Five hundred twenty-five thousand
Six hundred minutes,
Five hundred twenty-five thousand
Moments so dear
Five hundred twenty-five thousand
Six hundred minutes
How do you measure, measure a year?
In daylights, in sunsets, in midnights
In cups of coffee
In inches, in miles, in laughter, in strife
In five hundred twenty-five thousand
Six hundred minutes
How do you measure a year in the life?
How about love? How about love?How about love?
Measure in love
Seasons of love
Seasons of love
the lyrics of 'Seasons of Love', from the play RENT.
this morning, i walked out of the elevator and walked to her hospital room. she was was standing there. her bed was neat and tidy with the plush animal horse sitting on top.
"hi! i've got snacks!", i said as i motioned with my hand. we walked into the open area and she ate her snacks. i told her she was going to be getting out of there in about 5 days.
"oh!", she said with excitement in her voice.
--
in the next few hours, she talked about many, many things and walked and looked out of the windows at the autumn colored leaves.
--
i was sitting at the round table and she was standing across from me. the sun was shining in through the windows and i thought about how the clouds looked brilliant with the sun shining through. she was talking about a lot of things, again some times things in her world, mostly not lately. but i heard this:
"how do you measure, measure a year?"
she was singing. one of her all time favorite songs from the play RENT.
"525,600 minutes", i sang back.
"in daylight, and sunsets...", she sang back to me.
"it's all about hope" , as she began making up her own lyrics to the song.
"did you just say "it's all about hope?"
"yes".
"i think you are right".
-
this entire thing has left me completely in awe and amazement of my daughter and of the human brain and mind. she is definitely shining through some very dark skies of late, i feel she is an inspiration and she is so right, it is all about hope. i think, that i am very glad i never gave up hope that's for damn sure. we sat in the audience while her sister sang that song in choir, oh-- so many years ago. 'tis the season for love, i think it's a healing force.
--
today
when she started to sing that phrase "how do you measure a year", it was as if i took a double-take.
what?
i think to myself.
she's singing the song from rent.
it took me by surprise. i was beyond tired this morning. as i got dressed she was my motivation, because i know when she is "coming back". that's when i increase time with her, and she increases visiting time without wandering away. she's lucid for the most part and this is when i tell her about what has happened because she has said, "what happened?". she has commented "I feel like I was in a coma."
catatonia is not an abstract idea. i believe her mutism was part of a walking catatonia.
people with SZ dx have told me they have experienced this before and knew everything that was happening around them, and could hear everyone. with my ideas, thoughts and discussions with the psychiatrist we have concluded that she could be vitamin B et al deficient, therefore the addition of mega-B's have been added to her daily routine. the psychiatrist has heard every word i have said and my words have held a decade of thought. i am grateful for someone thinking with me on behalf of my daughter. the word trust comes to mind, i do not think that needs expanding upon.
but, that's for another day.
--
there is one person i know and she "left" in 2005. she said these last words to me: "fight for me mom, this is bad, really bad". i did fight for her, and still am. she could feel something coming on, and i feel confident one day she may be the one to tell us all what happened.
--
in the meantime, she deserves to live in a least restrictive environment. many words begin to have more meaning these days. i use those words.
--
summer 2005
she stood in the bakery with me and i turned to her and said, "what do you want?".
she didn't answer.
i looked at her face.
her upper lip was beaded with sweat, her eyes were glazed and lost in appearance.
"fight for me mom, this is bad, really bad".
~
"it's all about hope", my daughter said to me, on a lovely autumn day 4 years later.
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13 comments:
Hi, Stephany,
I have been following your posts and your comments on other blogs. I am curious to know what exactly is your daughter's current condition? Today, you mentioned catatonia which is no longer the case. Did your daughter end up with other (more medically diagnosed and debilitating) conditions as a result of the drugs, or is the situation that she seemed severely mentally ill despite the drug treatments? I apologize if I am going over old ground that is well known to the rest of your readers. I also want to add that the human mind and spirit is an incredible thing, which your daughter seems to be demonstrating. And, of course, there is love.
Best regards,
Rossa
Catatonia is a way of "not reacting to content". To be identified with and react to content also means to be vulnerable, maybe get hurt, suffer. If you can move out of that identification by not reacting anymore, nothing and no one can get at you. Catatonia is a safe place to be in. But while you can get to this safe place consciously through awareness, catatonia takes you there unconsciously. Thus catatonia controls you, while you control your awareness.
It's a common misconception that "catatonic" people don't sense and perceive anything. They perceive everything. It's just that nothing of what they perceive has got anything to do with them anymore.
There are many ways to think about the situation, no one is defining catatonia with her, it was an interesting idea, that no one really knows what she had, except there are some ppl who have told me catatonic states were places they felt safe in and eventually came out of it.
