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A few weeks ago I went to a support meeting with my parents for patients and family members with ALS...and I discovered that I am so not ready for that!
My parents have gone to several of these meetings and seem to enjoy them. They have invited me before, but my work has always interfered thus far, and for some reason I just didn't feel that I had an interest...so I have managed just fine without, and felt no need to change that.
It had originally been my intention to just go to see them that day at their home, and help with some of the chores there and head back home that evening...but I had been preoccupied and hadn't been in touch for a few weeks...they had gotten worried about me, and left me a message to call them; they thought something may have happened to me, or that I may be in some kind of trouble! Sheesh...so when I called back my Mom told me that they were going to this meeting, and invited me along...I was feeling guilty for being out of touch and worrying them, so I agreed but with a certain measure of trepidation.
I arrived a little late as I had a doctor's appointment that morning and had several things I had to wrap up first. I was heading up to my parents home with them afterwords so I had to pack a few things as well; I would be staying the night.
When I get there I find a dozen or so people in this room...a chair is saved for me on my Mom's right. On her left is my Dad, then Kim, the person who will take care of things if and when my Mom is ever under hospice care. After Kim there is another woman, she has a very similar case to my Mom's, and has progressed to about the same place. He daughter comes after her, then a counselor, a married couple (the wife has ALS), two single women who's spouses have ALS, and then a man who has it next to me.
They are talking about writing letters, passing legislation, getting research funding etc...they have already covered some of the advances that have been made towards finding out more about ALS, and potential cures.
I set down my purse and laptop (don't go too far without it, and it's to hot to leave in the car) everyone says "hi" Mom and Dad give me love, and I settle in...I don't find this stuff stimulating, or interesting much, but I am here for the parents, for Mom, so I just let my mind wander a bit and sit tight.
After about 30 minutes of this kind of drabble, Kim announces that we will use the last hour to introduce ourselves, and how we are connected to ALS, and share a few things with the group...this was my UH-OH moment! I suddenly feel that the room is very small and tight...I have no desire to share my inner thoughts and feelings with these people that I don't know...or to tell them about my "connection" with ALS! All I can think is that they have no idea of how this is such a mind fuck for me, about how I've fallen apart piece by piece over this last year and am still desperately searching to find myself in this...they don't know me, they don't know my pain; they can only know theirs, and theirs is so different.
I have learned not to share what goes on inside me...
Hubby has taught me that my pain makes no sense and has no value...and the pain of that on top of my other pain has made for a deep vortex that is not easy to navigate...
They start with my Mom; she tells about how she was misdiagnosed, and how her true diagnosis was very freeing for her, how once she knew what she was dealing with that she finally had true peace about it all. Not knowing was the hardest part. She talks about how she is fine with her prognosis...all I can think is that I'm still so not! The daughter of the woman that is so similar to my Mom is crying and nodding her head while my Mom speaks...she understands what she is saying...I feel badly because I think it's like a foreign language to me, it's all gibberish...I have no peace here...fuck, shit...I am beginning to realize that they will eventually get to me; what will I say???
My Dad talks, he talks about how my Mom is so strong...I have a huge lump rising in my throat...I so don't want to cry in front of these people, I don't want them to nod at me, or hug me, or touch me, I don't want to get to know or like these other people that will just die too...I feel a panic rising inside, and I am struggling to keep it down...
They move to the woman like my Mom; and like my Mom she has a Dynavox, it's a machine that she can type into that says what she can't...while my Mom can still talk, it's difficult, and so she is using hers more and more. This woman tells of her misdiagnosis, (this is very common) and her peace as well. Her daughter talks next, I am afraid that she will cry, and then I will cry...but she does well...and she says something that I can truly relate to; she says that strangely enough her Mom is her rock...mine is for me too so often, when I feel I'm drowning in a sea of sadness, and can only taste the salt of my tears, when I can't see the surface or the sun anymore, when I can't breathe, my Mom is there to hug me, to love me, to lie to me that she's ok, and I'm ok...but I know that I'm still drowning...
They move to the couple next. The wife with ALS starts, but quickly stops...she is overwhelmed with tears and grief...she was just diagnosed in January, is already in a wheelchair, and uses a microphone that makes her voice audible...she seems to be progressing fast. Her husband takes over without missing a beat, he is holding her hand, stroking it, speaking for her...my lump in my throat is cutting off my breathing...there are the start of tears in my eyes as I watch them...but I am so not going to cry...I will choke and suffocate on this lump before I do that...
On to the next one...I am looking at the clock...it's getting closer to me, and I want to die inside...I am stuffing down my panic with each word that they speak....I have no idea what I will say...what can I say? That I hate this and what it's done to me and my life, that everything is so wrong about this, that I have wandered so far from the path that seemed right in my life from the moment I knew that my Mom would die...that I am an emotional trainwreck, that there is no peace in me, that I can't do death...? Is that what you say? That I can't wake up one day and not have her there, that I don't know how I will take another step some days, that I want my Mommy....OH GOD HELP ME!!!!!!!
I have no idea what this woman said to this day...on to the last one before me...this man is a "long-termer" he was diagnosed 8 years ago (a year and a half is the average) and he talks about the things he does to make life easier and get by, about why he thinks he has been here so long...I look at the clock again; we are going over on time, but still he talks...I want to bolt from the room, I want to leave...I look at my Dad and Mom, they are holding hands...I can't leave them, I am paralized...
But then a miracle happens...when he is done Kim calls an end to the meeting...it's like I don't exist...they are over on time, and many are getting tired and have a drive ahead of them...so I bolt...I run to the rest room, and leave...I don't want to talk with anyone, I only want out of there...Mom and Dad stay and talk a bit...Mom hugs the girl who's Mom is so like her, she tells her that she thinks we have a lot in common and could help each other; I think not. This girl writes letters, fund-raises, and does constructive stuff to get through this. I am at times self-destructive...
I leave so quickly that I forget I have my laptop...I leave it in the room...I run for my car...Kim runs it out to me...sheesh...I have escaped my the skin of my teeth...I am breathing deeply trying to get a grip for the trip to my parents house...I don't want to drive and cry on the mountain road there.
I manage to compose myself and make the trip safely...on the way there I throw in a CD that my boyfriend has made for me, and try to think of other things, of anything but what's so painful and true...I will lose my Mom...another piece of me will die, and I will have to dig through the dredges of what's inside me to survive...I hope there's enough left inside to hang on to when that time comes...
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Posted by 2ndchildhood on 2008-06-30 10:28:10 | Rating: | Views: 37
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