Showing posts with label Being Present. Show all posts
Showing posts with label Being Present. Show all posts

Thursday, April 7, 2016

What Defines You? Problem or Possibility...

                                                                                                      Photo Credit, David Ralph Johnson

Not feeling the best today. It was one of those mornings when, rather than to fight against my reality, I decided to let go and just take care of myself. As I type those words, even to me, it seems like no big deal. When you’re feeling well, do things. When you’re not feeling well, don’t do things. Just rest. You’re disabled - you get to do that. But when living with “not well” every day of your life, it can be incredibly hard to make that decision. But... today I did. And after sleeping most of my day away, I woke up and decided to watch a little Netflix…and I am so glad that I did.

To my friends out there suffering with chronic illness, disability or any life changing health condition - there is a new, absolutely fantastic documentary out there called My Beautiful Broken Brain. It’s the self documented story of 34 year old Lotje Sodderlands’s struggles, set backs and eventual break through as she relearns to speak, read and write following a major brain hemorrhage.

Prior to having this very traumatic stroke, Lotje was, in her brother’s words, “extremely dynamic, extremely social, very impassioned” Highly intelligent, Lotje was a London based film maker who loved all things intellectual and had an intense passion for reading. After the stroke, she lost much of her ability to articulate words and all of her ability to read or write. She described it as if it was like becoming a baby again, yet, intellectually and on some deeper internal level, she was still “there”.

What captivated me first, as someone who has had a life changing medical condition and has spent a lot of time in hospitals, was her ability to describe through few words and self documented video, the fear she experienced with being separated from the “real world”. Stuck inside a body she no longer understood and having little to no control over what was happening to her. Yet, if you were to walk by her on the street, she looked completely normal.

As the film progresses you see how she begins to transform that fear into a slow letting go, and eventually into an acceptance of her own vulnerability. A journey all people with life changing health conditions go through, if one is lucky enough. And as old age will have it, eventually all are met with the challenge in some shape or form.

But I think that the most poignant part of the film is where she was addressing a conference room full of therapists at the end of the film. She was speaking to them about what has been most difficult for her in regards to working with doctors. She states,

“You [doctors] have to work with somebody who is being assessed and somebody who is being defined by their limitations because that’s the only way to figure out how to make them better. And I think just the experience of continually being defined by what you can no longer do or how you are sort of limited becomes, I think, devastating. "

It is incredibly devastating. For me, even more so when I was constantly dealing with my long term disability insurance. Not a second of my day was hidden from their scrutiny, either literally or in the form of my own conscience. A constant “proving”…a constant defining. It’s inevitable, and takes tremendous daily work to combat. One cannot go to the doctor weekly for seven years without it having some sort of defining influence.

Without giving the best parts of the movie away, she has a statement at the end that resonated deeply with where I am at these days. A place that still does not come completely natural and takes daily thought and effort, but a place I am so glad that I am at. She says, “I don’t need to return to my old life. This is the new existence, the new dynamic where I am not defined by my limitations, but rather about endless possibilities.”

There’s a lot of grieving that has to go on between day one and the present moment. She made this statement at the end of year one. I’m well into year seven and I’m not completely there yet. I still have intense moments of sadness. I still have those days when I know my goal, consciously or unconsciously, is to feel like I felt before getting sick. Every time I go on some sort of “maybe I’ll try this diet or this supplement” kick, I know what’s behind it for me. A longing to cure myself, to be that person I once was. A dissatisfaction, to the point of not accepting my reality in the present moment. When in reality, no one ever returns to the past. We all move forward from this moment. And in this moment, we ALL have endless possibilities. The healthy, the sick, the old. Until this moment no longer exists for us, the truth is… the sky’s the limit.

Reality is what we take to be true .
What we take to be true is what we believe .
What we believe is based upon our perceptions .
What we perceive depends upon what we look for .
What we look for depends upon what we think .
What we think depends upon what we perceive .
What we perceive determines what we believe .
What we believe determines what we take to be true .
What we take to be true is our reality .”

~ Gary Zukav, Dancing Wu Li Masters: An Overview of the New Physics  

Thursday, April 4, 2013

What Are YOU Holding On To?

Me, freezing in Florida this past week!
If I had to pick my favorite part of the day, it would almost always be morning. Even though I wake up with the usual myriad of aches and pains of someone with multiple autoimmune diseases, I still find this part of my day to be the best.

Of the the things I like most, like the feel of a fresh new start or the knowledge that in an hour or two I will be in the easiest part of my day physically, I would have to say that my morning coffee is the pinnacle of my a.m. routine. I love everything about it. I love the smell of a pot brewing as I lay tucked into my favorite soft blankets. I love the methodical movements as I reach for the cup, set it on the counter, lift the pot out from the maker and pour it into my carefully selected mug for the day (I have a collection of mugs made by an 80 year old potter I dearly love...the potter and the pot). I love the smell and the steam as I move the mug towards my mouth. I always let it linger there, just a moment, before I give it that first test sip of the morning. Slowly, always slowly, as to not burn my lips or the tip of my tongue, I tempt my senses, just for a moment. And then the full rich taste of coffee. Nothing tastes like the first sip. In fact, if left to "sip amok", I find that by the sixth or seventh cup the taste has progressively gotten less satisfying. Funny how one will continue to drink something that no longer tastes good merely out of habit. And then there is the warmth. The soothing warmth as it moves from mouth, to throat, to esophagus, to belly. Ummm...the warmth of coffee in my belly. Nothing like it.

The world moves slow as I sit at my counter and drink that first cup. It moves slow and easy and I cherish the stretched out tick of our old kitchen clock.

