10/11/13

Postscripts
“Abruptly the poker of memory stirs the ashes of recollection and uncovers a forgotten ember, still smoldering down there, still hot, still glowing, still red as red.”
- William Manchester -


Since I first began work on this site, I have continued to improve and adapt. Medications, therapy, and time have contributed to a much higher quality of life. My goal of expanding this site into a book is also extremely therapeutic.

I am not cured. I don't think I'll ever be. Every day is still a challenge. Every day remains a challenge for many of us with chronic depersonalization or any mental illness, and for those of us whose symptoms have lessened but never completely gone away.

I am still dealing with psychological issues from the past. And I have lost many friends who say, "Just get on with your life!" And, “Sandy, you look so normal, there’s nothing wrong with you!”

I do the best I can. I have to really believe that. I still have great difficulty "accepting" my limitations. But if others can't understand there is nothing I can do about it.

My partial improvement is especially frustrating as I know many who have returned to near normal functioning or full recovery who experience the beauty of crystal clear reality every day. It may seem selfish but I admit I envy those who have broken through "the invisible barrier" back into the real world. I am angry and depressed when a bad day, or week, comes over me when I have been doing well.

I still experience depersonalization and derealization twenty-four hours a day, seven days a week, even in my dreams. The derealization remains worse than the depersonalization; this continues to make going outdoors an uncomfortable experience though I don't avoid it. I still have bouts of severe depression, and feel fatigued a good deal of the time; I can attribute some of that fatigue to my chronic anxiety. And yes, twice in my life I have been suicidal, and that again has not been a desire to “punish” or “hurt” anyone else, but simply to “go to sleep” and be at peace; however I can say, I am fifty years old and still here!

Overall, I have found a greater level of functioning with my current medications and found better ways in behavioral therapy to cope with my illnesses on a daily basis.

I want all of you to find hope or comfort in my story, if only to know you are far from alone. There have been are those times I have wanted to die, and you must believe me that there is reason to live. Life may never be the same for some of us, but we can have productive lives, we can find some joy and purpose. We are all unique, each and every one of us.

Notes on My Mother's Death
My mother passed away at 2 a.m. on Wednesday, September 12, 2001, the day after the terrorist attacks on the World Trade Center and the Pentagon. As the old saying goes, it was as if she were "waiting for me to come home" so she could die.
When I returned to my home state on September 4th to start a new life, on my own, in a new apartment, recently separated from my husband, my mother seemed to be "doing fine" -- "fine" for an Alzheimer's patient nearly ten years in a nursing home.

I had actually felt my mother "died" about six or more years before this when she forgot who I was, forgot who she was, when I couldn't communicate with her at all save for some rather hilarious conversations full of laughter and nonsensical sounds and phrases. Then gradually all that was left were old fragments of songs we could share, without the words. Then sometimes she would only sit and stare or drop off to sleep. I felt each visit was an obligation, but in retrospect I see each visit was an opportunity to let go in stages that were tolerable for me.

Strangely enough, these were some of the best times we ever had, and it was so odd to hear the nurses on the ward say, "Oh, your mother says your name all the time, talks about you so much, she must have loved you so very much.

I saw her in March of 2001 -- six months before her death. At that time, she was in some other world, interacting (apparently without suffering) with the apparitions that populated her mind. But she was still very strong physically, and her death was truly unexpected -- congestive heart failure that came on suddenly and caused a rapid decline in only four days. And her timing, as always, was impeccable and somewhat unsettling. She was forty-two at my birth. I was forty-two at her death. Her passing marked the end of the first half of my life. The "old guard" finally fell. The most influential person in my life was fading away as the World Trade Center collapsed.

