Toeing The Elusive Line of Life

I am always trying to pin down that elusive line between doing too much and not engaging enough.  Dancing just over the edge into the land of “I am going to enjoy this adventure today even though I will ‘pay’ for it later” and standing at safe distance back, “forgoing opportunities for the sake of protecting my body from the ‘over-do’.”

To me this line is LIFE.

And I am not ready to give up on life yet; to fade into the background, observing others from behind my own personal protective observation glass.

Yes, this option ensures a more stable physical state of being. But it doesn’t guarantee it. I am just as likely to experience an unexpected (I was going to say “unplanned for,” but aren’t they all?!) flare of my physical symptoms after days resting “safely” on my couch.

And there is always one thing that suffers from my hesitancy to participate… my emotional well-being.

So it all comes down to another elusive concept: BALANCE.

I don’t think this is a plight just of the chronically ill.  We may suffer more serious consequences for misjudging our abilities to participate, but I know just as many well-bodied friends who also struggle with this.  Their “price” may just look different: stress, fatigue, or loss of time.

As I tiptoe around my Line of Life, I am getting better acquainted with my limits. For me, I know I will pay a steep price, so I weigh my options and choose the ones that are the most appealing and unique. 

I now pause before I make any commitment (I used to “over-commit” to everything for fear of saying no, only to have to constantly cancel at the last minute, frustrating everyone).

I check in with myself- mind, body and spirit.  I take my own set of vitals, so to speak.

And, no matter what my decision is, I try to clearly communicate with the invitee. I think the guidelines I have set up for myself can be applied to a wide range of situations and people.

It usually comes down to three categories:

1. “I’m sorry, I have to decline this time. But please don’t let this keep you from asking me in the future [big fear=being “forgotten”].  My physical well- or unwell-being is constantly fluctuating.” (insert your limits: time; commitments; family obligations; job stress; etc.).
2. “If it’s okay, I am going to have to wait and decide nearer to or on the day of.  I’m just not sure how I’ll be feeling from day to day right now and I don’t want to over-commit.”
3. OR: “I would love to accept! I am planning on being able to participate but if my body takes a down-turn, I may have to change plans at the last minute.  Are you okay with that?”

I have discovered that the honest approach best serves myself and others. Most of us want to “people please” and in doing so can create an environment of always saying “yes,” leading to feelings of stress and resentment later or a constant cycle of saying yes and then having to change our minds/plans.

By giving people an open look into your life, you are showing trust in the relationship.  As well, I try to always give people the option of letting me know if last-minute changes are uncomfortable for them.  Of course I wish everyone could be supremely flexible to my needs. But some cannot. And this is all part of accepting both my and others’ limitations.

You’ll also begin to discover the friends who truly do understand and are willing to adjust the typical “friendship guidelines” to maintain a relationship with you and those that are just “good time friends.” And that’s okay.

The week-end before last was one of those “seize the moment” opportunities for me.  A friend spontaneously invited me on Thursday to accompany her to Pittsburgh, PA for a one-of-a-kind puppet play by Heather Henson (Jim’s daughter- yes, The Muppets’ Jim!). Now, this was a huge risk for me. It was for just one night and would require a minimum drive of 6 hours both ways. Two “no-no’s” in my typical Boundary Box. But sometimes boundaries are meant to be broken, and this was one of those times.

Not only was it an amazing adventure and bonding experience with a dear girlfriend, it provided me a chance to be honest about my chronic illness in a way I have not before.  Traveling that close with some requires intimacy and vulnerability. And I was proud of myself for not hiding behind the mask of, “I’m okay.”

She knew I had to make many rest and stretch stops.  She saw my feet and ankles swell to the size of Nerf balls. She observed my nightly ritual of 20+ medications. She listened to me when I explained the complexity and history of my disease. She witnessed the “sudden coming” of a severe migraine. She saw me grow breathless because of my pericarditis (fluid around the heart) and the necessity of many “sit and rest” periods as we trekked around the city.