In the realm of letting go...

There are things I have had to let go of in this life. There are things I have chosen to let go of in this life. And then there is everything else in between. The stuff that lingers. I don't think I can say that one or the other is any more or less difficult, in fact, it's definitely relative. But the stuff that lingers can be particularly and chronically painful. For example, I know I shouldn't drink coffee. I've been told this by every doctor that I have. Yet, as I sit here typing these words, a cold cup-o-joe sits directly to my right on a silver dollar coaster brought back as a souvenir from a vacation out east over thirty years ago. Every day a little battle goes on in my brain. Every day the health conscientious, rational Theresa waves her little white flag of surrender as the caffeine addicted, habit mongering fly by the seat of her pants Theresa does the little Starbucks happy dance of victory. We'll, there's always tomorrow.

I heard a quote the other day by a guy I can't remember. Oh, I could go look it up, but today I am just typing freely. I'm not really working at it,  and going to my iPad and finding out the name of the guy who gave the last Dharma talk would definitely be considered "work" for me today. Getting up, walking to the living room, opening the iPad...need I say more? Anyway, the quote was this...

"We hold on to things that we think are gonna 'do it' for us."

You know, the stuff that we think makes us happy...finally. This is usually the stuff that makes us skinny, creates well adjusted kids, gives us the perfect job, makes us healthier, solves our financial woes, mends broken relationships, keeps us awake, answers all our spiritual questions, makes our parents finally understand us, numbs our senses and bestows on us a blessed cloak of eternal peace. You know the stuff. It's the stuff we obsess about in our minds. It's white noise. It's mindless....or mindFULL chatter. It's the story we tell ourselves day in and day out, without even realizing it. It just plays quietly on and on and on. These things we refuse to let go of because we think they're helping.

And maybe, like my coffee, it is...temporarily. My coffee does wake me up. It does put me in a good mood. It does make me happy - in my ever fleeting breath of a moment. But the bigger picture says differently. The bigger picture reflects a huge energy and emotional drop in about an hour, and then maybe some irregular heart beats, and then maybe some especially swollen joints, and then a headache....

Yet, we hold on. Why? What are you holding on to? And why are you holding on to it? Why am I?

For me it's about fear. It's about being uncomfortable. Feeling shaky and groundless. A little personal note here about myself. I can't sit still for very long. (yes, that might have something to do with eight cups of coffee) I'm working on it, believe me. Me and two very good therapists, along with the help of countless others who come to me by book, or CD, or ancient text, or podcast. I can't sit still for long and I feel the intense urge to fill space up. I fill it up with thought, or writing, or picking at hangnails, or eating, or cleaning, or reading, or whatever. I just fill it up. It's why meditation is still work for me. (I refuse to give up though! I believe the sages to be true...along with all the well founded scientific research!) It's painful, and not just because of my joints! I get uneasy in empty space.

So I fill myself up. I fill my space up. In a sense, I try to make myself FULL of what I think is "gonna do it for me". And this stuff can be pretty sneaky, disguising itself as spirituality or even mindfulness. In my effort to "let go" of self, I simply put on the cloak of the moment. Today I am blissfully much so that I need to rush to my computer to write and tell you about it! Get it? Anything but just sit and experience it.

This is the thing...

A lovely picture taken by my husband of the gulf shore. 
Let go. Period. If we have to say it to ourselves a thousand times a day in order to let go of just one thing, then it's worth the work. Life is meant to be lived, not thought. Filling ourselves and our space might give us a sense of temporary safety, but in the end it just makes us a big solid mess. Thinking way too much and missing life in the meantime. When we allow ourselves to be open - to stop the chatter - we become translucent. We allow ourselves to be open and curious, trusting in the moment instead of hiding within our past experiences or in what we think the future holds for us to make us happy. Give up those old and frightened parts for something new and fearless. Loosen up a bit and see that this life is a vast ocean. And guess what. We float! Learn to trust and we will all find that it's a wonderful ride. I truly, truly believe this.

So you ask, how much do we "let go"? We can't very well walk around in life letting go of everything. There are things that need to be thought about and things that need to be done, bills that need to be paid. If you're anything like me, you try to pin down the details because the vague is...well, painful. We want to know the right mix. How much can we let go before we are considered down right irresponsible? It makes me think of this cute little story I heard one time about a question that was posed to a wise old monk. His student asked him one day, "How much of the self is needed?" to which the monk replied, "Enough to get out of the way of a bus." Believe me, when the time comes, you will know what to do! Making decisions based on the reality of the moment is the best way to care for your future.

We don't need to pin it down my friend. You and I are beautifully and wonderfully made, intelligent beyond our imagination. Letting go and revealing what really resides within you will only make you better. For within you and within me lies the Kingdom of Heaven. All we ever need. No need to fill or cover or boost anything up. In fact, we only need to let go .

Can you trust that you are good enough "as is"? Because you know what? "As is" is as good as it gets. Anything more is less.

I wish I could end this with some grand proclamation in regards to my future caffeine intake. I'm working on it. I'm working on a lot of things these days. What I can promise you is this - that every day I will let go of something - if you will too. It may be the same thing over and over and over again in the same day. And that's perfectly okay. It's not so much about the arriving as it is about the journey anyway.

Oh, to be transparent
I shall feel

in my nakedness
finds its way


I find
it is worth

letting go
solid self
to join the
as she
moves freely

Holy, holy, holy
Peace to you,

Friday, October 26, 2012


"Home is where you hang your hat."

