...from bed on a quiet summer night.

BWCA 2008

Last week Dave and I watched an outstanding independent documentary called Mile...Mile & A Half, The Muir Project . In a nutshell, it's about a small group of artists that "take a month off from life" to hike California's John Muir Trail, the 219-mile stretch from Yosemite to Mount Whitney. Usually these types of documentaries star the more typical adventurists. You know the kind, the "Mt. Everest-in-an-afternoon" kind with ripped calf muscles and million dollar gear. Not so in this film. It's a small group of friends, just like you and I (minus illness...or maybe not), who came up with a crazy idea one night after a good dinner and a bottle or two of wine.  But what I liked about it was that they were "normal folk" on a path to find out what the wilderness had to teach them and to ultimately share that lesson with others. This wasn't about climbing the highest mountain or enduring extreme weather conditions, it was about returning to nature for a duration where time and road were long enough that the weight of what separates man from Spirit was simply to heavy to bring along.

The Canoe BWCA 2008

As I watched the film, I found myself struggling between getting completely lost in the journey and grieving the fact that I am no longer able make that sort of a trip. In fact, what felt most painful was the realization that the ability to dream about making that kind of a trip was gone. I wanted so desperately to turn off the TV, grab a notebook and make my "pie in the sky" plans with the man that I love. Just like we did when we made our plans to travel from the Boundary Waters to the Gulf of Mexico in the canoe he built. When we had those discussions it was very much a reality. Did it ever happen? No...but it could have. Well, right now, at least in the foreseeable future, hiking 219 miles is realistically not going to happen. And that made me grumpy. Very, very grumpy.

What I went through after watching the video is no different than what any one of us goes through on any given day in our lives. It feels desperately specific to my situation as a chronically ill person, but in reality it is not. Oh, how often (if not always) our suffering comes out of our frustration with what is. For me, this transpires quite often into fear. Fear that I am somehow not where I should be in this life. Which usually comes directly after I have judged myself against this platonic ideal of "me" that I quite often compare myself to. There's even a "sick me" that I to compare myself to. But we all do it. We form this picture of what should be, usually a combination of traits from all the perfect people in the world that have mastered said quality, and then we hold that picture up to ourselves in the mirror and say, "What's wrong with me?" When in fact, we should be saying, "What's wrong with this picture?"!  

The only way I know to stop this insanity is to surrender. Yield to what is - don't resist it. Our fear would like to convince us that the only way to solve our problem is to create these negative thoughts. It's the same misguided parenting style that tells us the only way to get a child to change is to shame them. Make them feel bad. Oh, you may get a very obedient child out of the deal, but definitely not a healthy happy child. You and I are no different. After a few days of fear, which was directly transferred as anger toward everyone in my life that was not sick, I decided to just yield to what is. Stop resisting and drop the emotional negativity. Once we drop the negative emotion of a particular situation, once we surrender (stop labeling what IS), we are left with the ability to take action. Positive action. Like I stated in my recent post Eight Months...but then again, whose counting, "Good solutions come out of clear, unemotional thinking." I promise you, if you continue to surrender, give up the negative self talk, you will achieve positive results. How can they not be - they're based on reality!

So, there are no plans in the near future (you don't have to give up hope all together) to hike the JMT (I can at least abbreviate like a pro), but something did come out of watching that great little independent documentary (that I HIGHLY suggest watching). And that is this, that I went to my shelf and dusted off my copy of John Muir The Eight Wilderness-Discovery Books and started to read. And I kid you not, as I lay in bed last night reading, I felt like I was there. I could feel the breeze and smell the grass and hear the birds that he so eloquently describes singing high above me. His joy and wonder became my joy and wonder. There was a stillness that filled me.

Over 114 years ago John Muir opened his book Our National Parks with these words,

The tendency nowadays to wonder in wilderness is delightful to see. Thousands of tired, never-shaken, over-civilized people are beginning to find out that going to the mountains is going home; that wilderness is a necessity; and that mountain parks and reservations are useful not only as fountains of timber and irrigating rivers, but as fountains of life.    

When I return to Nature I return to myself, without all the weight of worldly trappings or that miserable picture of who I should be in my backpack. I would do good to remember this. For just as those six hikers began their journey by saying they left "life" behind and went to the JMT, I would say quite the opposite. They went to the JMT and found life. Just like I did, from the comfort of my bed on a quiet summer night.

