Yesterday was one of my most stressful days in a very long time, but it was also a day filled with the joy of relief that the hearing was over, no longer looming over my head with fears that I might somehow ruin everything I have been working for over the last year and a half.
I woke up at 5 in the morning, made sure I showered and dressed in the nicest clothes I own. My hands were weak and shaking from stress or as a symptom of any number of my many hormonal deficiencies, so I couldn’t do much with my hair but tie it back in a neat ponytail. Maybe I’m superstitious, but I put on my rose quartz necklace as well. That simple piece of jewelry has many charms hanging off of it, mementos from friends and family over the years. It’s a reminder of all of the support that I have from people in my life. The gentle weight of it resting on my chest was a good, passive way for me to feel reassured on a day that I knew reassurance would be key. We left the house at 6am sharp.
On the long drive to Indy, Justin and I picked up some fast food for breakfast. I usually don’t indulge in greasy sausage and cheese sandwiches, but I demanded the comfort food that morning. Is it a healthy coping mechanism? Hell no. Did it work? Hell yeah, it did! We ate our great American breakfast while listening to one of my favorite podcasts, “My Brother, My Brother, and Me” (MBMBaM)- specifically the Torino’s Family Fun Hour episode as requested by a lovely person in the MBMBaM Spoonies support group on Facebook. It made the ride go by much faster, which I was grateful for.
When we finally got to Indianapolis, parked our car, and walked down the block in the biting cold to the Market Center building where my hearing would be held, it was around 7:30am. We waited in the lobby until the SSA office doors opened at 8am, and we were directed to another waiting room on the next floor up where my hearing would actually be held.
The security guard asked me to remove my jacket and empty my pockets and place my purse (which is really more like a sling backpack with one strap) on the desk, and made me do the classic T-pose while he waved his “magic wand” over my body to check for weapons. Having found none on my person, he moved on to check the contents of my purse. I sat down in one of the waiting room chairs and watched as he opened every pocket and examined everything in the bag. I completely forgot I had a can of mace in there (a gift from a friend who wanted me to have some form of self defense) and the security guard gave it to Justin, informing him that it could not be on this floor. I told Justin that he could just find a trash can downstairs to put it in, because our car was so far away from the building and the cold outside was dreadful.
The guard returned to my purse and finished his inspection. He found my emergency injection kit I have to carry around for my adrenal insufficiency, and he chuckled a little bit. “This is the first time I’ve seen someone use an eyeglass case to hold their medication,” he said.
“Well, when you have to carry a syringe around with you everywhere, you get creative,” I replied with a laugh of my own. He put everything back in the purse carefully and gave it back to me.
While I waited in the lobby, I browsed Facebook on my phone and chatted with people to keep my worries from eating at me.
As the clock got closer and closer to 8:30, the recorder assigned to document my hearing came to the lobby to introduce herself to me and give me a brief explanation of what the hearing would be like. She said that we would be having a teleconference via video call with the judge. Also on the call would be a “vocational expert” whose job it is to consider my case and list the different jobs they think I can do. The recorder explained “she is going to be introduced as ‘doctor’, but she is not a medical doctor.” There was something to her voice that made me think she was trying to offer some kind of reassurance. I got the sense that I probably was not going to have a nice time with this “doctor”.
My lawyer arrived minutes before the hearing was scheduled to start, and the recorder went off to the small office in which my hearing would be held to get everything in order and connect with the Judge via video call. A few minutes later, she called my lawyer and I in. Justin has to wait in the lobby. He hugged me, we kissed, and he wished me luck.
I followed my lawyer into the room and we took our seats at a desk across from a large television screen that showed the judge sitting at her own desk. The recorder was at another table adjacent to us.
My hearing began.
My experienced lawyer went through the procedure surgically, having handled many other cases like mine. The judge seemed just as experienced, and she communicated first with the recorder, then my lawyer, and the “doctor” on the other line. When she addressed me directly for the first time, it was like a gong was struck in my chest. The moment suddenly shifted from surreal, to concrete. This was the exact event I had been stressing over for months, and driving myself up the wall worrying over for the last few days. It was here. I better not screw this up.
I answered her questions at the best of my ability. She listed off my medical records and concerns, which listed from A-1 to F-11, and went on to ask me directly why I think these medical issues effect my ability to work.
Having been an advocate for my condition online for years now, I was able to articulate clearly what my conditions are, how they relate to one another, and how the complexities of it along with the symptoms and side effects affect me day to day. We went over my work history of my time at Kroger, and I explained my time there from day one until the day I had to quit because my body refused to allow me to continue working. I tried not to, but I teared up a little talking about it.
