Showing posts with label Suffering. Show all posts
Showing posts with label Suffering. Show all posts

Friday, August 26, 2011

Who Do You See?

Who do I see?
I seem to be thinking about reflections a lot these days. It was only two weeks ago I posted about the reflection of my oldest daughter Aleela  And then more recently, in my post entitled Out Of Bed And Into The Yard, I spoke of how Life truly is a reflection of ourselves - our inner most self.

Over the past week or so I have had to spend a lot of time at the University of Minnesota Medical Center. I try to plan all of my appointments on one day since the facility is located in Minnesota, and we live in Wisconsin. Plus, my husband is my official chauffeur as well as personal care attendant. By combining appointments we minimize the amount of time he has to be away from work.

Since I am still quite weak and pain is a constant issue, he unloads me straight from the car to the wheel chair. Me, my purse, my water bottle and up until this past Wednesday, my lovely Foley catheter...or "pee-bag" as my endearing children call it.

Sometimes, if I am not too worn out, we have stopped at the grocery store to pick up a few things on the way home. On occasion, I have wanted to go in with him. There, he unloads me straight from the car to the motorized shopping cart. Me, my purse, my water bottle and my pee-bag. This was instantly noted on facebook by one of my daughter's friends - "Hey, saw your mom today at Walmart. She was driving the electric cart!"

This might all seem quite innocuous. In fact, if I were about sixteen and being the goofball that I was, it might actually be kind of fun. Kind of like wanting to drive a golf cart around on our town streets...or the lawnmower. Or it might even feel a little bit good, like when I got crutches for the first time. I couldn't get to school quick enough! Oh, the drama!

One of the most common issues among many people with chronic illness is the "invisibility" of it all. There are a host of sites out there that address the issue, like Invisible Illness Awareness, But You Don't Look Sick and Not All Disabilities Are Visible. To struggle daily with debilitating illness, which can at times be life threatening, and to hear "You LOOK GREAT", is most definitely a mixed bag. I remember reading a story on the issue about a year ago. The women writing had been suffering from Lupus for over fifteen years and had found little in regards to support from friends and family. And this women suffered from a very serious form of Lupus, Lupus Nephritis, in which the kidneys are damaged and eventually can lead to kidney failure. She had almost lost her battle twice before undergoing a kidney transplant. She wrote her story after experiencing a broken leg which required her to be in a wheelchair for four weeks prior to using crutches. The sad part of her story was the fact that she felt she had received more support over her broken leg than she had received in the accumulation of all fifteen years that she had suffered from Lupus. I won't get into all the details of her story, but I must note that she was a remarkably amazing women and used this knowledge to improve not only her own life situation, but the lives of many others.

I consider myself extremely blessed in regards to the support I get from my family and friends, as well as the vast network of friends I have made through One Moment One Life. Not once, in all the seconds of this relentless illness, have I ever felt lonely or longed for support that was not there. My heart aches for those that travel this road alone. I can not imagine it. But I have understood the complex balance of feeling so terribly sick, yet striving to remain positive and not become a burden for those that surround me. Don't get me wrong - I am in no way stating that I think we should ever "be" something that we are not. But those that struggle with this issue know the importance of taking care of our loved ones as well. I think of all the mothers, wives, sisters and daughters out there that force themselves to get up and showered each morning, struggling to stand up from the weakness that pulls them down, pressing make-up onto places that refuse to be covered - just so that we don't "look too sick" and cause another day of worry to those that love us. All the while, longing for just one day free from the pain.

So, I was surprised and a little bit confused by the emotional process that I went through when traveling the halls in a wheelchair the past few weeks. Having not "lacked" in need of support or understanding, I was not surprised at my sense of neutrality in that regard. In other words, it didn't "feel good" to "look sick". There was no vindication. But this is what did strike me - and has been with me ever since  -

The eyes of those looking back at me.