I love being home, no doubt about it. I always have. Even when I was a teenager, I would have much rather hunkered down with my family in front of a good “made for TV” movie than to be out with a group of friends. To me, home feels good. It feels safe. It feels comfortable when the world seems edgy and rough. It feels consistent when everything else rushes to change.

In this world of striving – striving to be richer, striving to be smarter, striving to be thinner, striving to be happier, striving to be healthier, striving to BE anyone other than who we are in this very moment - in all of our conditioned discontentment, we fail to see that we are exactly where and who we need to be– in this moment. Yet, how can it be anything different? But if we are in a constant state of striving, how will we ever know? How will we ever become aware of the beautiful fact that we are already there?

In mindfulness meditation you intentionally commit to being fully present in this moment, not trying to improve yourself or get anywhere else, but to simply realize you are already where you need to be. You aren't trying to attain anything - not even mindfulness itself. You just accept things as they are. In Wiktionary, the Wiki-based open content dictionary, they give this definition of the Old English proverb, “Home is where you hang your hat".
Rather than feeling nostalgic or sentimental, one should simply accept any place where one happens to reside as one's home.
If we truly come to a place of acceptance about ourselves, if we stop striving and realize that in this moment we are ALL that we need to be, then home becomes a place within ourselves. Home is wherever we are, and coming home means a returning to our true selves, a place we are destined for. As the poet Cavafy describes in his journey home to the island of Ithaca, finding “home” was not some external place to arrive at, but a place of awakening and enlightenment within.
Keep Ithaca always in your mind.
Arriving there is what you’re destined for.
But don’t hurry the journey at all.
Better if it lasts for years,
so that you’re old by the time you reach the island,
wealthy with all you've gained on the way,
not expecting Ithaca to make you rich.
Ithaca gave you the marvelous journey.
Without her you would have not set out.
I am very thankful for the physical place I call home. But I have also been in a mental state where no matter where I am at; I can’t seem to find my way there. In my days of striving to find a diagnosis, I was further from home than I have ever been. Fear is like the kindling of the past fueling the fire of the future we dread. It keeps us moving outward, farther and farther from home.

Letting go and accepting where and who we are is not some sort of passive resignation. It is your intentional invitation to the unlimited capabilities that reside within. When asked why people are afraid of this acceptance, Jon Kabat-Zinn writes,
Maybe the fear is that we are less than we think we are, when the actuality of it is that we are much, much more.
The hat in the above photo still hangs in my home. I bought it during a time of great transition in my life, long before I became sick. I've put it on and taken it off many times over the past seven or eight years, each time hanging it back up on the corner of my mirror or on a hook in the entryway. It's presence comforts me. Seeing it there tells me I’m home. 

Right where I’m supposed to be.

Wednesday, July 11, 2012

Learning To Float

The view from our bedroom door/window. 

Last week my family and I spent seven days in a cabin on an island in northern Minnesota. We found this Shangri-La two years ago and honestly thought we would never be fortunate enough to experience it again. But as luck would have it, there was a cancellation the week of the Fourth of July and the caretakers offered it to us on a whim. At nearly 11pm on a cold February night I responded to the email without question, “Yes! We will come!”

Six months passed and our allotted time finally arrived. On the heels of a week full of family visiting from out of state, we took off for the island exhausted and ready for the quiet peacefulness offered by a small piece of land completely surrounded by beautiful clear lake water. With our first visit back in 2010 vivid in my mind, I could hardly wait to sit out on the deck in the cool breeze, read the books I had brought, fish the abundant waters, fill myself on camp food and nap whenever the need arose.

The day before we were set to take off, John (of John and Kim, the owners/caretakers) called us to warn us that they had had record rainfall and that the lakes were at least three feet above their normal levels. There were no beaches and most docks were completely under water. He assured us that he had created a makeshift solution and we should have no problem getting onto the island. John, the eternal optimist.

When we arrived at the mainland dock, we were immediately amazed at the height of the water. He was right, there were no beaches and everyone’s docks were under water. What we also noticed was that due to the damming of the lakes being fed by the Mississippi, the waters were full of tannin. Tannin is humic acid that is left in the water from decaying vegetation, primarily leaves. Our clear lake water looked like root beer – dark, dark brown with a reddish tinge. On a positive note, as John put it, “it’s as warm as bathwater”. And it most definitely was!

Our first day on the island.

Our first day there was mostly spent setting up camp and running back into town for groceries. Our week would eventually include my oldest daughter and her family as well as my parents, so this food haul would be a big one – about $500 worth. Running to the store is no easy endeavor when you are on an island, so we wanted to get everything all in one trip. Being that our day started around 5am, we had traveled over half a day to get there and the temperature was creeping near 100 degrees with high humidity (no air conditioning in our vehicle or in the cabin)  – we ended our first day absolutely exhausted. I use the word “we” very loosely as I did very little of this work. Just managing to stay cool and not get sick was my number one priority. This was Saturday.

Sunday was another very hot and humid day. As the afternoon approached the skies turned a thick dark gray. With a storm on the horizon we told the girls that we could go out on the pontoon for only a short while. I think we left around 6pm. After less than an hour of fishing, Dave gave the two-minute warning. Not wanting to end our first trip short I joked with, “Ah, just five more minutes?” Nope, we’re heading back. There was to be no discussion.

You hear stories about people not having time to react when bad weather hits. I’ve learned not to take this fact of nature lightly. When we arrived onto the island we walked up the hill toward the cabin. I noticed that the girl’s suits and towels were still hanging on the line. I told Dave he should grab them so that they don’t get all wet. As he walked over to the line I noticed this wall coming across the water. It was not a wall of rain. It was simply a wall and it was coming fast. I yelled at him to leave the suits and come into the cabin. We barely made it into the cabin and the floor began to shake.

