Showing posts with label Compassion. Show all posts
Showing posts with label Compassion. 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, February 25, 2016

Rest And Be Thankful... An Update

Photo by David Ralph Johnson
"Rest and be thankful."   ~William Wadsworth

I have so much to be thankful for these days. Even in the midst of all that is going on with me health-wise, there is never a moment that I am not thankful for all that I have. On two separate occasions now, my neurologist as taken the time to ask me how I am doing mentally. It's an odd moment when a doctor gets quiet and asks you if you ever think about harming yourself, if you are ready to "give up". A moment packed full of emotion - alarm, embarrassment, defensiveness, worry, confusion.. But even with all of that going on, there is a clear and very focused "me" that says, "No, it's simply not an option." I'm thankful for that. I'm thankful that even in my darkest moments I long for life. I long for my family and my friends. I long to live my days, my moments with the man that I love with all of my heart. These things keep me moving forward. These are the things I take rest in.

I've not yet taken the time to really let people know what has been going on with me the past few months. I've eluded to it in my blog, on facebook and in messages to friends, but I've not really been too public about the nitty gritty. Not so much because I don't want people to know. More because we (myself and my medical team) really have not known. And until things become clear, I would rather not worry people. But, as is usual with these situations, it seems to be dragging on so I thought this would be a good time to give a bit of an update.

Last September, after tapering for months, I finally made it "off" prednisone. The first time since becoming ill in 2009. It was a horrible tapering with an even worse outcome. But I was determined to see what happened. I was determined to see if my body could figure things out on it's own. I wanted to know if I could "recover". Quite often when going off a medication, there is a period where things get worse before they get better. I wanted to know if this would be the case with steroids. Well, for me, it was not. I ended up creating an inflammation process, a kind of domino effect, where all of my tendons and muscles were affected. Wherever there was a tendon...I had tendonitis. I could barely walk. Then it crept into my muscle tissue, causing some rather serious conditions, mainly in my left shoulder. Of which I have had various treatments that have been unsuccessful.

Then it began to affect me neurologically. My doctors immediately put me on higher doses of chemo and steroids. For those of you who understand the medication regimen, my cocktail consists of Cellcept, Methotrexate, Hydroxycholorquine, Prednisone and a host of other medications for symptomatic treatment. A total of 37 pills a day and weekly injections.

These symptoms are quite frightening. I began having weakness and numbness in both arms and legs. It then moved into my torso and my face. This was also accompanied by extreme nerve pain all over, but especially in my legs. Nerve pain that would immediately wake me up out of a deep sleep or prevent me from sleeping altogether. Some days better than others. Some days difficult to even stand upright. This, combined with all the tendon and muscle pain, the fatigue, the headaches, the GI problems - well, it became overwhelming. That's what led to the hospitalization in January. It is also what kicked off all the extensive testing, of which I am still doing.

The number one suspect - MS. It's not the first time they have suspected this. Over the years I have been tested and the results have been inconclusive. I have had one "bad" spinal tap and two "good", although they have not been completely clean. I have five lesions on my brain that have remained unchanged over the years. My neurological exams have declined and the nerve conduction tests have slightly decreased, with some new issues. But nothing that conclusively says that MS is the culprit.

So this is where I am at right now. My team of doctors are working together to decided who should take the lead at this point. If there is no new diagnosis to be added, then my neurologist does not want to be the one deciding which medication I should be on. They all agree that something needs to change. The problem with that is that any "new" medication is going to be quite risky for me. It's a step up (or down, depending on how you look at it) on the scale of possible negative side effects and complications. They're just more dangerous to my already compromised immune system.

I'm still in a holding pattern. Things got a bit delayed the past two weeks when my rheumatologist got ill and was out for two weeks. My team has been good to communicate with me every few days, for that I am extremely thankful. It makes a huge difference to know I'm not lost on the radar. There have also been a number of other things that have kept me going during this time.


And...then there is YOU. My family and friends. Those near and those far who have continually checked up on me. Those of you who have "liked" my posts on facebook, commented on my artwork, BOUGHT my artwork, sent me messages and cards, stopped by for visits and basically supported me every step of the way. For me, oftentimes captive to these four walls, this outpouring of kindness has literally been what brings me through each day.

