Support

I've finished a funding proposal for IAHE and am pleased with the outcome. We are seeking funding to participate in the Co-Existence Festival that is coming to New Brunswick this May. The festival is centered around an international touring art exhibit from the Museum on the Seam in Jerusalem called Exhibition Coexistence. Rutgers and the city are sponsoring the exhibit which will be displayed throughout New Brunswick and the Rutgers campuses. The two day festival will feature live music, food, arts & crafts vendors and the Family Fun Zone where IAHE will have a tent and lead workshops and multicultural arts projects for kids. The proposal I wrote will be submitted to a few corporations later this week and then we wait and see. I am crossing everything I have two of!

I went to the bereavement group last night only to find out that I had the wrong night. I walked in and a group was in session, except it was for spouses over 55. They took one look at me and told me I was in the wrong place. I think my group actually meets next week. I need to follow up on that. I had a rough weekend last week at the Paper Mill summer auditions. We auditioned 500 kids for our summer musical theatre program, and it is a very long Saturday indeed. I am pretty much isolated in the theatre with the other panelists for 8 hours. We must turn off cell phones so as to not interrupt things. In past years I would step out and call Lance a few times, check in, touch base. When he was sick I would call even more frequently to check up on him and whichever caregiver would be with him that day. So last week I had a few moments when I actually forgot that Lance had died. We'd find ourselves in a break moment, and I reached for my phone to call home. I'd flip open the phone only to have reality come crashing in, nobody is at home but the cat. No one to call. This didn't happen just once, but it happened three times that day. I got angry with myself - what's my problem - how could I forget? It really set me off and by the time I got in my car to drive home that night I was pretty blue. My counselor tells me this is not so unusual, but still, I felt like I was crazy.

This coming Saturday is a meeting of the NY Amyloidosis Support Group in Manhattan. I will be going and meeting with the president of the Amyloidosis Research Foundation to talk about the large music benefit I want to host next fall. I will have some new organizational logos to share with her and will get the lowdown on a dinner-dance benefit they are throwing in April at NYU Kimmel Center. I'm not sure that I can afford to go, but we'll see. Maybe I can work at the event instead of paying to go. I'd love to be able to contribute to the Foundation, but that's just not possible now. I am trying to make contributions in other ways. Dr. Comenzo will be the speaker at the meeting which should be enlightening. It's hard for me to keep up with the amyloidosis updates I still get via the email listserv group. Back when Lance was ill I devoured all of the information I received looking for something that would help Lance or at least explain to us what the hell was happening. Now when I get the messages I usually skip over most of them. I don't need to know about every clinical drug trial in the pipe. Amyloidosis consumed my life for the past 2 years and I need a break. I don't contribute to the group too often because I don't want to bum out the patients that are still fighting hard to beat the disease. New patients will post looking for hope and optimism, and I do not have much of that to offer. The disease took Lance so quickly and mercilessly that I cannot be of any help to those currently suffering. Lance's suffering is still so clear in my memory that reading about the complications others are facing hurts too much. The support group meeting will be a lot of this, but there will also be others there who lost loved ones from this rare disease, so I look forward to communing with those folks.

After the meeting I will be zooming down to Asbury Park to see Patti Smith at the famous Stone Pony Saturday night. Many of my friends are going and it's become an annual event. Lance and I have a friend, Jack Petrucelli, who now plays with Patti Smith as well as the Fab Faux and Joan Osborne. Jack wants to be a part of any NJ music benefit I am planning, but he is such heavy demand it will be hard to pin him down to a date. I am back to square one in finding a place to hold the NJ benefit. The one club I was counting on, The Wonder Bar, is about to be the next casualty of the Supreme Court ruling on eminent domain. The bar is directly across the street from the Asbury Park Convention Center on a prime corner, and the Asbury Park Development Corporation wants the land. The bar is fighting the take-over, but currently they are not booking any music past March. I have a few other ideas on where the benefit can happen, I just need to make time soon to go down to Asbury and scout them out. Maybe next week.

~Lisa

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