Wednesday, August 20, 2008

Y, H, W, H

There once was a God so sacred it was forbidden to say his name out loud. Yoo-Hoo! Woo-Hoo! Instead the people referred to him as "the name," or "ha shem," because it is a sin to take God's name in vain. Yes, He Was Here. Written in Hebrew, the letters signify the name Yahweh, and they are believed to symbolize life, to possess magical and healing powers. Yes, He Will Heal. Because the people weren't allowed to say his name, the correct pronunciation of God has been forgotten, and we are left with just the letters. Y, H, W, H.
The best way to become a god is to disappear. To be silent, unspeakable. In not saying something I fear I have created a false god and I’m here to dispel the power, to say the words and stop believing. Or start. I don’t even really know what the eff I’m doing with this but I feel the need to fill in the blanks. You Hid, Waiting Here.

People have asked me how or why I am so open on this blog. Anxiety attacks, getting laid off, the fact that I have a flat ass, my relationship with my mother. You’d think I’d need a speculum to be any more open. But there is one thing I haven’t written about, one giant pachyderm standing in the middle of this blog and I cannot ignore it anymore. I’m stalling. But the floorboards are creaking from the weight and everyone knows that elephants return to bury their dead.
I will start with the facts: My step-father has multiple sclerosis. His name is Allen. I have known Allen since I can remember. He was my father’s best friend. Growing up, I would go out in the Pt. Reyes estuary with them, netting for clams. Or lobster. Something, I don’t know. All I know is they would bring chocolate bars and when we pulled up the net we would guess how many whatevers were in the net and I always won. Now I know that they let me win. I would sit at the bow of the boat and feel such peace knowing that those two men with big 70’s beards were good. Life was good.
At some point my dad and Allen had a falling out. Then my parents got divorced and it was ugly. War of the Roses ugly. Allen sided with my mom and things get a little mushy here. Allen was diagnosed with MS but he was still strong. Still bearded, a contractor who made jewelry. An artist who could figure out how to fix anything but his rapidly scarring myelin sheath. My mom and Allen got married. They bought a house and renovated the downstairs just in time for Allen not to be able to walk. Yield! Halt! Wait! Here!


This is getting much too wordy. The thing is I could write this story a thousand and one times in six different languages and I still wouldn’t get close to the truth of what is happening.

Just the facts: Allen is now a quadriplegic. He lives at home with Fijian caregivers while my mother lives in the city in a tiny apartment close to her work so that she can pay for it all. Before he was in a wheelchair Allen used to tell us he would kill himself when he lost the ability to walk. Then he did and he said he would die when he lost use of his hands. Then he did and now his voice is a whisper, his lungs shallow with oxygen from lack of movement. When he speaks I can hardly hear him and yet he is not dead.



The tragedy of this is what is unspeakable. I cannot wrap my head around the why and so, in its own way, it has become my god. You Had Waning Hope. I don’t know how to deal with it and so I go numb. I tingle. Literally. I tell people I have panic attacks and anxiety but that is really just a quick explanation for what is really happening. What is really happening is this: I get MS myself. I drag my foot. I cannot walk. Doctors and neurologists have examined me and there is nothing there but fear. I am a hypochondriac with a specialty, a head case, my own myelin sheath shiny and new, the wires in my brain a twisted tangle of what-the-fuck. If only I could use this power for good I would be able to bend spoons, to lift cars. I would be able to cure the ill. But I can’t so I take a tiny peach pill that makes me remember: I am healthy. He is not. So many many people are not.

Lately Allen has been in and out of the hospital. A bowel obstruction. Bladder infections. Pneumonia. Sepsis of his blood. Small maladies that pull at his dignity, this man with a beard who gave me chocolate for guessing how many whatevers were in the net even when my guess wasn’t right.


MS has torn my family apart, rendered us all paralyzed in a way waiting for what comes next. Allen will die someday not because he lost use of his legs or because he cannot move his hands. He will not die of his own accord. He will die because a cut on his foot won’t heal or because his bowel muscles won’t constrict to poop. He will die because of some insipid fuck-ass neurological disease, a disease that I don’t have but somehow sometimes convince myself I do because I don’t know how else to help.

And when Allen does die I can only hope that I remember him for who he is and not for his disease, this big terrible tragic god that invaded his nerves and our lives. Allen is a kind man who loves fixing clocks. A man who loves peanut butter and animals, plays on words, an artist who made the most beautiful jewelry years ago when his fingers moved like butterflies.


