I am so much more than answers to questions….

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I have just finished filling out the soul-crushing paperwork for disability. I started the process the end of August and am now into the next phase and finally finished filling out 2 different sets of paperwork that were about 8 pages each at 1:30 last Friday morning. I walked out, barefoot, down my long driveway and across the road and put it in the box with the flag up in the moonlight. It felt appropriate. I was filled with moonlight madness, anxiety, and a flood of tears as I finished answering the questions that left me feeling about half an inch high.

The one I had trouble with was the one that required long detailed answers about aspects of my days and life that they absolutely have to have to determine that I am indeed eligible for disability, and I understand that. What I was not prepared for were the questions that had to do with competency. Can you brush your teeth? Can you tie your shoes? Well yes, I can do both of those and I can take care of myself on all of the basic levels but what shocked me were all the things that I cannot do, or do as one is expected to to be a functioning member of society. I knew I was odd. I know I am disabled in ways that don’t allow me to work outside the home, and frankly, I cannot sustain work, not in a way I can count on, inside the home. By the time I got through with the paperwork I was flattened, depressed, and frankly I felt useless and somewhat imbecilic.

But, you say, you have had nearly 2 million visits to this blog (I was shocked to see over a million here in the last couple of days, and over 700,000 at the original location for Maitri’s Heart, www.maitrisheart.blogspot.com.) Ah, yes, but it has been 7 years, and while I have worked hard to open my heart and my life, to share honestly and openly with others, no matter how difficult it was for me, because I truly believed I could help others if I was honest about my life, my struggles, my joys, my deep fears, and glorious loves, and yes, I am a very intelligent woman, but I am also all of the things I have written about these 7 years — Bi polar, agoraphobic, with PTSD, a serious anxiety disorder, clinical depression that really waves it’s banners high when the rest kicks their heels up, yes, I am an intelligent woman, but I am crippled in ways that you do not see. And yet…

The very things that cripple my everyday life allow me intuitive highs and a powerful depth that pierces through the heart of things in a way others dare not tread. And in many ways they are wise. Some of the deepest, most powerful, most responded to posts I have written have put me to bed for a few days… but I wouldn’t change a thing. The Black Box (The brain.) is something so mysterious the greatest scientists will not unravel all of it’s mysteries in this lifetime. Mentally I can, at times, leap tall buildings with a single bound, and on the other side of that I am hiding under a pile of quilts clinging to my pugs.

Some people would rather not be around me.

Some people are afraid of me.

Some people are fascinated by me.

I am hanging on by my fingernails, flying by the seat of my pants … but … somehow or another … it is alright.

I can say this because I am 60 years old with 40+ years of therapy under my belt.

I can say this because I am on 5 medications that help me get through each day.

I can tell you that I love, I love so much, and so big, and I am blessed to have many people who love me, but if you approach me and try to get close to me when I am not ready for it, I will run for my life. I want to give so much but I have to do it on my own lopsided, lumpy, bumpy, inside out and upside down terms. I get so afraid. Too many people took to much when I was too little, too many people expected too much and were angry at me all the time for not being the perfect child as I grew. I upset and disappointed people as an adult because I couldn’t be what they wanted me to be, and finally I left the world and found a little place where I could live with animals and garden and read and write as I am able, sometimes soaring, sometimes laying words out in a line and nailing them down so I don’t lose them.

“Write down everything you do from the time you get up in the morning until the time you go to bed.”

Almost everything I wrote had to do with taking care of animals.

As I wrote it I felt the floor shift at an odd angle and I didn’t know how to describe that on the form but I was sliding off the edge of the world.

Later they asked if I had hobbies and I didn’t know what to put. You see I take everything far too seriously to consider any of the things I do hobbies, but I tried to see it like I thought they wanted me to.

I knit, I crochet, I garden.

Such a vast oversimplification.

