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 resilience. Show all posts
Showing posts with label resilience. Show all posts
Friday, June 26, 2015
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
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