Yesterday morning, I posted this on Facebook:
"It was 20 years ago today, Sgt Pepper taught the band to play...
and in a few short moments on a highway in Philadelphia, I traveled from social worker to client.
It's been a VERY long time since the anniversary of my brain injury has bothered me, but I have to admit this one is. I need to actively remind myself that recovery is a life long process filled with 3 steps forward and 2.99 steps back, that while I routinely remind others to have realistic expectations for their recovery, I need to have more realistic expectations for my own and that even on the days my brain is most fatigued and I'm frustrated because I'm at my least functional, I am still a gazillion times more able than I was in the first year after the accident.
So today I will allow myself to feel badly for a bit and then I will take control of my anniversary and do something I wasn't capable of doing 20 years ago today."
My post was a way to remind myself it's ok to be sad AND (one of my very favorite words) that I was fluent in the strategies I needed to face the day. It felt sort of like someone publicly declaring they are giving up smoking or starting an exercise program; when you say it out loud you feel more committed.
And then, I went about my day.
First up, a Doctor's appt. I did a whole lot of seeing Doctors 20 years ago, so to differentiate those Doctor appointments from this Doctor's appointment, to remind myself of how far I've come, Rango and I walked up the 6 flights of stairs to his office. A far cry from the days of someone helping me into a wheelchair and then wheeling me to the bathroom. I was a bit winded by the time I got to the Sixth floor, but was beginning to feel strong.
Next it was on to my Mom's memory care assisted living facility. After a visit with her, during which I'm fairly certain she was more delighted to see Rango than she was to see me (and can you blame her), I met with a Palliative Care Nurse to develop a Care Plan. Now 20 years ago, I spent hours and hours talking about and thinking about Care Plans, but surreal as it seemed to me at the time, it was no longer my client's Care Plans I was discussing, it was my own. (My empathy for my former clients grew 10 fold during those Team Meetings, as I realized how bizarre it feels to be sitting in a room full of health care and rehab. professionals and YOU are the topic.)
But now 20 years later, I was paying it forward. Unlike that first year(s) after my injury, I was capable of fully participating in ensuring my Mom gets the supportive services she needs and able to think creatively to problem solve strategies to deal with the obstacles that arise. Those first years after my injury when I was adjusting to the reality that in all liklihood I would never have the cognitive stamina to be competitively employed, in many ways I felt lost. Being a Social Worker wasn't just my what I did for a living, it was who I was as a person. Today's meeting to design a Care Plan for my Mom was a concrete reminder that regardless of whether or not I have a paying job as a Social Worker, I am able and I am committed to strive to make a difference in this world.
By then, my exhausted brain needed a rest so it was on to mindless television until I had recovered enough to listen to my Survivors Playlist:
Reba McEntire's I'm Gonna Take That Mountain:
"I was born a stubborn soul.
Ain't afraid of the great unknown
Or a winding road that's all uphill...
I'm gonna take that mountain. "
Reba's I'm a Survivor:
"And though my life is changing fast,
Who I am is who I want to be...
A victim of circumstance.
The one who oughta give up,
but she's just too hard headed.
I'm a survivor.
Patty Griffin's I'm Making Pies:
"You could cry or die or just make pies all day.
I'm making pies."
Patty's I Don't Ever Give Up:
"But I don't give up, no, I don't ever give up
It's all I've got, it's my claim to fame."
Bruce Springsteen's The Rising:
"Lost track of how far I've gone
How far I've gone, how high I've climbed...
Come on up for the rising..."
And of course, the grand finale, the song I listen to right before every speech or presentation I give, the song that I play in my head when I feel a challenge may too big for me to face.
Sing along now:
"Oh yes, I am wise
But it's wisdom born of pain.
Yes, I've paid a price
But look how much I've gained
If I have to, I can face anything.
I am strong.
I am invincible.
I am woman. "
By the time I listened to the latter, I was in an Uber car headed back to my Mom's to see our favorite quirky music man, who comes to Arden Courts each month to entertain and lead a sing a long. I was in the back seat, head phones on, pumping my fist to the chorus: "I am strong..." As has happened on more than one occassion, I'm fairly certain Rango rolled his eyes at me and the Uber driver stole glances at me in the rear view mirror, slightly amused and perhaps a tad alarmed.
As my Mom and I sang along to songs she still knows by heart (and now unfortunatly not only do I know Ballin the Jack by heart, it's the ear worm stuck in my head,) I reveled in life truths that became so crystal clear to me over these past 20 years - the importance of simple pleasures, the value in striving for pleasant moments and the joy in human connection.
Those of you who know me well and know the limits of my cognitive stamina, can see in the description of my anniversary day's activities, that 20 years later I continue to struggle with living within the limits of my injured brain's very limited energy supply. I continue to be a work in progress.
As I rode home in an Uber car yesterday evening, I thought about my day and was pleased with how I'd done. I had allowed myself to be sad; I had been prepared for that possibility. I have to admit, I was taken by surprise by the flashbacks of the accident itself. (Before my mental health pro friends become alarmed, they weren't true flashbacks. I knew I wasn't actually back on that Highway. Clinically they were intrusive memories.) But I was able to note them and move on with my day, being intentionally mindful of all that I could do that would have been impossible 20 years ago, including using Uber by myself. I took time to remind myself of how amazing it was to be able to go places alone when for so long it wasn't truly safe for me to be in my own home alone. That is until there was Stone. With him I was never alone.
