Showing posts with label Grief. Show all posts
Showing posts with label Grief. Show all posts
Wednesday, May 16, 2012
The Terminal Optimist Meets Her Match
This weekend I was reminded of the importance of grief, not just at home but at work as well. We all recognize the necessity of grief when someone we love dies, but the truth is in order to have an authentic sense of peace after any loss, you have to acknowledge it and the feelings it brings.
I used to be one of those always positive all the time people. I had a friend who half jokingly said I wasn’t Eternally Optimistic; I was Terminally Optimistic.
She’s right I was. Today, after nearly 16 years of living with the daily challenges of life with a brain injury and with the help of a Rehabilitation Psychologist who, in spite of my very best efforts, refuses to allow me to B.S. myself, while I am still a glass half full gal, I understand what my friend was trying to tell me when she dubbed me Terminally Optimistic.
I now understand that when one door closes and another opens, while it is wonderful to be excited and hopeful about the opportunities and possibilities that await, it is equally important to acknowledge the loss of what lies behind the closed door and to deal with the stress that accompanies the transition.
This weekend I was reminded of what can happen to a work place when there is too much change with too little support and no recognition of the losses the staff has endured. I was talking with a friend about a job I had, geez what feels like a million year ago. I was the Director of Mental Health Case Management at a large Community Mental Health Center.
On my first day I went off to work eager and excited. I loved new challenges. I came home at the end of the first day shell shocked and told my husband, and remember this was during the Terminally Optimistic phase of my life, “My staff are HORRIBLE human beings. They hate their clients. They’re horrendous.”
At the end of the first week I came home and said “My staff are all burned out. Understandably so.”
In the previous 2 – 3 years, they had endured organizational restructuring, changes in management and management style, ongoing rumors of financial instability and potential layoffs and a series of changes in funding regulations each of which mandated changes in documentation, Continuing Education and most devastatingly, changes in how they were and were not able to help their clients. No one gave them support for the anxiety and stress this cascade of changes created. No one even acknowledged how hard it might be.
As a result, the staff got bitchy, bitter and burned out.
I had my work cut out for me. My vision – I wanted us to provide great services AND for this to be a great place to work. I knew it would be a long road ahead AND I absolutely believed we could get there.
I began by acknowledging the turmoil they’d been through and by giving them permission to grieve all they had lost, when work felt simpler, less stressful and more stable. We talked about how it used to be and what they missed about it. THEN we talked about the new reality and, together, we figured out the ways we were going to adapt and adjust to live within it.
I created an atmosphere in which it became more socially rewarding to be positive than be the constant critic or the perpetual Yes-But’er. (Yeah but that won’t work because…) When a staff member said something positive s/he got positive feedback from me. (I remember joking with a colleague that in my Department if you said something positive about a client, balloons and streamers fell from the ceiling.) On the wall in the staff meeting room was a sign with a big red circle with a slash through it. In the middle of the circle were the words “But that’s the way we’ve always done it.”
Slowly, steadily and surely our services improved as did staff morale.
It all started, it all needed to start, with allowing them to openly grieve the long list of losses they’d endured.
What was true for this group of human service professionals is equally true for each of us as individuals. When we sweep under the rug, life’s little losses, they each take a toll. When all we allow ourselves to feel is the excitement about what lies on the other side of the open door and deny the sense of loss that comes from the door that’s closing, we pay a price.
Denial is hard and exhausting work. It’s the emotions we deny that control us. Unless and until we admit we have them, they will affect us. They will affect our relationships, our happiness, our health and yes, our work.
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.
Saturday, March 12, 2011
3 Steps Forward 2 2/3 Steps Back
Recoveries, life in general I suppose, are fraught with setbacks. Whether you’re recovering from an emotional trauma inflicted during childhood or from a case of tendinitis sustained while perfecting Deep Purples’ “Smoke on the Water” on Guitar Hero, the path to good health is seldom, if ever, a straight trajectory.
This particular inconvenient truth, rings especially loud when you are recovering from a brain injury, a recovery process that all too frequently feels like 3 steps forward then 2 and 2/3 steps back.
