If you believe in Fairies, clap your hands.

Kathy, Edith and Mac are heroes. They sat through four hours at the ALS clinic with me (plus blood tests and 2 hours of driving ). A full day! My dear friends took meticulous notes, wrote down everyone’s names while Mac and I endeavored to supply the much-needed jokes.

Upshot: Dr. Miller, who has seen over 1000 ALS patients believes “in his heart of hearts” that the other neurologists are correct and I do have ALS. He is still running me through a battery of tests – lyme etc – which I’ve had twice before but these tests are apparently more involved. I’ll get those results back in 3 weeks or less and still hold out some hope.

The meeting was overall very positive – I’m the ideal patient – young ( no really!), positive ( no really!) huge support network, limb onset rather than symptoms affecting breathing, speaking and swallowing and also early diagnosis which means earlier ingestion of the Rilutek which could buy me as much as 20 months. And my lung capacity is at 108% of normal people! Big ups to singing and yoga!

I will be assessed for orthotics to help me walk and it’s recommended that I start using a walking stick ( I want one like Gandalf but it’d be a hassle to schlep around). I’m also being assessed to see if I can drive again with hand controls instead of foot pedals. This poses a difficult ( for me) question about my Miata: do I spend a ton of money to convert a car that I may have to chuck shortly if the disease progresses rapidly and I am in a wheelchair sooner rather than later? Is it worth the money or do I get a practical car now and adapt it.

Now before I get started on practical cars (cough cough), let me just say that with rare exceptions, the minivan drivers I have met are awesome, inspiring women who are generous and nurturing to a fault – like Wendy Darling from Peter Pan was with the Lost Boys. Taking care of everyone and cheerfully departing from Never-never Land to face the real world. I want to be as thoughtful and wise as them if I grow up.

But I am not Wendy Darling. I am Tinkerbell – a fiercely loyal, sometimes misbehaving brat who needs a small car and room to fly. I like Never-never land because we drive sporty convertibles there and not minivans. Hell, my last apartment was the size of a minivan!

Isn’t it funny how the little things – the car you drive, the shoes you wear – eclipse the gigantic things – like when it’s time to leave the real world for Never-never Land or destinations unknown. I guess it’s because we don’t get to pick when we get there or how we get there, but damn it, if I’m walking there I want it to be in cute shoes and if I’m driving there I want it to be in a sexy convertible.

One thing I do know is that I know how to find Never-never Land. Second star to the right, and straight on until morning. ...

Dirty Little Secret

So today is the long ass appointment at the ALS clinic and I'm back to that creeping hope of misdiagnosis. I grew up thinking that asking for what you want was a character flaw - something shameful - but I've worked hard to move beyond that and a big step is to proclaim loudly in a public forum: I want to be one of the 15% misdiagnosed. I want this all to be a wild and crazy dream and if it is, I promise to remember everything I've learned.

Brian's Song

I missed my Monday yoga class so I went on Thursday instead and I had the privilege of partnering – perhaps by sheer coincidence or perhaps by the divine intervention of our divine yoga teacher, Barbara –with a woman whose husband is dying in hospice after a 4 year battle with ALS. I have seen this woman, Mary, in class so many times and never had a clue she was contending with something so huge. She was just a pleasant looking woman my age. Everyone carries with them this backpack of stories. Each of us has a story that will break hearts, a story that will delight, a story that will not allow people to look at you the same way ever again. I wish I had taken the time to hear people’s stories before I came to conclusions about them. I think I was just arrogant enough to believe that the stories I made up in my head for them were more interesting than the real ones. That’s my new resolution. Hear more stories.

I personally don’t believe that prayer can save a life or cure a disease but I DO think prayer can heal and healing is a very different journey than curing. It is in that spirit that I urge you - if you’re the praying type - to include Mary and her husband Brian in your prayers. I am sending my intention to Brian that he feel wrapped in the arms of peace, light and love in these final days.

