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Archive for June, 2012

Hiking – a mindful, focused, present-oriented, small step activity.  I must be and do all of these as I put one foot in front of the other along the unpredictable terrain.  Especially on a steep ascent or steeply declining descent where I step with intention so my feet grip the earth, the mental concentration is intense.   I must remind myself to stop and look up at the surrounding beauty or I miss half the reason for hiking in this most breathtaking nature that has been presented to us.

When my mind is able to relax a bit and wander away from the immediacy of each step, I think about all the metaphors there is here for life itself.

  • Small steps gets us where we’re going.  The persistent steps are what make the big difference.  They take us to great places.
  • The fragility and unpredictability of life is out there with each step.  There could be a loose rock underfoot, a falling rock seemingly out of nowhere, a snow bridge that appears thick and sturdy and upon stepping cracks under our feet.  We all know life’s challenges oftentimes appear out of left field and they can hit hard. 
  • Stop to look up and see all that’s around us.  A wonderful excerpt from one of my favorite children’s book, The Phantom Tollbooth, portrays this beautifully:

                “… as you know, the most important reason for going from one place to another is to see what’s in between, and they took great pleasure in doing just that.   Then one day someone discovered that if you walked as fast as possible and looked at nothing but your shoes you would arrive at your destination much more quickly.  Soon everyone was doing it.  They all rushed down the avenues and hurried along the boulevards seeing nothing of the wonders and beauties of their city as they went.”             

                “…No one paid any attention to how things looked, and as they moved faster and faster everything grew uglier and dirtier, and as everything grew uglier and dirtier they moved faster and faster, and at last a very strange thing began to happen.  Because nobody cared, the city began to disappear.  Day by day the buildings grew fainter and fainter, and the streets faded away, until at last it was entirely invisible.  There was nothing to see at all.”

  • It’s often better not knowing the future, not knowing ahead of time what we’re going to be up against.  On one of our hikes, we ended up climbing 3500 feet.  If our guide had told us that before we started, we would’ve said, “no way, we can’t do that.”  If I would’ve known ahead of time that my daughter would be on a ventilator for three months and in the hospital for nine more months, I would’ve said, “I won’t be able to handle that; I won’t be able to be by her side and function for that long under such stress and anguish.” 

                And yet we do it.  We put one foot in front of the other and climb on, and carry on.  Our mind doesn’t have the chance (ahead of time) to warn us off by telling us, “no, no you won’t be able to do that.” And so we plow onward.  And we do it, huffing and puffing, with rest breaks as needed.  

  • We have so little control {in the externals of life}.   The forces of nature are strongWe can control how we function and manage with what we have and are given.  We can make decisions to the best of our ability at the time.  The rest is left to the wind and to the forces that be. 
  • We’re not there till we’re there.  Just when I think I’m in the clear after a long and steep descent and am finally on level ground in the village, my slippery hiking shoe souls take me for a quick little slide on the flat and study pavement. 
  • There’s something way bigger than us out there.  Being surrounded by grandiose mountains is an amazing reminder that we inhabit a grand earth.   There’s a majesty of nature, higher power, God or whatever you choose to call it to be, that embraces us.  Let’s embrace it and each other with the beauty that is out there.

Thanks for stopping by.  If you feel moved, please share in the Comments.  If you don’t, you can comment anyway, and subscribe if you haven’t already. 

A fall on a snow bridge as it cracked over a waterfall.

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Today’s posting is my guest post for the Tiny Buddha inspirational blog.  I am very happy to share this piece with you.  It is a theme that has been with me for years.  We often write about what we struggle with.  Here is my angst with the Why question and how I’ve come to terms with it.

“We all have problems.  The way we solve them is what makes us different.”  Unknown

I used to be a “why” person.  Why you ask?  Because after receiving my {middle} daughter’s diagnosis of a neurological condition, I got really hooked into the “why me” mode, and it just ate away at every fiber of my core.

I obsessed over “why”.  Why did it happen?  I needed to make sense out of a senseless fluke of nature.

Click here to continue reading this post over at Tiny Buddha.

