Travelogue - Tales with a Tail

Recently, my service dog Stone and I returned from a 5 + week trip, an East Coast tour of people and places I love. We spent time in places I used to live near enough to frequent frequently, but more importantly, we spent time with family I miss dearly and friends so dear they are a part of me.

It seems fitting that it’s Thanksgiving week when I finally have the time and cognitive energy to reflect on our adventure in writing because our trip was so filled with so many moments that reminded me I have so much to be thankful for.

Our adventure began in Williamsburg, VA, an area steeped with history and filled with people who love their heritage and who genuinely seem to love sharing it with interested travelers. There are lots of reasons I love Williamsburg, the life- alteringly good food at the Colonial Williamsburg restaurants being one of them, but I realized this time that one of reasons is that the people who work and volunteer in the historic sites in the Williamsburg-Jamestown vicinity, seem to get such joy from sharing their passion for history with others. Their joy and passion are contagious.

Next it was on to the southernmost tip of the Jersey Shore, Cape May Point or, as it’s known to those of us who have the Point in our souls, The Best Place on Earth. (Sorry Snooki et al, there are no bars or liquor stores in the Point so there’s no point in you stopping by.) The Point is a bird sanctuary and as it was both bird and monarch butterfly migration season, the area was filled with birds and butterflies and birders, the latter of which are easily as fascinating and engaging a species as the first two.

In addition to soaking up the sights, sounds and smells of my youth and adolescents, I was able to spend time with both family and friends and have two glorious girls’ weekends during which I talked with old friends (oops I mean long time friends), pretty much non-stop during our waking hours.

Two of the friends were women with whom I’d spent nearly every day and night during the summers I was 14 and 15 but then we grew in our own separate ways. I am fairly certain I hadn’t seen one of these women since I was 15 years old. What a great joy it was to be reminded that it wasn’t merely proximity that bonded us together, rather, it was a similar view of the world and clearly, and I do mean clearly, a shared sense of humor as well as an apparent affection for a well…, um…., let’s call it a “party game” called Riki Tiki Bear. All these years post brain injury, sometimes I still have trouble remembering how to divide, yet I can recite verbatim, with proper cadence and in complete unison with my long lost friends the words to Riki Tiki Bear. I am choosing to believe this is a reflection of the quirky nature of brain injuries rather than a reflection of my quirky brain’s priorities.

From there it was on to Washington DC to visit with the “DC contingent” of our family and with more friends who feel like family, all people I love so much I forget how much I miss them until I’m with them. While I lived in the Maryland suburbs of DC for years, I’ve never grown immune to the majesty and grandeur of the museums, monuments and federal buildings in the seat of our Nation’s capital. This trip I was able to see three new-to-me monuments, the FDR, the World War II and the Martin Luther King, which opened for visitors while I was in town.

Growing up in our Irish Catholic family, FDR was more revered than even the winningest coach of Notre Dame. Our Grandfather, like so many men of his time, lost his business in the Depression and, with the help of one of FDR’s loan programs, bought a farm, where he started over, literally, from the ground up. As I walked through the Memorial, I thought about my Father and the stories he told about his own Father and about growing up on that farm and I missed him just a little bit less.

Just a short walk around a portion of the Tidal Basin is the Martin Luther King Memorial. I’d seen it on the news just a few days before on the day of its official opening. Frankly, I had not really liked what I’d seen on TV of the Memorial so I was completely taken aback by my reaction as I turned the corner and entered. Tears flowed down my cheeks as I stood in awe of the Memorial, in awe of the man who had changed the course of history with his words and his dedication to non-violent protest.

I walked further and stood in a small crowd of people looking up at the towering central statue. This group of strangers, who’d never met before entering the Memorial, were all interacting and laughing and taking photos of each other. It was unlike any crowd viewing any Memorial I’d ever been a part of. I stood there a long time. I stood there as two more groups of strangers came and went and they too were talking and laughing and snapping photos as if they were long lost friends. More tears flowed down my cheeks. Much like the man himself, it was awe inspiring.

On another day I visited the World War II Memorial to give thanks to not only my Father who, as a boy, fought alongside other boys in the Battle of Okinawa, but to an entire generation of men and women who sacrificed so much for so many and who role modeled for all of us how to put the good of the country and the common-good above our own individual welfare.

As always, traveling with Stone provided ample opportunities to be amused and and just as many opportunities to remember how incredibly lucky I am to have him in my life. As anyone with a service dog will attest, people are intently curious about our canine companions and like most Mom’s, I’m convinced there is something uniquely special about my baby which serves to increase the number of inquiries and admiring glances we receive.

In answering the questions of curious strangers, time and time again I told the tale of Circle Tail, the non-profit organization that trained Stone. I talked about how they rescued all the dogs they train to be service dogs and that they partner them with persons with disabilities and hearing impairments at no cost to the recipients. When they wanted to know more, I told them “our story”, at least the cliff notes version, about how Circle Tail had rescued Stone when he was 8 weeks old and placed him in their Prison Training Program for nearly 3 years where he rescued prisoners by giving them a chance to love and be loved and an opportunity to give back to the community and then went on to rescue me from a post-brain injury life of dependence, isolation, inactivity and inability.

As I listened to my own words and watched the reaction in the faces of strangers, I realized that I am living a Lifetime Movie Network feel-good, inspirational movie of the week. And I was grateful. And I am grateful. Each and every day I am eternally grateful to Circle Tail for rescuing my beautiful and brilliant beast and then for giving me the tremendous privilege of being his human partner and I am equally grateful to this amazing animal who has quite literally transformed my life.

Valerie Bertinelli, if you’re out there, I want you to play me in the movie. Stone will, of course, play himself.

As adventures with Stone always are, this trip was filled lots of laughter courtesy of my canine. While he didn’t add to his list of “States and Countries I’ve Peed In”, which is, after all, the whole point of any road trip, he did teach himself a new skill. Museums, historical buildings and the like have always been on his Top Ten Things to Avoid on Vacation, but during this trip, he learned a sure fire way to get to leave when it’s been “enough already – how much old crud can you look at?”. He taught himself the fine art of looking as if he is about to throw up and I have to say, it’s quite effective. We did in fact make a hasty retreat. Mind you, in neither instance when he employed this tactic did he ever actually get sick and it’s worth mentioning that in all of our years together he has never once looked like this without actually getting sick. Yes, it’s pretty clear who the brains in our partnership is.

On our way to Cape May, we took the Cape May-Lewes Ferry across the Delaware Bay. During the Ferry crossing, I had my favorite to date “I-don’t-care-what-you’re-in-the-middle-of-doing-I want-to-pet-your-service-dog-and-that’s-so- important-it’s-okay-I-interrupt-you” story, which we service dog people share with each other accompanied by squeals of laughter. The day before, I discovered I’d inadvertently run out of one of my brain injury medications and rather than call my Doctor on a weekend, I decided to tough it out and wait until Monday. So, I was sick before we got on the Ferry to find the water considerably less than calm.

I was laying on a bench, vomit bag in hand with a back up nearby and Stone was asleep-ish with one eye open focused on me, under the table. I’d finally fallen asleep when I was awoken by, you guessed it, “Excuse me. Excuse me. Excuse me.” each time a little louder than the last. I opened one eye and found a Ferry employee looking down at me. Thinking she was there to offer some sort of assistance I sat up, sort of. Alas, I was wrong., what she really wanted, of course, was to ask “Can I pet your dog?” I explained “No. He’s working. “ and before she could ask more about him I added, somehow mustering up my nice voice in spite of the narrative going on in my head about her, “And I’m really not feeling well so I’m gonna lay back down now,” to which she said “Oh yea. I saw your sick bag when I walked up so I figured you weren’t feeling well.” I try to keep my blog rated PG so I will refrain from sharing what the narrator in my head had to say about her when I realized she knew I was sick and still felt compelled to wake me.

