July 3rd. 2017.
Probably the last time I had sun-kissed skin. My freckles were out in full swing. My hair was wavy from being out in the pool.
I celebrated the 4th a day early this year.
I vividly remember my brother coming over and the food being cooked to be ready at 2 PM on the 4th. I remember stumbling down the stairs, looking at my family filled with embarrassment and shame because I knew I needed to leave.
I felt the storm that was coming in. I knew my four hour drive back to Clemson was going to be increasingly difficult with every moment that went by.
So I packed up my bags, ate what I could, and raced home so I’d be in my bed before the worst of the pain took over.
July of 2017
That’s the date Social Security determined my disability started.
A year and one month prior to recognizing that I couldn’t keep pushing and needed to consider disability as a reality.
A year and three months prior to when I ever started my application for disability.
A year and six months prior to receiving word that I’d been approved.
On my first try.
You know, I sit here and I’m looking at that picture. Thinking wow I wish I could just go back to then. I looked so happy. I looked healthy. I looked like I was really enjoying myself.
I want you to sit here and look at the photo too.
Because, in that photo. I’m disabled. I just didn’t know it.
I bet if I went in and requested my disabled parking placard, you’d harass me in the parking lot if I actually used it. I mean I’ve seen you do it. So I haven’t requested the placard.
I look back and I can’t help but wonder how I ever moved across the country and started school and a new job in the same weekend.
But then I remember how cranky I was. How angry I was with everyone around me. I didn’t have any space to even breathe and I was treated as the problem.
I remember every single late night fight with my sister. Every argument about how ridiculous I was for everything I expected.
I remember crying because I truly thought I needed to suck it up and that my expectations were unrealistic. My needs were selfish.
I remember finally gaining the courage to try and talk through it all which lead me to writing. It was amazing how much well thought out communication could change peoples perspectives and help them understand exactly what I was going through.
And then I think of my doctors. The doctors who told me I couldn’t be helped. The doctors who sent me all over the place without even caring about anything other than the numbers on my charts.
My doctor who suggested I take an antidepressant or an anxiety medication when I asked her where I should start regarding applying for disability. Something so incredibly serious was diminished to me overthinking it and doing “too much”…
And then all my doctors who wouldn’t drop the optimism. The doctors who looked down on me when I said I was no longer working or attending school. I was accused of leeching off my parents. I was questioned as to when I’d put myself back out there. I was told my attempt to apply for disability wasn’t realistic because I wasn’t the type of person to be happy living off food stamps in some trailer for the rest of my life.
Why didn’t anyone ever care about the actual pain? Every last person was so caught up in everything except the pain and the legitimate impact on my life.
When I reached out to the mighty community I had grown so fond of, I was met with nothing but backlash. No one supported me. I was told by hundreds of people to not expect any sort of result. People made it clear that because I didn’t have a lawyer, my case wouldn’t go through. I was told to expect rejection multiple times.
Because on the outside, that smiling slightly sun-kissed picture of me, shows that I’m just as healthy as the next person.
Regardless, I spent the hours upon hours filling out the application.
I spent even longer creating my follow up 11 page paper to answer their “brief” headache and migraine questionnaire. I had to show how this condition impacted every aspect of my life.
This was done on my birthday weekend. And in tears, I added in this brief conclusion:
My routines don’t involve friends and family and regular activities, as events like going out to dinner, going to see a movie, or attending a concert are not activities my condition allows me to participate in. I lack any remnants of a social life, and spend my days rotating between lying in bed and sitting on the couch. The routines that exist in my life revolve around doctor’s appointments, therapy appointments, and self-care, as working to find a way to manage my migraines, is the only relevant aspect of my life. This is often the hardest aspect of migraines to accept.
I remember receiving a follow up call at the end of November. The doctor reviewing my case wanted to check in on how I was responding to Aimovig. I could feel her jaw just drop as I described the side effects that pushed me to discontinue the medication. When the small amount of questions were through, the lady noted that there was one more question. Somewhere I had mentioned the complete cancellation of all birthday plans. The doctor had a non-case related question, she wanted to know if I’d ever managed to have a “make-up brunch” to celebrate my birthday.
I told her there’s bound to be other birthdays, but my current condition doesn’t allow me to do such things.
A month later, I had my approval letter in hand.
So now I have a label. One that I haven’t come to terms with and probably never will.
I am disabled.
So what? What does that even mean?
If I leave my house and I’ve managed to dress up and look presentable, you wouldn’t understand my status.
But, most days, I can’t drive. If I take my meds, I’m a danger if I were to operate a vehicle. If I’m feeling okay, there isn’t a guarantee that I won’t get halfway to my destination to be met with the realization that my depth perception is gone.
I can’t do what I love. I bought the paint. I sketched out the mural. After 5 minutes I was absolutely done. The fumes were too much. I hid in another room while my mom painted. For two days straight.
I will never be able to go back and work in interior design. There’s no way to avoid fresh paint in that field.
I don’t even know if I’ll be able to handle the beautiful paint by numbers I got as a Christmas present.
I can’t go someplace unfamiliar. Unless there’s an absolute guarantee that you have dim lighting, and no smells – candles, weed, cigarette smoke, dirty laundry, cat litter, cologne – and access to water/plain food in case I am hit with a painful migraine that won’t allow me to get home… I can’t go. So I won’t.
I can’t set goals. How could I sit here and say, I want to enroll in classes and start going back to school part time this year, when half of this week I didn’t have the strength to pull myself out of bed? Right now, there isn’t a future. There isn’t a plan. There can’t be. Because I’ve been crushed enough with watching my dreams dissipate.
The list goes on and on.
Yet somehow, I’m still being told to get peppermint oil. To buy some CBD oil. To just do this. To just do that.
That I need to get out more. That I should travel. That people are disappointed that I don’t come to visit. Or that I’m no where to be found when they visit.
I’m starting this year lost. There is no direction.
There is only memories of all that I used to do. Everything I’ve pushed through for so long. And constant reminders of all that I cannot do.
This is being disabled. And I don’t need a wheelchair to make it any more real.