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.

POTS, Not Pans

Part of my hesitance in going to the doctor is because I don’t want any more diagnoses. I feel like I have enough. Hell, even disability forms have spaces for 10 diagnoses, and I had already exceeded that. I don’t want any more diagnoses. I don’t need any more problems.

As much improvement as I’ve made in seeking out medical help, as soon as the possibility of something more comes up, I push it so far back into purposeful forgetfulness in the hope that it will never come up again. I did it last month when I attended a COPD support group. The respiratory specialist pulled me aside after group, asked me a few questions about my history, and recommended I come back to be tested for Cystic Fibrosis. She seemed concerned. I told her I would come back; I never did.

It’s a lot easier to forget shit when it doesn’t affect you every day. I’ve had breathing issues most of my life. I’m used to it.

What I’m not used to is passing out onto the floor. That I can’t forget. The concussions. The bruises. The people who have to surround me when I get up because they all know I’m going to end up on the ground unless they catch me. The very thing that led to me losing my job.

I thought I had answers, at least in part. Clearly something was off with my heart rhythm. They said it was an arrhythmia. They just couldn’t tell me which one. That’s why I had the cardiac implant. It was going to tell me what was wrong with my heart.

So when I went to my cardiologist appointment on Tuesday, I was fully expecting a simple answer. Just tell me what arrhythmia it is. Just tell me how we can fix it. I need to work again. I need to be normal.

But that’s not how the appointment turned out. The doctor scanned through the information from my monitor. I had the PACs and PVCs as suspected. He could have prescribed a beta blocker to help regulate my rhythm, but because of my age, he thought the risks were greater than the benefits. But even with that, the irregularities weren’t enough to cause my consistent passing out.

The cardiologist sat there and started to tell me there was nothing left that he could do, that he ran all of the tests he could and none of them could fully explain my symptoms. He brought up seeing a neurologist to rule out seizures, but I knew these weren’t seizures. I knew that something was wrong. But I felt defeated. All I could say was okay.

But my friend is not like me. She was not about to back down and say okay and leave my doctor’s office without any real answers. And I think the doctor realized that. So he brought up more things, some fancy words, but still nothing concrete. He mentioned something about blood pressure, and I told him well that’s complicated in itself. He asked me to explain. I reminded him that’s what led me back to him in the first place, when the PHP program found an irregularity in my blood pressure — high in one arm, low in the other. Drastically low at times.

Something must have clicked in my doctor’s mind, because he told us to follow him to his office. He pulled up my records on his computer. And the more my friend described what was happening to me, the more firm he felt in his belief about the diagnosis.

I have POTS: Postural Orthostatic Tachycardia Syndrome. It explains why my heart rate can go from the 30s to the 130s in a matter of minutes just from moving. It explains why I pass out when I stand up, or after I’ve been sitting down for a long time. It explains why my head gets so foggy sometimes out of nowhere. It explains why my blood pressure changes so drastically. POTS explains that all.

I got an answer. A diagnosis. But it’s not an easy one. In reality, I would rather my issue just have been an arrhythmia. They are easy to fix. Simple. POTS isn’t so simple. POTS isn’t so easy to fix. And when you really start to look into it, it’s only a piece of a much larger puzzle. Because POTS is never just POTS. POTS is a part of a larger problem.

POTS is one form of Dysautonomia. A big word, but basically it’s the dysfunction of the autonomic nervous system, which controls all of the automatic processes in the body: heart rate, blood pressure, breathing, digestion, and temperature control. It’s also the system responsible for the fight-or-flight response. The system that’s been overworked since I’ve been born.

So much makes sense now, and not just the passing out. People with Dysautonomia can have problems with malnutrition. They can have trouble regulating their temperature. It explains why I always end up vitamin and protein deficient even when I’m eating right. It explains why I can’t feel temperatures like everyone else can, why I don’t realize when it’s too hot or too cold. It explains why I can’t always feel pain when something is hurt, and when I don’t realize I am sick when I’m really sick. The system that’s responsible for the basic necessities of life is broken.

There’s no direct link between Dysautonomia and trauma, but I can’t help but think that there’s a connection. The very system that plays a role in the body’s response to trauma is the same system affected by these conditions.

Maybe the autonomic nervous system is like a car. A car only lasts for a certain amount of mileage before it starts to break down; that’s how it’s designed. If you drive it a lot, it’s going to break down faster.

