Showing posts with label Vulnerability. Show all posts
Showing posts with label Vulnerability. Show all posts

Tuesday, June 14, 2016

What Can I Do?

The Orlando shooting happened this past Sunday morning. As was the case of many on social media, my facebook feed was inundated not only with posts of sadness at the world's recent events, but it was full with aggression. The combination of this horrible and tragic event, on top of all that is going on in the political world right now, spewed anger and hatred all over a feed that is generally speckled with posts from artists, spirituality websites, funny cat videos and summer vacations. They simply went away. Or some facebook algorithm pushed them so deep that even my unusually high amount of surfing today didn’t reach them. Understandably so.

The first time in my history with facebook I had to unfriend someone. Someone I hold dear. Someone I would rather keep in contact with. Someone, who like me, has suffered great illness and understands what it means to still be walking on this planet. This was very hard for me, for a number of reasons. Mostly because I care about this person, but also because I value the opinions of people who don’t think like me. I truly do. But this friend became so angry, so full of hatred, their language so hurtful that the conversation was just shut down. It no longer retained the basic characteristics of “an informal exchange of ideas”. There simply was no exchange. One view, full of anger and hatred, limited in fact and gross in overgeneralization - with an unwillingness to hear or respect the views of others. I had blocked this person from showing up in my newsfeed a while back, but today my attention was brought to something this person had said recently. Upon reading the words written, I decided that as difficult as it was, I had to do something. My passive “hoping” that the situation would resolve itself or that I could maintain the relationship by avoiding this person’s behavior was no longer a solution...if it ever was.

Feeling not well enough to really do anything physical today, I spent an unusual amount of time paging through my facebook newsfeed, surfing news articles and listening to online news radio. I purposefully read and listened to as much as I could from both sides of "the story”, trying not to get involved in sensationalism on either end (which is basically impossible, but I gave it my best shot). The Orlando news, intertwined with all the political agendas on both sides, made it intensely difficult. Beyond my ideas of why this happened or how it happened or what the solution is, lies a profound sadness and the heavy feeling of helplessness. Over and over and over again, the question in my head... What can I do? What can I do? What can I do ? This sense that the world has gotten so out of control left me feeling like the only thing I truly can change is me . Overwhelmed with the bigger picture, yet longing desperately to do something. What can I do ?...

Then, I stumble upon a video shared on facebook of Stephen Colbert’s reaction to the Orlando shooting. These are the words he ended on,

It's easy, it's almost tempting to be paralyzed by such a monstrously hateful act, to despair, and say, 'That's the way the world is now.' Well, I don't know what to do, but I do know that despair is a victory for hate. Hate wants us to be too weak to change anything. ... Love is not despair. Love makes us strong. Love gives us the courage to act. Love gives us hope that change is possible. Love allows us to change the script. So love your country, love your family, love the families and the victims and the people of Orlando but let's remember that love is a verb. And to love means to do something .

And again, as I surfed aimlessly, I found myself watching a video of the Dalai Lama at the Youth World Peace Conference. In his opening remarks he offers a few moments of silence for a time of prayer and then says,

Although some are quite skeptical about the effects of prayer, it has to come through action. Serious action, continuously, despite difficulties and a lot of obstacles, we cannot lose our determination, our courage. And on top of that, some prayer is ok, no harm. Without action, it is just prayer.

Love, in action, is compassion. Compassion, by definition, is “a feeling of deep sympathy and sorrow for another who is stricken by misfortune, accompanied by a strong desire to alleviate that suffering.” What can I do? What can I do? What can I do ?

There was a lot hate and anger and finger pointing and blaming and judging on facebook today. So much so that by tonight I felt like I needed to sage the house just to help myself let go of it all. It hung heavy on the humidity that came rolling in with the storms. Heavy and dark. I understand these reactions. Because that is exactly what they are - reactions. And quite often, they come fast and they come heated. But one post, one very well written and brave reaction to an article describing the complicated history of the shooter, dared to show compassion for the shooter. She wrote, “While I utterly, utterly condemn his atrocious actions, I also believe we must extend some compassion to him for his own distress.” Unimaginable? Maybe. Impossible? I don’t believe so. And it really made me think.

After sitting here today, reading all the news articles and surfing through all the posts, I found myself so angry, so full of what feels like hatred to me. A justified hatred. A hatred that comes easy in light of such tragedy. A hatred that comes easy when listening to racism and sexism and rape and murder and lying and all that fills our news. We’ve had enough. And nothing seems sweeter in light of fear, than justified hatred and anger. Yet nothing is further from the solution.

Compassion must have the final word. And compassion does not mean agreeing with everyone. And it surely does not mean letting people get by with things that are harmful. Just as I had to “unfriend” someone very important to me, there are times when difficult things have to be done (to speak on an extremely simplified level) or said. Compassion is not easy. For one thing, it threatens our ego. In order to have compassion you have to put yourself in someone else’s shoes. Let go of what you know. Move toward the pain of the world, beyond bias, beyond prejudice and fixed opinions and open your heart to people - those we like and more importantly, those we don’t like. Compassion counteracts our tendency to stay stuck in our way of thinking and counteracts our resistance to change. Instead of acting or reacting with aggression when we are provoked, endlessly perpetuating the cycle of aggression, we trust that we can interact with others from a place of inquisitiveness, calm and caring, without feeling threatened.

