The Holistic Trinity

It’s been two years since my last injection. This blasphemous behavior makes me a little embarrassed and nervous to see the man who prescribes the medicine. I’m in a small room—waiting—surrounded by images on the wall of the human body splayed open to reveal the central nervous system.

To pass the time, and also to remain calm, I practice yoga. The yoga also gives me a feel of control—right before the god-like figure is going to come into my life again and review my history. He seems to be a good neurologist with a steady following, but I’ve met people in my Yoga for MS class that really say great things about their own Neuro. Another doctor might be more interested in alternative approaches to controling MS. I’m thinking of converting.

My Neuro enters the room and asks the same questions and performs the same physical tests that he does for all his MS patients. “Any new disability?”. He checks my reflexes, watches me walk down the hall, looks at my pupils. He’ll review my history, make some small talk, and tell me that I really should be on Copaxon or Gilenya. He bases this recommendation on the fact that in my MRI he can see two small black pin holes in the grey matter of my brain; noting that this demylenation could lead to disability.

As he talks it over with me, I sense that I’m becoming anxious and so I begin to focus on my breath. But I already know that I won’t go back to the medicine. I will continue to focus on yoga, diet, and meditation.  If I mention these wellness tactics to the Neuro he’ll  apatheticaly say , “good, keep it up.”

He releases me to the receptionist desk to schedule a new appointment. As I walk down the hall, I take a moment to reaffirm my faith in the holistic trinity—yoga, diet, and meditation.

still life

My friend Heather and I decided to sell our art on the sidewalk in front of the Metropolitan Museum of Art. We each made a series of small, simple fruit paintings.

Arriving in Manhatten on a hot July morning,  we unbagged our art and set up along with many other street artists.

To our surprise it was also the same day as the German- American parade. The parade began that morning and passed by only a few feet away.

With all the last minute organizing of the artwork—displays and snacks— I had forgotten my wallet. I was in the middle of NYC with no debit card or cash for the day. I had just my artwork, a few granola bars and a bottle of water. But with Heather there I knew I’d be ok. She’d help me for the day if I needed anything.

Heather rarely eats when she works. She told me that she sometimes works for 5-6 hours without a bite. She never eats at restaurants either.  She bravely travels the world, runs her own art school, does not pamper herself in any way typical to the American woman. And as physically strong as she is, she is also a deeply kind, and warm person. A great person to share my time with.

Along with her paintings, Heather brought an old fabric bag.  Inside the bag she kept her own provisions for the day and that she would share. She described an assortment of light snacks including some plums.

We discussed ththe heat and the distraction of the parade. We also agreed that we should finish our day in front of the musuem by about 2. As the day wore on we found that the German-American parade that passed by  was the center of attention. Heather and I, as well as all the museum goers where amazed at the rich culture that was exhibited. An abundance of food, loud music, vibrant dance and lavish costumes rumbling past.

It was about 90 degrees. So we took turns sitting in the shade away from our make-shift cardboard kiosk. There, I ate my granola bars that had I brought with me. After a few of those breaks in the shade of the museum wall I was out of food.

It became apprent that our spartan, miniature paintings of fruit didn’t have much appeal for the out-of-towners strolling by. Other vendors were doing pretty well selling souvenir-style, glitzy pictures of the NYC skyline.

I began to get quite hungry, but Heather was confident that we should hold out for another hour. “If we don’t make a sale, she said, “then we’ll pack up our art for the day.”
The last food item we had left were the plums. I politely asked if I could have one, but Heather had a great idea. After we finally packed up, we could enjoy the plums even more if we hiked into central park to eat them.

The hour passed by, and the colorful parade continued, but not even one nibble of interest for our paintings. Heather and I were slightly disappointed, but mostly happy that we had this experience of being New York City street vendors.  We packed our art and kiosk and found our way into central park.

With my stomach empty and my head hot from the sun, we found a shady lawn and began practicing a few minutes of yoga. After a little while I took the last swig of water and suggested that we eat the plums from the bag.

Advertourous as she is, Heather then remembered that she once found a great hill top in central park that would provide the perfect view while we relaxed and ate the plums. She grabbed her bag by the handles and we started the rest of the hike deeper into central park. With me dragging behind, she cheerfully noted that the plums were asian plums and really quite good.

My own bag  became heavier with each step, and my hunger stronger. I had never hiked through central park before and I was surprised at how expansive it was. Deeper into the woods I told Heather that I was really thirsty, and suggested that maybe we could turn back and find a store for some food and water. No need for that though because she said she had hand picked these asian plums herself and they are really so juicy.

