Archive for June, 2011

What Can Laughter Do?

I am pleased to reprint a taste of my guest post, published today on Alex Blackwell’s inspiring blog, The Bridgemaker.

“What soap is to the body, laughter is to the soul.”  Yiddish Proverb

I attended a laughter workshop recently.  I figured it was high time to experience something new, and hopefully take away some tidbits to add to my repertoire of coaching practices, healing and helping techniques.

I knew it involved some fake laughter which I was a bit skeptical about and uncomfortable with, but I figured I’d stretch myself past my discomfort and try it out.

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In thinking about transitioning and moving on, as I am about to be doing in my ‘retirement’ now, I think about this past year’s big change in having my daughter move out on her own.

Moving on takes many forms.  For Nava, my daughter with disabilities, it has meant her moving into a group home.

We as parents hopefully grow with our children.  It’s good we have many years to raise our kids so we get time to adjust to them, work through issues and make our own adjustments to situations. 

I’ve grown into accepting that this would be Nava’s version of moving out and on; that this would be her independent living.   She feels that this is her new life and that she is on her own like her sisters and friends.   And she feels great about it. 

When she moved she wanted to let people know her new address; and so we made up pretty “I Moved” cards.

I purposely don’t call her every day.  But when almost a week goes by and she doesn’t call and I ‘allow’ myself to call, I ask her why she hasn’t called all week and she says, “I’m independent now; we don’t have to speak all the time.”   We still haven’t negotiated a balance of checking in on the phone, but that’s O.K.  Her sense of pride and self-sufficiency is way more important than my need to have her call me more often.  Right now it’s on her schedule; another way of letting her be in control of her life.

My goal as a parent, specifically in light of the fact that I didn’t know how far she would be able to go, was to get  her to be as independent and as highly functional as possible.   I must say I feel good about my efforts and the outcome of her abilities.

A key parenting value has always been- and I’m sure it’s because of having Nava- to help our children be the best they  can be and reach their  potential  in whatever shape and form that takes.  And to help them feel good about who they are.  Not who we want them to be, but who they innately are.

Nava has successfully moved on in her new phase of living away from home.   She has made a good adjustment to the group home, appears to be happy there and takes pride in  being “on my own”.

I hope my new phase will mirror hers and that I will successfully adjust, be happy and productive and take pride in my ‘being on my own’, away from a structured job environment.

Any new upcoming transitions or phases in your life?  What gives you a sense of pride lately?

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I did it – the big R word – Retired.  I submitted my retirement  papers to the New York City Department of Education.  Twenty years as an early childhood social worker.  I am actually leaving ‘early’, not waiting to reach maximum benefits.  So when my workmates ask me why, my answer is “because I want to”. I’ve been thinking about it for the past couple of years and this actually feels like an apropos time.

This past year was a transition to empty-‘nesthood’ as my middle daughter moved out to a group home back in September.   It would not have been too cool to have two major life-changing events take place the same year.   I had pretty much figured I’d stay to finish out my 20th year; and as far as Nava moving into a group home, well that was up for grabs as she had been wait-listed for years.  This was when a spot became available for her.   So I’d say this is all pretty good timing.   

Getting back to the word, retire.  I don’t like that word, for me.  I prefer to conceptualize it as moving on, leaving to pursue other things.  And maybe even that new buzz word, ‘reinvent’ myself.  Although I’m not necessarily going to do something so different (although one never knows) – more coaching, writing, blogging, interviewing, book groups, workshops.   And of course  be open to what might evolve and present itself.   

It is a little scary.  After all, it’ll be the first time in about 25 years that I won’t have a structured job to go to everyday.  I  like what my coach told me recently – now I will bring forth more of my right side of my brain, the creativity, spontaneity and sheer openness to new possibilities;  and focus less on the left side, the structure  and predictability.   All I can say is, we’ll see how all this evolves. 

I guess that’s my word –  Evolve.  I have ideas and interests and things I’m excited to do and learn without formalizing goals.  I plant seedlings here and there and then I see what sprouts.  I want to be able to allow myself the comfort of not knowing exactly, the ability to be patient with the unknown and be enthralled with the ‘newness’ of it all.  I want to trust in this evolutionary process.   

Right now I feel great about my decision and am excited by this new phase of life to begin in September.    

