Tag Archive | Friends

Lighting the Unknown Path

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As I have said before, it is the “unknown” that is always more difficult than the knowing. The waiting. The wondering. The wandering… of the mind as it tries to grasp on to something concrete.

My last several months have been spent in this suspended state. First we found out that our home of 15 years was suddenly being sold and we had to, in weeks time, find a (hard sought after one story) home, apply for a mortgage (which had become a Big Scary Monster in our heads), sort and pack through years of our life and family “heirlooms,” find the means to buy (and fix up) said house, move and settle, the list goes on.

The only way I survived this process was JUST doing the next right thing.  Nothing more. My husband’s anxiety would reach new and alarming heights and I would have to remind us both, “okay, let’s take a breath. Now, forget ‘The List; ‘ what’s Just ONE Thing we can do in this moment?”

And you know what? One (baby!) step at a time, we walked our way right through the scary terrain of the unknown and into our brand new home.

These are the lessons and skills I so desperately need to remember to apply to my life now.

Because just when I thought I was leaving the path zig zagging through The Woods of Uncertainty, I fell into a Bog of Burdensome Worries! (Didn’t mean to go all Tolkien on you!).

I’ve known since fall that my body was heading into unknown territory again. It’s both a blessing and a curse that I am so in tune with my physical being after years of severe illness and trauma, that I can tell as soon as I start to go off-kilter.

This time, I knew somehing major was brewing.

So, instead of going to the doctors with these worries  (although I didn’t sugar coat my concerns at my appointments either), I turned to internal pep talks, such as: ” Hey, dear body of mine, I know you are giving me warning signs that you’re failing in new and different ways, but could you just please hold on until March? And then I promise I will attend to all of your needs with the upmost of care!”

That wasn’t too much to ask, was it? Guess it was!

Because my “gift” for Christmas Eve was to wake up without the use of both my legs. Totally and completely, from the hips down (yep, includes the bladder, too!). What fun!! For two days, I could  not walk and afterwards, I had complete numbness, like my legs had fallen asleep and could not be stomped, shakened or rubbed “awake.”

Yet, did I go to the hospital? Nah! I had a host of “good” excuses… “It’s the holiday; it’s a weekend” and the creme de la creme: ” I just don’t have time for this right now!”

So my body went from flashing yellow to a blaring red : STOP!!!!!

A little over a month ago, I was reading when half the page disappeared. No joke. I could only see half of every word. A very strange and scary experience. So I shook Dave awake with a, “Honey, I need to go to the ED.” Complete resignation. No questions anymore.

The details since don’t matter as much as the lessons I’ve learned. But in brief, I am in an even deeper state of limbo… not quite knowing the true cause of my weakness and Optic Neuritis (the partial blindness ) yet (MS? CIDP?) and therefore not able to receive the right treatment aside from high dose IV steroids to abate my symptoms.

So nothing left to do but Surrender. Wave the white flag of blind faith (literally this time!).

And to reach out for help. I already feel physically vulnerable, so why is it still so hard to completely crack open and be emotionally vulnerable, too?

If anything, this move was a great practice lesson. My husband is the first to open his door to others when they need a helping hand, but he latches every bolt when it comes to receiving help for his own needs. This time I didn’t let his fear of “not seeming like enough” dictate our choices and I threw open every door and window wide with a sign hung proudly, “HELP NEEDED WITHIN.”

And my friends and family showed up. They packed, they listened, they moved, they cleaned and scrubbed my new abode. All with a smile and an encouraging hug. No expectation of return payment.

This move would not have been possible without this team!

So why should my health be any different?! I need to throw out the old skipping records that get stuck on the refrains filled with shame. Shame over my diseases, over my needs and inability to “do it all” for myself; shame over what I used to be like vs what I am like now; shame over always needing more.

But, most of all: FEAR. Fear that I won’t be able to give back. But we all have our own gifts to offer to the world. And for a long while, mine were coming in the form of my words; of being completely vulnerable through my stories. Through sharing with others and having them, in turn, share with me.

But as soon as life became overly tangled, I stopped writing. Which essentially dammed up my River of Grace… the universal energy that flows into, through and out of me… on to you… connecting all of us on this divine journey of life. So that WE ARE NOT ALONE.

