Author: Cunill

I had my weekly meeting with Dr. Dragonfly yesterday. We talked about Bluestone and how hard it was to write and how it felt to write it. I’m not going to go into all of the details. We also talked about my mother. I think I commented earlier that she had really pissed me off twice a few days ago. Rather than politely disagreeing with a statement, she chose to call it (and me) flat out wrong. That didn’t make me very happy at all. What’s worse, is about 15 minutes later, she initiated an IM session with me and didn’t even bring the whole thing up. We did the usual chit chat and all of a sudden, Damien needed something and she had to go. I am the least important as always.

I can’t continue to seek this relationship. It’s a relationship she’s not capable of feeling or giving, I suppose. I always used to think that parents’ love was unconditional, but I learned at a very young age that with my father that wasn’t true and much later that it wasn’t true with my mother either. I’m still quite sure she still prays that someday I’ll find my way back to ‘god,’ believe again and become straight. It doesn’t work that way. I wasn’t what she ultimately wanted me to be. I’m not even sure what she wanted me to be. After Spain, she never really engaged in my life anymore. She always hid it under the guise of ‘I didn’t want to interrupt you,’ but it was really, ‘I don’t really want to know.’

I have no further reason to return to Ohio.

But now, I sit here on an overcast Tuesday morning with a shitload of pent-up aggression and energy and I have no idea what to do with it. It either has to come out or the narcolepsy has to kick in, one of the two. I’m wound up and will blow at any second unless I can find a way to get rid of this. Maybe I just need more sleep. I don’t know anymore.

I’m tired.

So.here I sit, yet again pissed off at my mother. I really have to stop wanting this relationship that just isn’t ever going to happen. Today was about a pro-life graphic she posted. She never posts shit like that. Of course, my cousin Theresa had to jump on board with the ‘child didn’t choose to be conceived’ thing. Now, had it been anyone else, I may have taken that argument into account, just a little, but she has absolutely no business towing that party line. She had quite the reputation in high school and one of my closest friends lost his virginity to her.

I couldn’t let the stupid thing go, mostly because I hate ignorance. I changed the term to pro-choice and simply stated that I’m pro-choice because I don’t believe I have the right to tell anyone else what to do with their body, or anything therein. I also clarified my definition of human life as ‘viable outside the womb, not at conception.’ The argument was sound and logical. The opinion was backed up by fact (evolution and natural selection).

My Mother’s response was swift and concise. “You are wrong. The child didn’t have a choice.” It’s not a child. It’s a fucking zygote, a collection of cells. I simply told her that it was fine. I could  be wrong. It’s just how I saw things and I thought that was the end of it. I was annoyed by that point because my mother is normally more articulate than that, but she is given over to blind faith and she has the worst vice of all of them, no vices at all. She clearly conveyed to me that once again, her religion takes precedence over everything. She stayed online and stayed online and stayed online. I wasn’t about to engage her.

I was doing stuff for my headache support board. Suddenly, ‘ding,’ a message from my mother asking if everything was ok. I had my normal headache, so I told her that it was great, 71 degrees, the windows were open and the cats were surveying their kingdom. It could’nt be better. (Dilaudid would’ve made it a little better.) Chit chat, allergies, wind, rain, too much mold, etc. Oh-Brooke played a great April Fool’s joke on your brother…A little more chit chat and all of a sudden, “Well, I have to go. Damien just called and we have to take him for a job interview.” As usual, dismissed as the least important thing. Everything else comes before me. I just end up in a bad mood.

It really has to stop. I’ve done it before. I have to completely limit contact. I know that’s withdrawal, but confrontation with her isn’t possible either. She shuts down and changes the subject at the very hint of a serious discussion about something. I guess I’ll just have to be <afk> more often.

As a very curious side note, my mother-in-law called me while I was in Target today. I was still feeling pretty angry at my mom. We had the most wonderful conversation about everything and nothing just like we always do when she calls. It’s very sad that a call from my mother in law makes me happy and call, posts or IM from my own mother depresses the fuck out of me.

So this morning I had my weekly meeting with Dr. Dragonfly. My pain level has been high since I got up and I’m out of sorts (I told her). We talked about where the balance was and what might push me over one way or the other. I think she knew not to take a direct route. We discussed things going on here in AZ, and planning for Brian to come down. We also talked about Trino and how nice it is to have him down here. We adapt to each other’s needs. I still really wish I had had someone to show me the way through a long time ago. (She was able to insert the spaceship full of my companions a few times throughout the session.) She wants me to start writing Bluestone and try to get through this crap with my Mom.

At the end of the session, I told her I needed to do some errands. She said, no, you’re in pain and not stable. Go home.

