disability

Work(in)ability

~ KJ ~ 2 Comments

After an incredible amount of time and frustration, I was finally able to get a copy of my birth certificate, which then gave me the ability to get a valid ID so I could get a job. While my writing work pays, it’s definitely nowhere near enough to live on.

I was scared but excited to start work again. I haven’t really been in the workforce since I got my cardiac implant surgery a year and a half ago. I’ve missed that sense of purpose. I’ve missed that feeling of normalcy, of being a capable, competent adult.

I had almost forgotten — or purposefully chosen not to remember — what work was like for me in the few months before it had ended. Things had gone downhill. It wasn’t from the knee injury that left me on crutches. It was all of the mysterious issues that started wreaking havoc shortly after I was hospitalized with the flu. When I started passing out for no reason. When I started using a wheelchair because I was getting too tired at work. When I fell off the front porch because I passed out while closing the door on my way to work one morning, scraping the entire side of my face.

This was going to be different. This job was going to be easy. No one would have to worry about me. No one would have to know I’m sick. I didn’t tell them anything during my interview. Why would I? No one is going to knowingly hire someone with my medical issues. I look normal on the outside. Capable. Healthy.

I breezed through orientation like it was nothing. I started taking care of guests like I had been working there for months. It got slow for a bit, so a few of us were talking. Somehow random math problems came up, and I solved them in my head. It then came up why I was working there if I was so smart. I didn’t go into too much detail, just that I got sick awhile back and had to take a break. I saw it as an opening to say, very light-heartedly, that if I ever pass out, not to call 911, that I’ll be fine and up in a few minutes. It’s become an annoyance when I pass out in public and they call 911, only for the hospital to try to keep me for observation when I know they are not going to find out anything I don’t already know.

To my relief, her reaction was calm. She said it was good that they know so they can be prepared in case anything happens. I didn’t feel any shame in that moment. I felt okay.

It wasn’t until yesterday, my first full shift of work, when I realized that my abilities are not what they used to be. Fifteen minutes into my shift and I was already short of breath. I could feel my heart racing, which only made it harder to breathe. I wasn’t even doing anything but walking up and down a few stairs and walking across aisles. That was it. My heart rate tripled like I was running a race and would not slow down. My coworker kept asking if I was okay. I know he must have seen it in my face.

Five hours in, and all I had gotten was two minutes to sit on the toilet and pee. I was burned out. I could barely lift mats to clean. I felt weak. I felt sick. I felt useless.

I cried as soon as I left, and again as soon as I got home. I’ve been crying off and on today. I used to be able to do everything. I unloaded trucks. I moved furniture. I lifted grills. I did anything my male coworkers could do. I could work from opening until closing. I had energy. I had strength. My heart was functioning. I was okay.

And now I struggle with everything.

But no one notices. And if they do I immediately push them away. I refuse to use a walker or a wheelchair. Because I don’t want people to see.

I’m tired. I’m tired of walking out of my house and hurrying to find the nearest bench because I’m so dizzy I’m afraid I’m going to pass out. I’m tired of laying on the floors of public restrooms just to avoid a big scene. I’m tired of needing clothes in multiple sizes because I don’t know how long it’s going to be before my digestive system starts working again. I’m tired of not being able to do my school work because my mind is so foggy I can’t think. I’m tired of mopping my bedroom floor every other day because I’m rapidly losing the ability to control my bladder.

I’m tired of the medications, the hospital stays, the doctors’ visits, the specialists.

I’m tired of the loneliness. Everyone else I knew is out living their lives with their families, advancing their careers, having babies. I’m struggling just to get out of bed.

Dysfunctional function

~ KJ ~ 8 Comments

I’ve been going through the process of applying for disability.

I started the application in June, but hesitated finishing it because I had a lot of self-doubt. There was some fear in being rejected. There was a lot shame in needing help. I told myself I just wasn’t trying hard enough. I told myself I didn’t need this help, I just needed to be stronger.

I struggle with asking for help in general, but when it comes to finances, it’s even more difficult. My parents were not rich, but my father had a well-paying job that should have allowed us to live comfortably. My mother was irresponsible, and wasted money on material bullshit instead of paying the bills. She always had the newest phones, but could not pay the wireless bill. She had an abnormal abundance of home decor, but could not pay the electric bill. She’d guilt people into paying her bills. She used other people as a means of financial support, and I always hated that.

And I feel like I am doing the same thing by trying to get financial assistance. I feel like I am in some way able to do more than I am doing, that I’m just putting my money into the wrong things, just like my mother had done.

But I’m not. I’m putting my money into all the right things. I pay my rent every month. I pay all of my bills, even if it’s just the minimum payment. I pay my therapist every week. I’m not irresponsible at all. I’m not like my mother. But it’s still not enough. I am still not worthy.

I tried to work more. It lasted all of four days. I can only handle so much in one day before I get completely exhausted. I wish I could work full-time, but I know it would be disastrous; not only for me, but for those who would be working with me. Three hours into the day, and I’m already emotionally spent. Five hours into the day, and I’m already physically exhausted.

