sapphoq shares her memories and parts of her life before and after her traumatic brain injury.
Showing posts with label Alzheimer's Disease. Show all posts
Showing posts with label Alzheimer's Disease. Show all posts
Monday, December 24, 2012
Christmas Memories
My mother married her drinking partner second time around. She was very much a functional-- but angry-- alcoholic. Step-dad was also a functional alcoholic. My mother dominated him though. She told him what to do and he did it. I went to live with my dad in my late teens because of physical abuse.
I was raised Roman Catholic but in my early teens I got curious about the other churches in the neighborhood. On Sundays, I started secretly [I didn't tell my mother] attending their services. On any given Sunday, it was anyone's bet whether I would show up where I was supposed to be or somewheres else. Sometimes I skipped church altogether, stopping at an Italian bakery and then just walking clear into the next town. Other times, I would go to the plain little Episcopalian church or to the Spanish Pentecostal one that shared space with the Presbyterians. Eventually, I got converted and found Jesus in a very fundamentalist way.
All of this searching started in high school. On the last day of our ninth grade religion class, we were asked what we had learned. I said, "I learned that I didn't want to be Catholic anymore." I had been exposed to the craziest of arguments against abortion, feminism, and why women shouldn't be priests. So I knew what I didn't want. I even knew a little bit of what I wanted. I wanted a church that made sense and wasn't boring. I also wanted one that didn't consider the life of a woman to be secondary to the life of a fetus. Thus started the trek in and out of various churches I had mentioned earlier interspersed with periods of avid pot smoking and drinking.
There was a few kids in our high school that were Children of God, a.k.a. the Family nowadays. I went to the commune in New York City with them at least once. There was a gym teacher who was Christian Missionary Alliance only she spoke in tongues at the Charismatic Catholic prayer meetings on Wednesday nights down the block. She was at odds with the Children of God kids. The administration of the Catholic High School was at odds with her.I had another friend who was Pentecostal with a Jewish twist. We shared an illegal bottle of Moyen David in a local park on several Saturday afternoons. She was a lot of fun. We poured through a Jewish catalog for young people and freely co-opted whatever we wanted to out of that. I wound up in an Assemblies of God church and there I stayed on and off for a few years. For several years, including after my exit from my mother's house, it was either Jesus or drugs. I could not conceive of a life without either one.
My mother, being herself an addict of the alcoholic variety, got along with me fairly well when I was [unbeknownst to her, or at least unacknowledged by her] getting high and drunk. She was enraged whenever I was into one of my Jesus freak [that is what it was called in those days-- we were young and turned on and joyfully proclaiming the Word of the Lord to anyone who was around, whether they wanted to listen or not-- not as a slur, but just what we young people were known as] periods.
The second to last straw was a boyfriend who was also an Aggie [Assemblies of God member]. He was twenty eight years old. But he was very respectful of me and my age and did not so much as French kiss me. There was no pressure to have sex. He didn't want that. We held hands and dated in a group. That is to say, we attended church functions together with a group of other young Jesus Freaks who were also Pentecostal. Sometimes after a service, a group of us went out for pizza. There were no clandestine visits to his bedroom [he lived with his mother], no motel rooms, no getting naked in the woods, no discussions about birth control. There was none of that. I was probably safer with him than I would have been with boys of my own age. My mother found out that he was twenty eight and she beat me.
Several months later, she showed up with my step-father at the Aggie church. They were both drunk. She dragged me out of the pew on my knees. I had rug burns on them for several years after. She then threw me down the church stairs. There was no choice. I left with them. I was afraid that I was going to be shot. There was a gun in the linen closet. She was that drunk. The church people prayed as I was being physically mauled and hauled out of there.
Once home, a long period of beating me with an umbrella started. My mother would take her turns at it, yelling her head off while doing it. Then she would sigh as if she was tired and instructed my step-father to take over. "Hit her, ______", she would say wearily. "Hit her." Thus he earned a nickname from me for the next several years. Jellyfish is what I called him privately. He was spineless. After several hours, I was allowed to retreat to my bedroom. I was sore, beat up, and the tears were flowing.
