Tag Archive | chronic fatigue

Toeing The Elusive Line of Life

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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!

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Poked and Prodded, Jibbed and Jabbed

I realize that during the last three weeks I have been poked, prodded, squished, jabbed, plugged in, dilated, tested and re-tested.  No wonder I feel exhausted!  Since the beginning of 2014, I: have had my annual boob squish (yippee!); underwent cardiac testing; was “shot up” with my second infusion treatment (TNF Inhibitor); had an “invasive” G/I exam and tests; had the pleasure of my eyes being dilated while being chastised for not coming in annually (“you know, you do have a lot of underlying medical conditions that effect eye health”… duh!); got my monthly blood-work completed; was stung with almost 30 Botox injections in my head and neck; and then to top it all off … was submitted to two corticoid-steroid injections in my S-I joint (the hardest to reach=tailbone area) and my hip as well as three trigger point injections in my shoulder area (no numbing meds. with that one=double ouch!!). All in 21 days!

Yet, strangely, this feels normal to me. How weird is that?!

Just last week, a friend was telling me how exhausted she was.  She had just finished a day filled with two medical appointments, a flu shot and DPT shot, as well as some blood work.  And I understood!  Yet it also gave me a deeper perspective on what most able-bodied people find taxing.

And it gave me a great sounding board for helping her to better understand what my daily life is like.  Of course, I didn’t share this with her on the spot.  She had a right to her own exhaustion and some empathy from a caring friend.  Bottom line, isn’t that what we all crave?  But later in the week, I brought up her experience as a starting point…

I asked her to recall how depleted (and violated) she had felt on this day of appointments and tests.  I told her that I, more than most, could 100% relate to her experience.  Then I followed up with, “you know how you felt? Well, just to give you a little perspective, that’s what it is like for me 2-3 times a week, on an average week.”  I saw recognition light up behind her eyes.  And I realized that it is difficult for others to understand how the chronically ill feel on a chronic basis.  We all need a compass point to help guide perspective.

Another dear friend has often said to me, “I imagine how horrific it feels to have the flu.  And then I think of you, and try to imagine what it would feel like to experience that all-over pain and fatigue every. single. day.”  She sometimes follows-up with, “It makes me feel like crying.” Ah, me too.

So I realize these are all good starting points to increase the awareness of our “well-bodied” friends and family.  Our barometer for pain is at a higher set point than most.  We have to be that way in order to survive (and hopefully even thrive, at times!).

But it is also important, if we want to maintain honest integrity with ourselves and others, for us to attempt to explain what this means.  Being chronically ill is… a constant cycle of preparing oneself for upcoming doctor’s appointments and tests.  The emotional roller-coaster is taxing both pre- and post-visit: Is this the day I will get bad news or good news?  Is this the doctor that will have a new idea to help me with my illness(es)?  How many slips for subsequent tests will I leave here clutching today?  Can I even afford to go to the doctor’s today?  How am I going to get there; am I strong enough to drive myself?  Should I have someone with me so I am not the only one hearing the doctor’s words? Is this going to be another appointment with the summation, “I’m just not sure how to help you.” shrug.; Do I even get my hopes up?

Then there is the physical toll. Just getting ready for these appointments can be exhausting; sitting for long periods in the waiting rooms can be even worse.  Waiting in uncomfortable chairs (especially the hard plastic ones in the exam room!), can wreak havoc on a chronically ill body.  Then doctors like to (and, let’s face it, should be) physically examine your body, too.  Herein comes the poking, prodding, jibbing, and jabbing, all igniting flares of various “hot spots.”  Whether it is abdominal pains, muscular and joint pains, neuropathy, etc… we don’t like to be excessively touched!!   And are bodies will let us know this with a snowball effect of all over and hyper-aware pains (allodynia) throughout our bodies for several days after the appointment.

By the time we start to recover, it’s time for the next onslaught!

And, in between all these appointments, we want to live life… and not just inside the walls of hospitals and clinics!

We don’t need your sympathy.  But the next time you are feeling all-over exhaustion from a day at the doctors, an afternoon full of tests, or a bout with a cold or infection, think of us.  And give us empathy and understanding.  That’s all we truly crave.

Thank you.

Open Letter to “Normals:” Please Read

understanding quote

I came across this letter posted on another blog.  It was originally written to help understand what people with Fibromyalgia live with.  But it is pertinent to all the patients who are and family member of the chronically, “invisibly” ill. So I tweaked it a little. And would be forever grateful if you took a moment to read it (and share it)!

Open Letter To Normals,

These are the things that I would like you to understand about me before you judge me…

Please understand that being sick doesn’t mean I’m not still a human being.  I may have to spend most of my day flat on my back in bed or on the couch in jammies, and I might not seem like great company, but I’m still me stuck inside this body.  I still worry about school and work and my family and friends, and most of the time I’d still like to hear you talk about yours too.

