Gifts of Story

“The additional medical records you sent are still insufficient.”

I’m looking at today’s email from the disability lawyer’s — our third disability lawyer’s — office. It doesn’t surprise me.

“The records from the Neurologists are good, but are still not enough to prove disability during the relevant period…Actual treatment records are ideal.”

This is true. But my partner kept denying that anything was wrong. That lack of insight is part of her disorder. As a result, we do not have treatment records from the period Social Security wants, relevant or not.

I had scanned a note my partner had written recently and emailed it to the lawyer’s office. In the note, my partner asks if getting a job would endanger her chances of getting disability.

In answer to her, the lawyer’s office wrote, “It makes no difference to your claim if you attempt to work. It will neither help nor hurt because you are not eligible for SSD without medical evidence substantiating your disability… as I am sure you are aware, your doctor has stated that you are clearly & permanently 100% disabled – and, he opined that you would be unable to manage your own affairs without some supervision.”

All very well and good — except that my partner disagrees with the doctor’s assessment and wants to send the lawyer’s office her rebuttals. Which is also part of her disorder.

My partner has created a new folder, devoted to her job search. As I write this it is 1:30 in the afternoon and she is sleeping.

Yesterday she was talking about going to a particular park today, for which we would have to make a reservation and show up at a specific time. I suggested that we first see how we do with parks where one could walk in at any time, and she agreed to that. I take a wait-and-see approach because it is not unusual for her to cancel out of things at the last minute. (So far, she has not done that with her medical appointments, and I am very grateful for that.)

I need to decide where and how to spend my energies in this. For three years and especially last year, we had made a tremendous medical push to find out what was wrong and to get records to that effect. We were told we needed those records for a claim to Social Security — except that now we are being told they are worthless — not for what they say, but because they have the wrong dates on them.

For me, their worth lies in their validation, even if my partner disputes them. Will arguing reason make a difference? I don’t think so. On the other hand, I think the struggle has brought us closer together, because I now understand, much better than before, what is going on. And, to some extent, my partner realizes it, too.

Otherwise, I think the best course of action is to let her persist in her delusion — and, gently, to maybe try to penetrate that delusion if I see any kind of opening that might help give my partner some insight. Some days she has more insight than others. For news of the sort that we have received, I know she needs space and time to process it all as best she can. Sometimes the best thing that I can do is just be there for her and otherwise stay out of her way.

I’ve spent the past week in emotional limbo. On the one hand, I feel helpless in this situation. On the other hand, I try to approach that helplessness with something akin to grace. Life with my partner seems to come in stretches of inertia punctuated by chaos. But love and laughter and a sense of wonder also persist — and when I am not frustrated, terrified, or heartbroken — or, simply, numb — I am happy, and thankful for what I do have.

(The Moon and Venus, photographed freehand from the parking lot at the mall, where my partner and I shopped on Saturday. Both of us remain captivated by the sky.)

I ask myself if I am wimping out, if I am too ready to give up this part of the fight. I will share the email with my partner because even though I am her caregiver, in the end it is still her decision. Even if she decides to go forward and then changes her mind. We still have to finish the paperwork, which she is having such a tough time with, before the lawyer can attempt to do anything.

“Just do the best that you can and send me what you have,” the office says.

Yesterday an online friend posted a link to an article by Julie JC Peters, in Elephant Journal, “Why Lying Broken in a Pile on Your Bedroom Floor is a Good Idea.” Posted last June, it is one of the most popular articles on the site.

Peters writes about a “relatively unknown Goddess from Hindu mythology: Akhilandeshvari.” Akhilanda for short. Her name means The Always Broken Goddess.

“But this isn’t the kind of broken that indicates weakness and terror,” Peters explains. It’s the kind of broken that happens “when your future dissolves in front of you.”

In other words, she says, “your expectations of the future are meaningless. Your stories about the past do not apply. You are in flux, you are changing, you are flowing in a new way, and this is an incredibly powerful opportunity to become new again: to choose how you want to put yourself back together. Confusion can be an incredible teacher—how could you ever learn if you already had it all figured out?”

