Monday, May 31, 2010

How Many

Sometimes people ask me how many people follow this blog. I am able to see that at least 61 people do but frequently people tell me that they do but are not subscribed. I also don't know the difference between when people sign up for email alerts and when they are a follower of the blog.

If you understand the difference please let me know what it is.

Also, if you are not a follower but are reading it will you drop me a quick email to let me know so that I can more accurately answer people when they ask me.


Post Feminist Identity

Are we in the post-feminist era yet?

For the last few years I have been contemplating what being a man means to my friends who are men. What masculinity means. Especially in relation to post feminism, if we are in fact there. I find this subject fascinating. There is a class at the Rowe conference center that is on this very topic and I think it is only for men and I think I am not healthy enough to prioritize such a thing anyway but so interesting to me....

One of the things that friends have been reflecting to me in relation to how I have changed since this journey began is that I seem softer, smaller, more feminine. Recently this got me thinking... I have been looking to learn more about men and masculinity but when I turn the question towards myself in relation to woman and femininity I really don't have an answer. I feel what my friends are talking about. I feel my desire to embrace the softer side of me, the feminine. At the same time I have little idea what that means.....

Friends.... what does it mean to you to be a woman... to be feminine?

Do I Have To Feel LIke Shit To Feel Like Shit?

The last few days I have not been feeling very well. Its nothing compared to November that for sure. When I try to talk to Tom about it he frequently makes reference to how I dragged myself (sometimes he says I was carried in) into his office last year. Its true.... that was horrible. This is not horrible but I still feel bad. My plan is for it to not get horrible but it feel so on edge. I keep wanting Tom to have more to say. One time he will say vegas nerve right side, one time he will say blocked vessel, one time he will say sometimes it takes a while, one time he will say 6 new pancreatic cancer patients come yesterday. I know he cares and is concerned for my well being but damn.... I want the answer and I want it Why am I awake writing right now when I have a 7am appointment with Tom. Because I stayed in bed until noon today and now I am awake and my abdomen is hard and full and uncomfortable....

The times when I feel comfortable I do not take it for granted.... I do however tend to be so excited for my energy that I blow it all and then kind of crash the next day.

I am still thankful that I can get myself to the garden and water the plants, even though they look horrible in general. I am thankful that I can still get myself places even if it means driving. I am still thankful that I don't feel the way I did in November. I am still thankful to all of the people pouring energy towards me to help me. I am tired of this though.

Saturday, May 29, 2010

The magic

The magic is still happening, around me, including me. It is present a lot and I feel it a lot. That however doesn't make my acceptance of this path completely smooth. Last week was a hard week. I felt like my health was definitely one notch in the direction away from health and after about three or for days of this my mood could not stay positive. I felt doubt, despair, fear, and anger creeping in. I felt my imagination closing. Thoughts of fun in the future hid. On top of this my parents felt scared and thought that there was something I could give them to do to help ease their minds some. This was a struggle because one of the things they requested was more updates from me about how I was feeling. I specifically needed to focus less on the microcosm that is inside my body. I needed to analyze what was going on inside less to keep my sanity and spirits up. I needed my parents to focus on their pain and suffering and believe me when I told them that they were doing a lot for me, that I would tell them if there were changes in my health, that the best thing they could do for me was to take care of themselves, to face their fears and suffering. I felt resentful that my dad responded to my blog saying very clearly that he was not going to respect my desire to not have to talk about how I am doing as often. I felt resentful that my mom suggested that my not being as communicative as they would like was the cause of their imaginations going wild with all of the negative possibilities that could be going on. The last thing I needed was to have to take care of me and take care of them. So, once again I learned the lesson of boundary setting.

I have notoriously had trouble setting boundaries with people who I love. I think I may have also had trouble respecting boundaries from people who I loved. Both of these things are things I have been learning over the past few years but setting boundaries has become a really clear necessity in the last 9 months through this crazy-ass out of my control, what the fuck, why me, there must be easier ways to learn, thought it was over but here it is again, blessing of a really hard journey.

So after a few emails back and forth I did it. I set a strong and clear boundary. So far it has led to me feeling more connected with my mom. She seems to really be trying to look inward at her needs and to be reaching out to get support that will nurture her and help her grow. It is amazing how quickly an acceptance of my boundary eases my being enough that I feel more able to give the thing that the boundary was holding in the first place. Boundaries..... such great things much of the time.

I was fearing that I would not feel well for Jakes graduation. Fearing that yet another thing I had planned to do would come and go and my health would get in the way.... to my surprise I started feeling better and better once Sharon and Rachel got back from North Carolina and throughout the whole weekend. I am so happy that I was able to eat somewhat comfortably and to feel up for playing catch with the frisbee and balancing or trying to on Jennifer's slackline. I loved connecting with the family, loved getting more time with my cousins who over the past year or two I have been feeling more and more connection with. Sharon and Rachel and I stopped at Warren Falls on the way home. It was as beautiful as I remembered it even though it was not sunny by the time we got there. It also felt somehow healing to be alive to be in the place where I first started feeling the pain last August.