He continues,

Awaking from the stupefying effects of the vice of over-industry and the deadly apathy of luxury, they are trying as best they can to mix and enrich their own little ongoings with those of Nature, and to get rid of rust and disease. Briskly venturing and roaming, some are washing off sins and cobweb cares of the devil's spinning in all day storms on mountains; sauntering in rosiny pinewoods or in gentian meadows, brushing through chaparral, bending down and parting sweet, flowery sprays; tracing rivers to their sources, getting in touch with the nerves of Mother Earth; jumping from rock to rock, feeling the life of them, learning the songs of them, panting in whole-souled exercise, and rejoicing in deep, long-drawn breaths of pure wildness. This is fine and natural and full of promise.

Peace,

 

My father, me, my daughter Amanda and Dave. Such great memories! Superior Trail, BWCA 2008

 

The other day, when I was still in the hospital, a visitor from Occupational Therapy asked me a question. The question was this, "So, what do you do for hobbies? And how have your hobbies changed since diagnosed with lupus?" This is always a loaded question for me. I have the long, 72 hour version that my mind quickly runs through, and then I have the short, 3 second one - "I write, I read, I do some painting..." The three second one usually satisfies people, but it always leaves me a tad bit empty.

I think, when I take a serious and honest look at myself, I can truthfully say I have come to peace with the changes in my life. But when the question gets asked, I always have this desire to share who I used to be. Which leads me to believe that there is some small part of me that still identifies with the "healthy" me. Maybe a little stuck in wanting to finish the "I am a..." sentence instead of just leaving it at "I am".

This is a round about way to get at what I really wanted to write about this afternoon - but here goes. The therapist persisted, and was curious as to how my painting had changed since becoming ill. I told her that prior to getting sick, I did mostly watercolor, fine detail, mostly botanical. With the onset of peripheral neuropathy, I no longer have the control to do this kind of work. I then told her that it was actually a good change, because I had always wanted to delve into the world of acrylic and become a little "more free" in my work. Which I have - and I enjoy immensely. What surprised me was my next line. It went something like this, "Now I am free to paint outside the lines...which pretty much sums up my life these days."

I've thought a lot about that response laying here in my bed this week. Awfully bold statement coming from someone whose bedridden! I have this funny little voice in my head that says, "You show 'em girl! Live it up, be wild...break a few rules!" And that funny little voice sounds a bit sarcastic. Some may think that when stricken with tragedy or devastating illness, it give us permission to no longer abide by "the rules". I've met some of these people in my life. Some are angry, some are rude, some use their illness as a means to be hurtful or get what they desire or think is "rightfully theirs". This is not at all what I mean by being free to go outside the lines.

What this means for me is that there is no right or wrong anymore. There is no should have or should be - there is no supposed to. There just is. I can take what is happening to me in this very moment and I can do one of two things. I can either fight it, or I can accept it. I think we have a hard time with the accepting because we refuse to let go of what we "think" the situation should be. I've said this many times before - accepting it does not mean waving the white flag of defeat. It means letting go and making the most of this moment - which moves us to the next moment in a much more graceful manner. Taking good care of this moment - holding it in our hands as we would a crying baby - is THE BEST way to care for the future. It makes so much sense to me - if my soul is crying for hope, or friendship, or peace, or the end of suffering - why would I ever ignore it for the regret of the past or the fear of the future. Take hold of your own "being" and love it as you would that crying baby. Nurture it. Calm it. Coddle it. Do what ever it takes to be present in that moment to be with your pain.

Today has been a test for me in this regard. Having gone backwards some from a couple of days ago, coupled with having my family gone for the evening, I have had a lot of time to just "be". I remember Pema Chodron talking about these times as being times of "training to be a warrior". I struggle with the warrior part - because I don't really like to think of my life as being a battle or a fight (thanks to my therapist!). But I do like the part about being in training. These difficult days are kind of like tacking an extra two miles on the end of a ten mile run - they make the next time just a little bit easier. I also believe, with all that I am, that suffering - any kind of suffering - makes us more compassionate people. And that is a very important goal in my life.

I've also been "hung up" with wanting to write in my blog, yet being affected by pain, medication, fatigue, fogginess... so I have chosen not to. I think this is contrary to my theory on painting outside the lines. What the hell? Spell a few words wrong, jump around a bit, forget the conclusion or maybe even just write for "me". At least I'm being real - at least you see me in the moment...

Whatever that is!


- Posted using BlogPress from my iPad

My bookcase...third shelf down from top.