The next morning, my dad called. He called immediately after my mother had left for work. [My step-father left earlier]. "Are you okay?" he said. "I don't know." He insisted that I come live with him. One of the church elders had called my dad after I was yanked out of the church the night before. No one else in that church did anything meaningful to protect me. The pastor got his friend the police chief to type up a letter banning my mother and step-father from the town that the church was in. But that was after I had moved and was safe at my dad's. I'm pretty sure now that the letter with its threat of arrest was legally uninforceable.
So I went to live with my dad. I wasn't ready to contact my mother by that Christmas, being only three months later. But Dad insisted that I buy my mother a present. I left the presents on the radiator in the hallway when I was sure she wasn't home.
My mother had always been funny around Christmas. I would see my dad on Christmas day. He would give me some really nice presents. I would take them "home" [to my mother's house]. She would throw them out. After a few years, my dad caught on that she was doing this. He began asking me to leave the presents with him. But I couldn't do that. If I didn't bring the presents home for her to throw out, there would be hell to pay. Christmas became a mixed holiday experience for me. I loved my dad fiercely. But anything that my dad did for me, my mother trampled on. The gifts at Christmas were just one glaring example. I learned much later that my mother's actions were indicative of a classic double blind. Dammed if you do it, dammed if you don't.
My mother had a fake green tree with fake snow on it. We would decorate it and she would make cookies. In my teens, I was allowed to have her version of a Brandy Alexander-- brandy and chocolate ice cream mixed in a very large round goblet. My dad had an aluminum tree. He loved Christmas and he would sing all of the Christmas carols and traditional songs. Once I was living with him full-time, Christmas became a thing of joy. I continued my mixture of Jesus or drugs cycles. I did go to midnight Mass with Dad at the Roman Catholic church up the street from him. He allowed me to do as I wish regarding what church I attended or didn't attend. He expressed his opinion but allowed me the dignity as a late teen to make up my own mind.
People get older and the years passed. I tried on several more religions, got clean, discarded all religions once I found that I could stay clean without a Jesus, got honest with myself about what I didn't believe in. I came out as bisexual. Had lovers. Had break ups. Fell in love. Got married to someone who is also clean and a non-theist. Dad got married two more times. He came down with what we now know is Lewey Body Dementia. His third marriage failed. It was my turn to give him a safe place to live.
Dad is now showing signs of Alzheimers' as well as the Lewey Body Dementia which two neurodocs independently diagnosed him with. He is in group living in a supervised adult residence. [Not a nursing home]. Dad continues with his determination to do as much as he can for as long as he can. His brain scan shows literal holes. The neurodocs don't know how it is that he can still dress and shower and eat on his own. I do know why. It's sheer will. Although he does not always know that his brain is failing, he continues to grapple with some really tough stuff.
The last couple of years, I took Dad to Mass at a church near his home for Christmas twice and for Easter once. He has a harder time in crowds now but he does want to go to church for Christmas. This year, we are going to a late afternoon Christmas Eve Mass. The Catholic church I found for him in his community is small and intimate and friendly. They have a choir. [Dad and I both love music]. Tomorrow, my partner and I plan to eat Christmas dinner at Dad's house. We've done this for several holidays now. The tables are pushed together family-style. The other old folks and Dad and a few other family members all sit together. Staff take pictures and keep the food and good times flowing. I am grateful that Dad lives in such a homey place. It is clean and comfortable and safe and he is thriving there.
