Taking away some limits and giving back hope …

(Photo: Shinji)

Check out this article: “Changing a Common Belief About Brain Injury” by Sandra Bond Chapman, Huffington Post, 17 June 2015.

This is an important and long-needed change in belief by the medical establishment. Too many times have patients been given limitations of 1 or 2 years for recovering abilities after brain injuries, spinal cord injuries, strokes and other neurological traumas. I was given a prognosis of 2 years but I am still regaining abilities after 20 years. Look at Gabby Giffords, Francesco Clark, Christopher Reeve. They have all written memoirs describing their recoveries and they all regained abilities well past the two-year mark. I am so heartened by this article!

 

WalkingDeb’s Top 9

(Photo: Jurgen Appelo)

The genesis of this blog was a list of things I had learned when I went through my recovery from my car accident. These were things I wish I had known when I got hurt and I sent this list to an extended family member who was having difficulty recovering from a stroke. I was encouraged to share this with a larger audience, and so Deb’s Journey was born.

Today I pulled out this list to send as encouragement to a friend recovering from a fall. Since I am now resuming this blog after an extended break, I thought it would be useful to post it here to revisit where it all began. Below is that original list, with slight modifications for a broader audience. The basic ideas are the same and still hold true for me.

1. Take one minute, hour, day at a time. Set short term goals and tasks – don’t think about what you need to do to get all your abilities back in 6 months. Think about what exercises you need to accomplish in the next hour, the next day, the next week. You can’t do everything at once or immediately. Take things step by step.
2. Trying to do something and failing is one way of learning and building skills. Recovery from neurological injuries shows us this so well: I remember trying to move one of my fingers independently, and not being able to do so. One hour later when I went to show someone what I couldn’t do, I did it!  In that hour, my brain had relearned the path, or learned a new path, to send the signals.
3. If your challenges are physical, take charge of your health and your recovery. Doctors’ prognoses are sometimes at best an educated guess. Accept all the help they offer, but don’t accept the limitations they suggest. I was told that everything that was going to come back would come back by 2 years after my injuries. In fact, things continue to come back 20 years +.
4. Accommodating and adjusting is not a failure or loss, it is just finding another way to do something different from how you did it before. And sometimes you might even end up with a better way than you used to have!
5. It is okay to set goals for yourself, and if you don’t reach them, then reset them. It is okay to be disappointed at not reaching the goal, but then reset the goal and keep going.
6. If your challenge is recovering from something, be prepared for the possibility that this entire experience will change you. Even if you get back to where you were before and wanted to be, you are changed by the journey. Embrace or at least accept  the change as growth and learning.
7. Find the humor whenever possible. Sometimes you have to either laugh or cry, so you might as well laugh and get the good feelings from that.
8. Accept that no matter how much they try, the people who love you can’t totally understand what you are feeling, and that’s okay. They can still travel your journey with you and help you in their own way. In this case, sometimes you just have to accept their  good intentions when their actions aren’t quite enough.
9. Visualize, visualize, visualize. If there is something you are trying to learn to do, visualize yourself doing it over and over, it really does help the brain learn what to do.

The shell game

(Photo: Vanessa Pike-Russell)

I was reminded of a few truths last week by a hermit crab. His name, ironically as it turns out, was Houdini. A friend informed me in an email that Houdini had passed away.

I used to enjoy checking in on Houdini when I visited my friend. Houdini was often active, climbing around the furnishings in his tank, enjoying the occasional corn chip treat.

Houdini outgrew his shell, and needed to move on to a new one. His owners carefully provided several suitable new shells for Houdini to move into, but he refused. He had changed shells before, but this time he did not want to leave his old, and now way too small, shell. At one point he chewed off one of his claws in an effort to fit inside. But even that wasn’t enough, and finally, unable to live in his old shell and refusing to escape to a new one, he died.

As I thought about this sad tale, I recognized how many times I have played this same destructive game. How many times have you stayed in your painful shell instead of leaving it for something that serves you better? Our old shells can take many forms: an unhealthy lifestyle, a broken heart, a long-held anger, the passiveness of victimhood. All of these are too-small containers that don’t let us grow, don’t let us heal, don’t let us move forward and find that better place. But we hold on to them, forcing our selves to stay with the pain, because we are comfortable in this discomfort that we know, scared of facing the world without the pain, the sadness, the anger, the unfairness that has become part of our self-identify.

I know I’ve done it. And more than once. That’s the hard part — you finally pry yourself out of your old shell, go out into world scared and unprotected and find a new, roomy, comfortable, perfect shell. You feel good. Things feel right and safe, and you are moving forward. You are proud of yourself. You have fixed things in your life. And then one day, the shell starts to feel a little tight. Here we go again.

