Chronic Pain Lifestyle

The Christmas Pirate

  I grew up in Ashland, WI on the shores of Lake Superior. Our house was on the corner of Third Street and Eleventh Avenue. We could see the lake from my parents bedroom window and from our front yard.

I lived with my parents, my two sisters Mary and Clare and my brother Mike. We were lucky enough to live across the street from my Mom’s parents. Having grandparents that close was wonderful. My Dad’s parents lived only six miles away, around the other side of Chequamagon Bay in Washburn. At night I would look at the lights of Washburn and say goodnight to them. I imagined that my grandparents were waving back at me and that I could see them.

Traditions were important with my family and because we lived so close to my grandparents, we celebrated the holidays together. On Christmas Eve we would go across the street to my Gramma and Grampa Berg’s house (where my Mom grew up).

Mom would usually make Clare and I our Christmas dresses. We would wear them proudly with a ribbon in our long hair, white tights and black patent leather shoes. We listened to Mom when she said to not get dirty, but being kids sooner or later it was bound to happen.

Before dinner seemed like a very long time. Clare and I would look at the presents under the tree and try to guess what we were getting. There were only a couple of gifts for us at Gramma’s house, the majority of presents were at home.

Just for fun, we would run up the stairs and slide down them on our butts. Thump, thump, thump in our dresses. We would laugh and laugh and keep running up the stairs until Mom made us stop. Later she would confess that as a child she would terrorize her grandmother by playing her trumpet and “charging” up the stairs in a scene reminiscent of the movie Arsenic and Old Lace. When the elderly brother who thought he was Teddy Roosevelt would blow his horn and run up the stairs like he was taking San Juan Hill. I could just imagine my Mom doing that. I think that’s where I get most of my sense of humor.

Anyway, we would suffer through dinner and then as soon as we were finished eating, we would sneak away. Clare and I would go downstairs to the basement to play. My Grampa Berg would come with. He would help us dress up in old clothes. Old dusty, dirty clothes and hats. We would smear coal dust on our faces and put styrofoam cigarettes in our mouths. We were pirates.

Grampa would tell us a pirate story from the high seas. We would watch him with big eyes while wearing our pirate gear. For us a pirate was in fact dressed an awful lot like Grampa in Grampa’s old clothes. The stories were thrilling, with wild wind storms and waves a hundred feet high and most thrilling of all was when Captain Hook himself would appear.

My Grampa was Captain Hook and he would chase us lowly pirates around the basement. It was a wonderful time. We would run and hide among the groceries that Gramma kept in the basement. Her pantry would feed a family of six for about eight weeks. There were all kinds of boxes and shelves to hide behind.

Then at the end of the story, Grampa would finish by saying “the end” and upstairs we would go.

We would quietly move up the stairs and through the darkened dining room and into the living room. At this point my Gramma would usually say “Rick what on earth have you done to those children? What are they doing in those filthy clothes and just look at their faces”.

By this time of course we were grinning from ear to ear because once again we had managed to have fun despite the dresses and shoes. I should mention that our white tights rarely made it through a whole day. I think my Mom must have always had extra white tights for us because I don’t think the coal dust on our knees ever came out of the tights.

Then we would talk long distance to Uncle Pete and Aunt Liz and then we would talk to Aunt Marilyn and Uncle Glen. After the calls where we wished everyone a Merry Christmas, it was time to go home. We would put on our boots, coats, mittens, scarves and hats, just to walk across the street. In those days, we had “real” winters. Temperature near zero, snow banks six or seven feet high and a bone chilling wind blowing right off the lake.

It wasn’t hard for us to fall asleep on Christmas Eve. I think that was part of the reason we got to go and play and get dirty. It wore us out and we would change into our flannel nightgowns and caps (yes we had little caps to wear). It was always very cold, but with our flannel nightgowns, caps and our blankets, we were warm. It wasn't long before we were sound asleep.

I like to think of Christmas at home back then, it was fun and full of so much hope and excitement. We would always get some exotic gift from my Aunt Marilyn. One time she sent Clare and I little light blue leather wallets with white daises on them. I can remember looking at that wallet a million times. I must have been about 8 or 9 and I never, ever used it. I saved it because it was so beautiful.

