Scheduling Conflicts

When you suffer from any form of chronic illness, you can choose, or not choose, to see your life as a bunch of doctor’s appointments. I try not to, but lately…

Without insurance, I didn’t have to think about it. I only went when I had no other choice, and there are doctors I’m still paying off for the few emergencies/scares I did have. With insurance, I’m in high demand. It’s almost laughable. You get told how long the wait will be, only to have someone call and say “The doctor can see you tomorrow at three.” Good for the doctor, but I can’t make it because you didn’t even ask if I was available! It’s like having to turn down dates you’re not enthused about.

Tomorrow afternoon I have an appointment in Boston that I hope goes well. My conformation call is supposed to come in tonight. I still have lab work I’ve got to get done ASAP, an appointment to reschedule once the lab work comes back, and an appointment at the end of next month to “look forward to”. I have to call the neurologist’s office back, seeing as how I missed their call earlier today.

Going into appointments with new doctors is basically a meeting. You give a rundown of your medical history and then they give you their feedback. I’m not even certain I want anyone’s feedback at the moment, but sadly, I need it. Even though they will, in all likelihood, go over any notes from my previous doctors, they’re each going to make their own assessments. My new doctor said “Let’s start at square one and find out what’s wrong.” She even said “We’ll figure this out together.” I was speechless, because up until this point, I’ve received a lot of dismissal from the medical community.

I’ve done the guinea pig stage and I’d like to not return to it, and yet, I’ve agreed to lab work and will soon have to agree to a gamut of tests. MRIs, cat scans, x-rays, and G-d only knows what else some of these doctors will come up with. I honestly just want to write out a document about what I will and won’t agree to; “Here are my medical hard and soft limits.” (I’m being sarcastic.) However, I do feel like I’m agreeing to an alien probe. 😦

When my new primary care physician’s office did intake they asked me for an emergency contact. I responded that I don’t have one. It makes me sad, but it’s the truth. Yes, there are a few people I could ask, but I don’t trust them. I don’t actually trust anyone, except myself. Not when it pertains to medical decisions. In a worst case scenario, I’m pretty sure most of my family would pull the plug and then disappear to make sure no one ended up responsible for my funeral expenses. I’ve seen this happen in other families. A close family friend passed away. It took days for someone to find her, which is truly heartbreaking to me. Her cousin, with whom she was close to, identified her, but after that, the extremely rich family she came from wanted no part in arranging, or paying, for her funeral. The Jewish community stepped up and made sure she was given a proper service. It was the saddest thing I’d ever heard, and I’ve probably heard it all.

In my defense, I’ve decided to establish a living will and submit it to the local courthouse and each of my physicians. I can’t have people thinking they can make decisions for me when they would never be able to tell someone what my eye color is, or my blood type. It’s difficult, knowing I can’t really turn to anyone about this. My cousin did offer, but honestly, I do not think she is capable of making informed decisions on my behalf. She’s a wonderful person, but when it comes to things like this, you have to be able to act swiftly in the best interest of the other person. She isn’t capable of doing that, so why burden her?

I’ve been experiencing blackouts more and more these past few weeks. Getting over being sick (according to my doctor, the infections are gone and my lungs are good, but it’ll be a while until the cough fully goes away, I can no longer blame it on being sick or being exhausted, or the side effects of my medication; this is happening, this is real, and this is scary. I haven’t talked about it with anyone, not really. I’ve talked it with all of you. When I did tell someone about it and tried explaining that 2-6 hours of my life are simply erased most days, they started spouting off potential reasons for it, but there was no care or concern conveyed to me. I’d prefer to hear the neurologist tell me what they are, or aren’t. In fact, I just Googled their office and I’m very impressed by what their specialties are. They do most of the tests on-site, which is such a relief.

Navigating this shit alone is tough. It’s emotionally painful, but I have no choice. And I’m strong enough to deal with what the doctors have to say, even if I’m conflicted about certain things.