Sometimes its easy to grow and change shells, and sometimes its harder. Sometimes it seems impossible. It depends on how important that pain is to our self-definition. What I try to remember is that the only thing that really keeps us in our shells and causes us pain, is us. We have the power to shed the hurt, sadness, anger and helplessness. We just have to let ourselves do it.

Coping with hope

(photo: gemsling)

“Hope” is the thing with feathers –
That perches in the soul –
And sings the tune without the words –
And never stops – at all –
–Emily Dickenson

I’ve been thinking a lot about hope lately. It is a double-edged sword. It can help you cope with a burden or it can be the burden you have to cope with.

I started thinking about it after reading two Huffington Post articles by Dr. Dan Gottlieb.

In the first, “When Hope Hurts”, Gottlieb talks about how hope can ruin your life when you hope for something to be restored to the way it was before. Gottlieb is a quadriplegic and he said that his doctors gave him a gift when they told him not to hold out hope that he would ever walk again.  For Gottlieb, hope and despair go together. You have to let go of hope to move beyond despair.

I heard Gottlieb speak a year after I “graduated” from the rehab hospital after my accident. The words he spoke that day inspired me and kept me moving forward. He said that disability eventually becomes liberating, because instead of trying to fit in with others and disguise yourself, you have to put all your energy into just living and so you have to be yourself and so you are freer. I learned that he was right and those words have helped me progress over the years.

So, when I read Gottlieb’s first article, I was downhearted. I was so glad that I had not accepted my neurosurgeon’s limited prognosis that all that I would regain would be within two years of my injuries. I still am regaining abilities almost twenty years later. I feared that the difficulties and pain of Gottlieb’s disability had finally worn him down.

To my great relief, that was not the case, as I found when I read his second article. “Hope that Helps”.  Here Gottlieb talks about a different kind of hope, not for something specific to return or to be achieved, but just for your life to get better. If you open yourself up to things be better, in a way that is different from the expectations and standards you held yourself to before, then hope is positive and affirming. And the way to open yourself up to the possibility of a better life is to show yourself compassion and kindness.

I agree with Gottlieb, and I characterize the two hopes in a different way:  The hope that hurts is the hope that looks backward – the hope that things will return to the way they were.This hope does not allow your expectations, needs, desires and goals to change to match your new reality. The hope that helps is the hope that looks forward: the hope that things will get better, that you will travel a new path and find a better place, even if, when you start, you don’t know what or where it is.

A counselor once told me, as I tried to understand and relieve my deep sadness after my accident, that I was moving forward but looking back. She said I need to start looking forward instead. I asked her how to do that, and she had no easy fix and I have struggled with that for many years. Gottlieb has the answer: Be kind to yourself –let your abilities, your desires, your life, and your vision of yourself change. I realize now that I need to turn my hope as well as my head around, and embrace the better that is ahead, whatever it might be.

Stepping it up

(photo: calico_13)

At the office campus where I work, a shuttle takes you to different buildings. I have had difficulty with the shuttle since my accident. The shuttle’s steps are very steep. Combining that physical challenge with the mental one of being outside in relatively unfamiliar territory, surrounded by people who were also waiting to get on the shuttle, I usually ended up stuck on the steps. For a few brief seconds (which felt like a long, humiliating hour), I would freeze, hanging on with both hands to the railing, unable to haul myself up to the next step. Mercifully, my leg muscles would finally kick in and I would shakily board the bus.

I’ve tried visualizing my leg muscles correctly firing as I boarded the bus. I’ve tried taking the steps very slowly, mentally firing each muscle as I go. Both of these approaches have had partial and unpredictable success.

So, I have tried to avoid the shuttle for the past 17 years since I returned to work. Sometimes I drive to the other building, sometimes one of my colleagues generously drives me, sometimes I walk (and sometimes fall), and sometimes I just don’t go. Every meeting or occasion at the other end of campus sends me into several days of fretting about how I will get there.

Earlier this past summer, with my friends’ encouragement and support, I successfully boarded the shuttle several times in a row. That in turn changed my attitude. I now continue to ride the shuttle regularly, and I have gotten to the point that I don’t worry about it any more or consider other options. I just do it.

What changed? I am not sure. I continue to visualize and mentally fire my muscles. I take my time and approach it as one more thing to be done. I accept getting stuck as an unfortunate, but not particularly serious or embarrassing, occurrence. I told my friends about my problem, and let them accompany and encourage me. I am sure all these factors help.

Once again, the two-year limit is has been refuted. Doctors used to give the dreaded two-year limit to spinal cord injury and other neurologically-impaired patients for when their abilities would return. I was told that. Christopher Reeve and others have written that they were told that as well.  Fortunately, like me, they ignored the two-year mark and kept improving. Doctors may be discarding this limit as well. Gabrielle Giffords has noted in interviews that she was not given a limit after her gunshot injury to her head, and she continues to improve.

