Thursday, February 04, 2010

It's depressing as fuck because it's true.

There are a lot of ways to suffer on this planet. Haiti, cancer, health care, ALS. As long as there are humans in the world, there will be suffering. However, if you’re inclined to support a cause and you haven’t picked one yet, this blog is intended to help you understand what it’s like to be trapped in a body that has ALS.

It begins innocently enough. First, a strange tremor, then, an unaccountably violent fall. A shoulder that won’t heal, then a hand. The kind of panic that you feel in those early months is as palpable as the panic you will later feel when you have lost control of everything. You are told you have ALS. The average person lives 2-5 years with the disease. But that’s the easy part.

When you have ALS, you begin your post-graduate study in the discipline of losing things. You lose muscle in your hands and ankles so you drop things and trip a lot. It’s almost comical. Pretty soon, you lose the ability to button a button, or to cut something with a pair of scissors and then, to pick up a fork, spoon or pen. Your typing devolves until you peck the words one letter at a time. Then you get someone to type for you. This goes well, until eventually, no one can understand you so they don’t know what to type. You lose muscles in your hands and ankles. You have to wear braces and sensible shoes. It doesn’t seem like that big of a deal, but now, you fall all the time. You break bones. They don’t heal. You begin with a cane and then your friend paints a walker leopard-skin, but before you can make friends with the walker, you fall backwards twice onto the back of your head. Now you’re in a wheelchair full-time.

It’s okay though. Your friend reminds you that now that you can’t lift your hands over your head to put on your sports bra, you can go back to the lacey sexy ones that hook in the back that you love. You threw all your sexy bras out when you couldn’t hook them yourself and so you get to buy a bunch of new ones. Mostly red. When you lament being stuck in a wheelchair, you friend reminds you that you can un-retire your sexy Fuck Me pumps. You give away the sensible shoes. You teach people how to do your hair and make-up. You buy orthotic devices so you can feed yourself. You live a normal life, but you happen to be in a wheelchair.

You lose sleep. At first, your problems are self-inflicted. You lie awake, wondering about death, loss and when and how it will all happen. Later, you lose sleep because your blanket falls off you and you aren’t strong enough to lift it back up or you swallow too much air with your breathing machine and get nauseous and burpy. Or maybe you accidentally roll on your back and you can’t roll back to your side. It’s too hard to breathe when you’re lying on your back.

You’re tired a lot. This seems like the cruelest loss of all. Each nap represents hours that can’t be returned. Hours that you’re running out of. There’s too much to say and too much to do, yet you feel like someone has placed a pile of bricks on your chest. You try to read a story aloud to your little niece and nephew and have to give up halfway through the picture book. You go out for lunch and you feel like you spent the day at Six Flags in the blazing sun. You can summon up enough air to be loud enough to be heard or you can articulate clearly, but you can’t do both at the same time.

You get tired eating. Chewing is an effort and swallowing has to be done with full and complete attention on the task. Choking might kill you. You eat fattening and irresistible food because you have decided you will not get a feeding tube, so you want to keep up your caloric intake at all costs. Sometimes, you choke on saliva. You breathe so much of it down your esophagus that you gag and throw up the saliva. Then, you find a great medication do deal with the saliva, but it dries you out so much that you have cracks in the corners of your mouth that make it painful to smile or to open wide. If you’re too dry, it’s hard to talk. If you have too much saliva, it’s hard to talk. If you’re tired, it’s hard to talk. It gets to a point where all you want to do is get lost in stories or music or poetry.

You start getting pressure sores. You cramp up painfully. Your legs tremor out of control. It’s the leg tremors that wake you up early in the morning. Your legs shake so much it’s hard for people to get you out of bed in the morning and onto the toilet because they have no stable pivot point. Your feet think they belong to Donald O’Connor and your legs are identical to Ray Bolger’s in The Wizard of Oz.

You are 100% dependent on other people. You begin needing a helper first thing in the morning for dressing and showers and last thing in the evening for the reverse. Then you need someone to cook for you, to do your make-up, and pretty soon you can’t cook or serve food. When you can no longer use the toilet by yourself or bring your hand to your mouth to eat or lift a glass of water to drink you need full-time care. This is not only challenging to your privacy, but it’s impossible to afford on a long-term basis. With caregiver bills and other related expenses in the 12,000-15,000 a month area you face the sad fact that there is an up-side to the fact that you are dying, which is that you can’t really afford to live much longer anyway. You are never alone except when you are in bed and a feeling of dread comes over you when you wonder what will happen if you get trapped under the covers and can’t reach the bell for help. Even if someone was interested in a romantic relationship with you, you would never be alone to have one anyway.

Your life is 180 degrees away from where you thought it would be at this point. Everything that you thought you couldn’t live without, you have had to let go of. Everything you will lose in the future will take you further and further away from the larger world. You feel like you are on a snowdrift riding a brisk current away from the mainland.