The Brain Injury Association of Ohio provides me the great privilege of facilitating a support group for brain injury survivors. At our most recent meeting, I was reminded that I am not alone in living with the reality that the lifelong recovery from a brain injury can be filled to the brim with setback after setback. I met a woman at the group, who, like me, has sustained multiple brain injuries. (Once you’ve had a brain injury, you are at a significantly increased risk for additional brain injuries.) In addition, like me, she’s had other medical problems, (in my case surgeries), that have resulted in setbacks in her brain injury recovery. Like me, she too has days when she feels like her recovery process has been 3 steps forward and 2.99999 steps back. Each time a setback occurs, we have to work hard, and I do mean hard, at rehabilitation just to return to our “baseline”.
As is so often the case in our support group, on the one hand, I felt comforted by the vivid reminder that I am not alone in my experience, that there are other people who have a visceral understanding of what I’m going through. On the other hand, I wouldn’t wish membership in this particular club on anyone. But, if you have had the misfortune of “learning our secret handshake”, I hope that you too are able to find a support group of brain injury survivors who can help you feel understood, which in my mind is a key component of healthy recovery.
My most recent setback began with back surgery last March. I had injured my back in the car accident in which I sustained my original brain injury, nearly 16 years ago. Over the years, it had gotten worse through wear and tear and as my Rehab Doctor put it “gravity”, which I’m pretty sure is his polite way of saying I’m getting old. The surgery went swimmingly well; the recovery, not so much.
A week after surgery, I fell during Physical Therapy and tore my scar tissue. When it re-formed, it trapped the nerve causing significant nerve pain in my foot and leg, but this time there was no surgical remedy available.
The first several months were a whole lot of wait and see followed by adding medication at increasing doses for the nerve pain in addition to the waiting and the seeing.
I am not gifted at wait and see. It doesn’t come naturally to me. ( I imagine those of you who know me well will be somewhat less than startled by that revelation.)
Thankfully, I’ve now moved beyond the waiting and the seeing. With the help of some amazing professionals, I’m working on both loosening the grip the scar has on the nerve and working to return to my pre-surgery cognitive baseline. The constant pain, the significant decrease in the amount of exercise I can do, the challenge of trying to manage my life while spending much of the day laying down, the physical and emotional stress, the new medication and the worsening of migraines from epidurals have all resulted in a decline of my cognitive abilities, including my cognitive endurance, my memory and my ability to create and carry out daily plans or, for those of you who like that fancy Doctor-speak, my Executive Functioning skills.
Happily, I am improving. Because of the hands on help from my case manager from Plan of Southwest Ohio, my organizational skills are improving. While I still have reminder notes at various strategic places around the house reminding me to shower or make dinner, now, more often than not, I actually remember to follow the instructions on the note. Although I’m making progress in my ability to follow a daily plan, I do appreciate the info. my niece Leilah and friend Dianne sent me about how not showering every day is both hip and healthy. I forwarded it on to my case manager as part of my ongoing campaign to convince her that returning to Facebook should be a higher priority than hygiene.
Thus far, I’ve completed only the first half of my cognitive evaluation. Going into the eval, I was comforted by the realization that now that I’m just a few months shy of 50, my scores will be compared to the scores of older adults to see how I stack up against the norm. I’m hoping that means the bar for “average” will be at least a little lower than the last time I was tested. Finally, an advantage to aging, well, that and as Wood recently pointed out, now that we’re older, we don’t have to worry quite so much about people killing us to steal our organs to sell on the black market. :)
During the evaluation, I completely bombed on one particular task involving a map of a zoo. About 10 minutes in, when I realized I had absolutely no hope of succeeding, I announced “I’ve just decided to join PETA and we denounce zoos.” I ‘m hoping she gives extra credit points for being funny. ( I’m pretty sure that’s how I passed High School Physics.)
I failed on the zoo task because I wasn’t able to follow the instructions she’d given me. The evaluator, no doubt, concluded I was unable to hold the instructions in my memory and then apply them to the task at hand. However, those of us who are familiar with my family have to wonder what role our apparent genetic propensity to ignore instructions and re-write the rule book may have played in my failure.