Lynne visited me at Sharon's house. I really enjoyed connecting with her. Really nice to see her so healthy and to be healthy enough to visit with her.

Been having some great connections with friends in Northampton area again, still.

So the magic is here and around me..... I wish that my liver was healing faster than it seems to be healing.

Two days ago I met a seemingly larger than life really fun man who is a friend of Lea's. We went out t eat with him. He is a great story teller and it worked perfectly for me because I wasn't feeling great or up for talking. Enormous black gay man with a lot of life history and fun interior design skills and a wonderfully soulful musician.

Yesterday I had a transformative guinea pig class with Hilary and Eleanor...I slept on he couch in Hilary's office while they broadcast on the internet. I woke up feeling physically and emotionally renewed. Then we spent about an hour and a half or more talking. I felt wonderfully blessed at the opportunity to spend time with two people who represent very different stages of life than where I am at and to feel a deep sense of shared appreciation and respect for the places in life where we each are at. Very healing for me.

Add to that some Monica magic and it was a great day yesterday.

Today Lea took me to the beach. It was nice. She joined me for some chi gong. I definitely understand why people like to practice chi gong on the beach. For some of the time I left my consciousness of body.

After the beach I didn't feel that well. I fele relaxed about it though because my story is that there was so much healing going on in my liver yesterday that today it is having to heal the holes left by disappearing tumors. As Nathan said to me earlier this year.... I would rather be happy than right. In this case I am going to hold that I feel happy and right.

Tuesday, May 18, 2010

Healing is a tricky thing

For the last few days I have not been feeling as well. Lower energy, more pressure in my abdomen, less fun to eat (although my appetite is still big). One of the hardest things about feeling a little worse is that it makes others more concerned.... then I am around that energy also which totally understandable but doesn't feel like where I want to be. Mostly I am able to stay in an observer role. Oh, look at that.... things don't feel as good. It is hard for me to have to explain the details of why it feels worse over and over. I tell my healers, then my parents want to know, then whoever else..... it is hard to just witness it when I feel pressure to be able to describe it..... healing takes time and is not linear. If I microanalyse each change I cannot see the larger picture. I wish it was enough to just say, I feel a little better or i feel a little worse.

I saw Tom today. I felt better afterwards..... before my treatment though he asked me if I want to learn something. I said yes even though I was actually feeling pretty shitty and wasn't sure I did want to learn.... well, I knew I wanted to learn, I just wished that I felt better physically while I was doing it. Turns out that I was able to pull my energy together and feel better.... Tom brought me into the a room where he was working on someone and told me to rub her neck where he showed me..... she was clearly in a lot of pain from it and I was barely touching her. I knew this feeling well. He asked if I could feel it.... I didn't know what I was supposed to be able to feel. He said it was like a bump..... i mostly felt a depression..... i told him that and he tried to show me again... I couldn't really feel anything or rather I didn't know what it would feel like if it was not blocked. His response..... more tai chi. A few things happened for me though.... one is that I realized just how lightly i needed to touch and just how painful it was for the woman. I remember that time well. It takes a lot more now to get that kind of response from me. Another is that it was hard for me to cause her so much pain and see her trying to hold back tears. Another is that I got super super hot, immediately perspiring, and I felt a lot better than I had when I walked in. Another interesting thing is that it turns out that the woman had pancreatic cancer and had found out about Tom via a coworker who passed on my moms information. Basically she was sitting there in Toms office because she heard about my story...... i felt a little awkward because there I was giving hope to this woman and her sister by virtue of being alive and looking good while my body is crying out again for some more healing. It was much easier when I felt completely healed to have people look to me for hope.

I feel somewhat better after the treatment. Some more energy. less focused on the pain.


Getting lots of energy my way again. It is very helpful.

If you respond to this blog and want it to be anonymous thats great. If you want me to know who you are please at least put a first name. I realize that out of context initials can be tricky, fun puzzle but I am not so good at it. Also if you are an anonymous user and want me to know who you are remember that it only tells me anonymous not who you are. Also, remember that you might share a name with someone else, so if you want to be sure that I know who you are something more than your first name might be necessary (although mostly I can figure it out from first name).

Thanks for the energy.....

Thursday, May 13, 2010

Do You Think You are Beautiful?

