Uncategorized

I know two things about ALS, also known as Lou Gehrig’s disease: 1. It’s awful, and 2. It’s awful.

I have only had a couple of experiences with ALS and those were just knowing people who had a loved one with the disease. A friend of ours lost her partner of thirty years to ALS in 2007. I never knew Jane, but Andrea said she was witty, vivacious, and fun. Andrea also said it was excruciating to watch Jane lose her speech first, followed by declines in motor functioning that eventually led to no mobility at all.

Andrea and I sometimes talk about what it would be like to have a disease like ALS, to watch helplessly as your body deteriorates until you can no longer move. What kind of life is that? How can one be resilient in this worst of scenarios?

It never fails that when I ask these kinds of questions the universe slides an answer right under my nose. Literally, this time, as I sat at our kitchen table bent over our weekly paper, The Almanac. A headline caught my eye: “Teacher dies after battle with ALS”.

Hmmm. There must be more to this story as this was no usual obituary but an actual article written about this man. I picked up the paper and began to read.

Jason Picetti, age 42, former middle school math teacher, diagnosed with ALS in 2008. Married and the father of a three-year-old daughter. “Aww, poor guy,” I think to myself.

As I have observed previously on this blog: O, me of little faith.

Reading further into the article, I see that Jason wrote a blog. “Yes, good resiliency skill,” I note, “Probably a great way for him to vent.”

Then I read the title of his blog: The Adventures of ALS Boy. I grin. Wait a minute. This is no mere venting blog, I can tell that by the title. This guy has chutzpah. I go to my computer and punch in www.alsboy.com.

After reading three posts, I came to the conclusion that my “Aww, poor guy,” response wasn’t even close to an accurate thought about Jason Picetti. “Wow, what a guy!” was much closer.

Here are just a few of the aspects of resiliency to be found in Jason’s writing:

1. Humor

Jason has listed a quarter of his posts over the last three years under the category of “Allegedly Funny.” I think he is the only writer who has made me laugh over stories of haphazard drooling and the “unearthly howls” of spontaneous yawns.

2. Radical acceptance

I would have just called this regular ol’ acceptance until my friend Susan pointed out that it is really radical acceptance. Jason had been diagnosed with ALS – a fatal and “awful” disease – only seven months earlier, and here is how he introduces himself in his blog:

In his days prior to wearing the cape and cowl of the Amazing, Inspiring and Adventurous ALS Boy, Jason Picetti’s not-so-secret identities included weekend warrior rock star, enthusiastic and motivating middle school math teacher, and all-around decent guy. While still a decent guy, he has been battling the evil forces of ALS since being diagnosed in February of 2008. Never one to shy away from a good fight, Jason has been combining the healing forces of western medicine, alternative medicine, a positive and never-give-up attitude and mindset, and the love and prayers and support of his incredible family and friends to win the toughest battle of his life.

Here is a man who knows what he is up against and accepts it fully so he can utilize his arsenal of “healing forces.”

3. Using an arsenal of healing forces

Not to be redundant, but Jason’s use of his medical team, family, friends, and anything he can think of to live well with this disease is a great example for us to tackle even our “ordinary” problems with an eclectic arsenal of support.

4. The art of active non-resistance

Although Jason uses language like “battling the evil forces of ALS”, he also practices non-resistance by being able to hold two fairly opposite thoughts/feelings at the same time using the magic word and: I don’t like ALS and I’m going to live my best life with it.

At one point, Jason tells a story about how he figured out on his own how to get his thumb unstuck from his involuntarily clenched fist in the middle of the night. He ends with:

I grinned like a cat who had just made short work of the family’s fine feathered friend as I drifted off to sleep dreaming the dreams of the victorious champion.

Jason, you will always be a champion to me. Thanks for showing me that just because a disease is “awful” doesn’t mean your life has to be the same. Rest in peace and joy.

Takeaway points: Want to be inspired? Awed? Laugh out loud? Read The Adventures of ALS Boy. Start with the first post and read all the way through. You’ll laugh, cry, and you’ll never be the same.

What do you learn from ALS Boy?