I couldn't figure it out at first - what I was seeing or how it was affecting me. And maybe I'm still off base or a little impaired by my own situation. But this is how it felt

We are afraid of what we don't know. We are afraid it could be us.

I don't like riding in the wheel chair. I especially did not like the pee-bag and tube that I tried to hide in my beautiful home made bag that my daughter Amanda made for me. I know that the embarrassment that I held for myself affected my demeanor. I could feel it in my posture and the tone of my voice as I spoke to people. Once I realized what I was seeing, there was a change in me. I felt compassion for those that I was passing glances with. Like I no longer wanted to match hasty glance for hasty glance. I wanted to reflect the beauty that I was seeing. The human being I was seeing deserved a human being in return. And in those moments, I felt completely connected, on a level that is difficult for me to even explain.

I want to say that I don't know what changed. How I looked at the world or how the world looked at me? But I do. Because I believe that the world IS a reflection of ourselves. That Nature, and life in general, DOES wear the color of the Spirit. And in finding ourselves in others, we find compassion. And in finding compassion, we find ourselves.

What does your world look like to you? Who do you see reflected in the eyes of those you meet...
or in the mirror in front of which you stand?

I see you, and you are beautiful.    


Friday, July 22, 2011


                                                                                                                           The love of my life.                                                                                                                     

the principle or practice of unselfish concern for or devotion  to the  welfare of others      ( opposed to  egoism ).
Animal Behavior, behavior by an animal that may be to its  disadvantage but that benefits others of its kind, as  warning cry that reveals the location  of the caller to  predator.

Altruism is one of those words that I have read and heard in the past, but never really had a definition for in my mind. One of those words you just kind of take for granted that you know. Most times, this process serves me well, but every so often I find that I really don't understand a word - or as is quite often the case, my husband gently informs me that I've got it wrong completely. So I looked this one up to be sure. 

I decided to look up the definition this week after reading a quote by the Dalai Lama. It's a one liner, but it's a fairly unambiguous statement and one that I wanted to understand. This was his comment - "The ultimate source of happiness is altruism." 


Pema Chödrön has written a book entitled The Places That Scare You - A Guide To Fearlessness In Difficult Times. I have talked about and quoted this book before. It's a small book, but one of those that is so tightly packed full of wisdom that I can barely read a half chapter without having to sit and digest for a day or two. It's a good book. As I have mentioned before, she talks a lot about how to manage through difficult times. One of the suggestions she makes quite often is to allow yourself to feel the energy of a difficult emotion, but drop the story-line that we tell ourselves. My best example of this is when I am in debilitating pain and unable to get out of bed. If I can just lay there and concentrate on the pain without turning on the tapes in my mind that say things like "I can't do this any more" or "This is never going to end" or "I have been doing this for over two years now, I can't stand this" - then my pain and the whole situation is manageable. I've tried it before and it makes just as significant of a change in my ability to cope as medication can. In fact, at times, I have avoided medication all together. 
She makes another very interesting point about our experiences with suffering. She states that we learn just as much from our failures (or suffering in general) as we do from our successes. Specifically, this is the quote:
"In cultivating compassion we draw from the wholeness of our experience - our suffering, our empathy, as well as our cruelty and terror. It has to be this way. Compassion is not a relationship between the healer and the wounded. It's a relationship between equals. Only when we know our own darkness well can we be present with the darkness of others. Compassion becomes real when we recognize our shared humanity."

At the risk of sounding like a broken record, the past weeks have been very difficult. The frustration of a disease that is relentless in it's interference with my every waking moment - relentless in it's unpredictable-ness - relentless in it's affect on almost every bodily system - relentless in it's one constant voice of pain - has taken it's combined toll on me. 
The past weeks have also been filled with all that comes with caring for and being with my mother who has recently suffered a stroke. Her health has been slowly failing for a couple of years now, but at the age of 69, the sudden onset of this condition has been extremely difficult for her, for my father and for our family. As an only daughter, and the only child living near my parents (my brother and his family live in Louisiana) I find my desire to care for my parents quite often becomes preeminent to most everything else. It's a difficult balance. For those of you who have struggled with ill or aging parents, you are well aware of the physical as well as the emotional toll this can take. It's a sadness that aches from the deepest of spaces within for the people you love beyond words. 