There was no question to which I could respond and tell them who I really am. They don’t want to know that I love so big it makes a full moon look small and that I can look at you and see so much, know too much, ache to help you. There was no place where I could explain how I held a little pug whom I had shared my life with and loved with my whole being, who was my soul mate, and in the vet’s office I sang with my heart wide open, my lips close to his face, holding him to me like my own baby, I sang “Somewhere Over The Rainbow,” as he crossed and everyone in the office was crying but I held him until he turned cold, I touched his soft tongue hanging out of his mouth, I rubbed my face against his, and I cried so hard I thought I would not survive, but I have already adopted another little senior because this is what I do, I love the ones that others don’t want and they are more precious to me than diamonds or gold. I devote my life to these babies and I will do so until I am not able to do it any more. It is my privilege, and I know them and they know me in a way no other human ever has.

There is no place on that form to write something like that, but I believe that it matters.

I am so much more than the answers to those questions but they don’t want to hear that, it doesn’t matter to them.

In the end it made me feel like my life didn’t matter, but I know that it does. I have birthed 3 beautiful children and my daughters have birthed their children and I am part of a human legacy that is so much bigger than my own life and that is a miracle. I am blessed, so deeply and richly blessed, but there was not one space on that form where I could write that in.

I was actually shocked at how small and broken I felt when I finished that form but I know that I am so much more than the answers to those questions. I have been trying to come to terms with that for the last week, but I have to be satisfied with knowing, deep in my heart, that I am more than I could tell them. I did my best, and I will try to find my way into this new phase of my life without shame. I feel small and shy just now so I will stop here. But I am more. I know that I am.

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Comments

  1. People who create those official, soul-robbing, heart-killing forms are tasked with turning people into quantifiable boxes that can be ticked off to determine eligibility for any kind of assistance. What you are enduring on this essential quest for disability support is a story I heard, in achingly beautiful variations, repeatedly in the years I worked as an advocate for people in poverty. You are gloriously complex, deeply wise, and so extraordinary I can hardly believe my ordinary life crossed with yours – and how lucky that makes me feel. That you should walk to the mailbox feeling flat as a squashed bug is wrong, wrong, wrong. The gift is that your compassion continues to expand as you absorb the harsh lessons and turn them into love for others trying to climb over and around boulders thrown in their paths.

  2. So much of life is quantified by various measuring sticks: surveys, questionnaires, and other various bits of busypaperwork.
    So many of these measuring sticks are totally clinical and dry, unable to perceive life the way we who live beyond measuring sticks do.
    Next time the measuring stick casts a shadow across your path, take it and break it in half! then in half again!
    Remember that the measuring stick is not who you are, and it can only measure the least important aspects of your BE*ing.

    Blessed Be,
    Victoria

  3. Oh Maitri…my heart goes out to you. There have been times in my life where I was unable to do much at all except just try moment to moment to get through the day and not really doing anything that would amount to much. It would have looked very silly on paper. So I totally get what this must have been like for you. Your life does have so much worth. Even though you may not be “regular” according to some paper, or you may do things differently, you have made a sweet, meaningful life despite. You know, I have thought this before …that there are people out there who may have it all together on paper and wouldn’t be considered “disabled” by society, and yet…they don’t necessarily lead a meaningful life. I love how you have found meaning and reach out to share with others and help them too. Making an impact while we are here…isn’t that what it is all about?

  4. And you are a profoundly brilliant writer…I’m in awe of your writing Maitri. You are so much more. ❤

  5. You are also braver than most. Thank you for sharing your description of what it feels like to be vulnerable. I have learned there is no such thing as normal and if there was I wouldn’t want to be it. Hang in there Maitri. 🙂

  6. How can we be defined by some administrative questionairs? You are so much more than that. I am glad you got done with what needed to be done but realised that this isn’t what characterises you. Sending you hugs and love.

  7. Those forms….. I’m so sorry you feel like that.
    I recognise a lot in what you write.

    I detest forms.
    35 pages with too small printed questions to get the boys diagnosed. Forms for this, forms for that.
    Never the questions that really matter.
    After struggling 20 years with my autistic son he had to move to a protected living facility, because my heart couldn’t take the daily stress any longer. Countless times I had discussed his behaviour with his psychiatrist. That guy knew how difficult it was to deal with him every day.
    And then the forms came again. I had to put all his shortcomings into words and multiple choice answers. I had to paint that picture. And it left me gutted, so terribly sad and feeling like a failed.
    One of the ladies of the decision office told me it couldn’t be that bad. She never took time to read the psychiatrist’s report. But she gave in when my cardiologist called to say it was either him leaving home or me dying.
    Now he’s there for over 6 months they realise he needs even far more care than they thought.
    I was asked to fill the forms in again. I refused.
    That felt sooo good! To say: ” I’ve put it down once, that should be enough. And otherwise come and have the guts to talk to me in person, and listen to what life with him meant to me.