You make fledgling efforts to communicate. You try to stay sassy on Facebook. You laugh a lot. You say “Goodbye” to people from out of town and you don’t know if you are saying “Goodbye” or “Goodbye.” You do this with your son and it is almost but not quite unbearable.

You are being dismantled piece by piece like a newspaper chain. You watch in slow motion as everything is lost. You play and you replay the videos and recordings of the old you and you recognize her in a very full way that you don’t recognize in recent videos, which makes you think, “Who is that woman with such jerky, awkward gestures? And what is she saying? I can’t understand the way she slurs her words. Oh, my bad - it’s me.”

You know how life can knock the wind out of you so suddenly and you envy the innocence of the rest of the people around you who don’t realize that just like you they could die at any moment. You want people to know how hard it is, but you don’t want them to feel sorry for you or to think you’re brave or to give you the Olympic Gold Medal for Suffering. You want people to see how easy it would be for them to wake up one morning and decide to give up their self-inflicted pain and enjoy their wonderful life. How easy it is to have a great day when you can make and eat you own toast, throw on your own clothes, go out into the world and do whatever you damn well feel like.

You want people to live all the life you’re going to miss.


Laura D said...

This is one of the reasons I think of you every day. I got the smallest tiniest taste, a tiny waterdrop of disability when I broke my hip. Every day I cherish moving. This morning I got pissy when I got to my car about something stupid and I stopped and closed my eyes and thought - "At least I could walk from the house to my car, and not only that, I had my coffee cup in my hand." Whenever I start getting angsty or complain-y or poopy or anything - I think of you, Carla. And I stop. I found out today some wolves I loved died recently and I talked to a wise horsewoman about death and horses as I keep processing Pickles' death so I can ride again and have that heartfelt joy that comes from it. This life is so short and precious. I get it and I keep reminding myself to do what I love and appreciate all this because we are flowers that bloom and die, and I try to dump the stuff that doesn't matter that I can get all wound up in. And yes, I do forget but then I think of you, Carla. I hate that you have this disease so much. I hate it so much. But you have given me a gift, a light, and fuck ALS I fucking hate it so much.

Anonymous said...

Of course, every time I read a message like this, I think, "she's killing me softly with her song".

You know what I am most guilty of; ingratitude.

Since this horrible fucking disease has hit you, I day never goes by that I don't think about you and how what I'm doing at that moment(a thing I might have been tempted to lament in days gone by) like driving a car in traffic in the rain, or being kicked in bed by a squirmy 4 year old and being able to carry my pillow to the sofa and go back to sleep,or getting my period and changing my pad) is actually a grand blessing. I can do it myself.

I can do anything I want, and you can't, and it's not fair. If anyone should suffer it should surely be the miserable complainer (me) and not the joyful trouper (you).

If it brings you any comfort, please, know that your suffering has enlightened me. I have not been worthy of the gift of enduring, surviving, living, but I was given it anyway.

Let me be worthy. That's my mantra now.

Anonymous said...

Hi Carla,

Wish that our love could lift you up off the ice floe and rejoin your spirit with a healthy, vibrant body...
I saw someone who looked like you run past the gym window today and I burst out crying when I realized it wasn't you. I wish, I wish, I wish....
you are so loved...

Anonymous said...

here and now
here and now
here and now

thank you for all that you have given me along these lines. i am surely sure that i can surely say that you have surely imparted me with more wisdom and reality than i have ever had before.

Anonymous said...

How do we keep forgetting? I find your voice generously prophetic, encouraging us to live and love life in every miraculous moment given to us. This last entry is a book unto itself, its message speaking volumes. Your blog is your gift that keeps giving. And I thank you.

Greta Koenigin said...

I am quite officially very, very sad. I'm going to miss you when you have to leave us.

When you were my teacher, you taught me to see the good in things and how to cope with adversity. It only makes sense that you are providing a thorough, frightening, and inspiring guide for dying. And living.


Anonymous said...

I'd like to share a Channeling-Carla moment. Last week one of my son's basketball teammates got chewed out in the locker room for having a cell phone in his sock (not while playing, just in the locker room, and it was off). Suffice it to say, the tirade was humiliating, and quite disturbing to his teammates. In my typical fashion, I was spitting fire and ready to tear this coach a new one. But I honest-to-God thought, "What Would Carla Do?" Clearly I didn't get it exactly right, because I baked cookies. But still. At the end of practice the next day I brought cookies for everyone and told the chewed-out boy he got his own bag, and asked him if he knew why. He said no. I said, "Because I really like your idea for how to carry a cell phone" and then I showed him I had mine in my sock. He raised his arms, hooted, and gave me a big hug. Then one of his teammates told Eric, "Your mom's hella raw" (which I found out is a good thing) and Eric replied, "Yes, she is." It was a true highlight of my mothering career, and it would not have happened if not for you, Carla. I will continue to try to take the path of humor/gratitude/love that you have so clearly and generously mapped out for all of us, as best as I can. I am grateful beyond words.


Anonymous said...