I am so thankful for you. I hope you know that. I hope you know how important you are to me and how much I cherish your friendship and care of me. I was completely bewildered (and overjoyed) by your response to my need for a new bed. Within less than a month, my dream became a reality because of you. And let me tell you, I could write another thousand words about how helpful this new bed is. Immediately I noticed a change. Immediately I was able to get more hours of restful sleep. Immediately I noticed a difference in my waking hours because of that sleep. All because of the compassion of family and friends. You purchased my artwork and in turn, you gave me rest. What a beautiful thing. Truly, truly beautiful and I thank you with all of my heart.

This has been a tough one, that's for sure. And where I go from here is a somewhat worrisome for me. But this I know - I can do anything with my family and friends beside me. To really know that you are there.

This I take rest in.




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.



Sunday, July 19, 2015

Just Another Everyday Hero

When I got sick back in 2008, there were a lot of things I didn’t know. I think we all are willing to say, on any given day, “Ya, I don’t know a lot of things.” I think what we are not so willing to admit, is that quite often, learning those “things” does not come easy. There’s the fun stuff we learn…how to build something new, how to make a new recipe, how to get somewhere we have never been. We know these things will be challenging, but because we make the choice to learn them - the challenge is sweet. But then there’s the stuff that doesn’t come so easy. The stuff we learn about ourselves and about the world that comes out of suffering, out of pain or even out of tragedy. If we stay the course long enough, if we see that anger and resentment and bitterness are but a passing guest, we find ourselves on another side of things. It’s the space where tragedy and loss blossom into something far greater. Beyond that which grasps to destroy us. Where walls fall down like silk off a wooden rail. Where vulnerability meets honestly and finds rest in the soft pillow of love. 
To list all that I have learned since 2008 - especially for the purpose of this small post - would be crazy. And I’m not even quite sure where to begin with the point I’m even trying to make right now because the magnitude of it seems too big for words. I write it and re-write it and each time it just seems like another Hallmark greeting card or sappy Facebook poster. But I’ll do it anyway; partly because without Facebook I wouldn’t even be able to say what I’m going to say. And also because without Facebook it would not reach even one tenth of the people that I hope it reaches. 
This is the big thing that I have learned. The life changer. The energy behind my life and the “thing” that I now base all that I believe in. It motivates me. It makes me compassionate. It changes my political view. I softens me. Ready? 
This world is filled - FILLED - bursting at the seams and overflowing - with absolutely beautiful people. Wonderful, creative, loving, humorous, compassionate, colorful, broken, lovely people. Who wake up every single day hoping for the exact same thing I do. To be loved. To be healthy. To be cared about and to be given the chance to care for others. They, like me, want to be celebrated, want to listened to, what to share their dreams and hopes and fears and to laugh the laughter of our common Joy. To find what binds us in the depths of our hearts - to know the commonality of our deepest fears and sadness and to run wild with our shared story of resilience, of courage…of hope. We long for these things. No matter our age, our race, our sexuality, our social status or the land on which we place our bare feet each morning. 
Since becoming sick I have gotten to know people from all over the world, thanks to the “world wide” web. From every state in our Nation to countries all over the world. I regularly communicate with people in Russia, in the Scandinavian countries, all throughout Europe, Asia and Africa. Some of these relationships have absolutely changed my life for the better. Have some of them not turned out so well? Yep, of course. Realizing all the good in the world does not somehow make all the bad go away. And it surely does not make you naive. It makes you compassionate…if you’re lucky enough to see it through. 
So why write about this today? To be honest, I contemplated not. Mainly because there are so many of “you” out there. You who have imprinted on my heart so significantly that you are part of my very fiber. I see your faces in all that I do and say. I hear your voice in my head, even though many of you have never even spoken to me - our relationships carried on the written word. And maybe I should just do this more often. Point you out. Show the world these everyday heroes in my life. Some of you are so quiet, so humble, so unassuming I fear offending you with my own willingness to be “public”. Yet, in a world so eager to make us all enemies, I want desperately to let them know about you. 
Philip Buttà , you are one such person in my life. Today I choose to celebrate you. I’m hoping you’re “okay” with this since you have been working so hard to promote your new CD and the causes you so passionately believe in. Phil came into my life just like many other of you - through the internet. To this day I’m not sure if it was I that was on his blog or he that was on mine! Either way, we met through words and it’s been words that have bound us together ever since. I’m pretty sure that if I actually meet Phil in person some day he’s going to look quite odd to me. I have this vision of a man whose heart is too big for his chest. That the enormity of his love for people and for the four legged of this world is just so colossal that it is impossible to hold within the frame of a normal man. I can honestly say, I have never known a person like him. And it’s this very passion that drives the words and the music behind his new CD. The minute he released it I could hardly wait to buy it. Separating the story from the man is impossible. And knowing some of Phil’s story as well as knowing what I know about his talent for music made this a complete no brainer for me. The fact that by purchasing it I also feeds a rescue horse a bale of hay…well, that not only is a perk, where Phil is concerned - it just makes sense. 
Thank you Phil for being my friend. Thank you for who you are, for saying it like it is, for taking risk and being vulnerable, for being one of those voices in my head that makes me a better person. Thank you for all of your inspiration, for being “out there” with your creativity and for sharing in the ups and downs of being an artist - as well as telling me when to get off my butt and get back to work. Thank you for keeping tabs on me when I’m sick, for giving me the dream of someday traveling to New York with Dave and surprising you at one of your gigs and for making my mouth water with your pictures of home baked bread! You are one of the heroes in my life and I am so privileged and honored to share your CD with my world. May we all have just a little bit of what you have in your heart. My, what a wonderful world it would be.

