Tag: friends

A point of clarification, or becoming the little brother

It has come to my attention that some of my less-than-careful posting about ex gf’s has made me look like a typical dude who can’t take care of his own shit, and needs a woman to take care of him.  It was put to me in more delicate, and less annoyingly heteronormative terms.

The posts in question are here and here.  It would take way too long, so I’m not going to try to defend or explain.  I will say that they are stories completely without a context.  And that in most all relationships I have been in, I am always the caretaker.  I will admit to a mamma’s-boy binge here and there (going back to Portland for the Interferon and being taken care of,) but I am so much more my mother, than a mamma’s boy.  I am a total Jewish Mother, feeding, and caring for, and supporting, and making sure people go to the doctor, and nagging them when they don’t. I specialize in force feedings, nagging and guilt trips.

And by force feedings, I mean the kind where someone is coming off of food poisoning, or a really bad night out, and has not drank water for a while, and has not eaten for even longer.  I am a specialist at coaxing them into drinking some water, then switching to juice, and then to a smoothie, and then to toast, and then my job is done.  Don’t ask why I have such experience at this.  Again, the story would take way to long.  Let’s just say something vague like “past experience” or “history” or “my mother taught me well.”

So one of the most interesting challenges of the last *six months* (!) has been learning how to accept help, and ask for help.

I have always been a Jewish Mother of a big brother.  Well, not always.  For a while we fought terribly – I was an expert in verbal taunting, and I was still bigger and stronger than him.  I am no longer bigger and stronger *and* he practices Taekwondo, though I am probably still a better verbal taunter, though he is a very very close second.  After I left Middle School and grew out of that phase, I have always looked after my brother in one form or another.  For a while it was a burden my parents gave me.  Or rather, they begged me to take on.  Because he pretty much refused to listen to them for a while there.  I resisted for a while, and then it was just the way it was.  We both gave in to our parents’ wills. School help, life help, help dealing with our parents, etc.  I have even (and repeatedly) offered to make an appointment and pay for a proper hair cut; each time he turns me down.

The amazing thing about the last six months is that I have become the little brother.  My brother is taking care of me, taking me to drs appointments, telling me what to do, bossing me around, nagging me about things I need to take care of.  He is the dominant personality in a conversation, or situation more often than he would have been in the past.  And he is doing the grocery shopping.

When we were all home, there were moments when x and KM and LK and P could glimpse moments of my childhood.  In the way my dad showed them around the woodshop in the garage, or the way we would interact around the dinner table, or whatever.  One time S and I and my Dad were debating something; I forget the details, but Stephen was coming out on top and was teasing me about it.  So x called one out, saying “I just caught a vision of your childhood.”  I told her “Yes, but in the version from our childhood, I was S and S was me.”

And now he is leaving.  Leaving for the west coast to start a PhD.  I will miss him.  A lot.

Saying “I Love You”

Since the diagnosis i feel like i have an increased capacity to love people, and for people to love me.  or, put another way, i’m more likely to tell people i love them, and they to tell me.  people whom i very close to (but never said it), but also people whom this ordeal brought me closer to.

I don’t think it is the fear that i might not get the chance to say it b/c i might die, but rather that the possibility that i may die spurs me to do things I really wanted to do anyway.  its not that the diagnosis has me backed into a corner, but rather that it has become an opportunity to take advantage of.

I guess I became much more comfortable with the idea of loving platonically in the last few years.  I’m not sure when it happened, but it did.  I became much more comfortable with saying it, even to my parents.  I mean, of course, I love my parents, but I think that in the last few years something changed about the way I related to the phrase that allowed me to really mean it.  Or to recognize that emotion as love, though a different kind of love than romantic love.

So I got more used to saying it, and the idea of it.

Correspondingly, my cancer caused my friends to tell me they loved me.  I could speculate on causes: that it was the fear that I might die and they might never be able to tell me, or that the *realness* of the cancer allowed them to break out of their fear, or soomething else equally speculative.  But I will simply say that it has happened, and it is comforting.

Feeling like crap

My mouth sores are mostly gone, but now I can’t swallow without pain on my left side of my throat.  I called the Dr, and these are not conventional side effects from the IFN. I was told to treat it like a cold, and if it is not gone in a couple of days, to call back for an appointment.

I’m queasy.  I’m wearing my ice vest inside my appartment with the A/C on.  I need to eat more food.  And I have to shoot up tonight.

I remember what AW said to me at one point:  “You will have good days, and you will have bad days.  And you just have to accept that somedays the best you can do is to lie in bed and cry.”  We’ll I haven’t cried yet today, though maybe that would be a satisfying release.  I think I’ll go eat some watermelon instead.  And then lie in bed.

The Compassion of Others

Today I have mouth sores. I did a quick search, and it is a little mentioned but documented side effect of the Interferon. Kind of like my mouth is raw in lots of parts.  Or like I burnt it on some really hot pizza, except not just the roof of my mouth.  Like ulcers, or gum disease or something. It hurts to eat food. I noticed it last night, and started using a mouthwash, which hasn’t helped. The interwebs say that there are some scary sounding iodine rinses, or you can just try warm salty water. Though neither work that well.  I’ll go for the salty water.