YES YES to people who "decide to give up their self-inflicted pain and enjoy their wonderful life"

Beautifully put. So true.

Attitudes hard earned by you and me through ALS and cancer.

Love you,

Anonymous said...

I always love reading the comments on this blog. And I especially loved reading Kathy's story this morning. Talk about inspired motherly jujitsu!

If I were to describe what comes to me when I think of a Carla-channeling moment, yes it's the path of humor/gratitude/love. Might I add creative mischief to the mix?

Brilliantly executed Kathy.



Jack said...

I agree with Stephanie about loving to read the comments to your blog. The love and wisdom you pass on is so evident in how your devoted followers respond.
Kathy's creative response to an awkward situation is a lesson for all. I love the thought process she used. AND I now know "hella raw" is a good thing.

Anonymous said...

Hi Sweet Girl,

Well, you have done it again. The wake up call that we all need to appreciate, love, enjoy what life we have left for however long we have it. It is raining today and I was feeling grumpy and bored now I will rejoice in the rain, get over my silly mood and get on with enjoying my day. All because of a beautiful red head who teaches life lessons to those who need it.

Love, Pat

Anonymous said...

this day i am here to say
that the good i do
is in reflection
of the wisdom i have gained
from knowing you

i have met you in person a total of ONE time
i have read all your blogs herein
i have changed my life
to incorporate
your wisdom, humor, curse words (yes, FUCK is my favorite word)
and whole and holy outlook on life.

thank you from the bottom of my heart, the top of my head, and the soul of my self...

Anonymous said...

Tears falling down my cheeks and just the message I needed to hear tonight. Your words, as always, touch my heart. I promise to get over myself, wake up tomorrow and live my wonderful life while I still can because, who knows what's around the corner. Thank you for keeping on writing even though its gotten harder and harder. I know there are so many of us out here who appreciate it and light up whenever we see a new blog posting. I know I do. I want to share a song from my choir "You Are Loved." Much better if you could hear it and I'd like to come sing it for you, but in the meantime here are some of the words. Sending you my Love, KK

You are loved
Deeply loved
You are a well cherished garden

You are loved
Deeply loved
You are a treasured child

All your life
All your days
From the very first moment of being
You've been loved
Greatly loved
You are loved

Drink it in
Drink it in
Love is the life giving water

Take it in
Take it in
Know it in every cell

You've been loved
Greatly loved
You are loved

Drink it in
Drink it in
This is what nourishes spirit

Take it in
Take it in
This is what opens the heart

Soak it in to our toes
So the roses we are fully blossom
We've been loved
Greatly loved
We are LOVE

me said...

I do.

I will.

I promise.

tracy said...

how you are doing your life and sharing it's most difficult,desparate, and insightful moments is nothing short of a miracle we are all witnessing and it is changing me.
thank you again and again and again

Unknown said...

An inspirational message-I'll try to remember and be grateful for the things Itake for granted. I though my past year was tough-I'm heading for a divorce, but you put things in a clearer perspective. Thank you and best wishes,

Anonymous said...

Sometimes you just leave me speechless...


Anonymous said...

I wish that each of us could spend a day or a week living in your body with ALS & let you live in our bodies. I hate that you have to suffer so much, and like so many others, wish that I could make it go away or ease it. Thank you for sharing the shit of ALS.

Much love,

Gail Hildebrandt said...

There are so many ugly, horrible things that can afflict human kind that if you put them to a list, it would go on and on. I think that people very often keep their heads in the sand, so not to have these things constantly on their minds, to keep their sanity, because sooner or later it hits you square in the face and you now have to deal with it - there is no way out. It is right that we should be using every moment of every day in a way that as you put it - treat it like it could be our last. We can honour each day and glorify all of it's blessings but the only problem to this, is that many of us are very close to someone suffering or who has suffered greatly and to let go of that is a hard thing to do. So we just try our best and go to bed each night giving thanks for the day and all the blessings it has given, and if we cry for someone close to us, that's ok, we are only human. Bless your heart Carla.

Anonymous said...

I know. It is so not fair.

maggie said...

Carla, this post brought me to tears… you so eloquently wrote what my mother must have been feeling during the last part of her ALS. She loved life as much deeply and passionately. Though my mother’s sense or reality may have been a tad bit skewed- She told each of her six children (separately) that she had given up a great singing/acting career to become a mother… later in life hearing her sing and roughly play the piano I realized that my mother had deceived me. But it was her story telling and zest for life that I miss. Your gift is that you are shaking us by the shoulders and saying “listen up people –LIVE LARGE.” And I for one Carla hear you loud and clear… life is meant to be lived out loud.
I will be in San Francisco next week visiting my Irish sister. Though you won’t meet us, we will go somewhere fabulous and toast you, the wonderful, loving, compassionate and talented Carla who we met through a blog and to whom we wish safe journey.


A said...

This is my first time on your blog, and it is sad but inspiring...I wish I knew you personally - your strength of words is awesome.