As I reflect on the paragraphs I’ve just written, I’m struck, yet again, by the complexity of the human brain and the curious nature of brain injuries. On the one hand, I am quite capable of writing this blog entry and, on the other hand, I’m having so much trouble planning my day, remembering to shower is a victory.
Physically, Stone and I are both continuing our mutual rehab via walking , slowly increasing our speed and distance. For both of us, our physical endurance varies somewhat from day to day, but we are both improving.
The world’s greatest chiropractor, Dr Maureen Boylan, (and yes I would say that even if she didn’t read my blog and even if her sister didn’t date my brother Tom when they were in college and I was 11 or 12), has begun working on loosening the scar tissue by stretching my lower back and on breaking up the scar tissue using the Graston Technique, in which she’s certified, and which, to be honest, is more than a little uncomfortable.
Pain for a purpose is just fine with me.
In addition, later this month, I’ll have the 3rd in a series of 3 epidurals that help not only decrease the pain but hopefully will also help break up the scar tissue. The epidurals will be followed by a week of IV therapy via home care to reduce the migraine pain aggravated by the steroids in the epidurals. I call it the IV Migraine-Be-Gone cocktail. I did this sequence last Fall and I’ll likely repeat it again sometime later this year.
Pain for a purpose.
I’m also doing a series of stretches multiple times a day as this too should help loosen the scar’s hold on the nerve. The stretching is really a two-for exercise in that it serves as rehab for the part of my brain that processes motion, which, over the past year, has again become significantly impaired. The stretches leave me dizzy and nauseous but also leave me knowing I’m doing what I need to do to get better.
Pain for a purpose.
As I read back over the last few paragraphs, I realize it may sound horrible.
It’s not. It’s hopeful.
Okay, on some days it feels a little horrible.
Getting back to our most recent brain injury support group meeting, I was sitting at a table with a group of incredibly strong men and women, all of whom have coped with the reality of living with a brain injury partly by becoming their own best advocate, by becoming active participants in their own recoveries, by becoming active participants in their own lives. (I told you it was a privilege to facilitate this group.)
As I was sitting listening to brain injury survivors talk about all they had learned about brain anatomy and brain injuries, about complex brain imaging procedures, and about rehabilitation and recovery, I suddenly realized why I’ve been feeling so much better in the last month. It’s not just that the nerve pain has decreased to some degree allowing me to do more physical rehab and it’s not just that my cognitive skills have improved enough so that I no longer feel quite so overwhelmed by life so much of the time and that I now remember to shower before I start offending even the dog (well usually anyway). I’m feeling better because I’ve made a conscious effort to talk about the feelings – the fear and frustration, the sadness and grief – that have accompanied this setback and because, as I’ve announced to nearly everyone who will listen, I’ve got a plan.
Together, my rehab team and I have created a plan for how to move forward. I feel in charge of my own life again. I’m doing everything I can to maximize the likelihood I’ll get the outcome I’m hoping for – a return to my pre-surgery cognitive baseline and complete relief from nerve pain or, more realistically, a dramatic decrease in pain.
According to my rehab doc, the odds are in my favor, although it may take another couple of years to get there. Most days I’m okay with that. I’m not thrilled about it, but I’m okay with it, because I have a plan. I helped create the plan. I play a central role in implementing the plan. I’ve got a plan and with the plan comes at least an illusion of control over what’s happening to me. I’m making choices, healthy choices, to maximize the likelihood I’ll have the best of all possible lives, now and in the future.
Looking back on all the time last year I spent waiting and seeing, suddenly I realize that I had a plan then too. The plan was to follow the advice of my very skilled, very experienced rehab doc, who, in the 15+ years I’ve known him, has never given me bad advice, who has been the choreographer of my truly remarkable recovery from brain injury these last nearly 16 years.
The waiting and seeing and being fairly inactive, wasn’t something that was being done to me; it was something I was choosing to do because, according to the advice of a trusted medical professional, it was in my long term best interest. It was pain for a purpose.
