Wednesday, November 23, 2011

Feeling Thankful When Things Suck

Sure, I'm looking forward to Thanksgiving this year.  Last January, in lieu of New Year's Resolutions, I dubbed 2011 "The Year of Awesome".  Finally, a year that didn't involve rehab/needles/surgery/medication/feeling like a burden.  And it truly has been an amazing year; my book came out in March, we had a wonderful family trip in May to Disney World, we got to enjoy a fun but busy summer, Steve loves working for himself, and so far it's been a terrific school year for Jason.  There were countless special moments over the past 11 months, and it's shaping up to be a memorable holiday season.

However, I know this has not been an awesome year for lots of people.  Among those close to me, I have a long-time friend who has battled breast cancer, and another close friend suffering from serious immune deficiencies.  The children of another dear friend are struggling with anxiety issues, and a new friend has just started a 6-month chemotherapy regimen.  Yet another friend is coping with some lingering, bothersome after-effects of a stem cell transplant, and still another is caring for both of her ill parents in her home.  And these are just a few of my closest friends; there are countless others I feel a deep connection to through the amyloidosis support groups, both on- and off-line.  I can see from the emails flying back and forth that many have just been diagnosed, or have a spouse or loved one who has the disease.  Many are just beginning their treatment; various chemotherapy protocols or a full-on bone marrow transplant.  Dealing with fear, concern and ill health, it can seem impossible to feel thankful at this time of year.

Having all my own crap behind me doesn't make it any easier for me to relish a stress-free long weekend with my family, skip while doing my holiday shopping, or sing along to holiday music as I cook and wrap gifts either.  I can't stop wondering what I can possibly do for these people so dear to me and close to my heart.  How can I help?  Sure, I can deliver a meal, spend an afternoon, lend out some relaxation tapes or share tips that worked for me while I was going through a similar challenge.  But I wish I could just wave a magic wand and "make it all better". 

The one strategy that keeps coming to mind over and over again is to be thankful for what IS working; to feel gratitude for what IS going right.  At my lowest points, I would try and shake myself out of a slump and remind myself of everything I appreciated:  the best doctors, an effective treatment, generous family and friends, health insurance.  On a lighter note, but no less important:  extra time to read some great books,
a husband who knew how to turn on the oven/vacuum/iron, a kid who was willing to help a bit more around the house for a reasonable allowance.  It took practice, but eventually I developed a habit of "changing the channel" from gloom and doom to the glass being half full, at least for a moment.  No sunshine and rainbows, but over time the cumulative effect of shifting my focus from negative to slightly more positive gradually helped me believe that I did in fact have so much to be thankful for.  And there is scientific proof that the placebo effect can have a measurable impact on physical health.  Just yesterday, I opened my new issue of Women's Health to see an article on the topic (check out the December issue, p. 128).  If believing a "fake" pill or substance can improve one's symptoms, then what are the possibilities when one truly believes that real medical treatment will be successful?

I wish I could rent out my husband to lighten up doctor visits.  Not even the most stoic patient would be able to keep a straight face while Steve inflated surgical gloves, impersonated a naughty nurse, or made up his own medical vocabulary (don't try and find the term "schnarfalate" in the Webster's Dictionary).  When so much seemed so very unfunny, finding a little bit of humor at unexpected times was a welcome relief.  There's been a lot of research showing that laughter has a therapeutic effect in lowering stress hormones, which in turn has health benefits.  Sometimes I needed something a bit more potent than Steve, and that's when I'd turn to Netflix for "The Hangover", "Harold & Kumar" or "Knocked Up" for some laughs!

