Bittersweet

One phone call changed my life forever.

The morning had been spent outside, enjoying the sunny warmth of an early fall day.  As I approach the house for a glass of water, I hear something.  Oh, the phone!  I run in, grab the phone, and look at the Caller ID.

US GOVT GSA FTS

I hesitate a moment.  Hmmm… Not Mary.  Who is it?  What do they want?  Another telemarketer?  I assess.  Do I have the bandwidth, the clarity, to speak to someone who isn’t Mary without preparation? In the space of a breath, I make my decision. My curiosity today outweighs my fear of sounding like a clueless, inarticulate idiot.

I press the talk button and put it to my ear.

Dial tone.

Dammit, I’m a fraction of a second too late.  I sign in frustration.  Okay, well, if it’s important they’ll leave me a message.  My phone service – Vonage – emails me a transcription of my voicemails and the recordings themselves within 15 or 20 minutes of a message being left.  That way, I can get my home phone messages regardless of where I am… and I don’t even need to listen to them, I can just glance at the transcription and get the gist of the information.

I put the phone in the cradle and continue on with my day, not giving it another thought (which is pretty easy to do with a brain injury).  A few hours later, I wander to my phone to see if I have any texts or emails.  Oh!  The person who called did leave a message.

“Hello, this is a message for Kim… I am calling from the Social Security Office in Burlington Vermont regarding the claim you filed for disability benefits…”

What what?  The Social Security Office has never called me.  Never.  Not in 5 1/2 months.  They always – always – communicate by mail.  Why are they calling me?

My hopes immediately skyrocket.  They’re calling me because they approved my request for benefits!  Followed quickly by a quieter internal voice – they’re calling me because they denied my claim.  Experienced bureaucrat steps in – they’re calling because they need some stupid bit of information they can’t find on one of their forms… something completely meaningless and a waste of time… they still haven’t made a decision.

I go into aggressively positive mode, just in case the energy I throw out into the universe can still effect the outcome of my disability claim.  Singing, I skip through the house – I got approved.  I got approved.  That’s why they’re calling.  I got approved.  Nervous.  Excited.  Quickly my brain fogs from the emotions that I can’t name running through me.

Okay, I need to call him back.  Immediately.  I look at the time – 12:03 pm.  Damn.  No government employee will be working during lunch.  I wait, jotting down the name of my contact and his phone number.  I pace.  I prep.  Okay, if I call and go to voicemail, I won’t leave a message because I really want to talk to the guy directly, not just play phone tag.  I want an answer today.  I write that down on my notepad too, so I remember not to leave a message.  Things like that can fly out of my head when I’m nervous.  I think through the phone call, what to say, how to greet him – things I normally do since my injury, when I communicate with people who aren’t Mary.

Speaking of Mary, she calls me.  She also gets emails of our home phone voicemails.  She’s excited / nervous too.  I promise to tell her as soon as I know anything.

At 1:06 pm, I call, follow the voice prompts, and suddenly the phone is ringing.  Four rings, voicemail.  My note says not to leave a message, so I hang up.  I pace around some more.  Eat lunch.  1:57 pm.  To voicemail.  Short nap.  2:39 pm.  To voicemail.  I decide to leave a message for him, next time.  Maybe the phone doesn’t even ring to his desk, and he’ll only get voicemails.  3:10 pm, to voicemail, leave a message.

Shit.  Now I have to wait until the next business day to hear anything.  Fuck.  In the evening, Mary and I talk about it a bit, still both nervous and excited, both hopeful and terrified.  Vermont is a small world – Mary recognizes the name and accent of the gentleman who called me.  She worked with him 15 years ago at a call center.  Her reassurance that he’s a very good, kind man takes away some of my fear about our upcoming conversation.

I have doctors appointments in the morning, but I’m back at the house midmorning.  I call at 10:31 am and leave a message (as my note instructed me to do).  Another call at 2:10 pm.  3:45 pm.  Nothing.

And now it’s the weekend.  A whole weekend of waiting.  Mary and I don’t speak of it.  I do my best – with good success – to not think of it.  The underlying emotions clog my mental and physical abilities, and I find myself with little energy or mental clarity.  The tablespoon serving of energy that I have during my normal life turns into 1/2 a teaspoon.  My frustration at my limitations grow, dulling my shine even more.

Finally, Monday morning arrives.  I need to leave the house at 8:30 am for an appointment.  I decide to call when I get up, and then before I leave.  A call at 6:30 am. To voicemail, and the automatic voice also tells me they are open 9-4.  Bullshit.  What government agency has employees that only work 7 hours?  My next call at 8:15 am.  Again the automated voice tells me the office is closed, but it can send me to the extension so I can leave a message.  Two rings, and Willy, the Social Security agent, answers.  Finally, I’ll have a fucking answer.

Or not.  I introduce myself, tell him I’m returning his call.  Give him my social security number.  His computer is running very slowly, he can’t pull up my information.   He has so many cases he doesn’t know why he called.  He thinks he had a question, but he was able to resolve it himself and so he doesn’t need anything from me now.  I tell him I have to be out the door in 15 minutes.  He says he will call me back in five minutes.  Five minutes.  I pace.  I get ready to walk out the door – appropriate clothes, necessary forms, wallet and keys.  I’m ready to go.  I wait.  8:30.  8:35.  Dammit, I hate being late, and, really, Willy could call me back in 2 minutes or tomorrow with equal likelihood.  Frustrated, I leave.

