Ramblings of a ‘Rioded’ Mind

Avatar by @little_Corvus

Writing is so incredibly hard. Most days I don’t feel like I can do it well at all. It used to be something that I could do without much effort or thought. I could just string together a few sentences, and it would sound brilliant.  Or at least I thought it was brilliant. Now that I think about it though it was all probably crap. Oh! That right there, that self-deprecating thing I just did, that is a significant thing about writing that I hate. I end up thinking everything I write is total crap. Shit, I think this is crap. But it is just a blog post, so I shouldn’t be so hard on myself.

These last two weeks have been my hardest writing weeks this year. I got so behind on assignments, the weather just wouldn’t make up its damn mind, so my body decided to be an asshole and stop functioning. Then it seemed that everyone died in one week and I had to deal with all of that and my obligations. We finally get to this week, and everything seemed peachy, then I got strep throat, so I ended up in the ER for 9 hours drugged out of my minded and pumped up on steroids that I am still feeling now.  My chronically ill life tends to catch up with my professional life but never this catastrophically.  I think it is because I have never been this busy before.  I always wondered how do you become a working freelance writer if you are constantly sick? I don’t know many people who pull it off.

I worry I am one of those people who can’t quite keep up with the riggers that come along with this job. The deadlines, interviews, events, and coming up with a unique enough pitch that someone will want to publish. There is no other job that I can possibly do other than that of a writer. It’s really all I am good at and all that I am physically able to do, even though lately that seems to be contrary to the facts.

I think working with editors and fighting to get paid is something that takes the fun out of work at times. I should have to chase people down to pay me what I am owed and yet that is also apart of this freelance gig cause sometimes people will opt out of sending you the cash you were promised.

But instead of me complaining about how bogus freelancing can be I will talk about my absences from my own blog. I spend a ton of time writing for other magazines and websites that I have neglected my own space. That and I decided once I recovered from the two spine surgeries that I had, I would jump back into writing with such intensity that I haven’t had time until now to look at my site. But I am back, and I will try and write more here, and be more proactive on all my platforms.

I was thinking of using this space to start reviewing some music and doing some fun side work that I don’t get to do for the sites that I have been writing for. But that all depends if I can work out my schedule in a way that gives me time to rest and time to work in equal amounts. Cause with ME/CFS and Fibro resting is honestly the only thing that keeps my brain-fog at bay.  But I am sure none of you want to hear about that nonsense. I talk about it at length in so many articles and blog post that I feel like my disabilities are becoming something that completely defines me, and that isn’t what I want. They are a significant part of my life but not the controlling factor of everything.

Anyways what I wanted to talk about was how hard a time I have been having with writing and the disillusionment I have been feeling about the industry, but it all just meandered everywhere and ended nowhere. So I think that’s all the writing I can do tonight. Talk to you guys soon.

 

 

Me the night before my second spine surgery.

Shit Happens…

So I have had two spine surgeries within three months and I have been bed ridden six months out of this year I think.  I had been growing my hair out and I was even able to install faux locs, which looked so good. But the stress and the incredible, agonizing pain I was in made my Fibro flare up, which flared up the subsequent tactile allodynia, and made having hair hurt again. I couldn’t be in that much pain that I couldn’t control and then have the head pain which I could control. So I shaved my head again. So I’m back to being bald and lovely.

The Black Bibliophile Podcast Logo.

The Black Bibliophile Podcast Logo.

The cabin fever is intense at times. I haven’t been able to sit up for more than 3 minutes for six months. I lack the money to purchase a proper chair. I have been reading and trying to keep up with The Black Bibliophile Podcast. Which can be daunting at times because of all the formatting and research. My last two episodes have been me just talking about books and throwing my segments to the wind. I think this next episode I’ll try to get back to formatting as usual. I wanted to get back to writing also. I haven’t written a creative story in so long.

I have just been writing articles and think pieces. Which is fun but I want to get back to the science fiction stories I was so good at writing. Or at least thought I was good at. I finally finished my first zine it’s called The Cosmic Egg. It’s got all the poetry, short stories, and personal essays I’ve written in the past five years all in one 32 page booklet. I wanted to put it all together so I can move on from those stories and start new ones. It marks the end of one life and me starting another.

The Cosmic Egg Zine.

The Cosmic Egg Zine.