Back to my special friends facing their own personal challenges...thankfully my friend's breast cancer treatment was a success, she's feeling great, the prognosis is good, and I'm thankful that every now and then she and her family come into town for a visit.  I am grateful that a monthly treatment exists for my friend's immune condition, and so glad that I live close enough to be able to spend the afternoon with her the following day.  I'm thankful for the team of professionals available to my friend's children, and am confident that they will flourish.  I'm so glad that my new friend's oncologist is optimistic and reassuring about the treatability of her condition...I don't think doctors say "You're going to be fine!" if they didn't believe it.  I know my other friend is in good hands post-transplant, and while it may take longer than she'd like to fully recover, I'm grateful she is improving every day.  I'm so thankful that my friend's husband is incredibly supportive of her and fully involved in caring for her parents, and I'm glad that with the help of other family members she is able to take frequent breaks to recharge.  Whenever I see an email from a new member of the amyloidosis support group introducing themselves, or announcing the recent diagnosis of a spouse or family member, of course I wish they hadn't received this news.  But I am also thankful that they were successfully diagnosed; I'm grateful that someone along the way knew what to look for and requested the proper tests.  I'm glad that somehow they were referred to the group for information, support, and guidance, and also thankful for my own experience which allows me to be helpful.  I'm happy that they can now receive answers to their questions, and the treatment they need.

The collective feeling of thankfulness throughout the country in the course of a single day is what makes Thanksgiving so meaningful.  It's a designated day on the calendar in which we can teach our children to appreciate the food on the table, the roof over their heads, the toys that they own, the freedom that they enjoy.  But what could be more powerful than teaching them that there is always something to be thankful for, all year round, even in the most challenging of circumstances?  What if we were able to find something to appreciate every day of the year?  What if we not only expressed our thankfulness over one November dinner, but at every meal, in good times and in "not-so-great" times?  Once we've mastered an "attitude of gratitude", why not pass it down to the next generation?

Monday, November 14, 2011

Mommy's Superpowers Charleston, S.C.!

I received a wonderful surprise in my inbox today via Google Alerts:  Terri McDougal, a librarian in Kanawha County, is well aware that in addition to all the kids looking for the next Harry Potter, Diary of a Wimpy Kid and Captain Underpants, there are plenty of children coping with some very difficult life circumstances.  Specifically, Ms. McDougal recommended my book, Where Did Mommy's Superpowers Go? for her patrons facing a serious medical crisis, and looking for a positive resource to communicate this challenge to their children.  I have never met Ms. McDougal and have no idea how my book landed in her hands, but I am so appreciative and grateful for her support of the book!  Not only does she recommend the book to children coping with a seriously ill parent or family member, but spoke specifically to the fact that my book is not specific to any particular disease, so can be helpful to any family going through any type of health crisis.  To read the full article, please click right here:  Library Offers Unconventional Kids' Books

Now I'm going to try and send her a thank-you note! :)

Friday, November 11, 2011

Helping a Brain-Injured Person - Part One

About a month ago I was at our local coffee shop ordering a latte when I noticed a book displayed on the counter.  Pieces Missing: A Family's Journey of Recovery from Traumatic Brain Injury was written by Larry C. Kerpelman, Ph.D., a local author who was a regular customer at the Boston Bean House. I liked that Dr. Kerpelman was also a fellow independently-published author like me, and read that he and his wife, Joanie, lived just minutes away in Acton, my home-town. But what really grabbed my attention was the subject-the story of his wife's traumatic brain-injury and how their family coped with this unexpected crisis. I immediately went home and sent Dr. Kerpelman an email introducing myself, describing the parallels in our stories, and inviting him to coffee. To my delight, he accepted my invitation, and I had the opportunity to meet both him and his wife Joanie, read his book, and hear him speak at a recent book-signing.

I could not put this book down...expertly and articulately written, this memoir reads like a gripping, suspenseful novel. Having been through my own significant health crisis, I could easily identify with Joanie's struggle to turn her frustration and disappointment into positive energy more conducive to her recovery, and was inspired by her determination and tenacity. Pieces Missing is not only the story of a family coming together in the midst of a crisis, but a touching account of a spouse being unexpectedly thrown into the emotional role of caregiver and patient advocate.  Dr. Kerpelman also shines a much-needed light on both sides of our health care system: the selfless, committed and most devoted medical professionals who heal and care for us, and the complicated, corporate infrastructure which often interferes. Most of all, this book is a tender love letter from the author to his wife, a true depiction of the wedding vows "...for better or for worse, in sickness and in health..."; a must-read!

