Friday, September 30, 2011

Facts of Life

I've been doing some thinking about why I blog lately. It's funny, I read a lot of blogs and it seems that it's inevitable that at some point in time, usually every so often, my fellow bloggers seem to revisit this same question. Maybe the answer to this question is easier for some. For example, if I blogged about technology, my direction is pretty clear cut. To talk about what I had for supper last night might loose me a few followers. And gross you out. For some reason - mostly the ones I create inside my head - when I answer that question it gets quite complicated. I originally started blogging on the Friends of Theresa web site so that I could keep friends and family updated in regards to my health. I soon figured out that separating my health from my spiritual life was impossible. So spirituality became a subject. Then I actually started having followers other than my amazing circle of supporters and disease information, common experience and support became topics of interest and reasons to write. Mixed in with all of this is the emotional/psychological benefit of just writing. So quite often I sit here in front of my computer, longing to just write, but somehow wanting to satisfy all of these desires that tug at my heart. If I write about spirituality...well then, I might loose those who have opinions other than mine. This can be a tough one. It's easy to say, "Well...who cares?" Stand up for what you believe in. Well..I care. Not so much what you think of my views, but I care about you. And having an impact, making a difference, somehow making your life just a little bit better for one moment in time means a great deal to me. In the end... like Mother says, you can't always make everyone happy. Believe me, as the mother five daughters and the step-mother of two...I completely understand this concept! Nevertheless, it still causes time for pause - which is exactly what lead me to today.

I have decided that on Fridays I am going to dedicate the blog to divulging interesting little facts about my life. They'll be very random. This give me freedom to break some of my self made constraints. I'll try to mix it up a bit. Some health stuff, some family stuff, some "wow-I-can't-believe-you-just-told-us-that" stuff. Then, if you feel like it, the next part is yours...

I'm gearing up for winter here. It's hard enough, when the weather is good, for me to get out of the house. Winter typically brings with it a bit more "unhealthiness" as well as logistical problems. Actually getting out is just plain painful and difficult. So at the end of Friday Facts of Life, you will have the opportunity to tell me something interesting about YOU! This give me something to do! As well as fill my brain with new and wonderful ideas to write about. have a purpose!!

I'm fully expecting that this idea is going to take some time to catch on. No worry. Whether I hear from you or not, you're still going to hear from me. Because, as mentioned early, it does me good to just write. It's a win/win no matter what! goes...

  I don’t have a belly button.   Yep, you read that one right! If we were sitting in a room together I would let this one ride for a while before I told you why. I’ve done it before and it’s just too much fun to hear people try to figure out how that happens. I have been known to convince small children that I am an alien, but I’m guessing you are all too smart for that one. The simple answer – after too many abdominal surgeries reconstruction gets a little tricky. There comes a time when you just have to say good-bye. Which I did, after the twins were born. That was in 1996. I’d show you a picture, but…well…maybe not.

I have one brother, no sisters. (I do have six sister-in-laws and two brother-in-laws) He lives in Louisiana, outside of New Orleans, with his wife and three young children. He has three adult children that live in Minnesota - near me - where I can love on them all I want! He’s better than a brother, better than a best friend, and grows dearer to me with each passing second of my life. At almost seven feet tall, he’s my larger than life hero.

One of the issues I deal with because of my autoimmune diseases is peripheral neuropathy. The first indication I had of this was numbness in my hands and feet.  Limited to this, it’s no big deal. But most people don’t realize that these are also the same nerves that control muscles and major body organs. People with this type of nerve damage – like me – can have trouble digesting food, heart problems, bladder problems and issues with sweating.  This is the main reason why I get IVIg infusions every two weeks.

When I was a kid, I used to get a wig every year for Christmas.   Believe me, going back through old pictures is nothing short of hilarious...and a little bit embarrassing. But seriously, look at the examples I had to look up to. I was a bouffant in training. The year after this I was a blond.

I’m a painter. I used to paint mostly botanical stuff. Very fine, detailed watercolor.  Since getting sick, I have ventured into the world of acrylic. Big, messy, bold and beautiful. I love it. I’m still learning. This is a picture of my daughter Anna. She is far from black and white, but the picture was fun to do since she has AMAZING eyes.

So, there you have it.'s your turn!

Have a wonderful weekend!!


Wednesday, September 28, 2011

Your Laughter

Taken from the poem “Your Laughter” by Pablo Neruda

Laugh at the night,
at the day, at the moon,
laugh at the twisted
streets of the island,
laugh at the clumsy
boy who loves you,
but when I open
my eyes and close them,
when my steps go,
when my steps return,
deny me bread, air,
light, spring,
but never your laughter
for I would die.