The judge listened intently and asked questions here and there for me to elaborate on some more. She asked what my daily life is like now, whether or not I am able to complete household tasks each day, and asked if I have any help. I was happy to brag about Justin here a little bit. We talked about the long hours he works. I told her that he comes home on his lunch break for a half hour every day. She asked if I make lunch for him. I explained that on days when I’m feeling well enough, I love to make lunch for him, but I can’t always do that, and on those days he’s happy to feed himself.
About halfway through my testimony, my Fitbit alarm went off, signaling me to take my medications. I asked if it was okay for me to take my pills, and the judge allowed it, waiting patiently for me to retrieve them from my purse beside me and swallow them all in a single gulp with my bottle of water. I’m sure it looked a little silly, but I wanted to get over with the dose quickly. As soon as I was done, I went back to answering questions and explained my day to day life to her.
She asked me if there was anything that I wanted to add that we had not covered yet.
My mind was drawing an absolute blank. I felt like the room was closing in on me. My vision blurred and darkened and everything seemed like it was moving in slow motion. Seconds felt like minutes. I knew that there had to be more to discuss, but I could not for the life of me think of them in that moment. My heart raced.
I asked if I could have a few minutes to collect my thoughts and make sure we didn’t miss anything. The judge was very courteous, and said that she would go ahead and let the vocational expert give her testimony, and she would return to me, which would give me some time to think. I was so thankful for this.
As the vocational expert talked, I grabbed a pen and jotted down points that I wanted to discuss, so that I didn’t forget them when she asked me again. As I was writing, I also listened to the “doctor”. The judge asked if, in her professional opinion, she thought that I could obtain gainful employment.
The woman on the other line said “yes”. My heart sank. She went on to explain quite mechanically that there were a number of jobs that I could do.
She said that I could work in a call center. Did she not hear me when I told the judge that my Optic Nerve Hypoplasia causes me to have to take breaks from looking at computer screens so that I don’t get intense headaches from eyestrain? I know from friends of mind who have worked in call centers that you are required to read scripts off of a computer the entire time.
She said that I could work as a “line worker” assembling simple parts in a factory. Did she not hear me explain that my bouts of fatigue cause me to have to lie down at a moment’s notice? What factory foreman is going to put up with that?
She said that I could be a cafeteria attendant. Did she not hear my testimony when I explained how my health deteriorated even as I tried to work as a cashier? If I can’t manage a simple cash register, how in the world can she expect me to do this job?
I broke down into tears when she suggested next that I could work as a cashier. I tried that. I loved my job at Kroger. I wanted to keep working there. I tell my ex co-workers all the time that I miss it there when I see them.
Thankfully, there was a box of tissues on the desk in front of me. I wiped my tears away and tried to collect myself.
The judge went on to ask the vocational “expert” if she thought an employer would tolerate an employee missing three days of work a month. I caught myself shaking my head, and did my best not to react visibly even though I wanted to blurt out “I would be missing more than just three days a month.”
The vocational “expert” said that, in her professional opinion, an employer would tolerate an employee missing three to four days a month. The judge almost seemed incredulous when she asked the “doctor” to repeat what she just said, as if she wanted her to say it aloud again so she could hear how ridiculous that sounded. She repeated herself, then went on to say “considering her young age, I would recommend-” her voice trailed off in my mind.
Age? My young age? Age means nothing when you are born with a defective body. Without the medications I take, I would be dead. Even with those medications, my doctor has told me- and I had reiterated earlier to the judge- that no matter how well we get my treatment balanced, I am always going to experience symptoms that affect my health.
And this “expert” wanted to dismiss all that because I am young?
When the “expert” finished her testimony, the judge asked my lawyer if he had anything he wanted to add. He brought up what the “expert” had said about an employer allowing an employee to miss four days a month, and asked where she was getting those numbers. The expert replied in a snippy manner and insinuated that he was being argumentative. He insisted that he was not, and asked her again to explain why she thought her suggestion that employers would tolerate that kind of absenteeism was reasonable. I don’t even remember her what her exact explanation was, but I know it made my lawyer laugh.
I think at that point, I was going over my notes, preparing for the judge to come back to me. Sure enough, she did. She asked if there was anything we had not gone over that I would like to bring to her attention.
“Yes,” I replied, “I don’t think we really went over my adrenal insufficiency very well. Can I talk about that a little bit?”
“As long as you are talking about it in the context of how it affects your ability to work, then yes,” she said courteously. That, I definitely could do.
