The Pajama Game

Just got home after my first gig at Parkside Lounge. Here in the studio..reggae plays softly in the background Francesco our guest from Rome, now a dear friend and a great painter is hard at work painting..he usually paints all night every day..
see his work at www.homepage.mac.com/francescomasci.

Tonight I could hardly leave the house..after 4 and 1/2 hours of sleep last night I headed up to Mt Sinai to see Dr Alvin Tierstein..the pulmonary grand master as I try to get to cured from the cure I was on for Hepatitis C.

Tierstein has a Sarcodosis Clinic and research study on this elusive auto imune disease. People who know me well..ie who see in person know that I have had a Sarcoidosis like symptoms at the end of my Hepatitis protocol.

Dry cough, shortness of breath on exertion. last year this time I was doing 4 to 5 days a week of 1 1/2 hours of aerobics…today I could step up and down on a box for 3 minutes!!! The technician put me on oxygen!! Apparently the oxygen in my blood was going DOWN with excercise…tonight before my performance the great voice teacher (and singer) Barbara Meirer rightfully said she sensed that I wasn’t letting go of carbon monoxide….yes!
Barbara and I met at Debbie Harry’s party for Blondie’s induction into the Rock and Roll Hall of Shame as the great Chryssie Hynde refers to it,and instantly were ‘reunited’ as if we have been friends for decades… the same night I met Josh Kilmer Purcell , one of my newest ‘real ‘friends ..check out his book
the whimsical and earnest “I am not myself these Days” www.iamnotmyselfthesedays.com

Anyway…I wasn’t in the mood to go out, much less perform, much less leave my bed…I slept for three hours and then woke up at 8:15pm, gig at 9PM…..How do you do it??/people ask…always a question that vaguely annoys me…how do I do it?? I just do it..there is nothing else to do in order to do it except to do it!

I decided since I don’t fit in ANY of my clothes since I gained 20 pounds from the meds (everyone else loses 20!! it is not often nice to be special believe me!)
That I would wear pajamas..it satisfied the part of me that didn’t want to go out plus it gave me a look!!!!!!as well as a theme! I could wallow a bit in the fact that I am still unwell, invalided in many ways and scared that I am not going to get well.

Now that I am healthier I have to face a thought I was avoiding..how few of the people who I thought were my friends took my illness seriously or how few of them who knew I was going thru it ever addressed it. I spent 6 months virtually alone with just a few people checking in on me. I didn’t care when I was sick because in a way who wants to see anyone when they are sick? Any way I am a loner in a big way but the truth is between the people who avoid anyone who is sick or in need and ones who think you are over, a loser or in some way not of use , and the ones who are afraid of sickness and death…it is quite stunning.

Of course there are the people who did try to help me.But after all my criticism is of myself, how I continouously make excuses for people who do not show up for me because I do’t want to accept how much I cover for people so I don’t have to face the truith about my relationshop with them. Of course everyone has the same issues and problems as I which is why I feel I can and should talk about it here.