So Dr. Dragonfly and I keep running circles around the relationship between my mother and I. It’s very clear that my relationship with my father is dead. (Referred to as the Husk in Blackstone).

We’re trying to tap into that mourning or sadness that comes with wanting a relationship with a parent that the parent is not either willing or able to provide, and never has been. As with babies, you can only reach out so much before you stop. You never stop wanting the relationship though. It’s natural and deserved. It’s not selfish. It’s something that should’ve been there from the beginning.

A mother is, especially as a child-adolescent-the ultimate shield. She may not be your real confidant, but she is supposed to look out for you and your interests, help build you to so that you can function in civil society, protect you from harm, both inside and outside of the home, make you feel loved, adored, wanted, needed and unique. Mine did very little of either of those. However, somehow, through her dereliction and my father’s constant abuse, I was able to later realize that I had picked up the opposite behaviors despite them.

I became a chameleon. I could be anyone you wanted me to be. If I had to be the straight A student who never, ever got into trouble. Fine. If I had to be the quiet little boy at the table who didn’t fidget and ate his food quietly. Fine. If I had to be a little church mouse. Wonderful. If I had to be a raunchy, foul-mouthed employee working the back. Beautiful. I could adapt to anything. I adapted myself into not having a fucking clue who I was. I was so many things to so many people, depending on what they needed/expected, that I had lost myself in the process. I think I realized that somewhere between 16-17 y/o.

I knew I had to build a new identity for me. I decided to take the good things about the chameleon experience and put them together. I put my likes and dislikes together. I started questioning the validity, authenticity, idiocy and hypocrisy of the Christian religion (the others came later-on Blackstone, they didn’t exist) and their attitudes towards homosexuality.

My sexuality was one of the huge reasons I wasn’t able to establish my own identity. I had heard for the last 15-18 years that all homosexuals were an abomination to god and would automatically go to Hell forever whether they repented or not. One day, the good pastor was sermonizing back during the AIDS crisis. He had the audacity to repeat the AIDS was a plague from god to wipe out the homosexual population. (85-89ish). I didn’t take very kindly to it since one of my friends had recently died from complications from AIDS.  Mind you, this is a little country church serving two or three shithole towns. I stood up from the pew, sitting right beside my parents, called the preacher out and told him he was a fucking asshole and how dare he say something so blatantly ignorant and arrogant. I destroyed his feeble attempts at trying to counter me and looked at the congregation and to them that if they actually believed what that charlatan had just said, they were fucking fools and would end up right next to him in his precious Hell. I left. I had to work that day, so I drove. Once I got home later that evening, my father had an opinion. I don’t give a fuzzy rat’s ass about his opinion. Of course it was contrary to mine. I just told him to shut the fuck up and that if he really wanted to see what the disease does and how quickly it destroys a person, visit someone with it in the hospital.

Finally, graduation came. 1987. The only year that I was actually popular at school. I was the editor-in-chief of the yearbook. Everyone wanted to be my friend, ulterior motives obviously. I got through the year relatively easily. Of course there were the typical snide gay comments, even to the bloody end. To put this very clearly, I am fervently against censorship. In a senior yearbook, you have the ‘what will they be in the future.’ My future was the head bartender at the Blue Oyster Bar and Grill from Police Academy. I had no idea what it was. (I wasn’t allowed to see Police Academy bc my mother that is was too vulgar.) A friend finally told me. I was devastated. That last little knife when I didn’t think there was any more room. I let it stand though and the yearbook was published as is. Of course everyone complained that I had fucked the whole thing up. I did the best I could with the Jr. High kids that helped me (because kids my own age didn’t want to be seen with me) an advisor who didn’t know what he was doing and a less than helpful publishing company. It was perfect, but it wasn’t bad either.

There would never be a ‘good job!’ for me on Blackstone, but I had graduated and hatched a plan to flee to Bluestone. College. My parents would never set foot on Bluestone unless they absolutely had to. Graduation day came and went. When the ceremony was over, mom and dad went home and left me at school. They didn’t realize that they had left me until someone asked where I was and they couldn’t find me. By that time I was sick of the harassment of my classmates and had started walking home. (In a time and land before cellphones). It was only a mile and I was almost home by the time they got around to picking me up. I wasn’t happy, but I went upstairs, splashed some water on my face and enjoyed the festivities. I stayed pretty close to my grandpa. He was one of my few supporters.