Please understand the difference between “happy” and “healthy.”

When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time, in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means…  I’m happy. That’s all. I may be tired. I may be in pain. I may be sicker than ever.  Please, don’t say, “Oh, you’re sounding better!”  I am not sounding better, I am sounding happy. If you want to comment on that, you’re welcome. Happy ≠Healthy.

The same goes for “looking good.”  If I have the energy to, I like to put on a little make-up and a favorite sweater, maybe even curl my hair.  But looking good does not always equate to feeling good.  That’s why they are called Invisible Illnesses.  Looks can be very deceiving!

It is okay to say, “You sound happy today.”  Or, “I know you may not feel well, but you sure look pretty today!”

Please understand that being able to stand up for five minutes, doesn’t necessarily mean that I can stand up for ten minutes, or an hour. It’s quite likely that doing those five minutes has exhausted my resources and I’ll need to recover – imagine an athlete after a race. They couldn’t repeat that feat right away either. With a lot of diseases you’re either paralyzed or you can move. With this one it gets more confusing.

Please repeat the above paragraph substituting,
“sitting up”,
“walking”,
“thinking”,
“being sociable”
and so on  …. it applies to everything.

That’s what a fatigue-based illness does to you.

Please understand that chronic illnesses are variable. It’s quite possible (for me, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the bathroom.  Please don’t attack me when I’m ill by saying, But you did it before! There is no formula to follow with my disease.  If I have the energy on one day, I will seize the opportunity and engage in the next present activity.  Just as likely (or even more so), I will get up with the intention of following-through on a plan, only to discover I am utterly exhausted after just getting dressed and will have to lie down.

If you want me to do something, ask if I can and I’ll tell you. In a similar vein, I may need to cancel an invitation at the last minute. If this happens please don’t take it personally (I’m just as sad and upset about it as you!).  I still like to be asked, even if I have to bow out.  It’s hard to have a chronic illness and to be excluded from events because you don’t want to make me “feel bad.”

Please understand that “getting out and doing things” does not make me feel better, and can often make me seriously worse.  Chronic Illnesses like Fibromyalgia, Lupus, Arthritis, M.S., Polychondritis (me!) and Abdominal Conditions, may cause secondary depression (wouldn’t you get depressed if you were stuck in bed for years on end!?) but it is not caused by depression. Telling me that I need some fresh air and exercise is not helpful and truthfully, incorrect – if I could do it, I would. And please understand that if I say I have to sit down / lie down / take these pills now, that I do have to do it right now – it can’t be put off or forgotten just because I’m doing something.

Chronic, Invisible Illnesses do not forgive.

Please recognize that I can’t spend all of my energy trying to get well. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But part of having a chronic illness is coming to the realization that you have to spend some energy on having a life now. This doesn’t mean I’m not trying to get better. It doesn’t mean I’ve given up. It’s just how life is when you’re dealing with a chronic illness.

If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. It’s because I have had almost every single one of my friends or family members (or friends of friends, for that matter!)  make a suggest at one point or another. At first, I tried them all.  But then I realized I was using up so much energy trying a myriad of treatments and “cures” that I was making myself sicker, not better. If there was something that cured, or even helped, people with Fibro, CFS and all the other “invisible illnesses,” we’d know about it.  This is not a drug-company conspiracy. There is a worldwide network (both on and off the internet) between people with chronic, invisible illnesses, and whenever there is a new, valid treatment option available, we already know about it (mind you, they are far and few between).

We’ve had to find acceptance in the frustrating fact that medicine has not caught up with the growing cases of autoimmune illnesses. The best support you can give us is to accept this fact yourself.  To accept us as we are, not as you would want us to be.

If after reading this, you still want to suggest a cure, then do it, but preferably in writing.  Please don’t expect me to  rush out and try it. If I haven’t had it suggested before, I’ll take what you said and discuss it with my doctor. Please understand that getting better from an illness like this can be painstakingly slow. (pun intended!)

People with Autoimmune Illnesses have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out. Our bodies are literally attacking themselves and there is no pattern that doctors or patients follow.  Each of our cases is unique and varied.

Don’t misunderstand me, I depend on you – people who are not sick – for many things.  But most importantly, I need you to understand me.

Thank you for your compassion,

The Invisibly Ill

My 2014 Bucket List is Filled With JOY!

 

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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.

Indecisiveness is the Killer of Inspiration

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Indecisiveness is the killer of inspiration. At times, I can be so clear with my intent that I do not question the “why?”  And at others still, I will find myself waffling and waffling to the point where I am no longer clear about anything: what I like or want to do or how I am going to do it.  I have forgotten the skills I have nurtured.