I don’t claim to know the answers to all of life’s difficult questions these days. But this I do know, the answer to even the smallest of these is not hatred . It never will be. And some of the most daring work we can ever do is to challenge our own way of thinking - our fixed ideas, the labels we are so invested in, our conventional ways of experiencing things, our opinions of right and wrong. It’s not until we do this that we can move beyond bias and prejudice and actually care for people, actually make a difference. With all that I feel helpless about, this I can do.  

This I can do .  


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, January 28, 2016

You Get What You Give

Photo by David Ralph Johnson
We don't want to believe it. But it's true. We don't want to believe it because life is hard. It's hard and it's generally not fair. So when someone throws out a platitude like, "You get what you give", we believe it with cautious hesitation at best. Or we don't believe it at all, because we try so damn hard and the bad stuff just keeps on happening. So why try at all?

It doesn't matter who you are or what your particular situation is, we have all had this feeling at some point in our lives. It could be a relationship issue, it could be a career issue, it could be a financial issue, it could be a health issue, it could be a self-esteem issue...however many unfortunate circumstances there are in the world, there are just as many people who can't seem to get a break from them, no matter how hard they try. In fact, some people seem to have no luck at all.

I'm not hear to disagree with the fact that life isn't fair. Because it isn't. Stuff just happens. What I'm here to write about is what we do with that unfair stuff. How do we process it and in the end, how do we react to it. Because, quite frankly, sometimes we forget. Sometimes I forget.

I'm on year seven of fighting Lupus, Sjogren's, RA and a host of other health problems that popped up and tacked on along the way. The beginning was extremely tough. Life threatening tough. The middle was full of ups and downs with lessons learned in between. Currently, I'm not in a good space health-wise at all. I had a flare last September that threw my body into a tailspin and I am fighting desperately to climb back up. Many complications, old and new. Some neurological symptoms that are quite frightening and we are still trying to figure out. Which means lots of trips to the hospital and lots of tests, many which are not very pleasant. And if you know anything about lupus, stress of any kind only exacerbates the problem.

How have I been handling this recent phase? Not very well at all. I feel as though this is probably the lowest I have ever been. And my doctors know it because each one of them has asked me if I think about suicide. Even the doctors in my most recent hospitalization questioned me. I just can't stop crying.

Let me stop the worrying here. I never, never think about suicide. Ever.

Would it be wrong for me to think about suicide. Well, it wouldn't be helpful...but I don't believe it would be wrong. It's a perfectly normal feeling like joy and sadness and worry and fear and all the rest. It just demands a very different action on the part of myself and of those around me. But I do think about not trying. I have a phrase that will get stuck in my head in times like these and it's, "I can't do this anymore." I find that when I'm crying, these are the words that I repeat over and over and over again. Sometimes out loud when my sweet husband holds me in his arms. This is how I felt when I went into the hospital last week. This is how I felt when I went to the hospital yesterday.

And then this happened...

I was a bit worried about my state of mental health the last time I visited my doctors. I knew I needed to kind of "get things under control". Not in a fake way. In a good way. For me and for them. Too much emotion can distract both me and the doctors from the real issues. And I was confident this needed to be about my diseases and not my mental health. So I decided to be as positive as I could and as pleasant as I could to everyone I came into contact with. It was odd, in a way. I felt a little bit like I had lost control of everything and the only thing I had left was to be kind. A bit like giving up in a good way. Maybe that doesn't make sense, but it did to me. So I just smiled.

At each one of my doctor appointments I was met with exceptionally thoughtful nurses. Each one of my doctors spent an unusually extended amount of time with me in which they were not only incredibly compassionate, but went overboard in accommodating me and making themselves available to me when I left their offices (giving me phone numbers and emails...) I even had a doctor walk me down the hall, take my coat and pull the chair out for me when I sat down to schedule my next appointment.

I had an hour or so to spare in between appointments so I visited the hospital gift shop. In there I had the most lovely conversation with three women. Found a great sweater that I bought for myself, tried it on and had everyone in the shop complimenting me. I left the store with the biggest smile on my face only to be greeted in the hallway by someone offering me free coffee - which I needed desperately. I walked down the hallway and toward the pharmacy, which is where I met this man...

Meet Thanh-Tran.

I first saw him as I was walking to get on the elevator. I could hear all this commotion down the hallway and I looked to make sure everything was okay. Noticing that people were all laughing and smiling, I proceeded into the elevator. Just as the doors were about to close, I saw a shadow coming toward me so I put my hand in between the doors to prevent them from closing. As they opened back up, there he stood. About a foot from me with the absolute hugest grin on his face. He was about to step in when he realized the elevator was full. Without hesitation, he put his fingers up to his lips and blew me a kiss and waved good-bye. Without hesitation, I blew him a kiss back and the doors closed. There I stood, my back to about five other people, wondering if anyone else noticed I just blew a kiss to a perfect stranger! All I could do was smile.

I got off the elevator, walked to the pharmacy and found my place in line. Within seconds the man in the bright red beret, red scarf and the American flag tie had entered the room. No, let me clarify. His high pitched, sing-songy, full of life and laughter, Vietnamese infused voice entered the room about ten seconds before he did. Not one person remained unaffected. He shook hands, gave kisses, did little dances, raised his arms in celebration, jiggled his tie and repeated, "America intelligent! Good people! Good doctors! Good life!" he pointed out those he knew across the room with a "Hey! Long time no see!", and those he didn't with a "Hey! You beautiful today!" and walked right over to me.

