in the Morning. An Amtrak executive freaked out and tracked me down, falling all over himself with apologies.  After the fact doesn’t cut it.

We are not going to change American discomfort with us.  Put Indiana Jones in a wheelchair and let’s see what happens at the box office.  Illness and disability in a culture that celebrates physical perfection are not in fashion.  Surprise.  Just do not ever, ever, make the mistake of believing this is about you.  It is not.  It is all about others who have not figured out they may fill your shoes someday, sitting or standing.

32

Frail

An Unholy alliance comes together in my seemingly endless war with MS.  This time, the pulmonary embolism did a number on me.  Trauma to the body, even surgery, kicks in the MS.  That happened with a lumbar fusion and bouts of  colon cancer and now my blood clot in my lungs.  It feels like a terrible tango with an unyielding enemy.  I have been trying to hide from the facts, but recently when I could not carry a cup of coffee ten feet from sink to chair and had to put it on the floor and slide it, my frailty was tough to deny.

This is not new, just worse.  “Gabe, we’re home, I had yelled to our middle kid a while back, as we walked in the door.  I repeated the call.  Silence.  “Gabe, we’re home,” Meredith announced loudly.  “Hey mom, he replied.  Is Dad with you?”  I had not been able to lift my voice enough to be heard, an unwanted reminder of my weakened body.

We headed into a revolving door. Meredith went first.   She entered the store and did not think to  look back.  The revolving door stopped, trapping me.  I could not push it.  People were waiting to get into the door, saw my cane and just waited.  The stalemate continued until I summoned the strength to conclude the circular journey.        

I cannot get used to the humiliation. 

Progressive diseases do progress.  Recently we ran an errand.  I always ride shotgun.  We parked, and Meredith went into a shop.  I suddenly decided to join her but could not open my door.   I threw my weight against it, but the door would swing closed before I could get even a leg out. So I sat.

Once, I could not drag my right leg into a cab before the sliding door closed on it, and a nice young woman, waiting for a bus, walked into the street to hold the door  open until my leg was safely inside.  All of these incidents add up for an aging man who feels as if he could blow away in a strong wind or get punched out by a girl scout.

I look around on the streets of New York and hobble along as people of all ages brush by me, not rudely, only hurriedly.  I stop and stare at strangers running up or down subway stairs, their arms full, paying no attention to their feet and whistling a happy tune.  How do they do that? I wonder.  Watching them just makes me dizzy.

I am growing frail.  That is undeniable, not just fear for the future but reality today.  Deal with it, I tell myself. Work at home when the weather is boisterous.  Ask for help, opening heavy doors.  That is not my strong suit, but it beats thanking strangers for lifting  me up from the sidewalk.  I did not ask for this, but neither did anyone else.

Those with debilitating illnesses, hardly just MS, fight the battle for self-esteem.  Our physical failures challenge our ability to get by each day.  That chisels away our pride at who we are and what we do, no matter the arena.  The obvious solution is to lighten up and stop placing such importance on doors and stairs.  Let go of your resistance to asking for help.  And please let me know how it goes.  I will be here, siting in sullen silence. 

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