I wonder how less frustrating the waiting and seeing would have seemed if I had re-framed it in that way while I was going through it. I wonder how less frustrating it would have seemed if I had remembered that while we can’t control everything that happens to us, whether we realize it or not, we are always making choices about how we deal with the painful realities that life presents.
As for me, I will be eternally grateful that my family, friends and rehab. professionals continue to empower me to make healthy choices even in the face of life's difficult challenges.
And now for the part of this blog entry I know most of you have been waiting for, the part that kept you reading, hoping the next paragraph might include what you’ve been wanting to know – How’s Stone?
He is, of course, still completely adorable and still significantly smarter than I am.
Heart health wise, he seems to be holding his own. The medication and special prescription cardiac formula food definitely seem to be working. His last ECHO cardiogram was in November at Ohio State and we did the dance of joy when the cardiologist, a.k.a. Dr Grand-Pooh-Bah, told us Stone’s dilated cardiomyopathy had not progressed and that his heart may even be contracting a little bit better. His next ECHO cardiogram at OSU is in April and we’re hoping for more good news.
Last week an internist diagnosed him as having hypothyroidism, but his cardiologist looked at the same lab work and disagreed. Stone’s amazingly wonderful if-I-were-a -dog -I’d-for -sure-sniff-her-butt primary care Vet, Dr Kohls, at Beechmont Pet Hospital, is helping us sort it out and decide how to proceed.
Resources:
To find a brain injury support group in Ohio:
Brain injury Association of Ohio - www.biaoh.org or by phone 866-644-6242
To find a support group in other states:
Brain Injury Association of America – www.biausa.org or by phone 800-444-6443
Plan of Southwest Ohio is a private, non-profit organization that provides case management and support services to persons with disabilities.
For information – www.planswohio.org or 513-821-6111
Dr Maureen Boylan, Hands of Light Chiropractic - 513-231-2892
This particular inconvenient truth, rings especially loud when you are recovering from a brain injury, a recovery process that all too frequently feels like 3 steps forward then 2 and 2/3 steps back.
The Brain Injury Association of Ohio provides me the great privilege of facilitating a support group for brain injury survivors. At our most recent meeting, I was reminded that I am not alone in living with the reality that the lifelong recovery from a brain injury can be filled to the brim with setback after setback. I met a woman at the group, who, like me, has sustained multiple brain injuries. (Once you’ve had a brain injury, you are at a significantly increased risk for additional brain injuries.) In addition, like me, she’s had other medical problems, (in my case surgeries), that have resulted in setbacks in her brain injury recovery. Like me, she too has days when she feels like her recovery process has been 3 steps forward and 2.99999 steps back. Each time a setback occurs, we have to work hard, and I do mean hard, at rehabilitation just to return to our “baseline”.
As is so often the case in our support group, on the one hand, I felt comforted by the vivid reminder that I am not alone in my experience, that there are other people who have a visceral understanding of what I’m going through. On the other hand, I wouldn’t wish membership in this particular club on anyone. But, if you have had the misfortune of “learning our secret handshake”, I hope that you too are able to find a support group of brain injury survivors who can help you feel understood, which in my mind is a key component of healthy recovery.
My most recent setback began with back surgery last March. I had injured my back in the car accident in which I sustained my original brain injury, nearly 16 years ago. Over the years, it had gotten worse through wear and tear and as my Rehab Doctor put it “gravity”, which I’m pretty sure is his polite way of saying I’m getting old. The surgery went swimmingly well; the recovery, not so much.
A week after surgery, I fell during Physical Therapy and tore my scar tissue. When it re-formed, it trapped the nerve causing significant nerve pain in my foot and leg, but this time there was no surgical remedy available.
The first several months were a whole lot of wait and see followed by adding medication at increasing doses for the nerve pain in addition to the waiting and the seeing.
I am not gifted at wait and see. It doesn’t come naturally to me. ( I imagine those of you who know me well will be somewhat less than startled by that revelation.)