The cabin.

There is no basement. The cabin sits atop a hill on a cinder block foundation. The only place for us to go was to situate ourselves in front of the stone fireplace on the opposite side of the wind. Before we could even get huddled together on the stone ledge the trees around us began to snap. Some being pulled completely out of the ground, others were snapping off half way to the top. The noise was like nothing I have ever heard. For our teenagers, the whole ordeal was somewhat like a roller-coaster ride. Nervous laughter filled the air. For me, wisdom and experience made this the most frightening storm of my life. In a matter of less than ten minutes, our peaceful island looked like a war zone.

This picture was actually taken on our 2010 trip, but gives you a good idea of where we sat during the storm.

We were standing in front of the window to the left just as this tree went down. 

Every building was spared. Not one tree fell on a roof. The largest tree fell right on top of the clothesline that Dave had been standing at when I yelled for him to come in. It literally fell right between the two trees that were holding the line up. For the next couple of hours we sat in the dark as storm cells passed through. Around 11pm we heard a faint voice calling out in the dark, “Is everyone okay?” It was John! Somehow he had made it on his barge/pontoon across the lake. As my husband said that night, he looked like the old man and the sea. Covered from head to toe in rain gear and a small headlight attached to his forehead, he came walking toward the cabin with coolers and ice in hand. By nights end he had supplied us with a place to put our food and lamps to see by.  Night number two, we fell into our beds exhausted and hot, barley sleeping in order to keep our ears open for the next storm cell. That was Sunday.

John, the day after the storm hit. 

This is the tree that went down on the clothesline. 

One of the trees that snapped in the middle.

Monday morning John and Kim arrived with their good friends Ed and Gloria. The kind of friends that you can call at midnight the night before that hop in their car, no questions asked, and drive for hours with chainsaws in hand in order to help you out in a bad situation. The kind of friends that spend the next two days from sunrise to sunset in stifling heat and humidity cutting, lifting and raking all the while with smiles on their faces and laughter to ease the pain. All the while making sure we had what we needed – even a generator to run the fridge and water pump so we could have water to drink and a toilet to use. Remember, everything has to come over by boat. And once here, has to make it’s way onto the island and up a hill – a hill now covered with fallen trees. I’ve never seen people work so hard. That was Monday and Tuesday.

Ed, making his way through the next tree. 

John..."Everything has a process." And so it does. 

From left to right: Kim, John, Gloria and Ed. "The Fearless Four"!

By Wednesday the sky had cleared and the electricity seemed as if it was going to stay on. Finally, we could cook, see clearly at night and run our fans! I called my daughter as well as my folks and told them that they might want to consider staying home. Even though the storm had finally moved out, it was hot and the electricity situation was sketchy at best. Neither took me up on the suggestion. By Wednesday morning Aleela, Keith and baby Adella arrived. By Wednesday afternoon my parents stepped foot on the island. By Wednesday evening the second storm was on its way. This one forecasted to be worse than the first, 80+ mph straight line winds, damaging hail and lightening. This time we all barely made it off the island. Thankfully we had rented my folks a motel room in town due to the heat, so we all headed that direction. Let me tell you, I was in complete panic mode. When Keith notified me (he has satellite internet service on his phone) that the storm was on its way, my heart just sank. How could we have put all these loved ones in this danger? Why didn’t I tell them all to stay home? But there was no time for remorse, we packed up the bare necessities, ran down the hill and boarded the pontoon. Every second we were on that water seemed like an eternity. All I could imagine was that wall coming across the water again. There was no way we would stay afloat. Once again, we barely set foot on shore, ran up to our vehicles and the wind hit. Branches blowing across the road we sped towards town. We waited storm number two out at the Timber Lodge Hotel and by nightfall we were back on the island with no electricity. That was Wednesday.

Emma and Leslie coloring by sunset.

Thursday the heat and humidity moved out and we had a simply lovely day. My parents had purchased a one-day fishing license and Thursday was the day. We spent the morning and the better part of the afternoon under the shade of the pontoon canopy pulling up sunfish barely big enough to swallow a hook. And swallow it they did! Most of our catches were thrown back in only to be gobbled up by the eagles that surrounded us. One keeper in all, but it was a perfect outing. It’s been years since I have fished with my mom and dad. I will cherish those hours for the rest of my life. As our luck would have it, for some random reason the electricity went out again Thursday evening. There were thousands still with out power, so my guess is that whatever the fix was, it was temporary at best. That was Thursday.

Keith, finding a few hours to fish between storms.

Friday we awoke to extremely overcast skies, torrential rain and no electricity. It rained all day. The temperature dropped significantly and the cool breeze made it sweatshirt weather. A welcome change!! Thanks to Aleela and her ability to make just about any situation fun, the teenagers had a wonderful last night at the cabin. They stayed up late playing cards and pictionary and I was lulled to sleep by the sound of their laughter floating up the stairs to our room. That was Friday.

Adella and I, watching the rain at 5am, waiting for the electricity to return.

The girls playing cards Friday night. 

Saturday morning we all awoke at 4:30am with my granddaughter Adella. She was to be the alarm clock and with perfect timing she awoke on schedule. By 6:30 they were packed up and back on the mainland and by 7:30 we were in our van and heading into town. As we rode our fully loaded pontoon back to shore the weather could not have been more perfect. The air was crisp and still, the water like glass, the sky deep blue and the loons, not more than 20 feet away, calling back and forth to each other to greet the morning and bid us our farewell. It was surreal. No one spoke. There was only listening. There was only that moment, in that place, in that time.