So I think of Buddha’s quote, “if you light a lamp for someone else, it will brighten your own path.” And it helps me remember that whenever someone “allows” me to help them, it always feels like I am the one receiving the gift!

So while my path is now being illuminated by the inner light and energy from other’s  (as I write a dear friend is coordinating meal help for us; fulfilled by those who know me and others who are doing so purely as a random act of kindness); I am holding out my own candle in hopes of lighting just one other’s dark path of the unknown.

There is so much going on beneath the surface of each of our lives.  Let’s look just a little deeper inside.

I know I’m grateful someone stopped and did so for me. All while holding a candle to help light my way, as I take just one next step forward along the path. For as long as I’m moving forward, I’m heading in the right direction.

Namaste.

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“Give Up All Hope”? Nah.

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“Give up all Hope.” This was the provocative opening to a recent post by my dear friend and burgeoning life coach, Molly Larkin. I was instantly hooked. I found her words insightful and inspiring. But also frightening. I began to question my own dogma. At first, this unnecessarily “worried” me. Have I been wrong? Have I been influenencing others negatively with my words? In large part because I agreed with Molly’s thoughts and at first they seemed to be in contradiction with my own.

But the beautiful thing about debate (even an internal debate!) is it gets the self to think deeper—to think broader.

And I realized: 1. There is definitely more than one way to skin a chicken and 2. Words mean different things to many different people. That’s why even Merriam Webster lists multiple alternate (and sometimes opposing) definitions for an individual word.

So let me back up a bit to the beginning…

Molly’s post that got my mind a’spinning explained that she has had such “hope” for so long that if she only parented differently, her son would be/behave differently. And recently it was brought to her attention that this may just be the way her son is. “What if it’s always this hard?” her friend asked (what a great question!). She realized she was bringing herself unnecessary suffering by always “hoping” that things will change some day.

“And the hardest part, I came to see, was the belief that things should be or were about to be different. And that it was up to ME to figure out some way to fix them.”

Hence the “Give Up All Hope” post-it.

Expounding on this idea, she brought it full-circle to the roots of human suffering… we spend so many moments waiting for the next moment (the “better” moment) to happen that we completely miss out on the life we are given.

And this is where I got turned on my head. Hope has been the cornerstone of my faith (before I even had faith) over the last decade plus as I have faced medical challenge after physical challenge after personal challenge.

BUT  at the same time, and this was my conundrum, I agree 100% with her assessment of suffering.

So, how can both be true?

It all comes down to reaction instead of action.

For me, I realized, it is not the idea of hope that causes me suffering, it is the attachment to a specific outcome of hope that causes suffering. When I start defining what hope should look like or feel like in my future life, that’s when I get into trouble.

Hope for me is truly: Hang On Peace Exists… internal peace.

It’s remembering that “this too shall pass.” It’s actually the process of not forming an attachment to the present situation.

Hope for me is a personal journey. It is knowing that I am powerless over external forces in my life. That includes friends, family, my husband, my illness and the doctors, the freezing cold weather (!) and many, many other things. But I can also have hope that each day I’ll wake with a little more acceptance about what is. A little more grace and gratitude for what I do have.

Instead of trying to change myself to “better fit” into my environment, I hope only to see a little more clearly each day that everything is exactly as it is supposed to be. And that includes myself.

And that when I hope or pray that “this too shall pass,” I am not hoping that the situation will pass or change but that my attachment to it will. When I start to let go of my attachment to outcomes, it frees up an enormous amount of “heart space” to live and just be, in that moment.

I know this to be true. Because I have experienced it. And because I have experienced it before, I can hope that this feeling of true peace with what is will come again.

This is how I came to terms with the dichotomy of feelings I initially had towards Molly’s post.

I won’t give up hope. Because that to me is giving up any chance that each day can be a little bit better. And by that, I mean, I can be at a little bit more peace. Hold On Peace Exists.

To me, just by writing her brave post, Molly showed hope. Hope for acceptance of who she is as a mother and who her son is as a unique person.

Just imagine if we all hope for a little more of that peaceful acceptance in our lives… we would each begin to walk around looking others in the eyes and being able to fully look our own selves in the eyes, with the truest sentiment of “Namaste:”

“I honor the spirit within you as I honor the spirit within myself.”