I worked at the truck stop as much as I could between mid-May and August that year. I would work late hours so that I didn’t have to deal with either of my parents very much. I didn’t have a social life, so work filled the bill. Finally, mid-August came. I had played the tuba/sousaphone since Jr. High, so I was accepted into the University of Toledo Rocket Marching Band. I was so happy. The Husk kept reminding me that it wasn’t Ohio State. Even when I was the first person to enter the football field, that wasn’t enough for him, but I digress…My parents went with me to help me get settled on Bluestone. (The only universities on Blackstone were dogmatic. That wasn’t happening.) They left as soon as everything was in. They couldn’t stand to be on Bluestone. As they told me, ‘Be careful son. Bluestone is beautiful, but it is a den of iniquity and immorality. You must be on your guard lest you lose your soul to the fires of Hell.’ The door closed and I was finally on Bluestone.

Dr. Dragonfly wants me to visualize all of the people and pets waiting for me both at Blackstone and Bluestone that I’ll eventually meet who will be happy to see me, protect me and help me along the way. She wants me to feel the connections to these people/pets and how they’ve helped me either by showing me how to write with felt letters (dyslexic) or just a big old Lab with his head on my lap trying to calm me down. That, I’m able to feel and see. The second part, I can’t. The first is a visual like a globe with a sphere of the stars around it. I see them and I feel them. I know who is there and who has made an impact on my life.

On top of that, she wants me to put all of those pets/people in my spaceship when I return to Blackstone so that I can feel them personal support or physical support they give me while I deal with the devastation, the Fire elemental, the Husk and the aftermath of being turned away once again. I see them there. I feel them, but as a memory. I’m not able to link the memory to the present regardless of how the memory makes me feel. This is going to take some work.

I feel odd. I know it’s part of the depression or the PTSD, but I feel odd. I should be very happy that the headaches are not horrible. I should be very happy that I have my Trino with me and the cats. I am happy about those things. However, I have this nagging, depressing feeling with me constantly. I’m sure it has to do with the fact that I don’t like that Brian’s still in Chicago and that I haven’t come to complete terms with having to move out here just because I have a fucking headache. (I understand that it’s more complicated than that, but, the feeling remains.) I think the worst part about the whole thing is Ohio. My brain just wants to shut the whole mess off and get on with it, but when I look at it over time I see:

A binary planetary system. One planet looks much like Earth. It’s green and blue with white clouds swirling around. From the vast, expansive darkness of space, it is warm and inviting. However, I did not come from that place. I fled from my home world to the safety of that place.

My gaze fixes on the Mercury-like dark planet. Void of anything except the large chasms and craters that are reformed every day through it’s violent gravitational war between the sun and its binary neighbor. I left this planet many years ago, but the banshee’s call still sings in my ears.

I approach the planet for the first time in a very long time. I see the scars of what once was and what will never be. I watched the trail of tears, sparkling in the dim light and hard as diamonds, and broken expectations from the safety of my starship. I saw the dead volcanos and devastated mountain ranges. Many of them lay in my wake. I had to learn to survive. I was not physically strong, so I had to rely on my intelligence and persuasion. I could, and still can, destroy someone with a few nicely placed words. Divide and confuse.

I set off in the landing craft to survey what once was. All of the tears, volcanos devastated mountain ranges and endless chasms pointed in one direction. A massive volcano had at some point appeared on the dark side of the desolate planet. It followed the trail. What I saw completely surprised me. I expected a huge, raging volcano spewing out various megatons of magma. It was a massive volcano with one little dying magma pool in the center. This was new to me. Everything else on this planet had died away for me a long time ago, when I left for our celestial twin. Out of the corner of my eye, I noticed some dimly glowing Nordic runes. I could barely make them out, but recognized them sufficiently to know that my brother still inhabited this world as well. I always hoped that his children would flee like I did.

A fire elemental managed to scrape up enough energy to appear. “You must come down and talk to me. I must see you. You haven’t visited in a very long time. Don’t you miss me?”

I look down from my view screen and answer it. “I can’t. If I leave the ship, I will be destroyed.”

“No pumpkin,” she insisted, (the voice becoming more familiar) “I will protect you. I’ll keep you safe and I’ll make everything ok. I won’t let anything hurt you.”

“Odd. I remember those words echoing in my past often. Each time they rang hollow.”

-“Leave him. He’s just an overeducated, queer pompous ass.” Declared another husky disembodied voice. I recognized it immediately.

“Hush, I can’t. He is my child. I must bring him back to me. It will be different this time. You’ll see. Why won’t you come back? Don’t you love me anymore?”