In Washington DC, we had lots of fun educating Taxi Drivers about service dogs. I learned quickly I had to call dispatch to request a cab because drivers wouldn’t stop when they saw Stone. Little did they know he’s, by far, much better behaved than I am.

My favorite Cabbie moment came in front of the Martin Luther King Memorial. We had just come from the incredible moving Memorial and I called dispatch to request a cab. When he got there he said “You have a dog. You can’t get in my cab,” to which I explained that he’s a service dog, just like a guide dog for a person who is blind. “I don’t care. You can’t get in my cab.” The conversation went on for several minutes, with me explaining that it’s against the law to tell me I can’t get in his cab, that it would be like saying to someone “You can’t get in my cab because you’re blind.” etc. His reply remained consistent, “I don’t care. You can’t get in my cab.” Finally I told him he could lose his Hack license and that if he drove away I would report him. This got his attention a bit and he was now willing to compromise: “Okay, but he has to ride in the truck.”

Can real life get any funnier than that????

Shockingly, I was unwilling to put Stone in the trunk so he did in fact drive away, giving me an amazing, once in a lifetime, goose bump-moment opportunity. I got to call and report my civil rights had been violated standing right there in front of the Martin Luther King Jr. Memorial. Often people refer to the quest for equal rights for persons with disabilities as the “New Civil Rights Movement” and there I was at the entrance of the Memorial built to honor the Father of the civil rights movement standing up.

Stone is particularly proud of our next funny taxi story. We were in DC near the rear entrance to the White House. While it had been raining on and off, the rain started coming down pretty hard. I tried to hail a cab, but, no surprise, no one stopped for my wet dog and I. There was a DC police officer on a bicycle talking with the two uniformed Secret Service agents guarding the back gate of the White House. I approached the officer, explained that I couldn’t get a cab to stop for my service dog and I in the rain. One of the Secret Service agents, without hesitation, walked into the middle of the street, pointed at a cabbie going the other way and asked “Are you headed to pick up a fare?” When he said “No”, the Agent instructed him to “Do a U-Turn and pull over here.” He then opened the cab door for us, asked me where we were going so he could tell the driver and added “This is a working dog so I don’t want to hear that you gave her any trouble about it.” Stone is convinced he’s the only dog who has ever had the Secret Service hail a cab for him.

One of Stone, (and my), favorite parts of the trip was a weekend stay with our friends Frank, Maria and Mia. For Stone, I’m fairly certain their house was a lot like Disneyworld. First, the human to dog ratio was excellent, especially because all 3 of our hosts are dog lovers. Next, they have 3, count ‘em 3, cats, to stare at obsessively. When one gets boring, move on to the next, sort of canine channel surfing. Then finally, they have an open door walk-in pantry filled with endless goodies and endless good smells. I would find him there periodically, standing, gazing lovingly at the food with an “all’s right in the world” expression. In fact, since they had Wheat Thins, which are forbidden in my house because to me they’re like Crack, I would, on occasion, join him and together, the two of us would gaze upon the goodies.

And so, on this Thanksgiving weekend, to all of those who made my “East Coast Tour of People and Places I love” so wonderful, Wood and Stone and Donna and Nancy and Lee and Mark and Karl and Norah and Patty and Randi and Debbie and Leilah and Mo and Mo’s Frank and Bongi and Craig Joe and Frank and Maria and Mia and Richard and Richard’s pie, you are all on my list of things for which I’m grateful. Thank you for being in my life and for sharing our adventure.

A Father's Legacy

On Father’s Day, I am struck, yet again, by how lucky my sister, Lee, and I are. Growing up, we had 3 great Dads, our Father and two older brothers, Don and Tom. Each had a unique style and unique skills. Together with my Mom, they did a whole lot of things right.

I learned so many valuable lifelong lessons from my 3 Dads. From them, I learned to believe I had the ability and the courage to take on any challenge I chose to face and I learned the paramount importance of both family and friends. From my Dads I learned that encouragement and positive feedback are immensely more motivating than criticism and punishment. They taught me how to tell a great tale and how to find the funny in almost any situation and they shared with me their deep appreciation of our Irish heritage.

All of these lessons have served me well in life, although at the risk of being haunted tonight by the spirits of my Dad and brother Tom I will admit I seem to have gotten along just fine without ever having learned to love a pint of Guinness or take a position in the Jameson v. Bushmills Irish Whiskey Wars. (I never could down a glass of either without gagging.)

While all, (okay most), of what they taught me growing up served as a foundation for much of the life I built for myself as an adult, one particular life lesson I learned from my 3 Dads became the building block for a fundamental part of the person I strive to be. My Dads taught me that not only can each of us make a difference in the world, we are morally obligated to do so.

When my Father passed away, my Step-Mom Noriko, generously shared with my siblings and I many of the treasures she and my Father had collected. While I love all of the beautiful Japanese pieces that now decorate my home, my two favorite treasures are the marbles my Dad won on the playground in Ballston Lake, NY that my Aunt Kathleen rescued from my Grandmother’s attic and his statue of Don Quixote, a literary knight who refuses to surrender his sense of right and wrong even when those around him see him as a lunatic tilting at windmills. (Okay, I know in the story he does in fact tilt at actual windmills, but that’s beside the point.)

I was 11 when my Dad got his first bachelor pad. True to the stereotype, the furniture was sparse, but he did have a state of the art sound system – a quadraphonic stereo complete with an 8 Track Tape Player. His favorite 8 Track, and for a looooooong time seemingly his only 8 Track, was the soundtrack to The Man of LaMancha, the musical version of Don Quixote’s story. While I’m fairly certain that, on a conscious level at least, my 11 year old self failed to recognize the profound moral insights my Dad heard when he listened to the tape, I understand now why my father was so drawn to this character. ( Although it’s true that at 11 I didn’t really “get” my Dad’s love for this soundtrack, it did provide lots of opportunities for good natured teasing that live on in my heart as fond memories of Dad’s Cincinnati bachelor pad days.)

My Dad didn’t encourage any of us to actually tilt at windmills/lost causes nor did he himself do so. What he did do and what he hoped my brothers and sister and I would do, was refuse to surrender his own sense of right and wrong, even, like Don Quixote, if those around us think we are lunatics. 

What my sister and I saw all 3 of our Dads do, was to consistently stand up for what they believed to be right. We watched and learned as they spoke up against injustice and for causes they believed to be just and as they put themselves on the line and risked rejection and reprisal in order to strive to make the world a better place. Our Father did add one very wise caveat, a reminder that it was also crucial for your cause that you live to fight another day, which means there may be times when you have to choose to walk away.

Every family has stories. Every family has stories it tells at holidays and Sunday dinners and family reunions and weddings and funerals. One of my family’s stories is about my brother Don who, while in grade school, (maybe first grade?), led a boycott of the milk served in his Catholic School lunch room. I can’t remember what was wrong with the milk. Frankly, I’m not sure anyone can anymore. Now I have no doubt the nuns and priests were less than amused by this uprising and in many families, his behavior would have been punished. Given that my Uncle was a Priest, it may seem reasonable to assume angering an entire school of nuns and priests would have been frowned upon at our house. But, my parents were impressed with Don’s willingness to risk punishment in order to stand up for what he believed was right and praised him for it. (Well at least all these years later that’s how the family story goes. I suppose it’s possible that, true to our family’s Irish heritage, the story could have been a bit, shall we say romanticized, over the years, but I prefer to believe that it happened just as it’s been told to me countless times.)