I got out of line and the two of us sat down together. I had no idea what I was doing.

Within moments I was talking to Thanh-Tran, Vietnam veteran, highly decorated, Vietnam lawyer ranked number one in a class of 3000, married to a retired nurse, father of four, grandfather of seventeen, disseminator of all things positive. In between his little bits of wisdom and snippets of life history, he would would turn his hand palm side up, gently place it under my chin and randomly interject, "You so beautiful. You so intelligent. You so lovely my daughter" and then pick up where he left off. Just like that.

I learned about his love for our country. I learned about his life in Vietnam. I learned about the importance of staying active every day (which was accompanied by a dance befitting some sort of Irish jig). I learned about how important it is to have good friends. I learned about how we have to be thankful for good doctors. I learned about what the pins and metals meant that decorated the front of his beret. I saw pictures of when he was young and living in Vietnam. I saw a picture of his wife and of the little plastic document that seemed to verify it all.

I wanted desperately to capture this moment so I asked him if I could take his picture. He immediately responded with, "You take picture. You. Me." I pulled my phone out of my bag, stood up next to this tiny little man and tried...yes tried to take our picture. Just when I would be ready to take the picture, he would turn his face away from the camera and kiss me on the cheek.

And just like that... He was gone.

But never from my heart. This man changed my world. In the blink of an eye, in the breath of a laugh, in the touch of a hand...he changed my world.

He taught me what I had seemed to forget. "You get what you give." And no one knows this more than Thanh-Tran. You see, you have to put it out there friends. When life isn't fair, when you absolutely need it most, you have to put it out there. You can't lock yourself in that little room of hopelessness and despair. You have to give up the fight. Yes, I said give up the fight. You have to realize you are not in control. Keeping the illusion of control only only keeps us armed and protected and or defenses up. We have to let go. Be vulnerable. Be authentic. And give.

If you're feeling hopeless, give hope to someone. If you're feeling scared, give comfort to someone. If you're feeling sad, give happiness to someone. If you're not feeling loved, love someone. If you're feeling angry, be kind to someone. If you're feeling frustrated, be patient with some one. If you're feeling too tired to care, give compassion to someone. Do something. No matter how small. Give it all up and be human with someone. Relate. Understand. Be vulnerable. You see, you get what you give - and you get it when you need it most.

I believe Thanh-Tran needed a kiss when that elevator started to close. And you know what. I gave it to him. Without thinking. Without hesitation, I blew a perfect stranger
a kiss.



Monday, August 4, 2014

Wild Abandon

Today, when responding to the recent "flurry" of events associated with Toni Bernhard's publishing of my piece in her Psychology Today column, I used the terms "wild abandon" when describing how I felt when I originally wrote the article. Having just received notice (after months of being harassed) that my long term disability company had been taking video surveillance of me, I was frantically spinning in circles with energy. And it wasn't good energy. Feelings of anger, fear, violation, shame, panic, judgement, humiliation, mortification...were so intense I found it difficult to even breathe. It was the kind of news that if not for a nearby chair, would simply drop you to your knees. 

It's been almost a month now since that letter came in the mail; about twenty-five days and just as many emotions. In those first days, one minute I would think I have the whole equanimity thing figured out (if it turns out good, I'm okay and if it turns out bad, I'm okay...) and the next I would feel paralyzed by the stories spiraling in my head. Many nights completely unable to sleep. "How can they truly know how sick I am and how this disease affects me if they only video tape me outside?? I only go outside on good days! How do they know by looking at me how many times I have thrown up or if I have been unable to leave the bathroom due to unexpected diarrhea? How do you see cognitive disfunction or migraine on a video screen? Where are they every evening when I feel so ill that taking my medication and falling asleep is my only reprieve? Yes, I drove myself to that doctor appointment, but what about the thirty or more that I was unable to drive myself to this past winter? Maybe I shouldn't drive anymore. Maybe I shouldn't get the mail. Maybe I shouldn't water my flowers on a good day. Maybe I shouldn't go out to eat with my family..." It's been a crazy roller-coaster ride and it takes a tremendous amount of mental work to make it stop. 

But this is what I have figured out about myself throughout this whole ordeal thus far. And believe me, I'm still a work in progress. 

1. I don't believe I randomly picked the words "wild abandon" out of thin air (like I felt I did) this morning when describing my frantic writing episode after receiving that letter. It was wild abandon. There were no rules when I wrote. In fact, when I did it, I had actually planned on using it as a journaling exercise to try and rid myself of the physical side effects I was feeling from the panic I was experiencing. Definitely wild. No one's looking kind of wild. A complete lack of inhibition or restraint kind of wild. 

2. If you look in the dictionary under abandon, the first definition reads something like this, "to give up completely (a course of action, a practice, or a way of thinking), discontinue". That is exactly what I needed. It's what my body was begging for. For that horrible sensation to be gone. I didn't want it any more. And for some reason, I felt that if I just let my fingertips go on the keyboard I could somehow find a way to release things. To let it go. To give it up. I didn't care what I was typing or who was going to potentially read it or if I would somehow let my viewers down. I had simply had enough

3. The second definition, although similar to the first, says, "to cease to support, take interest in or look after; desert. Leave empty or uninhabited, without intending to return". To me, this means that not only am I giving up something, I'm not planning on taking it back. And by doing so, at least in my situation, I am leaving this "thing" empty and definitely uninhabited by me. I am putting my foot down and refusing to allow this situation to take up any more space within me - or I within it! 

