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.  


Theresa

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 
Peace,
Theresa 

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.

YOU.
YOU.
YOU.
YOU.

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.


Peace,

Theresa





 

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.

Peace,

Theresa





Tuesday, January 26, 2016

This is a repost from a couple of years ago. With recent events in my health making it very difficult for me as of late, I needed to read these words again, for myself.
Maybe you do too. 
Peace...



Sleep never comes very easily for me, but some nights are just worse than others.  I find that if I can keep my mind clear of stories (“What am I going to do? I can’t do this anymore! How will I function tomorrow? I’m never going to get any sleep…”) I do much better.  Letting go of the pressure I put on myself, I often just fall asleep. And then there are nights like last night, where the normal inability to sleep is compounded by an upcoming event that is causing me to be anxious.  Left unchecked, I can create the most miserable of nights!

This morning, after a cup of coffee and some moments of quiet, I have had time to think back on the drama of my sleep…or the lack thereof. In my daily reading, author Mark Nepo talked about the causes of why we hurt ourselves and those around us.  There are obviously many causes, but this quote resonated deeply within me,
“For it is out of fear that we feel the need to isolate ourselves or to control others, and it is often in the act of elevating ourselves that we hurt one another, not to mention ourselves. When not afraid, when in a moment of peace, we feel quite a different need. We feel a sudden requirement to connect and belong to other living things, and it is then in an act of true embrace that we love one another.”
Last night, during the hours in which I should have been sleeping, I spent a lot of time in fear. Fear that created feelings of inadequacy, fear that created the desire to control certain situations in my life, fear that made my heart race and left me in the constant hum of panic.  Fear that created an environment impossible for sleep and eventually gave me a very painful headache.

I can tell you, that in this picture, I was in a complete moment of peace.  Nature does this to me. Whether I am standing in the ocean, walking in the forest or sitting at the edge of a field – I DO feel the sudden requirement to connect and belong, and this connection always creates intense moments of love for the world around me and all those in it.

What I fail to recognize in the moments when my mind is left unchecked is that those opportunities for peace are available to me EVEN within the darkest of nights. Even in those moments of restlessness and pain. Even when events are beyond my control! This morning, after reading the quote, I was finally able to let go of my fear.  And in that letting go, I no longer feel inadequate; I no longer need to control the upcoming circumstances…I no longer feel threatened.  Those that seemed against me now are the recipients of my desire to connect and to love.

How much better this feels! How much relief is mine in the letting go! How much better it is to love than to fear!!

Success will not always be mine. I’m sure that in the zone of half asleep and half awake, I will succumb to the craziness of my fears yet again. But it’s not about perfection, is it? It’s about learning from our mistakes, forgiving and loving. And this we can do at any moment we choose, in any space we find ourselves and with anyone. 

Blessed moments of peace be yours. 


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

Peace,

Theresa

Tuesday, February 17, 2015

Soft Whisperings



I've always considered myself someone who adapts fairly well to change. Part of the reason, I think, is because I get bored. I remember as a young girl, loving to rearrange my bedroom and the feeling of things being different or new when it was all done. Same old stuff, just moved around a bit, made my world exciting. I've never been stuck on routine (sometimes to my detriment). Changing plans on the spur of the moment feels like a fun little shot of "possibility" to me. And the quip, "because that's the way it has always been done" is the biggest motivation for change that there is in my mind...until I got sick. Getting sick not only rocked my foundation, it picked it up and moved it somewhere else.

Maybe change has never been easy for you. Keeping things status quo feels safe, brings comfort. It's one of the reasons why holidays are steeped in tradition. Trees adorned in ornaments from the 1960's, green bean casseroles and the smell of cinnamon in the air all tell us we're home. I have a hutch in our dining room that has combination wood and glass shelves. On those shelves are an assortment of old trinkets, my grandmother's dishes and at least three different varieties of incomplete wine glass sets. Our dining room floor slants directly west by about a quarter of an inch, towards the outside wall. When you walk by the hutch there is a distinct rumbling that waxes to a fevered pitch the closer you get and then wanes upon your departure. It used to drive me crazy. About three years ago I had enough. I emptied the hutch and lined all the shelves with a soft rubbery shelf liner and replaced my menagerie of assorted glassware. It worked! I could walk past the hutch in peace. In fact, I could even dance in the dining room...no rumbling! I was so pleased with my accomplishment. My children, on the other hand, were not. They immediately noticed the difference and preceded to tell me that our house did not sound like "home" anymore! Needless to say, they got used to the change. This one I was not going to give in on.

Last July I wrote a piece entitled When Chronic Illness Makes You World Weary. (If you haven't read it, you may want to do so before continuing on.) A lot has happened since July. A lot of change. It was during that period that my long term disability company was putting me through some very challenging times. I had been under review since the previous March, and had since been under video surveillance by their team of private investigators. To put into words how violating that experience was is impossible for me to do. At some point, I plan on writing about it to you. In fact, I plan on writing about it a lot. It's what I need to do in order to do my part in creating change. But until then, let a general synopsis suffice so that I can get to the heart of the matter.