I've thought a lot about the things that I have read these last days. I've thought about the things that I have written in the past. I've thought about the quips and quotes and do's and don't's that have so easily dripped off my finger tips and onto this white space. I've thought about the peaceful, bird filled mornings that lent themselves to my creativeness. The cups of coffee, the walks in the woods, the moments of stillness... But here is where the rubber meets the road. Here is where the opportunity exists to put my money where my mouth is. Here, in these moments, it is - chaotic, emotional, frightening, exhausting and unfair - far from still. In the blur of tragedy, life moves so swiftly that even remembering to breath becomes somehow lost in the current. As I lay in bed, devoured by the days events, I wept, "Why? Why me, why them, why now? Isn't enough, enough? Can't we at least get through one devastating event before we fall headfirst into the next?..."

And so goes the story-line. And so plays the tape.

As I lay there, I remember thinking to myself - how do I do this? How do I separate "the energy of the emotion" from the "story-line" that I know that I am telling myself. I can hear it. But what does all that mean? So I just started telling myself - be sad. BE sad. BE angry. BE lonely. These are difficult days and sadness is very real. I allowed myself to feel my suffering. Do you know what sadness feels like? What loneliness feels like? What fear feels like? Your stomach hurts. The center of your chest aches. Your body shakes. Your throat tightens. You feel the stick of sweat accumulate beneath your clothes and the tears fill up your eyes and run into your ears. You want to curl up into a ball and then you want to punch your pillow. You want to scream and then in the very next breath, you have no voice at all

Sadness hurts. It hurts so desperately that we will do almost anything to make it stop. But if we do - if we find an alternative to feeling - running away, taking a drink, popping a pill, eating, losing ourselves in the television, hurting someone we love - then our sadness only deepens and grows stronger for another day. But if we feel - if we stay with that painful energy long enough, we gain something very beautiful - and that is compassion. Compassion for ourselves and compassion for those we love. For it is in our very own darkness that we recognize our shared humanity. The comfort of the whole of all creation gathered with us in that very moment - sharing in our suffering, cultivating compassion and leading us to "ultimate happiness". 

This is peace. 

Tuesday, July 5, 2011

Minds Run Amok!

My bookcase...third shelf down from top. 

Lately, I have been suffering more than I like. 

I am sure that statement not only sounds a bit odd, but it most likely sounds a little “woe is me” as well.  Odd, in the obvious…who really likes to suffer at all – and “woe is me” in that…well, get over it Sunshine, we all seem to be suffering more than usual these days! One does not have to look far (maybe your own mirror) to find something that brings you great suffering.

So why the lead off?  Because when I am struggling to write, sometimes the best thing to do is to just stop forcing the situation and dig down and find out what’s going on Now.  So in a roundabout way, after letting go of a little bit of ego…ok, a lot of ego… and expectations, this is what it all shakes down to.

I am not feeling well physically these days.  More than the usual.  I’m not completely sure why this is the case, or which comes first, the chicken or the egg, but I have a general idea of some contributing factors.  Summer is WONDERFUL, but very different from the slow routine of winter. With the kids in school, Dave at work and shorter days, winter lends itself to rest. Summer, on the other hand, is full of activity. Kids home, Dave laid-off from his job with the State of Minnesota, longer days, things to do outside and scheduled summer-time events all present a multitude of opportunities to say, “Yes!”  And if there is one thing that I find most difficult to do – if there is one thing that I remain most  obstinate about – if there is one concept that I must re-learn time and time again, it is that of knowing how and when to say “no.” Especially to my family and those I love.