I had often imagined this scene since my childhood, witnessing my mother's death, seeing her body expire only to rise up again and attack me, seize me, and pull me into eternity with her. But I had lost that fear, and instead felt at peace. In the days before her death, I read to her, sang to her, and when caught up with emotion asked her if we might have a truce. I asked her many times expecting no answer -- "Can we please have a truce? No more fighting? A truce?" I was overcome with grief at times reading a favorite psalm of mine (I laugh to think that she, being an atheist, might have cursed me for this) or singing one of her favorite songs. Despite everything, she was my mother. My mother was dying. And though the end came swiftly, the Alzheimer's had been a long slow tortuous death no one should endure.

The nurses brought in her meals and encouraged me to eat them. The food was horrible as usual. I cried that she had to eat this for the past ten years. I truly felt miserable that she had eaten this food, though her nursing home otherwise was superior -- the best I could find. My mother despised pity, but I felt pity for her.

On September 13th, 2001 I posted about her death on my DP support forum. I was crying as I wrote, oddly enough over leaving my pets behind with my husband. A photo of my terrier was especially depressing. I don't know who or what I was actually crying about, but certainly the finality of so many things in my life. As I had in the past, I believe I projected my grief onto my dog. I still find it difficult to resolve all of my feelings for either parent, and deflect these feelings elsewhere.

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"This has been a particularly unsettling week for me. I can't watch T.V. anymore now as they have been broadcasting individual stories of just everyday people [who had died in the WTC disaster]. Everyday people like us who are gone or who have lost those they love.

What is particularly saddening is that my mother passed away at 2 a.m. on Wednesday, September 12th. That evening of the 11th I caught a bit of news of the horrors on the East Coast but it didn't really register. I hadn't even known details of it until late that afternoon.

I fell asleep with the dying in the nursing home, next to my mother's bed around 11:20 p.m. A nurse awakened me at 2 a.m. on the 12th to say that she had passed away. It was very difficult to look at her. But I had had the chance to say goodbye."

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I feared this day most of my life, yet I was able to take control on my own, to identify her cold body at the funeral home before her cremation, to plan her funeral -- a simple ceremony I feel she would have appreciated. Her ashes were spread in a lovely garden (inhumed) at a Methodist Church near a Michigan lake she loved so much.

I initially hoped she would have been proud of me, but finally realized that pleasing her and trying to win her love doesn't matter anymore; what she thought, what anyone might think didn't matter -- I did the best I could. I was not a "good girl," I was a responsible adult.

I think I have finally begun to work on acceptance, not necessarily forgiveness -- seeing my parents as human beings with human frailties. I think I feel more rage towards their illnesses than towards them. I am coming to terms with my own defects and failures -- real and imagined.

But this is a life-long process and we must remember we all were children once.

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Dark Hills at evening in the west,
Where sunset hovers like the sound
Of golden horns that sang to rest
Old bones of warriors underground,
Far now from all the bannered ways
Where flash the legions of the sun,
You fade -- as if the last of days
Were fading, and all the wars were done."
- Edwin Arlington Robinson -

Mom waves goodbye.
My mother in 1992. This is he last time she felt comfortable leaving her nursing home for the next nine years. Strangely enough I did not ask her to wave; she seemed to wave “good-bye” spontaneously.
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"Spend all your time waiting for that second chance
For the break that will make it OK.
There's always some reason to feel not good enough
And it's hard at the end of the day.
I need some distraction or a beautiful release,
Memories seep from my veins.
Let me be empty and weightless and maybe
I'll find some peace tonight.

In the arms of the Angel far away from here
From this dark, cold hotel room, and the endlessness that you feel
You are pulled from the wreckage of your silent reverie
You're in the arms of the Angel; may you find some comfort here.

So tired of the straight line, and everywhere you turn
There's vultures and thieves at your back.
The storm keeps on twisting, you keep on building the lies
That make up for all that you lack.

It don't make no difference, escape one last time
It's easier to believe
In this sweet madness, oh this glorious sadness
That brings me to my knees.

In the arms of the Angel far away from here
From this dark, cold hotel room, and the endlessness that you feel.
You are pulled from the wreckage of your silent reverie...

You're in the arms of the Angel; may you find some comfort here...
In the arms of the Angel; may you find some comfort here."

- Sarah McLachlan -

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