1. Will Rogers

Live in such a way that you would not be ashamed to sell your parrot to the town gossip.

2. Robert Louis Stevenson

Life is not a matter of holding good cards, but of playing a poor hand well.

3. Viktor Frankl

He who has a why to live for can endure almost any how.

4. Charles Darwin

It is not the strongest of the species that survive, nor the most intelligent, but the one most responsive to change.

5. Japanese proverb

The bamboo that bends is stronger than the oak that resists.

What’s your favorite quote?

I’m available for individual therapy sessions to help you get your bounce back. Call me at 650-529-9059 or email me for a free 30-minute consultation.

Several years ago, I sat with my partner, Ruth, as she recovered from her second round of aggressive chemo treatment. She had metastatic breast cancer and this was the last of several different kinds of treatment she had received over her four-year journey with the disease. This particular concoction made her very weak and ill.

I was reading Science of Mind Magazine and a passage jumped out at me. “Listen to this,” I said to Ruth as she lay in bed:

When we are ill, we may feel lost as to what to do or where to go. Waiting may have the feel of being passive, but think of the caterpillar in the cocoon, the seed in the ground, or a mother bird sitting on her egg. Waiting in our lostness is sometimes vital for the journey into wholeness.

“Does that mean I’m going to become a butterfly?” Ruth asked excitedly.

“I think it does,” I replied, squeezing her hand.

I knew what she meant. We had often talked about the reality that this cancer would eventually kill her. She was talking about being set as free as a butterfly when she died.

Which she did, two months later.

Suddenly, I was the one in the cocoon. I wasn’t prepared for the intensity of my grief and I felt utterly lost and unsure of everything, including life itself. It took almost three years before I crawled out of the cocoon, my fragile, weak wings dewy with both tears and anticipation. And, finally, I started to fly.

I wasn’t the same as I was before; I was very different and there were times I longed to crawl back into the cocoon. But my new life was beautiful in a way that would not have occurred had I not allowed myself to cocoon and “wait in lostness”. The experience of grief filled me out and made me more of a whole person, able now to be with others in a healing way on their paths of grief.

Sometimes it’s easy to misinterpret your need for cocooning as being passive, the feeling of lostness as being undesirable. And yet, maybe those times are the very thing you need to be whole.

Be gentle with yourself when you find yourself lost and waiting. Perhaps you need that time to become the beautiful butterfly you were always meant to be.

Takeaway points: Although our culture promotes being action- and goal-oriented, there are times when lostness and cocooning are necessary for much-needed but unexpected growth.

Have you had times of cocooning in your life?

If you are feeling lost and unsure, I am happy to walk that path with you or have gentle, healing conversations within your cocoon. Call me at 650-529-9059 or email me for a counseling appointment.

Part of being resilient in the outer world is learning to be resilient in our inner worlds. If we
 don’t have a solid concept of who we really are inside, then it is much more likely that events happening outside are going to rock both our inner and outer worlds, and not in a good way.

With that in mind, I want to present some thoughts from two women I admire greatly: writer Anne Lamott and shame researcher Brene Brown.

I first shared these words from Anne Lamott in a previous post called Becoming the person you were meant to be:

We begin to find and become ourselves when we notice how we are already found, already truly, entirely, wildly, messily, marvelously who we were born to be. The only problem is that there is also so much other stuff, typically fixations with how people perceive us, how to get more of the things that we think will make us happy, and with keeping our weight down. So the real issue is how do we gently stop being who we aren’t? (My emphases.)

 

And here are some thoughts from Brene Brown’s book The Gifts of Imperfection: Let Go of Who You Think You’re Supposed to Be and Embrace Who You Are.

When we spend a lifetime trying to distance ourselves from the parts of our lives that don’t fit with who we think we’re supposed to be, we stand outside of our story and hustle for our worthiness by constantly performing, perfecting, pleasing, and proving. (p.23)

Authenticity is the daily practice of letting go of who we think we’re supposed to be and embracing who we are.

Choosing authenticity means

• cultivating the courage to be imperfect, to set boundaries, and to allow ourselves to be vulnerable;
• exercising the compassion that comes from knowing that we are all made of strength and struggle; and
• nurturing the connection and sense of belonging that can only happen when we believe that we are enough.