We eventually climbed a steep rocky incline off the main path. I was trembling from the hunger and heat. We found a perfect clearing to sit down and she was right about the view. With my gear off my back I rested. I laid back in the overgrown grass and listened as Heather reached into her bag elbow deep.  She searched and then shrugged and said “I forgot the plums”.  I slowly exhaled and said  “that’s ok”.

people

Peter never seems satisfied and is always searching for his dream job. He’s always coming up with ways to make alot of money without working very hard. The cubicle just isn’t for him. He knows he is much more creative than this.

Betty has never married and lives alone in the city. She sends buddhist quotes to her co-workers each day, but she seems to be suffering deeply with discontent and disbelief with how other people behave.

Tina’s mother was so depressed and angry. She pushed Tina’s father out of the house and out of there lives. She really didn’t get the chance to know him until she was 18 when she could drive to him. Then he died of colon cancer just when she was getting to know how great he was.

Lack of love when Al was a child left him feeling insignificant and with poor self-esteem.
He grew up to make other people feel insignificant and stole there self-esteem so that he could feel better about himself.

Kimberley endures the abuse and keeps up the charade of a happy home. She shields the kids from him and provides enough love. They all are relieved when he leaves the house each day and are nervous again when he returns.

In 2010, Rosemary admits that she is very bitter about her divorce. It has given her a lot of anger and frustration that she’s been trying to work through. She warns people of her anger issues and says her divorce was in 1973.

especially enhanced moments

Kathy Symanski started dying when she was only 53 years old.
All her life before that age she spent surrounded by her family and friends. She had many especially enhanced moments.

And there where so many of those especially enhanced moments. Each one of them wrapped in crisp white paper with ammonia additives that freed the nicotine into her inhaled smoke.

It’s another especially enhanced moment on the patio, or sitting in traffic while listening to music. Painful and sad times were enhanced. Good times were enhanced. The mundane times were enhanced. Her chemo days, shuffling in her slippers to the nearest hospital bench were even especially enhanced.

Here family and friends finally gathered around her. They wished Kathy could have had less especially enhanced moments and more regular moments to enjoy the rest of her life with them.

legos and buddhism

After cooking in my kitchen for about an hour, I decided to visit my son and lie down on my yoga mat which had become a lego construction site.

He was busily creating robots and buildings. I started to make some encouraging comments and ask some questions about his creations. I saw a tower that he’d built. I said “that tower is really good.” He said, “no it’s bad”.

I immediately became a little tense and questioned him about why he was being so negative. I went into my own age-appropriate sermon on ‘the power of positive thinking.’

Then I finally paused to breath and he said, “No Dad. The tower is bad because it’s for prisoners.”

Hmmm? I apologized and we laughed at my hasty remarks.

There must be a buddhist lesson built into this. It wasn’t obvious until the next day. Discussing this funny story with a good dharma buddy, he reminded me that I had attached an entire history to that little incident. I projected fears and tried to correct my sons behavior as soon as it occurred. But I wasn’t seeing. I wasn’t being patient. I wasn’t present. My robotic habit of acting on old experiences and projecting them into the situation had arisen.

city blocks

Walking fast to my car. As fast as I can. I probably already have a ticket. I have 3 minutes to walk what  takes about 6 minutes at my normal gait. But I must beat the “meter guy”. I really do not want another ticket.

I realize that I am tense. My belly tight and my hands in fists. My thoughts  are negative and rapidly jumping from topic to topic. I keep coming back to “will I make it”.

Wait a second. Why can’t I walk fast but be relaxed and positive. I still can beat the “meter guy”. I begin to witness my thoughts instead of being consumed by them. Within a few paces I realize how silly this is. I pay attention to my legs. Yes they are moving fast. Just what I want them to do. But now I am realizing what they are doing. And appreciating that I even have legs and feet that work so well. I’ll keep them moving like this. Now I bring my attention to my belly. It’s easy to relax the belly now that I am aware of the tension there.  A tight belly doesn’t get me to my car faster. It only makes me uncomfortable and is the manifestation of nervousness. I soften the area.

I’m now in tune with my good legs, and my relaxed torso. My mind is now appreciating the act of walking and my breath is smooth and long. The walk becomes meditation.

As I turn the corner I see my car. There is no “meter guy”. There is no ticket. Just as i thought.