My last major physical improvement was several years ago. This newly regained ability, simple though it is, has renewed my determination to keep trying to regain more. 18 years later and still getting better – who knows what will come back next? I can’t wait to find out.

Just my world

(photo: Cloganese)

“I don’t think of it as a world of loss … just my world.”
Me, quoted in the Christopher and Dana Reeve Foundation 2012 Annual Report, p. 19

I am honored to have my story and blog profiled in the 2012 Annual Report of the Christopher and Dana Reeve Foundation (see page 19). Christopher’s injury occurred one month after mine, and I felt a connection to him as we both progressed on our journeys.

Her ability to look past her spinal cord injury and into a future of new possibilities is clear in the messages of hope and willpower she offers her readers.

Christopher’s writings and activism were one of the inspirations for me to start this blog and share my experience in the hope of helping others. His foundation champions medical research and its Paralysis Resource Center provides assistance, understanding and encouragement to those of us facing the range of daily challenges that can result from spinal cord injury and paralysis. The foundation also provides an online community where people can connect to help and support each other.

Not an ordinary day . . . or is it?

(photo:maessive)

Last weekend was the 18^th anniversary of my car accident. As I have done in years past, I spent some time thinking about how to react to this milestone.

In the early years after my accident, I mourned what it had taken from me, what I had lost. Back then, my pre-accident life was clear in my memory. I was keenly aware of what was gone, what I could no longer do, and I had not yet begun to rebuild my life and my abilities in a way that worked for me. My mind swirled with loss and sadness. My loss had left me empty and that emptiness in turn had made me lost.

But very slowly things started to change. I started to turn around, and instead of only looking backward, I started to take sneak peeks at the future. Not far ahead at first, because that path seemed too steep and overwhelming for me to travel. But I started to look ahead to those parts I could travel, and as I moved forward step by step, I also began to look further down the path, and saw possibilities as well as obstacles.

Eventually, I stopped mourning the accident. It happened, it was done, I was moving forward. I decided to treat the day as any other. I went to work and went about my daily business.

That approach failed miserably. I might have thought that I was ignoring the anniversary, but it was obviously on my mind and affecting my emotions. I ended up having a very difficult day at work, overreacting to things and becoming upset without even knowing why.

Okay, so I couldn’t ignore the day. I also didn’t want to mourn it. What else could I do? I decided to celebrate it. It was a day that marked a change in my life, a new beginning. It was in essence a birthday. I now treat it as my second birthday. I take the day off from work. I get myself a present. I spend the day doing something fun or different. I take time on the day to stop and think about what I want, where I have been, where I am going. It is a positive day of rebirth and possibility.

But it is also a day to acknowledge what I have lost, and how the accident has impacted my life, both negatively and positively. It is a day to take stock of myself, of what I can do and what I can’t do, and decide how I want to go forward from there and build the life I want.

In this way, the accident anniversary is for me an ordinary day as well. Because every day can be a day of possibility and growth. Growth comes when you stop and acknowledge what you can’t do, figure out what you can do, decide what you want to do and focus on where you want to go. Then use your inner strength to put that all together and get moving. When you do that every morning, you can truly take advantage of all your abilities and strengths, and start moving towards your goals. Every day is both ordinary and a birthday when you start from where you are.

“Paralyzed!” Really?

(Photo: ssri)

I am not getting anything done. I can’t seem to get myself moving. I’m paralyzed.

It’s bad enough that I said this phrase to myself. It is even worse that I said it for several weeks until I realized what I was doing.

“Paralyzed!” Really? Did I really want to use that word, a word that had a stark, visceral, immediate reality for me? I know what it means to actually be paralyzed. I should know better than to throw that word around so easily.

Once I got over my initial disgust at myself for using “paralyzed,” I started thinking about why I used it and what I was, wrongly, communicating to myself.

• I was giving myself an excuse. “Paralyzed” meant I couldn’t move. But I certainly could move. I just wasn’t moving. I had chosen not to move, to not do what I needed to do.
• I made it easy to dismiss the situation and not fix it. By giving myself an label, I didn’t have to explore what the real issue was, and by doing so figure out how to fix it and get myself moving.
• I made it all or nothing. I was “paralyzed” so that I couldn’t get anything done. Everything had equal value. I didn’t have to try to break it down into smaller tasks to then move forward.

Not being aware of the language we use to talk to ourselves can make it difficult to harness our inner strength and achieve what we want to achieve. Next time I am stuck, when I am not doing what I want to do, I will first pay attention to what I am saying to myself.

So, let me rephrase:

• I am not getting done the things I need and want to get done.
  • What is preventing me?
  • Why am I stopping myself?
  • What do I really want?
  • What smaller tasks can I do to keep myself progressing to my larger goal?
  • What conditions or factors that I can control should I change to get myself moving in the right direction again?”