Her story began as a mis dx for childbipolar, the psychotic break happened at age 17 that has lasted this long, while having traumas of hospitalizations as a young adult I always considered that as a reason for the mutism, I also considered it being clozaril side effects.
One thing is, she is talking now, and as she once did before, hopefully she will be the one to explain it all one day.
For now, I have not lost site of who she is, and have always known she hears me, treated her like she did too. She'll always have me for support that is for sure.
I enjoy all of the comments and support here, hoping to shed some light into a world many don't understand, the system, the psych drugs, the people.
For now, i leave the thought that my daughter is doing well, and that's pretty much as far as my tired self can go these days for deeper commentary.
Steph, this post brings tears of joy to my eyes. It is indeed all about hope. Hope sometimes is really all we have. I can only aspire to be the mother you are.
My son was in a psychiatric day program and he simply did not come around to reality all that time. By the way, he was on clozapine, which now I claim is just another ineffective medication but with more weight gain effect. I have noticed that while there can be many positive things associated with being institutionalized (I can't believe I said that), the negative is that the person can appear more psychotic than they actually are and can prolong that behavior for a while after being released. Interestly, I have seen catatonia in a non-pychiatric patient, who happened to be African. I have heard that catatonia is more prevalent with Africans. In her case, she became catatonic after being stuck in an elevator. I have never seen such fear registered as a bodily reaction.
thanks for all the support, Noe Noe, she was singing this song again today.
Rossa, interesting, yes I agree the psychosis can get worse in hospitals, it's why i'm glad she's getting out. She never gained weight on clozaril strangely. Zyprexa, years ago caused a 100lb+ weight gain for her.
Rossa: Of course the system makes things worse. Both with its focus on "symptoms", "symptoms", and even more "symptoms" - instead of focussing on the healthy part of the story. And also by providing a kind of "treatment", that more often than not is a repetition of the trauma that initially caused the crisis, a trauma on top of a trauma. It's possible to at least to a certain extent escape a bully at school, or an abusive parent. It's not possible to escape anything, when first you're incarcerated at a locked ward with staff that easily outnumbers you whenever you try to protest any of their orders, and no chance to get out unless you're willing to deny yourself, your thoughts, your feelings, etc., more or less entirely: "Yes, I am sick, I am the problem."
The problem is that when you're in an emotional crisis it's very hard, often impossible, for you to control and suppress your rebelling emotions, and put a good face on it. So, you fight, the staff strikes back, you fight even more, the staff strikes back even harder... The "symptoms", the "illness", worsen until your rebellious spirit breaks, until you've learned the lesson: "Behave, or else...".
Catatonia, and mutism is a form of it, is not a psychiatric "symptom", it's a natural flight - or actually freeze - mechanism, a response to danger: http://www.youtube.com/watch?v=wVPSKSTjXiw. But, well, when it comes down to it, all psychiatric "symptoms" are in fact natural responses to life situations.
N.B.: Of course I'm only talking about emotional, psychological crisis here. Intoxication, for instance caused by psych drugs, is a different story, while it often finds expression in the same symptoms as emotional distress.
Marian wrote:
"...and no chance to get out unless you're willing to deny yourself, your thoughts, your feelings, etc., more or less entirely: "Yes, I am sick, I am the problem.""
Yes, that's a curious thing, isn't it? One must deny one's own version of reality, in order to fit into somebody else's?
I've been treated like that, quite a lot, during my life (which I think indicates the inflexibility of others in accommodating me!). I got bored with all the conflict, in the end, and I just tend to bounce others' ideas back at them, with my own personal emphasis added! I find it a very effective form of both defence and attack, simultaneously!
Matt
Thanks, Stephany, for this beautiful post. Hope, vitality, humor emerging from such confinement are deeply moving to see. The song is so perfect (and I haven't heard it before) as your daughter's inner music. What great strength she has!
It's great to hear she's getting out.
All love to both of you --
John
For what it's worth, I read somewhere that catatonic forms of schizophrenia are more common in Africa. Cultures are interesting in their diversity, even when it comes to psychiatric behavior. Hmm, yet another example of why I believe schizoprenia is emotional, not biochemical in orgin. Emotions produce a biochemical effect on the body, but if the emotion or thinking pattern improves, so does the biochemical reaction to it.
I do know that cataonia is a very real thing.
And Marian has it right when she talked about 'not reacting to content'. And also the 'flight/fight/freeze' dynamic.
Rent is such a wonderful musical. It really does bring out the hope in almost everybody I have seen. No wonder there are so many passionate RENTheads.
Also symptoms are certainly a form of communication. If symptoms are treated AS symptoms then something is lost.
This is so beautiful!
Thank you Stephany.
Sorry dear.
I didn't read your post and I'm only listening to the music.
I'm already crying and I'm sure if I read you I will be so sad that it will last for more and more time.
I confess to you that I'm not that great.
But it will go away.
I love you too much!
Ana
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