Me walking the BWCA,  2008                 Photo by David Ralph Johnson

Some days come much easier than others. That's a pretty generalized statement, I know. But so true, none the less. Some days life just seems to work out in our favor. And then other days...well, we just wonder, what the heck? We attribute it to things like bad weather, getting out on the wrong side of the bed and the infamous "them". You know, "them". Those people. The ones that work for the IRS, the ones that move our stuff, the ones that hide our socks and purposefully find us on the highway when we are in a hurry. Those people.

I write in jest. But for people living  with chronic diseases - those "some days" cannot only be frustrating, but they can be painful, relentless and frightening. Those "some days" come when you least expect them. They come in the middle of your best days, they come at family gatherings, in grocery store isles, in movie theaters, at the gas station, in the car, while getting your hair done, on walks with your children...they come ten minutes after you have just taken a shower, curled your hair and picked out an outfit to have lunch with a friend. In fact, the best way to insure their arrival is to make any sort of a plan at all.

Last Friday I began having one of those days. The first indicator was an increase in neuropathy. Numbness and tingling, shooting pain, unable to balance on one foot, right hand doesn't work 'right'. And then the stiff neck...and then the headache...and then the vision problems...and then the diarrhea...and then the painful joints and muscles...and then the pancreas pain and eventually my heart starts to beat irregularly, sometimes leading to tachycardia. Not a pleasant experience at all.

I managed through the weekend pretty well. That's a Mom thing. Taking care of my family is good for me. It's good for my soul and it's good for my mind. But by last night, things had progressed and after only a couple hours of sleep, we were contemplating a visit to the ER. Have I mentioned how much I despise emergency rooms???

We made it through the night and were at the hospital by 7:00am for an already scheduled appointment, followed by IVIg. I figured if there was anything that needed urgent attention, they would catch it. After a lot of blood work and a couple of phone calls to my doctor's, it was agreed that we could proceed with IVIg. Being that this is also my chemo day... well, it was just one of those days. Except...

This is what I came home to:

  
A couple of months ago I finally made the decision to have someone come into our home on a weekly basis and help me with cleaning. It was a very difficult decision for me to make. Learning how to give up control take care of myself has been one of the hardest things for me. Little did I know that the women on the other end of that phone call would be such a beautiful person. Within moments of our meeting, I realized what a blessing Roxi is. Simply having her walk in the door, I am filled with the positive energy that emanates from  her. Honest, kind, compassionate and SO easy to talk to, there is never a lack of things to say.

Somewhere in between cleaning houses, spending time with her children and grandchildren, church work, gardening, yard work and taking care of her own family - she prepared this meal for us. And this meal is not just any meal. This meal is a casserole made with fresh organic beef off the farm and tomatoes from her garden, canned pickled beets, home made buns and frozen sweet corn...from her garden, of course, and the most amazing looking home made apple pie I think I have ever seen. WITH apples from her trees!


Mother Teresa has a quote that says, "We cannot do great things on this earth, but we can do small things with great love".


This was an act of great love.

And this day, this "one-of-those-days" kind of days, I am thankful beyond measure.

Oh, and by the way....

It was delicious!

This is what I have been doing lately. I didn't actually know that I was doing this until today. Twisting and turning and pulling, trying desperately to "arrive". Thoughts flood my brain. Frustrated by my minds inability to hold on to or organize any ideas. Discouraged by the barren screen in front of me. Exhausted by disease. So much to say.

So much to say.

I've begun this writing at least five times. Wonderful, glorious thoughts have come to me in my moments of reading and mediation. I want desperately to share. A Mother's Day, full and beautiful. Reflections of daughters' and relationships and the unconditional love that surrounds them. Hope, and the excitement that comes with experiencing 6000 people gathered together under the dream of One Heart One Mind One Universe. Sadness, by the suffering that our judgments bring.

These things keep me awake. So many things.

My ego and I, we work devotedly to each other, under the best of intentions, to bring our message. Twisting and turning and pulling in every direction. Not listening, not listening, not listening...

The most fundamental needs (the bottom four) are called "deficiency needs" or "d-needs": esteem, friendship/love, security and physical needs (health). With the exception of the bottom layer, if the d-needs are not met, the body gives no physical indication but the person feels unsettled or anxious. Maslow's theory suggests that the most basic levels of need must be met before a person will desire the secondary or higher level needs, which are called "Being needs" or "b-needs". These are the people that are motivated to go above and beyond the basic needs and strive constantly for growth and enrichment. The desire to be better. These individuals seem to be driven mainly by Being needs instead of deficiency needs. You know the type...the kind of people that get lost in their work or their art and need to be reminded to do basic things like eat and sleep! 