Whatever You Love, You Are

Tonight I saw Ann Randolph do her wonderful solo show Squeezebox at the Marsh as part of the “Marsh Rising” series. She was vintage Ann: bawdy, brave, vulnerable, smart, wickedly funny and insightful. It felt so good to be watching someone I like and admire pour their heart into their work. A little sad I must admit since it was not that long ago that I was doing a “Marsh Rising” myself and had hopes of a run. I had fallen just before the show ( no doubt from the ALS) and was performing severely injured. It was the last full evening of the show. My swan song.

I will keep working, keep creating and I will always know that I had a great show that should have had a longer life and that will be enough for me, just to know it for myself. (Who am I kidding? It's not enough.)

In the meantime, Mac had a terrifying experience at his school yesterday – a man with a gun on campus – the whole school in “lockdown” – lights out, doors locked and students huddled in the corner. He told me he was probably more concerned because the other kids haven’t realized yet that “bad things don’t just happen to other people.” Amazing how the theme of the fragility of life keeps getting hammered into my head. I get it, okay, I get it. We sat on the sofa that night, he and I, two war vets, silently commiserating as we watched a video.

So I was reading this Rumi poem and it ended with the line you see on the fancy greeting cards “Whatever you love, you are.” I've read it before but this time for some reason it hit me with this enormous force – a sawed off shotgun blast to the chest, ripping a round gaping hole right into the center of my heart. I started to weep. But then golden light started to enter the hole and with it incredible joy, which didn’t push the pain out, but just spread itself around and through the pain and I looked at Rumi’s words again. Whatever you love you are.

I am a solo play. I am a song. I am laughter. I am a practical joke. I am all of you. I am Maclen.

I am a poem.

all you need is love

Okay, so if this is over the top, let me just say that I get to do that now.

Attention loved ones: I know you are tuning into this blog and I want you to pay close attention to these instructions. They are inspired by waking up this morning and reading Alison’s blog and also from reading a note my Dad wrote to her about a previous blog which she kindly forwarded to me. It all got me to thinking about how my Dad has been reminding me lately of the guy he was when he was my age. I was Mac’s age then and we shared an apartment. It was an amazing shift in our relationship as his heart was cracked wide open – probably from his marriage ending – and we would talk about anything and everything. I felt like I knew him to his core then and I feel like I’m getting that guy back lately. Bittersweet.

I’ve had that experience a lot lately with different people. I get to see them in a deep, rich and intense way that I hadn’t before and it’s like they reveal the beautiful child/soul in them. Ali writes so eloquently about the heart-opening that she is experiencing. (reminder – she’s linked to my blog).

But I digress. Here are your “instructions”:

Those of you who love me have made it clear to me that we are in this thing together. If that is the case I ask this favor of you (those reading in Canada, I ask this favour of you) - don’t let the sad part of this take over your relationship with me. We can be sad together for sure, but let the hurt and pain of this crack your heart wide open like a walnut and let in all the love that you can – love from me, from your children, your partners, your friends. Accept it even if it is scary to be loved so much and to love so much. Don’t waste your time with reading the whole self-help book but read the jacket blurbs closely and take all the titles to heart. Be grateful all the time. Carry your favorite poem in your wallet. If you don’t have one get one. Be kind to yourself. Acknowledge wonderful experiences quietly to yourself or in your “out loud” voice – sand between your toes, a baby’s rolls of fat, a yummy muffin eaten in the morning sun - and mentally bookmark those experiences for when you need them.

This would be a big favor (favour) to me. I need to spin this ALS thing positively. I read about the health challenges in store for me and I don’t want them. They scare me shitless. I want to run away but I can’t. All I can do is put one foot in front of the other, open my arms and move forward into this experience even though my stomach tightens from the fear of it. There has to be some meaning to all of this and knowing the people I cherish in my life can lead a richer, more beautiful life – a happy and fulfilled life – will give me that meaning and so that courage to take this walk towards the unknown.

A sax player I barely know sent this response to my Rumi blog which seems appropriate to pass on. I think it’s the next part of the poem I quoted but I could be wrong.

