Work(in)ability

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.

Pretzels

I don’t have much energy lately.

Not that I ever had a remotely normal amount of energy in the last several years, but I am probably at my lowest energy-wise.

I’m doing my best to not stay in bed all day. I go out, even if it’s just for a few hours. I’ll ride the bus around, sit on a bench somewhere and just people watch, or window shop at the mall. Then I get tired and venture my way back home. I don’t get much done. I’ve barely made a dent in my thesis. I don’t write much anymore. I’m just tired.

Then throw in the added frustration of chronic illness. I can’t even count how many times I’ve had to bite my tongue the last couple of months. People comment on my appearance asking me if I am pregnant, which is especially difficult considering that I was pregnant around this time last year. Then I’ve had other people say outright that I’ve gained a lot of weight, and others suggesting diet plans and even fasting for one week. Completely. Unsolicited. Advice.

Instead of cursing them out like I want to, I just nod or change the subject. I know engaging with them will only ignite my emotions, and I’ve been doing really well keeping them under control, considering everything. But it gets frustrating when it comes up so much.

It’s even more frustrating because I can’t help it. My autonomic dysfunction has spread to my digestive system full force. I had mild problems before, but it has gotten severe over the past few months. I’ve stopped going to the bathroom for weeks at a time. That’s what causes me to look pregnant, because all the weight is in my belly. And I can feel it all there. It’s uncomfortable as fuck. So is the nausea and the reflux and everything that comes along with it.

But it’s not like I can pray for poop, either. Because my digestive system knows no middle ground. It is either paralyzed or on speed and dumping out everything like it’s toxic. I’ve had to wear diapers. This is my life now. I’m thirty-fucking-two.

There’s not many foods I can eat anymore. No dairy. No cheese. No fruits. No meat. No to most veggies. No corn. No chocolate. Nothing high in fiber. Nothing spicy. I’m lucky if I can handle one small meal a day, and it’s usually pretzels. I’m living on pretzels. I’ve been using liquid supplements, but they’re expensive and I can’t keep that up for long.

I see a specialist — a GI doctor with experience in autonomic dysfunction. But it’s not like there is much that can be done aside from what I’ve done already. There’s no medication for this shit, no reset button for my brain. So I’ve just been dealing.

I’m just getting tired of pretzels.

YOLO

I’ve wanted a tattoo for a quite a few years. Every time I planned to get one, I ended up not following through because I couldn’t settle on what to get. I wanted a Phoenix, because if it’s significance in rising from the ashes. But it would have to be a reasonably sized tattoo, and I wasn’t sure I could handle something that intricate on my first go.

I thought about getting a butterfly. Once again, for its significance and relation to growth. But butterfly tattoos had gained popularity, and I didn’t want the meaning to get lost in the hype. But I always wanted something to symbolize my freedom.

Then when I got sick, I was told tattoos were a no go. Too much risk of infection, I assume. So I didn’t think about it for awhile, until the other day. I filled out a short get-to-know-you thing out of boredom. One of the questions asked about tattoos, and I wrote no. When my friend saw it, she said we should go and get my tattoo. Admittedly, we were both overly tired and I was not in the best frame of mind. But when I thought about it the next day, I really wanted to do it.

I’ve had to avoid so many things in my life. Can’t get vaccines anymore because my body isn’t strong enough to fight them. Can’t eat high-risk foods, like raw vegetables, because any contamination can make me sick. Can’t be around anyone who may be sick.

But what’s the point if I still get sick anyway? I can’t live in a bubble. I can’t avoid everything that will hurt me. So why deprive myself of something I wanted just because it might make me sick?

Just a day before, I had gone to a buffet — Golden Corral to be exact. They don’t have those where I’m from, so I was a little excited when I saw one here. Buffets are not good for me — not only because of the higher risk of contamination, but because most of the foods there aren’t good for my GI Isaura. But I said fuck it, I want to go. And we did. And I suffered for it, as I expected. But even through the discomfort and pain, there was a sense of joy in doing something I wanted.

So I took another risk. Today, I got my first tattoo. It wasn’t anything ornate or fancy. I didn’t want to take too much of a risk.

