Years ago, I needed a bottle of essential oil to ward off the desert spiders that had invaded my former rental. I found it at a store that sold odd herbs, good luck charms, amulets, candles, things pertaining to black magic, and items usually used by fortune tellers, or psychics as they’re referred to nowadays. There had been a sign in the window that there were psychics available, but I really couldn’t justify spending money I didn’t have on an unproven science, although I was curious.
So, I perused the hamsas and evil eyes after I grabbed my oil and then a woman with wild, blonde, curly hair came out from somewhere and looked at me and then started to talk. She had noticed my necklace and told me she was a Russian Jew. I said that I was, as well, or at least most of my father’s side came from there. Wouldn’t she know that if she were psychic? She rambled on a bit, presumably to get my business and then left while saying, “Jews are very psychic,” to which I replied, “Well, I’m not.” I paid for my oil and never went back to that store, but I go to a shop in the same complex every couple of months and think about that comment.
I get premonitions. When my paternal grandfather was dying in the hospital, I visited him every night after work. He was on a respirator and pumped full of morphine and every breath sounded like his last, but I knew when he was going to die. No one had told me that it was probably his last night and he looked the same: a comatose body in a bed in the ICU, but I knew. On that last night, I kissed him on his high forehead, not so different from my own, and said, “I love you, Papa.” He died early the next morning and I wasn’t there, but at least I got to say goodbye.
When I was young, I had this premonition that the number 22 was bad luck. On the 22nd of that month, my brother and his friend were sliding down our staircase on vinyl pillows—a rather stupid thing to do—and my brother’s friend didn’t land right and broke his arm. That was just the beginning of bad luck with the number 22 and I wouldn’t even fly on that day. When I hit my head this January, it was on the 22nd.
Oh sure, most people probably can relate or have had similar experiences—I never claimed to be psychic if you recall, but I wish I were.
But, one premonition that came to me within the last 10 years seems to be coming true, once again. I said that I wouldn’t make it past a certain age: a milestone birthday which most people dread that is just around the corner. I’d make it to that age, but not any further. Do I care? No I don’t, as long as my cat is okay.
You might wonder about that. Life is so great; there’s so much to do and so little time; there are friends and lovers and soul mates; there is travel and adventure. That’s not my life anymore.
My life starts the same everyday and has for the last 13 years: I wish I’d died in my sleep as soon as the alarm wakes me up from my medication-induced shallow sleep and the chronic pain hits me like a ton of bricks. The pain feels like someone took my skin off, shrunk it 4 sizes too small, and put it back on my body so that the muscles and fascia are literally bruised to the bone from the compression. I have to get out of bed and move and try to see with the new vision I was also blessed with. I need hours in a recliner with a down pillow to get my pain down to a level 7 on the 1-10 scale, but I have to keep getting up, moving around, and stretching or it just gets worse as my muscles chronically go into spasm. I have to figure out what to eat when I’m down to less than 10 foods, and I’ll still break out in painful rashes and my GI tract will be a mess all day and night. And at some point—usually after midnight if I don’t have a ridiculous appointment, I have to shower and deal with the upkeep that a human body requires unless you want to look like the vagrants in the parking lot here. Then, there are the chores that are so hard, like cleaning my 300 sf room here at the motel and using the laundry room down the hall.
Most people do all this everyday without a second thought. I know, I used to do it too, and I worked more than full-time and went to the gym and hung out here and there and had friends that I did things with. But, now it’s sheer torture to just get through a day filled with nothing. There is no meaning in a life without purpose and to stay alive, whatever that even means, just to live everyday in a body that’s a torture chamber is beyond my comprehension. And if anyone thinks there’s a meaning in any of this, I’ll let you know right now that there isn’t.
However, I try. I’ve been trying since 2001 and while I manage to make it through this same routine, or add more fun to it by throwing in the painful sclerals if I go out, doing errands, rushing the routine to get to an appointment, driving a 5-speed with seats that feel like they’re made out of concrete, and on and on, I’m so very tired of it.
I forced myself out tonight, in fact. It’s been a bad week, month, year, decade, 13 years. There was yet another shooting around the corner off a street I refer to as The Jungle. Gun violence hits way too close to home for me and the PTSD I never wrote about gets triggered and everything goes haywire. Then, a guy who stayed at this motel the 1st time I was here came back—fresh from being released from a mental institution, which is where he should have been for life.