I was so afraid to write about this. It’s too real. Writing about it makes it all too real. But if I don’t write about it it becomes bigger and my toes, they tingle.

Today is Wednesday. There is nothing special about today. Allen is not in the hospital right now. And so I begin to write this knowing full well I will never get to the truth. It is what it is. Just the facts. Allen has MS and I do not. We are all dying and thus we spin gods from yarn and twigs. Why? What is the meaning anyway? There once was a god so sacred it was forbidden to say his name out loud. Yoo Hoo! Woo Hoo! Because the people weren’t allowed to say his name the correct pronunciation has been forgotten and we are left with just the letters. Y, H, W, H. But some of us are tired of waiting, and so we have to make up the name ourselves, in a language bereft of signs and symbols. In a language only we can teach ourselves. Y, H, W, H. You Have Wounded Him.

45 comments:

Ana said...

Susannah,

What a beautiful post......

love,
a.

Jill said...

Amazing post. What raw emotions.

My cousin has MS. Diagnosed at least 25 years ago. I remember the last time he walked ... it was at his daughter's wedding in 1989. He not-so-steadily walked her down the aisle with the use of a walker. He tripped on the train of her dress. We laughed - and then we cried.

MS has affected my whole family. Every time I come back to the States, I'm cornered by my cousins and asked to visit their dad and give my feedback as to his decline... Do I notice any change in him? Is he slower than he was last year?

MS really sucks. I wish your stepfather well.

Rosalie said...

Thanks for writing about this. I wondered when you would. It makes me feel better for going there in my own blog, something that I have a hard time doing lately. It also shows that blogging isn't always about the latest in pop culture and a pair of cute shoes (though I sure enjoys those posts too).
Love,
Rosalie

bakingwithplath said...

This post was beautiful and sad all at the same time. I think it is one of your best posts. I am so sorry to hear about your stepfather. I don't know what else to say, but my heart ached when I read this.

zakary said...

I'm so sorry for your family. Thanks for keeping it real.

XO~Z

JackeeG4glamorous said...

I'm sorry for your heartache Susannah, but life itself is "achey", at best, and it takes a brave one to write about it so openly, so succinctly. Thank you for sharing.

Anonymous said...

Dear Susannah-
Your post touched my heart. My brother-in-law is in the last stages of ALS, and I too, feel utterly hopeless. I wish you and your family peace...prayers are with you.

Shannon said...

Susannah,

A truly touching entry. Whoever the unamed may be, I hope that he or she or they will help your stepfather and your family through the pain.

Jessie said...

Praying for him...

and you.

Holly said...

Thank you for such a beautiful post. You are all in my thoughts.

Richie Designs said...

thank you for this.

sometimes just the fact that it's a wednesday is enough.

thismslife said...

Thanks for sharing and I will say prayers for y'all... But for your temporary relief of heartache I prescribe 100 Zoey kisses and hugs.

leah said...

This post is so beautiful and heartbreaking. The body is amazing both in how often it works and how spectacularly it can all go wrong. I am a nurse and my heart aches every time I see it go wrong and my hands yearn to fix it even when I can't. My thoughts are with you and your family.

hej said...

Amen.

L said...

S-My heart reaches out from my chest for what your wrote--out from my chest to you and to all the others out there who are dealing/have dealt/or will deal with chronic illnesses.

You have inspired me to write about my mother's (and, subsequently, our family's) battle with schizophrenia. I hope you will visit my blog tomorrow and read my words and find comfort in knowing that you are not alone in your thoughts and feelings. If I weren't in Pittsburgh--if I were where you are--I would hug you. And I hardly know you. But that's such a tiny detail. We are all friends here.

I am thinking of you and commending you for your bravery in letting the truth of your heart come through your fingers.

with love from Pittsburgh...

Courtney said...

Susannah, WOW. This post was so incredibly touching and real and powerful and raw...and a flood of emotions. I wish your stepfather and your family the best in dealing with these feelings and this awful, awful disease. He's in my prayers.

Trenches of Mommyhood said...

No words. Just a virtual hug.

Anonymous said...

Very well done Susannah. I admire your honesty in all your posts (makes me nod in agreement many times and feel 'normal').
I am sorry for the pain you are all going through, I know it's difficult. I have a daughter who has suffered leukemia and so can identify with you.
Take care xx

Kathi D said...

