That leg of the journey is over ...

I don't want to write this entry.

One of the reasons I started this blog so there would be some sort of record of my medical progress as I entered this tunnel of darkness and hope.  I hoped, probably a bit arrogantly, that some person going through a similar journey in the future would find some comfort and hope within the knowledge that they are not the only person that has gone through this.  I admit that I had high hopes that I would come through the end of this journey and say, "See, it was all worth it, and it worked, and it will for you too!"

Unfortunately, I don't get to say that, which is why I don't want to write this entry.

Life isn't all about reaching the finish line first; sometimes it's about the runner that tripped on the last hurdle and didn't make it to the finish line, as much as he tried.  Sometimes it's just about the story, and not the happy ending.

So, I'm gonna take a deep breath and record this anyway.

Last week I met with my liver doctor, and received the test results for which I had been waiting six weeks.

The short version is that the Hep C viral load rose, rather than fell.  The medications weren't working.  My doctor said that I could continue treatment for another year, but that honestly there was only a 1% to 2% chance of it succeeding.

Maybe it was the fatigue and depression talking, but I just couldn't spend another year being physically and emotionally miserable, all the while spending thousands more dollars that I didn't have for such a small chance of success.  He said that he was disappointed that it didn't work, and that he'd like to see me every six months to monitor my liver, and that he also believed that new medications were coming out in three to four years that could help.

I said, "thank you very much for all your help, doctor."  We shook hands.  I left.

It was over.

There were a couple of people that asked to be called immediately after the appointment.  First, I called Michael and told him the news, breaking into tears.  Bless him, he immediately broke his plans with another close friend, and told me he would meet me for dinner.

Then, thinking that I had gotten myself under control, I called my father.  I was wrong about the control part.  I burst into tears again.  I told him what was going on, and when he said that I must be very disappointed, I said, "that's one way to put it."  He said, "Devastated might be the other?"

Yeah, that's it.  Devastated.  I had put so much hope into, and had so much riding on being "cured" of at least one fucking life-threatening disease in my life.  For the first time, I seriously began to think I would become an old curmudgeon, married to an equally curmudgeon-like, but adorable man, watching nephews and nieces grow up to get married, have children and bring them to visit me so I could dispense my wisdom from the hallowed summit of my advanced age.

I began to think that maybe I'd be able forgive myself for becoming diseased.  I had dared to think that maybe I wasn't going to be punished anymore.

When all this coalesced into my mind, I was like "What the hell?"  Do I really believe I'm being punished?  If so, by whom?  For what?

Honestly, most of my being understands that difficult and cruel things happen to people, good, bad and in between.  It doesn't matter if you're funny, kind, caring, and saint-like, sometimes things happen that there are no cures for.  Sometimes mistakes are made that can't be unmade, no matter how much one regrets them.  No matter how much one wishes that they had been smarter, and had made better choices.  That's just the nature of life.

But sometimes, just sometimes, in the back of my soul, the locked container where all the fear and doubt and self-loathing breaks open, and I think, "Yes, I am being punished," and I believe with all of me that I deserve it.

Let me make one thing clear.  I don't believe in a god that takes pleasure in punishing souls, and I refuse to be a part of any religion that does.  I don't believe in Satan or supernatural beings that are made of pure evil to continually test and punish mortals.  I just don't, all the preaching and pointing to holy books by our so-called spiritual teachers and politicians, notwithstanding.

It occurred to me that the only person that is truly capable of punishing me is ... me.  Again, I don't know if it's the fatigue and the depression talking, but I can't seem to get past the idea that I'm just not worth being cured.

Today, I kept wondering what would happen if I ever lost my insurance, and couldn't pay for medical treatment, and I think I came to the conclusion that I'd just stop being treated medically, and let the diseases take their course.  Hopefully, quickly.  I refuse to be a burden on my family or my friends.

Won't Rand Paul, the libertarians and the republican parties be proud of me if I don't contribute to the deficit in any way, shape or form?

On the other hand, I'm not too fond of pain, so this seemingly very fiscally and socially prudent course of action will probably fly out the window.  I'm weak that way.

Lest this post be completely depressing, there are some things that I'm proud of.

I got through the initial agreed upon course of treatment, and didn't give up.  I took all of my medication each and every time, according to instruction.  I've paid all my medical bills and didn't borrow a dime from anybody to do it.  I didn't bitch too much.  I also think that I only annoyed a minimum amount of people with self-indulgent whining.  I'm sure there are people that wish I hadn't backed out of involvement with their projects, but I did the best I could.  I didn't go over my allowed amount of sick and vacation days at my day job this year; a major feat, in and of itself.  As a matter of fact, when I told my boss that the medication was done, and I would be doing a better job very soon, he told me that he hadn't really notice a decline in my work performance, and that he thought I handled it very well.  Obviously, I hid the side-effects better than I thought I had.

I think that regardless of the fact that my body missed that last hurdle, my little journey over the past 9 months or so, is something to be proud of.  There's nobody that can say I didn't do the very best I could, and if they do, I reserve the right to punch them in the nose.