Carelessness in caring for Me leads to pushing beyond my limits. Convincing myself and others that, “I’m okay” or “It’s alright, I feel good today” or “I’ll rest later” only ends in an exhaustion that snowballs very quickly into increased disease activity and suffering.  Suffering for me, and suffering for those around me.  It was my inability to “think” that set me on this roundabout path to shedding a little ego today. “Brain fog”, or even sometimes more serious cognitive dysfunctions can be a symptom of Lupus as well as other autoimmune diseases. It is a symptom that I have struggled with to varying degrees since the beginning of my illness.  

Over the past month or so, updating the website, or even my facebook page has been extremely difficult. It is the reason why my entries have decreased dramatically.  I want to write, but the more I pursue the desire the farther away the reality becomes. Even reading has become cumbersome. I pick up books only to find my way through maybe two or three pages – reading paragraphs over and over again trying to connect thoughts. The same goes with my writing. What once flowed effortlessly now has become painfully slow.

Why? Why, when things seem so clear, do I let them get so out of control? I don’t have to go far to read my very own writings and think to myself, “Who IS that person?” And, “Where did she go?!?” Or sometimes I even wonder if my “togetherness” is a bit out of touch with reality! “Now this is the real world. Crazy, complicated and fast paced.  Enlightenment is easy if you’re living in a hut on the top of a mountain (or in a hippie village as I was most recently told) but this is real life here, sister!”

Unable to see the answer to my question, I was at least able to understand that I was suffering. And that my suffering seemed a bit out of control. Yes, I have a disease that creates a tremendous amount of pain and there is not much I can do about that. But not getting enough sleep, not eating right, giving in to bad habits, not finding time to meditate because I am “too busy”, not reaching out for help, neglecting my physical  appearance, reaching for a bottle of medication before a tall glass of water and a good nap – these things ARE in my control.

Knowing that, I went to my bookshelf and picked up Eckhart to help me out a bit. I knew I would not remember where to look, so I just grabbed  The Power of Now , cracked it open and began to read.  Funny how karma is…

I opened to page 33 – Chapter Two – Consciousness: The Way Out Of Pain. Subtitle: Create No More Pain In The Present.


“The greater part of human pain is unnecessary. It is self-created as long as the unobserved mind runs your life.”

This I know.
When I am tired, when I am overbooked, when one activity of the day blindly runs into the next activity of the day, when I eat on the run and neglect the sleep I need – there is no room for mindfulness.  In fact, I am functioning on a mind run amok. Living in pure maintenance mode - minutes, hours, days and weeks melt into a current of life that neglects all in its path and leaves me falling into bed sick, exhausted and discontent.

This is SO true! Think about it. Food never looks so good as when you finally decide to go on a diet.  “The intensity of the pain depends on the degree of resistance to the present moment.” If I’m hungry right now, and I tell myself that I am going to resist that hunger pain and not eat – the pain of not being able to eat can quickly become insurmountable. And I eat my chocolate cake anyway.  The present moment can be quite painful.  We will go to extremes not to suffer in its wake.

I don’t like not being able to take care of my family. I don’t like not being able to keep my home exactly as I used to. I don’t like not being able to be physically active. I don’t like staying home as others have their fun in the sun.  I don’t like saying No. And sooner or later, it all becomes too painful.  Moreover, if I am not careful, my unobserved mind – my mind run amok – will resist that pain at every turn. And inevitably what ensues is suffering.

The funny thing is, what are we moving so aimlessly fast towards? As we rush through our days – saying yes to everything and experiencing nothing – where are we going? What is the end result? Our illusion of time tricks us into thinking that there is some prize out there in the future. Happier kids, better life, more money, bigger house… out there – somewhere. When in reality, ALL WE EVER HAVE IS THIS VERY MOMENT. Make the Now the primary focus of your life and there is no more resistance. Instead of fighting reality – become part of it.