But I’m still working. I’m still earning a paycheck. And I am afraid that alone will get me rejected. They don’t understand that my paycheck doesn’t even cover all the basic necessities. They’re not there some months when I have to figure out how to get enough food to eat with $15. They don’t see the times I had to pay my rent with cash advances. They don’t know how much I sacrifice just to pay for therapy.

They will think I’m too able to be disabled, that I function too well to deserve any help. But they don’t see the dysfunction in my function.

They are not with me every morning when I can barely make it out of bed to take a shower. They are not there with me each morning I walk to the bus stop in tears because I’m so depressed and lost and scared of life. They do not see the panic attacks I go through at work, all the times I cry in the bathroom, and the multiple emotional meltdowns I have in front of my coworkers.

They don’t see how sick I can get just from eating a meal. They don’t see me struggling to breathe, or throwing up in the parking lot because there’s just not enough room in my chest for me to breathe if my stomach is full. They can’t feel my constant nausea. They don’t know what it’s like to walk around with an invisible elephant on your chest.

They don’t see me crying on the bus on the way home because I’m just so exhausted. They don’t know how many meals I skip, because I’m either too tired to eat or I just don’t care enough to be nourished. They’re not there every time I get dizzy, every time I pass out because my body is constantly running on fumes.

They’re not with me every night when I spend hours laying in bed, just wishing for a decent night of sleep. They don’t know how many times I am startled awake by the cat downstairs, or a car down the street. They can’t see the nightmares that keep me awake through the night. They can’t see how exhausted I am every day, how much I struggle just to hold my head up.

They can’t see my flashbacks. They can’t feel my body memories. They don’t hear the voices I hear in my head every day, or the noise that seems to get louder and louder. They don’t feel the fear I experience every day of my life. They don’t know how badly I just want to die. They don’t understand how much effort it takes just for me to have a conversation with somebody.

They can’t see the depression, the anxiety, the fear and the panic that runs through my mind and body every single hour of every day. They don’t see the wounds I hide under my clothes, or the pain I try to bury away so I can make it through another day. They don’t understand how many times I should have been in a hospital, but couldn’t afford to be out of work. They don’t know how many moments I’ve lost because I can’t handle the stress, so I dissociate.

They don’t see any of that. All they can see is a person who is able, the same as everyone else sees. She works, she is not disabled. But they don’t realize that any other job would have fired me. They don’t see how much this life is destroying me.

In a way, my resilience is my downfall. It makes me people think I am much better than I really am.

I am shattered glass inside of a shatter-proof box. No one can see the catastrophe that exists inside, because they only focus on what they see on the outside.

I am true dysfunction, hidden by perceivable function.

The return home, Part 2

~ KJ ~ 4 Comments

My therapist knew exactly where I was in my mind. She knew I had reached the point of hopelessness. She also knew the danger that returning to my home of origin would put me in, a danger that I could not see because my mind was so focused on giving up.

My therapist talked about other options. She realized that half my battle was financial, something I had been not-so-upfront with in the past. That is when she brought up going on disability. I’ve never been on any type of government assistance, because I feared it would mean I was a leech like my parents, constantly depending on others to get by. Also, with SSDI, that would make my diagnoses real, and part of me still lives on in denial.

I promised my therapist I would look into it, even though I really didn’t want to go that route. I told her it wouldn’t matter anyway, because it takes months to process, and that is even if I am approved, which is unlikely the first time around. Then my therapist brought up cutting our sessions down to once a week to save money, and I started to panic. I can barely handle myself right now; I cannot imagine going to therapy just once a week.

Then she brought up seeing another therapist, one that is covered by my insurance. That was even more horrifying than cutting therapy down to once a week. I’ve been in an out of therapy for 15 years, and the last few years were some of the worst because Medicaid makes it near impossible to find competent mental health treatment. I was not about to go through all of that again. I might as well just treat myself.

Then reality hit again. “Ethically, I can’t continue to take your money and treat you, knowing that you may end up homeless.”

I sort of knew this already, but I didn’t want to accept it. The main reason I moved to this particular area was because I needed help, and I knew I could get it from her. I started therapy within a week of moving here, before I even got a job. Therapy was, and has been, my priority. And now I felt like I was losing that, too.

I didn’t want to think about it then. I had to get myself back on track. I needed to remember why I was traveling, that I was going to take an exam that was going to better our lives.

I went home after therapy and started packing my bags. I had a list written out of everything I needed. I obsessively checked and re-checked everything. By the time I was done, I was so exhausted that I just went to bed, but I didn’t sleep much because my mind was still racing with anxiety.

I got up at my usual 4:30 time, took a shower, packed my last-minute things, and went to work. I was hoping for a rather uneventful morning, but that proved to be false hope. Instead, I got another realization that some of the people and things I held hope in were no good. The thought of going back home to my parents reemerged in my mind. I reached hopelessness again.

I tried to fight back, but at that point everything was chaos. I wanted to quit my job and never come back. What was the point anymore? No family, no more therapy, no money, no life. The life I was building here was fading away fast. I didn’t know what I was going to do.

Part of me was afraid to make the trip at all, knowing that I was risking throwing myself into the lion’s den. Part of me had given up entirely. And another part of me knew we needed to take this test, and there was no other way to get there.

With Courage and Superbear right alongside me, I went to the train station after work and caught the train back to my home of origin, still struggling through the mush of possibilities in my mind.