So eloquent, so wrenching.

I can tell you that you will eventually remember Allan as he was instead of how he is. It takes a while. And of course it's not even the beginning of that yet. But it will happen.

Petunia Face said...

Thank you all for your kind comments. Really.

Now you wanna' hear something so entirely fucked up and strange? I had just finished that post and was feeling kind of tingly and scared having written it when this girl at work asks me to go to lunch with her and another girl. Now I don't know people well at my work yet and was just so happy to have been asked out! Dork yeah? Well the girl--we'll call her D. On the elevator down to her car D mentions how she hasn't worked out in so long, blah blah, but she had just gotten a personal trainer who specializes in her illness. The other girl asks "what illness?" and we get in D's car, the door closes with a snap (I don't even need to dramatize here, this is how it happened) and she tells us she has MS. Has had it for 5 years. And I could not feel my legs. Like really--I was gone. Heart pounding, hands tingling, trying to breathe. The other girl asks her all sorts of questions about how did she know she had it? What were her symptoms and I am trapped in the backseat of a VW Golf listening to my worst fears, a litany of symptoms I can make my body have at any given time. WTF Universe? Was that your idea of a joke? Fucker. Universe, sometimes you are a real fucker.

Megan said...

Just beautiful, Susannah. You are a wonderful writer, and an even more beautiful soul.

Kamryn said...

Here's my YHWH for your family.
Yes, hearts will heal.
I don't know you guys, but I do know this: Not everyone who has a debilitating illness is as lucky to have supportive people in their life. Allan is blessed.

Jules said...

Jesus, Susannah. I'm sorry about the car ride. You know I KNOW what you were feeling. :(

Are you doing ok right now? It always takes me a day or two to climb down from the ledge.

Jenn said...

MS sucks. My aunt has it and it is so difficult watching her decline and how the family reacts to it. the shining spot though is that she has never been as fun as she is now, even though she can't pee or eat by herself. I treasure the moments with her when we get to just laugh and be together. I'm sure your stepfather feels the same about you.

Judy said...

My Sweet Susannah, a child so sensitive and empathetic that she has, quite literally, taken on many of Allen's symptoms and given voice to the unspeakable fear of slowly and relentlessly losing control over his body and his life. I am so glad that you could write this brave and touching post today-both in a lovely recognition of Allen and his struggles with a frightening, cruel and unpredictable disease but also to describe Allen, the man, who isn't his disease. I know how hard it was to put yourself and your seemingly irrational fears out there for all to see...and I promise you that this puts you a quantum step closer to putting your fears into perspective.I believe that seeing the virulently progressive decline of a man you knew as so strong and able-both physically and mentally tapped into some of your worst fears-fears made very real as Allen was not only an old friend but then became your Stepfather. Also, seeing how Allen's disease has affected him, my life, our family's life turned it into your own bete noir.

But I do believe that what does not destroy us makes us stronger...and here we are struggling but coping. And because this is real and life is what it is and we ARE all coping and learning,even painfully learning the unexpected limits of our resources; surely that make us what we are-maybe forged a bit stronger than we ever expected of ourselves. If any of us doubt, look to Allen. Even though there was a time when he believed that the acceptable limits of the quality of his life were defined by the degree of assistance he could endure in the carrying out of the most basic of body functions,he evolved way past that. Now, for him, he accepts the considerable help he needs and finds purpose, even joy, in many other things. His definition of quality of life has changed and he finds reasons to live beyond his ego. None of us would have chosen this, not Allen, not me, none of us-and yet, here it is and we are dealing with it. Our lives are changed and they certainly aren't what any of us expected but here we are....and today we are all just fine! You, having written this touching post today, may have moved into MORE than fine. Good for you. I am so proud of you both for your bravery and for your ever tender heart and soul. You Have Within Heart...Y W W H! And, more than ever before, I believe God is in all of us.
Mom

Erin said...

Susannah, this is possibly your best writing yet. I am so proud of you for writing such a brave and beautiful tribute to Allen, for all the (blog) world to read.

Love,
E

Robin said...

Such a beautiful and gut-wrenching post, and so brave of you to write it. Your family will be in my prayers tonight.