I’m pretty sure if I could have listened into the minds of my teenagers I would have heard quite a different “tune” than what I was experiencing in that moment. By day three they were asking if we were going to stay or go home. Roughing it is not exactly a 16-year-old's idea of a vacation. Although, if they admit it or not, they had their moments of fun. Moms know these things.

So here I sit. It’s Wednesday of the following week. We’ve been home four and a half days and I’m still recovering. I think adrenalin (and pain medication) kept me going and it was not until we arrived home that I realized the toll the past two weeks took on me. Thankfully there was literally nothing for me to do when I got home. Our daughter Anna stayed back this trip due to work, and made our homecoming simply delightful. Once she heard how the trip was going, she made it her goal to make sure I was able to rest the minute I walked into the door. The house was absolutely spotless, the plants and gardens watered, the laundry done, the refrigerator stocked, the garage clean, the sheets changed…she didn’t miss a detail – even a welcome home sign on the kitchen whiteboard. It was a gesture of love and compassion in its truest form, and I was moved beyond words. This is my daughter, Anna.

I knew I wanted to write about the week eventually, but for the first few days I really struggled - one, because of pure exhaustion, and two, because I really did not know what or how I wanted to write. I wanted to recount the week and its details, yet something was pulling at me, as something always does. Something bigger.

As life will do after any vacation, it hit me pretty hard. Even though our time on the island was full of it’s share of struggle and daily maintenance, it was still a reprieve from the “norm”. And despite the coming and going of weather and electricity, there were moments pregnant with beauty and all that nature sings to our hearts in the spaces of stillness. These minutes were enough to carry me away from the pain of illness, to empty my mind of the family crisis and struggles left behind back home and to bring me comfort. There were times when even though I felt like I was literally drowning, there was peace to be found under the water. The peace that comes when you give up the struggle only to realize that you can float. The peace that comes when you stop fighting against what “is”.   

Enjoying the last evening on the island after the rain cleared. 

This is the lesson I brought home with me. I didn’t realize it at first. When life “hit” and I lay in bed crying, filling my head with stories of “I can’t” and “this is too much” and the pain of things I have absolutely no control over came rushing in like the flood waters up north – I finally just let myself go under. Like the moment Dave looked at me during the first storm and said, “Honey, this is all we can do” – I just had to let go. And you know what – I float. When we stop struggling, we float. We just need to rest enough of ourselves below the surface of things until we find ourselves upheld. Believe me, this is not an easy thing to do. But the heart of trust is believing you will be held up when you let go. It’s only under the surface that we become weightless and things slow down. This letting go - this is faith. That we cannot stay under for  very long only affirms that we must let go again and again in order to live life to its fullest.

Why didn’t we just head home after the first storm? That seems pretty obvious to me now.


It's a little bit funny...
(for Sara Jane)

It's a little bit funny this feeling inside 
I'm not one of those who can easily hide 
I don't have much money but boy if I did 
I'd buy a big house where we both could live 

If I was a sculptor, but then again, no 
Or a man who makes potions in a travelling show 
I know it's not much but it's the best I can do 
My gift is my song and this one's for you 

And you can tell everybody this is your song 
It may be quite simple but now that it's done 
I hope you don't mind 
I hope you don't mind that I put down in words 
How wonderful life is while you're in the world 

I sat on the roof and kicked off the moss 
Well a few of the verses well they've got me quite cross 
But the sun's been quite kind while I wrote this song 
It's for people like you that keep it turned on 

So excuse me forgetting but these things I do 
You see I've forgotten if they're green or they're blue 
Anyway the thing is what I really mean 
Yours are the sweetest eyes I've ever seen

Thursday, May 31, 2012

Sinking The Boat...and other great ideas!

I remember this moment as if it were yesterday.  This was our first stop on an island that what would soon become our favorite spot in the boundary waters canoe area of northern Minnesota.  We had not been resting long when my husband looked at me and said, “I think I’ll try to sink the canoe.”  The fact that this was my very first canoe trip, combined with the fact that we were a long, long way from any sort of civilization, as well as any cell phone reception, made this comment one of great concern to me. Doing the best I could to hold back any indication of doubt or panic, I simply said, “Why would you do that honey?”  He went on to explain to me that all canoes must be tested to see if they float after being capsized. He and his father had tested the canoe many years prior after they had first built it, but since he had re-fiberglassed it recently and made some fixes he had not yet tested it again to see if it would float.

I still didn’t like the idea. What if it didn’t float? What if we couldn’t get it back out of the water? What if we damaged it – this beautiful forty-year-old canoe? What if…? I simply did not want him to do it and I remember a bit of an argument because of his determination to find out. And so, with me standing on shore ready to take a picture of this most sure disaster to come, he gently rocked the canoe back and forth. With each dip the water slowly filled the canoe until only the stern and bow could be seen.  And then, in a moment of silent stillness, he stood and waited. Holding tightly to the rope, he watched as the slack let go and the canoe floated gently, barley above the water’s surface. The moment captured here in this photo.

My husband has taught me a great deal about fear; mostly, how to respect it and learn from it – and not run from it. It’s taken me books upon books to understand something that has always been second nature to him. Reality is exactly that – REALity. It’s what’s REAL. And it is far better to move towards that which is real than to struggle against it or worse yet, to pretend it does not exist.