I couldn’t think of a more meaningful tattoo. The date I ran away, and birds of freedom. It’s a constant reminder for me, in those times when I do want to give up, to remember how far I’ve come from where I was.

Replace

Some nights, when I find myself unable to sleep, I look up old classmates on Facebook. Most of them appear stable. They have successful careers. Many are married with several children. They’re doing things that 30-something year-olds should be doing.

It brings up feelings in me — but not feelings of envy, feelings of grief. I know there are some things I will never be able to have, some things I will never be able to be or to experience.

I didn’t get to have a childhood. I didn’t get to experience the freedom of the teenage years. I spent 29 years of my life in hell. And when I finally got out, I didn’t get to experience the life that I thought I would.

It’s not just the psychological shit. Trauma doesn’t go away just because the environment changes. I knew that would follow me wherever I went. But I wasn’t expecting all of the physical damage to hit me so fast.

I’ve spent the last month hobbling around on crutches. I’ve been in pain for a while. But when you’ve been through what I’ve been through, you learn to shake pain off and deal with it. That’s the safe way, right?

Except it wasn’t. By the time I ended up in the ER last month, my knee was already severely damaged. I had worn all of the cartilage away, to the point where bone was rubbing against bone every time my knee bent, causing pieces of my knee cap to chip away. They recommend a knee replacement. Another surgery.

People don’t understand why I won’t just get the surgery. What’s the big deal? It’s not about the surgery. It’s about everything. Every part of my body is damaged. I have problems that people my age don’t have. People my age aren’t hobbling around on crutches, getting body parts exchanged with metal substitutes. They aren’t sitting in support groups, surrounded by people 40 years older than they are.

Trauma changes people. Not just their minds, but their bodies, too. My emphysema — that isn’t just a fluke. It’s from living in a toxic environment. My heart problem, the dysfunction of my brain and my autonomic nervous system — that isn’t just bad luck. That’s from my brain having to constantly be in overdrive. The poorly healed fractures, the joint problems — that isn’t just the bad genetics of EDS. It’s the result of constant trauma to the body.

Constant reminders of what I went through, courtesy of my body. Constant reminders that I will never be a normal 30-something, just as I had never been a normal child, teenager, or 20-something. Loss after loss after loss.

I deal with the pain. No one really asks about it, so I don’t talk about it. Except for my therapist. He asks me every time we meet. And I brush it off. I tell him I’m used to the pain. Because in my head, I keep telling myself at least I’m not at home, at least I’m not being actively broken. Be grateful for that. In my head, pain is normal. In my head, pain is deserved.

If only they could fix my broken heart like they could fix my spine. Glue the broken pieces back together, then screw in some brackets to hold it in place. Good as new. No darkness any more.

If only they could fix my damaged mind like they could fix my knee. Take out all the broken pieces. Suck out all the bad memories. Take out the whole damn thing. Just replace it with something new, something stronger, something that can’t be damaged.

I’d give anything to erase what’s happened to me, to replace all of the damage that’s been done with parts that cannot be broken. Replace the memories with happy thoughts of what life could have been. Replace the pain with strength. But that’s a hope that can never be fulfilled.

When Reality Hits

For as long as I’ve spent in therapy (thousands of hours at this point), I can count on my fingers the number of difficult sessions I’ve had.

It’s not that my sessions don’t involve difficult topics. While most of my early therapy experiences focused on tackling surface issues unrelated to trauma, the last nearly three years have been all about my trauma. Even then, I found myself able to detach from emotions a lot of the time.

Just a week before this latest session, I told my therapist about an incident from my teenage years. I was triggered a few days prior when the dog had split her nail and bled on the carpet. It almost instantaneously led to a flashback from when I was stabbed in the abdomen and left the same marks. When it happened, I was lost in all the same emotions. I felt like it was happening all over again. But when I told my therapist about it, I was void of emotion. I didn’t cry. I didn’t feel anything.

I thought I could do the same thing in our next session. Don’t cry. Don’t feel. Just get it all over with. Instead I cried, and I felt more than I ever wanted to feel. I was unprepared for that.

