A truly depressing blog only for the strong of heart

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.