Financially we have hit a wall. The store is struggling because of the construction next door. This new building not only blocks the view of our apartment but it completely obscures the view of our shop from the street. So we have less foot traffic in the store. We wanted to move the location of the store but all our efforts were thwarted. We are young and so is our business. Many retail store front owners do not want to lease us their space.

So we might have to close for a month or so to find a new location for the store and to move into a new place ourselves.  It’s a lot.  All I can do is lay here and try to heal. I’m three weeks out of surgery. I can walk to the bathroom, walk up one flight of stairs (Slowly) and I can brush my teeth.  So it might be awhile until I can actually manage to help my business and household.

The world doesn’t stop. I can’t even attempt to describe my feelings on 45 and the chaos he is inciting. I’m just tired.

So look out for more zines and short stories. I’m going to try and keep the blog posts coming and keep anyone who cares updated on my life.

I Probably Need To Want Something Else…

I’m in pain but I am afraid to text the one friend who gets it cause I always text her about it. The emotional labor I constantly ask for has been building as my pain gets worst. So I don’t text her.

I want to ask my partner to make me something to eat cause it hurts to move but I know he has to watch the store, and he works full time. I don’t want to burden him more with my illness.

I want to post on twitter that this is the worst pain I’ve ever been in and that I don’t think I can take it. But I don’t want to be that girl that constantly whines on the internet about her chronic illness.

It’s not a good look.

I spend 21 hours a day alone in my room. I don’t see anyone, or talk to anyone. It could go like this for weeks, and sometimes it does.

The only human interaction I get is right before my partner and I go to bed.  We talk a little and then he has to sleep cause he has work in the morning.

I spend most of my day on my phone looking for a distraction from the pain. Or reading a book if the screen is too bright that day.

No one told me being sick was so lonely.  No one brought up that I would have to watch other people live their lives from a cell phone screen.

They never talk about it.

I feel like as the years go by and the more disabled and cut off from the world I become I just start to feel helpless.

I haven’t had sex in over a month. My partner is too tired. He’s gotten off in that time tho. even if I am in pain I still try to keep him “satisfied”. But I have to go on wanting. The only time I’m not in pain or aware of the shittiness that is my body is when I am having sex. Something to do with chemicals and adrenaline and science. For how ever long it lasts I get relief, and to feel like I am wanted.

Why is it ok for me to go on wanting?

I wish he could help me cope with my illness. I want there to be more hours in a day so we could spend time together.

I guess I want a lot of things. I want the pain to stop, I want my short term memory/memory to come back, I want to be able to walk without pain, I want to run my business, I want to not be jealous of all the people on my social media feeds. I want my partner to help take care of me more, and share the burden of my illness. I want to be more independent, I wish my surgery was successful.

I want to be able to say all these things and not feel like a burden.

There’s so much more I want to say, but to talk about my illness and symptoms would be to talk forever. There is literally no end to how each disease affects each individual part of my body.

I am an amalgamation of wants and wishes can’t be properly voiced.

Standing Up, For Yourself

I am standing in my store because it is physically too painful to sit. I have 5 herniated disks in my spine and one of my disks is pushing on a nerve that goes down from my butt to my right and left legs. The best way to describe the pain is, imagine the most painful charlie horse you’ve ever had, now imagine that no matter what you do it won’t stop cramping. This goes on for weeks and only gets worse. It’s a literal pain in the ass.

The pain is so bad that I can’t write any fiction. I can’t build worlds because the pain is all I can think about. I am falling behind in all of my duties because my leg constantly feels like it is being chainsawed off.  I go to doctors, they give me pills and stretches, and a recommendation for physical therapy.  I have had this back problem for 7 years. If pills and stretches were going to help I feel like they would have already.

My fiance and I went to see John Wick 2 this past weekend, I love Keanu Reeves, I’ve seen every movie he’s made and the John Wick series is by far my favorite. Sitting down for five minutes is absolute agony. That movie is around 2 hours long and the only way I could get through it was on a cocktail of muscle relaxers and pain killers.  I don’t want to be high all the time. I want to find a way to deal with the pain without medication. But at this point all of my doctors keep pushing medication at the problem and aren’t in any way concerned about fixing the issue. Like they say, there isn’t any money in a cure.