Thankfully, I’ve now moved beyond the waiting and the seeing. With the help of some amazing professionals, I’m working on both loosening the grip the scar has on the nerve and working to return to my pre-surgery cognitive baseline. The constant pain, the significant decrease in the amount of exercise I can do, the challenge of trying to manage my life while spending much of the day laying down, the physical and emotional stress, the new medication and the worsening of migraines from epidurals have all resulted in a decline of my cognitive abilities, including my cognitive endurance, my memory and my ability to create and carry out daily plans or, for those of you who like that fancy Doctor-speak, my Executive Functioning skills.
Happily, I am improving. Because of the hands on help from my case manager from Plan of Southwest Ohio, my organizational skills are improving. While I still have reminder notes at various strategic places around the house reminding me to shower or make dinner, now, more often than not, I actually remember to follow the instructions on the note. Although I’m making progress in my ability to follow a daily plan, I do appreciate the info. my niece Leilah and friend Dianne sent me about how not showering every day is both hip and healthy. I forwarded it on to my case manager as part of my ongoing campaign to convince her that returning to Facebook should be a higher priority than hygiene.
Thus far, I’ve completed only the first half of my cognitive evaluation. Going into the eval, I was comforted by the realization that now that I’m just a few months shy of 50, my scores will be compared to the scores of older adults to see how I stack up against the norm. I’m hoping that means the bar for “average” will be at least a little lower than the last time I was tested. Finally, an advantage to aging, well, that and as Wood recently pointed out, now that we’re older, we don’t have to worry quite so much about people killing us to steal our organs to sell on the black market. :)
During the evaluation, I completely bombed on one particular task involving a map of a zoo. About 10 minutes in, when I realized I had absolutely no hope of succeeding, I announced “I’ve just decided to join PETA and we denounce zoos.” I ‘m hoping she gives extra credit points for being funny. ( I’m pretty sure that’s how I passed High School Physics.)
I failed on the zoo task because I wasn’t able to follow the instructions she’d given me. The evaluator, no doubt, concluded I was unable to hold the instructions in my memory and then apply them to the task at hand. However, those of us who are familiar with my family have to wonder what role our apparent genetic propensity to ignore instructions and re-write the rule book may have played in my failure.
As I reflect on the paragraphs I’ve just written, I’m struck, yet again, by the complexity of the human brain and the curious nature of brain injuries. On the one hand, I am quite capable of writing this blog entry and, on the other hand, I’m having so much trouble planning my day, remembering to shower is a victory.
Physically, Stone and I are both continuing our mutual rehab via walking , slowly increasing our speed and distance. For both of us, our physical endurance varies somewhat from day to day, but we are both improving.
The world’s greatest chiropractor, Dr Maureen Boylan, (and yes I would say that even if she didn’t read my blog and even if her sister didn’t date my brother Tom when they were in college and I was 11 or 12), has begun working on loosening the scar tissue by stretching my lower back and on breaking up the scar tissue using the Graston Technique, in which she’s certified, and which, to be honest, is more than a little uncomfortable.
Pain for a purpose is just fine with me.
In addition, later this month, I’ll have the 3rd in a series of 3 epidurals that help not only decrease the pain but hopefully will also help break up the scar tissue. The epidurals will be followed by a week of IV therapy via home care to reduce the migraine pain aggravated by the steroids in the epidurals. I call it the IV Migraine-Be-Gone cocktail. I did this sequence last Fall and I’ll likely repeat it again sometime later this year.
Pain for a purpose.
I’m also doing a series of stretches multiple times a day as this too should help loosen the scar’s hold on the nerve. The stretching is really a two-for exercise in that it serves as rehab for the part of my brain that processes motion, which, over the past year, has again become significantly impaired. The stretches leave me dizzy and nauseous but also leave me knowing I’m doing what I need to do to get better.
Pain for a purpose.
As I read back over the last few paragraphs, I realize it may sound horrible.
It’s not. It’s hopeful.
Okay, on some days it feels a little horrible.