Please consider supporting Phil and his campaign for Lucky Orphans Horse Rescue



Monday, November 26, 2012

When The Pain Is Yours


I don't like going to the vet...I never have. Today was no different.

This is Oliver. Oliver showed up on our deck sometime in September, or maybe it was August, I'm not really sure. It was sometime near the end of the summer because we were already trying to come to some decision as to what to do with her if she was still "hanging around" when the weather turned cold. She never left.

Yes, Oliver is a she. We found this out a little over two weeks ago when we had to take her to the vet. We had somehow gracefully slid into the understanding that she was here to stay. And now she was sick. Or so it seemed. Excessive drinking and salivating led us to suspect she had some sort of kidney issue. Two hundred and fifty dollars later we were assured she was just a thirsty, salivating, perfectly healthy two year old female cat.  I had exceeded my pet budget for the month, so booster shots and spaying would come later.

I have to admit, this was not a real popular idea with myself nor my husband. Two dogs and a cat already seem overly sufficient. Adding another pet, that will most likely be with us for the next 13 years, was not the direction we wanted to be heading pet-wise. But it's a difficult spot to be in. You don't euthanize an animal that just seems sick. So you figure out the most inexpensive way to find out what might be wrong and go from there. Getting the "all okay" meant bringing the cat back home. I think it was at that point that I let Oliver into my heart.

Two weeks passed and mental adjustments had been made by all. Oliver was officially part of the Johnson/Buresh clan. Which truly was not much of an inconvenience to our daily activities because Oliver prefers to be outside. Out of 24 hours, I would guess that Oliver maybe spends 4 of those indoors. The rest are spent stalking and hunting the various mice and birds that frequent our bird feeders and surrounding woods. A real hunter, she's quite the antithesis to our Jeni, who prefers longs naps in the sun and full bowls of Indoor Formula Cat Chow.

The middle of last week, after spending a full day out and about, Oliver came in holding her front leg up. Unable to put any pressure on it, she hobbled to her usual spot in the spare bedroom and stayed in for the night. Three days later both legs on one side were not working properly. Four days later she walked in a completely arched back position and meowed in pain as she moved. This weekend she could barely crawl to her food. The progression, heart breaking to watch.

Our appointment was for 8:30, the first appointment of the day, the one you get when you call at 7:01 am.  If I could have figured out anything else to be doing on this beautiful morning I would have. Just getting her into the crate brought me to tears. I had already told the girls that we could not afford any more medical testing. That this is a stray cat and our budget only goes so far. That she might not come home with me... Tough talk last night, but now it's just me and Oliver and my heart is breaking. She has the absolute most beautiful green eyes you could ever imagine and at that moment they were pleading with me to leave her alone. Trusting me.

The vet was very good. The sign in the exam room where we sat read "Every pet deserves a good vet, and we HAVE good vets". Yes, they do. He lifted the top of the crate off so Oliver would not have to be moved.   Ever so carefully he examined her as I held her head in my hands, stroking her face and eyes. In my heart I hoped it comforted her, calmed her. I could feel her body quiver with fear, but she never moved. This once active, inquisitive cat now lay motionless looking directly into my eyes.