Back in late 2010, he was my neighbor and threw me from one side of the hallway to another after I got on him about all his illegal activities and highly annoying behavior in here. He also destroyed at least 3 rooms in this motel, had a huge Rottweiler at one point that was anything but trained, got his ghetto cousin and mother, who was an old prostitute, a room in here as well, and the general manager could have cared less. He only left when the rent went up and most of his type of people couldn’t afford to stay, and I left a few weeks later as I’d found a cheaper and seemingly nicer studio down the street which later became a sea of raw sewage, but this guy left owing over $4,000 in back rent and damage. Well, seeing that the GM has some sort of white guilt and just feels so sorry for this poor, half-black guy and his phony sob story of being a combat veteran which must be part of his delusional disorder, he’s now back and if I could see like I used to, I’d buy the .380 I had 20 years ago because I apparently could have been a sharpshooter I was that good.
But, I digress. I forced myself out tonight. I had to do a few errands and thought I’d stop at a relatively inexpensive clothing store and perhaps cheer myself up by buying a new top that wasn’t from the thrift store, and I rarely even do that. I found a couple of things after a lot of searching because I’m picky and don’t like cheap looking clothing and extra small is not a common size in this town. The prices were too high for synthetics and cotton blends, another favorite down here, and I sure wasn’t paying for a label at that store, but I headed to the over-lit dressing room, regardless.
And there I was in the mirror and I had my sclerals in. The old, gaunt-faced skeleton covered in black bruises and aubergine purpura and a venous pattern like a road map all from Ehlers-Danlos syndrome. Everything looked awful because I looked awful. I wanted long sleeves to hide the blue veins and hundreds of weird wrinkles stacked on my elbows due to the faulty collagen in my skin. I wished I could wear my winter gloves to hide the acrogeria on my hands that makes them look like an old lady’s. I only like V-necks, but all I could see were the bones and veins in my chest and my neck that’s so thin and vein-y it looks like my head is too big and that it’ll snap in half at any moment. That was enough. I know what I once looked like. I remember being attractive and normal and that was stolen from me like everything else. No wonder someone found my blog by typing “Ehlers-Danlos freaks” into Google.
So, I bought a long sweater with a hood that wasn’t worth $30 bucks—when it’s already warm here and will be 115° soon. I went to my car, got on the freeway with the cars speeding past me at 90 mph, and cried the whole way back to the motel with the mashugana who just got out of the cuckoo’s nest on the top floor.
I have a joke with the staff here that the only way I’ll ever get out of this motel is in a body bag. It’s a family legacy: my paternal great-grandfather died of a massive heart attack in his suite at the Biltmore, where he was residing while doing business in another state. But, at least he died in the Biltmore and not a 2 star motel that now serves as a halfway house for mental patients.
My, what a confusing post. It’s going backwards and forwards and sideways, rather like how my brain is these days. It’s no secret that I don’t like blogging. I already tried to stop once and even wrote a post that I was, but quitting is for failures said my father long ago, and as all I’ve done is fail since getting sick due to my body being some degenerative thing that I’m just stuck in, I forced myself to keep going. I had my search engine crowd who needed information and then I met bloggers along the way, which I didn’t even know was part of blogging as I’d never really seen a blog until my youngest brother created this very blog for me to document my corneal collagen cross-linking experience—and that I have done.
To tidy up this ridiculously long and rambling post, which happens to coincide with the one year anniversary of the death of someone I cared about very much and is just adding to my depressed state, I am bidding adieu to my blog for now. I may be back in 2 weeks and I may never be back, but I need a huge break from it and from WordPress and this unsettling feeling of giving so much of my time to others on here and getting very little in return. To the very few people who have been a friend on here, I thank you and am sorry I can’t be there for you right now, but I can feel the sand trickling through the hourglass—that old premonition—and need this time to focus on myself and fold my cards if all else fails.
A fire broke out in a boarded-up hotel next to a gas station that sits kitty-corner to my motel recently. The deserted, ’70s-era structure, built under old building codes and with no functioning sprinklers, turned into an inferno in minutes and the entire roof collapsed.
It took over 100 firefighters to make their way through the busy, backed up street to get to the hotel and attempt to get a hold of the fire from the building’s exterior due to the roof, and the next day they were still pouring water inside the smoldering structure from a tall ladder, as they couldn’t enter the building due to safety issues. I took this photo 15 minutes after I smelled smoke and the firefighters had already done a great job of tackling the bulk of the inferno within a short period of time.
It was mid-afternoon and I was up as I had to get my X-ray reports. I was about to shower and smelled bacon—and I don’t eat pork. My motel has kitchenettes, which is why I fork over extra dough to stay here due to my food intolerances and allergies and the cost of eating out—and I was pissed off that some neighbor was frying up swine and stinking up my room. Within one minute, however, it smelled like my home state of Washington, which is like an earthy perfume with a base note of a wood burning fireplace.