My therapist was concerned. And I knew it wasn’t just her concern. It was the treatment team’s concern. And as much I tried to deny it, it was my concern, too. My symptoms were getting worse. Not only in the last week, but in the last few months. I had been getting increasingly lethargic. No matter how well I sleep, I’m exhausted. Some days, I can barely climb the stairs without feeling like my heart is going to explode. My legs and feet swell, the right side worse than the left. Some days, it feels like I’m dragging 100-pound weights on each leg. Just moving around puts my heart into overdrive. Several times I found myself leaving group because of chest pains.

It was other things, too. Signs of heart failure. I knew it all too well. I watched my father go through it. I didn’t want to watch myself go through it.

I couldn’t avoid it any longer. If you don’t make an appointment with your cardiologist by tomorrow morning, you cannot return to program. An ultimatum with no option for negotiation. A crisis I could no longer avoid.

This session was different. My therapist wasn’t softening reality at all. She wasn’t letting me get away with avoiding the pertinent shit in my life. Not this time.

You know what, yes, you likely do have heart failure. Not going to the doctor isn’t going to change that. She was right. But there’s a difference to me, in suspecting something to be true and then actually having it confirmed. The latter is unchangeable. At least with not knowing for sure, there is just enough room for a small possibility of change, a small chance of it not being true.

Yes, you’re going to be sick for the rest of your life. And I will never understand how that feels, how you feel. It’s frustrating. It makes me angry, for many reasons. I’ll never know what it’s like to feel normal, to not be sick, for just one day. But my mother knows that. She’s not suffering. She’s living longer than I will likely live, more healthy than I have ever been and will ever be. Where is the fairness in that? I lost the genetic lottery big time.

But it can be treated. Yes. Just like my emphysema is treated. Treated, but not cured. Another diagnosis to be added to the list. Another health issue I didn’t need in my 30s. Another illness I don’t deserve.

Is it just about not wanting the diagnosis, or is it more than that? Is it another indirect way to be suicidal? It’s like she knows me. The same reasons why I still smoke with emphysema. It kills me faster, and no one really sees it as a slow suicide; they just see it as being stupid. The longer my heart goes untreated, the sooner I’ll die. Why prolong a life that’s destined to be minimal?

I didn’t tell her that, of course. I told her it was just about the diagnosis. I thought that would put a stop to the difficult conversation, but she just shifted to something even more difficult: the purpose of my life.

You may very well never be able to work again. You may not be able to get through all the schooling you want to. She was direct, in a way she had never been before. We’ve always thrown around the idea that I could eventually start working again, that my heart condition would get better and I could be normal again. But that didn’t seem like a realistic option anymore, at least not in the sense that I wanted to be normal. As far as school goes, I missed the deadline for my doctorate application because I was inpatient when the application was due. So any plans I had for getting my doctorate next year went out the window. And maybe that was meant to be, since I can barely get through the last few courses I have for my masters. Not for lack of knowledge, but for lack of energy.

But maybe you were meant for something different. Maybe you can’t be a therapist, or go into research. But maybe you can help others in a different way. She read the letter I wrote to the hospital. Another example of my never-ending drive to correct wrongs. I told her about the director’s response, how they were going to look into how they can change. See, think about the people you’ve helped just by doing this. You may likely cause this hospital system to change their ways.

I knew she was right, but it still didn’t seem like enough. I needed more. Maybe you can start an organization. I told her I already did. I told her what my dream was for PAFPAC, what I wanted to do when I first started it. But then my health (mental and physical) took a turn and I haven’t had the energy to make it what I wanted it to be. You’re still helping people.

But not as many as I wanted. I admitted to her that my life goal was an impossible one, and that’s where I’ve gone wrong. I wanted to stop mothers from abusing their children; I wanted to prevent people from hurting. And I know, logically, that will never happen.

You can still affect change. You’ve already started. Your actions help people. Your writing helps people. You give a voice to those who can’t speak. You’re going to have really bad days. That’s inevitable. But some days, some days are going to be okay. And it’s those days that you can really be you.