She saw the all of me. And she embraced and accepted me as I am.

Yes, I’m paying the steep price of admission still now 7 days post, but I wouldn’t have changed a thing about this experience. Can I always make this choice? No. But I am also not going to let my fears get in the way of considering similar spontaneous opportunities in the future. I used to always live my life this way… seizing crazy last-minute excursions left and right. And I forgot how much I love that.

I forgot what it is like to not only dip my toe over the edge into the Waters of Life, but to plunge head first into the icy chill of the thrill only to come up breathless by embracing the All of Life.

Where are you making choices in your life that serve not only your physical and mental needs, but also your spiritual and emotional needs? Perhaps you aren’t shying away from “frivolous experiences” because of the limitations of an illness, but because you are overwhelmed and stressed by the sheer complexity of living and balancing life, work and family.

Where and when can you throw caution to the wind, even for just an hour, and do something just for the sake of doing it?

Go on… life’s waiting for you!

My 2014 Bucket List is Filled With JOY!

 

As you know, I have been mulling over a 2014 Bucket List for the last month.  I want to set my intention for the New Year, so that I expect and accept abundance from the Universe.  But I find myself wary of “asking for too much.”  You know the old fear of “setting my expectations too high only to feel disappointment in the end:” disappointment in the limitations of my physical body, financial resources, time, energy . . .

But I also know from experience that if I don’t open myself up to the possibility of achieving greatness, I will never achieve greatness.  If I don’t trust in my mind, body and spirit to reach beyond the familiar into the stellar, how do I expect the Universe (or God) to?  That by setting my intention and sending it on the wings of my new year’s prayers, I am sending a clear message to God and the Universe that I believe in myself.  That I believe in my hopes and my dreams.

So I decided to attack this personal assignment with gusto! – To choose some goals that my deepest heart desires, reaching just beyond my comfort zone, to where life truly begins.

In the midst of this contemplative meditation, I was gifted resources by my monthly Soul Matters group.  This month is “Living a Life of Character,” the goal being to shift our perspective from a flaw-focused view of “You should be better this year” (IE- fix your imperfections, change those bad habits) to one of building character from a perspective of joy.  I love that!

One of the suggested videos for viewing is a TED talk called “Rethinking Your Bucket List:”

http://www.karmatube.org/videos.php?id=4029

Hospice counselor, Kathleen Taylor, discusses the shift of perspective that happens at the end of life (and can also be mimicked by those undergoing severe/life-changing illness).  That we, as humans, experience three phases in our life on the path to discovering our authentic selves: Youth = fearless, we set our course for life; Middle = we start to question that course; and End = we find answers about that course.

A renowned study discovered that the #1 regret of the dying is: “I wish I had the courage to live life true to myself and not the life that others expected of me.”

Dying (and chronic illness) teaches us that it is never too late to shed what is false and become who we are truly meant to be (authentic self).  She challenges us to think of it in reverse; “that it is never too soon to shed what is false and. . .”

Kathleen suggests we reverse the existential question, “What am I supposed to be doing with my life” into “Who am I being with me life?”  If you are living a life of authentic character, you can let go of the confines of what you should be doing, because doing flows naturally from being.  As Elizabeth Gilbert says, “God shows up in us, as us.”

Unfortunately, this spiritual revelation usually doesn’t occur until the time of death.  When people have no time or strength left to be anything other than they truly are, they become their authentic self. Psychologists have studied and identified a developmental stage of growth that actually occurs at the end of life: people “find a deeper sense of self and finally awaken to the preciousness of time.”

Haven’t you ever encountered an ill person who is completely open and honest; who doesn’t fear changing their mind; who freely apologizes and forgives; who expresses love wherever and whenever; and who finds joy, even in the smallest of moments?

Kathleen Taylor states that as the body slows down, perspective shifts, and the person’s mind, heart and soul actually expands. Neil Sulanger, wrote as his ALS progressed, “As I diminished, I grew.  As I lost so much, I finally started to find myself.”