Some years later when the next brother in line, Tom, asked our Dad for a raise in his allowance and was turned down, so family legend goes, Tommy walked up and down in front of our house with a sign that read “Management Unfair.” Fast forward another 8 years or so and you would have found Tommy babysitting me one day when I was about 7, telling me we were going on a really cool adventure. He took me to the Mt Washington Kroger’s to picket on behalf of migrant farm workers. The picket signs were taller than I was and he was right, it was indeed a really cool adventure.

Given those family stories, you will understand why, when the first time I heard someone say “You can’t fight City Hall” my reaction was something along the lines of “Say what now?”

I was raised to believe that not only can you fight City Hall, if your cause was just, you should fight City Hall.

In my family, striving to make the world a better place often includes, but is in no way limited to, being active in political and social causes. But, by no means do I see politics as the be all and end all of each of us as individuals making a difference. There are in fact a limitless array of ways to live up to one’s moral obligation to make a difference in this world. Actions as simple as being patient with the obviously new and painfully slow cashier or bringing the trash cans out to the curb for the older adult down the street have a ripple effect that keeps on giving far beyond your gesture of kindness.

Teach your children to speak up when they see someone being bullied and to not just refrain from talking or typing hurtful things about other kids but also to voice their disapproval if their friends do it.

At work, whether you’re the boss or low person on the totem pole, strive to make your work place a healthy place to be. Many of the “battles” I watched my Father wage were about work. He worked for the same company, Equitable Life Assurance, from the time he came home from World War II until the day he retired. He was fiercely loyal to the company and to the people he referred to as his Equitable family. He wanted The Equitable to not only provide outstanding services and products to its customer and great financial rewards to it’s stock holders, he wanted it to be a great place to work. And like Don Quixote, he had a strong sense of what was right and what was wrong and he fought strategically for his cause. He consistently went out on a metaphorical limb to make that piece of the world a better plac and all the while, my brothers and sister and I watched and learned.

Now I watch with awe the next generation of Mooneys and their incredible dedication to making the world a better place and in my mind I can hear my Dad’s 8 Track Tape playing “I am I, Don Quixote, The Lord of La Mancha”.

3 Steps Forward 2 2/3 Steps Back

Recoveries, life in general I suppose, are fraught with setbacks. Whether you’re recovering from an emotional trauma inflicted during childhood or from a case of tendinitis sustained while perfecting Deep Purples’ “Smoke on the Water” on Guitar Hero, the path to good health is seldom, if ever, a straight trajectory.

This particular inconvenient truth, rings especially loud when you are recovering from a brain injury, a recovery process that all too frequently feels like 3 steps forward then 2 and 2/3 steps back.

The Brain Injury Association of Ohio provides me the great privilege of facilitating a support group for brain injury survivors. At our most recent meeting, I was reminded that I am not alone in living with the reality that the lifelong recovery from a brain injury can be filled to the brim with setback after setback. I met a woman at the group, who, like me, has sustained multiple brain injuries. (Once you’ve had a brain injury, you are at a significantly increased risk for additional brain injuries.) In addition, like me, she’s had other medical problems, (in my case surgeries), that have resulted in setbacks in her brain injury recovery. Like me, she too has days when she feels like her recovery process has been 3 steps forward and 2.99999 steps back. Each time a setback occurs, we have to work hard, and I do mean hard, at rehabilitation just to return to our “baseline”.

As is so often the case in our support group, on the one hand, I felt comforted by the vivid reminder that I am not alone in my experience, that there are other people who have a visceral understanding of what I’m going through. On the other hand, I wouldn’t wish membership in this particular club on anyone. But, if you have had the misfortune of “learning our secret handshake”, I hope that you too are able to find a support group of brain injury survivors who can help you feel understood, which in my mind is a key component of healthy recovery.

My most recent setback began with back surgery last March. I had injured my back in the car accident in which I sustained my original brain injury, nearly 16 years ago. Over the years, it had gotten worse through wear and tear and as my Rehab Doctor put it “gravity”, which I’m pretty sure is his polite way of saying I’m getting old. The surgery went swimmingly well; the recovery, not so much.

A week after surgery, I fell during Physical Therapy and tore my scar tissue. When it re-formed, it trapped the nerve causing significant nerve pain in my foot and leg, but this time there was no surgical remedy available.

The first several months were a whole lot of wait and see followed by adding medication at increasing doses for the nerve pain in addition to the waiting and the seeing.

I am not gifted at wait and see. It doesn’t come naturally to me. ( I imagine those of you who know me well will be somewhat less than startled by that revelation.)

Thankfully, I’ve now moved beyond the waiting and the seeing. With the help of some amazing professionals, I’m working on both loosening the grip the scar has on the nerve and working to return to my pre-surgery cognitive baseline. The constant pain, the significant decrease in the amount of exercise I can do, the challenge of trying to manage my life while spending much of the day laying down, the physical and emotional stress, the new medication and the worsening of migraines from epidurals have all resulted in a decline of my cognitive abilities, including my cognitive endurance, my memory and my ability to create and carry out daily plans or, for those of you who like that fancy Doctor-speak, my Executive Functioning skills.

Happily, I am improving. Because of the hands on help from my case manager from Plan of Southwest Ohio, my organizational skills are improving. While I still have reminder notes at various strategic places around the house reminding me to shower or make dinner, now, more often than not, I actually remember to follow the instructions on the note. Although I’m making progress in my ability to follow a daily plan, I do appreciate the info. my niece Leilah and friend Dianne sent me about how not showering every day is both hip and healthy. I forwarded it on to my case manager as part of my ongoing campaign to convince her that returning to Facebook should be a higher priority than hygiene.

Thus far, I’ve completed only the first half of my cognitive evaluation. Going into the eval, I was comforted by the realization that now that I’m just a few months shy of 50, my scores will be compared to the scores of older adults to see how I stack up against the norm. I’m hoping that means the bar for “average” will be at least a little lower than the last time I was tested. Finally, an advantage to aging, well, that and as Wood recently pointed out, now that we’re older, we don’t have to worry quite so much about people killing us to steal our organs to sell on the black market. :)

During the evaluation, I completely bombed on one particular task involving a map of a zoo. About 10 minutes in, when I realized I had absolutely no hope of succeeding, I announced “I’ve just decided to join PETA and we denounce zoos.” I ‘m hoping she gives extra credit points for being funny. ( I’m pretty sure that’s how I passed High School Physics.)

I failed on the zoo task because I wasn’t able to follow the instructions she’d given me. The evaluator, no doubt, concluded I was unable to hold the instructions in my memory and then apply them to the task at hand. However, those of us who are familiar with my family have to wonder what role our apparent genetic propensity to ignore instructions and re-write the rule book may have played in my failure.

As I reflect on the paragraphs I’ve just written, I’m struck, yet again, by the complexity of the human brain and the curious nature of brain injuries. On the one hand, I am quite capable of writing this blog entry and, on the other hand, I’m having so much trouble planning my day, remembering to shower is a victory.

Physically, Stone and I are both continuing our mutual rehab via walking , slowly increasing our speed and distance. For both of us, our physical endurance varies somewhat from day to day, but we are both improving.

The world’s greatest chiropractor, Dr Maureen Boylan, (and yes I would say that even if she didn’t read my blog and even if her sister didn’t date my brother Tom when they were in college and I was 11 or 12), has begun working on loosening the scar tissue by stretching my lower back and on breaking up the scar tissue using the Graston Technique, in which she’s certified, and which, to be honest, is more than a little uncomfortable.

Pain for a purpose is just fine with me.

In addition, later this month, I’ll have the 3rd in a series of 3 epidurals that help not only decrease the pain but hopefully will also help break up the scar tissue. The epidurals will be followed by a week of IV therapy via home care to reduce the migraine pain aggravated by the steroids in the epidurals. I call it the IV Migraine-Be-Gone cocktail. I did this sequence last Fall and I’ll likely repeat it again sometime later this year.