I’ve done injections, physical therapy, yoga, pilates, herbal remedies, acupuncture, and everything else under the sun and nothing helps. I was finally after years of being told I was too young reffered to a surgeon only to be pushed back into the physical therapy/ injections loop. It’s inferiating to be told what my body needs. I have no agency when I walk into the doctors office. I am told what I feel, how I feel it, and that I am basically being dramatic. Even though my X-Rays, MRI’s, and CT Scans say the problem is gradually getting worse and preventative measures are no longer working. But when I bring this up it is just me “not giving the system a chance”. The system has fucked me for my whole life. I have had to fight for every diagnosis, and every bit of mediocre care I have received.

But instead of you know, listening to me, the patient. I am stuck at 25 using mobility aids such as a cane and wheelchair, and in constant intense pain.  This last ER trip I was in the emergency room for 3 hours crying uncontrollably because of the pain. Only to be taken back and be told I should try losing weight ( I had lost 60 pounds prevoiously and immediately dislocated my spine, proving that the fat was possibly holding my back together. Like some kind of burrito fueled glue.) , I should try injections, this told me that the doctor didn’t read my chart but then began to treat me as if I was a drug addict. Like me wanting some kind of relief from the intense pain was a crime. I had to prove to him, in-between tearful gasps, that I  was an upstanding business owning citizen. To make him feel better about easing my pain. In what fucking world does a patient have to convince a “doctor” to do their damn job.

This is my life.

I now I have to schedule an appointment with my primary to be able to convince him to refer me to a neurosurgeon. I don’t understand why I have to negotiate with medical professionals to get help so I can live my life without being in an insane amount of pain. It’s absolutely ridiculous and completely exhausting.

 

Con Fatigue

Every time I go to any convention I know, I will physically pay for every conversation I have and every booth I visit. That’s the price when it comes to my disability. This latest Con, the Long Beach Comics Expo was a special one because we were able to participate in our first panel, but it is going to go down in my memory as the Con I didn’t use my wheelchair.

I am a part time wheelchair user. Now I know when some people hear “part-time” it brings up thoughts like; “If she only needs it part-time why does she use it at all?” or “She must be lazy.” I get this a lot as a person with an invisible illness, and as someone who needs mobility aids part-time. There is a stigma for guys like me who can walk short distances but do need the help of a wheelchair or cane, or any other device when moving about for extended periods of time.

Now with that said, at Long Beach Comic Expo I was unable to bring my current wheelchair because I had outgrown it. That’s just a fancy way of saying I got fat and couldn’t  squeeze into the chair, and can’t really afford a new one. So I decided I would just take my cane and make it work.

I was in so much pain that I couldn’t really think straight most of the time. I had to lean on my fiance, on random booths, and at one point I was slowly hunching forward, subconsciously trying to get some weight off of my back and legs, to alleviate the pain. I looked like Zorak from Space Ghost, using my hands to balance all my weight onto my collapsible cane.

The Convention was fantastic, the people I met were smart, fun, engaging, and I learned so much from the panel experience I had.  But my takeaway was the fact that there was literally nowhere to sit in the exhibition hall. Not a chair or a rest area for disabled people or older people, or just people who need a break from running booth to booth. Every spot to sit was either outside ( it was raining a lot of the time this weekend), the lobby entrance area of the Convention Center, or if you found a well-situated planter out front.

With every convention, I go to I am constantly reminded of how non-inclusive the experience is when it comes to disability. There are no rest points or well-placed signs for elevators,  and no quiet spaces for people who suffer from sensory overload. Now I was lucky enough to know individuals in artist alley who let me sit at their booth to rest. But it’s not entirely fair for those who don’t have that privilege.

Now I’ve heard arguments against this topic that go like “Then maybe you shouldn’t go to Conventions.” I shouldn’t have to forgo the things I love to do because of my disability and the organization’s inability to accommodate me. I think it is in the best interest of any major event to be as inclusive as possible. So whether or not I can fit my big ass into my wheelchair is irrelevant, because there should be suitable rest areas available to me.

It’s a topic that is always in the back of my mind when I enter any convention. It’s always a struggle when in 2017 it really shouldn’t be. But alas it is, and I am sitting here reaping the benefits of not having proper places to sit all weekend. My back is shot, I can’t walk, and I most likely will be spending part of my afternoon in the emergency waiting room.

This is the second time I have written about inaccessibility for disabled people at conventions (See SDCC article for BGN), and I will continue to share my experiences until I no longer have to.  Now with that, I need to lay down.