I went on to explain that due to my endocrine disorder, I have secondary adrenal insufficiency. I explained that this means that my body does not produce the stress hormone cortisol on its own. I briefly explained what purpose cortisol serves in the body, regulating blood pressure and water retention among other things. I explained the risk of a potentially fatal adrenal crisis, of which I have had two in my lifetime. I also explained what stress dosing is, and told her that I had even taken a stress dose before the hearing. She asked if I took stress doses during my time working at Kroger. I told her that it is not safe to stress dose every day, because overuse of corticosteroids can lead to complications that can actually worsen adrenal insufficiency over time.
She thanked me for elaborating, and asked if there was anything else I wanted to add. I told her that I wasn’t sure if it would ever come up, but I wanted her to be aware that I have the potential to receive ad revenue from my videos on Twitch. I explained that I had just received affiliate status, and chances were I would likely never make enough revenue to reach the $100 minimum required to cash out, but I wanted her to be aware of that in case it ever came up. She thanked me for being honest with her about that, and asked if there was anything else I wanted to add.
I decided then to tell her about the volunteer work I did over the summer. I explained that I loved helping out at the Purdue extension office, but there were days that I couldn’t attend a meeting or help out with the community garden because my health would not allow it. My voice cracked a bit and I could feel myself losing my composure, but I kept going. “I want you to understand that I am the kind of person that has to try. I am not a lazy person.” I left it at that, afraid that I would become an award mess if I kept rambling on like that.
The judge shook her head, gave a gentle reassuring smile and said something along the lines of “you didn’t strike me as lazy.”
I can’t express how much those words meant to me. Hearing her say that filled me with so much hope and validation, it made the whole hearing so much less stressful overall.
The judge called the hearing to a close, and the recorder announced that we were now off the record. The teleconference ended, and I gathered my things.
Both my lawyer and the recorder immediately started venting to each other about how unprofessional the vocational “expert” had been. “That was unusual.” The recorder said to me, really emphasizing it. “They usually aren’t that extreme.”
“Maybe I’m just a terrible boss, but I would never put up with an employee missing three days a month. That’s ridiculous.” My lawyer said incredulously. The recorder apologized for the experience I had just had, and said that she would question that “experts” credentials if she ever had to deal with her again.
I had gone into that hearing expecting it to be that difficult, so I was a little shocked to hear that my experience was more harsh than usual. My lawyer led me into another room where we could talk for a moment. The recorder returned to her own office. He explained to me that the vocational expert’s behavior was in fact out of the ordinary, and that could work in my favor since the judge seemed to realize it as well. He then explained that the disability office is so backlogged, it is probably going to be four months before we have a verdict.
I’ve been fighting for this for about a year and a half now. Four months is most definitely ridiculous, but I’m used to waiting at this point.
My mom lives in Indianapolis, so Justin and I decided to take her out to lunch at a nice restaurant since we don’t make the trip up there often, and I needed a good distraction after the day I just had. We picked her up and went to my favorite authentic Japanese restaurant, “Sakura” on Keystone Avenue. Justin suggested we eat there, and I was super excited to finally be able to use the Japanese I leaned in high school and refined on my own a little last year. The wait staff was very patient with my awkward Japanese, and they seemed happy that I was able to communicate a little bit, even though I ALMOST said “tits” (oppai) instead of “I’m full” (ippai) at the end of our meal. I cracked up laughing so hard as I explained to my mom and Justin the rude mishap that almost took place!
I indulged in something a little on the expensive side- a plate of deliciously delicate eel, my absolute favorite seafood. I felt a little guilty for spending so much money, but it felt really good to treat myself.
After we ate, we went to Sakura Mart, the restaurant’s companion authentic Japanese convenience store in a separate building next door and my mom and I bought some goodies. I splurged a little bit, but restricted my spending overall. My mom, on the other hand, went on a Japanese spending spree. She even surprised me by secretly buying a gift for me from the shop, an absolutely adorable hand painted sake set featuring my favorite animal- cats. ❤️ That was so sweet of her. The cashier and I were gushing over the surprise おみあげ. Pretty sure her entire day was made when we put that basket full of goodies on the counter in the first place, but my mom’s surprise gift was the cherry on top.
We took mom back home and I visited with her for a little while as we sampled some of the things we just bought. My sister and her boyfriend came by to visit as well, and it was great to be able to see everybody for a little bit.
On our way back home, Justin and I stopped by my grandma’s house for a little surprise visit before making another quick pit stop at my aunt’s house along the way.
Seeing family, smiling, laughing, and enjoying myself after the stressful hearing was such a relief. I wound up crashing out early last night and I am unfortunately exhibiting notorious low cortisol symptoms today, but I’ll be alright.
Now, all we can do it wait.
I’m trying my best not to think about it too much.