AND SO IT IS THAT IN THE MOMENT YOU PLEDGE YOUR HIGHEST LOVE, YOU GREET YOUR GREATEST FEAR. WHEN THE HEART WEEPS FOR WHAT IT HAS LOST, THE SPIRIT LAUGHS FOR WHAT IT HAS FOUND. YOU ARE A NOTHING SURROUNDED BY GOD, AND FILLED WITH GOD, IF YOU SO DESIRE.

My Magnum Opus

I was talking to my friend Alison about the Woody Allen film CRIMES AND MISDEMEANORS yesterday– one of my favorite films. In particular we talked about the final image of the recently blinded rabbi, played by Sam Waterston dancing with his daughter at her wedding. The essence of bittersweet – the overarching pain that he can’t behold her in her wedding dress - the delight to be there with her for this important moment - our sense as audience members that life isn’t fair – the good are punished and the wicked lead the life of Reilly. And yet. And yet. There is dancing and life goes on.

Later in the evening I received an email attachment from a friend who has been sending me Ray Charles tunes. I call them my “Ray of the Day” and they are indeed a ray of light. They all tell a different story and seem to fit the mood I’m in when I get them.

Alison and I talked about how artists give us these moments – the rabbi at the wedding, Ray Charles singing Blues in the Night at an impossibly slow tempo, the lines of some of the poems I’ve quoted on this blog – and for a brief moment those works of art lasso that vast, unknowable grief and joy that is life and pull it into this one crystalline moment. We watch a film and we weep, we listen to a beautiful violin piece and the hairs on our arm stand on end, we feast on a writer’s words and in doing so that vastness of this world, this life – as well as it’s insignificance and brevity is right there if just for a moment.

A new friend told me that he never really understood the concept of “bittersweet” until my concert and it made me think. I had hoped someday to make the kind of art that could reveal something so painful and beautiful at the same time that the audience and I could share a knowing, that crystalline moment. Now I feel like I’m living inside one of those moments and how I choose to accept this bittersweet truth will be my art.

big day with rumi

I have this book of Rumi poems called "A Year With Rumi" and just for fun today I decided to look up December 26th which is the day I was diagnosed with ALS. Here is the poem for that day:

Your True Life

As you start to walk out on the way,
the way appears.

As you cease to be,
true life begins.

As you grow smaller,
this world cannot contain you.

You will be shown a being
that has no you in it.

On Orange Carpets and Little Deaths

My friend Lisa arranged for someone to come by yesterday and help with my living will. I don’t know if the woman – I’ll call her P – would want her name mentioned or not so I’ll just stick with P. She is a remarkably intuitive person with a wealth of information and experience. As a healthcare professional herself she was also able to talk about things like when to get an attendant, a new wheelchair-friendly apartment, etc. One amazing moment occurred when she pointed to my wonderful orange shag rug and said ‘sooner rather than later you’re going to have to get rid of this and it will be harder to do that than it will be to die. That’s the richness in all of this.”

I understood her completely. An illness like this is a series of “little deaths” as she called them. I have experienced very minor ones like decrease in energy because of my medication or divesting myself of sexy shoes but the deaths will get bigger, deeper, harder ( did that just sound like a caption for a porn sequel?) and I’m going to have to be ready.

Sometimes I walk down the street and I say out loud “It’s a beautiful day and I’m walking.” It’s hard to imagine from this vantage point saying “it’s a beautiful day and my wheelchair is faster than that stroller – in your face, stroller!” but maybe I will.