What if that’s how the ANS was designed? Maybe it’s supposed to last a good 80 years of regular use. But when it’s overused, when trauma happens and it’s constantly activated for years and years, it breaks down faster. Because the human body wasn’t designed to endure consistent trauma. It’s why trauma survivors rarely suffer from just the psychological effects of what happened to them. There’s physical damage, too.

It frustrates me in more ways than one. Another diagnosis, and one that I can’t ignore. And even though there are things I have to do now — take medication, increase my salt and fluids, wear compression socks to push the blood back to my heart — it’s not a cure. I’m still going to pass out. I’m still going to be affected. It’s another disabling condition.

I sat in my cardiologist’s office in wavering denial. My friend asked him about my ability to work, how no one wants to employ someone who’s going to pass out like I do. She asked him straight out if I could work, and he wouldn’t give a straight answer. He circled around to talking about keeping myself safe. He wouldn’t tell me what I really wanted to hear.

It’s another diagnosis I didn’t need.

Fired (Up)

I came home Monday afternoon expecting to enjoy the rest of the day — the anniversary of my freedom.

I checked the mail and saw a letter from my employer. I opened it. There was a piece of paper with my name and information on it, with directions for filing for unemployment, with a permanent separation date of June 6th.

I never quit my job. I wanted to go back as soon as I could. I never wanted to be out in the first place. When I passed out at work that day, the manager told me I would not be able to come back until I had medical clearance in writing. I told her it was going to take me awhile to get it, and she said that was okay — that my health was first priority. And I have been trying ever since to get a note, but because of my history of heart issues and fainting, no one wanted to take on the liability and told me I needed to see my cardiologist.

So I planned to wait until my next appointment, which was then cancelled because my cardiologist decided to leave the practice on short notice. I rescheduled with my original cardiologist, but the earliest appointment I could get was July 11th. Fine. I figured everything was okay because my manager told me to take all the time I needed.

When I got that letter, I didn’t understand what happened. No one contacted me before this. No letter, no phone call, no e-mail, nothing. As far as I knew, everything was still okay. I had no idea I was going to be let go. I never lost a job before — not like this.

It was hard enough for me to leave the job I had for nearly two years, the job I got just weeks after running away. But that was a choice I made in order to have a better, safer life — and a place to live. I was in control.

But this was not in my control. This was not a choice to leave. This was being fired. Through the mail. On the day I was supposed to be celebrating my freedom.

I tried to suppress my emotions, I tried to push it in the back of my mind, to try to think about it another day. But that didn’t work out so well, because I ended up in tears. I was angry, frustrated, and upset. What did I do wrong? I didn’t abandon my job. I was good at it. I performed well even in the few weeks that I was there. And I did everything I could to try to get back, and I was still trying. But it wasn’t enough.

I felt like a failure. I can’t keep a job. I can’t even keep myself upright. How am I supposed to get another job? How am I going to pay my bills? No one wants to hire someone who was fired, and surely no one wants to hire someone who passes out frequently. Not disabled enough for disability, but not able enough to work. It’s occupational entrapment.

I managed to stop crying for a little while, but any chance of enjoying the rest of the day was gone. I made it through dinner, but then I felt the same emotions coming back. I went outside. I wanted to badly to run away, to take my cigarettes and smoke my feelings into numbness.

And it took everything in me not to do that, because I knew it wasn’t going to solve anything. I knew it was going to affect other people, and affect me. So I sat with my emotions and a bottle of beer. I let myself cry. I let myself be angry.

Then I looked up at the sky. I watched the fireflies fly. I watched the neighbor’s dog waddle through his yard. I looked around me. Peaceful. Quiet. Freedom. For 29 years, the only way I could watch the sky was through my bedroom window. But that wasn’t my life anymore. This was my life. Full of feelings and losses, but also full of fresh air, fireflies, and the freedom to see life from the outside, instead of inside my window.

I was still upset, still angry, but it no longer overwhelmed me. I came back inside. I sat on the couch and watched TV. I ended up falling asleep there, with one dog sleeping behind my head and another sleeping right at my side. And I couldn’t imagine life any other way. Safety, a family, friends, a home, dogs, and freedom.

I’ll figure out the rest, somehow, some way.

Purposeless

Stability outside, chaos inside. That is what my life is right now. And saying stability outside may even be a bit of a stretch. But I guess for those who don’t really know me (and even some who do), I appear stable.