    I understand they need to put people into figures to make decisions nowadays.
    But a conversation and a smile means so much more.

    You’re a beautiful person, and I’m glad you’ve put it on the mail as quick as you did.
    But I always think: you can’t describe a butterfly, you can’t describe a human being.

    Huggggsss

  8. Rebecca Blackwell says:

    Thank you for such an apt description of how these forms make us feel. I know the forms are necessary and the “slant” on a person is assessed just to deal with a specific problem, but they can most certainly make a person feel like a “diagnosis” and not a human being. Thanks be to God that you know that you are more than the answers to the questions on any form… your awareness of your three-and-four-dimensionality is a gift of the Spirit. You speak well for many who can’t. Thank you.

  9. As big as the moon
    shining on all who need you
    casting a brave light

    you have such a big heart and soul, room enough for all strays, lonely ones, hurt ones, ones who wish to rise again, you are a mirror of solace, with your truth-telling. yes, you are bigger than all the questions asking you how small you are. right on, maitri. we love seeing you on our screen!!!! hugging you from afar xo ka

  10. Oh Maitri, I’m so sorry that the disability qualification process is so demeaning! I can feel your deflation as I read what you wrote. Reading of your experience made me sad too, for my own involvement with similar forms to qualify for services. However, I was on the other side of the table. I was a developmental therapist for many years in an infant development program for babies born at very high risk for various reasons. Although it was a wonderful home based and family centered program in many ways, we too were required to jump through bureaucratic hoops to allow families to qualify for ongoing services. Every few months each therapist was required to write a progress review report. While these were less formal it still involved not only outlining progress but ongoing deficiencies. Every 6 months a standardized developmental assessment was required as well. It was during these and especially after receiving the written report of how their child did not measure up against ‘normal’ standards that I could see the parents balloons of hope for their child’s future being popped. So, it seemed that as the family’s primary therapist we would be supporting them, cheering them on and delighting in every small gain and then we would slam them with how it was still abnormal. It still saddens me deeply to remember that and to have been a party to it.

    Yes, of course, it goes without saying that YOU are so much more than the answers to questions on forms. I personally feel very blessed to have crossed paths with you and am so often inspired by what you share.

    Big Hugs,

    Joan

  11. I feel so sorry for the beaurocrats who must force themselves to perceive the world through those sterile little boxes! How viciously the system that so many depend on for livelihood and financial sustenance hurts and dehumanizes them, and all of us. You rise above so beautifully and eloquently to show that you — and all of us who so resonate with the feelings you express — are indeed so much more than can ever be encapsulated or contained or limited by those forms. Bless you, Maitri.

  12. Oh yes, all the forms to fill out. I had to fill them out, and my husband also had to fill one out. It seems so impersonal but it’s just a means to an end. Hold promise of the outcome. And yes, you are more than a questionnaire. We all are, with our stories and quirks and bright, shiny dreams. None of us are a box to be ticked off. Keep holding on to your spirit, your rituals, your joys. Keep doing the things that make you whole.

  13. What a difficult process to detail one’s days, with coping or not. You ARE amazing, and certainly much more than the answers to a questionnaire about what you can do (or not).

    I’m reminded though of how thoughtful and caring that the “real” people at the SS administration have been through the process.

    And certainly, we are not defined by the labels that we might carry with us, whether anxious, bi-polar, or depressed — or addicted to whatever !

    Energy and light to you, Maitri.

  14. Katie (PinkSpazz) says:

    Maitri…. Oh my goodness. Your words for feeling ‘not normal’ wtf that means 😛 I have also felt the same way being on unemployment and having to deal with the judging looks of disapproval just trying to buy groceries so I can feed myself and my two pets, both of which were not wanted… But I have carried on and am trying to get a ‘normal’ job. I feel so deeply for you my dear and your words have meant do much to me in your process along with my ongoing process… I don’t want to be normal if normal is what filling out forms means :-/ but I still send you love and acceptance from a friend from afar… Katie 🙂

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