This does not mean that life will always be easy. There’s risk and vulnerability involved. And sometimes we have to take on a lot of water before we realize whether or not we can float. But it’s not until we understand the truth of the matter that we can live in the honesty where joy and freedom reside. It’s in this space that we experience this world fully – not holding back, not preparing an escape route, not looking for alternatives – living fully in the reality of the present moment. 


I wrote this post for my facebook page today. Sometimes the idea for what I want to write comes to me with little to no work involved. This often happens when I have been reading something really good or I have had some sort of event in my life that demands my writing of it. And then, there are other times when I go looking. Today was one of those days. I often start by either flipping through some of my favorite books or I begin to scour the thousands and thousands of photos my husband has on file, waiting for something to jump out at me. The flipping didn't work. Nothing seemed to grab my attention. So I opened up our picture warehouse and began my perusing. Immediately, this photo pulled me in. 

I've looked at this picture hundreds of times. It's in our BWCA 2008 folder and is one of my favorite places to look. The trip itself changed my life. But for some reason, this picture told me something different today. As is often the case, it told me what is going on inside of me. Which, of course, I did not realize until I finished the writing! Kind of like a dream will do upon waking. 

I had a "boat load" of appointments over the past two weeks. It seems like my main doctors reached their six month evaluation point all at the same time. But it was during these visits that I made some rather big decisions. Decisions that came on the heels of a lot of pain and frustration. Decisions based on the potential for serious long term side effects, the ongoing inability to recuperate from chemo therapies and the recent "leveling off" of certain blood work. I have decided once again to try and taper off the prednisone that I have been on for three years as well as taper off the IVIg infusions. 

I've tried twice before to taper off the prednisone, only to return back to higher dose due to intense pain and illness. Prednisone is the drug people "love to hate", or so the saying goes. It's a miracle drug in regards to my illness, but the side effects, both long and short term, have serious consequences. But after reading Coping With Prednisone by Eugenia Zuckerman and Julie R. Ingelfinger, M.D., I have come to the conclusion that I have not given tapering a fare shake. In a nut shell, it is normal to feel extremely ill during the tapering and for months thereafter. As I gauge what I was experiencing with what seems to be acceptable withdrawal, I have decided that I can give this another chance. But I'd be lying if I did not tell you that it scares the shit out of me. 

In regards to the IGIg, this is my thinking. I've been on infusions for well over two years. When I began on them I was not on two of the other major chemo therapies that I am on. I would like to see if these drugs alone can manage my illness. The IVIg was not treating the autoimmune illness itself, it was treating a symptom - the peripheral and central nervous system issues I have been having. The other drugs I am on actually control the illness itself. It could be quite possible that these medications are now keeping things in check and I would no longer need the infusions. And the only way to find out is to fill the boat with water!

My initial reaction to these thoughts as they entered my mind was pure fear. Fear of the "what if". But as I worked through the fear what I realized was that my hesitation in attempting this was based out of my belief that I could somehow control my illness. A control that had become blind to ALL possibilities. Which meant that maybe, just maybe, letting go would bring about something better and not necessarily something worse. Once I realized this, I felt very compelled to speak to my main doctor about it. The appointment went very well and we were both in agreement as to what should be done. Let's see if the boat floats!

So here I am, week three on my first decrease of prednisone and one half infusion later, and I'm feeling pretty shitty - but giving it my best shot! I have to say, I'm not that thrilled about potentially messing up my summer with withdrawal symptoms. But is there really any good time? Nope! No time like the present, that's what I always say!

I do have some exciting news to report!! As many of you already know, being outdoors has always been very important to me. There is no holier place for me than the depth of the woods, surrounded by Nature. I have not been camping since getting sick. In fact, there is quite a dissertation in my application for social security in regards to the things I no longer can do, and camping is a big part of that. There is just no way that I could withstand the amount of work it would take to set up camp, let alone sleep on the cold ground, be without heat or cooling (whichever the case may be) or especially be any distance from a bathroom.

So this is my most recent anniversary gift (coming up on June 4th!)...

Completely loaded with one of these... ;-)

 ...and one of these...

....and some of these...

...and air conditioning...and heat...and all the amenities of HOME, right there in the woods with you!!!

Now, in my pre-illness days, I would have shunned this whole camper idea with all the piousness of a die-hard naturalist. But today....this little home away from home has made my dream of being out in the woods a reality again. 

Did I mention I have the best husband EVER?!?! Just can't imagine how I ever got so blessed. 

So, our first attempt will be this weekend, about 15 minutes from our real home as to not travel too far away this first go-around. I can hardly wait. Now THIS will most surely give me something to write about!

Until then, peace to us all ~

Wednesday, April 18, 2012

What I Wish I'd Said...

View from the couch.

Today is “one of those days”. Seems I’ve been having quite a few of those days in a row here lately. I’ve been seeing a physical therapist for some neck and back issues as of late. So at least I have a few new techniques in that area that give me some relief. But overall, the body simply is not cooperating. Joint pain that feels like it’s connecting the joints in my entire body like some sort of electrical “connect the dots”, completing a circuit that makes me feel like I’m on fire.  Add a little neurological numbness and I’m pretty much a bumbling lethargic mess! Oh….and did I mention GI issues that make whatever I put in my mouth feel like a game of Russian roulette?  I think you get the picture.

So after seeing my family off for the day, I decided there would be no denying this one. I unplugged the land line, put my cell phone on vibrate and hid it under a pillow in the other room (not really sure why I didn’t just shut it off…maybe I’m into the drama of it all?) and curled up on the couch. I avoid the bed during the days when I really need to sleep because Maggie, our biggest dog, will not attempt to sleep with me on the couch, and I really did not want to be disturbed. I have a tendency to sleep very lightly during the day, which can be frustrating.