 

It’s great to go away on vacation and it’s nice to return home with wonderful experiences soon to become memories.  So I’m back  after a two week hiatus rejuvenated from some gorgeous hiking in the Swiss Alps.  Nature is a wonderful get-a-way; it clears away the staleness inside and out.   

Thanks for stopping by and do go over to the wonderful Tiny Buddha site.  Lori Deschene continues to impact a tremendous number of people with her inspirational daily writing.

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My interview with Meredith Vieira on living with chronic illness {in the family} made me think back to my family’s time when we lived through my daughter, Nava’s, chronic condition of ulcerative colitis.  Until it get managed well with the proper medicines, it was obviously difficult and emotionally painful to watch a loved one (in this case an 11 year old child) writhe in pain, wake up in the middle of the night crying out on blood-streaked sheets and lose a lot of weight. 

During the acute stage of her illness, there was no escaping the fact that life revolved around sickness.  It was only when it began to finally get under control with steroids and then maintained with colitis medication that I could strive towards regaining some semblance of normalcy in our home.  I did not want illness to define Nava nor our family’s life.  Yes, it was a component of her and our life but it wasn’t the entirety.  I wanted to make life bigger and broader than the colitis. 

It became relatively easy to do once the acuteness of the disease went into quiet mode with a fairly small regimen of daily pills, for which Navi became completely responsible.   For six years the illness kept a low profile; Nava was fine and healthy.  And then all hell broke loose when a major flare-up that couldn’t be controlled set off a medical crisis (which I’ve written much about). 

Fast forward – Nava is ‘cured’ of ulcerative colitis as she had her colon removed and has a permanent ostomy.   She has her life back, her health back and lives well.  She handles her ostomy herself without a peep of complaint. 

So how do you live with a chronic condition? 

  • As Ms. Vieira stated, with openness and honesty.    I used to talk to my girls all the time about how scary it was for Navi and for all of us; about how unfair it seemed that she had disabilities and then had to have a medical condition on top of that.  And when Navi would cry out, there was a lot of acknowledging of, “I know how horrible this is and how scary it is.”  There were no secrets.  Pain shows itself.

       Emotional pain has to be expressed.  Tears need to flow.  That’s what frees us up to carry on with a wee bit of a lighter load.

       I certainly had my share of venting, ‘why Navi’; however my own pity parties were held under my covers at night. 

  • When those calm periods of health are there, run with it.  Celebrate, play, have fun, take advantage and go with it.  We’d grow our memories of good times by making sure to play and have fun.  We’d go out and do, and engage.  Every Sunday was fun day.  We’d go places and do great stuff.   From apple-picking to row boating to Renaissance Fairs to ice-skating, we were out engaging in life.

       And when Navi didn’t feel up to it, I’d make sure her sisters were doing their fun things. 

  • Maintain as normal a routine as possible.  Illness brings forth the feeling that life is out of our control; it’s running us over.  And it is and it does.  Therefore some sense of predictability is crucial.  Kids function much better when they have structure and routine.  I say, we all function better with that.  We need to feel we have some ‘say’ in our world.  It’s securing to know some things stay the same, especially when the big stuff goes out of whack- in this case the health of someone.    

These are a few things that helped us through our travails of chronic illness.  If you’ve gone through any sort of ongoing condition with a loved one (or yourself), I’d love to hear what helped get you through.

I will not be posting for the next two weeks as I will be away on vacation.

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I am so excited to put out this month’s interview with Meredith Vieira.   As most of you know Ms. Vieira is a journalist and TV personality.   She was the original talk show host of The View and co-hosted the Today show, the NBC early morning news program.   She currently hosts the TV game show, Who Wants To Be A Millionaire, as well as being a frequent contributor to other news shows.

I had the pleasure of meeting Ms. Vieira at a book event at the JCC in Manhattan where she interviewed  her friend/author of a new book.   At the reception afterwards, she graciously accepted my request for a blog interview.   Speaking to her on the phone was like talking to a good old friend.