So why the brief lesson in psychology? Because it was in my remembering of this simple, yet profound theory, that I found comfort recently. As some of you already know, the past few weeks have been a slow, yet constant spiral down for me health-wise. By this past weekend, our main focus narrowed to just keeping me out of the hospital. After three days at the University of Minnesota Medical Center, the doctors determined that the tapering off of steroids led to a fairly miserable Lupus flare. It took a bit of diagnosing to determine that I was not suffering from withdrawal nor was I in adrenal failure, caused by my bodies inability to make it's own natural steroids. Just a good old flare. So in the end, it was back on the steroids for me. A disappointment for sure, but necessary to stop the disease. 

Remembering Maslow's theory allowed me to "let go" of some self inflicted guilt or solicitude that I have been feeling over the past month or so. The ability to express myself creatively has been a motivation for much of my life. But I could no more pick up a paintbrush than hike up to the top of Pikes Peak these past weeks. Nor has it been easy for me to write. Internally, I was playing tapes that sounded something like this..."Artists produce their best works during times of great suffering..." and "Ketra Oberlander painted some of her greatest works after she went blind" and "How many great books came out of the depression".... "Why can't I just WRITE something" and "Art doesn't take much energy. Now is the time to do all the things I never had time to do!" The fact of the matter is, until we feel that our basic needs are being met, self-actualization (creativity, spontaneity) becomes very difficult. 

At first, that thought brought me more suffering. Because, in my initial and very limited understanding, I surmised that I would need to take care of a whole bunch of stuff before I was ever going to be creative again. Before the world was to see any art out of the likes of me, I was going to have to get a little healthier, feel like my finances were in line, catch up with my friends and family, make sure I'm in good standing in the hanky-panky department and be able to say, "You are one hot looking, intelligent, uniquely individualized woman!" when I look in the bathroom mirror each morning. Then, and only then, could I summit the peak of Maslow's pyramid and attain true self-actualization. Thereby freeing myself to create the next Guernica or write the next  Gandhi's Truth. Oh......I'll never get there. 

How's that for not living in the Now? 

(waving white flag) I SURRENDER!

I surrender......I surrender? Ohhhhhhh.....I surrender . 

This doesn't mean giving up. What it does mean is inner acceptance of what is without any reservations. This is about my life - this instant - not the conditions or circumstances of my life, but more of my life situation. When I identify myself with my life situation I label myself - Lupus patient, chronically ill, dependent - and by labeling myself I keep the condition in place, actually empowering it and making a solid reality out of a temporary imbalance. By focusing on this instant, and refraining from labeling it mentally, the now is reduced to these factors: pain, weakness and disability. That is what I surrender to - the now. Surrender does not transform what is (at least not directly, because we have heard stories of positive thought curing people)

it transforms me. And as Eckhart Tolle states in The Power of Now, "When you are transformed, your whole world is transformed, because the world is only a reflection."

So how do I both surrender and meet those "d-needs"? Well, I think that by living in the Now, we get a sort of gondola skyride to the top. We still have to pass by all levels, but we do so with much more ease. There is a tremendous sense of freedom that comes from letting go of self-identification with your life situation - an inner peace that arises as one learns to relinquish mental resistance to the present moment. It kind of goes like this - when I am no longer regretting the past or worrying about the future - I am awake to this present moment. In this moment, in this very fluid, untouchable moment I have everything I need. Worry, regret, fear, loneliness, inadequacy, sadness are immediately and inexplicably transformed into peace. A peace that passes all understanding and defies all odds. This is how people survived the Holocaust and went on to become some of the great transformers of our time. This is how prisoners of war emerged after life times of torture only to love and care for the very people that brought them suffering. This is how some of the worlds most beautiful art was created in war times where even the most basic needs were not fulfilled. These people were awakened to the truth that all I need is all I have in this moment. And in that truth - in that surrendering - the most amazing peace is to be found. 

And for me, that peace is like a field of wildflowers blooming - bursting with beauty and opportunity. A ground fertile for creativity and infinite in possibility. All I need do is let go. Surrender. Be present in this moment. 

Who knew the top of a pyramid could be so beautiful.

Peace.