All too soon, Christmas would be over and we would take down the tree and put away the gifts. And then back to school and our normal routine.

And just like that, in a blink of an eye, I left my childhood and I’m 46 years old. Those days as pirates seem like yesterday and sometimes when I look in the mirror I wonder how in the world I grew up so fast. Where did the time go? Why couldn’t those days last longer? What does all this mean? Why are the holidays so hard?

I officially retired this week. As of December 28th I am no longer an employee of WEA. I don’t work anymore. I am, for lack of a better word, retired. Technically, I’m on a leave of absence as a result of a disability. Either way, it means I’m not going back.

No more dress code, no memos to read or write, no crisis, no on-call days when I’m on vacation, no printers to worry about, no policy rewrites to work on. No more lunch hours, morning breaks, gossip, treats, jokes, coworker birthdays, wedding showers.

So this is retirement. It’s kind of weird. It feels like I graduated from something and all my friends are still in school, but I’m done. I feel a little lost.

About 10 years ago, we had an inservice at work. We were told to write down where we would like to be in 10 years and what we would like our jobs to be like. I wrote that I wanted to get up, put on jeans and a sweatshirt, play with my dogs and work from home. All of those things have come true for me. I do work from home. My work is writing these columns or essays, to entertain people that I know and people I’ve never met. The stories are meant to provide an outlet for me and an explanation of how I feel and what it is like to have this disease.

Over the next few years I hope that I will improve and continue to write meaningful and sometimes funny stories that provide a little laughter to the reader. I will try my best to keep things short and to the point and most of all, to bring a smile to all those who are taking this journey.

Although this is not the journey I wanted to take in my life, it is the one I've been assigned to and I intend to take it with as much passion as I did in my working life. Life isn't something where you get a "do over" like you did as a child. You need to fully participate in every aspect of your life as much as possible. You have to be part of your life story, not just an observer. Even with a health problem, you need to lead your life, your way.

Just like being a pirate, if you are not part of the story, it really isn't much fun.

Happy New Years everyone.

Anne (A Christmas Pirate)

A Young Woman's View of Her Father's Illness

     As the New Year awaits sunset, I share an essay my 17 year old daughter, Sarah, wrote on her college request for admission to Amherst College.  I ask myself, "How much more love can be visitted on one man?"

“Young as she is, the stuff
Of her life is a great cargo, and some of it heavy:
I wish her a lucky passage. "
From The Writer by Richard Wilbur,

Amherst

Class of 1942, 1987 Poet Laureate of the

United States

 

            

            I will never again mistake one of life’s ordinary, everyday inconveniences for a genuine problem. My life was close to perfect; I had never experienced hardship of any kind, and my family and I were happy. Before I really had a chance to appreciate my life and my family, everything changed. Three years ago, my father lived an ordinary but happy life. He got up every morning, put on a suit, and went to work. On the weekends, he usually ran back and forth between the different sports games that my siblings and I played in, and when it was warm outside, he and I would play catch in our front yard for hours. On one snowy day three winters ago, everything came to a screeching halt.

            On that infamous day, several inches of snow had built up and frozen on our roof, and the ceiling in my parents’ bedroom had begun to leak. In an attempt to get the snow and ice off the roof, my dad, who was home with only my younger brother, leaned out a window and tried to smash the ice into pieces and knock it off the roof. When my mom, my sister, and I returned home, we found my father lying on his bed in absolute agony. He had thrown out his back trying to clean the roof. Three failed back surgeries later, he is now disabled and must deal with a back condition called arachnoiditis that will not ever improve. He is forty-seven years old, and the life that he once led is over. Life for my father is now a daily battle with pain. My strong, fearless father now spends more time lying down in bed than doing anything else.