4. The third definition is where I am at now. It's the very thing I talked to my health psychologist about during our time together today. For me, it's almost a byproduct of the first two; "to allow oneself to indulge in (a desire or impulse)". The minute I hit the "Post" button on my blog account there began an immediate change in my internal circumstances. At that very moment I was done being scared. (Not that fear hasn't returned at times, but with much, much less ferocity!) This was the first moment I truly felt the presence of equanimity. Once I let go, once I no longer let these "things"(fear, anger, my long term disability insurance, whatever is making me miserable) have power over me, or in me, or in my future plans... my world felt bigger. It wasn't really a change in my circumstances, but more a shift in how I was looking at them. I allowed myself to indulge in a desire or impulse. And my desire was to let this all go. Quite a task for a control junkie like me!

The picture at the top of this post is that of an abandon house in Kensett, Iowa. It stands (barely) just down the road from the Izaak Walton League where my grandfather was the president for many years. I was so fortunate to be there recently for an old-time family reunion, which is when this picture was taken by my husband. Years ago, when I was healthier, I walked down the railroad track about a mile or so and carefully made my way through the old front door, which now no longer resides on it's hinges. If you've ever done such a thing, there's a feeling that goes along with it. That feeling can range anywhere from a sort of "spookiness" to a grand sense of days gone by. It's fun to look at light switches and wallpaper and envision what it used to be like way back when. But for me, the minute I walk into an old abandoned house I have this intense feeling of Holiness. Like I'm stepping on sacred ground. Outside the door, old abandoned house. Inside the door...a home. Where the rooms and walls are filled with stories of life and death and everything in between. Just like those stories and the people that lived them turned this old abandoned house into a home, so, too, do our stories turn you and I from flesh and bone into compassionate, spirit-filled beings, beautiful and holy.


Tuesday, October 9, 2012

A Journey Into The Unknown

Recently, my husband ended a 90 day journey to the top of the Main Street stairway in Stillwater, Minnesota. Funny, as I type that, it sounds like it took him 90 days to get to the top! Actually, the journey was a daily one. Every day as he drove through Stillwater he stopped and climbed to the top of the stairs to take a picture. This 90 day mission took him 143 days. What began as a whim on a cold February morning ended as something much greater - something unknown, yet powerfully significant. He says, "It's a great luxury to do things that don't make sense."

There is a white building on the left side of the street. It towers above all the rest and slopes without reason on the back corner. On the backside of this building there is a pair of windows.

Inside those windows lives a beautiful women. 
She is my daughter, Anna.

This is her first apartment on her own. No roommates. No live-in boyfriend. No help from Mom and Dad. This picture was taken the day she moved in. Exhausted from the days events, she is graceful, elegant and filled with passion for her life. I painted the picture of her that you see on the wall behind. The eyes of a then 13 year old. Piercing. Asking their questions of me. Hoping, trusting. 

This picture was taken on that very same day. Low lighting and movement producing a haunting reflection on life. These are how days seem sometime. Fleeting, ghost-like apparitions. We try to hold on, as if grasping at smoke. But the Universe has a different plan.

In the heart of Los Angeles, right next to Beverly Hills, there is an area called Sherman Oaks. This eclectic town is approximately 1,975 miles from where I live. In this town lives a piece of my heart. Sometimes a piece so large that its absence takes away my breath. Sometimes a piece so large that I scarcely can hold the joy that it contains.

This is my daughter, Amanda. 

She and Daniel moved out to California four years ago with an old car, a few suitcases and a roll of toilet paper. They had nothing else...except a dream. A hope. And trust.

Last month I took my first trip to visit Amanda and Daniel. It's crazy what can happen in four years. When I think of all that has happened to me in the past four years - getting sick, fighting for my life, becoming disabled, learning and accepting - and compare it to all that has happened in her life...

I realize that none of us really knows how this crazy journey will go. Not one of us. Yet, we keep walking. We keep loving. We put ourselves out there again and again - being vulnerable - because the risk of losing does not even compare to the gift of being loved. So we chance it. Again and again. When the whole world thinks we're crazy and everyone else gives up. We just keep believing. Because some day...some day.

Some day you take this picture and you realize that love is bigger than you could have ever imagined
and it's worth every tear and every hope and every fear. And that 2000 miles aint nothin'. 

And then there were three, where there once was 
only two. 

This is my oldest daughter Aleela and her husband Keith and the newest addition to our family, Adella Marie. 

Being the oldest isn't easy. It makes you responsible. It makes you determined. Charting unknown territories,  with an impetuous invincibility. Refined, lovely, compassionate. 

They brought this miracle into the world and I can't help but be thrown backwards into the past each time I look into her deep blue eyes. I see a little girl in a pink dress, with a pink bow in her hair, standing on a stump in the yard singing to her hearts content. Unmoved by the world that surrounds her. Freely creating masterpieces of make-believe, joy flinging off the tip of a wand. Pure, care-free and open. 

Oh, my beautiful Adella Marie. What will you become? Where will you go, my precious, precious baby girl. If you are one millionth of what your mama is, you will be rich with life. 

I have no idea what steps you will take. But this I know - I refuse to live a life of fear 
when it comes to this world. And I will work with all that I am 
to show you the hope
and the beauty
and the joy
of this amazing 

In 1987 I was 21 years old. After the birth of my second daughter, Amanda, I was told it would not be a good idea to have more children. Two operations later - Anna May was born in 1993. Three seemed like a good number. A safe number, all things considered. 

