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.


To find a brain injury support group in Ohio:
Brain injury Association of Ohio - or by phone 866-644-6242

To find a support group in other states:
Brain Injury Association of America – 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 – or 513-821-6111

Dr Maureen Boylan, Hands of Light Chiropractic - 513-231-2892