Pain for a purpose.

I’m also doing a series of stretches multiple times a day as this too should help loosen the scar’s hold on the nerve. The stretching is really a two-for exercise in that it serves as rehab for the part of my brain that processes motion, which, over the past year, has again become significantly impaired. The stretches leave me dizzy and nauseous but also leave me knowing I’m doing what I need to do to get better.

Pain for a purpose.

As I read back over the last few paragraphs, I realize it may sound horrible.

It’s not. It’s hopeful.

Okay, on some days it feels a little horrible.

Getting back to our most recent brain injury support group meeting, I was sitting at a table with a group of incredibly strong men and women, all of whom have coped with the reality of living with a brain injury partly by becoming their own best advocate, by becoming active participants in their own recoveries, by becoming active participants in their own lives. (I told you it was a privilege to facilitate this group.)

As I was sitting listening to brain injury survivors talk about all they had learned about brain anatomy and brain injuries, about complex brain imaging procedures, and about rehabilitation and recovery, I suddenly realized why I’ve been feeling so much better in the last month. It’s not just that the nerve pain has decreased to some degree allowing me to do more physical rehab and it’s not just that my cognitive skills have improved enough so that I no longer feel quite so overwhelmed by life so much of the time and that I now remember to shower before I start offending even the dog (well usually anyway). I’m feeling better because I’ve made a conscious effort to talk about the feelings – the fear and frustration, the sadness and grief – that have accompanied this setback and because, as I’ve announced to nearly everyone who will listen, I’ve got a plan.

Together, my rehab team and I have created a plan for how to move forward. I feel in charge of my own life again. I’m doing everything I can to maximize the likelihood I’ll get the outcome I’m hoping for – a return to my pre-surgery cognitive baseline and complete relief from nerve pain or, more realistically, a dramatic decrease in pain.

According to my rehab doc, the odds are in my favor, although it may take another couple of years to get there. Most days I’m okay with that. I’m not thrilled about it, but I’m okay with it, because I have a plan. I helped create the plan. I play a central role in implementing the plan. I’ve got a plan and with the plan comes at least an illusion of control over what’s happening to me. I’m making choices, healthy choices, to maximize the likelihood I’ll have the best of all possible lives, now and in the future.

Looking back on all the time last year I spent waiting and seeing, suddenly I realize that I had a plan then too. The plan was to follow the advice of my very skilled, very experienced rehab doc, who, in the 15+ years I’ve known him, has never given me bad advice, who has been the choreographer of my truly remarkable recovery from brain injury these last nearly 16 years.

The waiting and seeing and being fairly inactive, wasn’t something that was being done to me; it was something I was choosing to do because, according to the advice of a trusted medical professional, it was in my long term best interest. It was pain for a purpose.

I wonder how less frustrating the waiting and seeing would have seemed if I had re-framed it in that way while I was going through it. I wonder how less frustrating it would have seemed if I had remembered that while we can’t control everything that happens to us, whether we realize it or not, we are always making choices about how we deal with the painful realities that life presents.

As for me, I will be eternally grateful that my family, friends and rehab. professionals continue to empower me to make healthy choices even in the face of life's difficult challenges.


And now for the part of this blog entry I know most of you have been waiting for, the part that kept you reading, hoping the next paragraph might include what you’ve been wanting to know – How’s Stone?

He is, of course, still completely adorable and still significantly smarter than I am.

Heart health wise, he seems to be holding his own. The medication and special prescription cardiac formula food definitely seem to be working. His last ECHO cardiogram was in November at Ohio State and we did the dance of joy when the cardiologist, a.k.a. Dr Grand-Pooh-Bah, told us Stone’s dilated cardiomyopathy had not progressed and that his heart may even be contracting a little bit better. His next ECHO cardiogram at OSU is in April and we’re hoping for more good news.

Last week an internist diagnosed him as having hypothyroidism, but his cardiologist looked at the same lab work and disagreed. Stone’s amazingly wonderful if-I-were-a -dog -I’d-for -sure-sniff-her-butt primary care Vet, Dr Kohls, at Beechmont Pet Hospital, is helping us sort it out and decide how to proceed.




Resources:

To find a brain injury support group in Ohio:
Brain injury Association of Ohio - www.biaoh.org or by phone 866-644-6242

To find a support group in other states:
Brain Injury Association of America – www.biausa.org or by phone 800-444-6443

Plan of Southwest Ohio is a private, non-profit organization that provides case management and support services to persons with disabilities.
For information – www.planswohio.org or 513-821-6111

Dr Maureen Boylan, Hands of Light Chiropractic - 513-231-2892

As a Matter of Fact it is a Laughing Matter

Recently I got an email from a dear old-new friend. In it, she told me about all the life challenges she’s currently facing. It was a long list of serious problems, so long in fact, it would have been more than understandable if most days, she stayed in bed with the covers pulled over her head.

But she doesn’t. Instead, she gets up every day and goes to work in a human service organization where she strives to improve the quality of people’s lives. Her email was honest and painful and poignant and funny. She commented on the latter noting “Well at least I still have my sense of humor.”

I would venture to say that her gift for laughter plays an important role in her ability to get up every day and make the world a better place. This realization confirmed what I had already felt . My friend and I resonate on the same frequency.

Those of you who know me, know that laughter is a key component of my strategy for dealing with the too often unavoidable painful realities in life. In a motivational speech I give entitled “Building a Life You Like Even When It’s Not the One You Wanted”, I talk about the importance of humor.

If you’ve ever taken Psychology 101 you may remember that there are a number of Schools Of Thought within psychology, Psychoanalytical, Behavioral and Cognitive, to name a few. Each provides a framework through which we are suppose to see our world, our fellow humans and ourselves.

In the past 15 post brain injury years, I’ve developed my own School of Thought. I’ve kept it simple; I do have a brain injury ya know. :) I call mine the Bumper Sticker Approach to Life. One of the cornerstones of my framework, one of my favorite bumper stickers is Find the Funny.

Finding the humorous anicdote in life's most embarrasing moments can completely eliminate their ability to shame us.

I have to confess that when it comes to this particular principle of my philosophy, I have a distinct tactical advantage. First, I come from a long line of Irish story tellers who have refined sarcasm to an art form, so I have both nature and nurture on my side. Plus, when you have a brain injury and when everywhere you go you bring a large dog, (and I do mean everywhere), if you are looking the “right” way, funny stuff happens to you all the time.

For example, there was the time at the grocery when an older woman in a very, very short skirt was choosing apples to buy. As Stone and I walked past, she leaned in, reaching for the apples in the back of the bin and my sweet, innocent, brilliant, well trained, impeccably behaved service dog stuck his snoot right up her skirt

She was not amused. Clearly, the rest of us sure were.

Public restrooms are a routine source of laughter for me. There’s nothing quite like the reaction of a woman who’s using the restroom when a large dog snoot suddenly appears poking in from the stall next to hers. Heck, he’s just trying to be friendly.

The deficits form my brain injury are often a great source of amusement for me. Frequently, I have “word finding” problems. Sometimes I draw a blank and stumble and stutter ‘till the word I’m seeking finally comes to mind. But sometimes, while I’m talking, without my even realizing my brain couldn’t come up with the word I intended to say, the completely wrong word comes out of my mouth. Often, I don’t notice I’ve said the wrong word, no matter how non-sensical my sentence has become because of it.

This vocabulary mix-up is a very common symptom for people with brain injuries. When it happens to me, most of the time, the word that comes out of my mouth sounds similar to the word I meant to say, even when their meanings aren’t remotely the same. So, for example, if I meant to say “hat” I might instead say “bat”, then I’d just go right on talking without noticing my mistake. As you might imagine, this deficit can lead to some pretty entertaining conversations.