My reality is this. I have an illness that requires me to expend my energy very wisely. There are times when I can say “yes”, and there are times when I must say “no”.  I can fight that with all my might and suffer great pain (with the illusion of success or superwomen-hood), or I can accept the present moment and be completely alive in it. Caring for the Now, I ensure a healthier future for my family and myself. It may mean staying home, it may mean dirty sheets for yet another week – or it may mean not being able to write or paint – but what could be more insane than opposing life itself? The irony of it all is that in what appears to be saying “No”, is actually saying “YES” to life.  And once we say “YES”, life suddenly begins to work for us rather than against us. 

Sunday, May 15, 2011

Picture This

                                           Photo by David Ralph Johnson

One of the wonderful things about having a husband as a photographer is all the beautiful art that surrounds our home and fills our computers. Sometimes I forget. I take things for granted. Beauty becomes commonplace. 

While sifting through some of his work on facebook, I happened upon this picture. One of our friends had commented on it saying, "When you can get people to pause and try to figure out what's going on or imagine a dialog, you've got a good picture." I have heard the same idea stated by another photographer friend of ours when he says, "A good picture asks more questions than it tells". 

This is a good picture.

I won't ever know the dialog was that filled this moment, I can only imagine. But one word resonates - pain. Emotional pain.

We are not without suffering in this life; it's a given fact. Despite even our best attempts at understanding or coping - or our attainment of complete consciousness - disease, loss, death... these things find their way into all of our lives and bring with them very real suffering. They come without warning and without choice. 

Emotional pain - the kind I imagine in this picture - is inevitable as long as we remain identified with our minds. As long as we are unconscious, spiritually speaking. Being "unconscious" means not living aware of the present moment. Instead, we live caught up in the pain of our past or the worry of our future. This type of living is consumed with thought. When we are consumed with thought we can not, at the same time, be aware of what is truly happening right now. And when the unobserved mind runs our lives, we create our own pain.
As long as we are unwilling to accept Now, we resist what Is. As long as we resist what Is, we will continue to suffer. Acceptance means freedom. And freedom means peace. 

One of the biggest problems with emotional suffering is that we project our pain onto others. If I am without joy, I will project my discontentment with life onto all those I come into contact with. And sadly, as is human nature, I will do so much more with the people that I love.  

When we project our own pain onto people, we can not see them for who they really are. 

Let me give you a real life example of this. My husband is a photographer. There are two main aspects to being a photographer (in my mind). There's the part about going out and taking pictures. And then there's the part about sitting at the computer...downloading, organizing, filing, working the pictures up, posting them to the web or online gallery... it's a big part. This can take hours. And hours. And hours. You get the picture - figuratively and literally. 

If I am suffering, in any way, the second aspect  can create an irritability in me that feels nothing short of toxic. After hours of self-talk (consumed with thought) I can feel slighted, jealous, angry, hurt, mad, self-righteous, vengeful, irritated, unhappy, discontent... Oh, the list could go on. And in passive-aggressive form, I will eventually make some sort of hurtful comment. Yep, that really can be me.  

If I am not suffering, the situation can be quite different. Lets say I am physically feeling on top of my game. Because of this, I make plans to be with my girlfriends - who completely fill my cup. Maybe it's an afternoon away, or maybe I am fortunate enough to spend a weekend at Clare's Well. Maybe I even spend a little money on myself. I feel good. How do you suppose I react now, to the hours and hours my husband has been on the computer? You guessed it. No problem! In fact, I may even feel joy in knowing that he was happy while I was gone and not preoccupied with loneliness or upset that he had to make his own supper!

What's changed? 


The second aspect of photography remains the same. It is my resistance to what Is, my preoccupation with the past and worry of the future - my very own pain - that  keeps me from experiencing peace. Or joy. Or happiness.  

When we find ourselves emotionally unpleasant towards others, it's a good indication that we need to pay attention to our own pain. 

Be still. Sit with it. Listen to it. 

Picture this ~
In accepting what is
we can transform the moment,
and become awakened to the beauty 
that surrounds us 
and lies


Wednesday, May 11, 2011

Letting go...

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...

Under of the rumblings of my distress
I hear...