If you find yourself on this blog wondering about your own journey with treatment for Hep C, I can't guarantee it will work, nobody can.  All you can do is put one foot in front of the other and do the best you can and hope.  You might reach that magical finish line, or you might not, but you ran the race, my friend.  You ran the race with courage and heart.  Seriously, there should be a medal for that.

For me, it's time to look to the future, and see what is in store.  Hopefully with love in my heart, a smile on my lips, and a joyful laugh in my voice.

The Cycle ...

I haven't written poetry in a very long time.  Last night, I couldn't get to sleep because an image kept flitting through my mind, so I decided to write it down, and see where it took me.

The cycle of the day pauses sometimes.
A moment holding back eternity.
Bravely a sliver of sunlight teases.

The dancing Wind laughs at a cosmic joke.
For skipped heartbeats, I never understand.
The next beat?  A glimmer.  My dance begins.

I wonder if Night minds a late entrance.
Perhaps not.  After all, She's never gone.
A pause.  A pounding.  I feel the stars dance.

I giggle at a soul's perfect vision.
My eyes can't see stars.  A dancing heart can.
There is a simple rhythm in my life.

In the briefest serenity, I hope.
I pray those who care will walk next to me.
I hope their memories are that I lived.

I lived when life was full, and joy was all.
When laughter was innocent and carefree.
When we danced on the wings of evening Winds.

I hope they remember that I was whole.
I was free for the briefest of seconds.
When the Wind would dance and the Sun would laugh.

If they do, they'll know I'm dancing on Wind.
Laughing with the Stars; joking with Sunlight.
Knowing that the Cycle begins again.

Epiphany ...

I had an epiphany some years ago when I was young and trying to figure out what my place in the world was.

At some point, I realized that the only thing that was truly being asked of me on a soul level during this life time was to learn how to love.  It was a HUGE earth-shaking revelation to me, which was followed by the realization that I didn't really know how to love, and that I'd have to learn.  Oh, I was certainly capable of love.  I think that all beings are capable.  It's the gift of the divinity that surrounds us and permeates us, or perhaps it's just the gift with purchase of our humanity.

But to really love?  I didn't know if I had it in me.  I was selfish and self-protective and my armor was 10 feet thick because I didn't think I deserved to have anybody love me, so why should I love them?  They'd just ricidule me and then leave  I sometimes still don't think I deserve it, but I've gotten much better.  It's especially difficult when one is being bombarded by hateful messages from politicians, church-leaders, neighbors and media outlets.

To really be able to love doesn't just mean to feel wonderful in the presence of family or friends or lovers.  The character of Lao Ma on the television series, Xena, says to Xena that it's easy to love somebody who loves you back, it's kind of a good business arrangement, it's more difficult to love somebody who doesn't love you.  (Forgive me, Xena fans, I know I'm paraphrasing.)

I'm learning, very slowly at times, what it means to be able to extend that benevolence, understanding, compassion, and forgiveness against those people who hate you, who actively preach against you and demonstrate and call you horrible, horrible names and accuse you of unspeakable acts, and what it means to get past one's own fears about rejected and loneliness and just love without expecting anything in return.

I must admit that it's difficult for me.  I sometimes feel like I'm seen as the enemy by a great deal of society, feel rejected, less than, hopeless and scared.  When somebody like Fred Phelps, Ruben Diaz in the New York state senate, Michelle Bachman, and the Pope spout off their anti-gay rhetoric or somebody calls me a "faggot," I get angry.  Worse, I get scared.  Anger and fear will get in the way of love, and it takes an extraordinary act of calmness, trust and forgiveness for me to get past it and get to love.

Some years ago, there was a television show called Touched by an Angel.  Many of you will remember it, as it was very popular.

There was one episode with Wynona Judd that touched me deeply, and she peformed a song in the climactic scene that speaks of how I feel about love.  In a world where hatred and fear is spoken of constantly, and talks about love and compassion are few and far between, it behooves me to Testify to Love.  This song reminds me that I am not alone in this journey to learn how to love.

Here is the clip from the show, and the lyrics follow:

All the colors of the rainbow.
All the voices of the wind.
Every dream that reaches out.
That reaches out to find where love begins.
Every word of every story.
Every star and every sky.
Every corner of creation.
Lives to testify.


For as long as I shall live, I will testify to love.
I’ll be a witness in the silences when words are not enough.
With every breath I take, I will give thanks to God above.
For as long as I shall live, I will testify to love.


From the mountains to the valley.
From the rivers to the sea.
Every hand that reaches out.
Every hand that reaches out to offer peace.
Every simple act of mercy.
Every step to Kingdom Come.
All the hope in every heart will speak what love has done.


For as long as I shall live, I will testify to love.
I’ll be a witness in the silences when words are not enough.
With every breath I take, I will give thanks to God above.
For as long as I shall live, I will testify to love.

That clip still makes me cry.

So, do me a favor today, take the time to hold the hand of your closest friend, your lover, your wife, your husband, your son, your daughter, your pet, your neighbor, tell them that you love them, and then both of you together turn to love somebody else.