There was the time a few years ago when I was talking with a small group of acquaintances about the advice an Arborist had given us to ensure our old growth trees survived the summer of draught. It’s important to note here that these were only acquaintances, not friends. By now, many of my friends are quite used to helping me find the funny in my vocabulary mistakes. I was talking for probably several minutes about what the tree specialist had told us, when it occurred to me that no one else was participating in the conversation. I looked around and saw that every single one of them stood in stunned silence looking at me, jaws hanging open. One woman had gone quite pale. A brave gentleman cleared his throat uncomfortably and then asked “You had an abortionist come to your house to look at your trees?”

OOPS!

Reading is often another source of amusement at my house. Since my injury, when I’m reading, my eyes and brain are often out of synch. My eyes move faster than my brain can read. To compensate, my brain will often read the first part of a word and in it’s struggle to keep pace with my eyes, it then makes an educated guess about what the rest of the word is. Basically, without my even being aware, my brain simply makes stuff up. Typically, when I get to the end of the paragraph I realize something does not compute. As I write this, I’m suddenly seeing visions of Lucy and Ethel trying to keep pace with the assembly line conveyer belt at the candy factory. In either case, laughter ensues.

Just last week I was reading an email from a Rehabilitation on-line discussion group/ list-serve to which I subscribe. Rehab. Psychologists use the group to seek advice and share resources and expertise. A group member sent an email requesting recommendations for treatment strategies when working with a client with Capgras Syndrome, a serious and rare disorder in which an individual believes his spouse has been replaced by an identical imposter. I read the opening sentence of the email and this time it took me only seconds to realize something definitely did not compute. I stopped mid sentence and asked myself out loud “When on earth did Crap-Gas become a psychiatric disorder?”

When I realized my mistake I have to admit I wished there were a 12 year old boy in the house who would fully appreciate the humor.

But, my all time favorite opportunity to find the funny, occurred a few years ago at a health club. I was recovering from a stress fracture in my leg. (It turns out if your brain doesn’t have complete control over one of your legs, jogging isn’t a good idea. Who knew?) I decided swimming would be great exercise while I was recuperating. Since my brain injury, I hadn’t been in a pool except with a Physical Therapist and I hadn’t even done that since the first two years after my accident. Even with a Therapist by my side, the experience was… well… let’s just say challenging.

As Stone and I rode the bus to the health club, I began to get nervous, wondering if perhaps this time my eyes really were too big for my stomach, figuratively speaking of course. I assured myself I would be fine, after all the pool had a lifeguard. The battle between my nervous self and my I can do this self lasted the entire ride. In the end, the knowledge a lifeguard would be there if I had a problem, convinced me to ignore my nervous inner voice who wanted to delay my swimming debut until someone could go with me to the pool.

Naturally, when I got to the pool the first thing I looked for was the lifeguard. He was there all right, but not only did he look as if he were nearly 70 years old, he was asleep. I was, shall we say, somewhat discombobulated.

I was so stunned in fact, I didn’t notice the sign outside the locker room door I entered. I wish I had, because it said “Men’s ”. (Yes, as a matter of fact, the word “Oops” is a regular part of my daily life.) I walked in past the unnoticed sign, turned the corner and right in front of my eyes was an 82 year old gentleman sitting naked in the hot tub. We were both surprised.

I mumbled a hurried apology and quickly made my escape. Can you imagine the conversation that poor man had when he got home? “You’re telling me a woman and a dog walked in on you when you were naked in the locker room. Henry, you promised you’d stop drinking during the day.”

Yes, my life is rich with opportunities to find the funny, happily so.

And so, my dear friend who’s email inspired this entry, my wish for you is that you continue to laugh when you can and cry when you have to. Please know, I will be right here handing you virtual Kleenex whether your tears are from laughter or pain.

The Before Part of Before and After: Life with Stone

In the last six weeks, as we've been talking with doggy cardiologists, learning about dilated cardiomyopathy and implementing a plan to increase the length of Stone's healthy life, I've been thinking a lot about all this amazing dog has done for me. To simply say he's transformed my life would undoubtedly make me the master of the understatement.

To truly understand the bond Stone and I share, to truly appreciate the contrast between the Before Stone and After Stone, you first have to get a snapshot of the Before photo.

When I woke up on the morning of June 26, 1995, my guess is my life was a lot like many of yours. I worked in a non-profit human service organization that provided services to people with disabilities, which basically means I worked absurdly long hours for absurdly low pay.

When I wasn’t working, I was spending time with family and friends, volunteering for other under-funded nonprofits or completing the litany of tasks that come with life (the cooking and cleaning and waiting for the cable guy). I read voraciously, (not Tolstoy mind you), and sort of kept up with the latest trends in music. (In my defense, I grew up spending summers on the Jersey shore listening to Bruce Springsteen and really what new artist can compare to that?) I traveled whenever I could, found digging in the dirt in my garden therapeutic and with varying degrees of success, tried to find time to exercise.


That was in the morning on June 26th.

By the end of that day, an auto accident left me with a traumatic brain injury and in a few short moments on a highway in Philadelphia, I traveled from social worker to client.

In the months and then years that followed, my list of rehab goals seemed endless.

I wanted to walk without falling down or walking into things; to consistently be able to feed myself, speak in full sentences and tie my own shoe laces; to read without struggling and then to actually remember what I read; to accurately add, subtract, multiply and divide and not draw a complete blank when I saw the number 0; to concentrate at least long enough to use the phone. (“Press one for customer service. Press two to place an order…); to understand the evening news; to stop getting disabling dizzy when I moved my head; to once again sing loudly and off key to Bruce Springsteen’s Rosalita; to return to approaching conflicts diplomatically and solving problems creatively and perhaps most of all, I longed for the return of my sense of intuition, without which I felt as if I were seeing the world in only black and white.

When I finally gave up the delusion that I’d be back to “normal” any day now (and then any month now), I wanted to recover emotionally as well by finding a way to accept and integrate the new realities of my life.

The eternal optimist in me told myself I’d be such a better social worker because of this experience and that the good thing about everything being hard was that every activity was rehabilitative.

Sometimes I even believed me.

A team of eager and talented rehab professionals worked with me on all of those goals and more. With their help, I worked to retrieve lost knowledge, relearn skills and develop strategies to compensate for my deficits. But forever complicating the rehab process was a persistent and pervasive cognitive fatigue that to a large extent continues to limit my life and control my choices.

Cognitive fatigue is the “jargon” professionals use to describe what happens when our brains get tired and the supply of neurochemicals is significantly depleted.

When your brain injury symptoms include cognitive fatigue, you will be differently able at different times and in different situations. When our brains are well rested and the environment we’re in isn't overly distracting, we function at our peak. When our brains are tired most of us function significantly less well, which means one day we may be quite capable and the next, barely able to take care of ourselves.

The truth is the experience of living with a brain injury when your brain is well rested is completely different than the experience of living with a brain injury when you’re fatigued.

Don’t get me wrong, they both suck, but one sucks a heck of a lot more than the other.

The Dog Days of Summer

It’s been a long difficult summer at our house and not just because the heat and humidity have been so bad, each time I walk out the door the phrase “Is it soup yet?” comes immediately to mind.

Our first summer challenge was the absurdly long, painful recovery from the spine surgery I had at the end of April. To be honest, the recovery was as much from the injury I sustained a week after the surgery as it was from the surgery itself. Much to my dismay, I still have a long road ahead but I am indeed moving in the right direction.