Authenticity demands Wholehearted living and loving – even when it’s hard, even when we’re wrestling with the shame and fear of not being good enough, and especially when the joy is so intense that we’re afraid to let ourselves feel it.

Mindfully practicing authenticity during our most soul-searching struggles is how we invite grace, joy, and gratitude into our lives. (p.50)

 

Takeaway points: Even though we are so often encouraged to be someone we aren’t, only cultivating the courage to be our true selves allows us to live freely and authentically – a good recipe for resilience.

 

I know I sometimes struggle with authenticity and feel the pressure to be someone other than my true self. How about you?

Brown, Brene. The Gifts of Imperfection: Let Go of Who You Think You’re Supposed to Be and Embrace Who You Are. 2010. Hazelden; Minnesota.

I often write about your “resiliency toolkit” so I want to give you a handy summary of the tools that have been mentioned here on the Bounce blog. The links on each tool will lead you to the past blogs that highlight that tool.

• Acceptance – the art of being realistic about your world and what is happening in it – good or bad.

There are many subsets to this tool such as acknowledging your emotions, even when they are “bad“, learning non-resistance, and accepting life as it is not as it should be.There are also more thoughts about acceptance here, here, and in this post about bouncing back after financial loss.

• Social support – generating and accepting help and emotional support from others.

This tool is also discussed here, here, and this recent post about how to take it when you can’t take it anymore.

• Gaining perspective – learning to look at life and adversity from a variety of different angles.

There’s more about perspective here as well as this little story about choosing to expand.

• Being in the moment – appreciating the here and now helps increase your gratitude and decrease worries about the future.

See how being in the moment helps increase “positivity.”

• The art of holding two opposing things at the same time – this strange tool usually has to do with experiencing two opposite emotions (joy/pain) or thoughts at the same time (“I love my kid/I can’t stand my kid right now”) AND being okay with it.

This is really a subset of acceptance, but it’s such an important little tool, I wanted to set it apart for you.

Here’s a quick list of several more tools:

• Problem-solving – sometimes you have to take action to bounce back from adversity.
• See what you can learn – the best lessons for growth and satisfaction often come from the really tough times.
• Look for the gifts – the sand that irritates the oyster eventually becomes a pearl.
• Find meaning in adversity– generate hope by seeing tough times a new way.
• Be okay with making mistakes – and that’s all there is to say about that!

And finally . . .

• Don’t give up – persistence will pay off. (You can ask my car spider.)

Takeaway points: Although there are many more tools to come, it’s good to take stock of what’s in your toolkit occasionally.

What’s in your toolbox that I haven’t mentioned yet?

If you’d like to add therapy to your resiliency toolkit, I’m available for you. Please email me or call me at 650-529-9059.

Photo courtesy of sarchi.

I had a big shock the other day. When I went to pick up my monthly prescription, the pharmacy tech hesitated before she handed it to me.

“You know how much it costs, right?” she asked.

“Sure. Thirty-five dollars,” I said confidently. The cost had been thirty-five dollars since I had met my deductible earlier in the year.

The pharmacy tech looked down at my bill and leaned forward toward me over the counter. “It’s four hundred and fifteen dollars,” she whispered.

“What?!” I nearly shouted, “That can’t be! I met my deductible a long time ago.”

The pharmacy tech looked as though this wasn’t the first time she’d received this type of reaction. “I’m sorry, ma’m,” she said, sympathetically.

I left the store and sat in my car as I called my insurance company. After fiddling with menus and tersely responding, “Yes. No.” to the many automated options, I finally sputtered, “REPRESENTATIVE!” Once I was connected to a human being, I told my story three times to help the representative understand that, yes, I had met my deductible in March. Finally, he put me on hold briefly then came back on to tell me that I had also unfortunately met my “prescription cap” for the year.

Oh. I weakly thanked him and hung up. I felt a knot of panic form in my stomach. I was sure the insurance company had made a mistake about my deductible or someone had just hit the wrong key on a computer somewhere. But it wasn’t so. Because my medication had been increased, it cost more than it had in the past and I had truly hit the top of my prescription coverage.