On any given day, these three couples can be found somewhere in our home. As was the case yesterday, minus one half of one. The responsibilities that go along with college and job often times keep Evan in St. Paul these days. We are so proud of him.  

Simply put, I love having them here. I'm thankful for that. It was not always the case when the older ones were at home. When I was caught up in the busy-ness of life. When I worried about things like having the house clean before anyone could visit, or needing to have time to prepare a special meal if someone was to join us, or wanting to look my best if visitors were here. Times are very different now. Most generally, anyone who enters our home knows that I could be stuck in bed for the entire visit. Our bedroom quite often serves as the kitchen, living room or study - a bed full of pets, kids, a husband and me. 

Either way, whether I am bed bound or up and about, one of the things that fills me most is the sound of laughter that echos throughout these walls. Shy flirtatious laughter, the laughter that escapes in between tickles, the loud robust laughter that comes when huddled around YouTube or at the end of a practical joke - there is nothing like it. It bounces off our ceilings, spills milk at the supper table and doubles us up onto the floor. 

There is just so much to be grateful for. I could not have handpicked better boys to be a part of our lives. I watch them. I hear when their words are gentle, I watch the tenderness and respect in their touch and I feel the genuine presence of new love. It is what their days are supposed to be all about. As Anna and Evan are slowly finding out, the responsibility of adulthood comes soon enough and making space for these moments becomes more difficult and most important. 

For me, these six kids bring me more joy and healing than all the medication in the world. I am so glad that I figured out what it means to just "be" in their presence. Minus all the "mom-expectation", I'm truly in it for the experience. Not that we don't still have our moments of parental guidance and general direction giving, but it really is an experience that we all share equally. Learning and loving, giving and taking, laughing at life. 

As Pablo Neruda says in the poem above, "deny me bread, air, light, spring, but never your laughter, for I would die." 

We all need it.   


Thursday, September 22, 2011

When Sadness Slips Under My Door

                       Photo by my Anna May

There have been a few times in my life where I have found myself clinically depressed. I say "found myself" because it's a place you never intend to be, it just kind of sneaks up on you as you are traveling through life. Like getting lost in a bad part of the city. How did I get here

I remember sitting in the office of one of my therapists trying to explain how I felt. I told him I felt as though I was trapped inside a house with really dirty windows and all I could do was sit there and try desperately to see out. Watching life. Everything going on without me. Longing to be a part of it all, but not knowing how to get there. 

I also remember the hopelessness that ached inside of every cell of my body. Intense longing for something different. Longing that went nowhere. Turning and turning in my mind that led to an infinite number of dead ends. 

Mine was a quiet desperation. Most are. 

I've changed a lot from those days. Not that depression doesn't slip under my door now and again, but how I see this uninvited guest has changed dramatically. And the way in which I greet her seems to have significantly impacted her length of stay. Oftentimes transforming the nature of our visit from the fate of hopelessness to the passage of sadness.

It's why I write to you today. These days I have found sadness to be visiting quite a bit, and I'm doing my best to just let her be. My hope is that even in my writing, I may find some level of comfort. It's difficult for me though. Not that I don't allow myself to be honest in all of this blogging business, but my nature is and always has been to be positive. I don't like whining. And I do, even in my most miserable times, honestly find the good. But today, I am allowing myself to share the real. Today, I am tending to my sadness.

About five or so years ago, my father made an announcement to our family. It was Christmas morning and we had all just completed the opening presents frenzy that accompanies a big family with lots of grandchildren. There, standing in the middle of a great-room filled with strewn boxes and mountains of wrapping paper he said this, "We need to be thankful for these days. It won't always be this way . So right now, we need to be very thankful for all that we have." I don't know if anyone else heard those words like I did. It was a brief break in the chaos and it was Christmas morning for Pete's sake. There was fun to be had. But I heard it, and those words have never left me.

By next Christmas, things had indeed changed for our family. My mother began to experience serious health issues that were extremely painful and unexplained. A condition that has been relentless over the past few years and completely debilitating. The recession hit hard, like it has for almost everyone else, causing the loss of jobs, the loss of homes (my parents home in particular - the gathering place for our family) and a tremendous amount of financial hardship, which continues to this day.

In 2009, after completing the best marathon of my life, I became sick and never recovered. The past two years have been full of countless stays in the hospital, hundreds of tests, doctor's appointments, emergency room visits and medications. I have had surgeries that have made things better and surgeries that have almost taken my life.