But, more painful for me than any injury or illness from which I’ve had to recover, has been the last month during which my service dog Stone has been critically ill. It began in July with a severe GI problem that was eventually diagnosed as something called HGE. Each vet we’ve seen along the way has felt it necessary to tell me how often dogs die from this because they don’t get to the vet right away. Call me overprotective or hypochondriacal-by-proxy, but, we have a general rule at our house - whenever we see blood literally pouring out of our dog’s hind quarters, we rush him to the vet. Crazy us, I know.

The first two days he was at his regular vets with me laying on the floor next to him for much of the time. In the evening of day two, he was transferred to an acute care doggy hospital. While there, he was diagnosed with a heart problem they hoped was just a transient consequence of the physical stress of being so ill. It seemed the most plausible explanation to the abnormal EKG and ECHO cardiogram because at the end of his very thorough vet exam in late April, his vet said Stone was so healthy he was 2 – 3 years younger than his chronological age.

My Mom’s intuition had actually picked up the heart problem on Thursday morning before the vets even did, but they thought his pulse was fast just because he was in pain. Unfortunately, it was a lot more complicated than that. As it turns out, sometime’s Moms do know best. (Editorial note: if anyone tells my Mother I wrote that, be assured, I will deny it.)

His GI problem has since cleared up but sadly, his heart problem remains. After two trips to a doggy cardiologist at Ohio State University’s Vet Clinic, Stone’s been diagnosed with something called Dilated Cardiomyopathy. Apparently, it’s genetic but it doesn’t express itself until adulthood. The GI illness was the catalyst that kicked it off.

It will lead to Congestive Heart Failure. How quickly that will happen is unclear. The OSU vet’s best I’ve been doing this for a long time guess is that it won’t be for 6 months. It could be longer or shorter; I vote longer.

This week the vet started him on meds that have been shown to be cardioprotective and, as per the vet’s recommendation, we’re switching him to a special food made for dogs with specific heart problems. The food contains all the natural supplements I’ve been reading about on wholesitic vet websites, much to Stone’s relief, as he wasn’t looking forward to Mom force feeding him all kinds of weirdo-hippy-supplements that undoubtedly come in horse pill size capsules. The hope is that the meds, natural supplements and special food will slow down the progression. Sometimes they do and sometimes they don’t. The vet can’t really predict life expectancy until we see if Stone responds well to them.

Happily, we have a lot of things working in our favor. The OSU vet is apparently one of the leading doggy cardiologists in the country. He has the wisdom and intuition that come from years of experience and because he’s a professor as well as practicing vet, he’s up on all the latest research findings. In addition, we caught it at the very earliest stage which increases the likelihood the medication will be helpful. Plus, the bond Stone and I share is so strong I will hopefully notice the onset of new symptoms, warning signs or medication side effects when they occur. The vet said Stone will need frequent vet appts and regular EKG and ECHO cardiograms to monitor progress so he can make appropriate medication adjustments. Clearly, I’ll make sure he gets all of those. In the vernacular of health care professionals, we will be VERY compliant patients.

On top of all of that, Stone has a very special factor working in his favor. As soon as we get the results of his Holtor Monitor (24 hour EKG) and they decide if he needs medication for an irregular heartbeat, he’ll be cleared to resume his out and about with Mom ‘cause she needs my help life. Even now, I keep “accidently” dropping things on the floor and need him to pick them up for me. Certainly having purposeful activity has been shown to extend healthy years in humans, so perhaps it’s the same for dogs. I’m hoping it is.

He does have some activity restrictions and because he’s my service dog in addition to being a cherished member of the family, that means I have some activity restrictions. Sadly, his restrictions include no more running, which is breaking my heart because watching him run, whether its chasing a ball or running round and round in those wide circles he seems to love, is one of the greatest pleasures in my life - pure unadulterated joy. But, we will find new ways to play ball to be sure, as it’s been his obsession from an early age. Also, he can no longer power walk or go hiking in the mountains, which means I can no longer do those things or if I chose to do them, I run a greater risk of getting hurt without my brilliant service dog there to keep me from losing my balance and falling or misjudging distance and walking into or tripping over things.

Anyone who’s ever loved an animal has some sense of how I feel as I deal with the reality of Stone’s failing heart. Anyone who’s ever met Stone knows how special he is and anyone who’s ever seen me with him or heard me talk about him, knows how much he means to me. Anyone who has a service dog or who spends a lot of time around service dog “teams” or who has heard or read our story has a clearer understanding of the impact this is having on my emotions and my life. And, most of all, the people who have seen the before and after, who remember how impaired I was before Stone spurred on my post brain injury rehabilitation and who are able to contrast it to the life I am living now, well it’s those people who, most of all, truly understand why Stone’s failing heart is breaking mine.

I was partnered with Stone 5 + years after an auto accident left me with a brain injury. In the years that followed my accident, as is too often the case, I sustained additional, less severe brain injuries, and countless bumps, bruises and sprains, because of my impaired balance and depth perception. When I moved to Cincinnati to be closer to family I had to give up my beloved dog Puff, the third Weimaraner I’d had since I was 5 years old.

It was my friend Heidi who first suggested I apply for a service dog. Although I didn’t tell her at the time, frankly I thought she was whacky. (Those of you who know Heidi, know she is in fact whacky, in all the good ways, but in this particular situation, she was actually not being whacky at all.)

At that point in my recovery, I had enough insight to understand that I did in fact have a disability but, service dogs, I reasoned, were for people who have capital D Disabilities and I was quite certain I had a little d disability. I shared Heidi’s idea with my Rehabilitation Psychologist, expecting, (hoping actually), she too would scoff at the idea. She didn’t. Instead, she did that annoying psychologist thing and asked me how I felt about that idea. (Don’t ya just hate when people make you think for yourself.) I told her my theory about little d disability and capital D Disability.

Again, she prompted me to think for myself (annoying!) reflecting back to me the reality of my life as it was then. She said something to the effect of, “Okay, let me see if I understand. When you leave your home you are mostly in a wheelchair. You can walk about as far as the end of the block, not around the block mind you, just to the end of the block. But even that isn’t safe for you to do alone as you too often fall or trip. You haven’t been anywhere outside of your home by yourself since your injury, because it’s not safe for you to go places alone and you have a live in care giver because your balance and depth perception problems leave you at great risk for falling and, when your brain is cognitively fatigued, your judgment is so impaired you sometimes make risky choices so it’s not particularly safe for you to be alone even in your own home. If that doesn’t fit your definition of a capital D disability, I’m wondering what would.”

Point taken.

Flash forward to today. I can not only walk to the end of the block, (when I’m not recovering from spinal surgery that is), Stone and I walk several miles nearly every day. We even go hiking in the mountains on trails marked “difficult terrain”. After years of never going anywhere by myself EVER, Stone and I take the bus, we go to stores and the library and the post office and the park and restaurants and the movies… I never knew how exciting these ordinary, mundane, daily tasks could be.

Not long ago, while waiting at the bus stop with Stone, an old friend drove by and waved. The next time I saw her, she said she wished she had been going in the same direction as we were, so she could have saved me from having to take the bus. While I appreciated her kind intentions, in my head I was saying, “Saved me from HAVING to take the bus??? Try - I’m doing the dance of joy because I’m ABLE to take the bus.”

Because of Stone, not only have I built up the capacity to walk and hike and lift weights and take the bus and, thanks to his help, actually remember to take my medication on time, I’ve also been able to return to doing volunteer work, using not only the skills and experiences my social work background provides, but also utilizing the lessons I’ve learned the hard way from being the client instead of the social worker during these last 15 post brain injury years. When I’m facilitating a support group for brain injury survivors, or speaking at a brain injury conference or providing on-line, in person or on the phone support for a person with a brain injury or someone who loves a person with a brain injury, my own brain injury is actually an asset, because I understand in a much clearer way now. It’s the one area of my life in which my brain injury is value added.

