Sunday, October 18, 2009

Nostalgicus Interruptus

It's Sunday evening and I'm suffering from acute nostalgicus interruptus. My undergrad alma mater, Vanderbilt, had homecoming this weekend and I was all signed up to attend. I was especially excited that there would be events for the 25th anniversary of the founding of the Association of Vanderbilt Black Alumni. There were many friends that I have thought about recently that I hoped to see. Alas, it was a typical lupus week. Chest tightness and palpitations led me to my doc and to an appointment with a heart specialist. Both thought my symptoms warranted a work-up (battery of tests to determine if a problem exists). I spent 24 hours wearing a heart monitor and I'm scheduled for a fancy nuclear medicine stress test in two days. Between the symptoms and tests and my already pressing need to sort out the old house, I had to stay home. Pooey.

Ironically, I seem to have already given myself the stress test. For the past three days I've worked hard at sorting, packing, and delivering stuff. I've hauled huge bags of trash, carried boxes filled with old office records, helped move a dresser from my daughter's room to the garage, spent hours feeding paper into the shredder... I didn't plan it this way, I just felt energetic and recovered from my recent Rituxan therapy, and so I worked when and how I felt like it. Needless to say, I've not had a single twinge in my chest. Not one. The cute little bottle of tiny nitroglycerin tabs that the cardiologist prescribed remains sealed.

None of the above means that I've had a bad weekend. I'm sitting on my bed, feet up, listening to Patti LaBelle's powerful voice. This evening I combed through YouTube to hear a variety of selections from Al Green, the Isley Brothers, and Patti. It was still nostalgia time, whether I made it to Nashville or not. I was focused on the music that I was hearing when I was in college. It featured strong voices, defined rhythms, and words that made sense. Lots of it talked about love and peace and the "good stuff" in the world. I was first married after my sophomore year at Vanderbilt, a whole 19 years old. My husband was in his mid-20s and had already mastered the art of using music for seduction, but our listening choices also extended to revolutionary soul (Gil Scott Heron, Stevie Wonder), jazz (Pharoah Saunders, Jazz Crusaders) and more instrumental rock (Santana).

Hmm, that could be a formula for a good Sunday evening. Stop all work, put your feet up, and focus on music that you love. I learned about formulas from my daughter. When she was four she came home from school and said, "This is how you make friends at my school. You stand by somebody in line and you hold their hand." The formulas were simple and straight-forward in those days, but she has continued to enlighten me on occasion, summing up her way of doing something and presenting it like a gift.

The association of men in my [past] life with music is a strong one. I wonder sometimes why many of the women I've been close to have not had strong musical preferences and affiliations. In the string of important men (members of that group shift from time to time) there is a very particular classical music fan and accomplished violinist, a rock enthusiast (but no "California rock" thank you), a jazz artist who played with a high school band as a kindergartener, a talented dancer who stayed current on the latest rap and contemporary music, and one man with a lovely voice and multiple instruments who used it all on sacred music. What a range. And of course, that's not the whole of the group.

Patti LaBelle is in my face singing "Love Never Dies", a tribute to one of her sisters who succumbed to cancer at an early age. This moment if feels like a commentary on the ability to focus on the positives in my past. Patti LaBelle is always in your face when she sings. Whether you love her or hate her, you cannot ignore her when she is singing. One of my favorite New Year's celebrations was Luther Vandross and Patti in concert at the Fox Theater in Atlanta.

Hearing live music is still one of my favorite outings, and it has been far too scarce in recent years. I was every bit of grateful this week when I was able to attend a concert at a local church. The music was modern classical, a pianist, a classical guitarist and a violinist. Fab. Makes it worth taking your meds and getting out of your house. Once I had a list of performers that I wanted to hear. I envisioned traveling to catch their concerts, using my vacations and taking my daughter. Several years ago, Dayna and I saw Jill Scott at Ryman Auditorium with her informing me that she was the youngest attendee. I could have repeated that scenario a million times, following all my favorites, but I was too ill for that kind of plan. I see myself now at the point where I can make my list.

Good lord, am I still writing? Music loosens my fingers and lubricates that connection between my thoughts and my hands. I'll have to continue in my head.



  1. Hi Essiewb,

    Sorry for contacting you through a comment. I couldn't find a contact email on the blog.

    I wanted to pass along a new Lupus resource.

    It is a social support group for those with Lupus.

    We have a dedicated Rheumatologist to answer any Lupus questions folks may have. (Joe Shanahan is our doc. trained at Duke)

    We originated as a group of physicians dedicated to helping people online using all available technology. The idea is that in this manner a fewer number of doctors can help a large number of patients.

    We are also incorporating health trackers soon. Those with lupus can track their meds/lifestyle/environment/etc.. to see what may contribute to flares.

    We will be looking for associations (Trends in complex data sets of the cumulative data from a large community of patients. This is done in an anonymous automated manner). Our hope is to identify new correlations to help us better understand Lupus and to potentially guide us to new treatments.

    I'm hoping you will help us spread the word. Any blogs, group messages, links are greatly appreciated. We will need a large number of people to participate in order to make head way via statistically significant relationship in the data.

    As a physician we would love to have you on the site! We do already have a dedicated Rheumatologist on the site, however, the more physicians the better. If you are open to it we may need some additional physician assistance in the future.

    Warm regards,

    Art Kaminski MD
    President - Physicians for Patients

  2. Sorry your missed the homecoming party, but it sounds like you made your own! Hope you make a good grade on your tests. LOL

    Re shredding: did you know there are people who will do that for a fee? You can take your stuff to them, or if you have enough, they'll come to you. Check the yellow pages. 8^)

  3. Mary, thanks for the help. Found a shredder-yippee!
    Art, consider your info published. I'll put it into a blog entry in near future.