The issue I focused on with Ms. Vieira is one that is unfortunately all too prevalent – that of chronic illness;  and more specifically its impact upon the family.  Richard Cohen, Ms. Vieira’s husband, has been living with multiple sclerosis for more than 30 years.  Mr. Cohen is a TV producer and writer.  He writes a most reflective and insightful column on chronic illness for AARP MagazineHe has also written two books. (referred to later on)   

It becomes a ‘family affair’ to live and cope with the daily struggles and difficulties of a chronic and debilitating condition.  The challenge here is to live as best as one can, with it and despite it; and Ms. Vieira and Mr. Cohen do it well together. 

I hope you get lots of take-aways from this most down-to-earth interview.   I am appreciative of Ms. Vieira’s openness and authenticity as she brings us into her family’s life, providing insight and inspiration on coping and living with chronic illness.  

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

For me what has helped is for Richard to be open about his illness. For a very long time he was closed.  Partly that was out of concern about how people would react to him, professionally and personally.  He kept his disease from people. That made it harder to deal with as a couple.  You knew you were part of this masking and I don’t think that’s healthy for the other person involved- the partner.  I understood it and I didn’t force the issue but I was glad when Richard decided to be honest with people.  That was the result of our older son as a very little boy,at 6 or 7, asking me late one night when the lights were off in his room, ‘what’s the matter with Dad?’  Kids are so smart.  I don’t remember what I said exactly in the moment to comfort him-something like that Dad was fine and in the morning we’d all talk about it.  The next day we did; we explained it in terms a child could understand. It was after that that Richard realized, “I want to be open about this now.”  So I think the openness has helped me.  I’m all for not burying feelings.  I think it’s much better to get it out.

A sense of humor:  We both have a pretty good sense of humor.  We can laugh at the absurd.  And when you have this kind of illness, there are moments that are really absurd.  You can either get very depressed which is understandable or you can try to shake it off as best you can, put it in perspective and move on.  I think humor helps us put things in perspective.  That has been a great coping mechanism for me as well as for Richard.  He often will lead the way.  He’ll have an episode where maybe he drops something and he gets very angry at himself.  And then he’ll make a joke; and that allows me, that gives me permission to make a joke back.  Nine times out of ten we reach that point and I think that has been tremendously helpful.

Friends:   This comes with openness. I am totally comfortable leaning on friends. We have wonderful friends who not only ask Richard how he is doing, but will ask me how I’m doing.  This speaks to the whole notion of family illness.  This is  an important message, if I was to get out anything, it is –  for those who know someone with chronic illness, ‘don’t be afraid to ask’.  We appreciate it.  A lot of people are scared to bring it up because they may feel they’re walking on egg shells around people who are chronically ill. My experience has been that most people in that situation like when it’s acknowledged and they have that opportunity to speak about it.

      2.   Did you go through a period of self-pity?  If so, what helped lift you out?

 Sure I have days when Richard will say ‘why me’ and I’ll say to myself, ‘why me’?  I knew about Richard’s illness before I married him; it wasn’t sprung on me.  He was diagnosed with MS when he was 25.  And I married him when I was 33.  He’s five years older than me.

 We used to run all the time together.  We can’t do that anymore.  I love things like skiing, things that he can’t do.  There are moments when we’re talking about a vacation and we’re limited and then I’ll feel , ‘oh I really want to do that’. It’s one of those passing things.  But I also think that’s O.K.  It’s O.K to have a pity party every once- in- a-while, just let it out.  Because there is loss–  there’s physical loss and emotional loss. There’s that kind of day-to-day loss and it’s alright to feel bad about that as long as you can put it in perspective; in the scheme of things that ‘ain’t’ the biggest issue. 

      3.   Please speak here to the issue of caretaking 

Caregiver is the word I use.  Richard is not in the position where he needs that kind of attention.  Because he has secondary MS, he has less ability to use his hands and eye-sight than he used to. So there are times when I am his hands or his sight – for reading a menu, tying a shoe or doing that top button on a shirt.  But I’m certainly not a full-time caregiver.  We sort of take care of each other.

I think a lot of people who are caregivers feel tremendous guilt when they allow their personal feelings to rise above those of their spouse.  It’s sort of like ‘how dare you.  That’s the person who’s ill, not you; so what right do you have?’  And I think you have every right, whatever your emotions are.