Let it go.

Set it down. 

Give it space.  

 Things become clearer when not held so tightly.

Watch the beauty unfold. 
Breathe each letting go.

Feel the freedom.
Follow the flow to stillness, as the space takes what is complicated...

Making masterpieces 
our mistakes...

...and finding

Tuesday, May 3, 2011

Heart of Compassion

                                               Photo and art by me....hands by Anna.

Call Me By My True Names

Do not say that I'll depart tomorrow - 
even today I am still arriving. 

Look deeply: every second I am arriving
to be a bud on a spring branch,
to be a tiny bird, with still-fragile wings,
learning to sing in my new nest,
to be a caterpillar in the heart of a flower,
to be a jewel hiding itself in a stone.

I still arrive, in order to laugh and to cry,
to fear and to hope,
the rhythm of my heart is the birth and death
of all that are alive.

I am a mayfly metamorphosing 
on the surface of the river.
And I am the bird which, when Spring comes,
arrives in time to eat the mayfly.

I am the frog swimming happily
in the clear pond.
And I am the grass-snake
that silently feeds itself on the frog.

I am the child in Uganda, all skin and bones,
my legs as thin as bamboo sticks.
And I am the arms merchant,
selling deadly weapons to Uganda.

I am the twelve-year-old girl,
refugee on a small boat,
who throws herself into the ocean
after being raped by a sea pirate.
And I am the pirate,
my heart not yet capable
of seeing and loving.

I am a member of the politburo,
with plenty of power in my hands.
And I am the man who has to pay his 
"debt of blood" to my people,
dying slowly in a forced labor camp.

My joy is like Spring, so warm
it makes flowers bloom all over the Earth.
My pain is like a river of tears,
so vast it fills four oceans.

Please call my by my true names,
so I can hear all my cries and laughter at once,
so I can see that my joy and pain are one.

Please call me by my true names,
so I can wake up,
and the door of my heart can be left open,
the door of compassion.

                                      ~ Thich Njat Hanh


Wednesday, March 23, 2011

…but how are you doing?

Leave it to adult children to always "tell you like it is"! And having seven daughter's....well, let's say that our household is never short on opinions or advice! And believe me, I would have it no other way.

My oldest daughter and her husband recently returned from a weeks vacation in the Dominican Republic. It was a much needed reprieve from work and winter weather. When she got home, she decided to check my blog to see how I have been doing. Always my biggest fan, and always supportive, she had some advice for me. It went something like this.."You know Mom, your articles are always so inspiring and there is always such a good message. But sometimes I just like to know how you are doing."  She makes a good point.

I think that when I made the transition from Friends of Theresa to writing a blog (which has been very healing and quite a good mental exercise for my cognitive issues) I somehow latched on to the assumption that people needed to hear a little more of the positive and not so much of the painful day to day illness. I actually think this has more to do with me than you. But in reality, Friends of Theresa was developed originally for one reason, and that was so that friends and family could keep in touch with my health without having to make a phone call or a visit - or to put the onus on my husband to keep everyone informed. So, that in mind, I hope to strike up some sort of balance. Thank you, lovely daughter, for more good advice!

I struggle with a lot of different issues these days. I'm actually working with my rheumatologist over the phone this week to try and get a flare under control. A flare, for me, is basically any increase in disease "activity". Sometimes it lands me in the hospital, like last month. And sometimes it just incapacitates me. Which does not take much since I'm generally "incapacitated" in some form or another. On a normal day, fatigue and pain are tolerable. Joints are sore, but I am able to use them.  Neuropathy, although very annoying, is not painful. I am able to eat without extreme pain or nausea, but my diet is limited. I may or may not be running a fever and glands are not swollen. Thinking comes easier and my eyesight allows me to read. Headache is lingering in the background of everything. Night time is better, yet still broken. I am usually awakened by extreme dry mouth and throat or joint and muscle pain. A drink and change of position and I am back to sleep.