What’s your word or concept on embarking upon something new,  or a whole new phase?

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I am pleased to reprint the beginning of my guest post, published yesterday on Tess Marshall’s wonderful blog, The Bold Life.

It’s often hard to know what to say to a friend or loved one during his/her trying times.  We don’t know the ‘right’ words.

We are uncomfortable with their pain.  We feel helpless.  And it certainly brings up our own vulnerabilities.

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I’m still reeling from the incredibly inspirational interview with Jeni Stepanek last week.  I feel drawn to continue a bit longer with this and hone in on one of Mattie’s poignant and wise- beyond- his years, comment.

“If you have enough breath to complain about anything, you have more than enough reason to give thanks about something.”  Mattie Stepanek   

If this powerful concept, stated from the mouth of a 10 year old, isn’t enough to make us take stock of all that we have to be thankful for, then we really need to shake ourselves up, take off those dark glasses and clear away those crotchety cobwebs so we can see where the light is shining.  We can then begin to illuminate for ourselves the good in our lives.   

We can always benefit from a reminder of being grateful and appreciative for what’s going right in our lives.   Even when things all seem to be going wrong.     

As a coping mechanism, it’s especially important to be able to see even the tiniest particle of light when all the lights seem like they were shut off.  We have to be able to hang on to something.  Sometimes that something is a hint of sun pushing through the clouds.

When my middle daughter, Nava, was hospitalized, in a coma on a ventilator, and darkness engulfed me, I remember saying a couple of  ‘At Leasts’.   “At least she’s in a great hospital; at least she’s got great doctors; (And that was just by chance; we didn’t get the opportunity to seek out the best doctors.)  At that time, that was my version of being thankful.

A couple of months later, when she was off the vent  and  I was able to feel and see a bit more clearly out of the crisis mode, I was able to get to the thankful part, a bit. 

I became thankful for each baby step towards survival – from waking up, to moving a finger, to being trached, to finally moving on to a rehab hospital.

When I lived up in the rehab hospital with Nava, I was truly grateful that my younger daughter, Penina, got along with her step-father, Alan.  It was just the two of them for months, at home together.  It could’ve been a disaster, but it wasn’t.  At least I had peace of mind on that front. 

Finding some good points for which to be thankful,  definitely helps one go through a tough time. 

It’s all too easy to find the negative and the complaints.  And we’re certainly all good at that.   But to start to exercise our positive muscle so we use it more, let’s try some homework:

We can end our day by writing down three things we are thankful for, however small they might be. 

Instead of complaining to a supervisor about the lousy service we got from an employee, why not  call or write a note to the supervisor complimenting a good worker. 

What thanks can you give when going through a rough time?    

How can you exercise your ‘thankful’ muscle?

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 … “Go forth vowing to choose gently, celebrating life each day.

 Go forth vowing to choose wisely, playing after every storm.”

 From “Choice Vows” by Mattie J.T. Stepanek

In Loving through Heartsongs (Hyperion, 2003)

I am honored to have the privilege of speaking to Jeni Stepanek, an incredibly courageous woman who lives life to the fullest, despite incomprehensible adversity.  Dr. Stepanek lost her 4 children to a rare form of muscular dystrophy, from which she herself also suffers.  Her ability to rise above these odds and create a life of meaning and joy is truly heroic.

It’s no wonder that her son Mattie became the inspirational peacemaker and poet who was chosen by Oprah as one of her “Most Memorable Guests.”  He continues to be a teacher to the world through his profound words of poetry; and Mom continues to carry forth her son’s thriving philosophy of life through her own teachings and work directing the Mattie J.T. Stepanek Foundation, spreading Mattie’s message of hope and peace.

What personal qualities have helped you carry on and move in a positive direction?

Faith. I believe there is a higher power; that God is present amid suffering as well as celebration. People are quick to say ‘thank you God’ when they win the game, but to say ‘where was God’ when they lose the game.  That’s not what God is about.  God is about being present with us in triumph and tragedy.  So I have a very deep faith.

I also think I have resilience – which is not the same as optimism, as in just keep a stiff upper lip.  Resilience is making a choice to move forward despite the fact that in all probability I will be facing burdens that are balanced in with my blessings.