Long term disability companies (of which Hartford is one of the worst) have one very important goal and that is to make money. I say important, because it should be first and foremost in the minds of those insured by such companies. Despite what you read in their propaganda, they are not committed to fulfilling their promise of payment throughout the life of your disability. And, in fact, the longer one is disabled, the higher the bar becomes in regards to disability criteria. I joke, although there is truth to this, that at the two year mark if you can lick envelopes from a hospital bed, you are fit to work. Despite the validation of twelve medical specialists and recognition from Social Security Disability, Hartford has denied me my disability claim. Just like that.

The roller coaster that ensued was quite a ride. In the end, I ended up with two very renowned attorneys from different parts of the United States, both willing to fight for me. Both feeling confident in my ability to not only win an appeal, but if the case would have ended up in court, it would have leaned strongly in my favor. But something odd happened along the way. Something very strange and very unexpected. Something I definitely did not plan on.

Change.

And that change was in me.

My case file had arrived - all 2000 pages of it, including video footage. The attorney I had decided to go with had an unexpected death in the family and because it was around Christmas, there was a significant amount of "wait time"before we could get back together. Wait time during which I was officially and legally no longer considered disabled by long term disability. And more importantly, disabled by The Hartford, who had, for the past five years, been harassing me relentlessly. Constantly requiring unjustified paperwork to be filled out by myself and my doctors, showing up at my home for recorded interviews and consequently following me around, unbeknown to me.

It was during this time period that I began to notice a change. Not just the obvious changes, like being able to walk out to my mailbox or stop for lunch on the way home from a doctor's appointment without wondering who was watching me - which is what the video footage was actually of (I guess sitting at Noodles & Co. with your family is not allowed if one is truly sick!). But a more important, more subtle change. I was beginning to feel what it was like to let go of an identity, of my identity as Disabled Person. And this letting go was quite different than the letting go that came along with getting sick.

But this is what I find so interesting. When I first became sick I really struggled with who I was. So much had been taken from me. So much that I strongly identified with, that is. My "type A - marathon running - career women - super mom - outdoors person" image was no longer looking back at me in the mirror. It had been replaced by a very tired, sick looking women I hardly recognized. And she wasn't going to go away.

When I spent the month waiting for my attorney to get back from her family emergency, what I came to realize was that I was gradually letting go of yet another identity and it was the best feeling I have had since becoming sick.

I was letting go of being a Disabled Person.

It doesn't matter what your identity is. It's shaky ground at best. The minute we begin to identify as something, we risk losing part of ourselves when it's gone. What I did not also realize is that the minute we begin to identify as something, we lesson who we truly are and what our full potential is.

As Pema Chodron writes,
"Our identity, which seems so reliable, is in fact very fluid, very dynamic....Your sense of yourself - who you think you are at the relative level - is a very restricted version of who you truly are. But the good news is that you can use your direct experience - who you seem to be a this very moment of time - the sound you are hearing, the smell you are smelling, the pain or comfort you are feeling right now - by being fully present to your experience, you contact the unlimited openness of your being." 
In letting go of my identity as a Disabled Person, I was beginning to feel the enormous expanse of the unlimited possibility which is me.

I'm still sick. Best I can tell, that's not going to change much. My letting go of Disabled Person is not going to miraculously make me well (although I do not underestimate the possibility). And my days are still full of pain. But it has a significant effect on the amount I suffer. I did not realize how limited my thinking had become. Partly because of my fear that Hartford was lurking around every corner and that my actions would be misinterpreted. That's just one of the many ugly facts needing some serious federal legislative changes. But I take full responsibility for taking on an identity and then making sure I stayed well within the confines of it's expectations.

It's funny what started to happen during that month. All of a sudden my world just opened up. Instead of giving into what I can't do, I began to think about options. Ways around things. Modifications. Situations that seemed like "all or nothing" softened. Possibilities started seeping in around the edges and under the doors of my mind. I began to contact the unlimited openness of my being.


How is your identity limiting you? What rumblings are you not listening to? We do all these wonderful things with our lives, and we keep doing them because we believe they somehow reflect who we are or what we think we are suppose to be. I would urge you to find quiet space in your life to listen to the soft whisperings of your heart. So often we are a reflection of an identity and not our authentic selves. By letting go of those identities, if just for a moment, we can peer ever so slightly into our own unlimited openness. It took a couple of really nasty situations that were beyond my control to cause me to take a second, third, fourth... look. I hope that by reading these words you "get it" a bit quicker than I did.

In the end, I chose not to fight The Hartford. I consider myself blessed and extremely fortunate to even have the ability to entertain that option. Some (including my attorney) may think that's just about the dumbest thing I could ever do. Me, well, I'm just learning how to paint again. And it's absolutely wonderful.

Peace,




Related Posts Plugin for WordPress, Blogger...