When flaring, like this week, everything is exacerbated. Joints and muscles make movement very difficult. Fatigue is so extreme that being up longer than 15 minutes is very difficult. I spend most of my day up and down. Throw a load of clothes in the washer - lay down. Fix myself something to eat - lay down. Work on the computer for a few minutes - lay down. Let the dogs out - lay down. You get the picture. Headaches are intractable, neuropathy is painful  - and frightening - and nothing seems logical. Thinking is a real chore and remembering is even worse. Consistent sleep is next to impossible. Everything gets canceled when I have these weeks - which are more often than not. Just eating and going to the bathroom become all consuming and painful activities. I become completely housebound.  And if I can not get things under control, then I end up in the hospital.

I'm not quite sure what my issue is this week. It seems the past few months I have been taking a gradual turn in the downward direction and it scares me a bit. Three months ago I felt like maintaining was tolerable. I don't like the new baseline I seem to be establishing these days. Living one notch up from going into the ER is not "doable" for me. We have increased the chemotherapy to a maximum level, so the only other alternative is to start going back up on the prednisone. Not the plan for tapering we had hoped for, but I'm willing to do just about anything right now to feel a little better.

I also worry about the toll it takes on my family. It's not just the physical toll either. In fact, I now have a women coming in weekly to help me. But I am more worried about the emotional toll. It's tough watching your wife or your mom suffer. As much as I try to "look" well, they know the difference. And they worry. Walking on eggshells, looking for the littlest signs that mean Mom is heading to the ER. I hear it in their voices and see it in their eyes. I wonder about all the things they are not telling me in order to not add to my burden and it saddens me to think there may be times when they don't have "Mom" to turn to. And of course, all these things seem much larger the sicker I am!

In all honesty, the only thing that gets me through to the next day is making the most out of this one. Finding the good in even the worst situations. I read a quote the other day in Tolle's book,  A New Earth - "The primary cause of unhappiness is never the situation you are in, but your thoughts about it." When you think about it, that's really true. When I am stuck in bed and can't do anything else, if I lay there and tell myself how miserable I am, or think about how I am never going to get better, or obsess about how many times I have been in this situation, or worry about never getting out of this situation...well, I can send myself right down into a tailspin so fast that even one of Dave's BEST jokes can't get me out. But... if I look out my window and think about the beauty I see out there, or look into the eyes of one of my dogs, or think about how fortunate I am to have such a beautiful home to "be" in....well, I can find the blessing in the moment. Having the choice - I choose the blessing.

These weeks are tough, no doubt about it. And this past week has been a struggle. But like I always say, it makes a world of difference knowing my friends and family are out there keeping track of me. In the meantime, I'll do better at sharing the good AND the not so good times. I guess it's just part of the deal!


Monday, March 21, 2011

The Women In The Mirror

Aleela and I running in Marshall, Minnesota

The second day of Spring! A welcome season, indeed. Especially this year. I have always prided myself in being a true Midwestern girl, loving the change of seasons and all they have to offer. Winter in general has been a time of rest for me. Less hours in the day has always meant less to do and more time hunkering down with the family watching good movies and getting to bed early. Since becoming ill, my reaction to the change of seasons has evolved significantly. For example, much of my time is spent indoors regardless of the season. Sunshine and heat can be my worst enemy and if not taken with precaution can lead very quickly to a flare. So the reprieve that winter once offered now feels even more restricting. This year in particular, I had to work very hard at keeping things in perspective and staying in the "Now".  But I'm not always successful, and sometimes that's not only OK, but maybe a little bit necessary. 

This will be my third Spring "post-diagnosis". I'm hoping to be be better prepared this year. The past two years things really crept up on me and it was not until I did a considerable amount of suffering that I finally figured things out. Much like holidays and birthdays bring suffering to those that have lost loved ones, so too, I feel loss associated with particular times of the year. The embodiment of my loss of health is epitomized by one thing - my inability to run. I started running when I was eleven years old. I knew at a very young age there was something in running that gave me space. It opened me up, cleared out the mess of life and made me feel good about myself. Until this illness, running had seen me through every struggle. Whether it was the birth of babies, back surgeries, the death of loved ones or the end of a marriage - running helped me to heal.  And springtime was my favorite time to run.

