Tuesday, December 15, 2009

Turning the Holidaze into Holidays

Even those of us who love the holidays can, at times, become overwhelmed by what can sometimes seem like it’s frantic pace. It’s at those moments, we feel like we’re in the midst of the Holidaze.

As is true in so many families, family traditions play an important role in my holiday celebrations. Traditions are important. They help us feel like a part of something larger than ourselves. They help remind us of the joy we’ve shared and help us feel closer to the loved ones we’ve lost.

Some traditions are spiritual, such as attending services together as a family. Some are silly, like the tradition my brother Tommy started when he was a teenager and I was very young. One year he proclaimed, I’m sure in large part motivated by his never ending drive to entertain his younger sisters, that we all had to wear EVERY piece of clothing we got for Christmas. That year, so family legend goes, he wore 3 sweaters and 2 scarves to Christmas mass.

Some traditions are labor intensive like baking a gazillion kinds of Christmas cookies and some are simple and sweet, such as ending Christmas Eve with a reading of ‘Twas the Night Before Christmas or in my brothers’ families case, the annual reading of How the Grinch Stole Christmas because it has so many opportunities for silly voices.

While traditions are important it’s also important to consciously choose each year which traditions to follow and which to skip. As the circumstances in our families change from year to year, so too should our holiday celebrations. Whether it’s an aging parent, young adolescents who would rather “die” than spend time with their parents, recent divorce or remarriage, toddlers on the loose, hard financial times or a brain injury, from year to year, the make up of each family, it’s family dynamics, and the abilities, likes and dis-likes of it’s members change.

Our families aren’t static nor should our holiday celebrations be.

If, for example, you decide one year that “forcing” your teenage son to attend the church sing-a-long because you always go as a family, will be painful, for both of you, go without him. Giving yourself, and him, permission to skip that tradition this year, doesn’t mean he’ll never attend the church sing-a-long again. It just means he’s not going this year.

If, for example, you’re exhausted from caring for a parent or other loved one, maybe you can skip the gazillion Christmas cookies this year. Think bakery or store bought or, heaven forbid, slice and bake. Trust me, life and the Holiday, will go along just fine without your revered butter cookies, at least this year.

Sending Christmas cards feels like yet another burden this year? Send “Hope you survive the winter” cards in January when life slows down and the weather keeps us inside or how about Valentine’s Day cards instead, telling people how much you love having them in your life.

My brain injury has forced me to pick and choose which holiday traditions are important enough to me to expend some of my very very limited cognitive energy on. I’ve learned to spend time each December thinking about how much I’m capable of doing this year without exhausting myself and then decide which things to say “yes” to and which to say “not this year”. I remind myself that “not this year” doesn’t mean never again; it just means “not this year”.

Sometimes I need help deciding what I am and am not capable of doing, or more precisely, what I’m capable of doing AND enjoying. For the first several years after my injury, I followed some traditions because I USED to like doing them and post-injury, from year to year, I’d forget how exhausting they now were or how much the new me DIDN’T like them at all.

(Partly in the spirit of full disclosure and partly because I’m afraid my family might read this and “rat” me out, while I am certainly getting better and better at living within the energy limits my injured brain imposes on me, I still make lots of mistakes. As my Rehabilitation Doctor often says about me “limit setting isn’t really her gift”.)

I think too many of us uphold traditions year in and year out, just because that’s how we always do it, even though they no longer enhance our celebration or, given the reality our family finds itself in this year, just don’t make sense. These are the traditions that are more stress-filled than joyful.

You may be following some traditions you no longer like (or at least you’d like to skip them this year), because you think they’re important to your parents or your kids or your spouse. I have a shocking idea for you – ask them.

You might be surprised, and relieved, by their answer.

Every year, no matter how cognitively fatigued I am, there are two family traditions I always uphold. I never ever go to sleep on Christmas Eve without reading or listening to 'Twas The Night Before Christmas and on Christmas Day I always wear every piece of clothing I got for Christmas.

Here’s hoping we all have a joyful Holiday Season.

Thursday, December 3, 2009

Finding Balance After Loss

Today is the 3rd anniversary of my brother Tom’s death (or Tommy as he will forever be known in my heart). Anniversaries such as these are always difficult. They serve as painful reminders of the loss we’ve suffered. Intrusive memories flash through our mind, like videos we can’t turn off. Seemingly against our will, the scenes from that horrid day replay in our minds as we’re flooded with physical and emotional reminders of how we felt when the loss was so painfully new.