The way I see it, I’ve been trying to learn from medical and legal “experts,” and to a certain degree I have. But (to borrow from another myth), they are like Virgil in Dante’s Divine Comedy. They can take us only so far.

As for Akhilanda, Peters goes on to say that The Always Broken Goddess rides a crocodile, which kills its prey not through brute force, but through spinning it in the water to disorient it.

The crocodile also “represents our reptilian brain, which is where we feel fear….By riding on this spinning, predatory, fearsome creature, Akhilanda refuses to reject her fear, nor does she let it control her,” Peters writes. “She rides on it. She gets on this animal that lives inside the river, inside the flow. She takes her fear down to the river and uses its power to navigate the waves, and spins in the never not broken water. Akhilanda shows us that this is beautiful.”

(Looking at you, Gator Mom! I swear I wrote this part of the entry before I saw yours. :-) )

“We were never a consistent, limited whole. In our brokenness, we are unlimited. And that means we are amazing,” Peters concludes.

I draw great comfort from this myth. One of the things that drains me is the atmosphere of expectations (especially my own, internalized ones) in which I find myself. Another of today’s emails comes from a friend who writes that she hopes our lives “are smoothing out a little.”

Well, yes and no. The “yes” part in one area of our lives can very easily turn into “no,” while the “no” part can turn into “yes.” I can’t give a straight answer because no straight answer exists.

What it also tells me is that whenever my partner and I interact with a professional, I have a mental calculation to make. Is that professional giving more weight to his or her own discomfort with our situation, than to the situation itself? What seems to be best for my partner, given her quality of life? And, within those limitations, what do I need for my quality of life? When a disconnect occurs between reality and external (and internalized) “rules” and expectations, then the latter no longer apply. That part becomes broken, in the way that Akhilanda is broken, and all that remains is improvisation.

That is how I currently view our situation. I am learning to improvise.


Waiting for me at the post office late last week was Trish’s extraordinary book Forever a Caregiver.

(Taken at the post office, right out of my PO Box.)

I couldn’t put it down.

This book touched me on so many levels. What jumped out at me first was its unflinching honesty — the internal voice, self-doubts, and humorous irreverence as compared with the various “shoulds” of polite society. In other words, what’s real.

Following that was the drive to understand. Understanding illness is only part of a story that extends to and embraces the drive to understand people, not just within a generation but across generations. Not through one pair of eyes but through several pairs. Forever a Caregiver is a tapestry of intimate vignettes and an interweaving of multiple timelines.

It’s a book about forgiveness, self-forgiveness, and redemption. It takes an unsentimental look at what was and what is. There is no sugar-coating here, but neither is there condemnation. It is, in a way that melds simplicity and complexity. It both transports and transforms the reader.

It is also a testament to sheer human resilience and survival, especially in those places where strength and vulnerability merge in ways that are confusing for an adult, all the more so for a child.

And, first and foremost, it is about love. Not in a “this is about love” sort of way, but expressed by the actions themselves. It doesn’t explain itself. It doesn’t have to. Love instead infuses the narrative, as unobtrusive and as crucial as breathing.

Thank you so much, Trish, for writing and sharing this, and also to all who supported you in the telling. And thank you, Denise and Caregiving.com, for this wonderful gift.

(Our azalea buds have opened.)

Related
Avatar of ejourneys

About ejourneys

Ejourneys cares for her partner, who has MS that acts like traumatic brain injury.  Author of Caregiving in Five Lines (all proceeds from sales benefit Caregiving.com) and contributor to several CareGifters anthologies, ejourneys is a panelist on Your Caregiving Journey's "Hot Topics" show.  She manages the groups Gay, Lesbian, Bisexual, and Transgendered Caregivers; MS Caregivers; and Caregivers Create; and is a co-founder of VRide.

5 thoughts on “Gifts of Story

  1. Avatar of JaneJane

    Hi ejourneys:

    What a wonderful post. I’m sorry that you are fighting so hard with SSD. I know what this is like I went through this with Nicole to get her SSI.