I have experienced this; when I was teetering on the edge of death.  I’ve just forgotten.  But my own experience combined with this spiritual exercise has reminded me that we all have the capacity to find ourselves.  So, my Bucket List is going to be a combination of the traditional (physical acts) and the existential (character trait).  I am going to focus on who I uniquely am and celebrating that… finding joy in all the ways I can and will contribute to the world.

My list includes ways I will nurture my creativity and curiosity; ways I will expand my knowledge of myself and the world; activities that will change my perspective and challenge my bravery; opportunities to expand my capacity to love and be loved; ways to be a leader and to promote justice; prospects for forgiveness and humility; and many moments for transcendence: to appreciate beauty, foster hope, and increase my spirituality.

I am including my list with the caveat that it is not static; my list is not set in stone.  I am keeping it open and flexible for the abundance of opportunities that are sure to come my way this year, as long as I keep my heart open to receiving them!

Please share your bucket list experiences too!!

MY 2014 BUCKET LIST:

1. Trip to Arizona (get health evaluation at clinic and visit healing-energy sites)
2. Get my driver’s license
3. Take Hubby on surprise getaway (like he has so often done for me!)
4. Take 2 art courses: one to hone existing skills (advanced drawing or painting) and one in a “new” medium (stained glass or silver work)
5. Return to Cape Cod for vacation
6. Rent a speed boat
7. Hang-glide or para-glide
8. Bond with my sister-in-laws
9. Take my nephew on an Auntie-Nephew adventure (as yet to be defined!)
10. Try Paleo diet and document dietary intake/symptoms
11. Go deep-woods yurting
12. Learn Reiki
13. Go on trip to Lily Dale (spiritualist center) with my girlfriends
14. Get my art featured in a coffee shop, restaurant or gallery
15. Engage in volunteer activities with young children
16. Write blog entries at least 3x/wk. so by end of year have enough for a book, if want
17. Start a Gratitude Jar filled with moments of joy, hope, beauty and love that I will review at the end of year
18. 18.  Love widely, listen deeply, encourage others, value self, embrace joy, spread love & light, embody hope, express creatively, laugh with abandon, forgive from a deep-well of kindness, practice compassion, and be the gift as much as I see the gift of this world.

Finding New Avenues of Joy: What’s Your Machu Picchu?

Finding new avenues of joy… several months ago I randomly (perhaps not so “random” after all!) had the T.V. on during a Good Morning America segment on the NFL player, Steve Gleason.  He’s a New Orleans Saints’ hero whose life has changed, all because of the devastating disease, ALS (Lou Gherig’s).  Yet, he does not view his life as a devastation… when told he needed to “prepare himself to die,” his first and only thought was, “I am going to prepare to live!”

Although it has been 6 months since I first viewed this stunning story, it has never strayed far from my thoughts.  I’ve wanted to share it with others, but until today, have not been able to “find” it on the internet.  For a while, I thought perhaps it had been one vivid, prophetic dream!

Then I awoke this morning thinking of “bucket lists,” and once again, the empowering tale of this man came to mind.  I began my futile searching again, but this time I must have strung together the right combination of words, because it appeared at the very top of my search results.  I have faith that there is a reason today was the day I finally re-discovered this tale of strength, perseverance, and above all, JOY.

The idea of creating an annual “Bucket List” has been tumbling around my daily thoughts.  Not sure if I wanted to jump on this trendy bandwagon, I have resisted this idea.  Yet, there is something so appealing about following others yearly journeys as they check things off their bucket list.  As I read others, I am surprised and, admittedly, intimidated by the audacity of their goals.  My mind immediately goes to all the reasons why this will not work for me… all my limitations: not enough money, not enough time, not enough physical well-being, on and on and on!