I, as well as anyone I’ve helped along the way, have Stone to thank. It’s because of him that my recovery has been so remarkable I am now able to give back in those ways.

Stone hasn’t just improved my life, Stone has given me a life.

I’m feeling quite nostalgic these days about all the ways Stone has been of service. In the weeks and months to come, I have no doubt that I’ll be blogging more about Stone and our journey together.

I feel so privileged to have this truly extraordinary dog in my life and I’m incredibly grateful that we will have more time together during which I will soak up and relish every ounce of love he has to give. As time goes by, I will become more and more his service human and believe me, I am more than happy to return the favor.

How I'm doing - You may be sorry you asked :)

First, I want to say thank you so much for all the well wishes, prayers, positive thoughts sent out to the universe and love coming my way over the last month. I thought this might be the simplest way to answer all of the incredibly thoughtful inquiries about how I’m doing, how the surgery went etc.


The surgery went really well, the hospital stay, not so much.

The day before surgery, my case manager, Stacy, and I met with an anesthesiologist/member of the hospital’s pain management team. He spent about 40 minutes with us, talking about medications I’ve used in the past that worked well as well as those that didn’t and about all the ways my brain injury complicates decisions about anesthesia and pain medications. Together, we created a Plan A for drugs he’d use during the surgery and a Plan B if he needed to add more.

In terms of post surgical pain management, while he was very skeptical that the relatively low dose of Demerol via a patient controlled IV Pump that had worked well for me in past surgeries would be enough pain medication for this particular surgery, he agreed to write orders to start with that, but then also wrote out a Plan B in case he was right and Plan A was not enough to control the pain. He reminded me how pain interferes with healing and made me commit to letting them know if I needed more pain relief even though he understood that I tried hard to avoid taking a lot of pain medicine because it’s so tough on my brain injury symptoms. He explained that the hospital very rarely uses Demerol via the patient controlled pump because it usually isn’t strong enough to control post surgical pain. I explained that I’d had cervical spine surgery a few years ago and a hysterectomy a few years before that and I did great on a fairly low dose of Demerol and surely, I said, this surgery couldn’t be more painful than those. His skeptical chuckle foreshadowed things to come. But I assured him even before my brain injury I was always a cheap drunk and my case manager assured him I had a bizarrely high pain tolerance and so he agreed to start with Demerol.

We were both incredibly impressed on so many levels. First, here was an anesthesiologist with a good “bedside” manor. We thought that was still illegal in most states. In addition, this hospital had a team of doctors who were responsible for pain management, rather than leaving it up to the surgeons. Given the reality that both anesthesia and narcotics effect people with brain injuries more significantly, we were both relieved that this part of my care would be directed by experts. Further, I felt much less stressed knowing that before I even was admitted to the hospital, while I was still able to think clearly and communicate well, I was able to have a detailed conversation with a pain management specialist and there was now a detailed written plan of care in my chart about what drugs to use and what to add if necessary. I didn’t have to worry about trying to understand and communicate once I was drugged up, which is no small feat for my injured brain. All I would have to do is let someone know if I was in pain and it would be taken care of in the way that would take the least toll on my brain. Huge sighs of relief all around.

But, that was on paper. Sadly, that’s not remotely what happened in the real world.

When I woke up in recovery, the severe leg pain that had been debilitating pre surgery, was completely gone. The surgeon had said that this was a remote possibility but that it was more likely it would take a few months to go away. I was doing the dance of joy. Okay, well, I couldn’t really move at that point, but my eyes were doing a happy jig to be sure.

While the leg pain was gone, my back hurt like a son of a b##ch, (almost as if someone had surgically opened me up, moved stuff around and taken stuff out. H’mmmm.) Soon it became apparent that the pain management guru was right, this low dose of Demerol was not cutting it. I was in a lot of pain and it was getting worse. When my case manager realized I was pushing the heck out of that pain management pump button she and I agreed I needed to ask for more pain meds. I did. That was sometime between 12:30 and 12:45pm.

Just a few minutes shy of 5:30 in the afternoon, they finally increased my pain medication. Yep that’s right folks. I started asking just after 12:30 and a mere 5 hours later they acted on that request. Let me clarify that, 5 hours later the doctors finally acted; the nurses had been relaying my requests (my requests, Wood’s requests, Stacy’s requests) all day long. By the time the pain management team increased the Demerol, my requesting had turned into begging and here I was, this person who just the day before had been described as having a “bizarrely high pain tolerance” was literally sobbing from pain. At that point, even the nurse had tears in her eyes.

By the time the increase in pain medication was “on board”, I was so tensed up from pain that my entire body went into what felt like one huge “charlie horse” which would take several days to completely go away and interfered with my ability to get up and walk, thereby slowing down my discharge by a couple of days. At one point they were thinking of transferring me to a rehab hospital rather than sending me home since my muscles were in such spasm I couldn’t stand, but thankfully, they didn’t think of that until Friday afternoon which meant it would have to wait until Monday. By the time Sunday evening rolled around my muscles had calmed down enough to allow me to walk with just one person assisting and they sent me home.

To add to the pleasure of that first day, the surgical residents, who weren’t in charge of pain management and apparently didn’t take the time to find out I was on a baby dose of pain meds, would pop in every so often to tell me I was being a whimp. That was so very helpful. (“Thank you sir. May I have another?”)

There was some comic relief however. Every time I turned on the TV with the hope of distracting myself from the severe pain in my back and the massive all body charlie horse, the hospital channel was on and a video about pain management was running on a continuous loop – how the hospital takes pain management very seriously, that it’s a top priority, spelling out patients rights when it comes to pain management which included having their complaints of pain responded to immediately etc etc etc. I felt as if I were in a TV sitcom world that only Larry David’s comedic genius could devise. I could have been George in a Seinfeld episode but I was hoping to be living in a Curb Your Enthusiasm world, because in those Larry David gets to unleash a barrage of obscenities at his antagonist whenever the thoughts pop in his head.

The next day, a pain management Attending Physician, with two residents in tow, appeared explaining that they rarely use Demerol on a pump and so there had been some confusion about how to increase my dose. He told me that at 5:30 the previous afternoon, when they finally had come to increase my pain meds, they had merely increased the Demerol dose which he could see was clearly not enough to enable me to get up and walk . So, they finally added a second drug and while they were not quite apologetic, it was clear that the Attending at least understood that someone had dropped the ball. I didn’t ask why they hadn’t just followed the plan that was in my chart because, call me crazy, it’s my personal philosophy that when one is in tremendous pain, it’s counterproductive to alienate the people who are the keepers of the pain relief. Thankfully my impulse control was able to keep the Larry David Curb Your Enthusiasm style monologue that was playing in my head from spilling out.

Then there was the breathing. Now I know what you’re thinking: good golly this woman is demanding. First she wants to not be in excruciating pain and now she wants to breath, what an overly developed sense of entitlement she has. It’s true – I can be so darn demanding.

While the hospital TV channel didn’t seem to have a video about the hospital’s policy regarding breathing and while I did not check the hospital’s Patient Bill of Rights to see if breathing was included, I feel confident going out on a limb here and saying I’m guessing the hospital is in fact in favor of their patients breathing. I would even venture to say that enabling their patients to breath is, in all likelihood, a hospital priority.