I sat quietly in my car as the gravity of the situation sunk in. I took the medication monthly, I had to pay the full amount in January and February each year until I met my deductible and now I was going to have to pay the full amount from September through . . . Oh, no. I would have to pay four hundred and fifteen dollars per month for half of the year.

Like many people, the recession hasn’t been particularly kind to me. I sat in my car trying to fight the panic rising from my stomach and coming up into my throat. Where was I going to find an extra four hundred dollars per month? I had to have the medication, I couldn’t just stop it.

I went back into the store and paid four hundred and fifteen dollars for less than a handful of pills. On the way home, my mind flitted through a dozen different ways that I might be able to save money here, cut expenses there. I took a deep breath and loosened my grip on the steering wheel. I noticed my anxiety and thought, “Well, I just had a big expense I wasn’t expecting, no wonder I’m freaked out.”

I started to relax even more, suddenly feeling my confidence starting to seep back in through the cracks in my anxiety. I paid attention to this new feeling. Where was this coming from?

Then I got it; I realized what I was doing. I have been noticing and writing about resiliency for so long that I had automatically engaged some of my resiliency coping skills without even thinking about it. I allowed myself to experience the natural emotions that come with an unpleasant surprise; I acknowledged that this news was freaking me out. But instead of staying with my anxiety, my mind immediately started to seek out ways to solve the problem. I also noticed my own thoughts and my physical experience and took a deep breath to relax. As my body relaxed, my mind was able to slow down and come up with even more ideas to address the situation.

By the time I arrived home, I was still feeling somewhat shaken, but I had also developed several options to pursue that would help, if not resolve, the prescription problem. At the same time, I was proud of myself for reflexively using the tools in my resiliency toolkit to help me quickly recover from an unexpected shock.

So, the moral of this story is not so much the actual tools that I used, but the fact that the practice and repetition involved in thinking about resiliency allowed me to act quickly on my own behalf.

Takeaway point: The more you think about and practice your own resiliency skills, the more prepared you will be when life throws you a curveball. So make sure to notice and be conscious of the coping skills that work for you.

How confident are you with the tools in your resiliency toolkit?

I’ve been talking via email with a friend whose teenage daughter has Asperger’s Syndrome. Our online conversation was mostly about the highs and lows of raising her neuro-diverse daughter and she shared with me many of the gifts that come along with having a special needs child.

Then, one day, this was the message in my inbox:

Today is a day in the trenches! It’s a battle and I’m bawling in my coffee. This journey is joy and pain in every aspect of those words. My knees are bloody on this life path. My guilt over wanting my life (before it was chucked under the special needs bus) back is outweighing my good will today. A special needs child “needs” almost all of the time. There is also the alienation aspect of this life in the foreground today. It’s very hard for me to relate to neuro-typical people. I hear people gripe and moan about “normal” problems and I want to cause them bodily harm! 🙂 Some days are frustration!

While my heart ached for my friend, I was also really impressed with her message because she was actually demonstrating a lot of resilience.

“What?” I can hear you asking, “Where’s the resilience in this horrible day for her?” Let’s look a little more closely at her resiliency skills.

1. Sharing pain with a friend.

Instead of keeping these really difficult, raw thoughts and emotions to herself where they might boil inside her, she shared them with me. Using friends as a pressure valve can prevent your boiling emotions from scalding your heart.

2. The art of holding two opposing things at the same time.

This is a really tricky thing to do. You can see it in the sentence This journey is joy and pain in every aspect of those words. Joy/pain, guilt/good will. It really is possible to hold two different emotions – and even opposing – emotions and be okay with it.

I’ve often heard people who are grieving say, “I’m so confused. I’m devastated that he’s gone, yet I feel relieved at the same time. Which one is the right emotion? Should I feel relief or devastation?” To which my answer is, “Yes.”  Both are appropriate and – although a weird sensation – it’s perfectly okay to experience both things at once.