It was at that point that I lost it. Apologizing for my tears, I just kept saying, "I'm sorry, I'm really sick and I think for some reason this is especially difficult for me." He was a sweet man, a little unsure as to what to do with me, he simply nodded and said, "It's okay." It took everything in me not to fall to pieces in that exam room. As I sit here and type these words, I'm still not really sure of all that fills this painful space. If I could pick some words out of thin air they might be helplessness, frustration, sadness, anger, fear...a most intense longing for things to be different. Why can't some things just be different.  

In a few weeks my daughter Anna is going to have major surgery to repair a birth defect that only now, at the age of 19, has made itself evident. She will have her jaw broken in multiple locations, upper and lower, with extensive work on her temporomandibular joint and chin. We have been planning for this surgery, which was suppose to happen in August, for over a year now. I have the most intense longing for things to be different. Why can't some things just be different. 

My bedroom window
I sat down to write this piece instead of doing my usual Cyber Monday shopping because I had to. When I put my fingers to the keyboard I had absolutely no idea what I was going to write about. I just knew that the only way to find out was to begin. As I looked up out of my window two bald eagles flew between my window and the pines in my yard. Beautiful, crisp white heads, wings spread, one right in front of the other. Eagles have always been important in my life, representing balance, intuition and spirituality - their presence bringing assurance that the divine is present. A validation of the path I am on, the direction I am going.

A reminder of the Holy.   A reminder to let go.

Oliver came back home with me today. We are fairly certain that something is wrong with her spine. Neurologically, things look good, yet she is in a significant amount of pain and is unable to move because of it. Everything else checks out okay. As to what is wrong with her spine, we don't really know. I have enough pain and anti-inflammation medication to get us through three days. If she doesn't improve by then, well, I'm not sure what we can do next. I'm not really sure about a lot of things in this life. But this I do know - that it can be really painful at times. And that the biggest of lessons can come from the smallest of creatures. And that life is precious. All life. And we can talk big about things, like "not spending money on an animal" and "I know what I'd do" and "If it were my cat I'd take it out back and..." But when it's your life, or your heart, or your health, or your kids, or your pets...well, that big talk gets pretty small when the pain is yours.

I decided to go check on Oliver one last time in order to give you the most current update. I got down on all fours to crawl quietly to the spot between the table and the patio doors where she lay in order to take a picture. This is what I saw in that very moment. She lifted her head and gave me the most peaceful look, almost a smile if you look closely enough. As if to say, things will be okay...just as they are.


Wednesday, September 26, 2012

Four Years...

This picture was taken a little over a year ago – August to be exact. I had just undergone what was supposed to be a very straight forward cardiac ablation. But because of the complexity of my illnesses and all of the medications I am on, nothing, absolutely nothing is ever straight forward. This particular surgery ended with the largest hematoma in my abdomen that my doctors at the University of Minnesota had ever seen. It was serious business and the recovery took months.

I have had countless situations in the past four years that have begun as simple procedures or administrations of medication and have ended with complex and life threatening circumstances. Too many to count and enough so, that visits to the emergency room bring a tremendous amount of fear to both myself and my family.

I’ve only seen this picture once before. I stumbled upon it, not knowing that it had been taken. The first time I could not even look at it. Not because of my own situation, but because of my daughter Emma, who is sitting next to me in the photo.  This time, in my searching through photos this morning for something to post, I let myself linger a bit. A year has passed since then, and there have been other situations much like this one, where my family has been by my side.  I cannot imagine what they go through.

Four years I have been sick now. Four years they have never left my side. Four years of hospitalizations, emergency room visits, life threatening reactions, coding - four years of chronic illness. Four years, day in and day out, twenty-four hours a day, seven days a week, three hundred and sixty-five days a year – my illness has impacted their life. I will never fully comprehend the affect this has had on their lives. Just looking at the face of my daughter in this picture makes my heart so heavy I begin to weep.

Yet, not once has my husband or any of our seven daughters ever complained. No once have I witnessed their frustration or anger. Not once have I ever heard bitterness or any complaint in regards to the chaos this has brought into our lives. Countless vacations have been canceled, plans have been changed, meals have been disrupted, work and school has been missed – sacrifice after sacrifice has been made on my behalf. At times my illness consumes all that is in its path and nothing shakes their unconditional love for me. Nothing.

I cannot imagine a love so great. I cannot fathom the depth and breadth of such a thing. I can only be present in its grace. That is all I can do. Lay myself open to this gift and simply receive. And then, with all that I have and all that I am – love in return.

To my family,
I love you. I love you beyond anything I could ever imagine.

Thank you for loving me so well. 

         Mom xxoo  

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.