In the past year Dave's sister was diagnosed with multiple myeloma, his sister-in-law was hospitalized with an unexplained life threatening illness that has left her on oxygen for the rest of her life, my mother had a stroke and most recently, Dave's dad was diagnosed with an inoperable brain tumor that has left him unable to swallow. During this same time my parents had a house fire, we lost a good friend to cancer, and all the usual illnesses and issues that a family with seven children and a chronically ill mom may find themselves dealing with. I will never forget the day we ran into Dave's brother as he brought his wife into the Emergency Room at the hospital. It was one of the rare occasions where we were actually leaving the ER and not being admitted. They were not so lucky. I will also never forget the look in those two brother's eyes as they hugged each other in silence.

These past few months have been difficult, to say the least. At some points there have been three or four family members in the hospital all at the same time. It's an odd practice, prioritizing which family member needs to be seen. I know that for my husband, the exhaustion of it all has a way of melting everything together. Who is where, why are they there, and when was the last time we visited are all items to be straightened out in the elevator. It's surreal.

This week as I watched my own parents struggle with more than their fair share of pain and hardship, as I watched my husband get up at 4:30 each morning and crawl into bed at midnight, trying to fit work and caring for his father into the same 24 hours, as I laid in a hospital bed myself while my own daughter had to go to the emergency room alone, as I found out about a good friends husband suffering a heart attack...
I am so sad.

I hold on to the truth that nothing lasts forever. That there is no light without dark, no good without bad, no joy without sorrow. That the weather changes, it comes and it goes on the breath of Nature and that this is the truth. I know this. I tell this to my family, to my daughters, to myself. With the shallowest of breath, I whisper it to myself.

But I am not hopeless.

When I think back to those days of looking out my clouded window, unable to be a part of the world outside, I find myself in an entirely different space. Sadness is no longer something outside of me, something to be conquered or destroyed - it IS me. It is just as much a part of me as joy, love, compassion, anger, greed... all of these things make up what is me. To destroy my sadness - to somehow annihilate my sadness would be to annihilate part of me. To struggle in this way would mean to do violence towards myself. If I cannot be compassionate towards myself, then how will I ever be able to show compassion towards those whom I love - the very ones for which my sadness arises? What I have learned over all these years is that the best thing I can do for my sadness is to care for it. To care for it just as a mother cares for her child. Just as I would care for one of my daughters. Fully experiencing it, not replacing it with anything else, letting it be.

It's funny how things come to you. As I work through this day, words come and go, meanings arise and are transformed by the movement of my effort. For the past five years I have heard my father's words, "It won't always be this way." as a sort of predestined fate. It's good now, but just you wait.
But this is it! This is exactly it! Oh, how I wish I could have known then what I know now, in this very moment! Dad, you are right! You are SO RIGHT!

It won't always be this way.

This is the truth that I hold on to, that I have been telling my family and my children - the truth that you Dad , YOU have been telling us all along! The truth you need to hear from your very own heart. It won't always be this way. 

This sadness - it's going to be here for a while. And that's okay. We will care for it - each of us. And we will care for each other. And in the end, it's passage will give light to the most beautiful day. A day made so much better by the reflection of the suffering it was born out of - refined and polished by the stones and tears that paved this very journey we are on.

This is my peace.   

Friday, September 16, 2011

September Morning

When summer was still here
I secretly winked at the cold air
An understanding
Between Mother and I
Not ready

My bones still benumbed
Neither warmed nor anointed
They begged
For pardon

The first freeze
Creeps through my bedroom window
Slithers down my green
Making cold paws
And cinnamon roll

Smells good
On days such as

The last door slams
I light the first pumpkin candle
Of the season
And drink my

Wrapped in my sweater
And scarf
We are reconciled
Mother and

She reminds me
Of the beauty

Of the healing
The pause

I lay my worry
Breath in the stillness
Of this moment
Breath out the unease
Within my heart

Where is that recipe
Dutch Apple Pie

Thursday, September 15, 2011

The Freedom In Risk

Feelings are neither good nor bad; they are simply your feelings. “Good” and “bad” are just judgments that you or others impose on your feelings.

Today ~ step out of your comfort zone.

Risk listening to your feelings and accepting them ~  because they already are .

Then… let go .