1996 I was 30 years old when I became pregnant with twins. Life will do that to you. Throw you that curve ball, when you're not looking. When you're not paying attention. It will just hit you square between the eyes 
with the most amazing

Meet Emma Jane and Sara Jane.
They were a two-for-one deal
I cannot imagine life without them.  

They are the last two at home. They have known a life very different from their other sisters, although the sinew of sisterhood is more powerful than one can ever imagine. I see it between these two and it is the force that binds them all together, connecting them, holding them tightly through every storm. I see a beautiful trust in the knowing that no matter what, no matter what - they are never alone.

Often times when I talk of Emma and Sara people will say, "Oh, a surprise " But isn't everything in life a surprise? We are lucky that most often during our day things happen to go as planned. Gravity still pulls in the right direction, the alarm clock goes off when it's suppose to, the milk is still in the fridge... But it's all up for grabs, really. Yet we trust.

On September 28th, 2006, Judge Eric J. Lundell granted me a judgement of divorce from the father of these five daughters. He was my first true love. I met him at the age of 16 and married him at the age of 18. We had so many dreams. And for 22 years we watched most of those dreams come true. We also experienced the painful end of others. There are very few things in this life that shake your foundation like divorce, all horribly painful, all life changing.

In the middle of my writing this morning an old friend from work called to just say hi. She herself has experienced one of these "things" when she lost her husband to cancer a couple of years ago. She talked of how Fall made her reflective. How in that reflection there was sometimes a bit of sadness. She talked of the colors and how the leaves fall off the trees and things begin to shut down for winter, and how that brought about feelings of death. But only a "little sadness" she said, because like the new relationship she now finds herself in, and like the flowers that eventually burst forth in Spring, "things must come to an end so that others may begin."

It is our ability as human beings to take tragedy, in it's finest hour, and turn it toward reclamation. A holy redemption. The freedom to begin again.

I don't even know where to begin when it comes to my "second chance" at life. I think I've only had a dozen or so of them! But if it would not have been for the miracle of love and forgiveness, I would never have had the chance to be the step-mother of Casey and Maddie Johnson.

Being a step-mom is not something you grow up thinking about. In fact, in my day, the only vision of step-mom's were that of Lady Tremaine from Cinderella and the Queen from Snow White...not really images I like to emulate. It's tender, risky business. Hearts are at stake. The hearts of children, of mothers and of fathers. You tread this area like walking through a room full of the dark. Slowly and softly.

There are simply no words to describe how blessed I am in this regard. There's a knowing that comes before this kind of love.It's what makes love all the richer. It's like sunshine after the rain. Like spring-time after a long winter. It's what keeps us loving again and again.

I started writing this morning because I was missing my daughters. It's tough sometimes, having kids live so far away and being too sick to travel. When I feel this way I have a tendency to start telling myself stories that are not very helpful. So I thought that maybe if I just started writing, I might work things out. Kind of like the journey that my husband was on - the 90 day journey that I wrote about at the beginning of this article. The one that went from 90 days to 143 days. He didn't really know what was going to become of his mission, he just knew he needed to be on it.

It's when I try to make sense of it all, when I try to ground my feet in something that really isn't there, that I struggle. My husband is so right. It is a great luxury to do things that don't make sense. Isn't that what loving is all about. If you think about it - most days it doesn't make good sense. But we do it anyway. We love, we trust, we hope...and we love again.We venture into the unknown.

No one has taught this to me more than my daughters.


Tuesday, May 8, 2012

What You Don't See

This is my current Facebook profile picture. 

May 2, 2012

This was my Facebook profile picture on March 22, 2012.

...and January 7, 2012

...and December 4, 2011

...and October 19, 2011.


This is me today. In fact, this is me almost every day.

Minus the make up,
minus the wonders of Adobe Photoshop,
any pretense.

May is lupus Awareness Month. If you didn't know me, or have lupus yourself, or actually know someone with lupus, you most likely would not even know this small piece of trivia. You might not even know what lupus is. Four years ago, before getting sick, I sure didn't.

Each day this month various lupus Facebook pages have been posting interesting and informative snippets of information to help bring awareness to people in regards to lupus. Most of the information I already know, but every now and then, something shows up that I was not aware of and I am reminded of how important these communities are to me. 

But, if I had to guess, the average person on Facebook probably does not "Like" these particular pages. In fact, I don't imagine my friends and family even do. So if one does not "Like" a particular page, then one does not receive the "informative snippets of information" that is sends out every day. Which got me thinking...

What do I want you to know? What do I want you to really know

In fact, what if I only had one thing I could write about today? What would it be? 

It would be this...

Lupus can be a very invisible illness. Because of the chronic nature of the disease, those who have lupus must learn how to manage with the illness on a daily basis, every days a week, 365 days a year...every single day of their life. Mothers continue to care for their children, fathers go to work, students go to school, people mow their lawns, cook their meals, shovel their walks, go to social events...all the while struggling with issues such as severe joint and muscle pain, nausea, vomiting, headaches, painful skin conditions, vision problems, kidney failure, cognitive difficulties... the list goes on. And most days, if you were to look at any one of these people you would have no idea the suffering they are enduring. 