When I get out my appointment 1 1/2 hours later, I glance at my phone and see I have a message.  I guess he did call me back.  I open up the transcription and glance through the long rambling message and see

…”based on your medical decision you were approved for benefits…”

Before I can even process it, or properly read the message, Mary calls.  “You got approved!” she says.  I hear the amazement and the tears in her voice.  It hasn’t clicked for me yet, and I say “Really?”  She reassures me I have been approved, that it’s real.  Joy and disbelief flood me.  The whole path of my life, changed just like that.  I am stunned, amazed, confused.   Later, I read the transcription of the voicemail properly, and listen several times to the audio of the voicemail, all to help it sink it.  In the moment, though, I just trust Mary’s perception and move forward with this new truth.

And that’s how I learn I have been approved for disability benefits.  I guess technically not a telephone call, but a telephone message changed my life.

The rest of the day, I spend in amazement.  We both spend in amazement.  Laughing like maniacs.  Crying over and over again.  How is it possible I got approved the first time?

The reason for Social Security’s call?  There’s a paper I need to sign, and I need to come into the office to do it.  Mary needs to be there too.  She calls him back, her turn to make the repeated phone calls that go to voicemail.  I just watch.  After about an hour of trying, we go our separate ways – her to her studio with the phone, me to bed for a nap.

About 45 minutes later, she wakes me.  Willy called and she’s talking to him right now.  We go downstairs and I sit at the table, anxious, listening to one side of the conversation.  She gets the amount of my benefit (enough), when I was determined disabled (at the can incident, discussed here), and makes an appointment for us the next day to meet him for paperwork.

We go to the appointment, fill out the paperwork.  They now have all they need.  But, even after an appointment, I still have nothing in writing saying I am approved for benefits.  Nothing real to rest my hopes and plans on.  In curiosity, I go to the SSA website and look at what it says:

screenshot-32

Not particularly helpful.

A week later, a check arrives in the mail.  No explanation.  No documentation.  Just a check from the US Treasury.  Because of the meeting with Social Security the week before, I know what it is for – back pay of my benefits.  In reality, the check is already spent – it’s this month’s payment I’ll use to cover my expenses until the end of October, and last month’s payment that will go directly to my mountain of credit card debt.  Part of me had hoped to get some big payout, to have been found disabled from my first injury, but that didn’t happen.  I was too functional to receive benefits for the first two years of my injury, trapped between able and disabled.

Yesterday, I finally got a letter in the mail.

Hard to believe success and failure can be written with the same words.  Success that Mary and I fought with a giant governmental entity and won what I need to survive.  Failure that I couldn’t find some way, some way within myself, in the world, to keep working and be a financially independent adult.

The letter says I’m disabled, right there in black and white.  I can’t deny it.  Dis-abled.  Un-able.  Unable to think complex thoughts.  Unable to be independent. Unable to live the life I want.

This letter means that unlike many, Mary and I have gotten to the end of the SSDI game and we’ve won!  Yay us!  And.  That doesn’t make the last six months, heck, the last 2.75 years, of not-knowing go away.  The gulf of not being able to make any plans about the future whether it be buying a new bed, visiting family, even paying for heat this winter.  And the worry, the anxiety that ate at me from the inside, carried around wherever I went, every moment of every day.  Constant four-hour round trip visits to Dartmouth Hitchcock Medical Center to get the documentation I needed for my applications.  So much energy and thought put into filling out forms for someone else to judge me.  Mary taking day after day off work to go with me to appointments to be my voice, my advocate.  But that’s done now, for both of us.  Finally, amazingly, that’s done.

Getting approved for SSDI was a giant hurtle.  Colossal.  So many people get stuck here, not able to get what they need.  But, amazingly, not me.  Now, though, I look out into the future and see – Shit, I’ve only jumped over a few hurtles.  There are so many, SO MANY, more to go between where I am now, and where I want to be.  It’s like I thought once I had walked from Maine to New Hampshire to Vermont I’d be done.  But, now that I’ve arrived, I realize that I am not done.  I’ve climbed over this last hill, and instead of reaching the ocean I see land rolling out into the distance, on and on and on.  I still have 3000 miles to go.  Maybe more.  Wish me luck, my friends.  Wish me luck.

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7 Responses to Bittersweet

  1. I am so happy for you. I am dealing with trying to get disability benefits myself for post concussion syndrome. Declined the first time and I will be talking to a lawyer today. I totally get the endless waiting, forms to fill out – actually having someone else fill out the forms….. You won!

    Like

    • kwittorff says:

      Hi Doreen. Best of luck to you on your SSDI challenge. I hope your lawyer is able to help. I’m still shocked, on some level, that I got approved the first time around. Hopefully for you the second time is the charm. Blessed be.

      Like

  2. Steve Gerard says:

    I am pleased for you but acknowledge the bittersweetness of it. The sense of relief is tremendous while the sense of having a “documented disability” is hard to digest, even if it simply confirms what you already have experienced. Remember that it is a noun about your legal status rather than the verb that you are that you express so eloquently in your writing.

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  3. Jorie says:

    Congratulations! You advocated for yourself and won! I saw that you mentioned failure, but I think if there’s a failure in this story, it is a failure of all of us as a society to make room for the skills and talents of people who need accommodations. It is not your fault that you didn’t create an accommodating job for yourself out of thin air! Anyway, thanks for another excellent blog post…the suspense was intense!

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  4. It took almost 3 years and a court hearing to get approved. But when the judge gave his ruling, I was now officially disabled. I knew I was. I knew I could no longer work. But when the judge ruled I was disabled, it really hit home. I was really glad to be approved for SSDI but it was the saddest day of my life because I was now disabled.

    Like

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