Photo Credit, David Ralph Johnson

“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. "

“ 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 

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

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,

My sunflowers!

Gratitude is much friendlier visitor!

Today I opened my door and walked out...

Green surrounded me.

Bee-ing okay with things just as they are.

Thankful for another sunrise.

Laughing at the volunteer maple tree in my flower garden.

Enjoying the unconditional love of my four legged friend.

Peace,