Disability

It's time

I’ve officially applied for disability benefits. And it’s taken me a full two years to get here. A full two years to recognize that I’m not the person I was before the TBI, and the ravages of the injury make it impossible for me to work the way I did before. It was a fantasy but one I clung to like a drowning victim clinging to a rock. Two years of denial. Two years of suggestions from friends, family and neurologists. Two years of trying to maintain the fiction that I’m still the warrior I always was.

It was never true. I’m not that warrior anymore. I’m still tough as nails and strong AF but not in the way I was before. The physical impacts, the emotional impacts - all of it is too much and threatens to swallow me. I fight every day to hold on to the person I’ve always been, all the while knowing that the injury changed everything - who I am, what I can do, what matters, my relationships - everything.

So here we are. My concussion neuro strongly suggested it and when I said that yes, I’m open she had a one-word response: Finally.

We’re finally here. The idea of completing a government application is daunting under any circumstances, but doing it with a head injury dramatically increases the degree of difficulty. I thought Nick would be here when I did it but it overlapped with when he was still in the hospital. He’s exceptionally good at paperwork and record-keeping. I’m exceptionally bad at both.

But he wasn’t here. Two other people volunteered to come to the rescue - my brother and a close friend, both of whom have a lot of experience with the system.

We talked about a zoom call so we could walk through it together, and we landed on a day, but not on a time. So it didn’t happen.

Instead, alone here with Bear in the apartment on Indigenous Peoples Day, I decided to do it. I’d gathered everything I’d need. It’s a sprawling application and requires tons of info on:

• work history

• income history

• medical history

• meds, therapy, treatments

I was ready. I had tax returns and MyChart info and documents. A foot-high stack of them. I did what I usually do when I have to do what seems to me to be a Herculean task. I assemble, I organize but I don’t start. I need to let the project sit for a minute.

On that Monday, Indigenous Peoples Day, I decided to start. It’s not a super friendly website - think internet 1.5 (if I’m generous.) But I went through it, painstakingly, aware that the TBI can make concentration and focus difficult. I worked through it section by section. It took hours.

And then I got to a simple screen with one question: since disability can take a long time to get approved and kick in, do I want to take my social security retirement benefits early?

That stopped me. It was a good question and I thought I knew the answer but wasn’t sure. So I emailed my financial advisor - we’ve been working together for over twenty years.

Then I remembered - it was Indigenous Peoples Day and a bank holiday. So I realized I probably wouldn’t hear back from her. And I was anxious to get this finished.

The right answer was no. I clicked yes.

There are just certain things that people with TBIs shouldn’t do alone. This is one of them.

Shortly after I heard from my advisor and she said the answer should be no. Damn. I knew it.

Ok, gotta be fixable, right?

I went back on the site, looking for help. There’s no chatbot (I’m a fan of a high-quality chatbot.) The only thing you could do was request a call back. So I did.

Several hours later I got a call from a gentleman who sounded elderly and experienced. I explained what happened and asked if he could help.

Yes and no.

No, he couldn’t fix it on his end. Yes - I had two choices. Here they are:

door #1: cancel the application and start over

door #2: go in person to a Social Security office and wait till someone could help me.

Yikes. The idea of doing the entire application over was physically nauseating. Ugh. But the idea of going to an office was worse. I explained it to him this way: Sir (yes, a real Sir story, not TFG’s bullshit) the reason I’m applying for disability is because I have a TBI. And a TBI makes it impossible for me to go someplace I don’t know when I don’t know how long I’ll have to wait. Im-fucking-possible.

He was kind but said that basically those were the two available options.

For the next few days I woke up every morning with this haunting me. I’ll do it today, I’m sure of it. But my to-do list with Nick laid up kept growing, and I let that take over. I kept ignoring it, hoping somehow it would just get fixed.

Because that’s how things work right?

Miraculously, yes. A few days later I got a call from a woman at the Social Security administration. She introduced herself and explained that she was on the administrative side of disability, not the medical side. She’d been reviewing my application and called because she had a feeling I’d answered that one question wrong.

How did she know. Seriously.

Yes, I said. I clicked that in error. No problem she said, I can fix it.

Really?

Really.

Then she explained the process and the timing. The phone message tells you that the current review process is between 200 and 250 days. The merciful angel on the phone said that wasn’t really accurate. The window is 4-6 months, but she said few of the cases require the full 6 months. Those are in cases when the medical documentation is difficult to get.

That won’t be true in my case, I told her. There’s tons of documentation. Two neurologists, hundreds of treatment attempts, multiple rehab specialists, tons of meds and other interventions- it’s all there.

She thought my case would take more like 4 months, and that the medical side may call with questions. Take the call, she said. Answer the questions. I said yes and while it hasn’t happened yet if the call comes I will answer. Obviously.

Then she gave me her direct line, and after the call I got an email from Social Security to let me track where my application was in the process. I’m apparently in stage 3 of 5.

Now we wait. But I’m waiting with far less anxiety, all because this lovely, helpful woman went out of her way to get in touch with me and offer her help. And I took the help. That’s another impact of the injury - I’m much more willing to accept help.

Now we wait. She said that I might be denied; that’s not uncommon. And if I’m denied I’ll need to appeal, which she said normally fixes it.

It was a hard decision to reach. I never thought I’d see my career end with a whimper, not a bang. And I’m hopeful that I’m not done working. Not full-time. Not high pressure. But I can consult, I can freelance, I can do projects. I can mentor and I can teach. My cognitive skills weren’t impacted. I can think, I can write, I can present, I can solve problems - all the abilities that powered my career for all these years. And I’d love to still contribute however I can.

A hard decision, a destination that seemed far away is now in view. It’s time. I am disabled. It’s true and real and something I live with every single day.

It’s true and it’s taken me the full two years to realize that I’m disabled and the disability makes what used to be normal quite impossible.

In a few months my status will shift to “On Disability.”