Soon after I was transferred from post-op to my room, a Respiratory Therapist came in and listened to my lungs. She said they sounded clear and in spite of the facts that I have asthma and that I’d been under general anesthesia for nearly 3 hours, she said I didn’t need to use my inhalers or even an Incentive Spirometer, which is the little thingy you breath into every hour after surgery to make sure you continue to expand all of your lungs when you breath and that fluid does not collect in them, both good goals in my book. By that night, I was coughing and you could hear the fluid when I coughed and even more alarming, each time I dosed off I woke up gasping for air. Again, I know picky picky – I want to be able to breath and sleep simultaneously. But, being the overly demanding person that I am, I buzzed for the RN and asked her to call the Respiratory Therapist.

The same Respiratory Therapist came in, listened to my lungs, verified that there was in fact fluid in there and that my lungs were not fully expanding when I breathed. Oddly, she said I still didn’t need to use my inhalers but she did bring in an Incentive Spirometer. The next night, the coughing and gasping for air when I dozed off continued but by now I was wheezing loudly and I could feel that I was only using a fraction of my lungs when I breathed. I again asked to see a Respiratory Therapist. This time I was told she’d already been here and that I should just use your Spirometer. Sometimes my stubborn streak comes in handy, so I continued to ask “Is there an RT in the house? I need to see one.”

Thankfully, a new RT was on duty. She listened to my lungs, which she verified were quite filled with fluids. She quickly put me on oxygen, did a nebulizer-ish treatment and had me use my inhalers. When she was done and read the last RT’s notes, she was, shall we say surprised, to see the last RT had heard fluid but had chosen not to do anything about it. Keeping with my TV show frame of mind I thought that perhaps I was now in a Grey’s Anatomy episode and the previous RT and the Pain Management Residents were distracted because they were in a love triangle that was coming to a head. I wondered if I should at least try to brush my hair in case McDreamy stopped in for a visit.

On the positive side of life at the mercy of University Hospital, as always, Stone was treated like a rock star. He was clearly distressed that the rails on my bed were a barrier to him comforting me to the extent he wanted to, so we let him up on the bed by my feet. He let out a huge sigh of relief when he laid down and snuggled in with me. But, when the pain got so bad I began moaning, he jumped off. The Nurse thought he was worried that he was causing the pain. I didn’t have the heart to tell her I was pretty certain my moaning was interrupting his napping.

When Stone got off the bed, the nurse left and came back with a huge pile of sheets and blankets. I was alarmed at the thought of being rolled around while they put new sheets on the bed as rolling on my side was excruciatingly painful. Have no fear, this comfy pile of linens wasn’t for me. She used them to make a thick comfy bed for Stone. When she was done, she analyzed her work, decided that it just wasn’t quite cushy enough for a dog as spectacular as he, got out two pillows and placed them just so on Stone’s new bed. He climbed in and was a happy camper.

I did have lots of good TLC while in the hospital. Stacy, Wood, Marianne and Ann Marie took great care of me. Ann even had a sleep over with me the second night I was there although she refused to let me put her bra in the freezer.

The first several days home went well although there was some confusion over my activity level. The surgeon’s instructions were to take several short walks each day. The Occupational Therapist who came on day 4 was frankly startled when I told him how far I was walking 4 times each day. He later measured it and it turned out I was walking over half a mile 4 times a day. He called the surgeon to clarify the instructions. It turned out the surgeon’s definition of “short walk” means walking the length of my driveway.

Oops. When the OT explained this to me I was clearly dismayed to which he replied, “Tina, if had just had major lumbar spine surgery, I wouldn’t leave my house for a month and I sure as heck wouldn’t be walking more than two miles every day after just coming home from the hospital. I’ve been doing this kind of work for a long time now so I feel confident in saying, I think that’s how most normal people would react.”

I was frankly confused. It did not compute, but then my niece reminded me of a truth she learned about our family when she was about 10. While at the grocery, she longingly stared at the Wonder Bread and asked her Mother “Why can’t we ever buy white bread like normal people do.” Her Mom explained “Leilah, you might as well learn this now – no one in our family has ever aspired to be normal.” Those of you who have known me since we were teens will attest to the fact that I internalized this family rule at an early age. 

During that first week home from the hospital, when my Rehab Doc who has treated me in the 15 years since I sustained my brain injury, called to check up on me, I told him I was still having a lot of muscle spasm but that we think we had figured out why. All I needed to say was “the surgeon’s discharge instructions were that I should take several short walks every day.” Under his breath, barely audible, I heard him say, “Oh no…”. He knew what was coming. He, who has said probably hundreds of times to me and about me “limit setting is really not her gift,” and “her approach to recovery is that if doing something a little is good then doing it a whole lot more must be a whole lot better”, knew that my idea of a “short walk” and of “several” times a day was bound to be grossly out of synch with the surgeon’s intentions. Hey, at least I’m consistent.

While I do concede that my idea of a short, post lumbar surgery walk, may have been excessive, in my defense, who would say “I went for a short walk” when what they really did was walk to the end of the driveway to get their mail. I think the real question is how sedentary does this surgeon have to be that to him, every time he goes outside to get his newspaper in the morning he thinks he’s going for a short walk. Heck, the typical daily walk Stone and I take would be an Olympic marathon event to this guy.

Once I had a clearer understanding of how much activity I was suppose to be doing and more specifically, once my Rehab Doc took over, giving me clear and concrete instructions about what I was and mostly, was NOT allowed to do, things got back on track so much so I was taking only Tylenol for the pain. Sadly that’s when I made a grave mistake for which I’m still paying a hefty price.

My guess is I’m not alone when I say that whenever I ignore my own instincts, whenever I don’t listen to my little inner voice sounding the warning alarm, it does not turn out well. Sadly, I re-learned that lesson about 10 days after surgery. The Home Care Physical Therapist had me doing an exercise that involved partially standing on a telephone book. It seemed unsafe to me in general, given that the binding on phone books can easily curl or bend and it seemed especially unsafe for me given my problems with balance. I voiced my concerns but she assured me it was completely safe. I ignored the red warning flags I saw waving in my mind, and followed her instructions. (Heaven forbid I let a complete stranger think I was a non-compliant patient. It’s much better to ignore my own well developed sense of what is and isn’t safe for me than to let this person I’d just met and would likely never see again once my Physical Therapy was over, have a negative opinion of me. ) Sometimes it amazes me how many times in our life we have to learn the same life lesson.

So, the phone book’s binding did in fact curl and the phone book gave way and I fell. I landed on my feet, HARD, and while it wasn’t a long way to go, apparently my newly operated back didn’t enjoy the journey or the landing. After I got over the initial blinding pain, I realized the leg pain was back. Sadly, it still has not gone away. The doc did order an MRI to make sure I hadn’t re-herniated the disc, which I didn’t – huge sighs of relief. It did show the remnants of a bleed so they think that I tore some scar tissue which caused the bleeding and that the scar tissue stretched the nerve which is causing the leg pain. Apparently the leg pain will go away once the nerve heals.

As a result of my little mis-adventure, my rehab doc sent me back to bed and instructed me to go back on the Demerol round the clock in an effort to stop the pain so the communication between the nerve and my brain doesn’t get stuck in the pain mode. Yes I know there are lots of folks who would love to have their doctors order them to stay in bed, take drugs and watch TV. It turns out I am definitely not one of them. As of yesterday, I am now allowed to walk the driveway three times a day an increase from last week, (wow living large) I am still not allowed to sit down, twist, bend or squat, I have to continue to take Demerol and spend the vast majority of my time laying in bed. I made sure he understood that I am in fact on the verge of taking hostages, but he seemed unimpressed and still wouldn’t release me from my bed arrest.

And so, here I lay, entertaining myself by answering your “how’s it going?” inquiries with a whole lot more information than you needed or wanted. You can chock it up to too much Demerol and too little to do. Poor Stone is pretty bored but he is getting a whole lot of Mommy cuddles.

Again, I so very much appreciate all the love that you’ve been sending my way. It’s meant a lot to me.