Getting back to our most recent brain injury support group meeting, I was sitting at a table with a group of incredibly strong men and women, all of whom have coped with the reality of living with a brain injury partly by becoming their own best advocate, by becoming active participants in their own recoveries, by becoming active participants in their own lives. (I told you it was a privilege to facilitate this group.)
As I was sitting listening to brain injury survivors talk about all they had learned about brain anatomy and brain injuries, about complex brain imaging procedures, and about rehabilitation and recovery, I suddenly realized why I’ve been feeling so much better in the last month. It’s not just that the nerve pain has decreased to some degree allowing me to do more physical rehab and it’s not just that my cognitive skills have improved enough so that I no longer feel quite so overwhelmed by life so much of the time and that I now remember to shower before I start offending even the dog (well usually anyway). I’m feeling better because I’ve made a conscious effort to talk about the feelings – the fear and frustration, the sadness and grief – that have accompanied this setback and because, as I’ve announced to nearly everyone who will listen, I’ve got a plan.
Together, my rehab team and I have created a plan for how to move forward. I feel in charge of my own life again. I’m doing everything I can to maximize the likelihood I’ll get the outcome I’m hoping for – a return to my pre-surgery cognitive baseline and complete relief from nerve pain or, more realistically, a dramatic decrease in pain.
According to my rehab doc, the odds are in my favor, although it may take another couple of years to get there. Most days I’m okay with that. I’m not thrilled about it, but I’m okay with it, because I have a plan. I helped create the plan. I play a central role in implementing the plan. I’ve got a plan and with the plan comes at least an illusion of control over what’s happening to me. I’m making choices, healthy choices, to maximize the likelihood I’ll have the best of all possible lives, now and in the future.
Looking back on all the time last year I spent waiting and seeing, suddenly I realize that I had a plan then too. The plan was to follow the advice of my very skilled, very experienced rehab doc, who, in the 15+ years I’ve known him, has never given me bad advice, who has been the choreographer of my truly remarkable recovery from brain injury these last nearly 16 years.
The waiting and seeing and being fairly inactive, wasn’t something that was being done to me; it was something I was choosing to do because, according to the advice of a trusted medical professional, it was in my long term best interest. It was pain for a purpose.
I wonder how less frustrating the waiting and seeing would have seemed if I had re-framed it in that way while I was going through it. I wonder how less frustrating it would have seemed if I had remembered that while we can’t control everything that happens to us, whether we realize it or not, we are always making choices about how we deal with the painful realities that life presents.
As for me, I will be eternally grateful that my family, friends and rehab. professionals continue to empower me to make healthy choices even in the face of life's difficult challenges.
And now for the part of this blog entry I know most of you have been waiting for, the part that kept you reading, hoping the next paragraph might include what you’ve been wanting to know – How’s Stone?
He is, of course, still completely adorable and still significantly smarter than I am.
Heart health wise, he seems to be holding his own. The medication and special prescription cardiac formula food definitely seem to be working. His last ECHO cardiogram was in November at Ohio State and we did the dance of joy when the cardiologist, a.k.a. Dr Grand-Pooh-Bah, told us Stone’s dilated cardiomyopathy had not progressed and that his heart may even be contracting a little bit better. His next ECHO cardiogram at OSU is in April and we’re hoping for more good news.
Last week an internist diagnosed him as having hypothyroidism, but his cardiologist looked at the same lab work and disagreed. Stone’s amazingly wonderful if-I-were-a -dog -I’d-for -sure-sniff-her-butt primary care Vet, Dr Kohls, at Beechmont Pet Hospital, is helping us sort it out and decide how to proceed.
Resources:
To find a brain injury support group in Ohio:
Brain injury Association of Ohio - www.biaoh.org or by phone 866-644-6242
To find a support group in other states:
Brain Injury Association of America – www.biausa.org or by phone 800-444-6443
Plan of Southwest Ohio is a private, non-profit organization that provides case management and support services to persons with disabilities.
For information – www.planswohio.org or 513-821-6111
Dr Maureen Boylan, Hands of Light Chiropractic - 513-231-2892
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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