“It’s not a matter of that. Partially, it’s for reasons you refuse to understand. Mostly, it’s because I can’t anymore. I can’t spare the emotional capital and the eventual let-down that comes with it. It’s for all of the times when I needed help and protection and none came. It’s for the moment that I learned that unconditional love really doesn’t exist. It’s for your priorities. I was always at the bottom of the list. If you had time. I didn’t cause any problems, so I didn’t need as much attention as everything/one else. It’s for fleeing the Husk and then returning. It’s for the idiocy of your religion and how everything took a back seat to your relationship with the Great Toaster in the Sky. I’ve always been last on the list. You would always drop anything you and I were doing should someone or something more important come along.

I fled this place and became very successful. I went to school and made something of myself despite a debilitating medical condition until I could no longer do it. I have a world view, not dogma. I’ve been on other worlds and learned the various customs of the people. My world is not limited to your little magma pit. You tossed me aside for my brother as the black sheep of the family, but in reality, both you and the Husk never realized that he was the actual black sheep. I went off, got married and have had a nice , successful life.

So, now I stare down at you in your much diminished form. I don’t even bother to look for the Husk. It wasn’t relevant by 15. It simply occupied space and was a horribly abusive ogre to both of us, but you did nothing. There’s a special corner of the Universe waiting for it and I’ll be there with the popcorn.

I have to ask, was it worth it? Was it worth forced Sunday school, church, church camp etc? Was it worth spewing all of the hate-filled dogma that made me feel like I was worthless? Was it worth ‘what will the neighbors think?,’ Was it worth ‘people didn’t get divorced then?’ Was it all worth it? Was it worth telling me that you wanted to be more of a part of my life and then backing off each time? How about, ‘I didn’t want to call bc I thought I’d interrupt you.’ Was it worth changing the subject and/or ending the conversation if you thought it was going to get a little messy?  Was it worth it? To look at you now, defeated and everything, my guess in no. However, you’ll never admit it. You’re a prideful woman and your deity will take care of you regardless of what happens in this existence. No, it wasn’t worth it because you didn’t allow yourself to live.

I would like to see you. I’d like to visit you, but not on your turf. On Bluestone. I can’t visit you here. I can’t not only because of the atmosphere, but because you’ve kept the Husk around. It, and you by extension, are toxic to me. You must come to me or I will have to find a way to mourn this relationship as you slowly pull away and that fills me with both anger and sadness that I don’t know how to release.

You have much to consider. My decisions have been made. My consequences are my own and no one else’s. I have no need to lay them at the feet of some made up god. I’ll continue to reach out to you, but there has to be something for me to hold onto or I’ll eventually go my own way.”

She melts back into the magma pool without a single word. For a moment, the pool glows very brightly and gets somewhat bigger. I was hoping she’d reform and answer me. Instead, I ended up with the disembodied Husk.

“Leave us you ungrateful little bastard and never return. You never did amount to a hill of beans, just like I said you wouldn’t. I told you over and over again that you wouldn’t amount to anything. You went out and got all citified and liberal and tried to bring all of that shit home. Well, it doesn’t belong here and neither do you. Go back to your city and your godless existence. Go back to your ‘friends’ because you really don’t have any. I don’t understand how you people can even go out. It was much easier when all you queers were still in the closet. We didn’t have to deal with this shit. Go back to your pretentious, overeducated life where you know what’s better for everyone…”

I cut him off without a word. Punched in the coordinates and returned to Bluestone.

(part 2-bluestone soon)

I haven’t been here for awhile. I guess it’s been a nice vacation. I had a shitty stay in headache rehab. For the first week, the headache didn’t budge. Finally, after the second round of DHE, it did. Unfortunately, so did my ammonia levels. They went to the point to where they were toxic. My blood had become toxic. My ten days quickly turned in 17 days. The ammonia levels did not want to fall.

Now, I’m back in Phoenix and doing pretty well. I don’t have consecutive yellow or red days, so that’s a plus. I have my favorite babysitter. I have to say that the cats are wonderful, but I really did need to have a human around, especially when I get confused. It’s spring here. It’s lovely and everything is blooming. The desert is gorgeous when it’s in bloom. The days are in the 80-90s and the nights in the high 50-60s. It doesn’t get much better than that.

I honestly don’t know what’s going on at DHC. They seem to be on some path toward self-destruction. A couple years ago, they put a policy in place, without warning, that stated that anyone on TCHIP had to give a $100 deposit before getting an SPG block. I didn’t like it because my insurance pays the bills, but fine. It’s only $100. It’s a deposit, so I should see it back once my insurance pays. I’ve never seen a penny of it.

This year, also without warning, DHC has instituted a $1000 deposit to even get your foot into the door at rehab. It has been a nightmare for various people. Most people can’t afford to plunk down $1k just to get into rehab. They’d go broke. Many are financially hanging on by their fingernails as it is. I would be if we didn’t have two incomes. I seem to be the go to person for both Oz and the Towers, so people asked me what was going on. I had no clue, but I told them that I’d try to get them an answer.