I've been very fortunate in my life. I have a supportive family and a beautiful circle of friends that refuse NOT to know the real me. Not even Photoshop pulls the wool over their eyes, and I simply cannot imagine it any other way. But there are many out there who travel this journey completely alone. I hear stories every day of partners and spouses that are unable to fulfill their roles as caretakers. I hear stories of comments spoken by well meaning friends and acquaintances that absolutely break my heart. A simple "you don't look sick" can pierce like a knife when you're standing there suffering silently. Even the tone of it seems to imply you must not be sick then. Yet, "You look nice" is such a lovely comment to get and does nothing to imply any conclusions about whether or not I am sick.   

It took a lot for me to post that last picture. Not out of any sort of vanity, heaven knows I'm way beyond that whole concept! But because just like everyone else struggling with this disease every day of their life, I work really hard to....yep, you guessed it...not look sick.  And therein lies the crux. Like my mother always said, "You're damned if you do and damned if you don't!"

So what advice do I have to give? What snippet could I leave you with today that might actually make a difference? I think it would be this. And this pertains to anyone you meet in your life. 

We must always do our best to not make any assumptions. 

Because we just never know. The person standing before you could be struggling with depression, they could be victim of domestic violence or they could be suffering silently from a disease such as lupus. We just never know. Assuming anything because someone looks happy or dresses well or just happens to be out for the night is an assumption we must not make.  

Looking at our friends and loved ones through the eyes of compassion, trusting that their journey is exactly that - their journey and loving with our whole hearts is what we can do. 

I recently received a post on my Facebook wall that said this,

The average person tells 4 lies a day or 1460 a year; 

 a total of 87,600 by the age of 60. 
And the most common lie is...
I'm fine.

Who knows if this is true. I actually think the numbers should be much higher, especially if we take into consideration all the lies we tell ourselves! Either way, this does not make the job of caretaker or friend very easy. I will be the first to say that I could do much better at being honest and letting others know when I am sick. Just remember that those living with chronic illness are managing the best they can each day with something that will never go away. Actually admitting you don't feel well every time you don't feel well...well, even WE get tired of hearing about it!

If you would like more information on lupus and how you can help bring awareness to your community, please visit The Lupus Foundation of America.


Friday, February 24, 2012

Clare's Well...spoken from the heart.

                                                                  Self Portrait                       Clare's Well, February 2012

Two weeks ago today, I was on the second day of my visit to Clare's Well. I had very good intentions of writing about my trip as soon as I returned, but to be honest, it's been more difficult than I had anticipated. Have you ever had an experience so moving that you hesitate to even open your mouth about it? The mere thought of trying to grasp all that it encompasses is completely overwhelming, and the only honorable thing to do seems to be silence. I flipped back and forth between writing a summation of my time in Annnandale and simply posting all three hundred of my pictures with the hope that you would just "get it". But neither seemed right. Most importantly...I wanted what came from all of this to be honest. It seemed like that was gift given over the course of the four days. This accounting should be authentic.

I'll warn you - this is going to be long. It is also going to be very real. I apologize right now, if in my attempt to let you into one of the most personal parts of me, I in any way offend - I am truly sorry. This is just me, in all of my humanness, sifting through and plucking away at the pieces of what makes up just one simple women in a very big and beautiful world.

I've decided to type word for word, the journal entries I made while on this trip. No changes, no omissions. I can guarantee you, that if I would have any idea that my journaling would ultimately end up on this blog...well, I probably would not have journalled at all! It just seems, that after reading over things, it's the most honest thing to do. My hope? My hope is that in my struggle, you find your struggle. In my pain, you find your pain. In my joy, you find your joy. In my beauty, you find your beauty. And in the end, you come to realize your own grace, your own purity, your own sacredness...
The Holiness  within.

A few pictures to begin...
Painting and sketching supplies.
The new porch recently added on to the hermitage - heated floor and all!
This is also where the compost toilet is located,  through the closed door to the right. 
The House of Clare. The smallest of the three hermitages, this holds a special place in my heart.
I was happy to be here again.
Many hours spent sitting in this space. 
A small kitchen for snacks. Meals are served up at the farm house.
Wonderfully cooked, homemade and organic - there is nothing like the food at Clare's Well.
Jeana, my dearest friend and only the second person that I have ever shared this space with.
She came for  lunch the first day. A perfect way to begin my stay.
Flowers brought by Jeana.

2/10/12    Clare’s Well
The day before I got here I saw an eagle. I was laying down in the living room. Feeling very sick from not taking my medication – medication that my mail order pharmacy failed to deliver. It’s my chemo. This “glitch” made me feel very sick as well as unsure as to if my trip would even be possible. As I lay there, half asleep, contemplating this and certain issues with my family – I open my eyes to the speck of an eagle in the corner of the window. The sun illuminating its head. In all the universe – my speck of a window.
Having my usual first day. Maybe a bit more difficult because I am sick. Having a hard time adjusting. Missing Aleela so much. Even writing the words makes me cry. Maybe I just need to cry. Missing Dave. Missing the girls. Missing the dogs, the cat. NOT usually the case. The fatigue, sinus pressure, headache making it difficult to concentrate. Hard to write. Hard to envision being creative. So that makes me sad.
Supper soon. Went out for a walk around 4:00 or so. Very cold and windy. Below zero windchill. Brought Daniel’s snowpants. Toasy warm. There were men working on the footbridge replacing old boards. Easier job when the creek is frozen. I wasn’t afraid of the woods. Maybe because the winter makes them transparent. Maybe because the men were there. Took pictures. Then the camera froze up. That’s okay, fingers not working. Wanted to walk out across the lake but too chicken. Some things never change. Maybe I’ll look at the pictures before I go. Oh, as I was napping today I realized I forgot the Ipad. I really wanted the computer to write, but gave it up for Dave. Now I don’t even have the Ipad. I’m thinking it was not meant to be – as “panicky” as it made me – a bit angry even. The hand it is! Maybe this trip was supposed to be about me.
The view from my hermitage. 
Walking into the woods. 
The footbridge leading into the woods. 
The curve and beauty of age.
The House of Clare to the left of the barn.
Walking back to the House of  Clare...home. 