            At times, I cannot even tell that my life has changed. I still spend my days at school, doing homework, or going out with my friends. However, there are moments when I cannot even remember what my life used to be like because so much has changed. The past three years have forced me to grow up very quickly; I am no longer a child, for instead of allowing myself to be taken care of by my parents, I must help provide the care. I play a major role in caring for my younger siblings; I have to help drive car pools, supervise them while they do homework, help them get ready for bed, and make sure their everyday lives run smoothly. I also have to care for my father who needs help with even the most ordinary of tasks, such as driving to the store or making himself lunch. There are no lazy weekend afternoons playing catch, there are no family vacations, and there are no trips to the movie theater because my dad cannot even sit through a movie. Business as usual does not exist; there is nothing normal about the way our family functions now. The truth of the matter is that my dad has a problem that none of us can fix.

When I look at my father, it is impossible for me to complain about my life. He has to experience pain all the time without any real form of relief. I have my entire life ahead of me, and there is no telling what may be in store for me. My father has the rest of his life ahead of him too, but he knows exactly what awaits him. He works to find ways to carry his burden each day, and he does so without self-pity or complaint. Although both our lives are now so very different, my father has taught me that we are still blessed. We have come to appreciate the extraordinary comfort of life’s ordinary pleasures. Despite how heavy our cargo may be, it cannot sink the ship. We will find safe passage together.

Merry Christmas Everybody

Merry Christmas Everybody,

Unfortunately my new story "The Christmas Pirates" is not done yet. I"ll try and finish it in the next few days. I've been busy with family and friends and time just got away from me. I'm sure you are all busy as well.

Isn't it funny how the older you get the more important the little traditions become? I find myself clinging to those old things as a reminder of the family and friends that are not near us this time of year.

I don't miss the snow, it's been raining here this week and it's not very cold.

i wish you all a Merry Christmas and Happy New Year.

Anne

Get Ready for Christmas

    I notice about this year and the past couple, when I became disabled, that this season although unseasonably warm, brings to my life good cheer, beauty, and hope for the new year.  Not much of significance changes from Christmas to Christmas.  Every Christmas is festive.  People are nicer.  Everyone seems to make an effort to spruce things up, and decorate.  Heck, even my local newsstand looks pretty; lights are blinking along the top of the Instant Lottery scratch-off tickets display.

     Getting ready for Christmas...lots of shopping...crowds at the mall. Last minute plans to visit my folks.

     Although it looks more like March than December, I can visit the snowy Christmases of the past.  This is my 47th.  I'm at or past that midpoint, now.  Forty seven more will mean I lived into my mid nineties; if I make it 'til then, God willing, I'll be a Great Grandfather and probably waiting for my Red Sox to match the heroics of that great team of '04.  The year will be 2063.  My wife will ask me if I remembered to pay the phone bill.

     I'll have a new home.  I hope it will overlook the ocean and that I'll have a porch.  I'll drink coffee and read the paper in the morning. Before lunch, I'll sit in my rocker and shoot my hunting rifle at the whales.

What's Normal?

       When people ask, "How are you doing?"  I'm never quite sure what they mean.  Of course, this is just another of many ways to say hello.  But, there's so much embedded in that question that I usually answer it as everyone else does, "Okay. Yourself?"  But, I'm not okay.  I wasn't okay as a child.  I never thought I was normal: not as a kid, not as a teen, nor as a healthy adult.  I sure don't feel okay, now.

     When I was young, I was afraid.  My greatest fear was that I somehow didn't measure-up to the expectations of other people.  If I was reticent I'd feel inadequate because I'd feel as if I were boring.  If I was funny or loud, I'd fear that people perceived me as a blow hard, or just a loudmouthed bore.  I always felt unattractive.  I think what I wanted more than anything else was for someone to say that they understood my feelings, that these feelings were normal, and that I was okay, or as I saw it, normal.

     I realize now that these feelings of inadequacy are normal, in a degree, but abnormal beyond a certain point.  I still don't know where that point is.  But as a child, I found that the most effective way for me to handle my fears of inadequacy was through a quiet, self-administered reanimation of myself.

     In my studies I was smart, but not smart enough, so I studied.  Then studied more. And more.  I was a hard nosed kid, so I fought with a reckless denial of injuries.  I became a smart, tough kid.

     Sports freed me from a cycle of meaningless schoolyard and back lot violence releasing me into an arena of violence for the sake of winning. 

     I was a slow runner, so I ran, mile after mile.  I found a steep hill up which I sprinted, down which I learned to lengthen my stride.  I ran until I dropped, I fought until some dropped me, and studied until I fell asleep.