In the meantime, I try to balance the little deaths with births and resurrections – old friends I lost touch with blessing me with their presence, working on getting clearance to drive my beloved Miata again, and awaiting the visit of Annabel, Atticus, Allison and my dear baby brother Jason.

snowing in baghdad

It snowed today in Baghdad. It was not an impressive snow – it melted as it hit the ground but in my imagination it covered the war-torn city in a blanket of white making it, for a short time, clean and reflecting the sun’s light and illuminating the evening with something other than mortar fire. Do you remember snowy nights? (if you’re not from California). It would be so white and quiet which is probably where the idea for Silent Night came from. The only sound you would hear would be your own boots crunch-crunching through the snow. And the light. I would walk along the middle of the road in Vancouver at some late hour and feel illuminated and alive beyond description. I want this for Baghdad.
Until today they'd seen snow only in movies unless they had traveled. "I rushed quickly to the balcony to see a very beautiful scene," said a 19 year old college student, "I tried to film it with my cell phone camera. This scene has really brought me joy. I called my other friends and the morning turned to be a very happy one in my life."
Doesn’t that make you want to cry? We can find joy in the darkest times.
An Iraqi who works for The Associated Press said he woke his wife and children shortly after 7 a.m. to "have a look at this strange thing." He then called his brother and sister and found them awake, also watching the "cotton-like snow drops covering the trees."
I want Baghdad to gaze out at the cotton drops and stick their tongues out to catch them and then look across the sea and marvel that a black man with the middle name Hussein is a likely candidate for president of the country that has caused them such cruelty.
I want them to make snow angels over the spots where their loved ones fell.

Fuck ALS

People have told me lately that I’m brave and I feel like such a fraud. I don’t feel brave at all. I feel like me – only on some sort of spiritual isometric machine. I have wondered how honest to get on this blog. I hear friends talk disparagingly about the solipsism of tell-all blogs but I think it might be good to be truthful –even if some of what I say is painful to my dear ones. I mean there are manuals on how to live with ALS but how do people find out how to die from it if we aren’t all really honest?

Truth is I’m scared and I don’t want this. I get through the days, sometimes I have an awesome day. I laugh and try to engage with the world. But I really feel like I was born to perform for people, to make them laugh and cry, to charm the pants off of them (sometimes literally) to be forever “young for my age” to be the most fun grandmother ever, to travel and have adventures and tell stories, oh stories – I don’t have enough yet and I don’t have all the ones I’ve lived recorded and I don’t even know how to start. I have an “abstract/random” data base in my brain that pulls these things up as they are needed. I don’t know if I’ll have enough time to remember all the stories I don’t want to die with me.

I’m scared. So maybe that does make me brave since I have to acknowledge every day that the world continues to spin even though I am dealing with the only thing I said I couldn’t handle. Sometimes the pain of this literally takes my breath away and it’s hard not to fall right to the floor with it.

Okay here’s a weird confession. Almost as bad as dying, I fear losing my body. I’m vain you see. I can take getting older, getting gray eventually, I already have wrinkles – but I can’t bear the idea of being marginalized by waiters, passers by etc. Being seen only as someone in a chair. I still love yoga but I mourn the poses that are no longer available and wish to hell I’d appreciated them then as much as I do now. In the last few years I have reveled in my beautiful middle-aged self. I have felt vibrant, alive, sexy and full of purpose. I don’t want to let go of all of that.

That’s where the isometrics come in – I feel brave and scared, accepting and devastated, surrounded by love and early in the morning – all alone. It’s so much to hold, so much to wrap my mind around, so hard to find a way to describe it so people will get it.

I’ve thought maybe I should leave only inspirational stuff behind for Mac, but he’s never been one for bullshit and I think I want him to know that I am a complex human being in on an un-navigated course. I want him to know that life is indeed really hard and unfair and that all we can do is love what we got while we got it.

Like Joni said “Don’t it always seem to go, that you don’t know what you’ve got til it’s gone?”

I’m sorry if it is tough to read this. I just don’t want to turn away from this experience. I want to live it because it’s what I got.

Are we getting tired of reading about ALS yet?

My friend Leslie told me to write down my dreams. I’d been keeping track of them to share with my brother who is the dream expert but I got derailed. I think it was one dream in particular which kind of told me what was in store. In the dream, my cell phone goes off and I answer it and it’s a crank call and for some reason I know that the call if from god and I say to him “look, I know it’s you. Cut it out.” It’s one of those corny gag crank calls. ( I know, no one crank calls anymore – too old school. ) Well, this is one hellofa crank call, ain’t it?