I *Heart* You said...

you truly move me with your writing. i can't say that i know what it is like dealilng with your situation but i do know what it is like to feel small and powerless in the face of a disease that will mercilessly take your loved one from you. i feel this way towards cancer, specifically pancreatic cancer.

i can't find the words to tell you how hard this post hits me and how i feel like mentally sighing in the virtual presence of someone who can put into words so many of my difficult to explain emotions.

love to you and judy.

caroline said...

so raw and so beautiful and so sad.

jae said...

The first time I have commented on your blog. I hope you find some healing power in just opening up. My mother-in-law died from MS. When I met my husband, she walked with a cane. Within six years, she was bedridden. She died of a stroke 5 days after our daughter was born. (We firmly believe she was waiting to see her) It is a horrible, horrible disease. I will put your family in my prayers.

mamas said...

Wow. There isn't really anything else to say, is there?

Anonymous said...

Open...honest...naked...beautiful. This post was very moving. Thanks for sharing.

Judy said...

To you, Susannah, and to all your incredible,caring, supportive blogging-world friends, I want you all to know that I read both this beautiful post and each and every dear comment to Allen last night. He was deeply touched and all the more so because he knows and understands that the MS he has and the intensity and rate of his decline has touched off some very deep-seated fears in you. He also knows and completely understands that your anxiety about his disease has nothing to do with your feelings about him or your love for him. Lest you feel uncomfortable about my reading it to him because of the way you addressed his dying and eventual death in the post, please know that one of the things that Allen has found very difficult these last few years is that so many people, including most of his doctors, are NOT comfortable with the subject and he needs to talk about it.

The most important thing he would want me to relay to you and others is this....while his life is hard, some days harder than others and while the most seemingly simple and commonplace tasks become almost insurmountable hurdles some days, he feels that his life has meaning, that there are still things he is meant to do and, most importantly, he has come to both recognize and feel immense joy in the many beautiful things in life. Taking Tucker leashed to the power wheelchair down to the park in town and visiting with the many friends he has made, watching the goings on of the town, having his coffee and biscotti brought out to him (half the biscotti for him and half for Tucker-unless Allen drops his half, a common occurance which Tucker takes full advantage of-just another "service" he performs as the world's most dubious "Service Dog"), these and many other things make his life worthwhile. Just last week, he described wheeling home from downtown and hearing the most beautiful young male voice singing inside a house. He sat there and listened until it stopped and he was transported by the sheer, unexpected beauty of it.

I am almost certain that I could never handle what he does with his attitude and grace. I know for sure that I sometimes barely keep a grip on my own role in life with Allen. I made a vow to Allen and myself a long time ago and that was that, as long as I have breath, I will make sure that he is able to stay in the home we made for ourselves, that Allen put so much of himself into-including the massive renovation to make a barrier-free, ADA adapted, beautiful living space inside and out-and that he would always have the care he needs to stay at home. None of it is easy-sometimes it feels too hard for all of us but as long as there is a beautiful song to hear, then it's all good. We could all learn from Allen to seize the moments and recognize the good in every day. He loved your post! Mom (on Allen's behalf)

Judy said...

To you, Susannah, and to all your incredible,caring, supportive blogging-world friends, I want you all to know that I read both this beautiful post and each and every dear comment to Allen last night. He was deeply touched and all the more so because he knows and understands that the MS he has and the intensity and rate of his decline has touched off some very deep-seated fears in you. He also knows and completely understands that your anxiety about his disease has nothing to do with your feelings about him or your love for him. Lest you feel uncomfortable about my reading it to him because of the way you addressed his dying and eventual death in the post, please know that one of the things that Allen has found very difficult these last few years is that so many people, including most of his doctors, are NOT comfortable with the subject and he needs to talk about it.

The most important thing he would want me to relay to you and others is this....while his life is hard, some days harder than others and while the most seemingly simple and commonplace tasks become almost insurmountable hurdles some days, he feels that his life has meaning, that there are still things he is meant to do and, most importantly, he has come to both recognize and feel immense joy in the many beautiful things in life. Taking Tucker leashed to the power wheelchair down to the park in town and visiting with the many friends he has made, watching the goings on of the town, having his coffee and biscotti brought out to him (half the biscotti for him and half for Tucker-unless Allen drops his half, a common occurance which Tucker takes full advantage of-just another "service" he performs as the world's most dubious "Service Dog"), these and many other things make his life worthwhile. Just last week, he described wheeling home from downtown and hearing the most beautiful young male voice singing inside a house. He sat there and listened until it stopped and he was transported by the sheer, unexpected beauty of it.

