I’m in the studio this week recording songs for a new record. Not the record that is coming out any time now, a record to stay in the cans for a year or so and to be released at a later date. The idea is I don’t know how long I’ll be singing so I need to get this stuff done now. I have had more than one moment during the session where I haven’t been able to make my voice do what it is supposed to do. It may be that it’s harder to control my diaphragm or it may be that I’m just weak and tired. Either way it is a peek into the distance of an impending goodbye and it cut deep. How will I live if I can’t sing?
So much of the time in the studio has been magical. The quips of the piano player, the inspired brilliance of the musicians, the support of these dear guys who are such wonderful human beings. I love the moment when a group of musicians happen on an idea all at the same time. There’s nothing like it, except maybe a first kiss when you’re not sure who initiated it. Pure magic. The toll of course is that it’s taking every bit of me just to do this.
Today I told Jon Evans, the producer/bass player that I didn’t know how to be professional in the studio and have ALS. The day had begun with me trying to wrestle with my new leg braces. It took a half an hour to get them on and a lot of tears. Plus they’re ugly as sin and don’t accommodate a lot of my clothes and shoes. I will say that they make me walk MUCH better so there’s that. Later at the studio a car salesman came by to show me a wheelchair accessible PT Cruiser convertible. I thought it would cheer me up to see it but then he told me he had driven it down here for a man with ALS but in between the ordering of the car and the delivery the guy died. So did my good mood. I went back to the studio and tried to sing but the notes just don’t come out how I want and one song was so hard to do energetically that I had to stop. I can’t even get through this song that I’ve sung so many times. It’s times like this that I don’t know if I have the emotional strength to get through this bitch.
Jon was sweet and encouraging. He explained that this was hard for him too but being from New England it doesn’t show. He also pointed out that while I can’t do what I want to with my voice I can still do more than a lot of other singers can. It’s just a matter of shifting perspective. He put on the next song and told me he knew I could do it. I went up to the mic and put on the headphones and there’s his lyrical bass lines and David Rokeach’s sensitive drums having a conversation with me and John R. Burr’s breathtaking piano and these lyrics:
When this old world starts a getting me down
And people are just too much for me to face
I’m gonna climb way up to the top of the stairs
And all my cares they drift right into space
Oh on the roof it’s peaceful as can be
And there the world below it don’t bother me
So when I come home feeling tired and beat
I got to go up where the air is fresh and sweet
I get far away from the hustle and crowd
And all that rat race noise out on the street
On the roof it’s the only place I know
Where you just have to wish to make it so
Let’s go up on my roof.
This is the part where I always tell you about how I felt some sort of light or redemption – a moment of clarity, of being fully awake. And I did. And there was. I try to write these moments poetically so we can all find some beauty in this shitbag. But I don’t feel like writing about that today. Today I want to write about being scared and sad.
I wonder sometimes about spilling my guts on this blog. How is it for my family whose grief is as big as mine? For my friends who give and give with no hope of repayment? Is it easier to envision me the plucky fighter with the wicked wit who doesn’t have these days? Are my tales from Lake Woe –is-Me getting old? I wonder these things and while I try (and usually succeed) every day to laugh and have genuine fun, here on this blog I think it’s right that you know that I’m struggling just like everyone who loves me is to make sense of all of this. I haven’t even begun the tough part of this disease and it’s already so much to hold. Most days I laugh a lot and don’t cry at all. Most days I am filled with awe and gratitude. But today I feel very small and I just want someone to hold me.
Thursday, March 13, 2008
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Thank you brave dear heart for being real with us.
Tears and great love flow, flow, flow reading this entry.
I am holding you so very very close.
i hope that i may be able to meet you one day. you are an amazing woman. i am glad to have discovered your 'blog.'
thank you. If I know who you are maybe we can meet. Do you have a blog on this site?
What a truly amazing gift you are giving by 'spilling your guts' on this blog.
I feel so honored to witness you (and your poetry and your humor and your fear) as you tackle this "shitbag".
I look forward to seeing you in May.
Love Lisa Beley
Yes, it's painful to read, but I so WANT to know about days like this.
Reading entries like this make me feel close to you and love you all the more -- if that's possible.
It makes me feel less far away, here in Boston, when all I want to do is hold you.
I'm glad that being filled with awe and gratitude is part of the picture for you (and you've certainly helped it be part of the picture for me), but being scared and sad is real too. I'm relieved that you decided not to hide this fact, and I'm touched by your ability to express it.
I wish I could adequately express my heart-wrenching desire to take on some of your fear and sadness...
I just want to record that last night, after that difficult day, you looked radiant and beautiful, and you made a joke about your clunky braces that had Kaila's 8 year old daughter Lucy in stitches. Also, that you showed up--this is the thing about you--you always show up. I love it that you show up real, just how you are. This ALS thing is a bitch. I'm with Jon, a fellow semi-stoic New Englander. And I love you more deeply than ever.
are there any future "public gigs" planned that we could come to see you perform? hope so...
You know you have to be honest. If you try to spin it, to always be the plucky Canadian, eventually this blog won't serve you anymore.
You aren't valuable to us because of your amazing ability to find poetry in the bitter mess of ALS. You are valuable to us because you are you.
Look around at all these people who love you, me included, and you won't see one person among us who wants you to take care of us.
We want to take care of you. And part of that care is hearing these hard and dark feelings.
Thank you so much for sharing in this way. I am so far away and so desperate for inclusion in your life, even if it is virtually.
I am sorry the singing is slipping. That must be like a death you have to mourn. You have a beautiful voice, it is heartbreaking to learn that it might be going sooner than you anticipated. I am mourning for it too.
I love you,
I am overwhelmed and in awe.
Thank you for deciding to share this journey you, your son, family and friends are on. I feel them with you.
I can't express how grateful I am to have your honesty and spirit shine thru the good and the bad of this.
You are in my thoughts and prayers every day.
Keep spilling, singing, and writing as long as you are able to. You are not alone. We are everywhere.
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