I called Oz to talk to pay my balance and then transfer to Harriet to ask about the deposit. I paid the balance and then went straight to voicemail, twice. The next day I called again. They know my voice and greeted me by name. I’ve been there way too often. I asked to be transferred to Harriet. She actually answered. I asked her the reason for the deposit, whether or not we’ll ever see them money back and why we weren’t notified. She said that the notification was the sign on the counter. I told her that’s not notification, that’s a I’m being fucked over (but in polite words). I got that the deposit is to cover things that insurance doesn’t. There is a lot of cross billing between Oz and the Towers and sometimes, insurance doesn’t cover all of it. The deposit is to cover the shortfall. I told her that it wasn’t a deposit then, it was a subsidy and they should word it as such. I also told her that we should have been given 30 notice before the new policy went into effect according to the IL Atty. General’s Office. I asked her very nicely, but forcefully, that they generate a letter to their patients similar to the letter they sent us about the Toradol recall. She whimpered and whined, but I really didn’t let her get a word in edgewise.

I reported back to the board. More questions. Is this legal? Is it ethical? How does this affect insurance? I don’t have the answer to these questions. I just got the answer and reason for the $1k deposit. AND here’s where I’m going to be a bit selfish. I can’t tell you how many people over the board and through IM asked me to get this information. As I’ve told you before, they know me by voice. Before I moved to Phoenix, I was there every 3 weeks. I didn’t even have to tell them my name. They knew my name wasn’t James, it’s Michael. I use my middle name. I’ve been there since 2000, but I still took a huge risk taking on the billing department. Harriet has made other people’s lives miserable for less. She’s not the most pleasant person in the world. There were probably consequences to my actions, but I asked anyway.

When I reported the whole issue back to the board and fielded a couple more questions, I believe I got a total of maybe 4 ‘Thank you’s.’ I’m not looking for validation all the time, but this was a big deal had it gone badly. I happily do this job out of the kindness of my heart. I love doing it. I like looking things up for people and putting funny things up to brighten someone’s day. It’s fun, but when it’s serious, it’s serious.

That stupid thing with Sara, I still don’t understand. She could’ve complained all she wanted about Diamond. She just couldn’t recommend docs like she did or sink to the level of toxicity that she did. I was blissfully unaware that the entire incident had happened until I woke up the next morning. Yes, I did write her the message. It was diplomatic, not snarky. I think the only snarky part was the end of the message. I don’t have time to deal with those people. I am there to serve and protect the board. They can say whatever the fuck they want to as long as they don’t mention names and don’t go down some bottomless rabbit hole.

Now, we’re running a problem with insurance/medicare-aide not allowing out of state patients to see their docs at DHC. I’m not cool with that. I don’t want to lose people because of an insurance problem, but the rules are current and active DHC patients. The membership of the board will have to vote on the issue.

I am currently a little unhappy with my wizard. He, and his staff, seem not to be as responsive to me now that I’ve gone to Mayo. I’ve been trying to get an Rx filled for a little over a week now. I sent the docs from Mayo to my wizard and got a non-answer from him as to what his opinion was. I’ve asked him another series of questions, so I hope to get a better answer over the weekend. I’m not sure why they can’t read email over the weekend, especially when they just got back from vacation.

I’m not sure what’s going on there, but I just hope it’s not going to be a quality of care issue. I still need my wizard and I’ll still need my histamine treatment, maybe sooner than later.

Indulge me for a few moments. I didn’t do a blog dump after the psycho last Monday because I guess I didn’t really know what to say. At this moment in time, I can clearly say that I am angry.

Dr. Dragonfly and I have been talking about that anger for a little while now and it seems that between my mother and my father there’s enough to go around. My father was a given, but I hadn’t considered my mother.  My father was (is) an asshole and bully who never thought I could do anything right. I always had to learn the hard way and nothing was ever good enough for him. By the ripe old age of 14 or 15, I knew that I was going to escape. There was no way that I would stay in the small town environment. I didn’t have the small town mentality. I didn’t deal well with the small ideas and the closed mindedness.

There were a few particularly telling events with him from my teenage years that actually made me finally give up on him. He forced me to play basket ball in Jr. High. I sucked. I actually made a basket for the other team because I had no idea what was going on. Luckily, I got hurt and that ended my basketball career. About that same time, and earlier, hot wheels race cars were very popular. Unfortunately, the race car tracks made a good weapon to use against your children. He would beat me mercilessly with them. The welts were visible for days on my ass and the backs of my legs. This is also the time when we wore track shorts for PE. You could see all of the welts. The PE teacher could clearly see all of the welts, but she did nothing. She didn’t care. You didn’t get involved with family squabbles.