I think, why set myself up for failure?  But then there is that little intuitive voice that never steers me wrong saying, “why not set yourself up for success?”  Each bucket list is a personal endeavor; it can be shaped to fit my unique set of circumstances, needs, and dreams.  By setting goals, I will be more apt to make a game-plan to make them happen.  By writing down my annual hopes and dreams, I will be setting my intention with the Universe.

And so I’ve begun to toy with what my 2014 Bucket List will look like.  For example, I have a deep desire to dance once again.  It would be unrealistic for me to set a goal of dancing the Suite of the Sugar Plum Fairy en pointe, like I did when I was 18, healthy and fit!  But, I am graced with living in a community that encourages creativity in people of all ages and abilities.  Dance studios and open-classes have exploded over the last few years, now including an abundance of opportunities for the community to engage in a wide variety of dance styles, at all levels.  I’ve begun by getting out and experiencing these offerings as a patron.  And I have been proud to support and celebrate these burgeoning endeavors.

But now it’s time for me to get off my audience seat and onto the stage.  But, what does this mean for me?  I am not blind to my limitations, but I am not going to let those stop me either!  As Steve Gleason so eloquently puts it in this interview…

“I now search for new avenues of joy.  With each loss, [I] have worked to find a beautiful replacement.”

And my dance replacement looks something this… finding a way to move my body in a fluid and free-form motion.  I am drawn to Caribbean styles, where the dancers of all ages, sizes, shapes and abilities are smiling from ear to ear as they engage the music fully.  There is a freedom and openness to this style that is very appealing to me. And, Volia!… I have the first item on my bucket list!

This is the beauty of creating this list annually.  Now that I have set this goal (my intention), I am already developing a plan of action in my head. First step?: researching studios and open-dance nights.  And that’s all I have to worry about for now… just taking that first step.  Taking the risk to say, “I am worth it.”

I will not allow my physical limitations to limit my ability to experience joy!  My Bucket List may look a helluva lot different than the ones floating around the web.  But, I choose to use those as inspiration… not as a point of comparison and feeling “less than.”

If anything, the most intimidating “list” I’ve seen is Steve’s.  Once his diagnosis was delivered, he made the conscious choice to always have something to look forward to.  His most recent goal and accomplishment?.. climbing to the top of Machu Picchu!!  How on earth does someone without the use of their physical body climb Machu Picchu, you ask?  He does not do it alone!!!  And, to me, that is one of the best legacies he can pass on to others.  Not only that he “chooses to focus on the beauty of now,” but that he relies on the love and support of others to achieve his goals.

My Bucket List is not going to be a singular endeavor.  The goals and dreams will come from my inner soul, but the steps to achieving them will be paved by the love of my friends and family.

I would like to offer the same gift back to you: to be your support and cheerleader in any way needed as you create and then implement your 2014 Bucket List!  In the coming weeks, I will slowly unveil my own list as it evolves.  And I hope you will take the journey with me as I check off the items in the coming year.

Please share your bucket wishes, too.  For inspiration comes from without.  And without all of you, I would be lost.

I encourage you to take just 5 minutes of your time to watch the GMA interview with Steve Gleason.  I dare you not cry. I dare you not to smile. I dare you not to come away inspired!

http://gma.yahoo.com/blogs/abc-blogs/steve-gleason-embraces-challenges-lou-gehrigs-disease-battle-121402622.html

It All Began With a Beacon of Hope

“I feel this little light inside me.”

“That is your Soul Beacon, my child.”

“A beacon?”

“Exactly.  You carry yours with great brightness.  It is how I found you.”

She sits with this thought for a while, twirling a blade of grass. Looking up shyly, she ventures, “I think I understand.  I can feel this glow inside of me, in the deepest pit of my spirit.  And when I think of this light, I can picture a lantern guiding my way through happy times and sad.  Is this like the light you call my Soul Beacon?”

“Why, yes.  Can you imagine why I think of it as something grand such as a beacon instead of a lantern?”