So, now read the definition of Hope:

1. “To want something to be true and think it could be happen or be true.” And
2. “to expect with confidence”: TRUST

and look at it in a different light. If the thing you want and think could be true is no longer a specific outcome that will change the current situation of your life but rather that you now “trust” that the thing that is true is yourself, doesn’t it change everything? Have hope and trust that the truest thing is who you are, where you are, and what you are already doing. Now the hope lies in the peaceful acceptance of these facts.

For the other part of “Namaste” is the acknowledgment that god/goddess/spirit resides in all of us. It is the humble removal of ego. It is the awareness that we are all one.

And at that center of that oneness is a perfect creation.
I hope that today you can look yourself in the mirror and wish yourself “Namaste.”

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These Are My Graces…

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Yesterday, was my father’s birthday. He passed 4 years ago and so with the day brings a deep sense of melancholy, and yet… all I feel is JOY at the myriad of ways his spirit shines through me every moment of every day.

Today, I am in more physical pain then I have been in years. Meds have been changed, symptoms flared, and yet… all I feel is GRATITUDE that I am able to be with my closest family today; the ones who do not expect me to be anything other than me.

A couple days ago a dearest friend called in deep distress over the sudden loss of her closest mate, her dog. And my mind reeled with the age old question, “Do we close ourselves off to love to protect against the pain of loss?” And yet… all I feel is BLESSED at the way every being in my life has shaped me; has made me a better person. I have lost a lot… and yet I have also lived a life full of love.

Today, I turn on the news and once again bear witness to the tragedies of war and famine, death and disease, throughout the world, and yet… all I see is STRENGTH in the faces of my brethren, and the little acts of KINDNESS that are woven through the stories of strife.

THESE ARE MY GRACES…

The way I live my life… the way I view the world.

Threaded through my heart, coloring all that I see.

Influencing the way I treat others, and in turn, the deep compassion in which I am treated.

It is seeing a world full of ABUNDANCE instead of loss.

Grace, no longer reserved for just the Christian community… it is there, right there. Every Where. For every one of us.

Ripe for the picking.

Grace is not a thing you can earn, or deserve, or create, or even lose.

You do not have to be “redeemed” by grace; we are all gifts of grace.

It is always there. It is in the sparkle of newly fallen snow, blanketing the world in a clean, new slate.

It is in a child’s smile as they crack open from ear to ear at the mere sight of you.

It is in the gentle pressure of two hands as they encircle you in love, in support, in comfort.

It is the feeling in your heart when you give of yourself, passing the grace, to another.

It surprises us. When we are at the end of our ropes, Grace appears with an extension piece to help us get our feet placed firmly on the ground again.

It astounds us. A reminder that “no matter how tragic or bleak things get, the bad simply can’t shut out all the good, the dark can’t squeeze out all the light.”

It is our safety net: woven from the hands of loved ones, the history of passed ones, the memories of times survived, the hope that there will always be a brighter day ahead, and the knowledge that this too shall pass, and that in this moment, grace shimmers below the surface of everything.

And although GRACE is an unexpected, yet utterly amazing, gift waiting to be opened anew each day, you can still be an active participant in grace….

Pull grace into your life. Tonight at dinner, invite everyone to share their best “Grace Story.” This a great way to express gratitude for the ways grace has graced your life; and to role-model this attitude for others, especially children.

Be a witness to Grace’s magic. We’ve all heard of Bird Watchers, now it’s time to become a “Grace Watcher!” Keep a grace journal, where you document the ways grace has worked or appeared in your life each day. Review it at the end of the week and be uplifted.

Be a Giver of Grace. Look around today. Who in your life needs to be reminded that grace is still working in their lives; who needs to be uplifted by a moment of grace? Is there a way you can pass the grace this Thanksgiving, without that person ever knowing where it came from? Challenge yourself to this. It will be surprisingly rewarding: doing a random act of grace just because.

Turn yourself over to grace. Choose a day during the upcoming holiday season where you put your calculated “To-Do List” down for a day. Let grace guide your day instead. Trust that what needs to get done, will.

