"Birds make great sky-circles
of their freedom.
How do they learn it?
They fall, and falling,
they are given wings."

-Rumi (translated by Coleman Barks)

Monday, September 26, 2011

A Rumi night


To dance is not to jump to your feet at once
and rise painlessly in the air like dust.
To rise above both worlds
is to dance in the blood of your pain
and give up your life.

Monday, September 19, 2011

To Joy

"Joyful, as a hero going to conquest
As truth's fiery reflection
It smiles at the scientist
To virtue's steep hill
It leads the sufferer on
Atop faith's lofty summit."

Beethoven has been my constant companion these past months. If you remember, it all started this summer when I blasted his 9th on the way to class every day. I stand by my statement that it is impossible to be in a bad mood when listening to Ode to Joy. Here try:


This performance occurred during the last night of the Proms, days after 9/11. You do not even have to watch, simply close your eyes and feel the tribute, the resilience, and above all, the exultation. Since the beginning of this summer I have listened to Beethoven's 9th at least once a day, usually more. And for 27 minutes, nothing else exists. It doesn't make me forget what I'm going through, but rather delivers the important message that life is worth living. Some days I like to think Beethoven himself is urging me to keep going. I'm halfway through his biography and read a few of his letters before I go to sleep. Let me tell you, Beethoven knows. He was a man who suffered much pain, who refused to take pain medicine because it would change him and hinder his musical prowess. Would his music be so mesmerizing if it did not spring from a dark place? His struggle is a testament to his commitment to life and reminds me that there are glorious moments worth fighting for. Somedays they might only last 27 minutes, but they are there.

I have been through two rounds of prolotherapy treatments, with the next one coming up in two weeks. I will be frank; they are absolutely awful. It's taken me so long to write about them because they are painful and by far the most difficult obstacle I've had to face. The first treatment in August went poorly because I walked in unprepared and overconfident. I thought I could tolerate any pain without difficulty. I was proven wrong very quickly. My mom and I went early on a Thursday morning, so I would be the first appointment of the day, and could rest the entire weekend before I had class again Monday night. We walked into my specialist office and were brought into the back room, where he conveniently has the equipment set up for prolotherapy treatments. My mom put on a heavy xray gown, while I undressed and put on a thin cotton hospital gown. I laid down on the table, belly down, and the tall attending nurse came over and asked me how I was doing. I smiled at her, and told her I was fine and have been through a lot worse. She did not say much more, but reminded me she had stress balls I could squeeze during the procedure. I thought she was being sweet, but was underestimating me.

My specialist came in and shook my hand and asked me if I was ready to begin. I might have smiled and gave him an enthusiastic, "let's do this!" He then began pressing my hips and legs and butt, looking for the painful areas and marking them with a blue marker. This unsettled me slightly because there were so many spots, and it was a reminder of how much pain I carry. After the markings, he said we were going to begin by numbing the area. Taking small needles, he goes to work right away, placing them in all the spots he's marked, moving quickly. I watch the xray machine in front of me, seeing the needles go in, and noting all the bones I have recently learned in anatomy class. This process shakes me up a bit, because the numbing medicine hurts going into the trigger points. The trigger points are bad enough by themselves, so they don't take well to invading needles. After the numbing, we begin the actual treatment, of injecting medicine into the same spots to cause heavy inflammation, hopefully triggering natural growth factors in my body. And this point is where I lost my nerve. The marking and numbing takes around 5 minutes, leaving around 45- 50 minutes of injecting needles repeatedly into my body. It hurts. I cannot even describe the pain. I feel the numbing needles have done nothing because I feel everything. In reality, I know I could be feeling worse pain, but this thought doesn't cross my mind. A few injections in, he accidentally hits my sciatic nerve and my whole leg shakes in anger. I cried out in pain, and lost whatever confidence I had after that. The nurse silently brought over the stress balls, and I took them in each hand and squeezed. My mom watched, shifting between holding my hand, patting my head, and holding my gaze. I could not have done it without her. And I know it must have been the most difficult thing for her, to watch me in such incredible pain. I felt guilty that she was being strong for me, and I couldn't be the same for her. The treatment carries on, and I still attempt to hold it together. Sometimes sounds escape from me, which I have no control. I whimper a bit, but I refuse to cry, to lose it completely in front of this doctor. Because even though he is a wonderful and talented man, he is my enemy for that hour. I have no choice but to direct my anger and frustration to him. And I refuse to let him win and see me upset. Partway through, he is concerned and asks me if I need a break, need to cry, need to stop for the day and do the second half of my body at a different time. I spit back that I am fine and let's keep moving. I take a one minute break around halfway through the treatment, and try to focus on my breathing. The rest of the treatment drags on, and after an hour it is finally over. I feel a bit light-headed and cannot get up right away. Since so much anesthetic is used, this is a normal reaction. Slowly, the compassionate nurse and my mom help me up. The nurse tells me how brave I was and how very few people have to go through something that long and intense over so much of their body. I slowly shuffle to the room next door and lie down for a second. The doctor wants me to stay there until I feel less light-headed, but all I want to do is get out of there. I am going to lose control any minute, so I quickly tell my mom to help me get dressed and we exit the building immediately. She opens the car door for me, and helps me lie down in the back, and then sits down in the front and turns back to look at me. She is concerned and I want to tell her it's okay, but instead I tell her I'm sorry and then the floodgates break. I ask her to plug my ipod in and soon classical music drifts through the car. I cry and cry and cry. I cry out in pain, I cry for having to go through something so awful, I cry because I do not know when it will end, I cry because I wanted to be braver, I cry because it feels right and because I need to.