Being atheist, I celebrate whatever I want to. Yes, we do celebrate Christmas. I am lousy at picking out presents for people. And horrible at wrapping them. As we do every year, I take my partner to the mall. Partner picks out what partner wishes for gifts. I buy them and have them wrapped or buy prewrapped boxes. So while there aren't any surprizes for partner, at least partner is assured of getting stuff that partner wants. We've tried several other ways through the years and they just didn't work. We also buy presents for our extended families. We don't have much money and we are very careful not to overspend. We don't do much of the charge now, pay later stuff either. Cash is king. We have been blessed with some little grand-nieces and grand-nephews. I really enjoy seeing them. Partner is in charge of their presents, because I am so abysmal at these sorts of things. As for me, I am now equipped with an e-reader. The e-reader enables me to read for a long period of time. Before the e-reader, because of the traumatic brain injury eye problems and perception problems, I could not read for more than a half-hour at a time, and frequently for a lot less than that. So my major gift this year is a gift card for the e-reader. I love reading, and getting the e-reader last year gave me back the joy of reading that the t.b.i. had stolen.
I also celebrate the Winter Solstice. The solstices and the equinoxes are astronomical events. Which makes them practical, not woo-woo or new agey. [I dislike New Age stuff]. I celebrated this weekend with the dog in the woods. We go to the woods almost daily. The dog is older now but she is happy there. Both of us are.
I celebrate the festival of Lights. My Christian friends celebrate the festival of the Light that has come into the world. A Jehovah's Witness friend doesn't celebrate any holidays. Some folks celebrate Chanaukah. Some celebrate Kwanzaa. Some celebrate various combinations of the wintertime holidays. Some celebrate none. Christmas started as a co-opt of the Roman holiday Saturnalia. It was [and is] a common practice for the Holy Roman Church to co-opt pagan holidays, add some Christian, stir, and pour out a new holy day. Thus, although folks have been celebrating various festivals of Light for centuries before what we now know as Christmas, Christmas was derived from the very pagan Saturnalia and grew into its own.
Now we have Santa Clauses. I read that the major company that sells cola products started the American Santa Claus as a way to sell sodas to kids. I haven't done any research on that claim yet. So there I have to say, "I don't know." At any rate, the lawns of houses in the United States seem full of plastic Santas and sleds and snowpeople, wooden reindeer, and flashing lights. The stores promote Christmas shopping. Much to my major annoyance this year, the Christmas shopping season began with Gray Thursday-- the day formerly known as Thanksgiving-- instead of Black Friday. When I look around at all of the commercialism, I figure that Christmas has lost much of its original sacredness. It is easy for me to celebrate life out in the woods on Solstices, Equinoxes, and pretty near every day. Not so easy to get in touch with anything remotely holy on what Christmas has become. This is not entirely the fault of pagans. There are plenty of Christian households that do the presents and the decor also. At any rate, Christmas has now become loud and abrasive. I must prefer the quiet solitude of the woods.
I do not believe there is a war on Christmas. Or, perhaps if there is one, this war is not solely the makings of the godless masses. If I am in a store or out in the community, and someone says "Merry Christmas" to me, they are not saying, "You are a no good secular humanist, atheist, non-theistic bum so go to hell." It's okay for them to say "Merry Christmas" and okay for me to respond in kind. This is my choice. I am an atheist. I get to celebrate everything that I choose to celebrate. If there is a war, let's have a war on commercialism. Forget the war on Christmas. I just don't see it.
[Christmas in public schools is another matter which I will not be addressing in this blog post. The public schools with their renamed winter concerts and no prayer over the loudspeakers and no preaching and stuff like that is an entirely different situation. As an atheist, I don't accept the "blame" for that. There is a law or set of laws that is responsible for secularism in public schools. I believe they are referred to as the Lemon Test: http://russellandduenes.wordpress.com/2012/11/14/public-schools-and-the-lemon-test/
and
http://www.ehow.com/about_5285467_lemon-test-used.html
have some preliminary information on the Lemon Test and explains it far better than I can].
People saying "Happy Holidays" to each other [in non-public school settings...that question of what to say in public schools I have left to the Supreme Court at this moment] feels a bit dishonest to me. I celebrate Christmas and Solstice. I will wish folks either one generally. I don't celebrate the birth of the baby Jesus because that is not Christmas for me. Christmas is a remake of the Festival of Lights and as such is not a threat.
So to those who celebrate Christmas, I say with all sincerity, "Happy Christmas." To everyone else I say, "I hope you had a splendid Solstice/Chanaukah" or "Happy Kwanzaa." Or just a simple, "How are you? I wish you well."
sapphoq on life
Saturday, December 01, 2012
Neurotypical Sharks, Purple Cow Teeth, and Christmas
During an uncle's wake, a cousin with the aplomb of a blown tire announced to a small group of everyone there that I am autistic. And my first internal reaction was along the lines of "What the fruck?" At that point in my t.b.i. recovery I was still moving awkwardly and using a cane full-time. I already felt like a dweeb, a non-typical swimming in a sea of neurotypical sharks-- there are some similarities between the first year of my post-head trauma being and what I imagine to be the experience of some folks who have been diagnosed with Asperger's.
[Now that the Asperger's diagnosis in the new and upcoming D.S.M. has been removed, I perceive of a riot between the Asperger's Pride folks and the folks over at Autism Squeaks. I suspect that now people will be even more able to ignore the reality of Aspies as well as the existence of auties that have grown up from the oh so cute autistic kid phase into adults who still have autism and perhaps aren't as tractable. It's the whole three seconds after a period thing and two seconds after other punctuation thing that I was fortunately never exposed to. That is to say, I can understand why some diagnosed teens and adults rebel against that sort of thing. Just as I understand why the conversation between most N.T.s appears to be stifling and superficial and boring. But I digress. My shrink who knows brain injury assures me that the reason why my multi-tasking skills are pretty close to non-existent is because I am highly distractible. Seems I can't satisfy the stupid word fixer thingy no matter how I spell that word. So carrying onward...]
I remember being tested as a preschooler. I even remember where I was tested and recognized the building twenty years later when I went there for a different reason. I remember my dad remarking once that I had been tested and that "they" had told him that I was retarded. "She's bright," my dad had retorted disgustedly, "I can see it in her eyes." He left the office dragging me along to our next adventure. In retrospect, I'm glad it worked out that way. Her recommendation to institutionalize me fell on deaf ears. My first words a year later was "Merry Christmas everyone" back in the days when the winter concert was still called a Christmas concert-- actually it was a small private school that I attended (I would have been lost in a big one)-- after the rest of the class had finished singing a Christmas song. Whether the testing person had said "autistic" or "retarded" really does not matter to me now. She could have said one or the other I suppose. My dad always had told me "retarded." Now my idiot cousin was telling the congregation around her at her father's wake that I was "autistic." Whatever. T'was an awkward and angry moment.
During this break right here, I present to you a YouTube video which I did not make-- haven't done that yet-- but which amused me:
Back? Okay, well. Sharing U-Tube videos is the blogger's easy way out I suppose. Let me think about that for a micro-second. Nope. Don't care if it is.
I didn't say anything back to my cousin. After all, her father's dead body was in the room right there. Her mother was always outspoken to the point of social awkwardness for the folks around her. That didn't seem to bother her any. It wasn't terribly comfortable for the rest of us. My aunt had been diagnosed as a paranoid schizophrenic, but she showed amazing insight for her condition I've been told. When she needed a med adjustment, she recognized this and would sign herself into the clinic for care. She was not able to work but she had three kids (including the loudmouth that I have described to you), kept a clean and organized home (something which has totally escaped me since the t.b.i. but I was never real good at that before-- now it's worse), and had a husband (my dead uncle) who adored her. I had figured that my aunt's super direct-ness was due to her neurological condition (uh, everything is neurology) but perhaps I was wrong. Seems my idiotic cousin had the same trait in spades.
My dad was showing definite signs of cognitive decline back then. The car accidents hadn't started up yet. But he was in the condition that folks describe as "vague" that happens just a bit before someone is carted off to the doctors to find out that the something that is wrong is called dementia. What kind of dementia is a bit of a conundrum at first and sometimes for years afterwards...ah, but I digress again. He showed up for the wake shortly after that, towed along by his then third wife. After less than a half hour, they left. Another aunt said, "Oh, she keeps him from the family." I'd known for awhile that she had done her best to keep him from me. I hadn't known that anyone else had noticed it. But then again, I had never asked or talked about it to any of them.
I went to see Dad today at the assisted living home. One doc here has stubbornly insisted from the first time he seen him that Dad has Alzheimer's Disease. The rest insist that it is indeed Lewey Body Dementia. I hadn't seen any signs of the Alzheimer's myself until this summer when he was hesitant about stepping on a black mat at the diner. But since then, his cognitive decline has also become more steady and noticeable.
Dad had been using toothpaste to hold up his dentures. So I got him the right "glue." I said to him, remember when you used to recite the Purple Cow rhyme to me? His face lit up immediately. "Yes!" I recited the little rhyme to him. "I never saw a purple cow. I never hope to see one. But I can tell you this right now. I'd rather see than be one." [Shel Silverstein I presume. Many of the little ditties and songs my dad recited and sang to me as a child turn out to be from Shel]. "Well, the purple cow got big purple teeth," I told him. "The tube for the glue is purple." I could tell I had lost him at that point. He was still chuckling over the rhyme. At any rate, he smiled and put the denture glue in the proper place by his soaking cup. I love my dad so much.
He kicks me out when he's had enough. He will tell me that it's getting dark [I don't drive much at night anymore thanks to my t.b.i. induced photophobia and resultant problems with glare at night and every other time] or that my dog is getting cold in the car or that my husband wants me home or that he wants to get back to hanging with the crew. That makes me smile. Because I know he is enjoying having his own space and his own life separate from mine. Today he was elected the president of the Resident Council. Something that I figured was inevitable since his nickname is "the Mayor." I left singing an altered rendition of an old song, "Happy Friday, Mr. President" and a promise to bring the Christmas cards on Monday for him to sign. He wants to do this and so we do.
Now this whole Christmas thing. I am an atheist. If you wish me a "Merry Christmas" either because you celebrate it or because your employer tells you that is what you will say after waiting on me, that doesn't hurt my atheist sensibilities. You aren't cursing at me or telling me to go to hell or endeavoring to take a swing at me or shooting me with your gun. Folks who know me well and who choose to will wish me a "Happy Solstice". One friend in recovery calls me every solstice and equinox to wish me a happy one. I appreciate that but I am not on a campaign to get the whole world to say "Happy Holidays". It seems almost dishonest to me. For you to say, "Happy Holidays" if you celebrate Christmas. People that I don't know well have started once again to say "Merry Christmas, I won't see you til after it" and hesitate. "For crying out loud," I tell them, "It doesn't diminish me as a human being if you say 'Merry Christmas', that's fine." If I sneeze and you say, "God bless you," I figure well you have the freedom to practice your religion or the freedom to carry on that tiny superstition that the soul leaves the body briefly when one sneezes. Whatever.
The whole public school fiasco is a different ball of wax. There's something called the Lemon Laws or possibly the Lemmon Laws-- not quite sure of the spelling there-- which is the legal reason why public schools are supposed to be kept secular and religious instruction left to the parents or guardians as it should be. That too is a subject for another blog-- perhaps radical sapphoq-- if I ever get done with my investigation into the troubled teen industry.
I've been devoting hours and hours every day to that one. Every time I think I'm done with the first section, some more convoluted stuff surfaces. I am both amazed and horrified. And some more stuff surfaced tonight which I have to sign off and alert some folks to. Now that I've zipped all over the place, I am signing off and heading out. Ta ta folks. Till next time.
sapphoq on life coming up for air.
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