Tag Archive | Chronic Disease

Stuck in What I “Used” to Look Like

i-am

Sometimes I get so stuck in what I used to look like, what I used to be like, that I cannot find any appreciation for who I am today…

Recently, it was very difficult to hear a loved one saying, while looking through old pictures, “That’s what Tamara looked like before she got really sick. Wasn’t she beautiful?” Not that I don’t say these very words myself, a disclaimer so to speak, letting others know I haven’t always been heavy, puffy-faced, pale, fill in your own negative adjective here:_________.
But this time, I wasn’t the one to point out my “different self,” it was my husband. And I know, in my mind, that he was saying this with pride, letting someone who has only known me post-sickness in on what I looked like in a healthier state. In fact, he most likely was just mimicking my own words. But, all my heart heard was, “she used to be beautiful.” Translation: I am no longer beautiful.
And as I am writing this, I realize I perpetuate these stories. Because I don’t want to appear less than (or more than, in regards to my weight- LOL!), so I make excuses. I act as if I already lived my glamorous life. Or even more so, that given just a little more time, I’ll get back to my “old self.” “Just you wait and see!
But that’s not humanly possible. For any of us. Each day we wake up, we are a newer version of ourselves. We move forward, not backwards, in time (or so we hope!).
This attitude doesn’t just pertain to the ill. Comments like these are recycled in the media and in our communities as we disparagingly remark on the aging… a “condition” that occurs in each and every one of us, no matter how hard some try to stop time. We talk wistfully about our youth… our past selves. Or we make side-comments like, “Wow, she has really gotten old.” Or even worse, “What’s up with that grey hair; why doesn’t she color it or something?!” Like aging is something we should fix instead of celebrate.
And let’s face it; the majority of us don’t recognize beauty in ourselves in the moment. It’s only years later as we longingly talk about our youthfulness/healthiness, that we shower ourselves and others with high praise.
Looking at it in this light, who’s to say we’re not missing out on the beauty of our present selves, by keeping our eyes firmly fixed on the past?!
In a stunning sermon by Rev. Tina Simson on the topic of “Fat Ankles and Personal Dragons,” she states, “We do this often… make fun of our own bodies; we talk about them as if they are a distant relative we wished lived somewhere out of town.” She goes on to reflect, “Hidden just out of sight is my flawed self-image that is fed by our culture and its unattainable singular standard of beauty. But also, I know it is fed by me as I critique and doubt my own self, my strength and value… only because by body doesn’t conform.”
So, I realize that this shift in attitude towards those of us who have been “transformed” by illness (and all of us who haven’t discovered the fountain of youth yet) needs to start with me. I need to refuse to keep on feeding that dragon!
First, a note to the friends, family and caregivers of someone who is chronically ill:
It’s okay to reminisce, but try to avoid the words “used to be.” They only denote that we are no longer a whole person as we are… today. Try instead to recognize all the positive traits that you see in us, in the present. For ex, “______ amazes me with her/his strength and resilience.”
For intimate partners: look for all the things you still find beautiful about your mate. Tell your partner, tell others, and most importantly, tell yourself. We all miss things that once were, but by dwelling in the past, you’ll also be missing out on what’s right in front of you. Perhaps we don’t look the same as we did when you first met us, but what are the things that make you pause and feel lucky that we’re still together? Practice falling in love with me all over again.
• This may sound contradictory, but it is okay to also celebrate my beauty and strength of the past. Just, please don’t get stuck in the past. Perhaps marry a reflection on how beautiful I look in this picture from 8 years ago (or the career I used to have), with a complimentary comment about me today.
And for my part:
I will try to stop putting myself down; stop being a bad example of all the ways I don’t want you to act.
I will focus on all the ways I am a success today. I may no longer be participating in a daily, more traditional job. But I don’t sit on my laurels, either. I’ve reinvented myself and found ways to engage in my life, in new and different ways. I am an artist, a writer, an editor, and supportive wife, friend, sister and daughter. I am a survivor.
I will focus on one thing I love about myself, today. It can be an external or internal attribute. I will fall in love with myself again (or perhaps for the first time). Today I looked in the mirror and realized I love my hair… not only do I like my current haircut (hurrah!) and the thickness of my mane, I love what it represents. Just 4 years ago, I had lost 75% of my hair; it was see-through thin, stringy and kinky. But as my body healed from the trauma inflicted upon it, so did my hair. It is a shining symbol of my resilient nature. Give yourself the gift of celebrating the beautiful person you are.
I will engage in activities that lift me up instead of drag me down. Instead of sabotaging my self-image by trying on clothes I know won’t fit me, I will take a yoga class that reminds me of the beauty and strong attributes my body possesses.
These exercises are not only for the benefit of our own self-worth, it is an important shift in societal attitude we are all responsible for. Studies now show that girls’ self-esteem peaks at age 9 (!) and goes down from there and that 80% of children (boys and girls) at 10 years old are afraid of being fat. Let that sink in for a moment.
Together, we can start to re-shape the current mentality of our society. Let’s celebrate the diverse tapestry that makes up our world… all the different colors, sizes, shapes, abilities, ages, and gender orientations. Do we really want a “Stepford Society” after all?