Since it was clear that I was being abused at home, why not abuse me at school too. I mean, the name calling just wasn’t enough. More than a couple times, I was forced by stronger classmates to suck cock either in the shower or while we were changing to go to class. Afterwards, I just sat in the shower and cried. The PE teacher knew what was going on, but all I got was a ‘C’mon Stewart. You’re going to be late for class and I’m not writing you a pass.’ There was no one I could tell about it. No one would believe me. They still don’t. I would tell my mom that I was being harassed and bullied at school and she would just dismiss it and tell me to try harder to get along with the other kids. She didn’t understand why I had to be so different from everyone else. Dad just called the bullying horseplay and said that it happened to everyone. Now, we call it aggravated sexual assault. It happened more than once over the years. The first time, I was 13.

I was also very good with music. At that time drum and bugle corps were very popular. There was one in a nearby city. He took me to audition, but I didn’t make it in. When we got in the car, I was already crestfallen, but he had to add insult to injury and slam his ram and fist into my chest and tell me how worthless I was because I couldn’t get into a goddamned drum and bugle corps. How would I ever make it into Ohio State’s marching band? (I wasn’t going to go to Ohio State.)

That same year, we were coming home from church one day. I noticed a pair of dogs running around playing at a house we always went past. They were German Shepherds, but something was different about them. They were albino. I said, look, there are two albino German Shepherds! My dad quickly said that there was no such animal. I said, look, there they are playing in the yard. It didn’t matter. They didn’t exist and I was on the receiving end of the hot wheels racetrack again. Later that same day, we went back to Ridgeway (nearby village) to work on a float for an upcoming parade. The preacher came up to me, put his arm around me and told me what a wonderful, christian man my father was. I was incredulous! I looked at my preacher and said, loud enough for everyone to hear me-welts fully visible-My dad is a bastard! That didn’t go over so well. I was taken behind the building and, of course, beaten up. We retuned to the float where dad said, he’ll be fine now. I just gave him a little tune-up. No one intervened, not even the preacher. I told my mom what happened and got, ‘well you shouldn’t say things like that about your father, especially when you’re in public.’

My last attempt at pleasing him was a tractor certification course. Ohio changed the laws to where if you didn’t have a license, you had to be certified to drive a tractor on the road. (As if driving a tractor were difficult. I’d been doing it since I was 8.) Fine, I took the course like he wanted me to and did very well on the laws part. It was boring, but it got me out of the house. The tractor/combine driving part was ok as long as I was backing something up that had 3 or 4 wheels and a long enough tongue to give me some wiggle room. It wasn’t perfect, but I could do it. When it came to something with two wheels, however, no dice. I couldn’t back up a plough to save my life. One day, after practicing for who know how long and not getting it right, my dad got really mad again and pulled me off of a moving tractor. Luckily, I had time to pop the clutch so that the tractor stopped moving. He slammed me against a metal corn crib and started beating me with a lead/metal pipe and I started screaming at him. Mom heard the noise and came out. All I got was a ‘Jim put that pipe down and let him go before you hurt him.’ Dad stopped. I looked at him and said, ‘If you ever fucking touch me again, the next person you’ll be looking at is a police officer.’ and walked away. I think I got in my car and went to visit my grandpa for a very long time. I was 14 and it sucked because I was still dependent on them.

Now, my anger at my dad is still there, but it has subsided and mostly turned into repulsion and disgust. He is an ignorant, overbearing ogre to this day and still tries to pick fights with me. All I wanted to hear from him the entire time I was growing up was that he was proud of me and that he loved me. He finally said it when I came home from my year abroad in Spain (Universidad de Barcelona) when they picked me up at the airport. I just looked into his eyes and said, ‘thanks, but it’s too little, too late.’

Now, my mom comes into the picture. I hadn’t realized that the entire time I was growing up she had been impotent and mostly absent. Not absent in physical terms, but absent in emotional terms. I never gave anyone trouble. I was a chameleon. I could be what you wanted me to be. I had no identity. Since I didn’t cause problems, everyone else took precedence over me. My brother was a mess (still is). My cousin was a mess (still is). It didn’t matter who or what it was, it was more important than me because I was able to take care of myself. I was independent from an early age.