“Well… a lantern usually just lights one person’s path while a beacon can be a light to many.”  She pauses to gather her thoughts.  “And my Soul Beacon, as you say, sometimes feels grand enough to light the entire world, but then other times, it feels weakened.  As if it may even go out.  But, when I use this tiniest bit of energy to reach out to another being, I feel it start to grow again, bringing with it an unknown warmth of serenity.”

“YES.  So wise, yet so young.  Your body belies your true spiritual age.  I shouldn’t be surprised; the spirit is with each of us to see and feel when we are ready.”

His gnarled hand cups the young girl’s with tenderness. “That warmth and glow you feel is your true Life Source.”

“I feel it.  I truly do.”

“I can tell, dear one.  Your Soul Beacon may flicker, but it will never go out.  Many become fearful when they sense the depletion of their Beacon.  Without stopping to reflect on what’s happening, they begin to hoard what little light they have left.  Greed and fear rule their every move.”

“But, that’s no way to live!  How very lonely.”

“Don’t fret; that’s the glory of our Soul Beacons.  You can use your special gift to spread the light to others in need.”

“Gift?”

“Yes.  For without realizing it, you are touching every being you meet.  You are spreading your gift from heart to heart.”

“How do I know if it’s working?”

“The proof is in the result.  Think of someone you’ve met who seemed down and defeated; their energy depleted; their hope lost.”

Looking off at the arriving sunset, she sees the face of the farmer in the blazing riot of reds in the Western sky.  “Yes, I remember now.  I’ve met a farmer who had lost his wife; all he wished was to lie down in his fields and give his life back to the Earth.”

“And do you remember what happened during your visit with this farmer?”

The girl retells the story of her chance encounter with the lonely man.  “As we were talking, I slowly experienced a change in his entire demeanor.  His body began to unfurl from the protectively curled stance I first found him in.  He started to lean in to me instead of away.  Shadows of a smile graced his lips.  And he thanked me for spending some time with him and reminding him of all the reasons he needs to stay here and continuing living, no matter how hard.”

“And, you, how did you feel?”

“Well, I couldn’t understand why he was thanking me.  I hadn’t done much; I just talked with him for a while. I felt like thanking him.  At that moment, I felt beaten down by my journey; I was bone tired and couldn’t see any end in sight.  And then I met the farmer, and my journey had purpose again.  I left with a spring in my step.”

“Young one, when we take our light and shine it on others, they are bathed in our Energy.  Through caring gestures and pure human interaction each of us has the ability to recharge our depleting light sources; our Soul Beacons.”

“So, that’s all it takes?  Just showing some compassion to another being will re-build their energy, recharge their Soul Beacons?”

She pauses and ponders on this.  It still seems so simple.  And then, she sees.  “Ah, it seems like actions we should all be taking naturally.  But, in today’s world, everybody’s heads are down, looking at their own small space.  But, if we look forward, into the eyes of another, we not only validate their existence, we are validating our own!  And, it’s when we feel the most vulnerable and weak, that we have to reach out.  Otherwise, we all are just walking shells of what we are truly meant to be!”

“Now, it’s your job to spread this message from one person to the next as you continue on your journey of life.  The brighter your Soul Beacon becomes, the more people will be attracted to you.  Use this not to gain power over others, but to spread your energy out like a spider web, each tendril touching and igniting a Soul Beacon lying dormant within another.”

“Shine on, young one, shine on.”

Best Laid Plans . . .

If there’s one thing chronic disease has taught me, it’s flexibility!

Here we are all geared up for our Yurt Excursion and I come down with an awful stomach virus that completely disabled me.  There was no “grin and bear it;” I was so dehydrated and feverish I couldn’t even think straight, let alone travel.  So, once again, we have to attempt to re-schedule vacation plans.  A call is made to the “Yurt Man” and he informs us he has a strict “no cancellation policy.”  Mind you, the money has already been taken from our account.  And, for us, the cost of this mini-vacation is not expendable income! We worked and scrimped and saved to afford this get away.