    Trish’s book was wonderful… what a beautiful picture of your azalea in bloom.

    Hugs:o)
    Jane ~ mom to Nicole, 17 yo, VSD, PAH, Eisenmengers (dx 1/22/10)
    BHJS (dx 2/4/11)
    “You’re braver than you believe, and stronger than you seem, and smarter than you think.”

    Reply
  2. Trish

    EJourneys, What a beautiful review of my book! Oh my gosh, your words brought tears to my eyes. For so long, I struggled with writing it (10 years of struggle!) and getting the voice of it just as I wanted. There isn’t bitterness in my experiences and I so wanted to share what is “behind the curtain” so others would know they are not alone in these difficult experiences. It is about love and there is no “sugar-coating” or “condemnation” and I’m so happy that came through and spoke to you. Your description of it is so appreciated and means the world to me.

    I’m sorry about your struggles with Social Security. I feel your pain after going through that. Your photos are awesome – thank you for sharing them. I love the flower but also the moon and Venus are so soothing to me. Thanks again for your kind words and I wish you much luck with the application and in making it to the park. Enjoy 9and take more pics)!

    Reply
  3. Avatar of DeniseDenise

    Well, EJ, I just think you are truly extraordinary–what you write, how you write, what you see (the sky!!), how you document. What a lovely, lovely post.

    I love the insight about confusion. It’s within the confusion that we decide to look for answers. And, it’s our very own answers we seek.

    (FYI: Trish’s book was in our Book Club; you can listen to her talk about her book on Your Caregiving Journey here: http://www.caregiving.com/2011/10/why-forever-is-okay/)

    :)

    Reply
  4. Avatar of KathyKathy

    EJourneys,

    I too love the sky and especially the moon :)
    The way our home faces, the moon, at times, appears to be rising at the end of my driveway. I always said Hubby loved me so much he gave me the moon when we built our house LOL!

    I understand your struggles with SS! Even after I had all of Hubby’s documents gathered and sent, they seemed to have gotten lost in the system and I had to go through the tedious task of gathering everything again! So frustrating to do! I DID learn a very valuable lesson about making copies and certified mail after that first incident. Nothing important has ever been lost since. Hmm

    I was wondering, Since your partners Dr said she was incapable of handling her own affairs, have you considered a guardianship? I had to get one for Hubby because he would never give a POA to me and he put us in a terrible financial predicament. Sadly, extreme measures had to be taken to protect him, me and our home and lifestyle (We kind of like having our utilities on)
    Perhaps having one in place would also expedite the SS process for your partner. Just a thought.

    Reply
  5. ejourneys

    Thanks, all!

    Kathy, according to my lawyer (with whom I had discussed guardianship last year), my partner is still capable enough so that she would still be judged competent in a court. I have a list he gave me of competency lawyers and the order in which I should take steps if conditions worsen sufficiently.

    I had spoken with my lawyer after an incident in which my partner’s now-former therapist (from whom my partner had been “maxed out”) had threatened me with jail and my partner with being taken away, believing I had legal guardianship. I have POA, which means legal guardianship in some states but not where we live. My partner is also a hoarder (her past diagnoses included OCD and schizophrenia, disorganized subtype). Back in 2009 I had our GP call DCF on my behalf. An inspector told us our house was in danger of being condemned. That kind of pressure allowed me to get my partner to accept help, and it enabled me to tackle the worst of the mess and get some needed repairs done. My clean-up effort is still a sore spot with my partner.

    For years she had held the POA paperwork and was “going to get around to it.” I finally convinced her to sign it in 2009, six days before her hysterectomy, telling her that if something happened to her on the table I would be powerless to do anything without the POA. Once I had it, I could start getting a team of doctors together in an effort to help her.

    I am so sorry about the extremes you and your Hubby had to go through, along with the lost paperwork. (We’re on our third disability lawyer because the first refused to take our case and the second lost records. I keep copies, scan everything into my computer, and put backups on a flash drive.) I’m glad you could find a system that works for you — complete with the Moon! :-)

    Reply

Leave a Reply

Your email address will not be published. Required fields are marked *

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>