After reading Pieces Missing, I thought of how challenging it must be for young children to be coping with a brain-injured parent or relative. In addition to those who suffer falls, auto or other accidents, there must be countless troops returning home from duty in Iraq and Afghanistan with similar injuries. I invited Dr. Kerpelman to write an article for this newsletter, and I was thrilled when he accepted.  This is Part I of a two-part article:

By Larry C. Kerpelman, author of Pieces Missing: A Family’s Journey of Recovery from a Traumatic Brain Injury (Two Harbors Press, 2011)

On a beautiful December day, as my wife and I were returning from our daily walk to our favorite coffee house, she got tangled in her shoelaces and pitched forward onto the asphalt roadway and lay there scratched, bruised, and bleeding. I took her to the emergency room where we were told that she had suffered a subdural hematoma, a traumatic brain injury (TBI).  With that, she became one of 1.7 million Americans each year who sustain a TBI – that’s one every 18-1/2 seconds. Although I had a passing familiarity with brain injury as part of my professional education, over  the course of three emergency room visits, two hospitalizations, and one brain surgery, I became much more acquainted with brain injury than I ever  expected to be.  The book I wrote about her injury and rehabilitation tells the story of how our marriage and family persevered and survived the biggest crisis of our lives and how the human spirit and love helped our family overcome this major health challenge.  
The National Institute of Neurological Disorders and Stroke defines a traumatic brain injury as one where damage to the brain results from a sudden physical assault on the head. That attack to the head may result in either a closed head injury (such as occurred with actress Natasha Richardson in her fatal skiing accident in 2009) or a penetrating head injury (such as occurred from the gunshot wound suffered in 2011 by Congresswoman Gabrielle Giffords). The NINDS further categorizes the damage to the brain as being either focal, that is, confined to one area of the brain, or diffuse, that is, involving more than one area of the brain. My wife’s injury was a focal, closed head TBI.
A traumatic brain injury can cause all kinds of problems—some temporary, some permanent—due to not only the broken blood vessels and accumulation of fluid in and around the brain the injury has caused, but also the damage to the brain’s neurons. Among these problems are head pain, confusion, lethargy, nausea, sleep disturbances, impaired attention, memory loss, speech and hearing deficits, emotional and behavioral problems, and seizures. Having incurred a moderately severe TBI, over the next several months Joanie experienced all of these problems except seizures, which were averted through the use of anti-seizure medication.  Injuries on the left side of the brain, such as Joanie suffered,  can impair a person’s understanding of language, speaking, verbal memory, logic, sequencing of activities and thought, and control over right-sided body movements. Those on the right side of the brain may cause impairment of vision and spatial sense, visual memory deficits, altered creativity and music perception, loss of “big picture” type of thinking, and decreased control over left-sided body movements. Diffuse brain injuries – those that are scattered throughout both sides of the brain -- can lead to slower thinking, confusion, difficulties in attention and concentration, fatigue, and impaired thinking in all areas. At more severe levels, a TBI may cause a person to lapse into a coma, a vegetative state, or even death. 
So what should you do when you encounter a person who may have suffered a head injury.  If he or she is unconscious, try not to move him or her – that may cause more damage.  Call an ambulance, as the EMTs are equipped to handle someone with a head injury, and the emergency room personnel can diagnose what the injury might be.  If the person is conscious and talking, take him or her immediately to a physician’s office or an emergency room so that they can render advice and a diagnosis.  Do not ignore the problem or have the person “walk it off,” as an undiagnosed brain injury can cause worse problems down the road if not treated.  Once a person is released from treatment or hospitalization for a TBI, he or she is unlikely to be back to their “normal” self without some type of further rehabilitation to restore the “pieces missing” that resulted from the initial assault to the brain tissue.
In the next installment, I will review some of the things you can do to help a brain-injured person’s rehabilitation.