     I excelled in all of the sports I played, terrified that I'd be beaten, even on one play.  My paradigm didn't include losing.

     I was named the most outstanding athlete in my high school class.  Strange thing was, I wasn't that good.  I just tried harder than other kids.  But that the whole thing was a sham, I'd be uncovered as that kid who was too quiet, or too loud, or too slow, or just not tough enough.  I knew I wasn't "normal".  I knew because my wrestling coach told my mother that it wasn't safe for me to drive myself so hard; that I was more like an animal on the mat than a person.  My football coach used me like a mafia don uses an enforcer.  I began to love what I was becoming.

     In high school I performed well enough in the classroom to draw the attention of the finest colleges in the country.  That and athletics, sent me off to the Ivy League.

     What had gradually been a slow deconstruction of myself followed by a wacky reconstruction turned into a pathway to success.  But along the way I'd hurt myself; true to the new me, I wouldn't admit this.

      I suffered more than 20 years of herniated disks.  After two surgeries to fix unendurable pain in my feet and legs, I had a third in which a Medtronics neurostimulator was implanted near my spine.  That and a steady diet of narcotics takes me to the point I'm at now.  Constant pain, mildly alleviated  from time to time, and a permanent spinal condition (if the doc's are right).

      About that fear, I was right.  It's the "normal" part that I got wrong.  There was I big whole in my life; I'm filling it now.  God accepts me for what I am...

      ...flawed, which makes me normal. 

My Dad's Last Laugh

NOTE: PLEASE SCROLL DOWN TO THE BOTTOM OF THIS ARTICLE BEFORE YOU START TO READ IT. I've inserted a picture below that explains how this whole thing started. Happy reading.

I think I’ve mentioned before that I lost my Dad in 1980, I was 20 and he was in his early 50’s. He was very sick before he died. He was a diabetic and in the 70’s they didn’t have the great testing tools for diabetics that they have now. Also, he didn’t take care of himself like people do today. He ate and drank things he shouldn’t and eventually his body gave out at a young age.

My older sister Mary and my brother Mike grew up and moved away from home, leaving Clare and I with our Mom and Dad. Mom and Dad both told us a lot of stories about what happened when they were growing up. It was always fun to listen and try to imagine what they looked like when they were little kids. It was hard to imagine either of them getting into trouble. That’s not entirely true, I can see that my Mom got into trouble. When I was little I thought she was Lucy. Seriously, I thought that was my Mom in that TV show.

But my Dad, he told different stories. In his stories there was always a lot of adventure. He told us all about his horse, and living on the reservation. He told us all about how he rode his horse to school every day and how he went barefoot all the time except in winter. And he told us all about going out into the woods to cut down a Christmas tree and with the help of his horse, drag it back to Gramma’s house.

Now those were the stories of my youth. My Dad on his horse, riding bareback to school. I wish I had a picture of that.

Dad was also a joker. He loved jokes and comedies. He would laugh until he cried at the Laurel and Hardy movies. And when Tim Conway joined the Carol Burnett Show, my Dad was laughing every Saturday night.

Every April Fool’s Day Dad pulled the same joke on us. We would be eating breakfast and Dad would go into the family room and then he would yell “Girls come quick, there’s a cow in the backyard!!” And like to complete idiots, every year we jumped up and ran “where, where!!”. And Dad would laugh and laugh. We never and I repeat never caught on to that one.

After my Dad died, I came home from college for the weekend and took my friend Angie, over to Washburn to visit my Gramma Al. My Dad’s mother had taken his death very hard. We all missed him. He died only weeks before I had to leave for college and Clare was just beginning her freshman year.

As Angie and I visited with Gramma Al, she started to talk about Dad and she started to cry. She missed him so much and she felt guilty that she lived longer than he did. I tried to comfort her as best as a 20 year old kid could do, I changed the subject to a happier one.

I asked Gramma if she had any pictures of Dad. She brought out a photo album and I glanced through it looking at all of the pictures from his childhood. Finally I said “Gramma do you have any pictures of Dad riding his horse on the reservation?”

My Gramma said “What reservation”.