More thoughts on body image:

Mirror Mirror On The Wall

 

 

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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!

 

bucket list

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?

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!

Shine On, Soul Beacon, Shine On!

lighthouse

I have mentioned in many of my posts the idea that each of us has our own Soul Beacon. This is a concept that came to me organically during a moment of extreme illness.  It was a vision and even more so, a “knowing,” that I felt soon after my first near death experience. I was in a “stripped down state,” mentally, physically and most certainly spiritually.  I felt raw and exposed.  But, in this vulnerable state of being, I opened myself up to being completely vulnerable.  I felt as connected and observant as a child when discovering something new in their environment.  I became aware of the flow of energy between people.

I started to notice that energy exchanges could be both positive and negative; they could either lift one up or drain them entirely.  This was not just a feeling; I actually visually experienced this phenomenon. That insight gave me an intuitive knowledge of human interactions that I hold to this day.  When people exchanged laughter or encouraging words, streams of soothing, white strands of light would connect the interacting parties.  I saw this as a “recharging of the soul.”  It was pure energy, being given and being received.

Conversely, when an exchange was less then pleasant or supportive, there wasn’t a free-flowing exchange of energy. The flow would become heavily one-sided, with one party literally “sucking the life” out of another. This would show itself in forms of jealousy, fear, anger, insecurity, and dominance.

I had a clear vision of a beacon of light.  I saw that each of us is born with a cache of energy.  But just like any form of energy, if it is not recharged (refueled), it will deplete.  And when our energy sources are low, we experience depression, illness, sadness, despair, fatigue, hopelessness, and diminishing spirituality.  Most people respond to this feeling by hoarding the small amount of energy they have left.   We don’t share this energy out of fear of running on empty.  But in that hospital room, I discovered the key to unlocking a never-ending supply of energy.  The key is…

You have to give your energy away in order to receive more for yourself.

Give it away?! Yep.   This is where the concept of a Soul Beacon comes in.  Imagine a lighthouse.  The night is foggy and therefore the beacon’s light source barely reaches beyond its own standing.   Now translate that to the situation I spoke of above.  You’re feeling “foggy” and out of sorts, so you only shine your light source on yourself.  You keep your depleting energy close at hand and do not include anyone else in your circle of light.  Eventually, that circle of light will get smaller and smaller until its hardly providing any energy source for you to face the world.  This is the moment when many want to curl up in a ball and tell the world to go away.

This is when you need to stretch your final energy source far and wide; to imagine that Soul Beacon, seated in the center of your body, stretching its fingers of light to illuminate others paths.  Because this is what happens when you do: that light shines on someone else in need; the receiver is then recharged from this positive exchange and shines their light back onto you.  You will feel your inner beacon growing in strength.  With each positive interaction, the foggy veil of sadness and fear will lift.  You will start to have energy to take that next step, and then another.  And the best part is, while you’re recharging your own energy source, you are also giving that gift to someone else!

Who are you going to illuminate today?

How can you reach out in order to replenish your own light source?

What choices can you make today from a place of compassion and faith whether than from fear and insecurity?

How can you shine your Soul Beacon from heart to heart?

Read the story I wrote of a young girl and an old sage in: It All Began With A Beacon of Hope (click link)

Please share your stories and experiences!