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A Better Picture

June 4th, 2010

I haven’t painted a very thorough picture of my daughter. To anyone who doesn’t get invited into her hellish inter sanctum, she looks and behaves like a typical twenty-something. Her friends know that she spent years hospitalized but they think it is weird.

“Why? What’s wrong with you?” They are incredulous.

There are no signs of her mental illness – unless she is symptomatic. Like last week. Then, she shuts her friends out. Both to protect them from her rages and bizarre behavior and to shield them from the truth. Through her tears she wailed that no one understands her. She was so alone. Now, she is back in their fold. Pieced together again. She was an “incredible friend” yesterday. She buried her friend’s pet rat at sea in a bamboo casket with a rose. A bit odd but this is her life. Eventful and bizarre but who is to judge what is worthy.

The cycle is shifting gears. So, maybe I will not have to rush to her aid anytime soon. Last fall I went five times. Each time was worst than the time before.  I stopped going in January and wasn’t called into action again until the end of May.

I feel that commitment is an extreme measure. She has a semblance of a life. If she didn’t, I would agree that she needs to be living in a psychiatric community or a hospital or nearby where I could better monitor her moods. In between the hellacious crises, she is living her life.

She needs the city to absorb her energy. She needs her friends who have accepted her as she is. She needs someone to piece her together when she falls apart. And, then, she needs that someone to go away.

She also needs what Social Security Disability can offer – the financial net and social services. I am sure that there is a way to make this happen without commitment. I spent last fall trying to get this done. After a couple of failed/thwarted attempts on the Social Security internet site, we hired a lawyer to do the paperwork. At our first meeting, he placed a phone in the middle of the conference room table and made a call to a fast-talking guy in Staten Island who, over the speaker, told my daughter to apply for SSD on her own, get rejected and when she has the rejection in hand, he will find someone to take the case. My daughter was in a very iffy state and it seemed senseless; get rejected to start the process felt even less linear than most things in her life.

My daughter is very intelligent. If mental illness hadn’t attacked her mind, she would be using her analytical skills in a literary endeavor. Instead, stacks of books sit by her bed – classics and thin volumes of obscure South American poets are in the tower with major American authors. She reads them when her mind allows clarity. Her memory and concentration are always at risk.

I write about her sickness. It crushes me. But, the illness is not all that defines her. She lives everyday the best that she can. She needs her freedom to do this. She is a shell of this person when she is hospitalized. She reacts violently to locked doors and authority. She said living in the mid-west felt like she had shackles on her lifestyle. I cannot ask her to move. I feel like I cannot take away what few pleasures she gets from life.

Basically, right now I feel that I cannot impose my needs on her. Maybe it is my lot in life; that I have to be available to glue her back together. Maybe I have to learn skills that will make it less difficult. I don’t know. What I do know is that I am privy to the worst moments of her life and that there are many more that comprise the bulk of her life.

I feel like the friend who is getting a divorce and constantly needs to rehash the same thing over and over again. You want to be supportive, but in the end, she just has to work it out on her own.

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  1. June 4th, 2010 at 09:17 | #1

    Praying for you and your daughter. Keep writing and we’ll keep reading.
    Sending hugs,
    Carolyn

  2. June 4th, 2010 at 10:15 | #2

    I left another comment just now in the other thread, that I don’t agree with the therapist saying to commit her. Everyone has a right to reside in a least restrictive manner. It certainly is not how to gain SSI if that’s what the therapist implied. I don’t know about an attorney being needed either…? I did the whole thing on phone interviews w SSI ppl, long phone calls, that are recorded etc if the person cannot attend a in person meeting, due to their illness, etc they do this. My daughter was mute at the time, so I was “sworn’ in basically to give the info needed. Yes, it can be rejected, but you just re-apply. They actually help you do that. It took 9 months from start of app to receiving it for my daughter so it is tedious.

    She sounds like a really great free spirit. I hope this recent shift holds on long for her. My daughter loved having pet rats. I had to get over it. When she was in the hospital one last one, died. I buried it for her like she would have, all the flowers and little stone markers and all.