I’m awake to report that I slept very soundly. From 9am to 11:30, I was completely out! In fact, I had a couple of those kinds of dreams where I tried to wake up and just could not move.  It felt good.  As I lay there slowly waking up, I began to think about a friend that had recently contacted me via email in regards to the frustrations she has been feeling because of her illness. Not feeling so well myself here as of late, my response was caring, but brief. There was a lot I wanted to say, but could not muster up the energy.  So in my waking, I thought about those things that I wished I would have said.

In her note, she made this comment, “There are days when I feel like life is just passing me by…” If I could pick out one fear that was most prevalent in my thinking the first two years of my illness, this was it. Life was literally passing me by, and it scared me to death. I was on long term disability, but still officially an employee of the Department of Human Services, and I felt that each passing second put me further out of touch from the job that I loved.  It just so happened that all my dearest friends were also my coworkers. Over an hour away and into the city, I worried that the distance would slowly take the dearest people from my life.  Not being able to hold a paint brush, I panicked that the talent I had worked so long to perfect would no longer be a gift I held. My children were either relying on the other adults in their life or fending for themselves. New things were being learned out there, my friends were going on retreats without me, my children no longer depended on me…life was passing me by. I lay there in my hospital room day after day begging for things to end, worrying that if I did not get over this illness I would never know happiness – real happiness – again. This was not the life I intended.

So now, here I lay, almost four years later. In the quiet of my home, sun breaking through the clouds, feeling really, really sick and I am completely at peace. And I think about what has gone on in my life between those days of endless worry and fear and these peace filled moments.  In some ways I’ve gotten better physically. I’m not nearly in the hospital as much. In other ways, I’ve gotten worse. I’ve added two new conditions and host of new symptoms. I’ve also had a major heart surgery that didn’t go so well.  The physical therapy I am receiving is to help me deal with issues that will never go away, in fact, they will only get worse.

But I love my life. This life.

You see, I felt as though my life were passing me by because I thought I knew what my life looked like. So if I’m not living that life, then I must be missing it.

I think that from a very young age we start to put together, piece by piece, the structure that we believe makes up a happy life. A long list of what is acceptable and what is not. These are good things…these are bad things. We label, we sort, and we check them off. One by one, creating the life that we believe makes us happy.  One by one, creating a picture of ourselves, building our preconceived egos.

I remember the moment I spoke to my boss on the phone, agreeing that the time had come for me to give up my position. A career I dearly loved.  A group of people that had become my closest friends. A future I built my dreams on.  A financial security my family depended on. The only analogy that even came close to what I was feeling during those days was the analogy of stepping off a cliff with the ridiculous hope that something would magically appear out of thin air and catch me. The kind of stuff you only see in cartoons.  A far cry from reality.

I didn’t realize it then, but in those moments of stepping off that cliff, I had begun the long journey of learning how to let go. Sometimes we hold so tightly to the list that we fail to see the reality that is before us. We spend our days forcing a round peg into a hole that does not even exist anymore. Life is continually changing. Every second there is a new you – based on what is happening right here, right now.  We have a choice. We can either listen to what the present moment is telling us or we can fight against it, holding on to our list as if they can save us, forcing our pegs into holes that no longer exist.

Or…we can learn to listen.

Listening to the present moment does not mean giving up. It does not mean letting go of things that can really make you happy and settling for second best. It means listening to your reality and opening up your life to endless possibilities. The potential and paths to happiness  - to true inner peace – that you never even knew existed.

Look at it this way. Last week my car was making an odd sound that made me feel quite uncomfortable to drive. My husband did a great deal of research and found out that the sound was due to bad bearings in the front driver’s side tire. He took the wheel apart, bought the tools and parts needed, put things back together and the sound disappeared. I now drive in comfort, content in the knowing that fixing the bearing made me feel better. Now let’s say that next week when I am driving the car I hear another odd sound. In my mind, I know what makes me feel better. So I ask my husband to please fix the front driver’s side wheel bearings…again. No need to do any research, I know what the problem is, and I know what makes me feel more comfortable driving.

Sound silly? Yes! In fact, it sounds a little unsafe. But how often we do this in our very lives! In the case of the car, we are more than willing to think things like – chances this is the same issue are pretty slim, I better see what else might have changed – or, it’s winter time now, maybe the cold has had some sort of impact – or, maybe the car is getting old and certain things go wrong as a car ages – the list is really endless because time changes things. And what made things comfortable in the past may not necessarily work today.  If we fail to listen to reality, then the car may never work well again.

The same goes for you and I. If we fail to listen to the present moment, we won’t know the truth of the matter if it comes knocking at our very door.

Today was just one of those days. I knew it when I woke up and I listened to my body. I understand that we do not all have the opportunity to listen so carefully and respond so appropriately. I can’t even most of the time. Family responsibilities, doctor’s appointments, new grandbabies…they all push caring for myself aside at times.  But the longer I deny my truth, the more uneasy and less peaceful life becomes. And if I deny it long enough, the consequences can be life threatening.

By listening to what this moment brings, by living my life open to change and letting go of my assumptions of happiness, I find myself in a quiet place of peace. Knowing that having compassion for myself is the greatest gift I can give – to me and to those I love.  And in the end, I find a contentment that, quite often, just makes me happy. 

Thursday, March 1, 2012

Behind A Speeding Ambulance

March clouds above our neighborhood.