Anyone who has sustained a brain injury knows all too well how difficult anniversaries of significant losses can be. Those of us who’ve been down that road understand that the loss we’ve suffered is one of the most painful of all – we’ve truly lost a part of ourselves. We’ve lost the person we used to be (or at least parts of that person); we’ve lost the life we used to live and the future we never will.

In fact, nearly every brain injury survivor I’ve ever met knows the exact date of his/her injury. Even those of us who have problems with memory can recite that date. That’s something we can’t seem to forget.

I too know the date my life completely changed – June 26, 1995. After several years of painful June 26’es, I decided to “take back” my anniversary. I decided that each June 26th I would spend at least part of the day doing something I couldn’t do in the early years following my brain injury. It can be simple tasks like taking a bus or going to the grocery by myself or even doing the laundry or it can be something intrinsically wonderful like hiking on difficult terrain with the help of my ever faithful service dog, Stone. Whatever it is I choose to do on June 26th, I make sure I’m mindful of how spectacular it is and how grateful I am that I can now do so much more than I could do in the evening of June 26th, 1995.

In recent years my wonderful friend Mikki has also “taken back” the anniversary of her injury. Now, each year on the anniversary of the stroke she suffered during brain surgery while in her 20's, she celebrates the day she lived. Her anniversary has become a second birthday for her and she spends time marveling at how grateful she is to be alive. Those of us who have the privilege of knowing and loving her, are equally grateful.

This year, my family and I are “taking back” the anniversary of my brother Tommy’s death. In life, Tom made the world a better place in a big way, on a grand scale and he loved his professional “calling” but, above all else, Tom loved his family. He was the center of our family – the keeper of family traditions, the teller of family tales (and true to our Irish heritage, over the years, the line between family history and blarney added for effect became a bit blurred).

His death left a hole that can never be filled and certainly Dec 3rd will always serve as a painful reminder of that loss BUT, his children, Leilah and Ruairi, and his wife Debbie, are ensuring that Dec 3rd is also a day we remember Tom as the devoted family man and friend. (Although in Tom’s case the phrase “family man and friend” is a bit redundant as his close friends became family, not just to him but to all of us.)

Leilah, Ruairi and Debbie have planned the first annual Tom Mooney Day party for family and friends so we can come together and celebrate his unparalleled love of life, marvel at how incredibly lucky we all are that he was a part of our lives and feel grateful for the lessons he taught us about the importance of family.

In the days that followed Tommy’s death, Leilah and Debbie shared with me a book of readings their rabbi had given them. The final reading is about finding balance after loss.

“When balance comes, the memory of our time together will once again shine.

When balance comes, the weight of our time together will be an anchor to the time ahead.

When balance comes, we will embrace tomorrow, welcome laughter, rejoice in wonder, remember with joy.

When balance comes, the glow of memory will burn brighter than this flame of loss.”

Thankfully, my family and I are moving closer to finding balance

Wednesday, November 25, 2009

Giving Thanks

"Gratitude unlocks the fullness of life.
It turns what we have into enough, and more.
It turns denial into acceptance, chaos into order, confusion to clarity...
Gratitude makes sense of our past, brings peace for today and creates a vision for tomorrow."
-Melody Beattie.

Here's hoping for a thank-filled, gratitude inducing Thanksgiving

Friday, November 20, 2009

My Superhero Service Dog

One of the things I’m so grateful for is my brilliant and beautiful service dog, Stone. He gets to go everywhere I go, which often adds a whole new dimension to any activity.

Tuesday I had my annual colonoscopy and heck, let’s face it, there are few things that are as fun as spending a day living on Gatorade and cleansing out your colon followed by a day of being drugged while some guy sticks a large tube with a camera on the end up your “nether regions” as our grandparents might have said. :) But, at least I get to bring along my dog, which is a privilege few people can enjoy.

Not only is he great at distracting me from the stress at hand, my nurse is always extra attentive. In fact, every nurse on the floor is attentive, stopping by to see if I need anything and “oh while I’m here could you tell me about your dog.” While I know there is a nursing shortage, I’d never know it by the care I get whenever I’m in a hospital. Thanks Stone.