It has been an interesting road back to loving my body. There was a short period on the way down the weight scale where I enjoyed my body. Well, sort of.... take away the discomfort every time I ate and the fear that tumors were taking over my body and the depression etc.... I enjoyed when I weighed about 140. Clothing started to fit in a way I have not experienced for a long time.... not because I was wearing the wrong size but rather because my body was more like the kind of body that clothing is made for. I still had my hair which was still for some reason thick and shiny. I started to feel more flexible when I did yoga and I had not yet started hurting myself when my knees would touch or when I sat on a hard surface. Aside from all the shit that was going on, there was some part of me that noted that I always wanted to know what it was like to be a skinny person.... did clothing really fit better like it looks like it does, are certain movements easier.... the answer for me is yes..... things felt better, aside from all that felt worse. Then I got skinny, and greyish, and my hair started falling out... my ribs looked really weird.... in general things looked weird.... it was like my shoulders were too small for my ribcage. My butt disappeared. My mom told me I have Safta's butt, which she now denies but she did and I think that means a flat ass. It was weird to not have a butt. My cheeks were sunken in and my eyes bulged. No I did not feel beautiful.

Once I could eat again, I ate all the time and I knew that stabilizing my weight would be challenging. Funny, it seems that I would have just appreciated being alive.... but no, I really got to see the depth to which the self consciousness has its hold on me. I quickly grew out of size 4 (a size I cannot ever remember wearing even when I was not an adult yet) pretty much skipped size 6, left the great pare of jeans that I got from April (size 8), and got back to my normal, size 10.... only then even they were too tight on me. My hair was growing in but it was still patchy, the shape of my body was not a body I knew. Overall there was a lack of muscle but my abdomen was distended in a weird way. Instead of feeling alive and healthy I struggled with feeling heavy and weak.... no I didn't feel beautiful.

It wasn't until my hair started being long enough to do funky things, like the tamohawk (photo to come) that I could on occasion look in the mirror and think "I am beautiful" again. It was rare but at least it existed. I still struggled at that point though because I also realized that I had no style. I put clothes on and looked in the mirror and I thought "am I a boy or a girl." Where did that come from. My style had become commune chic over the last 9 years and well... not only did I not have those clothes with me, but mostly they are unreliable at this point.... i sure miss my black and white dress which at this point rips every time I wear it..... same dress I once wore to Dana and Eds wedding. Who am I..... A short while after I moved to Northampton and started bicycling places I regained a little muscle tone and lost a couple of pounds and my body shape was more or less back to normal, minus muscle. I noticed that frequently I would look in the mirror and be pleased by what I saw. I am enjoying that my hair has a slight wave to it....its not curly like I hoped but its pretty fun. I had just started feeling thankful for the return of my sense of satisfaction with myself when I spent some time with Daniel..... he asked "do you think you are beautiful?" The process of answering this question, of verbalizing the process, helped me seal the fact that I once again thought I was beautiful, that I was self accepting on the physical level, that I felt more like me again, that it is not about what others think but more importantly it is about what i think about myself.

Public Nature of this Blog

So for many months now I have been contemplating the public nature of this blog and how it affects my writing. When I first started the blog it was intended to both keep everyone who wants to be updated up to date but it also served as my journal. I felt deeply committed to writing freely without censoring myself for fear of hurting someones feelings of worrying what people would think of me. I got a lot of positive feedback on my writing and I think that the uncensored nature of it was part of what people liked. I think that part of the reason that I was so able to write that way is that I thought I was going to die. Why not share it all when it wont matter soon enough? It is not entirely the reason I could do it though. In general I do not feel that I have anything to hide. I love it when people read to me from their journals and I feel open about open in fact that this blog was my only journal about this journey until recently.

I have found myself becoming more self conscious about what I am writing. I recognize that there are things that involved other people and it is not for me to choose if I should out them. Or I neglect to write about someone who has been important in my journey and they feel bad or left out. Or I feel confused and find myself scared that if I write the full story about what is going on it becomes harder to change my mind as I get more clarity. Or recently I have felt like there are some things that feel more sacred and personal to me and I want to keep them to myself.

I feel stuck because I really value the uncensored writing that I was doing at first. It feels more true to me and who I am. It helps me accept myself even when I have judgements about my thoughts or behaviors. I feel scared of the repercussions of my writings because I do not think that I have the energy to work through misunderstandings or hurt feelings that might come of it.

Okay so here is an example of something that has been coming up for me that I have been avoiding writing in this venue. I have a lot of judgment on myself for feeling the way I am about to describe......

