Like It's My Job

I came out of the Huntington's Disease closet when I went on SSI disability, more than a year ago. Since then, I have been using my "work days," or days when I used to work, to exercise my body and my brain to fitness, with the hope of delaying the onset of symptoms of HD. In fact, I have accepted this new use of my time and energy like it's my job, because that's what it has become - my occupation and my daily grind. 

Besides exercising physically and mentally, I spend quite a bit of time (and money) in the purchasing and consumption of nutritional supplements. Maintaining a higher body weight seems to help, as well as these supplements that I take each day: 

Con-cret Creatine - Very easy to take, one capsule a day

Blueberry IQ - Two capsules daily 
(equals 1 cup wild blueberries)

Ubiquinol Concentrated CoQ10 - 
One 100 mg capsule daily 

Omega 3 Fish Oil - One 500 mg capsule daily

Trehalose - Two tablespoons daily

Turmeric Extract - One 300 mg capsule daily

Vitamin E - One 400 mg daily

Citalopram Antidepressant - One 20 mg tablet daily

What about my part-time employment, working with Alzheimer's patients? Well, in anticipation of getting rid of me entirely, when I lose track of just one more person, they have hired someone to take my place, and I only work one day a week -- Sundays, of course, since no one else wants to do it! Before I lose this position completely, I hope to solicit a few new music students via my new website

A few months ago, I put a website together for myself (like it was my job!) It is my hope to attract a few piano and voice pupils, since I have always been a music teacher. Using some you-tube videos that I made from old family movies, I included some samples of my work over the years. I asked family members for input on the site, and it looks pretty good now. I then invited a few former students and colleagues to write a recommendation, and some were kind enough to do it. 

The somber truth is, though, that the people I asked for a testimonial all know that I am on disability for Huntington's Disease. Most of them have not seen me for a long time, and are probably afraid to put their name on a recommendation, for fear that I am already symptomatic. 

By the same token, any prospective students might have the same issue. What if they fear that I am already deep in the mental and physical decline that happens with advanced Huntington's Disease? 

Bring on the self-doubt! 

Another Holy Week Reflection!

"Aus Liebe Will Mein Heiland Sterben"is a hauntingly beautiful soprano solo from The Saint Matthew Passion, which was the greatest work composed by J. S. Bach. Here it is sung by one of my favorite divas, Kiri te Kanawa. Please feel free to listen to her rendition as you read. This was from the CD made when she recorded it with the Chicago Symphony Orchestra and Chorus in 1990, when Sir George Solti was the conductor, and I was in the chorus! Here is a translation of the words:

Aus Liebe,
Out of love,
Aus Liebe will mein Heiland sterben,
Out of love my saviour is willing to die,
Von einer Sünde weiß er nichts.
- Of any sin he knows nothing -
Dass das ewige Verderben
So that eternal ruin
Und die Strafe des Gerichts
And the punishment of judgement
Nicht auf meiner Seele bliebe.
May not remain upon my soul.

I have a younger cousin (at least younger than me!) who is even a bigger fan of music than I am, and he is a published writer as well! This week Tim shared a lovely reminiscence with me, including his last meeting with my father, who had Huntington's Disease. Cousin Tim lived with his parents in Beloit, Wisconsin at the time, and my father lived there, too.

"About 30 years ago, you dropped in to eat at the restaurant where I worked. You were with your dad. I got a message from the waitress; you had written me a note on a napkin that you were Kiri te Kanawa offering to leave behind an autographed bra. I must have been telling you around Thanksgiving that I was listening to her records. So I went out and sat with you and your dad at the Toot-N-Tell. This was the first time I had seen your dad in years and probably the last time I saw him at all. I was really happy to see him. Melanie and I always have said he reminded us of Andy Williams.

It seems like you and I concocted a plot to see te Kanawa for her upcoming concert at the Auditorium Theater. I forget the exact date, but it was in March of 1985. I was so excited! For one thing it was a chance to see you outside of Thanksgiving, and for another, it was my first time seeing an opera recital.

I remember taking the bus in from Beloit to O'Hare. This was back in the days before cell phones or internet, so I  don't know how Wayne found me with a lack of specific place to meet but he did! I always chalk it up to intuition and people skills.

We got into downtown where I met up with you and Candace at Berghoff (I walk by there most work days and always think of you).  I couldn't have been more excited to eat dinner with you and another soprano. For me it was unforgettable. Then we made our way to the theater. I can't remember te Kanawa's whole program but I remember "Depuis le jour" from Charpentier's "Louise," an aria from Bellini's "I Capuletti e i Montecchi," the famous aria from "Tosca," and the haunting "L'altre notte" from "Mefistofele."  It's engraved in my heart.

I just wanted to write as a sort of anniversary remembrance. Funny how time moves! At that time Heidi would not have been 2 and Gretchen had not arrived at all. Now they are grown and here we are a little older too. It is such a special memory, spending time with both the family diva and an international diva. I just wanted to remember this with you before March actually ends. I just got in under the wire.

I hope you've had a good winter. I am ready for some warmer weather. I used to be indestructible as far as cold temps go, but the older I get the harder they are to endure. Not that I am complaining. Just observing... ;)

Andy and I were looking at photos from last year, and every time we saw you, he exclaimed "I like them, they are such lively!" Despite an advanced degree, I could not say it better myself. We're having coffee at the moment, and Andy asks me to be sure to say hello.

Happy Kiri te Kanawa anniversary!

Love,
Cousin Tim"