Just when I think Stone couldn’t amaze me more than he already has, on Tuesday at Christ Hospital, he amazed me yet again. While I was in the recovery room, the nurses brought a woman in to the bed next to mine. Our beds were separated by only a curtain. When her breathing became labored. Stone sat up, looked at me, then looked toward the woman’s bed. Next, he stood up and stuck his snoot under the curtain and then looked back at me, clearly distressed. Next, he looked at the nurses and was motioning his head toward the woman’s bed. He looked back and forth from the nurses to the woman until finally one of the nurses said “Look the dog is trying to tell us there’s something wrong.”

Now here’s the part that was kind of funny and kind of scary. Once the nurses figured out that yes, the woman’s breathing was labored, they tried to arouse her and couldn’t. By now, all of the nurses on the floor were there, but what they were talking about was how beautiful Stone was and how amazing it was that he’d alerted them, as opposed to talking about what to do about the unarrousable woman who’s breathing was labored.

I wonder if Lassie had these problems when Timmy fell down the well.

During my last colonoscopy, Stone provided some great comic relief. He was laying on the floor next to my bed in the recovery room. Apparently his tail was sticking under the curtain. A doctor came by to talk with the patient in the next bed and the patient interrupted him saying “dog’s tail”. The doctor, who clearly thought his patient was confused said “You’ve still got a lot of anesthesia in you, but we’re in the hospital and your procedure’s over.” Again the patient said “dog’s tail”. The Doctor said “I know you’re a vet, but you’re not at work today, you’re in the hospital.” This exchange went on for several moments until finally the doctor called over the nurse and said “he’s still really out of it. Call me when he’s more coherent.” With that, the doctor turned to leave, tripped over Stone’s tail and yelled “SHIT – there IS a dog’s tail.”

So, today I’m grateful that everywhere I go so goes my dog’s tail.

Saturday, November 14, 2009

Feeling Thankful

For the last few years, various people have nudged me to start a blog.  For me, this feels like the time to start, especially given that Thanksgiving is right around the corner, the season when no matter how complicated our lives become, we all remember to stop, take a moment and think about all that we are thankful for.

For me, it's a long list.  I have so much to feel thankful about, so many reasons to feel lucky.  For some, it may seem like an oxy-moron - a lucky brain injury survivor???  But the truth is I'm incredibly lucky.  My injury was 14 years ago.  For the first 6  of those years, I fell so often that to be safe, I needed someone at home with me 24/7.  When I wasn't home I was mostly in a wheelchair.  My rehabilitation goals were to consistently be able to speak in full sentences, feed and dress myself and accurately  make change for a $1 bill.

While I still need some support services and still have deficits , my life today is rich and full and more independent than I, my family and my enormously skilled and dedicated rehab. professionals would have dared to imagine.

I wish I could tell you I’ve discovered the secret to improving so much, that there was some formula I could share with other brain injury survivors. While I have, in fact, worked hard on my rehab and just as hard at dealing with the emotions that come with such a significant loss, to a large extent I think my “secret” is luck.

Yes, in the ever-expanding pool of survivors of brain injuries, I am indeed one of the lucky ones. I’m lucky in that the nature of my brain injury allowed for significant improvements and that much, although not all, of my brain damage is in the sub-cortical region of my brain (the part of your brain that’s not in charge of intellectual functioning). I’m lucky, too, that at Bryn Mawr Rehab Hospital I found a remarkable team of rehab professionals led by Dr. Richard Bonfiglio, an experienced and empathetic physician who never let any of us forget that this is my life and my rehab and continues to this day to remind me that recovery from a brain injury is a lifelong process. I was lucky to have found Dr. Marcia Hochberg, an inspiringly insightful rehab psychologist who, no matter how often I lose faith in myself, never seems to tire of reminding me of my capacity to cope. Luck helped me find a Vocational Rehabilitation counselor who saw me as a person rather than an open case file negatively effecting her success rate and who was able and willing to think outside the box. I’ve had the good fortune to find enormously empowering case managers from Plan of Southwest Ohio who have an unparalleled commitment to individualizing services and an uncanny ability to walk the line between empowering independence and providing help when needed. Thanks to the talented staff and volunteers from Circle Tail. I have a brilliant and beautiful service dog who keeps me from falling down, makes sure I take my medication on time, and cuddles me no matter how irritable I become. And perhaps most of all, I’m lucky to have family and friends who have been unwavering in their love and support.

Yes, I have so very much to be thankful for.

So, there it is, my first blog entry.  If you decide to read it once in awhile or subscribe, I promise to do my best to avoid boring you with the minutia of my daily life.