By the way, I caught the typos in the last few blogs but I ain't fixin' them.

Ali sent me a site – 100 things to do before you die. People make lists and blog about their experiences. They aren’t dying, they’re just trying to make their awareness of that inevitability catapult them into DOING. Thinking of things they want and making them happen.

What I want to do before I die is see Maclen graduate from college, get married, have kids, find a career he likes, etc. Probably not happening. What I can do though is make sure that before I die, Maclen has all the kinds of stories written down that parents tell their kids and their grandkids about when the kids were little. That way when he is sad that his kids don’t have a grandma, he can read them the stories…or just read them to himself. I’m trying to assemble my thoughts so I can write to him but whenever I start…well it’s just too hard. I thought I would start by listing things I want to tell him, even if he already knows. I can expand them to stories later.

1) he didn’t really kick much. He did tai chi in utero. He liked to lay down sideways so my belly would look extra wide. Sometimes I would see his foot.
2) He wasn’t planned (oh shit, the stick is pink) but his dad and I knew we had to have him because he would be exceptional.
3) His apgar score was a remarkable 10 which is shocking considering I didn’t know I was pregnant for most of the first trimester. I would drink HUGE espressos and night times were for beer.
4) I knew him when I first laid eyes on him. He was like an old friend.
5) He had jaundice in the first few days.
6) The first night in the hospital he cried nonstop and his eyes were so wide and filled with tears and he seemed to be looking right at me imploring me to help him.
7) He had colic and would scream non-stop late afternoon to early evening every night for months. The rest of the day and night he was a complete doll.
8) He spoke at 6 months. He said “hi doggy” By one year he was singing songs and talking in complete sentences. At two he could recognize the word “open” on any store that had the sign and could spell the word “cartoon” backwards and by heart.
9) At two he stopped calling me “Mommy” and started calling me “Carla”I tried to convince him that he was the only person in the world who was in the position to call me mommy and he said (I think rather patronizingly) “ I know you’re my mommy, Carla”
10) He weaned himself at 14 months. He walked then too.
11) He once pulled up the top of another mom and tried to nurse with her.
12) He went to bed with music every night.
13) He had an imaginary friend named Rainer who would do all the bad things in our house like scribble blue crayon all over the wall.
14) He liked poems from an early age and wrote his first poem at 5. The first two lines went “trying to measure last days on earth. In inches, in miles, in Stevie Wonder.”

How will I measure last days on earth? Stevie Wonder is as good a place to start as any. I meant to write a blog about things I want to do before I die, but it all pales in comparison to hanging out with this extraordinary kid.

friends

Last night a group of my friends from different parts of my life met together as part of Driving Miss Craisy. I wasn't there but it sounded like an amazing event. I have a startlingly powerful group of friends with talents wide ranging and diverse and within a three hour span they had come up with all kinds of ideas of how to make this diagnosis a little easier on me and on those I love. Among the things that came out of the night was a website. If I am no longer able to type this blog or if I want to focus on the feeling zone rather than the practical day-to-day news then people can tune into www.quiltmamas.com/dmc
Yes, it's already up. That's how amazing these women are. ANother place to go is Alison's blog which is linked to this one.

The morning started with Gary coming over to help me break the news to Alicia my housecleaner who speaks very little English. It was a wrenching event which he handled with such compassion. Lynda and Gary have been in my life since our boys were two and it was brought home to me today how very dear they are to me. They have two wonderfully smart, funny and quirky kids, the older of the two I love like he was my own son. Wendy and Barry came by and did all kinds of handy work for me from fixing futon frames to hemming pants ( no more high heels for me, sadly) and Lisa led me thru some yoga with a gentle and loving hand.

THere is so much more to say but truthfully I'm too tired to say it. Maybe it's the drugs or maybe it's just the whirlwind of the last week-and-a-bit but I am bone tired. I will keep you all posted.

THINK, think about it

FInally - someone who cares about the important issues:

Jenny

Flight of the Conchords provide us with the smile of the day: