Heavy Stuff

So, this isn't going to be much of a happy happy joy joy post. If you don't want to read something heavy and totally self-indulgent, I suggest you stop reading now. Really, I wouldn't blame you. I just have a lot of stuff to get out and some of it goes way back to stuff that happened years ago. This is another far too lengthy post. I promise I'll post shorter, lighter things. Just not today. No really I will. The existence of JustinBobby is all the proof you should need.

Some of you may know the background on my sister and some might not. She's a schizophrenic and lives in a group home. She had a nervous breakdown in 1989 when she was in the Army and never recovered. Her diagnosis is chronic and non-responsive to treatment, meaning there is no hope for recovery, no matter the drugs or therapeutic intervention. She is very much a danger to herself and others. She is a very, very sick little girl. I say this and she's 3 1/2 years older than me. When my Dad and I visited her Sunday she was clearly overmedicated. I've seen her out of it and highly delusional, that's not anything new. This was different though. She was drooling and could barely walk or stand up. She seemed to go in and out of a major fog. She was very drowsy and sometimes didn't seem to know she was in this world. Two other residents came up to Dad and me telling us that she was overmedicated. These people may not be the complete picture of mental health themselves, but that doesn't mean they are oblivious. It was odd how, both times, both people, when telling us, were so sure of what they were saying, it was as though for that moment they were cogent and clear-headed. Dana was taken to the doctor today, but no one called me back to tell me what happened. I'm sure her care provider will call me tomorrow, if he doesn't, I'll call him.

I'm really worried because if this is how she's going to be from now on it is the beginning of the end. But I don't want to get too ahead of myself. There are plenty of other things to worry about. Do I need to find her a new care facility? That's a whole issue in itself. Do I need to request a new doctor or battery of doctors at the Veteran's Admin? The only thing I do know is I'm not going to have her just being set in a chair to drool for the rest of her life. All of this is on my shoulders now and I just hope I make the right decisions. I can't believe I'm supposed to decide these things. It's surreal.

After my Mom died last year I was appointed her legal guardian (after lots of really bureaucratic-laden hell), which means I take care of her money and make decisions for her. She lives in a home and we are very lucky to finally have found a place that "works" for her. She's been there ten years now. Back in the early days of her illness, before we found this place, she was in and out of something like 17 facilities. Some of these places weren't equipped to handle her; some were nursing homes because we had no other options. Eventually they would get to a point where they couldn't handle her and would throw her out. Then she'd be back to living with us (a dangerous and chaotic situation) then bad shit would happen and she'd get sent off to somewhere else and then the cycle would repeat itself. Just because someone is mentally ill and even dangerous doesn't mean they will automatically be hauled off and that's that. Sometimes you have to live with them and I'm not exaggerating when I say it felt like a constant state of terror. I remember my normal days were pretty long back then---with school and a job 20 miles away, I was usually gone from 8am to 10-11pm. There were a lot of times I'd come home and there she'd be when I thought she was supposed to be safely tucked away somewhere. So yeah, a constant state of terror is pretty much what it felt like. My mother had a nervous breakdown and it basically broke her spirit. She never really recovered either. She was eventually diagnosed as a borderline personality, but that's another post.

Last year I was seeing a therapist and she said it was like I was having to deal with three deaths at once---one being the mother I lost, the second being the stable mother I should have had(except she was my best friend and I can't complain about that, all in all I didn't get too shafted in the Mom dept), and of course the sister I once had. I honestly can't convey what it is like to have a mentally ill sister. Only someone that has been through it can know what it means. I'm so fucking sick of colored ribbons for every fucking illness on the planet except for mental illness. If you happen to know without googling it, by all means, tell me what color that ribbon is and I'll immediately go out and festoon my car with magnets in that color. It's such a fucking taboo that you can't talk about because it freaks other people out. To talk about what happens with a mentally ill person is oversharing. It makes people uncomfortable and I get that, but it makes me far more uncomfortable than it does them because I have to actually deal with it. If she had cancer I could've talked about what I was going through in those early years; I could explain why I looked like shit and why I didn't seem very happy lately. But, it's kind of hard to say, well, my sister tried to slash her wrists for the 7th time last night, or she came up behind my Mom with a baseball bat and thank god my Dad saw her or my Mom probably would've been dead then and there. Or, she came in my room at all hours of the night last night because Jesus Christ just visited her room. Yeah, I can't imagine what you think of me for typing that out loud, but fuck it. These things happened. These are my experiences. It was the fucking reality (ironic word choice I realize) I was living in. It was traumatizing. I was trying to get my start in life. I had just graduated and lived at home while I attended community college and worked at a pizza place. I can't make sense of some of these things and there is very little support. There is no well-established group like AA for family members of the mentally ill. It's not talked about.

