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.

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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.