The dreams I had when I first ran away are now gone. My hopes of being a professional, of living a long life, of helping the world, are just not possible. The universe has given me this life of constant struggles. It has taken away too much from me. I’m just not sure if what I am left with is enough for me.

Heartsick

I sat in the cardiologist’s office Tuesday afternoon, hoping for answers. I needed something better. I needed to hear him tell me that it was all wrong.

A couple of months ago, I stopped taking my heart medication. I didn’t tell anyone, because I knew they wouldn’t agree with my decision. But I had reached my limit. Not only had I gained over 30 pounds in less than a month, but I had become severely depressed, to the point of suicide. Admittedly, I am depressed without the medication — but this was profoundly different. After a week of stopping the medication, I lost half of the weight and felt considerably better.

I told the nurse at my program that I had stopped. I thought my evidence would be enough that she would agree with my decision. Except it wasn’t that easy. Because both she and I knew that without taking the medication, my cardiac symptoms would be worse — and they were.

I didn’t want to start the medication again. I called my cardiologist. I left a message with the doctor. Two weeks went by with no response. I called again. I told the assistant that my side effects were severe, and that I needed another option. My cardiologist got back to me later that day. You need that medication. There are no other options.

No other options. What kind of choice is that? Take the pill and find your fat(ter) self running into traffic, or don’t take the pill and feel dizzy all the time, but alive. I’m sure that is a lose/lose situation.

There was no room for discussion. I called back offering names of medications I had researched, but received no responses. I couldn’t even get an appointment until two months later. After three cancellations, I was fed up. And so were my supports.

I needed more answers. I skipped my last group therapy session to call as many cardiologists as I could, until I could find one that would take me on — and have an appointment available that was still in 2017.  I must have called at least a dozen numbers before I found one that was taking new patients. I made an appointment for a few weeks later.

It’s been so hard to treat my PTSD because most of the medications affect the heart. But my psychiatrist has been willing to work cautiously with medications. He wants to be able to work with my cardiologist so I can be treated the most effectively for both issues. And my cardiologist has been consistently unavailable, making it really difficult to move forward with anything.

As much as I wanted answers, I didn’t want to go to that appointment. I wanted to cancel. I wanted to pretend everything was okay, and that I didn’t need any heart doctor. But it wasn’t just me that was waiting on this appointment. It was my therapist, my psychiatrist, the nurse, and my supports. Because they wanted answers, too.

And they were concerned. My last few x-rays showed cardiomegaly. I had avoided dealing with it, but when the nurse at my program found out, she said I needed to tell the doctor. I knew what cardiomegaly was. I knew it all too well. My father had it. It led to his congestive heart failure, which led to his death. I knew it wasn’t something I should brush off. I knew I also had other symptoms that fit under CHF. They knew I had those symptoms, too, which is why they told me I needed to tell the new cardiologist as soon as I saw him.

But I was so afraid. Afraid of having something else to deal with. Afraid of another diagnosis. Afraid that this somehow meant that I was just like my father, that I had his heart. And if I had his heart, I must be like him in every way. And that’s not who I wanted to be. That’s not how I wanted to live or die.

I never had the records sent to the cardiologist. I didn’t want to deal with it. I really wanted to start fresh. I thought maybe I would I tell him. Maybe. We’ll see how it goes. Let me just deal with the medication issue first.

I didn’t tell him. I couldn’t. I found the words to tell him about my POTS and about the medication. I told him what my doctor said about my inability to work. And it took everything in me not to break down and cry on the floor when he told me the words I never wanted to hear. Your doctor is right. There really are no other options. It isn’t safe for you to work.

Once I heard those words, I knew I was done. I couldn’t handle anything more than I had already been handed. He explained why there was no other medication. He said he could tell me all of these other treatments that people came up with, but none of them work, none of them do what this medication does. I could drink all of the fluids and salt everything I eat and it still wouldn’t be enough. Yes, it will cause me to gain weight. And I think, over time, I could probably learn to deal with that. But I can’t learn to deal with wanting to die every day. That’s not a side effect I can tolerate for the rest of my life.

I wish there was an easy answer. I wish I didn’t have to take this medication. I wish I could go back to the way things were before all of this happened. But that’s not reality.