Overall, not being able to concentrate today on my novel-in-progress is upsetting. I decided that maybe I needed a break. After all, not many people reach the 600 page mark on a re-write. I should be proud of myself, but I’m not. I sit here, and I wonder “What the hell are you even doing?” and “Why do you bother?” Writing projects this big are, on occasion, mentally and emotionally overwhelming. If I trusted someone enough to talk about what my issues are, that would be great, but I don’t. So today, I feel stalled. I’m going to let it be, because what other choice do I really have?

Tomorrow is another day, and hopefully when I get home tomorrow night, I’ll have fresh material in my head and be able to add a few thousand words to my already insane word count.

In the meantime, I’m scheduled, conflicted, stressed, and would love a break.  I’ll get over it.

copyright © 2017 by Lisa Marino & Blackbird Serenity, LLC. ALL RIGHTS RESERVED.

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A Writer’s Most Powerful Weapon

“A writer’s most powerful weapon, his true strength, was his intuition, and regardless of whether he had any talent, if the critics combined to discredit an author’s nose for things, he would be reduced to a fearful creature who took a mistakenly guarded, absurdly cautious approach to his work, which would end up stifling his latent genius.” ―Félix J. Palma

A Broken, Pretty Mess

When I came home Wednesday afternoon, after being at the doctor’s office for HOURS (You know your doctor is good when EVERYONE wants to see her.), I didn’t realize how awful I felt.

I remember coming inside, hanging up my coat, taking in the mail, feeding Cat and Kitten a little earlier than usual, changing my clothes, washing my face multiple times (Turns out, vegan mascara really likes my lashes and doesn’t want to come off. For the record, I have NO IDEA why I chose to wear a full face of makeup to a doctor’s appointment. I looked like I was going on a date, minus false lashes, which I can’t apply to save my life. It looked subtle and clean when I applied it that morning. It wasn’t really a “full face” by Kardashian standards, but when I got home it was the exact opposite of subtle and clean. I stared at the mirror and said “Holy shit! Is this how I left the house?!” It had that “bombshell” look to it and that’s not what I was going for, obviously. I was genuinely appalled with my own idiocy.), eating salad, and suddenly I felt overwhelmingly AWFUL. I was in bed at exactly 7:05 PM, only waking up to hydrate. I somehow had the audacity to sleep over eleven hours. No medication, no influence, just pure exhaustion mixed with physical pain.

I feel broken. I realized that when a different doctor called me to have a discussion about what my needs are moving forward (my first referral to someone else for specific reasons). I heard myself explaining the summarized version of what has occurred to make me feel the way I do and as I eventually heard myself speaking, I wanted to crawl into a hole and die. It felt incredibly sad, depressing, and honestly, the list could go on forever. It slammed down on me like a tornado coming out of nowhere. I caught myself, mid-conversation, thinking “This is what your life has been like. Holy crap! You need a hug.” But a hug isn’t what I truly want or need. I want to come away from something someday and feel healed. I’m tired of being a broken, pretty mess. I’m sick of it, because it feels like I’m somehow reduced into victim mentality, and I don’t like that feeling. No one does. For the doctor’s assistant to meet me for the first time and say “We’re here for you and we care.” was overwhelmingly emotional for me. I have family and friends who NEVER say that to me. And by never, I mean NEVER.

Do you know what it’s like to never hear a kind word spoken to or about you? I do. For longer than I care to admit, I have been reduced to being one of three things “Pretty.”, Talented.”, or “Smart.” Occasionally someone will say I’m all three, but generally I only hear the one, and that could be from anyone interacting with me on any given day. It could be a perfect stranger thinking they’re paying me a compliment, and maybe they are, but it leaves me feeling reduced to three boxes, and nothing else.