I have been feeling sad and disconnected from Dancing Rabbit, Sandhill, and Red Earth. When I got news of my livers newest antics, I wrote an email letting the communities know that I had some new challenging news. I got a few strongly supportive responses right away with a few more trickling over the next week. I feel very thankful for that. When I first got sick and for a long time I felt held by some individuals but also I felt very strongly held by the communities as a whole. I got constant reminders that people were thinking of me and sending me energy and missing me etc. This was super super helpful to my process. This time there was just not much response. I know that it is the busy season and that gardens, buildings, plans for the future, visitors, work exchangers, etc are full swing and that I have been gone for a long time now. I wish that I felt that same kind of strong supportive energy still coming from the place I call home. I wonder, is the news too shocking and painful to let in? are people really too busy to send a quick email? do people think my telepathy has gotten strong enough that I just know? is it obvious? do I seem calm enough and strong enough to go it without the support? do people feel upset because I never wrote the blog post that I meant to write about how helpful it was to have constant reminders that people are thinking of me and sending energy? do people feel helpless? have I been gone long enough that I am just not in peoples consciousness? have they moved on to the point that I don't have a place there?

I know that I am cared for and that I do still have a place at Dancing Rabbit. My strength in this knowing falters sometimes. I feel angry with myself that I wish I was getting something that I am not and not just being happy with what I am getting. I feel weak that I am not able to just know without reassurance that I matter. I feel scared about what this blog post might bring up for people. I wish I could just ask for what I want without making up so many potential stories.

Then there are things that I feel hesitant to write about because I feel shy. For example, I feel shy to tell you about the magical meetup with someone from my past. Maybe I feel shy because our first go at connection ended in me thinking that I was a poor judge of character and I really want to be an accurate judge of character.... okay not really I wish that I didn't judge character.... maybe it would be more accurate to say that I wish that I spent my energy in relationships that feed me and continue to feed me. Point is, when I was still in Northampton I went with Ashley (another sort of magical reconnection during my short time in Northampton) to see a strawbale house that was going up. Turns out that one of the balers was Daniel, someone I had met online in 2008. I had pretty much tried unsuccessfully to write him out of my consciousness because I felt hurt and frustrated when I had extended a trip to MA for passover to go visit him in VT. At the last minute he decided that he couldn't do it and didn't really have much explanation. This is one of my least favorite behaviors. It turned out that extended the trip was a great thing though because then I was in MA when Yochanan died and I could attend the funeral without having to turn around right after getting home to come back for it. Anyway..... after a brief moment of freaking out, heart pounding, what would I say to this person... I climbed the ladder and said hello. My fears almost instantly dissipated as we fell easily into conversation. We had the chance to spend a little time together before I left and I have been really enjoying our connection.

Why should I feel shy to write about this....? I don't know, it doesn't make that much sense given that I really really love connecting with people. I think it might be one of the most important things to me. Why shouldn't I celebrate when I have an easy connection with someone?

Another thing that I noticed over time in writing this blog is that at first I wrote in journal style.... I was really writing for me, to me. Now I am so conscious of my audience that I am writing to you. I even say, you?

I have come to accept that the blogging process is an evolution too..... just like the evolution of the cells in my liver.


I am finishing up my second week in Dorchester. I finally feel like I ma embracing this change to some degree. I can feel myself resisting because the idea of spending a summer in the city feels hard for me. I know that at Dancing Rabbit right now I would be able to hear things growing.... I am having trouble tuning in to that sounds here. Finally though I am getting excited about gardening. I think it is fun to explore small scale gardening. It has been a long time since I was working a garden that is small enough to stay on top of things. It is also an amazingly sunny spot so I think things will grow well and there is a lush lawn I can rest on when I need to rest, which is pretty frequently.

My living situation is great. I really enjoy Lea. She has been super sweet to me being present and available but gives me plenty of space. She has included me in things she does like putting bee boxes together, gardening, going to the beach, and going to an art opening. It feels really easy and comfortable.

On the healing front. Damn this is hard work. Its weird that it is hard work because most of the time I am just sitting there or lying down and getting treated. I am doing it every day in one way or another. I am starting to feel tired of the pain that happens during the treatment. It still always feels good afterwards but breathing through the pain is getting harder. I feel myself wanting to cry instead of breathe through it, wanting to tell them to stop. I am just tired of it but I think it is helping me. So far it seems like there is an energetic shift, I no longer feel that my liver is encased in a bullet proof and energy proof shell. I do not think that the tumors have started shrinking yet. I would really like for them to get smaller..... I know that even if they get just a little smaller I will feel better. It is not that I feel too terrible right now. I have limited energy, eating doesn't feel that good but my appetite still outweighs the discomfort, digestion is moving, urine seems to be lightening in color and texture...... I think that things are going well....

Today I started feeling a little bit of despair...nothing compared to where I was in the fall and winter.... about how to know when i am healed, what that means, and how to regain my feeling of freedom to move around and be where i want to be. Once the tumors go, how to I keep it that way?Do I have to live in the city to do it? Will I learn to love city living?