Monday, August 4, 2014

Wild Abandon

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

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

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

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

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

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

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

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



Tweedles -- that's me said...

When we read your words, we can feel all the emotions that you are feeling,,,and we are left wordless.
Its so wrong what you have gone through with your whole life being turned upside down,,, spindling out of control,, and then to have this happen to you.
You have tried so hard to make a life for yourself,,, and find the moments where you feel you can smile through the pain. You should not feel guilty.
Someone is trying to rob you of life and joy,,, and its so wrong.
tweedles mommie

Theresa said...

Thank you so much for your words Tweedles Mommie. Yes, it does at times, feel like "they" are trying to take something away from me. The implications are large and the fear of not being able to take care of my family can be quite a strong emotion. Being sick limits our options when life throws these huge curve balls. It's not like loosing a job and thinking, "okay, now I have to do the work of going out and finding a new job!" But this is one thing I do know to be true. That no matter what, we will be okay. I will be okay. Whether things remain the same, I choose to fight a new battle or I choose to let go...I will be okay. That, my dear friend, is the wonderful - AMAZING - fact that resides in each and every one of us.
Thank you so much for always being there and listening with such a soft ear.

kazzie40 said...

I have just found your blog after seeing it on Facebook and it had made me realise am not alone . You have said thinks exactly as I feel. About Good days ect I feel quilty if have a good day and am seen at the shops ect which is one day a week.but nobody sees me on bad days as I don't go out .am writing this from bed

Theresa said...

Kazzie40, you are NOT alone. You are not alone just like I am not alone. And even though we cannot be physically present in the lives of those we find suffering our same conditions, we can find great comfort in knowing in our hearts and minds that truly, there are others out there that get it. Others that know the isolation, the toll this takes on our self-esteem, the judgment of others and of ourselves on our situation, the constant second guessing combined with moments of desperation that we cannot take one more minute of the pain and's a roller coaster that makes us doubt and question even ourselves. But as you read these words - know with all your heat that there are others. Give yourself a break from all the expectation and just lay there in your bed knowing this. YOU ARE OKAY just as you are. In your good moments and in your bad moments. Just like I am.

I am so very glad you found my blog. I look forward to getting to know you better!!


lehona said...

Bless you. . . this is difficult and you are brave to write about it. I too have several autoimmune diseases and deal with uncertainty. I was so devastated that I couldn't be alone when I received a 10 page letter detailing how I could return to full time work after 9 years of disability. Fortunately I have resources, a husband that works and was able to hire a lawyer after months of looking for one in my state. ERISA governs disability insurance and robs people of rights. This video helped me to understand what I was up against:

Theresa said...

Thank you so much for the video Lehona!! I have been trying to collect good information "just in case" and this video is extremely helpful. I did some research about the 'discretionary clause" and the law just changed in 20 states as of this month..
Thankfully Minnesota is one of them, which is where I get my LTD from. I am just so happy you posted!! Thank you again!! Theresa