And most importantly, be open to grace. Center yourself each day with a short mantra. Mine is, “May my mind, eyes and heart be open today to seeing and receiving the gifts of grace that cross my path.” The challenge comes in accepting the gift of grace in whatever form it comes. No “return to sender.” Remember if at first I doesn’t seem like the right fit, try again. Grace often appears in unexpected ways and at unexpected times, and yet it is always just what you need in the moment to get by.

“The winds of grace are always blowing,

but you have to raise the sail.”

{Ramakrishna}

Dear Life…

hug you well

Dear Life,

You have been unpredictable and you always keep me on my toes.

At times, I even dream of trading you in for a newer, shinier model.

I can develop “life envy” when comparing mine to others around me.

Sometimes I want to scream, “What the heck is the meaning of all this?
“What is the purpose of living a Life such as the one I’ve been given?!”

But, in the end, I always come back to the same answer…

THIS is My Life and I wouldn’t trade it.

I wouldn’t want it taken away from me.

I wouldn’t want to be robbed of the chance to live it.

And, then, Life, you’ll throw me another curve ball.
Like the one that was lobbed at me yesterday…

Time for another emergency surgery,” Life reminds me with the insistent alarm that keeps going off in my side. This time, the snooze button does nothing to delay this scheduled appointment with My Life.

And I am reminded, “Tam, just because this is the hand Life has dealt you, doesn’t mean you have to play it alone!

So I reach out to others.

Some surround me instantly with Love and Support.

Some even put their own Lives’ on hold for a bit, to help me navigate mine.

But I also discover that many, the ones I most need and crave right now, are so used to Tam’s Life, that this is just another regular ol’ occurrence for her.

No need to worry. Don’t be alarmed. We’ll just go on with our Lives and pretend that everything is just fine.

And they’re right, I am used to a different quality of Life than most.I have had to catch these fast balls many previous times.
And in the end, I’ve always come back swinging, “Watcha got next for me Life? Huh? Huh?!

But, what if this is The End, Life?

What if I’ve already played out my 9 Lives?

Just because I’ve gone through this before, doesn’t mean I, too, don’t battle the arch-nemeses of Life; Fear, Anger, Hurt, Insecurity, and Loneliness.

If anyone else in my circle of family and friends was facing a similar uncertain future, we would all drop everything to be by their sides, to Fight for their Lives.

Yesterday, when I was signing my release for surgery, the surgeon was going over the four long lines of possible (and many, probable) risk factors involved with this procedure. The last two were: “Heart Attack” and “Death.” And you know what he said, Life? “Well, you’ve already had both of those, so you know the risks involved with these complications.” Chuckle. Chuckle.

BOTH of those? Meaning “death,” too.
And, you know what, he’s right.
Because I have not only met my Life, I have also met my Death. Twice.

So, is this supposed to make me feel less scared?
Because it doesn’t.

Yet, when I inform my closest loved ones of this impending, very serious and complicated surgery, happening in just 2 days’ time, they respond, “Okay.”

Okay? Isn’t that what you say when you let someone know you have to reschedule lunch because you’re having a tooth filled?

But, that just highlights how insanely crazy You are, Life. So insane, that insanity begins to appear as normalcy.

And, yet, I still wouldn’t trade you in.

I want to keep living you, Life.

I still have uncharted parts of myself and the world that I want to explore.

I still have so much love, light and energy to give to others.

And I still have a great big capacity to receive that love back.

As I write you this letter, I sit outside in the waxing and waning sun. Watching as it plays hide-n-seek with the clouds. I listen to the one of a kind bird song symphony, never to be repeated at any other time nor in any other place. A unique crescendo of my backyard birds, a concert for one.

I listen to the traffic coming and going on the expressway behind my house. And I dream of where they are headed. I dream of where I next want to go.

I can feel the soothing, loving presence of my husband as he gets ready inside. The one person who has born witness to the all of you, My Life. And never takes for granted the extreme pressure I am under…

I am constantly pushing you up hill. But, I am up for the battle.

I do not planning on meeting your shadow self, Death, again for a long time to come.

But, I also know it is not solely up to me.

So I’ll make a deal with you, Life…
Don’t give up on me and I won’t give up on you.

Love,
Tamara
aka: HopeSpirit

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!

Open Letter to “Normals:” Please Read

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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

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

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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