What really bothers me sometimes is that I remember how we shared a room and even the same bed when I was little. I can't hear "More Than A Feeling" by Boston, not ever without a flood of tears and the biggest pain in my heart because I remember her playing that song in her room so many times when she was in high school. I guess I think of that as her song. One day my Mom and I got to talking and it turned out she had the same reaction to that song. What really hurts is that she doesn't even look like the same person. I had gone a few years without seeing her, because basically I took a few years to be selfish. I knew my destiny was to have to deal with her, like it or not, so for years I had nothing to do with her until my Mom passed away suddenly last November. It might sound selfish to have avoided her, but that was the whole point. I knew it was a luxury to be selfish and that I had to seize the opportunity when I had it. I didn't want to have to see her and deal with who she became. She's not the same person at all. She doesn't look the same; I didn't even recognize her when I first saw her. That's what this illness does to you. An old friend went to see her against our advice ( and goodness we would have loved to encourage old friends to visit, but she's pretty bad off) and was basically traumatized. When I see her and spend time with her I look at her and wonder "who are you and why do I have to deal with you?" Seriously, there's this whole other person and they're very ill and yet for some fucking reason it's my responsibility to deal with and I don't understand that. I don't know who this person is and I don't recognize her any more than anyone reading this would.

I don't want to hear about how God never gives us more than we can handle. So does that mean anyone that doesn't have to deal with it, couldn't deal with it? Because I don't believe that. Nor do I believe I am strong enough for this. I don't think just because these are the cards she and my family were dealt that we are any more capable than the next person of dealing with this. I am, in no way better equipped than anyone else to handle this just because it's what I have to handle. The pressures of being a PhD student are pretty hardcore and balancing all of this is a very tough act. The only way I can handle it is to to tell myself that I am welcome to give all this up at any moment. The guardianship, not the PhD. Because the only way I can handle it is if I think I have the option of being selfish. I don't know if I really do. It's like having a child. And that really sucks for someone who has known all her life that she didn't want children. I actually felt it was a personal triumph of sorts not to have one. It's not just the fucked up genes, I just really never wanted kids. I've always felt very adamant about that. Mom was Dana's whole world and now it's me. I can't do the job the way Mom did but I am forging my own way. Even though I am kicking and screaming every bit of the way. I think that's another coping mechanism. The kicking and screaming.

I'll be damned if I "accept" all of this. I'd rather kick and scream than be stoic like I deserve this, like she deserves this. I'd rather bitch that I hate the fucking cards we've been dealt. Because, if I don't it means I have no choice. I'm not going to have to deal with this and like it too. That's just too fucking much. I at least feel like I have a choice for some reason when I give myself the right to hate this and to be very selfish in thinking about how this all affects me. I'm not going to sit back and smile and say this is the path that I've been led to and all that horseshit. Sometimes what happens to us is just fucking unfair and random and that's the rub of it. Sometimes there isn't a greater lesson or a greater reason. I used to think that about life, that challenging things in our lives were for a greater purpose or that we'd eventually find out the reason for all of it. Sometimes it's just hell that you have to endure. Sometimes there isn't a reason. We just tell ourselves this so we can cope because most of us don't want to think it could all be random and for no greater purpose. And that's all it is at the end of the day. I refuse to think that my sister being ill and my Mother too with her deterioration that there's a damn good reason for it. That it serves some kind of purpose. It killed my Mom and it changed who she was; it changed all of us. I used to have Faith. This stuff fucks with your entire paradigms. You know that all the circumstances of your life that make things bearable can be pulled out from under you at any moment. I'm not always this cynical about everything and mostly, I think I do pretty well given the circumstances, but when it comes to this there isn't very much comfort. She is so pitiful. This is an ache that will never go away. The only comfort I can take is knowing that my Mom no longer has to deal with this and that she finally got the respite she so deserved from all of this. I remember how at her funeral everyone kept saying "she doesn't have to suffer anymore" and it was what I kept thinking too. The pastor that gave her eulogy was a close personal friend of hers and his eulogy said the same thing too. It was just weird, because if you didn't know better you would've thought she died of cancer instead of a brain aneurysm.