The people closest to me (my friends) would probably say much nicer things and would not reduce me into a trinity of superficiality. A friend recently told me I was “super-smart and had so much depth that most people never even realize it’s there because they don’t look”. I remember hanging up the phone after that conversation and thinking “I’m glad someone gets me.” It’s a short list.

I was at the vet one day and a guy complimented me on my skin. I wasn’t expecting it. It was one of those “Wait, what?” moments. You had to be there. He went into great detail as he explained that my skin is so flawless, he could tell I never go in the sun, that I don’t drink or smoke, that I take really good care of it, and that I’ve never had anything done on a plastic surgery level. All of those observations are correct, but I look in the mirror and I do NOT see flawless anything, I jokingly replied, “It’s all smoke and mirrors.”, but his compliment was quite genuine, and the back and forth went on for about twenty minutes. It was one of the nicest compliments I’ve gotten, but it was also an observation verbalized. I told him I was going to take him everywhere with me from now on because he’d made my day, but that’s precisely how I felt; I hadn’t heard a kind word or a compliment in so long, I would have listened to any compliment, however genuine or not, because it wasn’t negative. I don’t live my life for compliments of any kind, I just try not to be a piece of crap. I sent my cousin a photo about a month ago and she said the same thing “Holy shit, your skin is flawless. Are you wearing makeup?” There are some very lovely, sweet, blind people in this world. I am CLUELESS as to what they see.

Have you ever been in so much physical, mental, or emotional pain (possibly all three) and simply not seen anything when you look in the mirror? You reach a point where you don’t look too closely, or you don’t look yourself in the eye because you’re hurting too much.

When I woke up Thursday morning, the first thing I thought was “You look like a broken, pretty mess.”, and it hurt to think that, even though it’s precisely how I feel inside. So now, I’ve boxed myself into a category that I don’t particularly like, but it is what it is.

Someone recently told me that I’m a great person because I embrace the imperfections that make me, me. I don’t see how that makes me a great person. Embracing your flaws and your ability to know when you’re fucked up doesn’t make you good or great, but it does make you human.

When people in your life who claim to love you constantly remind you that you’re a failure, it’s NOT acceptable to allow them to get away with it. When they blame you for things you had nothing to do with, or they turn their own internal issues onto you, you need to step back and say NO. It’s virtually impossible for you to single-handedly be responsible for other people’s issues. I don’t look at anyone and blame them for mine, because that’s inaccurate.

People get offended when I disengage, either by walking away so I don’t murder them or by remaining silent. Silence doesn’t mean I’m not listening or that I’m ignoring you, but it does mean I am not going to accept negativity. I’m not going to allow myself to be harmed by words that don’t hold a whole hell of a lot of truth, and I’m not going to allow myself to be hurt by anyone who is merely lashing out or placing blame because their first instinct is to place blame. If you have issues like that, hit a heavy bag at the gym for an hour, but don’t take your crap out on me. I’m enough of a mess, I don’t need your shit on top of it.

I spend a lot of time talking other people off of their emotional ledges. I can’t tell you the last time someone even made an effort to talk me down from one of mine. The most condescending thing you can say is “I’m sorry to hear that, sweetie.”, and then proceed to talk about yourself and nothing else. I could be bleeding out of an eyeball and I’m certain someone would try to one-up me with somehow being in more pain or dealing with something far more excruciating. I catch myself at times feeling extremely annoyed by that, and yet, people don’t correct themselves. They go around believing the world revolves around them. I genuinely have no idea how they function in society.

I’ve felt invisible for a long time, but I’ve reached that point where I’m starting to believe that only certain types of people can see me. From here on in, if a person cannot truly see me, then I don’t want to be around them. Plain and simple.

So for today, and possibly this entire week, I’ll remain a broken, pretty mess. I’ll write and I’ll struggle, and no one will even glance in my general direction. My hand to G-d, no one will fucking notice because no one gives a shit.

copyright © 2017 by Lisa Marino & Blackbird Serenity, LLC. ALL RIGHTS RESERVED.

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