I’m not at all stable. I barely know what day of the week it is anymore. I haven’t paid any of my bills this month. I don’t even know why. It’s not like I have a legitimate excuse. I’m not even working. I’m just existing.

I am useless, and not for lack of trying. I tried to get my regular doctor to write a note for me to return to work. Bad idea. It took an hour for me to even get her to consider writing me a prescription for an antiobiotic. An antibiotic. Not a narcotic. I’m just asking for some penicillin, because I clearly have an infection in my lungs that was not going away with steroids alone. And she even agreed. That’s the best part. She knew I needed medication, but told me in fancier words that I was too complicated to treat, between the COPD and my heart condition. I was lucky I got a Z-Pak; getting a note would have clearly just been too much.

So I told myself I’d wait. Just another week, and I can see my cardiologist and she’ll write me that note, she’ll clear me for work. And then I get a call four days before my appointment, with a voicemail that said my cardiologist has resigned and my appointment has been cancelled. The woman on the phone said it like it was no big deal. Even added in the have a nice day. This cardiologist performed my surgery. My cardiac monitor is subscribed to her name. She was a specialist. She was the first one to legitimize my concerns. What in the fuck am I supposed to do now?

I called the office back. I told them I was out of work. I told them I had been in the hospital several times since my surgery and needed to be seen. She told me I could see my old cardiologist, the one that always assumed my heart issues were really just the aftereffects of cocaine abuse and a possible seizure disorder, completely dismissive of anything cardiac despite everyone else telling me my heart is not beating right. Fine. I have no other choice. I’ll take him.

Great. Now let’s get an appointment. Well, he doesn’t have any openings until next month. Are you fucking kidding me? My surgery was in May and I haven’t even had a post-op appointment yet. I have stitches hanging out of my chest that I have tried my hardest not to pull out myself. I am out of work because, understandably, who the fuck wants to be liable for someone working who passes out consistently. But let’s just give it another month. Fine. Because I really have no other choice.

It’s frustrating. I want to scream and cry, but instead all I do is bury it down and put on a smile. I’m good at that. Hide the anger, hide the pain. I hide my tears, too, until I can’t hold them in anymore. Then I run. Out of the house. A few blocks away. And I sit on a bench and cry. And I smoke a cigarette until the pain goes away. I tell myself I’ll smoke just one more, and then it’ll all be fine. That’s what I’ve done my whole life. Just one more line, just one more drink, just one more pill. But it’s never fine. It’s not now, and it never was in the past. Yet I still keep trying. It’s how I ended up on a bench in the middle of a thunderstorm, soaking wet, with an empty pack of cigarettes, wondering why I couldn’t breathe.

I am a mess. Not wanting to die, but not caring if I exist. Because I feel purposeless.

People tell me my intelligence, my grad school work gives me purpose, but it doesn’t to me. I just finished a year of graduate school and maintained a 4.0 GPA, but it just doesn’t matter to me. I didn’t put forth any effort. I didn’t study. Hell, I took my last final drunk and started and finished my final project in the hour before it was due, and I still managed to pull 100s. That is not effort. That is not purpose. That just is.

My intelligence does not give me purpose. If anything, it only causes me more pain. Knowledge hurts. Because I know how to fix the damage in others, yet I can’t seem to fix the brokenness within myself. If I didn’t know any better, it wouldn’t bother me as much. I’d just be broken.

How can I plan for a future when I don’t even know what’s happening now? There are things I’ve accepted. I won’t have a family. I won’t live as long as planned. I am sick, and I will be sick for the rest of my life. But how can I plan around that?

I dreamed of being a therapist because I wanted to help people in ways I wished people helped me, I wanted to make a difference. But that dream isn’t realistic now. I can’t be a therapist with DID. I know they exist, but they have to exist in hiding. Because the world will never accept them.

I don’t know how to make a difference outside of that. I can’t stop every child abuser. I can’t make people understand that mothers abuse their children, too. I can’t get people to open their eyes to truths they don’t want to see. So what is my purpose?

Beyond housework, I am nothing right now. I keep busy as much as I can. I wash the dishes. I do the laundry. I sweep the floors, vacuum the rug, take care of the dogs. But in the moments where there’s no more laundry, there’s nothing left to clean, and the dogs are asleep…those are the moments that scare me. Those are the moments I hear my mother’s voice, telling me I am nothing, that I am a burden.

Those are the moments I sit and realize that I am purposeless.