When I am debating between two paths in front of me, I concentrate on my center and listen to the intuitive voice within. Some call this the “voice of God” while others feel more comfortable defining it as the “voice of their soul.”  Either way, it does not steer me wrong.  I have consciously practiced decisiveness over the last couple years and have found great success and satisfaction in this approach.

What does “this voice” sound like, you may be wondering?  For me, and many others I have contemplated this topic with, it is always the first answer I hear.  My soul, through the grace of God and the Universe, knows the right step to take.  It’s my over rationalizing, over-thinking, fearful mind that muddles the thought.  Upon practice, you will discover that there is always a clear voice that speaks from within.  But you have to be open to hearing it, and then, even more importantly, open to receiving it.

Fast forward to today, and I find myself falling back on old, unproductive habits.  I hear that voice and quickly think right over it… to the point where the original intention is lost and I am left a confused mess.  For example, I am contemplating taking another art course.  I just completed my first “formal” art course since freshman year in college (!) and want to capitalize on the confidence and skills it gave me, by continuing to move forward.  I was strongly encouraged to continue my pursuit and that I could take a number of intermediate/advanced classes that would provide me with the tools to refine my style.

Not knowing what the best next class would be, I brought in a sample portfolio of my works to get the advice of the instructor. But if I want to be completely honest with myself, I did not want the “responsibility” of choosing the next class; for fear that it would not be an accurate fit.  Where does this fear come from? A lot of it is financial.  These classes cost upwards of $265! I would be eligible for a scholarship; but only my first class would be a fully covered, after that, it would be partial scholarships.  And, as us chronically ill know all too well, time and energy are precious commodities! I don’t want to “waste” them on the wrong course.  Argh! The pressure!!

There are many typical fear based reactions that can keep us from trusting our one, true intuitive voice.  I think we can all identify with financial insecurity throwing a monkey wrench into our confident, decisive selves.  We can fear making the “wrong” choice and either not enjoying what we chose, or, even worse, “missing out” on the other, better option.  We can be stifled by fear of failure or of trying something new and outside of our comfort zones.  Often, we are afraid of change; even if the present situation is not ideal (and even harmful to our mind, bodies or spirit), it is the comfortable.  And we like comfortable, the known.  We can be paralyzed by thoughts of what others will think of our choice, or by comparing ourselves.   We can be afraid of failure.  We can be afraid of wasting time, money, energy. . .

And then I hear my friend’s voice saying… “YOU MUST FEEL THE FEAR AND DO IT ANYWAY.”

Many of us have “trust issues,” and asking ourselves to trust our inner voice can feel like a huge gamble.  I know from experience that it does feel uncomfortable at first; because it is not the way we have typically done things in the past.  But whenever a decision is made based on faith rather than fear, you are always going in the direction intended. 

It does not mean that every choice you make from a place of faith and trust turns out like a pot of gold at the end of the rainbow!  There are times where I have listened to my intuitive voice and have faced challenges, pain, loss, and hurt because of the choice I made. But, in the end, I have always discovered there was a greater reason why I had to go through that experience.

So, I need to get quiet; because right now I am so twisted into knots over the simple choice of what class to take, that I have lost my intuitive, creative self.  And this waffling has poured over into all areas of my life, to the point where I feel stuck in a mire of indecisiveness… constantly questioning myself about what choice is the right one and then feeling fearful afterwards that I made the wrong choice.  I am in over-thinking mode.  I am a computer about to overheat and shut down.

So these are the steps I am going to take right now…

  1. Turn off all external stimuli
  2. Quiet my mind and my body through some deep, cleansing breaths
  3. Say a prayer of intention:  “Please let my mind, heart and soul be open to receiving the messages you have to give.  May I not question my one, true intent.  May I trust in the messages I receive and may I have the faith to face my fears and insecurities.  May I embrace all the opportunities that come my way.”
  4. Then I will repeat a series of cleansing breaths and clear my mind.
  5. I will pose the question to the answer I currently seek.
  6. And then I will just listen.
  7. I will let the first thought that enters my mind grow in shape and size.
  8. If other thoughts start to intrude, I will observe, describe and let them go (for example; “I am feeling fear about making the wrong choice and wasting my scholarship money.”)
  9. I will put my hand over my heart and remind myself that I am loved and cared for.intuition1

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

and-in-all-of-our-troubles-I-have-great-joy.-2-Cor.-7-AnExtraordinaryDay.net_

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 Carribean danceCaribbean 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.”

machu picchu steve gleasonIf 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

Breathing in the Now

Present moment

I was asked recently: “How do you stay so calm and in the present moment throughout all your health scares?”  This inquiry came from a dear friend who is filled with future worries over a loved one who may have cancer.  I include words like “future” and “may” on purpose.  Because upon reflection, I realize that this is the key to my acceptance, and subsequent serenity.