 

Broken at the strong places

(Photo: Images_of_Money)

So, if we don’t grow from becoming strong at the broken places, how do we grow?

Adversity, when it adds value to our lives, does so by turning us upside down and shaking us up.. I think we grow when challenges break our strengths, forcing us to discover new ones inside ourselves.

When I look at myself before and after my accident, my strengths now are not what I had before.  They are strengths that I was forced to discover and develop to cope with my new weaknesses.

Some breaks were immediately obvious.  Even though I can now walk again, my balance is still impaired and I have to struggle at times to maintain it. I can no longer run, nor skip, nor dance to music. I miss folk dancing and aerobic dancing, which I used to greatly enjoy. However, the loss of balance has forced me to be more aware of what is around me and to slow down. I am now more observant and patient, because I have to be.

Other breaks revealed themselves later, I used to be able to rely on my long-term memory of small details. I remembered what I did and why. (This was not always a good thing – I used to dwell and relive my mistakes and bad judgment over and over, but that is the topic for another post.) After the accident, I discovered that my long-term memory was much weaker than what it was before.

I learned this when I sat down to review my budget and couldn’t remember how I had figured out a certain amount. So, I had to calculate it all over again. This time, having learned my lesson, I documented all my steps so that later on I would know how I got to that figure. Thus was born a new skill for making sure I keep good records of what I do and why. This has served me well ever since, both personally and professionally. Documenting my thoughts and processes helps me to think things out and verify my assumptions and decisions. It also helps me to make the correct decisions going forward. And it helps me communicate with others in a clear and organized way. So the weakening of my memory helped me to become more organized, rational and credible.

Sometimes adversity reveals to us an existing strength that masqueraded as a weakness. In previous blog posts, I have described my “pig-headed stubbornness.” This trait has often gotten me into trouble in my life, when I would be reluctant to change direction or consider other options. But when I was hurt, and my prognosis was poor and my future looked limited, my pig-headed stubbornness served me well. Because deep down I believed that only I knew what I could or could not do, and what was right for me, I persevered in my recovery, and fought my way out of the wheelchair and back to independent living.

I don’t want to paint an overly rosy picture here. Being broken hurts and loss of skills and abilities can be devastating. I mourn the loss of skills I relied on and activities I enjoyed. It has taken a long time to build new strengths and regain my balance, both literally and figuratively.

I am still trying to get some abilities back. I play games and do exercises to try to improve my long-term memory. I miss the security of knowing that I can rely on my memory, but I compensate by writing things down.

And I strive to keep my newly discovered strengths in balance. I am stubborn when it truly adds value to my attaining my goals, and I try to be flexible and open the rest of the time.. In this way, adversity has added new tools for me to use and reminded me to value, hone and use the ones that I already have.

Next:  “Paralyzed!”  Really?

Strong at the broken places?

(Photo: cbeana)

The world breaks everyone and afterward many are strong at the broken places. – Ernest Hemingway

I dislike this quotation. I think it presents a simplistic view of growth and change. The comfort it offers can be ultimately defeating.

Hemingway is suggesting that change and growth come from our experiencing trauma or difficulty. A similar perspective underlies “what doesn’t kill you makes you stronger”.

The idea here is that when we break and heal, the healing process itself makes us stronger. Sometimes, that can be true, especially with medical intervention. When I had a spinal cord injury, my vertebrae were fused with bone from my hip and stabilized with a metal rod. As a physical therapist told me later, from then on “those vertebrae are not going anywhere.”  Similarly, in intellectual and emotional ways, Hemingway suggests we are stronger where we have suffered the most. While this idea is very reassuring and inspiring for those of us who have undergone, or are undergoing, a trauma, I think it may actually limit our ability to move on and progress.

Yes, we can learn and grow from a failure. Yes, recovering from a trauma or a difficult experience can add to our lives by teaching us new skills. But to say that the world breaks everyone and leaves you stronger at the breaks may cause people to feel guilty or downhearted if they aren’t stronger in that way. For example, people who suffer and cope with post-traumatic stress disorder may still be growing and moving on. They should not discount or devalue their own growth because they still hurt at their deepest wounds.

Expecting ourselves to be strong at the broken places sets an unreasonable and at times unreachable standard. Sometimes we stay broken in those places. My current strengths are not in my injured areas. I don’t walk better, see better, or talk better than I did before my car accident. I don’t have better control over my emotions than I did before the head injury. Does this mean I am weak, that I am not moving forward? No, to me it means that I had to find inner strength in other places within me. And that is what enables me to truly heal and grow.

So, instead of strong at the broken places, I prefer an alternative view of change and growth: broken at the strong places.

Next: Broken at the strong places