I am almost certain that I could never handle what he does with his attitude and grace. I know for sure that I sometimes barely keep a grip on my own role in life with Allen. I made a vow to Allen and myself a long time ago and that was that, as long as I have breath, I will make sure that he is able to stay in the home we made for ourselves, that Allen put so much of himself into-including the massive renovation to make a barrier-free, ADA adapted, beautiful living space inside and out-and that he would always have the care he needs to stay at home. None of it is easy-sometimes it feels too hard for all of us but as long as there is a beautiful song to hear, then it's all good. We could all learn from Allen to seize the moments and recognize the good in every day. He loved your post! Mom (on Allen's behalf)

I am Trish Marie said...

That was amazingly beautiful. I know this was not so much about putting together a perfectly written piece, but that you did.

I think, perhaps, the waiting, the unknown is almost as unbearable as the present events. Not knowing how bad it will get. How you will cope. How you will be able to breathe. At least, that is how I feel. My daughter has a genetic condition. Very rare, and with varying end results. More often than not, most children die by 12 months old. My daughter is four, and hardly affected (well, if loosing her hearing, having kidney surgeries, and soft palate surgeries, and testing, and labwork is not hardly affected...I guess I mean compared to the others). But no matter how "healthy" she is now, I live in a state of constant panic. Constant waiting for a down-turn. It wears you out.

Robin said...

That was such a moving post. You are amazing and so is your family.

L said...

Susannah,

I've done it. I've shared my story. I am sorry for the delay. I have thought about you each day since I've read this post. Each. Day. I just hurt too much to write.

But your nudge helped. Bless you.

with love from Pittsburgh...

karey m. said...

oof. this was a punch in the stomach.

even the damn comments are bringing the tears...

i hope you don't mind, but i had to kirtsy this. xoxo.

Maggie, Dammit said...

Speaking of having no words....

You did good, girl.

My aunt as MS. We had hats printed that say "MS SUCKS" but when women wear them it doesn't look quite right. The sentiment holds, though.

This was a fine, fine piece of writing.

Thinking of you.

Mary Beth said...

I came over from Kirtsy - this is a beautiful post and made even more so by your mother's comments. You and your family are on such a difficult road but you are handling it with such strength and grace. Good luck to you all.

Pumpkin Petunia said...

"...as long as there is a beautiful song to hear, then it's all good."

Reading this line felt like a strike of lightning to me. There's a reason that I was supposed to read this. I don't know what it is yet, but I feel there's a reason.

Your post is beautiful and the words of Allen and your mother are an inspiration. Truly life changing.

Ross said...

Susannah, you are a beautiful, loving, sensitive, brave, empathic soul. I believe I can say that because I have read your heart. A heart written with a clarity and vulnerability that draws us in. Your imagery is stunning.

I, like you, am the type of person who wishes that they could fix things. I can't do that, either, but maybe I can offer you something. I agree with your beautiful, loving, sensitive, caring mother that God is in all of us. God is in Allen as he suffers. God is also in Allen as he hears and enjoys the beautiful music emanating from homes. God is in your family as you all cope with Allen's illness and your role in it. God is also in you all as you offer love, support, care and aid to Allen. God is in all of us who read your story and weep along with you and yours. God is also in us all as we send virtual hugs, prayers and words of love. God is in the inspiration that you give to others in writing your story to confront their demons turned into gods by the silence that they keep.

YHWH? Yes. You Have Written Healing.

You don't know me personally, but you have probably heard me referred to as the Ross-a-tron. I am L's (with love from pittsburgh's) boyfriend. So, I know this to be true. Thank You.

Pare said...

Susannah? One of your BEST so far, hands-down.

Jody said...

HI Susannah,

I have never written on a blog before so I hope this gets to you. I was directed to your blog today after speaking to your mother on the phone. I was tying to find some nursing help for my friend. It turns out that your mom used to live where my husbands family live now. Any who...I had one comment to make after reading your entry about MS. By the way I have had panic attacks for 26 years so I know what a monster they are. Have you ever considered the reason you take on the symptoms without having MS is because you are empathic? And maybe consulting with another empathic, you could learn shielding techniques? just a thought. I am empathic and similar things happen to me. You are a wonderful writer by the way!
Warmly, Rita Loyd

Your Ill-fitting Overcoat said...

Oof. This is beautiful and has me teary at my desk. Thank you for sharing something so aching and lovely. I think each of us can relate in our own little ways.