One of the best things about running for me, was the opportunity it presented to run with my family. Dave and I talk frequently about all the cities and states we have run in. It's fun to go back to certain locations and think about all the roads and paths we have traveled. Hundreds and hundreds and hundreds of miles on foot, each step carrying with it a story. Even around our own home, there is about a twenty five mile radius of endless country roads that bear the footprints of our travels. We can drive those very same roads and never experience the sights, smells and sounds that we do when on foot. It's unexplainable.

My oldest daughter Aleela is also a runner. The years immediately preceding my illness were some of our best together. There is a lot of conversation that goes on when you are on a twenty mile run together. We traversed some pretty intense terrain in order to get miles logged during marathon training. I remember one summer when Dave was unable to train with us. We had traveled to Marshall, Minnesota where she lived so that she would not have to do her "long run" alone.(we did this a lot for each other, alternating who had to travel) Dave drove us out into the country so that we could run our seventeen miles back into town with the wind at our backs. He drove slowly behind us the entire way carrying our water and food, and offering transportation if either of us couldn't make it back home. Going only about five miles per hour the heat off the engine made the thermometer rise a bit more than normal, but even at that, it registered 118 degrees Fahrenheit!

A record run!

Zumbrota, MN
Winter or summer, we never seemed to let the elements keep us from our time together. On one occasion we could not physically be together for our long run. The weather was horrible. About thirty-eight degrees, twenty-five mile per hour winds and torrential rain was the mix for the day and we both needed to log about fifteen miles. Half way through the run my cell phone rang and it was Aleela. I could barely understand her because of the howling wind and rain! That was one of the few times we agreed to give up the fight and go home. Thank goodness for husbands and cell phones!

Sometimes I long so desperately for those days that I can barely swallow the lump that fills my throat. I suppose, on the outside looking in, most would think us absolutely crazy. I wish I could describe better how much more those experiences were other than just "exercise". I think what I am realizing is that it was during those times that I began to experience what it is like to be present in the moment. And to have been in that space with the people I love most in life was a gift beyond measure.

 This past weekend I was with my daughter Emma in Kohl's. She was in need of some new summer clothes and we thought we would take advantage of one of their big sales. She's easy to shop with. It usually takes her about fifteen minutes to grab up a few items, try them on, take what fits and head to the check out. I usually wait outside the dressing room with all the other moms for the "approval viewing". This time I stood there alone. And there it hit me. Reflecting back at me in the mirror ahead, was the image of a women I am still coming to grips with today. Two and a half years of illness, hospitalizations, medications and inactivity have definitely taken their toll. Hair loss, skin changes, teeth coloring, dark eyes and prednisone weight make looking and feeling healthy a struggle to say the least. A year ago, even though I was unable to run, I would have looked at this issue as a challenge. Much like I would have done during my running days. "Well then, set some goals! Write things down, stick with plan and change my situation." If I were to have been writing this article a year ago I probably would have ended it with some sort of analogy about running. "Even though I am no longer hitting the pavement with my husband and daughter, I am still running marathons of a different sort....blah, blah, blah..." But I'm not.

The women in the mirror is indeed a different women. She's a better women. I may still struggle with the image I see (and even that is getting much better), but the women looking back at me is no longer running - TO anything or FROM anything. My life is much less about "becoming" and much more about "being". I guess you could say I'm experiencing my own change of seasons. Like we all must do at some point or another as the days of our lives pass so quickly by. And it's OK to sit and think for a bit about the paths our feet have trod along the way. But it's the very ending of those stories that make way for the new. It's the cold, barren dirt of winter that provides the life giving energies to the beauty of spring.

For in everything, there is a season. 

I love you, Aleela.