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

 I understood enough about MS going into the marriage in part because my dad was a doctor.  I went to appointments with Richard and I saw people younger than him who were already  wheelchair-bound.  I knew the potential progression of the illness.  It’s so unpredictable.  Will Richard end up in a wheelchair or worse – bedridden?  Is it possible; sure it is, but we have no way of knowing that’s going to be the outcome.  Every individual is different.  I knew a possible trajectory of the illness heading into it.  It sounds so trite but that expression about being hit by a bus tomorrow.  You just don’t know in life.   He could dive off a diving board and break his neck and be a guadrapalegic.  I could get ill.  You can’t live your life on the ‘what ifs’.   Because you’d never do anything.  So to me it was worth it. 

This is just a part of what we deal with.  Everybody has their stuff.  This is our stuff. 

There’s that wonderful story of everyone putting their troubles in a bag and throwing them all in a pile, and all you want is your own bag back.  Because it’s familiar.

Richard especially has had a bumb deal because he also has had two bouts of colon cancer.  It hasn’t only been MS for him.  I did have a little conversation with God after the second bout of cancer.  I said, “really, really, this guy doesn’t deserve all this.” I thought that was a cheap shot, just really unnecessary; we got it.(the lesson) 

Take away that part of our life and there are unbelievable pluses.  It’s led Richard to a point in terms of his own reflection where he was able to write two beautiful books about chronic illness.  Write what you know.  And help people.  His books have really helped people.  To be able to have that gift where you can actually change somebody’s life, that’s a pretty amazing gift.  It came at a cost, but it’s still an amazing gift. 

When he wrote about it, he was able to release and let go.  I think it was very empowering for him and I think it gave him a strength he didn’t have before.  MS does a real number on you where you feel like less of a man.  This gave him some of his self-worth back.  It allowed him to articulate it.  He had buried it.  When he started to write about it, it helped him deal better with his illness and face it. He talks a lot about denial and he thinks denial is a very good thing.  For the longest time he denied the illness and said, “I don’t care; they say I can’t be a producer, I’ll be a producer.”  It worked for him up to a certain point; but by burying it he wasn’t allowing himself to feel everything he needed to feel and to face everything he needed to face.

 Writing his first book, his memoir, Blindsided, allowed him to do it in a safe way because he is a writer.  It was like therapy.  His second book is Strong at the Broken Places is a profile of five people with chronic illness.   His third book is coming out in October and it has nothing to do with illness.  It’s called, I Want to Kill the Dog.  It’s hysterical.  It’s about our history with our pets in our family.  It’s freedom again.  He said, “I don’t want to be known just as the disability author.  There’s more to me.”  He’s almost come full circle.  “MS doesn’t totally define me; it’s part of my life, it’s not all of my life.”  He’s a very funny guy and so he wrote this very funny book.

      5.   Any specific day-to-day coping skills?

 I just kind of live day-to-day.  Today was a good day or maybe today wasn’t the best day, but tomorrow might be better.  That seems to work best for me.  We’re still in that stage where that’s doable.  When you are living with any kind of illness, you really learn to appreciate the here and now.  It takes on an added value because you’re lucky to have it.  If there’s any coping mechanism  that’s what it is: try to be as much in the moment as you can be and enjoy it; or understand  if it’s not great, then this too shall pass. 

      6.   What advice would you offer people going through their own difficult situation?

In our family it has been sense of humor and honesty.

It’s important to be able to communicateIllness is a family affair.  You need to keep the communication going and open on all sides.  And certainly if you have kids as well.  As I said, keeping this from our kids was a little off because kids in general are so attuned to things.

Build that group of friends, that support system around you.  Go for it.  Don’t be afraid.  Don’t feel that you’re a burden to other people.  And don’t be ashamed of illness.  What you’ll discover is everybody else has their own thing.  People don’t like to talk about stuff.  They hide it but if you’re open and you say you need help, people will be there for you.  It’s important to know they’re there.  It’s like it takes a village; when there’s illness it takes a village too. Most people have been phenomenal.

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