I constantly told her about the bullying and the things they called me. I’d tell her that on the playground I didn’t really play with anyone because they all wanted to play ‘smear the queer’ and you know who the queer was. ‘You just need to try harder to fit in.’ Why do I have to try harder? I’m not doing anything. They’re doing this to me.’ ‘It will be ok honey, or pumpkin or whatever she called me.’ It was never ok. I stopped saying anything. It didn’t matter, she wasn’t going to really do anything anyway. The only time she actually intervened on my behalf was in 4th grade when the teacher put me in the ‘blackbirds’ reading group. (The lowest skill group. I was already reading at an 11th grade level.) Then, she had an opinion. ‘Aren’t you going to go to my conferences (especially in high school)?’ ‘No, I don’t need to worry about you. You’re getting good grades and you don’t cause problems. I have to deal with your brother.’

I’d go up to my room after dad got done with me. Sometimes, she’d come up and try to console me. She’d say that your father loves you, he just doesn’t know how to show it. Obviously. Why didn’t you protect me? Why didn’t you stop him? Why do you hit me when you’re frustrated with dad or my brother? I didn’t do anything. Why are you so strict with me but you let my brother do whatever the fuck he wants? You don’t smell the pot and vodka on him when he comes home every night? (from 13-on) I don’t care what the neighbors think. Why do you? Why does everyone come before me? Why didn’t you leave? (Later answered as ‘people didn’t do that during that time period.’-Yes they did.) Why did you forget me at graduation? No one offered me a ride home and I was once again a laughing stock on my last day of school. I thought parental love was unconditional. That went out the window when you found out that I’m gay. That took years for you to get over. It’s funny how your gay son is the normal one and your straight one and my straight cousin are hot messes. There are worse things than being gay.

I don’t visit now, other than for medical reasons, because I don’t want to. I don’t want to see dad at all and I’m a little miffed at you now. Even now, as soon as you think we’re going to get into some sort of emotional discussion or discussion of something that happened in my past, all of a sudden, you have to get dad lunch or Brooke just walked in the door or Damien’s a hot mess and you don’t know what to do with him, or David needs new pants so you have to go to the store and get them for him. Everyone comes before me.

The other day, I put up a video of me in the middle of a cluster attack. I wanted people to see what they are and to see the pain they cause and the damage they do. Most people wrote something on my wall. My father-in-law wrote on my wall for both of them. You sent me a a text apologizing for not being on the computer lately because it was going bad. Wtf? You always say you want to be part of my life, you want to know what I’m doing and you want to know how I’m doing. Text, call…’I don’t want to call. I don’t want to interrupt you.’ Interrupt me?! I’m disabled. I’m not doing anything.

I’m done.

While I didn’t go to the psycho this week, something of importance did happen. On 11/Jan, a headache cycle that had been building since Christmas finally came to a head; and what a glorious head it was. On the 10th, the headaches gained intensity, but didn’t really spike all that much. They stayed between a 6/7 for the most part, but the meds weren’t really helping. The next morning, I felt like staying home, but I didn’t want to cancel on the psycho, so I went. I was in obvious distress as the morning started out with 5/6 right off the bat. I had to take a Soma just to get though. (You really can’t do the EMDR with muscle relaxers on board.) So we just talked. I even talked to her about going to the ER. I also had to wait until Safeway came to deliver my groceries. Of course they didn’t come until almost 19:30. By 12:00, the clusters were spiking every 15 minutes at a solid 10 or better. The baseline headache did not go under 8 at any point. It was something like 10 for 5 minutes, fall to 8/9. The day before, they spiked every hour to half hour, but not as badly. By the time the groceries came, I was a hot mess.

I tried to get Major, my friend who lives down here, to come get me to take me to Mayo, but, let’s say, there were issues. I grabbed an Uber and went straight to the ER. I couldn’t tolerate the pain any longer. It had to end somehow. The Uber driver was even nice enough to walk me to the door just to make sure that I was ok. I went through triage, registration and I think I waited painfully for about an hour before they called me back. At first, I was on a bed in the hallway bc all of the rooms were full, but I didn’t mind. They did vitals and all of that. The nurse took my story and then the ER doc came back and asked what she could do for me. I just said to make the pain stop. She called the neuro on call. By that time, I was incoherent. I told her the story as best as I could and she said to let her make another call.

They moved me into a room. (I have yet to have any medication, but they are trying to make me as comfortable as possible without it. They didn’t want to give me anything narcotic that might change my brain chemistry, or something like that. It was 23:30. By this time, I know I’m not going home. The neuro came back with a friend from the headache division to ask more questions. (I’m still fairly incoherent.) I answered the ones about the clusters and about the seizures. I had one while in the ER. They told me that I would be admitted and that they were just waiting on a bed. (Everything is a process there.) They gave me 50mg of Benadryl along with 80mg of Toradol in an IV drip along with saline. I asked them what the 50mg of Benadryl were supposed to do. I guess that the industry standard. They refused to budge. They couldn’t believe I could even tolerate 50mg and n0t be asleep. I finally got to my room around 1:30, I think.