    You’re in a situtation where you want to let go and don’t want to, it’s a gut wrenching place in our hearts to be. I hope you find peace today, and have a nice day doing something you enjoy. I say that to myself too.

  3. Kris
    June 4th, 2010 at 11:14 | #3

    Thank you, Carolyn. I will keep writing now because it seems to lessen the pain inside. I let it go a bit by articulating it. Even though I realize that it does sound like I am talking in circles. Just trying to figure it out…
    xx

  4. Kris
    June 4th, 2010 at 11:25 | #4

    Nine months – compared to a lifetime.. hum. I think we should try it again. The last time she tried to apply over the phone and it was a mess. Maybe this time she should go to a SS office. If I could do it for her, I would. My husband and I tried one day last fall and were told that because of her age, she had to apply on her own. This was an hour into the interview.
    I feel selfish even saying that I am tired and frustrated. Mostly because it really seems to help when I step in and do my mom thing. And, I shouldn’t complain that it is hard… I don’t really know what I do. Just be there. Give her someone to fight against. Absorb the bad energy and take it away with me.
    Thanks for your insight into this situation, Stephany.
    xx kris

  5. June 4th, 2010 at 19:44 | #5

    I really, really like your daughter. Thank you for sharing more details about her and her life. I can totally understand now why you would not want her living in an environment that would cause her so much anguish. I can’t believe what she did for her friend’s pet rat….I say that with great respect because I have had pet rats all my life. Very few people can appreciate what smart, funny, sweet little creatures they are (they look at the tail and say “yuk”. Hamsters can be mean and bite but they’re cuter and have no tail so people like them).

    Sometimes we just have to accept life on life’s terms. I fought the fact that I was the “parent of an addict/mentally ill person” but that sure didn’t change anything. I admire the way you’ve accepted it and do what you can to help her navigate through life.

  6. Kris
    June 5th, 2010 at 08:10 | #6

    My daughter is multi-faceting and I am relieved that I took the time to write a few more things about her personality that fleshed her out for the readers of my blog. She is often very sick, but she is also trying her damnedest to live her life. I want to try to support the positive even when I am overwhelmed by the negative.
    That is the thing about mental illness. The label isn’t the entire package, even though sometimes it is the overpowering, single-minded feature, there is my daughter struggling to get out from behind it. What a courageous fight she puts up!

  7. Aimee
    June 5th, 2010 at 08:11 | #7

    I am so glad I found your blog. You could be talking about me and my daughter. We do not have the financial resources to support our 24-year-old daughter anymore, she was approved for SSDI on her first application, mainly because her therapist and psychiatrist helped with the paperwork. After trying for 10 years to help her, we petitioned the court for guardianship and a public guardian was appointed. This has been a good thing for us as parents, but I don’t know how it will work for our daughter. She is very manipulative and fools people all the time. It was so hard to take this step, it feels like we are abandoning her, but we need a break. Her guardian helped her find a nice apartment and the funds to pay for it, and has shown up for weekend crises, and tells us all the time that we should not have to be the “go-to people,” that they are available 24/7. It cost a fortune to the lawyers to make this happen, but hopefully, we will be able to recharge our emotional batteries and have a better relationship with our daughter, because she isn’t wearing us down to the bone night and day. I only see her once a week, that’s all I can manage for now. I love her, from a distance. I’m trying to put the pieces of my life back together, but after 10 years of stress, crises, hospitals, police, car crashes and destruction to our home, it’s going to take some time. Thank you so much for sharing your story.

  8. Kris
    June 5th, 2010 at 11:14 | #8

    Oh, I know. I took a long break – from January to May and it really recharged my soul. But, now that I am back and in the trenches with her again, I am afraid of losing myself all over again. My husband and I have to share the responsibility. My daughter is a perfect candidate for SSDI but she will sabotage her application or not do it or whatever. I will help her but I feel myself getting sucked down the drain if I embark on this with her. It might be the only way to get it done.
    Thank you, Aimee, for commenting.
    xx kris

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