Here marches in the messengers of “Doubt” and “Guilt,” followed closely by “Shame.”  My husband, in his frustration, begins to get upset… “Why do we always have to cancel our vacation plans?  Why do I even work, if we’re just going to have to throw away the money?!  We should just stop planning anything, and then I will have nothing to be disappointed about!”  Of course, I internalize these mutterings, and hear them as… “Your disease takes away all the enjoyment in life.  If it wasn’t for you always being sick, we could go away.  You and life with you are a disappointment.”  And here is the conundrum of the chronically ill and their caregivers.  He needed to be heard.   And I needed to be reassured.  And neither of us was wrong.  I felt deep shame over (almost) always being the source of our need to change plans at the last moment.  This time, it wasn’t even the illness we know, it was some random super bug either one of us could have come down with… it just happened to me.  And he felt disappointment, and in that moment, couldn’t see a way through the situation.  We both felt stuck.

Luckily we have a relationship built on trust and communication, tools honed through many years together.  I retreated into myself for a while and he did the same.   But I poked myself out of my protective shell and “risked” telling him how I was feeling.  He was able to pause and reflect on what was really making him upset.  I gave him the option of planning solo trips; I truly felt (and feel) that a compromise may look like us diverging on our separate paths at times.  But, he was not keen on this idea.  And let me know his disappointed lied in not being to taking a trip with me, not in the trip itself.  Phew!  Big sigh of relief, one I didn’t even know I was holding my breath on!

Once we both felt “heard,” we were able to reassess the situation and come up with alternative options.  The bags were already packed so why not wait out the virus another 12 hours and see if things look differently in the morning?  And, blessedly, they did!  I was still only about 65% but it was a doable percentage of health!  I am used to traveling “under par.”  We called the “Yurt Man” and had another prayer answered.  He told us we could extend our stay a night to make up for the night missed.  In the end, we ended up getting even more time there (extra hours on our arrival and departure days).

Because we’ve learned flexibility in dealing with my myriad of conditions, we were able to view all sides of the problem and come up with multiple solutions.  This is a gift of having chronic illness!  Most people aren’t challenged on a daily basis to constantly reassess their mood, physical ability, needed accommodations, time, energy and scheduled plans.  At times, this may feel like a burden.  But when posed with an unexpected challenge, you have the resources to think outside of the box!  That’s the gift.

Because we were flexible, I’ve just returned from four glorious days in nature.  Yurting was our first “adjustment,” providing us an outdoor camping experience with the luxury of a raised futon bed and even indoor plumbing!  And what a prize we received for searching for an unique vacation that would suit our needs… views of 80 acres all to ourselves; an abundance of wildlife (from Baltimore Oriels to Barred Owls to even an exotic blue hummingbird that buzzed right up each of our noses, to night coyotes and morning fawns… the list goes on and on!); an opportunity to take off the watch and forget about T.V.; moments to re-connect through Scabble and Yahtzee challenges and the nightly ritual of reading each other to sleep; and a chance for my first foray into Plein Air painting, interpreting the hills and mists and wildflowers from across my field of vision onto my canvas.

The blessing of replenishing the all of me ~ mind, body and spirit.

But the best gift of all?  The self-knowledge that just because I have chronic disease doesn’t mean I have to stop living.  It’s just one more example of how I am living differently.  Recently, my mom said to me that she feared planning a trip together, not knowing “what my body could handle.”  My gut response was, “I don’t know what my body can handle on any given day, in any given hour.  But I also don’t want to let the fear of that keep me from planning anything in my life!  People travel with all sorts of abilities and special needs.  I can’t wait to live my life until I feel better.  This is my life and I want to live it now!”

After this excursion, I truly believe those brave words I so brazenly declared!

LIVE YOU LIFE NOW!  WHAT YOU HAVE AND WHO YOU ARE, ARE WHAT YOU’VE GOT.  USE IT TO YOUR ADVANTAGE… NOT YOUR DISADVANTAGE! 

Go out and adventure and then let me know what you discover about yourself and what you can do!!