3. Acknowledging emotions.

One of my favorite things about my friend’s message is that she doesn’t beat around the bush about how she’s feeling. Today is a day in the trenches . . . it’s a battle . . . my knees are bloody . . . Acceptance of your own experience and emotions is key to being resilient; the awareness allows you to be very realistic with yourself about how hard life is at the moment so you can best figure out a plan to bounce back.

4. Realizing that this is how it feels today.

Notice how my friend acknowledged her feelings of today: Today is a day in the trenches! My guilt is outweighing my good will today. Alienation is in the foreground today. Some days are frustration.

She is able to put things in perspective: today sucks. But notice how she doesn’t say, “My life is always in the trenches. I feel guilty all the time. I’m constantly isolated and alienated.” Her recognition that today is a really bad day automatically gives her hope for tomorrow. And realistically so, since she’s relying on her past experience to realize that there have been bad days in the past and she’s always made it through.

5. Using humor.

I couldn’t help smiling at some of my friend’s writing. She’s a very funny person anyway, and I could see that, even though this day was hell, her humor was still buffering it for her: I’m bawling in my coffee . . . my life was chucked under the special needs bus . . . I hear people gripe and moan about “normal” problems and I want to cause them bodily harm! It’s dark humor, but it’s humor nonetheless and a great way to take the sting off of the painful reality of her emotions and experience.

Takeaway points: Sometimes even the worst days can bring out the best resiliency skills in you. Give yourself some credit, even when you feel like life has you down for the count.

What stands out for you about my friend’s message?

Andrea gets nervous each time she steps up to the starting line with her Collie, Georgia, at agility trials.

And I say the same thing each time she sets off for their run, “Remember . . .”

“I know, I know. Breathe!” she says with only a mild air of exasperation.

 

1. Should I run or should I breathe?

Okay, maybe it is a bit annoying to frequently be reminded to “take a deep breath” as though it will solve the world’s problems. But try this right now: take a deep breath and let your shoulders sag on the exhale. There. Did you happen to notice how good the deep breath felt? It’s because you tend to breathe in a shallow way when you’re concentrating on something. Did you also notice that your shoulders were tense, maybe up around your ears? We carry a lot of tension in our shoulders and neck and muscle tension signals to the rest of the body that we are getting ready to do something, that we need to be alert and on guard. And all of this tells our sympathetic nervous systems to rev up which results in . . . shallow breathing (and a lot more.)

So, there we are at our computers, very much in fight-or-flight mode, as though we need to be ready in case a monster jumps out of the monitor at us.

Yuck. Who wants to be that alert all the time? (Although it’s probably good for security guards and long-distance truckers.) It really just causes more stress than we need for the task at hand.

The remedy? Just take that deep breath every once in awhile. Set your watch or phone to go off every 15 minutes or so to remind you to take a deep breath. Your body will get much-needed oxygen, your muscles will relax, and your calming parasympathetic system will kick in with at least a few minutes of physical and mental relief.

 

2. Take a breath, solve a problem

Being able to effectively problem-solve is an essential resiliency skill. And here’s how taking a breath can help: When you take the time to concentrate on taking a deep breath, it encourages mindfulness – the state of being aware of yourself and your surroundings. So not only is your body more relaxed by taking a breath, your mind is also more focused on the here and now and not skipping three steps ahead in a problem-solving sequence.

And – this is important – taking a breath before acting creates a pause that allows you to think through how you want to act. This can be very handy when you’re having a disagreement with someone and you need to think before saying something you might regret later.

 

And-a-half: Maybe breathing will solve the world’s problems

An old Coke commercial featured a song that said, “I’d like to teach the world to sing in perfect harmony.” Maybe if we all practiced breathing together, we could drop our differences – even for a little while – and be in perfect harmony. The website Do As One aims for just this goal. It’s a great way to take time out and practice your breathing with others.

 

Epilogue: Andrea gets Georgia excited for their turn at the agility course. Then she stands up, takes a deep breath, focuses, and off they go, enjoying the moment.

 

Takeaway points: Even though it’s old hat to “take a deep breath” to reduce stress, it really does work! And this simple action is also a great way to increase everyday resiliency.

Do you ever find yourself in fight-or-flight mode when doing routine things? When does taking a deep breath help you the most?