The third quality I have is an incredible community of support.  If I can’t find a reason to take that next breath with purpose, there are other people willing to offer me a reason. I just have to allow that.

A lot of people have a community of support and they don’t realize it because they are not looking for it; they’re not open to it.  The easiest thing would be to just lie in my bed, miserable with my disability, miserable with my empty lap, miserable with what’s happening if you look at the actual facts of my life.

But that’s not what life is about.  So it is a choice to seek hope in each moment; and sometimes I have to make that choice when I open my eyes in the morning and then a gazillion times throughout the day.  But that choice can only be made by me.  And I’ve had times that there are people who would be there to help me, but if I’m feeling too miserable about myself or my life , I don’t always see the community of support that’s out there willing to help. It really is a two-way street.  It‘s not just about people giving; it’s about being able to receive, and recognizing that we have something to give.  Even as I sit here in a wheelchair and on a ventilator, I have something to offer. We have to do our work in it also.

Did you go through a period of self-pity?

No, I’ve never been through times of self-pity. I have been through, and will probably go through, many times of misery though.  And that’s very different.  I’ve never felt, ‘oh, why me’.  Pity is when you feel bad, you feel helpless, you do nothing and you don’t seek answers.  Misery is when your life has so many storms that it’s hard to figure out how to ‘play after the storm’, as Mattie’s philosophy was, because the storm doesn’t end. I’ve had my great share of miserable moments and I probably will have many more, but I go back to the blessings of faith and resilience, which is choosing hope, choosing to reflect God in the moment, and accepting a community of support.

What a great distinction between self-pity and misery; because self-pity keeps us in that hole and keeps us with the why’s, but we can’t answer the why’s.

No, we can’t. And it’s O.K. to question why.  Anybody who loses a loved one, or faces a personal tragedy, whether it’s disability or loss of a job or loss of a friendship, anything that tears at your heart or your mind or spirit, you have a right to be sad and angry and to question why – or as Dr. Phil says, ‘you own your feelings’.  Sadness is real; anger, frustration, misery are real.  But pity is just getting stuck in that and not looking to say okay.  I didn’t choose this life, but I can choose how I reflect this life on to other people and into the future in a way that still shows that God is present and life is worthy.  In some moments it may not seem like life is worthy, but I know it is and this too shall pass.

Was there a specific moment or epiphany that helped guide you to this better place mentally and psychologically, or did it evolve over time?

Largely it has evolved. I didn’t suddenly go ‘oh my gosh I just need to choose hope.’  It really is something that you grow in.  We grow in faith, we grow in resilience and we grow in the community of support. 

I do have to say I had many ‘aha moments’ with my son Mattie, right down to the final sentence he ever spoke within a couple of days of dying – ‘choose to inhale, don’t breathe simply to exist.’  He was quite worried about how I’d go on because I had said ‘you can’t die, you’re my everything, I love you, I adore you, you’re my son, my student, my teacher, my playmate, my prayer partner, my best friend.’  We were very close. I had said ‘you cannot leave me; I can’t do this.’ But death got closer and closer.  He was really trying to hang on for me.  He looked at me and said, ‘choose to inhale, don’t breathe simply to exist.’  And I thought about it.  It was about a day or so later and I looked at him and said, ‘you know what, I will choose to inhale.  It won’t be easy, but it will be worthy and I will be okay. You can rest.’  He said ‘yes’ and within minutes he was gone.

I gave him a gift that broke my heart but lifted his spirit.

What are your day-to-day coping skills that keep you afloat?

If I get stuck in a moment where I’m feeling pretty miserable, I really try to stop and instead of thinking about why I’m miserable and how miserable I am, I try to think about who out there needs something I might still have to offer.  And it may be that I go through my email inbox and find somebody that I might not have given a long response, and I go back and take the time to answer at length.  When I have time to be miserable, it means not a lot is happening in my life.  I’ll go back to things that are worthy in my life and give somebody something; I’ll give them a gift, and that helps me realize I have something to offer.

That’s one coping skill – to put my misery aside and deliberately choose to try to make some difference that is good for someone else.

Another thing I’ll do is photography.  I’ll go outside with a camera and find things to take photographs of because I love amateur photography. And then I’ll come back in and find Mattie quotes, and put them together and make gifts for people, such as stationary.