                  ~ Namaste

Wednesday, September 14, 2011

What To Remember When Walking

                                                                                                                    Photo by David Ralph Johnson
We become truly visible when we give voice to that which is hidden inside of us.
Listen to the call
to your one true

Friday, September 9, 2011

Sleeping in the Forest

Boundary Waters Canoe Area      September 2008

Sleeping in the Forest

I thought the earth remembered me,
she took me back so tenderly,
arranging her dark skirts, her pockets
full of lichens and seeds.
I slept as never before, a stone on the river bed,
nothing between me and the white fire of the stars
but my thoughts, and they floated light as moths
among the branches of the perfect trees.
All night I heard the small kingdoms
breathing around me, the insects,
and the birds who do their work in the darkness.
All night I rose and fell, as if in water,
grappling with a luminous doom. By morning
I had vanished at least a dozen times
into something better.

~ Mary Oliver ~

I love this time of year. I always have. There is something about the crisp air that enhances the smell of nature. As if Fall salts the earth so that everyone can get one last taste before winter. Taste this, she beckons. One last time, before winters blanket covers the pot. 

Camping is something I have had to give up because of my illness. I don't spend much time being sad anymore. I find joy in being a voyeur of my own past. I had these things...and that is the gift I am grateful for. And it's mornings such as these - windows open to the chilly, just-above-frost air, birds migrating in and out of the pines announcing the arrival of the day, smells of wet earth wafting past my warm covers - that remind me of sleeping in the forest. Wrapped in my sheets I acknowledge my place in it all, melting into the comfort it brings. Falling into another place and time. 

Dad, me, Amanda and Dave
One of my favorite ventures into the North included my husband, my father and my beautiful daughter Amanda. We took a week and headed up the the BWCA in early September.

The picture to the left was taken after we had spent the day hiking to one of the high points on the Superior Hiking Trail. It was a marathon experience and we were all very happy to have arrived. Sitting atop our stone balustrade, we slept, ate our lunch and shared holy moments of complete silence. 

We kept slow on the journey. What need was there to rush? At one point, early on in the day, we decided that walking sticks were in order. My father, being the outdoors-man that he is, came prepared for such an activity and had just the tools. Here below you can see Amanda and I whittling away at the branches we all carefully selected along the path. 

The sticks have been with us ever since. 

I think that the best part about being up in the BWCA for me is the absence of thought. Not all thoughts...just certain thoughts. Like the thoughts of time, the thoughts of expectation, the routine thoughts that carry us through our day in an assembly line fashion - keeping us numb on the ride from point A to point B. As if the steward drops a Valium in your morning coffee. 

It is the absence of these thoughts that makes space. It is the absence of these thoughts that gives opportunity - an open door to what is. The here and now, in full force. About fifteen years ago I took a trip to Europe. My first husband, myself and our three young daughters at the time, took off for three weeks and backpacked all throughout Europe. It was a life changing event for me. Each experience seemed magnified a thousand times. Foods, smells, people, architecture, sounds... all in a sort of hyper state in my mind. I came home with an entirely new perspective and it changed many of my priorities for ever. Life had more substance from that point on. Only until recently did I understand why. Being in a territory completely different from anywhere I had ever been, combined with the fact that I could not understand any of the languages being spoken - which meant I could not hear or read any TV or advertising nor could I understand the people that were talking around me - I had opened up space to wholly experience the present moment. A sort of disappearing to actually appear. 

I don't think we do this enough in life. Pema Chödrön, in her book The Places That Scare You, talks about "shaking up the habitual patterns of life". Much of our suffering comes from residing in a place of mistaken happiness. The Buddha called this "mistaking suffering for happiness", like a moth that flies into the flame, destroying ourselves for temporary relief. Going through life numb is temporary relief. 

The tent is no longer there. But I am.
It only takes an open window, or the sound of geese ushering in things to come, or the memories of forest nights gone by, to shake up my life. Even as I sit here typing and reminiscing about my journeys into the woods, I find healing. 

Like the unruffled fog that blanketed our last morning there, I am warm and comfortable in my place. Loss, pain, loneliness, boredom, fear, insecurity...they melt away. And in the end, 

"I had vanished at least a dozen times
into something



Amanda and I, standing on a large rock in the forest.
I love you, Amanda Rose. Thank you, for all that you
have taught me in this life.


Tuesday, September 6, 2011

Life Unfinished

"Life is a process of becoming, a combination of states we have to go through. Where people fail is that they wish to elect a state and remain in it. This is a kind of death."

                                                                                                                                  ~ Anias Nin

My husband is the wisest man I have ever met. Hands down. 
It's a quiet wisdom, humble and real. 
These days and nights that have passed through the last three years of our lives have been anything but easy. And yet, through it all, he remains as constant as the night. True to loving me. 

Often times I read or learn something new, and being fascinated by the simple profundity of philosophy, spirituality and science - I am always eager to share these things with him. It never fails to amaze me, his intrinsic understanding of things. "Guess I never thought of it that way" is what his response is when I try to explain to him that he "gets it" - these concepts that take others a lifetime to comprehend. 