More questions. Similar to DHC, I was asked all sorts of questions by a very nice nurse. The Benadryl+ IV was still hung, so I didn’t mind. I answered as best as my confused mind allowed. When asked my medications, I gave them my phone. There was absolutely no way I could’ve remembered them in that state. After the nurse, 2 more neuros. More questions. I evidently told the same story over and over again. They were satisfied. I must have dozed off somewhere around 4:30 because when I woke, my breakfast was sitting on the tray next to me. The nurse came back in and plugged a couple of leads that had come off of the wireless heart monitor that I had to wear back in. They don’t wake you. They let you sleep.

More questions, more neuros and headache specialists, seizure alarm goes off, between the narcolepsy and that new thing. They did a complete change in my drug routine. They withheld the Provigil completely. (That’s what keeps the narcolepsy at bay.) They wanted me to sleep to try to start repairing 37 years of damage. I was locked in my bed with the little alarm thing and had to call the nurse every time I wanted to get up or needed to go to the bathroom. They were not annoyed. They were happy to do it. I was given special socks to wear that I was allowed to bring home. The only thing I found really odd was that they measure your pee. They don’t test it. You have to pee in a urinal each time so that they can measure it. It was kind of weird at first, but you get used to it. Everyone was happy to do whatever they could and apologized if they couldn’t get to you the second you hit the button. They didn’t ask your pain level every three minutes and they always asked if there was something they could do for you like bring water or snacks, etc. The CNAs are trained to give medications, sponge baths and change your bed every day. Nothing is an effort to them. They are there to make you comfortable. You are the one in pain.

MRI/MRA normal, EKG normal. Team says to start DHE. There was always one doc that showed up in the morning and the head neuro would show up in the evening to explain what was going to happen. Everything was timed around the DHE. A half hour before, I would get the Zofran, Toradol and Benadryl. A half hour later, the DHE, only it wasn’t a bag, it was IV. Two minutes, nothing. I wasn’t laying there for two hours while the stuff turned me into a raging monster as some of you have seen (especially during the second round.) Meanwhile, I’m burning though IV sites. I finally have to get a PICC. It’s done at bedside. I don’t have to go to the Cath Lab. Right after the PICC line goes in, another nurse comes in to do the nerve blocks. They hurt. Super Orbital-both sides/Occipital-both sides. I go for botox tomorrow. All of this is done bedside. The only drawback was that I wasn’t allowed to roam around freely. (Fall risk)

Really, this is a preliminary comparison. I think I’d need another stay at Mayo to really see the difference, but some things stood out that were pretty clear to me.

• The team approach: I was part of the neurological, headache, medical team. They met every day to review my case and decide where to go. They kept me informed of their decisions and allowed me to voice my opinions.
• The team approach, while slow at first, allows them to adapt to situations more rapidly as they have taken more variables into account.
• Bedside care v. going all over the place to have procedures done. At DHC the nerve block and botox aren’t done in the hospital bc St. Joseph’s will not give the DHC docs rights to perform procedures in the hospital, thus emasculating them.
• I was on a surgical floor, but the nurses were cross-trained. Even the floaters knew how to deal with headache patients and would ask questions so that they could learn more. I’ve had to teach floating nurses how to program the IV box, I’ve gotten two fired, two CNAs fired and three nurses/CNAs assigned to other floors. We’re not even going to talk about Team India.
• Transportation to and from different parts of the hospital is much more efficient at Mayo.
• The level of customer care from triage to registration through discharge is excellent. People at Mayo seem very happy to do their jobs.
• The use of IV injected DHE for me was much more effective than IV drip.
• DHC is slow and resistant to change.
• DHC, however, has the different classes and activities.
• DHC allows you to roam freely around the unit. There are units where this is possible. I just wasn’t on one of them.
• Many DHC staff members both at the clinic and inpatient seem to simply be going through the motions. They’ve either burnt out or it’s become too routine for them.
• The food sucks at both sites!
• TV is better at Mayo. They don’t have the religious affiliation thing going.

I was in and out of the hospital here in 5 days and since then, I’ve only had a handful of clusters and migraines break out. I left Mayo with a 3-solid 3. (Maybe even a 2/3 if I’m feeling optimistic) That hasn’t happened at DHC in eons and in less than half of the time. I don’t know how long the blocks will hold, but I’m willing to give this route a try before going back to Chicago.