I must keep my mind in the present moment at all times.

This is a mindful practice. And as the word “practice” implies, it takes concentrated effort to maintain.  But with practice and time, it becomes more natural; like a form of breathing.

Breathing in the NOW.

Here are some steps I’ve taken to keep my mind, body and spirit in the here and now; neither fretting about the past nor worrying about the future…

SPIRITUALITY: The next question my friend asked was regarding to my spiritual health… “Is this what makes you so strong?” she wondered.  I’ve thought a lot on this. My immediate response was to explain that although I am deeply spiritual today, it was not always this way; especially during the throes of my most severe illness.  But, I was wrong.  Although it is true that my spirituality has only grown over the years and I can now comfortably say I believe in a Higher Power, an Energy that is greater than myself, there was always a spiritual trust deep in my soul…

TRUST: A trust that everything would (and will) work out the way it is supposed to be.  I can’t define what this is and nor should I (this is where I can get into trouble!).  But I do have an unexplained knowing.  And that “knowing” is the faith that I am going to die not on my time clock, but on the Universe’s.  And although that may sound scary, it can actually be very freeing.  Because once you let your mind release the worry of when you’re going to die, or get sick, or come upon hard times, you can focus on the HOW:

THE HOW: How am I going to live today to the fullest extent of my spirit?  What steps am I going to take to: nurture my mind, body and spirit; reach out to others instead of isolate; strengthen my relationship with my spiritual base (whether it is God, Buddha, the Universe, or the trees); show myself all the love I deserve; and reach out to others in need?..

SERVICE:  One of the best ways I have always found for getting outside of my own insular world of worry is to reach out to others.  This certainly isn’t the first time you’ve heard me sing this song!  Being of service to someone else (stranger or loved one) not only gets me out of my own head, it uplifts my soul, recharging my internal energy source, my Soul Beacon. And, let’s be completely honest here: there is always someone who has it tougher than you right now.  It’s important to keep that perspective!

IN THE NOW:  There are many techniques I use to keep my mind in the present… I will repeat the mantra “I have arrived” over and over while holding my hand on my heart.  I will use a God Jar (you can name it anything you want); this is a container where I write down my worries and place them inside.  Then when those worries resurface in my mind, I gently remind myself, “Oh, Tam!  You already sent that to the universe/God; you don’t need to worry about that anymore.  It’s taken care of.”

CONTINGENCY PLANS:  Stop making them!!!  I was master of this for so many years, and all it did was exhaust me!  I would figure out all the “possible future outcomes” and then come up with (several) contingency plans for each scenario.  But, you know what?  90% of the time my future would unfold completely different than anything I had “prepared” myself for.  So I would still have to fly by the seat of my pants, in the moment; but my mind would be so fatigued from all the ruminations, I wouldn’t have the energy to successfully face what was in the here and now.  Then, one day I just stopped!  And, you know what?  If I am doing all the above things to take care of myself on a daily basis, I can always find the tools to help me with whatever comes my way. And my life, my spirit, is much calmer because of it.

I realized all the anxiety I was feeling on a daily basis was self- created.  I decided to get off my own Merry-Go-Round of Hell (cue Twilight Zone music…).  You can, too!

STOP WAITING FOR THE OTHER SHOE TO DROP:  I thought that if I was always waiting for something bad to happen, I wouldn’t be caught off guard (disappointed, disheartened) when it did.  Yes, my life is constantly dropping shoes on my head!  But, all that waiting did was create a stress-filled environment where I was inviting trouble.  We attract what we expect!  So, I started expecting differently.  And because I stopped looking to the sky for these impending “bombs,” I am now able to recognize and celebrate all the calm days between the storms.

STOP ASKING “WHY ME?” AND START ASKING “WHAT NEXT?!:” Truly, there is no answer to the question “Why?”  I can’t tell you how many times loving friends have lamented, “Why you?  I just don’t understand why the nicest people get the hardest lives?”  I don’t know either.  But all this question does is create an environment of self-pity.  And when I am stuck in self-pity mode, I can’t see all the amazing gifts that have come out of my illness.  I’m not saying it’s all “unicorns and rainbows” here! But, I do know that in any situation, be it physical, emotional, mental, spiritual, financial, inter-relational… the only question that serves me is: “What next?”  What am I going to do with the hand that is dealt me?  How am I going to make this Situation serve me?  What skills do have to get through this?  And who do I know that can help me?

Once I move beyond victim mode, into action mode, I am living in the present moment.  AND, FOR ME, THAT’S THE ONLY PLACE I WANT TO BE!