The Pill has Arrived_

Potentially…
no more injections or cotton pads, or packing needles for trips, or sight-injection pain, etc. etc. I have not tried it as I have been off any medication for about a year. But nice to know that If I have to get back to artificially supressing my immune system, the pill is there. Thanks Novartis. Below is some info i found out about. The side effects are there of course. I rather be dizzy and have full use of my limbs though.
If anyone out there is using Gilenya please let me know how it is going. –Dan

On September 22, 2010, fingolimod became the first oral disease modifying drug approved by the Food and Drug Administration as Gilenya[9] to reduce relapses and delay disability progression in patients with relapsing forms of multiple sclerosis.[10]

Fingolimod (rINN, codenamed FTY720) is an immunosuppressive drug. It is derived from the myriocin (ISP-1) metabolite of the fungus Isaria sinclairii. It is a structural analogue of sphingosine and gets phosphorylated by sphingosine kinases in the cell (most importantly sphingosine kinase 2).[1][2][3] The molecular biology of phospho-fingolimod is thought to lie in its activity at one of the five sphingosine-1-phosphate receptors, S1PR1[4]. It can sequester lymphocytes in lymph nodes, preventing them from moving to the central nervous system for auto-immune responses in multiple sclerosis and was originally proposed as a anti-rejection medication indicated post-transplantation. It has been reported to stimulate the repair process of glial cells and precursor cells after injury.[5] Fingolimod has also been reported to be a cannabinoid receptor antagonist[6], a cPLA2 inhibitor [7] and a ceramide synthase inhibitor[8].

before MS/after MS – a typical day

before: I drank coffee all day long everyday. 4 to 6 beers on the weekend. maybe a bottle of wine. held my breath and didn’t breathe properly all day at work. lots and lots of cured meat. donuts and cake all the time. mean-spirited sarcasm. played soccer all weekend without properly warming up before games. i was self-employed and ran an advertising agency. struggled to employ 10 people with healthcare. saturated with negative thinking. artistically drawn toward gritty urban decay as subject matter. I created mixed media paintings using oil paint, collage, turpentine and other toxic mediums. smoked  cigars. argued alot. refinished the floors in my house using polyurethane. trip to the butcher and the bakery to stock up. 6 big chocolate cookies and milk before bed. late night TV. back out to the painting studio to see if the glue or paint dried…

after: I work for someone else. eat lots of steamed vegetables and rice. practice and teach yoga. am mindful of my speech and actions as not to harm anyone. draw the human figure while integrating yogic breath techniques. watch kids movies with my son. meditate. fall asleep at about 9. try to always be positive. sleep and read on the train. look for people that I can help. drink herbal tea.

I was accused of being “positive”.

You never know when the benefits of yoga will surface.
One of my goals has been to lessen the amount of my negativity. It appears as though I’ve made some progress. It hasn’t been easy. I needed to purge the mean-spirited sarcasm from my system, as well as other unhealthy behaviors. I used to spend lots of time crafting stories about tragic events that “could only happen to me”. Telling lies in the form of gross exaggeration was another of my past traits– a gift from my father. And my habit of making fun of people for my own amusement– yes, even the handicapped. There was much more.

So after years of self-study in yoga and buddhism, a glimmer of success arrived in my cubicle. A co-worker, in front of other co-workers, pointed out that she likes working with me because I’m “always positive”.

That felt good. So good it’s a blog entry.

a list of things I can do: as of Sept 30th, 2010

I can put on my socks, move my legs and toes,
smell coffee, create art, talk on my cell phone,
see my sister’s babies, earn a paycheck, enjoy music,
appreciate cold rainy days, love my girlfriend, bundle my son up in a quilt and lift him up into his bunk bed, apologize endlessly, be in yoga, sleep really well on cool stormy nights with the windows open, remember to breath, eat ice pops and watch the discovery channel with Luke, run as fast as I can playing sharks and minnows with the elementary school kids, appreciate standing on a crowded train home, make halloween decorations, appreciate everything about Aimee, put on my favorite flannel shirt, help my son get in and out of the shower, tuck him in, load the dishwasher, admit that I’m addicted to pizza, sketch people in the book store, buy Warren a corn muffin with butter and jelly on the corner of 30th and Market at 8am, close my eyes and relax my face, fall asleep in a leather chair in the middle of the mall, balance on a fallen tree, watch Ice Age the Meltdown for the 10th time and still laugh, remember the Hail Mary, enjoy the scent of you on your side of the bed after you’ve left, make mashed potatoes with rice milk, do 59 push-ups, talk to my mother, meditate before bed, become sleepy,