And then I opened Facebook.
When I posted my committment to myself this morning, my vow to allow today to have a balance of grief and positivity, I expected a few hang in theres, a prayer or two, perhaps a few posted hearts and maybe an I love you. What I found instead was an outpouring of love and support and community. I sat speechless, reading, tears rolling down my cheeks and felt my heart grow three sizes bigger. I felt physically lighter as if this community of friends and family were holding me up off the ground, holding some of my burden. I was reminded of the power of kindness and felt so incredibly blessed to be surrounded by such loving, giving, kind souls. I want each and every person who left me a Comment, who clicked "Like" on my Post, who left me a voice mail or sent me an email or text to know that you made a difference in the world, you made a difference to me. Your kindness mattered.
I am a true believer that like a pebble in a pond, each kind gesture has a ripple effect on the world we live in. Yesterday my Facebook family caused a tiddle wave of love and I am moved and humbled and emnormously grateful.
So today I am adding a song to my Survivor's playlist, inspired by the loving reminder from my family and friends that I am not alone on this journey, that there is a community of amazing people who are able and willing to lift me up when gravity seems too heavy to stand alone.
Christina Aguilera's Lift Me Up:
"If you life me up
Just get me through this night
I know I'll rest tomorrow
And I'll be strong enough to fight"
Showing posts with label Loss. Show all posts
Showing posts with label Loss. Show all posts
Friday, June 26, 2015
Wednesday, February 22, 2012
Coming Full Circle With Circle Tail
During the last week, while my service dog, Stone, underwent lumbar spine surgery, I thought a lot about how much he means to me and how he truly transformed my life. The truth is, I thought of little else. As I let out a huge sigh of relief when the surgeon came to tell me that in spite of his heart condition, he sailed through anesthesia without a hitch and that the surgery was a success, I immediately thought about how I couldn’t wait to tell Stone’s Circle Tail family who I knew were out there rooting for him.
As I sent Marlys Staly, Circle Tail’s Executive Director, (or Aunt Marlys as Stone refers to her), and the rest of his Circle Tail family an email update, I remembered a narrative I had written for Circle Tail a couple of years ago, when Stone was first diagnosed with his heart condition. As I am sitting here with Stone, once again happily taking care of him for a change, it seemed appropriate to share that narrative on my blog.
Coming Full Circle With Circle Tail
On a June evening, as I was headed home from work , I had an auto accident that left me with a traumatic brain injury and a life forever altered. For the first seven years, I was so impaired it wasn’t truly safe for me to be anywhere by myself, not even in my own home.
Because of balance and depth perception deficits, I frequently fell and walked into things, resulting not only in an abundance of bumps and bruises, but, on three separate occasions, new, less severe brain injuries. My memory was so impaired that even when I remembered to set the timer as a cue to take my medication, I’d all too often get distracted before I made my way to my pill box.
When not at home, I was mostly in a wheelchair.
I lost a lot that day in June - skills and abilities, memories and knowledge, my paid and volunteer jobs in human services, an active and independent life and eventually, my marriage. In an instant, my world became oh so small.
And then came Stone.
Stone is a long haired Weimaraner who came to Circle Tail when he was just 8 weeks old. While his two siblings were adopted out to loving homes, Stone was a star pupil in Circle Tail’s Prison Dog Training Program. Just shy of his 3rd birthday, Stone and I were partnered.
Because of Stone, not only have I left my wheelchair behind, he and I go hiking in the mountains. His assistance with balance and depth perception have empowered me to dramatically increase my physical abilities and endurance, which has, in turn, dramatically increased my cognitive abilities and endurance. Because of Stone, I’ve been able to return to social work, as a volunteer, helping other families whose lives have been altered by brain injury. Because of Stone, I once again lead a rich and fulfilling life. Because of Stone, my world is both bigger and brighter.
A lot of life and love have passed since that first December day Marlys introduced Stone and I. We are such a well tuned team now, it’s hard to even remember that for the first month, figuring out how to put on his harness was so difficult for me it took nearly 10 minutes every time.
Happily, throughout our time as a team, Circle Tail has been there every step of the way.
After we were partnered, Marlys helped us build on the skills Stone learned in Circle Tail’s Inmate/Canine Education Program in order to ensure Stone met my specific needs. Together we taught him to bring my medication to me when the timer went off and then to bring a bottle of water from the refrigerator. Whenever we’ve run into new challenges, Circle Tail has been there with new solutions. When I have questions or concerns or want someone to join our “victory dance” when Stone and I accomplish some new feat, Circle Tail has been there.
