Sunday, September 19, 2010

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?”


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.

Tuesday, September 7, 2010

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.

Monday, August 16, 2010

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.

Wednesday, May 26, 2010

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.

Tuesday, January 26, 2010

Being Kind to Yourself

As January comes to an end, if you’re like me, the enthusiasm and determination you had when you made your New Year’s resolutions may have dimmed a bit, now that you’ve returned to the harsh reality of your too often overscheduled, hectic, day to day life and once you’ve once again remembered the sad truth that bad habits are hard to break and healthy habits are hard to make.

As you take time out to reflect on the resolutions that you may have already broken, I’d like to suggest you add one more to the list of those you truly want to keep. Let’s all resolve to be kind to ourselves. As children we learned the Golden Rule: “Do unto others as you would have done unto you.” The truth is most of us are much kinder to other people, even strangers, than we are to ourselves.

When was the last time you said to someone, other than your own reflection, “Your butt looks HUGE in those pants” or asked someone who’s made a mistake “How could you be so stupid?”?

I propose we develop a Platinum Rule: Be as kind to yourself as you are to others.

The next time we look in the mirror and feel critical of our reflections, let’s change the way we see, not the way we look.

Let’s celebrate our victories and learn from our mistakes without judgment.

Think about how a child learns to walk. She stands and falls. Stands again. Takes one step and falls. It certainly doesn’t look like she’s berating herself. “How could I be so clumsy?” or blaming others “Hey, this floor is crooked.” She just adjusts her technique and tries again.

As most parents, grandparents, aunts and uncles have noted, there is considerable wisdom found in our children. They have an innate understanding that growth and learning only happens when they are willing to take risks. And yes, there is a learning curve and they will make mistakes and they will fall and maybe even get bruised, but that doesn’t stop them.

They merely pick themselves up when they fall or, when they don’t get their own coat on right the first time, they admonish their well intended parent who only wants to help with: “ME DO.”

Children make mistakes as they learn to walk, put on their own coats, tie their own shoes and feed themselves.  They make mistakes because they're human.  Now here's the big surprise.  You may want to sit down for this startling revelation:  we're human too and yes, we will make mistakes. If you're like me, you'll make lots of them.

And so, at the start of this New Year (I suppose this is really more the start-ish of the New Year rather than the actual start) I’m proposing each of us vows right now to adopt the Platinum Rule. I’m proposing each of us right now resolves to be kinder and more forgiving of ourselves and our mis-steps.

What do ya say? Are you with me