“You know, the one that you lived on when Dad was growing up and he rode his horse bareback to school everyday.”

There was a stony silence.

And then my Gramma started to laugh. Her tears turned to laughter and she asked me where I heard such a story.

I didn’t have to tell her, she knew where I heard this story. And I realized that all of those stories, were not necessarily accurate. I was not Native American after all, even with the photographic proof I’ve attached here.

Dad had gotten us but good this time. We believed that he lived on a reservation and rode a horse to school and we weren’t little kids. We were in our 20’s!!

And when we realized that it was all a joke, we laughed too. I still laugh about it. He should have written his stories down, they were much more entertaining than mine ever could be.

I can almost hear him chuckling about that whopper of a tale. And for that I’m grateful. Your loved one’s laughter can warm your heart. We all need that now and then. When the pain gets too bad, all I have to do is open up a photo album and look at all of the smiling faces and remember those days. When I was a little kid with skinned knees and my biggest problem was that I had to go to bed at 7:30. That seemed like such a big deal back then.

Now when I sit alone and think about this past year and what I’ve lost, it makes me very sad. But the sadness is always quickly replaced by the knowledge that I did the very best I could, to continue working. I tried very hard to keep working and being productive, but I know that I can’t do that anymore. Admitting that I was no longer able to work is one of the hardest things I’ve ever had to accept in my life. Thank goodness for the gift of laughter and support of my family and friends. I’m dealing with the loss of my job much better than I thought I would.

There were a few other things that Clare and I’ve discussed that Dad did. We didn’t get most of his jokes until he had been gone for a while. For example, Dad liked to sing. One of his favorites was “O Sole Mio” very loudly. Usually after or before dinner of lasagna or spaghetti.

Then there was this other song “She used to kiss me on the lips, but it’s all over now.” I could never understand why my Mom got so mad at him for singing that.

I didn’t get that joke until I was in my 30’s.

Thanks Mom and Dad for all of the gifts, love, laughter, family. I would be no where without you.

Pain unto Despair

     C. S. Lewis said, "...there is no greater proof of sinful pride, than the belief in one's own humility."  Many of us bravely suffer unrelenting pain; unfortunately for me, I take great pride in my ability to suffer humbly.  I miss Lewis's point entirely.  I don't complain.  Thus my humility, but I make sure that everyone sees my cane.

     Lewis also writes about God and pain.  If God is good, and the Lord Jesus Christ is love and forgiveness, then why would he cause me pain?  Thus the true link between pain and His love. He sacrificed his only son so that all sins may be forgiven and that we may enjoy life everlasting, to a human death of unimaginable pain.  I wonder if His love is possible without the visitation of that pain?

     In the here and now, is it a Job like test?  Job does not yield in his belief despite his pain.  This seems to indicate a Holy love that springs from blameless suffering.  But what if this pain is something else?  What if it's punishment?

     How about punishment? The Bible is full of stories of God disciplining His children.

     Maybe thought, my pain is a path that leads me closer to God. Why does a  blameless man die on a cross of pain? He died not for himself, but for all men, then, now, and in the future.  Pain so strong it killed God so that the scripture might be fulfilled. Yet it was pain that made forgiveness and mercy possible; pain as the path to everlasting life.  This stuff's pretty confusing. Christians believe this.  I'm a Catholic, but I've really struggled to understand these things. I suppose all religions, even a formal lack of religion, struggle with the conundrum of life and human suffering.

     Puzzles too big for me.

     But I know this, pain in the absence of belief, is only pain to despair.  Surely, there's more to life than just pain for pain's sake, as most of us, believers or not,  would have to admit. We still enjoy friendships, a joke, a picture, a ballgame, a child.

     For me, I believe in something bigger than my little world. "Something" for me, is God: Father, Son, and Holy Spirit.   For you, whatever you believe in is something that's bigger than you are.  This something is also a "First Cause", the beginning. 

     You may call it science.  It really doesn't matter,  I think it matters that we believe in something : God, science (which I consider just a manifestation of God) or giant magical door knobs.   What you may believe is not mine or anybody else's to judge. 

     I think we must believe in something, otherwise what's the point:  Pain unto despair?