Dave and Buddhism have taught me much about myself and life. Prior to becoming ill, I was very attached to the idea of "attaining". Not so much of things as of ideals, or the way things are suppose to be. Mom, wife, homemaker, artist, runner, writer, business analyst, friend, sister, volunteer... In my mind, all of these titles held a level of importance. A sort of  Platonic philosophy of ideal forms for the modern women. I wore my badge of "I don't know how you do it all" in the most humble of ways. 

Then Lupus, Sjogren's and RA entered into my life. Making low all that I had held so high. 

As I have mentioned many times prior, this has been my greatest blessing. To die before you die

I wish I could say that I'm "there". But I'm not. The Path to the Cessation of  Suffering is exactly that - a path. And sometimes, I get a little "off the path"! This weekend was one of those times. Mixed in with my health taking a nasty spin downward, was the whole chaos of life. It's funny how when your life becomes limited to so many square feet, one can become overly attached to organization (sometimes it's a disordered organization, but it's mine!) and routine. "Who took my tweezers!" is something I have been known to scream from the bathroom only to find out I, myself, had misplaced them! But it happens. 

Monday my husband decided to do some organizing and cleaning of our garage. We are combining shop space with my father. A much welcomed decision! It will be a joy to have him around our house as the kids head back to school. Another human being! 
By Tuesday morning, this is how things looked...

Enter in attachment #1 - how things should be done. I can become quite passive aggressive with this one. "Honey, I'm totally okay if you would like to just keep working all night. It won't bother me..." This is usually met with a comment from my husband about "knocking off early" and being with the family. 


Knowing when to not continue on with the conversation, I turned around quietly and went back in the house. 

So this morning, as Roxi made her way through our home, washing dishes, running the  vacuum and cleaning bathrooms, I perched my chair out in the garage, wrapped up in a blanket and let myself be warmed by the sun...for a little bit.  

This chair is where I sat.
One dog tied to the garage rail to the right, one dog at my feet and a cat on my lap. Beautiful cloudless sky and 71 degrees kissing my face. 

Life is a process.

At the time, I could not remember who originally said this. Or maybe I thought I did. It just came to my mind. Like the butterfly that floated across my face as I sat there. A realization carried on the wings of Nature. 

There is no arriving. Life is living...and living is a score with no end. A composition of melodies and harmonies, ever changing to the tune of all that rises and falls in this world. 

I know this. 

As I look around at our garage, I am reminded of the man that is my husband. And his knowledge of this very thing. Watching him work was my first lesson. Take this canoe for example...

It's been years in the making. It's a cedar strip wood canoe - each piece meticulously cut and glued together. Sanded and coated in polyurethane -  it is a work in progress. Maybe two more months... in project management terms, this could string out to be about a year. This is canoe number two. Canoe number one was made with his father when he was a young man. 

I remember the first real project Dave started after we were married. A deck. It began with a slab of cement, about three feet by three feet. Placed to the left of our garage door. I was hoping for a deck by Fall. Two years later the last steps finally joined the new deck and the old deck to our backyard below. Like the steady ticking of a clock, he worked with patience and a calm persistence. Often times pulling up hours of work to correct something almost invisible to the naked eye. Often times in weather below freezing. 

He's a jack of all trades, and "the master of none", so he says. But I heartily disagree. He's a craftsman, a photographer, a programmer, a project manager, a banjoist...and a simply beautiful human being. His tool kit is modest - what he holds in his mind, a camera, a banjo and a few tools. His impact is great. 

He has fixed many things in this household.
The greatest of these has been the hearts of the four girls that live in our home - mine included. 

Life is a process. 

As I sat there in my chair looking out from the garage, a calmness overcame me. 
No rush.
No rush.
No rush.

If we don't ever "arrive", if life is a process of becoming - then the journey is all we have. 
To me, this brings great relief. It brings beauty to the unfinished. It brings meaning to a life changed by chronic illness. It brings contentment. The undone represents the process - it represents the Being. Alive

I'm pretty sure I'll never be a Buddha. That's the closest thing I can think of to "arriving".
And other than being a mother, and having the name Theresa...sainthood is not likely in the picture.

But I cannot think of a better person to be on this path with - 
than the man that fills these thirty-year-old boots.
The man that cares for me each and every day - and each and every long night.
The man that wants for so little, yet gives so very much.
The man I love.  

Life unfinished
is a beautiful thing.
Thank you David, for never giving up hope.