I get home and am carefully helped up to my room and lay in bed, icing the inflamed area. It hurts, but I am in not much more pain than I am used to on a daily basis. The worst is definitely over. My backside is covered up by gauze, and we check to make sure the sites are clean and not infected. It takes a few days before I feel better, and I carefully walk around and try not to sit. All the places where I was injected bruise, and my butt looks like a glorified black and blue pin cushion.

I don't know if it would have helped me to read an account of the treatment before I went, but I wanted to write this down in case anyone wanted to be better prepared. I wish I could say the second treatment two weeks ago was easier. This time I went with my dad, who is also a pillar of strength and support. I felt a bit more prepared this time, but I was still very anxious the night before and morning of. This time the doctor had me take Xanax for my nerves, but I did not like the affects. I don't like taking medicine to begin with because of my awful experiences with mood shifting in the past. I already don't have control over my body, I do not want to lose myself as well. I know how Beethoven must have felt. But I took it to try, but I think the affects were opposite what they should have been. I remember walking into the waiting area of the office and getting extremely anxious that the carpet wasn't vacuumed. I saw pieces of white fuzz everywhere, and back in the treatment room, I turned to my dad and told him I couldn't go through with it. I told him the carpet was filthy, and why couldn't they have cleaned it and maybe this place wasn't professional and maybe we were making a mistake, and why were we here in the first place?? He calmed me down and we worked on some breathing and then he tried to take me to a different place. "Picture going hiking with your friend," he said. "You're up in the mountains, the sun is shining, you're..." "Dad, stop," I barked back. "It's not working." I could not bring myself to leave that room. I don't need to talk about the treatment again, it went just like the last one, minus hitting the sciatic nerve. I know it affected my father deeply. I am so blessed to have such a strong family and group of friends who can support me. I don't know what I would have done without him in the room. I know it was hard for him. He had difficulty holding himself up during the treatment and had to leave the room for a few minutes to lie down. His blood pressure dropped from watching me in so much pain. I know he's embarrassed that he showed weakness, but it actually gave me even more strength. It validated the pain I was going through. Later, after the treatment was over, he turned to me in the car and told me in his short, but powerful way that he did not know many people who could go through what I did. We are going together to the next treatment in October, and I think we'll both do better. The doctor wants to try an injection before I begin for anxiety since the Xanax did not work. I told him I'd like to bring my speakers and play Beethoven during the hour. There are many things that can transcend the power of medicine.

One of the best things I have done since I last wrote is become more open about my feelings. Too often I turn in and tackle my dark moments alone, blocking everyone out. I have so many people who want to help, who want to be there. I find myself struggling in telling them how I really feel because I find it's a large burden. They constantly tell me it isn't, but I cannot help how I feel. Sometimes I feel so separated from everyone, and have almost an out-of-body experience. I'll be talking or hanging out with family or friends and what we're doing will seem so trivial and pointless. Or I'll get angry listening to someone talking about their "normal life." I know I've become bitter and I know that everyone has their own struggles in life. No one is normal and we all carry around baggage. I have found that when I reveal how I really feel to those around me, I feel much better. One time in particular last week, I broke down in front of a dear friend. I was originally going to lock myself in my room, lie in the dark listening to my music, and writing a post, but chose to be vulnerable instead. I was so relieved after sharing my fears, and felt stronger instantly. Another friend reminded me recently that I have so many people around me who want to help carry the weight. That it's okay to share it. I am learning so much about friendship.

I have pages and pages in my notebook of other things I want to say, but they will be for another time. I've included a link below of a translation of Freidrich Schiller's "To Joy" poem, written in 1785, that Beethoven so beautifully put to music in his 9th symphony. This is the poem in its entirety, only sections are sung in the chorale section.
http://raptusassociation.org/ode1785.html
There are so many good lines about overcoming the dark, and celebrating the light. Enjoy. And as always, keep fighting.

"Endure courageously, millions!
Endure for the better world."