My brain screamed, “Fire!” I looked out the window, but it was daylight and I get a whiteout effect. I had noticed it was a hair overcast earlier, as clouds equal more pain, but when I went to the window, the sky was black and the smoke was blowing toward me, but the corner of the building that juts out was blocking my view. I thought a plane had crashed, but my brain said, “Burning wood.” I flew out of my room and went to the hall around the corner that has a window that faces the same direction and presumed the fire was from that boarded-up hotel, even though I can’t see far and it was so black out from the smoke.
Then I panicked. I knew there was a gas station right next to the hotel and figured the whole ‘hood was going to blowup. I went back down the hall to try to find someone, but I can’t see people well, just figures and color. I noticed a guy with a big cart of sorts, and know there are a couple of employees who clean up the halls and rooms after someone moves out. I made an educated guess and yelled, “¡Oye! ¿Qué pasó? ¡Hay un gran fuego afuera!”
The unknown employee came down the hall and told me in Spanish that the gran fuego afuera (big fire outside) was from the old hotel and then shut the window, so he didn’t seem too worried. I told him how I was afraid of fires and didn’t know what had happened. The whole motel smelled like a bonfire by then, including my room, but I threw on my sunglasses and grabbed my camera which I never use and went downstairs to get photos. This is when it no longer looked like a 787 Dreamliner—currently grounded—had crashed while trying to land at the nearby airport, but it still looked and smelled awful.
The last time I lived here, there was a small fire on the top floor caused by one of the resident meth addicts lighting up a garbage can. Their other hobbies include chronic pacing and dragging furniture across the floor 24/7, as I have lived below 2 meth addicts now—and one was in a rental condo. As a result of the burning garbage can, the alarms went off in the middle of the night throughout the building and in my room—same one as now for good luck—and the fire doors in the hallways slammed shut and the elevators shutdown. I was still awake, but it was scary as hell.
I was worried the sprinklers would go off, so I shoved all I could under the table and covered the rest with garbage bags and grabbed my purse that holds a lot of what I need, my medications I can’t live without, my laptop, and my beloved cat, who I stuffed screaming into her carrier, and got into the stairwell to get to the nearest side exit and sat on the curb with the other residents who stay at the front of the motel. I should add that my vision was near 20/20 less than 2 year ago. The firefighters were everywhere by then and were going in and out that same door by where I was sitting and trying to reassure us. I didn’t know what was really going on and no one was talking to me.
I used to have a buddy in here on the top floor at the back of the motel—a cool guy who went to UC Irvine and had a life spiraling downward like mine. We used to lay for hours in the lounge chairs by the pool in the middle of the 100° F summer nights talking life and politics and discussing things like the ridiculousness of Reaganomics and the craziness of the Nixon-Agnew Administration, although neither of us were alive during the latter (well, I almost was). He texted me while I sat on that curb to see if I was alright. I texted him that I was and he said he was too, and that he and his neighbors were all outside at the back of the motel. Nearly 2 years later, I still have those texts in my cell.
My experience was a far cry from the 4-alarm fire in the boarded-up hotel, which is presumed to be caused by the squatters who had been living in there and roam this neighborhood. This is why a ghetto is a ghetto and they are not created on their own. This building owner, like others, was allowed to let the hotel sit boarded-up for nearly a decade and the city turned a blind eye, as they don’t care what it looks in my neighborhood. However, now that it is unsafe per the code, the city has ordered the owner to demolish it, which would have saved them and the tax payers a lot of money if it had been done nearly a decade ago and never would have caught on fire.
I equate my life and chronic health problems to a fire a lot. A fire just starts suddenly—often when you least expect it—and destroys everything in its path. It provokes fear and anxiety. It’s unpredictable and volatile and is affected by many things, like weather conditions and people—who either help put it out or stand by and do nothing. It changes the way a building once looked and how it functions and people get displaced. You lose things in a fire you will never get back, which is why you instantly grab what is most important It is a split second decision, so you better get it right. You have to know what to hold on to and what to leave behind, and have the sense to know what matters for your survival. By all means, hope that you have at least one person who cares that you made it through alive, even if in time they disappear into the smoke.
When the fire continues to smolder like it did in this building and has in my body for 12 years, keep fighting because with every flame you extinguish, another shows up right behind it. A fire can become an eternal flame and that is where things get tricky.