Some time ago I read about the practice of looking up into the sky. My mind slips me as to where I read it or who even wrote it, but the concept has never left me. The writer was speaking to our ability to let go, live in the present moment and unattach from the things of this world.  Looking up into the depth of the blue sky helps me to experience the infiniteness of our being – of all things.  And in that infiniteness, the “nothingness” of all that is. In this experience there is no differentiation between me and this sky. We are one in the same.

And then there are the clouds. These clouds take many forms. They can gently move through, so slowly and peacefully that we don’t even know they are there except for the occasional shadow cast. Or, they can spread out across the sky in waves of energy and motion that take our breath away. I see the clouds as the good and bad that pass through our lives.  For these formations come and go, reminding us of the impermanence and unpredictability of all things – of thoughts, of experiences, of the lives of those we love.

Yesterday, I found myself following an ambulance that was carrying my mother to a hospital that was more equipped for patients critically ill with cardiac conditions.  If you look back at my facebook status from that morning, I had posted a prayer from the American Indian Chief Yellow Lark. The first stanza said this,
“Oh, Great Spirit,
whose voice I hear in the winds
and whose breath gives life to all the world, hear me.
I am small and weak.
I need your strength and wisdom.”
The morning had been difficult. Experiencing the onset of a painful flare, I had decided that the day would be dedicated to stillness – honoring the needs of my body.  Little did I know that my mother would be fighting for her life or that my father, in the enormity of the stress and worry, would end up himself in the emergency room with a heart condition.

So there I was, behind a speeding ambulance, being blown about by the wind.  I looked up into the sky – clouds rolling about from the storm that had kept my kids home from school that same morning – and it was as if those very clouds, that very wind, blew through the center of my being. It was the warmest, gentlest of winds – almost as if they were the winds of spring. It filled my lungs, and at that exact moment I was comforted by my own breath.  Breathing in, breathing out. Breathing in, breathing out. Like the presence of a dear friend, my very own breath holding me, comforting me – reminding me that in all the storms of life, it does not leave me.

My hands relaxed as I let the ambulance drive out of sight. I was no longer speeding. I was no longer listening to the stories of my mind…I was still.  I was honoring the needs of my body. It did not matter if I was lying on my couch in the comfort of my living room – unknowing of the events of the day, or if I was following an ambulance that was carrying my mother in the hopes of saving her life. I had found the space of the present moment; a sky blue and infinite. A peace beyond understanding.

The day was long and difficult. We cannot control the clouds. They will pass through all of our lives, without warning or care. Some days they will be full of beauty and some days they bring about the greatest of storms.  We can frantically try to out run them or hopelessly grasp at them trying to capture the pictures we see in their billowing forms. Both endeavors leaving us exhausted in our suffering. Or….we can let the winds pass through us. Letting go, experiencing what is, and finding peace. The choice is ours.

Yesterday, for whatever reason – I was blessed with letting go. Comforted by my breath, comforted by the friends and family that surrounded me – I found peace. As the clouds blow in and out of your life may you look beyond the formations to the infinite sky above and find the space of the present moment. It is always there waiting for you.

Tuesday, February 21, 2012

It's All Juicy Stuff!

                                                                                                                                                          Photo by David Ralph Johnson

Pema Chodron, in her book Start Where You Are, has a chapter entitled – Abandon Any Hope of Fruition. It touches on the subject of hope, and how when it’s misused can become an obstacle to living in the present moment. The understanding is that as long as we are continually wishing or “hoping” for things to change, they never will. As long as we have an orientation toward the future, we can never just relax and enjoy what we already have. The unspoken deal we make with ourselves is that once we “get there”  - then we will be happy. The problem is…we never arrive.

“One of our deepest habitual patterns that we have is to feel that we are never good enough. We think back to the past a lot, which maybe was better than now, or perhaps worse. We also think ahead quite a bit to the future – which we may fear – always holding out our hope that in might be a little bit better thank now. Even if now is going really well – we have good health and we’ve met the person of our dreams, or we just had a child or got the job we wanted – nevertheless there’s a deep tendency always to think about how it’s going to be later. We don’t quite give ourselves full credit for who we are in the present moment.”

By letting go of our hope of “fruition” we give up the idea that at some future time we will feel good. Instead, we enter into an unconditional relationship with ourselves, having an open heart and an open mind to whatever is – and whatever “is”, is what’s right here, right now. 

There is often a misunderstanding in the teachings of Buddhism. The Buddha is not someone to be worshipped. Buddha simply means “awake”. When talking about the “Buddha in you”, one is simply talking about our inherent nature – or Buddha nature – and what that implies is that everything you need, you already have! By loving ourselves unconditionally, we slowly uncover or awaken what is already there, instead of shielding it, protecting it or keeping it buried out of fear.

Being afraid, feeling angry, feeling impatient, feeling jealous, feeling depressed – these are all part of who we are. They are as much a part of our nature as joy and compassion are. Entering into an unconditional relationship with ourselves means that we agree to no longer run from ourselves. Because in reality, no matter how hard we try – wherever we go, there we are! The beauty of this for me is that once we understand this, there is no more categorizing my feelings into “right” and “wrong”. This leaves no room for guilt – and we can all use a little less of that in our days! Our feelings are simply that  - just our feelings.

The dictionary states that the meaning of fruition is “The enjoyment of something attained or realized. The state of bearing fruit.” Unlike the beautiful fruit in the photo my husband took this weekend, there is no waiting for the perfect moment of ripening within us. Who we are in this moment is exactly who we are supposed to be – whether afraid, insecure, jealous, lonely, confident, joyful or compassionate –
“It’s all juicy stuff!”