I'm pretty sure that the world will be a better place for it, and even if it isn't, you'll feel better.

I'm getting a tattoo ...

Heya, folks,

I went yesterday to see a tattoo artist about getting another tattoo.  This one will be a tribal tattoo on my upper right leg and right buttock (or ass cheek as I like to call it), and will include a symbol for the Sun to represent the masculine side of myself and Spirit.

I have a tattoo around my left bicep.  I got it when I got divorced.  As I like to say, she got the house and I got a tattoo.  For ten years I've been enjoying the feeling of individuality and beauty that I think it lends to my body.  Nobody else has this exact tattoo, as I modified another design to include the pagan symbol for the moon, which represents the femininity of the Goddess and that which I carry inside me.

I've always wanted to be physically beautiful.  I'm not.  I don't scare small children, mind you, but I'm not a George Clooney, or Hugh Jackman or Cary Grant.  Let's just say that as I get older, the wisdom gets greater, but so do the wrinkles.  I've never had the drive and the physical stamina to spend hours and hours at the gym, as my interests tend to run toward the artistic and intellectual.  This, combined with the genes and eating habits I inherited from my family, tend to make it difficult to keep trim and in good shape.  However, with just the tattoo I have, I feel a bit better about my body and what it communicates to people, and if I feel better, I function better, and don't come off as such a loser to folks I meet in the street.  So, I think that this new unapologetic addition to my body will help me inside and out.

Why now?  Well, I directed Medea this past year, and said that if I got through it, and it came out well, I'd get myself a tattoo.  Well, I did get through it, and it did come out very well, so I'm putting aside some of the money from my annual holiday bonus (albeit a bit guiltily, as I should be putting every penny in the bank for medical stuff), and I'm getting my tattoo.  The interesting thing is that since it will cover my thigh and ass, most people won't be able to see a good portion of the tattoo.  I have to admit that there is something dark and sexy about decorating a part of my body that only a sexual partner or the guys in the gym shower are going to see.  Mind you, I don't take showers at the gym, and really have not been much of a participant in the dating scene for a long time.  This should add a bit of spice to my sex drive, and this could be a really good thing for me.  Not to mention, it could also get me more motivated to get into a regular exercise regime.

Although it's going to take a while to finish the tatto (at least two to three sessions), I'm very excited about it.

Plus, the tattoo artist is gay, adorable and there seems to be a really gentle and humorous soul behind his artistic eyes.  Win, win, win!!

Travis

Down the Rabbit Hole ...

Heya,

"Down the Rabbit Hole" is what I wanted to call this blog, but since Blogger says it's unavailable, I decided "The Year of Creative Healing" would be the most appropriate title.

It's halfway through December, 2010, and in the next month or two, I'm going to start treatment for Hepatitus C.  The treatment should last about 6-9 months.  The doctors tell me that it's going to feel like I have the flu and one doctor likened it to being on chemo ... for 9 months.  There is a new medication that is being released by the FDA to use in conjunction with Ribavarin and Pegylated Interferon, and it should raise my chances of being "cured" of the Hep C.  What throws a wrench into the works is that I'm also HIV+.  It could all be for naught.

I've actually been on two of these medications about 10 years ago in the clinical study held at USC for Pegylated Interferon.  It was difficult, and I found myself weak in both body, mind and emotional life.  I eventually had to leave the study because it was so hard, and I couldn't do everything I had going on in my life while on it.  This time, I know what to expect, and I am planning my life accordingly.  The possibility of permanently getting rid of one half of a serious physical problem is a real temptation, and it's kinda now or never.

I've had Hep C for at least 15 years, if not longer, and my liver enzymes have been elevated for a very long time.  So much so that every time my doctor sees my blood test results, she runs around the room in a panic, and I have to get yet another ultra-sound.  It's time to get this condition under control so I don't die from liver failure like my friend, Rae, and to make sure my poor doctor doesn't have an epileptic fit.

I've basically taken a year off of everything in my life, except my day job.  I'm a legal secretary by day, and an actor and stage director for the rest of the time, so I am used to doing many things in addition to my job.  Just working a day job is sort of like doing nothing to me.

It occurred to me that just because I can't commit to projects that involve other people during the next year, it doesn't mean I can't still be creative and put the year to good use.  Things like writing, quilting, gentle hiking, exercising, photography, museums, poetry, and the loss of the 40 extra pounds I've been carrying around are all things that I could use to keep the creative juices flowing.  I'm also interested in getting a fresh perspective about life and the world.  I have this sense that there is Divinity in the simple, the fragile, and the ephemeral and I'd like to spend some time in the search for those things.

Hence this blog.  This is a way for me to keep track of the journey.  Not only the boring medical facts and things that happen to me daily, but a way for me to keep track of the creative side of things as well.  A place to post some poetry, photos, essays and any revelations that might occur to me along the way.

My hope is to come out on the other end of this journey with more strength, serenity, courage and compassion than when I started.

As an actor at the RSC said when they were getting close to opening a production of Richard III, "it's time to be brave."

Travis