 What thoughts propel you forward?

I wake each day with, ‘thank You God, I woke up!’ on my breath.  When I wake up and realize, oh my, I have a whole new day, I am thrilled. And I know I’m going to hurt physically, I know I’m going to miss my children, I know I’m going to wonder what happens if something unforeseen happens and I have an extra bill and I can’t make ends meet this month.  I still honestly wake up every morning going ah, thank you God, life is amazing.  Thank you for giving me another day to reflect Your presence.

You can continue to feel like that despite losing so much?

Absolutely. That does not mean that I don’t miss my children, that I don’t cry.  I would say I cry at least once every single day.  I buried four children; I did not know I was passing on a disease to them when I was giving birth to them.  I’m now dying from the same disease.  I am divorced.  I don’t have a regular job.  But then I think, oh my gosh, I’m awake, I’m taking a breath.  I live in a beautiful house because of my son; I overlook a park named in honor of my son.  I see what grew from his life.  I’m not looking back on what was; I’m looking forward.  I am grateful for that.

A quote from Mattie that is in the book I wrote about his life (“Messenger: The Legacy of Mattie J.T. Stepanek and Heartsongs) is, “If you have enough breath to complain about anything, you have more than enough reason to give thanks about something.”  When he said at age 10 after realizing that his body was dying, this is when I first started saying if I’ve got another breath, I’m going to use it to give thanks for something.  There are mornings when I wake up and I say thank you God, and I say please help me get through today and help me reflect that you’re with us even when we’re suffering. Because there are days with some extreme pain in it.  Those are the thoughts that I wake up with to really start with appreciation.

It sounds like the biggest thing that keeps you going is such a strong sense of purpose and meaning.

Yes, but it’s not like meaning and purpose is placed in front of my face and I just have to put my hands out and there it is.  I have to search for it, I have to create it; I have to make meaning.

People will look at Mattie’s life and say, ‘wow, that’s a life with purpose’.  I have a son named Stevie who died at age 6 months and 2 days.  His life had just as much meaning and purpose.  He had as much reason to be here as Mattie, who lived almost 14 years, as did my daughter Katie and my son Jamie.  I have to search harder to figure out what is the meaning of life when a child lives for barely 6 months, and those 6 months are filled with suffering.  But I guarantee you there was meaning and there continues to be meaning.  Mattie was and is who he was and is because of his siblings.  He appreciated life at a deep, deep level because he was the youngest.  He had the gift of longevity because he was the baby.  It’s not that the first three came so that Mattie could live; but because the first three came, Mattie did live.  We accept that, and celebrate meaning within that truth.

What advice would you offer someone going through a difficult time?

That’s probably the hardest question of all. I’m good at telling you what I do, but to offer advice to others, I’d have to be in their mind and heart and spirit.

The best advice would be to know that you’re not alone, even if you don’t know someone in your situation, there is somebody in this world that you may or may not ever meet that is feeling the same pain as you. You’re not alone.

And two: there is something you can do with this moment that places meaning in some next moment; and maybe it’s not meaning for you, maybe you’re too much in pain to see anything good about your life.  But there’s something you can do for someone else.  And that’s what God calls all of us to do.  Simply love your neighbors.  And you can love your neighbor by doing something good even if you’re feeling horrible.  Maybe it’s just simply a smile.  Just know that you’re not alone and that you do matter.

Advice is a very tricky thing.  It makes it sound like I have the answers and I don’t.  And that someone can write out a prescription that heals all spirits.  And there is no such thing.  Advice sounds like it’s a fix.  If you offer advice and somebody is not ready for that, then they can feel even worse about themselves.  I try not to offer advice.  Advice is what you get from your doctor who can say, ‘your foot hurts, here do this and it may help’.  Instead, I can offer a message; I can share what helps me, I can share what I’ve heard from others that has helped them.

Is there anything else you’d like to share or express?

There’s something about Mattie’s life, something about the way he lived and chose and spoke that inspires people to say, ‘I do have problems but I can make these same choices. I can think beyond myself; I can think into the next moment.’

I would encourage people to learn more about Mattie – whether it’s visiting the website or reading the Messenger book or reading a poem or essay he wrote in any of his seven books.

For more information, please visit: www.mattieonline.com

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