Stone and I are now facing an often overwhelming obstacle and true to form, Circle Tail is there. In July, Stone became critically ill with a gastrointestinal illness. While his GI condition has thankfully resolved, it left him with a serious heart problem. In those first few days, when Stone was so acutely ill, Marlys was on the other end of the phone helping me sort through it all and perhaps most importantly, reminding me to breath. Circle Tail’s Advisory Board was there as well. A Vet on the Board sent me information about Stone’s condition, written in a way we “mere mortals” could understand. And now that Stone is rehabbing from his illness and adjusting to his new heart medication and cardiac testing routine, Circle Tail is once again, joining our victory dances.
As time goes by, more and more I will become Stone’s service human. That’s just fine by me as I’m more than happy to return the favor.
As you can see, I owe Circle Tail more than I can ever hope to repay, so when they asked if I would speak at their annual Dinner, Art and Wine for Canines I was thrilled at the opportunity to give something back to this amazing organization that rescued my amazing dog who in turn rescued me. The event is March 3rd and I’ll be speaking about “Building a Life You Like Even When It’s Not the One You Wanted”.
Stone has indeed helped me build a life I like.
You can find out more about the event on the Circle Tail website: http://circletail.net/index.php?page=dinner-art-wine-for-canines-2. The deadline to purchase tickets is Feb 22nd.
Stone and I would love to see you there.
As I sent Marlys Staly, Circle Tail’s Executive Director, (or Aunt Marlys as Stone refers to her), and the rest of his Circle Tail family an email update, I remembered a narrative I had written for Circle Tail a couple of years ago, when Stone was first diagnosed with his heart condition. As I am sitting here with Stone, once again happily taking care of him for a change, it seemed appropriate to share that narrative on my blog.
Coming Full Circle With Circle Tail
On a June evening, as I was headed home from work , I had an auto accident that left me with a traumatic brain injury and a life forever altered. For the first seven years, I was so impaired it wasn’t truly safe for me to be anywhere by myself, not even in my own home.
Because of balance and depth perception deficits, I frequently fell and walked into things, resulting not only in an abundance of bumps and bruises, but, on three separate occasions, new, less severe brain injuries. My memory was so impaired that even when I remembered to set the timer as a cue to take my medication, I’d all too often get distracted before I made my way to my pill box.
When not at home, I was mostly in a wheelchair.
I lost a lot that day in June - skills and abilities, memories and knowledge, my paid and volunteer jobs in human services, an active and independent life and eventually, my marriage. In an instant, my world became oh so small.
And then came Stone.
Stone is a long haired Weimaraner who came to Circle Tail when he was just 8 weeks old. While his two siblings were adopted out to loving homes, Stone was a star pupil in Circle Tail’s Prison Dog Training Program. Just shy of his 3rd birthday, Stone and I were partnered.
Because of Stone, not only have I left my wheelchair behind, he and I go hiking in the mountains. His assistance with balance and depth perception have empowered me to dramatically increase my physical abilities and endurance, which has, in turn, dramatically increased my cognitive abilities and endurance. Because of Stone, I’ve been able to return to social work, as a volunteer, helping other families whose lives have been altered by brain injury. Because of Stone, I once again lead a rich and fulfilling life. Because of Stone, my world is both bigger and brighter.
A lot of life and love have passed since that first December day Marlys introduced Stone and I. We are such a well tuned team now, it’s hard to even remember that for the first month, figuring out how to put on his harness was so difficult for me it took nearly 10 minutes every time.
Happily, throughout our time as a team, Circle Tail has been there every step of the way.
After we were partnered, Marlys helped us build on the skills Stone learned in Circle Tail’s Inmate/Canine Education Program in order to ensure Stone met my specific needs. Together we taught him to bring my medication to me when the timer went off and then to bring a bottle of water from the refrigerator. Whenever we’ve run into new challenges, Circle Tail has been there with new solutions. When I have questions or concerns or want someone to join our “victory dance” when Stone and I accomplish some new feat, Circle Tail has been there.
Stone and I are now facing an often overwhelming obstacle and true to form, Circle Tail is there. In July, Stone became critically ill with a gastrointestinal illness. While his GI condition has thankfully resolved, it left him with a serious heart problem. In those first few days, when Stone was so acutely ill, Marlys was on the other end of the phone helping me sort through it all and perhaps most importantly, reminding me to breath. Circle Tail’s Advisory Board was there as well. A Vet on the Board sent me information about Stone’s condition, written in a way we “mere mortals” could understand. And now that Stone is rehabbing from his illness and adjusting to his new heart medication and cardiac testing routine, Circle Tail is once again, joining our victory dances.
As time goes by, more and more I will become Stone’s service human. That’s just fine by me as I’m more than happy to return the favor.
As you can see, I owe Circle Tail more than I can ever hope to repay, so when they asked if I would speak at their annual Dinner, Art and Wine for Canines I was thrilled at the opportunity to give something back to this amazing organization that rescued my amazing dog who in turn rescued me. The event is March 3rd and I’ll be speaking about “Building a Life You Like Even When It’s Not the One You Wanted”.
Stone has indeed helped me build a life I like.
You can find out more about the event on the Circle Tail website: http://circletail.net/index.php?page=dinner-art-wine-for-canines-2. The deadline to purchase tickets is Feb 22nd.
Stone and I would love to see you there.
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
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
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.
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
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
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