There just is no way around or through this. And it's been almost twenty years. The thing about this that Mom and I always felt is that it doesn't get easier to deal with; if anything it just gets more difficult because now it's been twenty years worth of this. The very slim research on the impact on the family of the mentally ill seems to suggest the same, that it only gets more difficult for family members as the years go on. Which, WTF? Why isn't this worthy of study and why doesn't anyone care enough to research this? Why isn't there the equivalent of a well-established group like AA to help people family members? It's because it's taboo and it's not a socially acceptable illness. Oh my god, the shame and guilt cycle with this fucking thing. I was (and probably still am) very ashamed of her and then I felt guilty for that. But it's also almost like your forced into being ashamed because you honestly can't tell most people in your daily life like coworkers, bosses, and teachers what's really going on. I'm starting to get more open about it even when I can clearly see that the other person is uncomfortable and thinks I'm oversharing. That pisses me off when I know they wouldn't be that way if I were describing the latest round of chemo she went through. So, I've been reminding people of that too, especially when I have to listen to their stuff. I don't go around talking about it all the time, but if you share an office with me for over a year and you tell me all your stuff it's only fair I get to share too. I'm not going to lie for your sake and tell you my weekend was just fine when really I saw my sister, this person that I don't even recognize but am responsible for, drooling all over herself like some fucking nursing home patient. Okay, so I haven't said anything to anyone, and I'm just blogging about it, but I'm telling myself that I can talk about it if I want. I honestly do not begrudge anyone that has decided it was too much to bear and I truly understand why most schizophrenics don't have any family that is involved in their lives. That sounds harsh I know, but I sympathize and unfortunately, I understand. It's devastating.

Maybe it sounds melodramatic to say this, but I often think about a scene from a Hallmark Hall of Fame movie in 1992 or 1993 based on really great book by Sue Miller, called Family Pictures. The book is about a family and how they deal with an autistic son in the 60's when even less was known about autism. At that time the "solution" was to institutionalize them and forget about them. The story was told from a sister's perspective. Angelica Houston played the role of the ever-devoted Mother. The scene that I always remember is when he dies and the whole family is worried about how Angelica will take the news, because he was her whole life; she never gave up on him, not once, even when everyone else did (which was very much a parallel to my Mom in the early years). They're just sure she is going to go to pieces and have a breakdown. She goes out on the porch, a few tears roll down her cheek, she closes her eyes and says "Free. I am Free. I am Free." And you actually see the burden has lifted from her shoulders even as she grieves. I've never forgotten it. She encapsulated a mixture of relief and mourning. That scene haunts me.

My heart breaks and hurts so much every time I picture her in that home. I'll never forget the day we had to tell her Mom passed away. We drove up to the facility and she was sitting outside smoking (she smokes incessantly; it's a schizophrenic trait) and I didn't recognize her. She jumped for joy and was so excited to see me that she was crying tears of joy. "Oh look! It's my sister, she's come back to me. This is the happiest day of my life." She just kept saying that over and over. It never occurred to her of course, that the reason Dad, me, and a relative she'd never met pulled up in the driveway unexpectedly was because there was bad news. I'll never forget seeing her that day. That was probalby the hardest thing I've had to do yet. She is so pitiful. Thankfully, she took the news pretty well, because her mind doesn't allow her to deal with it. She cried for a few minutes and then went on like it was a "normal" day. She still mentions Mom and says she misses her, but her mind doesn't let her mourn or fully comprehend and for that I am truly thankful. That is a blessing.

If most of this post has been selfish, that's the entire point. This whole thing of having to deal with my sister is about me. It's me trying to release some of what I've bottled up for nearly twenty years. Of course I feel sorry for her, and I ache for her, but I'm writing this to try to deal with my experience in all of this. She doesn't have to deal with reality; I do. I'm the one that deals with the reality of Mom's passing, I'm the one that deals with how to look out for her, I'm the one whose shoulders all of this is on. And, I'm trying to get a fucking PhD here. Thank god I have this side to me that likes The Hills and mindless crap like that. I'd go insane without it. It makes me think about what Lily Tomlin once said in the "Search For Signs of Intelligent Life" when she played the crazy, homeless lady. She made a lot of sense out of being crazy, because, as she said, "once I put reality on the backburner, my life vastly improved." Damn would I love to do that sometimes. I resent the fact that I have to deal with this. I wish I didn't have to deal with this. I'm not some triumphant, selfless character in a movie. I hate this. I truly do.