Back from supper. Fire's out. COLD. Took about 20 minutes to get it going again. I love the smell of wood burning. I miss that smell in the house. Supper: chicken and dumplings, potatoes, carrots, celery. Yum. Beets, broccoli salad (with sunflower seeds) homemade bread and applebutter, brownies and ice cream. Met Ellen – neighbor of 60 years. Sad. Farmers wife. Husband is in memory care. She’s moving to an apartment to be closer to him. Nice lady – typical old farmers wife. Very active in her church. Jan is not here this week. She’s on “retreat”. Her neice  - mother of 4 ages 16 to 6 – single – just had an aortic aneurism. It does not sound good. There is so much pain in this world. So much pain.
I’m thinking that tonight will end early. Sinuses are really bad, teeth hurt, head hurts, body aches, neck is just not moving. Pajamas, bed, read…sleep.  Tomorrow is a new day. 

Slept broken, but well. Went to bed at 9pm and was up every 2-3 hours. Had to completely restart the fire around 3. Had one of those “real” dreams were I could not move. Thought there was a cat in bed with me. Maybe Jenni. The room looked completely “as is”. Just could not get my arm over to the lamp.
Got out of bed at 8. Can barely move. Body moaning. Added wood to the fire. Made Coffee. Swept. Started the “sacred dirt” on fire. Cleansed the room. So simple, it burned just right. Re-arranged my alter so that it felt right. Lit the candle. Read:
“I have just three things to teach: 
Simplicity, patience, compassion. 
These are your greatest treasures. 
Simple in actions and in thoughts, you return to the Source of all Being.” Lau-tzu

Havan Samagri..."sacred dirt."
A lifetime of treasures. Stones filled with the the oldest souls of this earth...

A few old favorites and a few "in progress".
Homemade granola, fruit, yogurt and organic coffee...heaven.

 I truly am drawn more and more to the simple. I long for it. Ache really. So much so that I have to be careful it does not keep me in the future. Away from what I have right now. I am trying to learn what it means to take that longing and give release to it in the present moment. I don’t have to wait. It’s difficult with a family. There are so many other lives to consider. Lau capitalized the word Being. When I saw the eagle before I came I felt a very strong affirmation of the Source. I told Dave on the ride here that religion is mankind’s attempt at finding solid ground. Seems true for all cultures. “We” all feel the Source. The Being. The Source of ALL Being. In our humanity we try desperately to “pin it down”. That’s our tendency. I don’t believe that’s our nature. Tendencies often times come out of fear or ignorance. I don’t believe the Source is to be understood. In our limitedness, it can only be experienced. Accepted for what is. We do not have to label it. When we label something we begin to think we know the truth of it. “This is an Apple.” Done. “I’m not sure what this is…” Open! To all possibilities. Like Tolle says, when we think we know the truth, we stop looking. We would not know the truth if it showed up at our own front door.
I want to live a life present in the moment and open to all possibilities. Simple in actions and thoughts. 
Today will be about being simple. 

Home sweet home.
A friendly hello!

Some scientists are led to the undeniable truth that God exists.
Some scientists are led to the undeniable truth that God does not exist.
The truth is to be found in both scientists. 

Looking in.

A copy of a painting/poem I made for Sister Agnes before she died.
Sunday Morning. Beautiful, beautiful sunrise. Only a breath of wind. It will be a good day. Slept better last night. Only got up once or twice , but was sleeping very soundly. No fear. Pain started about 3am. Very difficult early morning. Could not get comfortable. Meds and heating pad would not even touch it. I think my massage yesterday caused some trouble. Treggor may not be my thing…or at least my joints don’t think so. I liked it, for the most part.
I let the fire go out in the night. I stoked it up WAY too much before bed and had to get up a few times and open the window. Fell asleep with it wide open – below zero. Crazy. Woke up to close it and it still was pretty warm in here.

Homemade poppy seed bread...a delightful addition!
Out of bed at 7am. Made fire. Swept. Made bed. Made coffee. Read my 4 affirmations. First I lit the candle and spread sacred dirt smoke all over the room. First time this felt completely natural. Without thought or doubt. I felt connected to Tanuj and Moon – to all humanity. Even the Catholics…ha! Found a new book up at the house – earth Prayers. Talked about how our prayer to the Sun (or whatever) is not about what it does to the Sun, but what it does to me. I can feel myself moving away from the guilt and responsibility of religion. In the middle of my prayers I had to poop. In the past, I would have felt guilty about that. Not doing it right…again! Not having the strength to force myself in some sort of “martyr-like” fashion. There is no martyrdom in Buddhist philosophy/thought. Loving self is the greatest/first good. I felt that this morning. Taking care of my needs was part of my meditation. I felt as if I was taking care of one of my children. That the interruption and returning was ALL GOOD.  Hard to explain. 
I hope I remember.

Me...completely and utterly content. 