Would you like to use this article for your own website or newsletter?  No problem!  But here's what you must include: 
“Larry C. Kerpelman is author of Pieces Missing: A Family’s Journey of Recovery from a Traumatic Brain Injury (Two Harbors Press, 2011). Dr. Kerpelman is a psychologist and award-winning health care communicator who never would have imagined his work would be inspired by experiences in his own family.  When his wife suffered a brain injury from a freak accident, the journey toward recovery took his family through the maze of a less-than-perfect healthcare system.  The book inspired by this experience provides a moving story of the endurance of the human spirit, combined with insights about brain injury and recovery and pointed questions about how our health care system functions. For more book details, please visit him on If you or someone you know would like to buy Pieces Missing, you may order it from ,,, or your local bookseller.”
Dr. Kerpelman will be speaking at Sargent Memorial Library in Boxborough, MA on January 24, 2012 at 7pm.


Fall Happenings

What a gorgeous fall we've been having so far! Except for the recent nor'easter, loss of power, downed tree limbs and rescheduled Halloween festivities, it's hard not to feel energized by the crisp temperatures, bright sunshine and colorful leaves (not to mention an extra hour of sleep recently!). Plus, the Macoun apples are out, our favorite!

While I do require a bit more coffee to get through the dark afternoons, it's a whole lot easier to get up with a bit of light shining through the window in the morning! That caffeine craving is so strong, in fact, I decided to turn my son into my very own Super Grande Venti Turbo Latte:

And he was quite's a little optical illusion!

My dear friend Kim Casto, whom I've known for over 13 years, is not only a super-highly trained Pilates guru, successful business owner, and devoted mom, but a generous supporter of her community who not only gives back, but makes it so fun people are lining up to join her! Her annual Pilates for Pink Fundraiser, held at her Pilates studio Bodylines, was a great success, and I was thrilled to be a part of it.

Just last week I was in Dallas, TX to see my friend Ali Brown in action!  I was there to attend Shine, an inspirational conference for women entrepreneurs created by Ali.  This was Ali's third event, and the first time I was able to experience the incredible energy of several hundred driven women focused on achieving success and reaching their business, family, and personal goals--all there for HER!  One of the highlights was meeting Nancy Traversy, the founder of Barefoot Books.  I was surprised to learn that Nancy lives about 15 minutes from me!  I introduced myself and gave her a copy of my book for her to show her editors (keep your fingers and toes crossed!).  But the real show stopper was Ali herself, who led most of the coaching sessions during the 3-day conference. 

For the past seven months, this blog and my monthly e-newsletter have been useful resources for families facing any significant health crisis, regardless of diagnosis. My goal was to share articles, tips, links, and other helpful information with anyone dealing with this challenge in the presence of young children, grandchildren, nieces or nephews. In this month's issue (and in the following blog post), I'm excited to welcome my very first guest writer, Larry C. Kerpelman, Ph.D., author of Pieces Missing: A Family's Journey of Recovery from Traumatic Brain Injury. 

In the first of his two articles, you'll learn what a traumatic brain injury is, what its signs and symptoms are, and how to help someone with this critical injury. Not only is this information helpful to those children coping with a brain-injured parent at home, but also for all of us who wish to find the right words to explain to our children how to empathize and interact appropriately and compassionately with anyone we may encounter with a brain injury or other disability. 

This article is also timely as it is Veteran's Day, a day when we must pause and acknowledge those who have voluntarily left their homes and families in order to protect our country.  We won't see another 11-11-11 in our lifetime, so it is a particularly significant day of remembrance and gratitude.  Let's hope that this is the year in which all our troops can finally come home for good.