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.