I listened to Jack Kornfield and another lady last night. Tapes by Sounds True from up at the house (these are just the greatest nuns ever). I really need to listen over and over again. They are so good. But one of the things that resonated with me was this idea of naming things when they arrive. It finally meant something to me. If I had any advice to give, it would be – Just try it! I’ve heard this many times before, but never really practiced it until recently. It’s quite amazing how just naming something helps it to pass. “That’s an itch.” “That’s my back hurting.” “That’s uncomfortableness.” “That’s hunger.” It’s crazy! Like when you were a kid and you tell your mom that you hurt your knee. If she does not acknowledge it you feel like it’s going to hurt forever. You sit alone weeping about how you think you’re gonna die. But if she says, “Oh, I bet that really hurt!” and then kisses it…well then, off you run! All better! This is how we care for ourselves. Like a child.
Simply amazing.

The back  side of the wellness center. 
Inside warms a host of chickens, a not so sociable cat and a  momma goat.
Ah ha! There are TWO of YOU!
Inside the front porch of the main house. That's as far as they get!

“We are the only living thing that upon going one direction, wishes we had gone another.” I have to think about this one for a bit.

Sitting on my front step in the sunshine, listening to the birds. They are just chirping and calling like crazy! Spring is so close. I ran inside to get my journal as thoughts just keep pouring into my mind.
Last night at supper we read these beautiful “Grace” cards. All very feminine. Written from the perspective of women, but also as Mother/Creator. I felt sorry for the lone husband. Wondered if it made him feel at all like he was a “visitor” in this women’s world here at the Well. Ran into the same couple in the Wellness Center this morning. Had the same thought. Now, sitting here, I see them walking up the hill together, towards Francis, where they are staying. I wondered again – does he feel uncomfortable in this women space. And then I thought of Carol – making the statement that we need to “get the men here”. So I then wondered if they would change anything to make it more “man friendly”??? AND THEN  - I was blown over with this feeling of “All of Time”  - and the patriarchal foundation of almost every culture. And I am filled with love and admiration and pride…and sadness for women. How they have survived. Continued to be the carriers of faith and tradition and ritual throughout generations despite our exclusion. Things are changing slowly. Adding another, more beautiful layer to the earth takes time.
I don’t think anything should be different from how it is right now – constantly changing. I think this direction is good. Where the Well is at in this moment is exactly where it should be.  The farmer ladies just arrived back from Mass. 

Pictures from inside the wellness center. A warm and inviting, very peaceful place to sit for reflection.

Looking out from inside the sauna. Of course, it was NOT on!
Lupus and heat  are not a good match!
Sister Agnes, you are dearly missed.

Sunday evening meal in my hermitage. Leftovers never tasted so good. 
I decided to make some very small bookmarks and  hide them
in some of the books in the House of Clare.
This one is maybe twice the size of a postage stamp.

Monday. Final Day.
“I don’t need another mother in my head.” Moving away, being distracted, naming it, moving back, being distracted, naming it, moving back, being distracted, acting…not acting…moving back, All without guilt.  Because being true to what IS is what is most Holy. Going with the flow of Nature, of the Universe, of all that IS is the right thing to do.
Can you imagine what the world would look like if the nuthatch looked at the woodpecker and “gave it a shot”. Everyone has their nature – what they do, what they are meant to do – because of who they are as individuals. “Humankind is the only living being that goes in one direction and wishes it had gone another.” We must be like the nuthatch. Waiting its turn, hopping down the tree from branch to branch, grabbing its seed and flying off. Or, the woodpecker, who pecks his way through life. Never wishing, wanting, hoping, trying to be the nuthatch.
You know what your true nature is because it is always there with you. Uncover it! Peel off the layers of fear, doubt, longing, inadequacy…find what kind of bird you are and just BE.  What clothes do I like? What food do I like? What does my art look like? What words do I write? What books do I read? What places do I want to visit? How do I like to spend my time… Be careful though – seeing our true nature is difficult. Always question why.
The morning is floating by like clouds on a Fall day. When I try to hold them, they disappear.

I wanted to dedicate some of my quiet time to Sara, one of my twins. So I decided to paint her.
Still quite unfinished, I decided to give a "sneak peek"!
There are very few times that my hands work well enough to do this type of work,
but lucky for me - I found a few hours where things seemed to cooperate. 
The view from my porch.
My chair looking out the porch windows.
Fun work. The rules when painting in this book are...NO RULES - MISTAKES WELCOME
My very first day I was greeted by a hawk flying from right to left over the lake.

My very last day I was greeted by a hawk flying from left to right over the lake.

A snapshot of my journal.
This is the tree that held the bird feeder - which was right outside my front window.
I quite often sketch things so I don't forget. 
Moving slowly. Paint. Pack. Paint. Pack. Slowly put jewelry back on. Wedding ring. Friend’s bracelet. Medical ID bracelet. (last)
The hermitage is clean, journal written in…4:05. Dave will be here at 5 for supper up at the house. Front porch painting is done for now.
It’s been a good visit.

A reminder of the Holiness within. 

If you've made it all the way to the end...thank you for sharing in the wanderings of my heart. Without knowing really what to do, I was sure of one thing - I wanted you to be a part of it. With every thought, with every frame of beauty, with every awakened moment - I longed for your knowing of these things. So much so, that at times I felt like weeping for the hope of it. There is so much suffering in this world - for sure. But I promise you this...there is infinite beauty, and it originates in you.