But it makes is really hard to eat. It hurts to have anything in contact with those areas. Especially hard or rough things. So when i got my sandwich today at the sandwich shop I go to nearly every day, I asked them to cut the crust off of the bread. I was bashful (if not ashamed) of having to make such a strange request. I mumbled something about having sores in my mouth, and chemotherapy. The two women who work the register know me well, and while they don’t adore me per se, I sense a fondness from them. They always remember that I don’t want a bag for my sandwich, and they love that I sometimes order one sandhich and 3 or 4 cookies (for my assistants!)  I guess I’m a regular. So they smiled, maybe not really understanding what I mumbled but not caring, and told the guys making the sandwiches what I wanted, they all laughed. Not a mean laugh, but a hearty “never a dull moment” laugh. I said “at least I made them laugh.” In the last six months I have realized how important making people laugh is to me.

On my way out of the store the man who ordered after me, but got his sandwich before me (because they didn’t have to cut the crust off!) held the door open for me. As I reached to take the door from him and walk through the threshold he said, “I hope you feel better.” I had not paid him any attention, but he heard enough to know that something was wrong. He might have heard me say “chemotherapy” or “mouth sores” or maybe he just knew of the feeling of needing the crust cut from your bread.

sandwich without crust

My sandwich shop, like my studio, is in Chelsea. Chelsea is many things, but one of them is a neighborhood of men who have survived. Men who have seen their friends and lovers die. And men who understand the toxic side effects of therapeutic drugs. It was so comforting to have that anonymous man offer me his support. To keep the door open with his hand, and offer me his words. It was comforting, but it also made me cry. I guess I’m used to crying on the street at this point

His brief comment was an act of recognition. He was saying “I know you. Know that I know you. Know that you are known and noticed for the pain and suffering you must be going through.” Obviously he didn’t say that, but that is what those words meant in that context.

I have been really honored to have friends and colleagues and mentors and peers who have come out and told me their own stories of illness. Stories I did not know before. Cancer, HIV, immunodeficiencies, epilepsy, etc. When you are publicly sick, people offer their hand.

A number of the “How to Survive Cancer” books and websites and pamphlets that I have read are big on having you *not* allow people to tell you the stories of their great aunt melba who had x or y cancer. They counsel you to say “I’m very sorry about your great aunt melba, but each case is different and I am trying to remain positive about my treatment and outcomes.” They are especially aggressive about that if great aunt melba died.

While I have had to pull that line a few times when it became clear aunt melba was dead or dying, the vast majority of times people have told me about their own health struggles it has been comforting.  It is like being welcomed into a world of other people like me that was existing in front of me, I just wasn’t able to or allowed to see it.  It is comforting to know that there are other friends of mine out there who are surviving their own battles with their own physical challenges.  It is comforting to know that I am not alone.

This post is for BB, HW, AW, BH, JW, SD, JC, CQ, EM, VT, LP, JG, KW, MH, IV, FG

Day 16 with the Oracle of Not Doing

Infusion was uneventful. Passed my blood test.  Got the drugs.  No major side effects.

I was pretty stressed yesterday and this morning.  I got really anxious before Monday treatments because the side effects start again IF my liver function is within a normal range.  I was really nervous my liver would be working too hard and I would not be given the drugs — I have a plane ticket out of here on Saturday morning, and now I know that I am going to be on that plane.  Nice.

Today I spent the morning with LK.  She has been here since Thursday, and took part in the EPIC pizza party and hike.  Today was a little bit of solo time with her.  I met her cousin, and she told me stories about her family.

Early on in my diagnosis I spoke to LK on the phone for a long time.  She kept saying “so M, you realize you are really going to have to change how much you can do, and you are going to have to say no, and not do things.”  And I said something like “yes, yes, just after I finish this next project” or something like that.  And she repeated herself a little more insistently.  And then she offered to say no for me.

The deal was I would either email her to ask if I could do something, and she would tell me “No.”  Or I would simply know that she would say no, and say no myself and then tell her.  So here is our email exchange.  She became The Oracle, and I became the Supplicant.  NOTE: This was all written before the positive result from the lymph node surgery and the second major surgery.

Dear supplicant,

The Oracle accepts your energetic shifts regarding your grant, your now-ex, and your mother, but she wonders about your priorities, given your decisions about how to compose this e-mail. The Oracle would appreciate less self-reflexivity in your tone, because really, she already knows.

When it comes to mothers, there are no mistakes.

Perhaps your mother would like to sew you something to protect your calf from new york city, brooklyn, car insurance, and other contributing factors. It could also have reflective tape, and maybe a family photo tucked inside. The Oracle senses that your mother might not be sure how the pinstripe suit will help you with your skin cancer. Is the fabric supposed to shield you from the sun while you are riding your bicycle? Are you going to grow your sideburns long and buy a big black hat?

The Oracle is considering visiting Portland at Christmas. Would the supplicant join her on this path? The Oracle likes your parents, and is nearly envious of their ability to engage intellectually with a variety of topics.  Oracles cannot, of course, be envious, but if they could be, she would be. The Oracle is also curious about their house and how the kitchen looks now. Although I sense its quiet, pulsing perfection, the tactile reality of opening the fridge would give the Oracle great pleasure.

The Oracle doesn’t really care if you apply for that grant, because many of her fellow priestesses are approaching 50 years old and have applied for that grant for the first time. The Oracle considers SL to be very Wise in his proclamation that there will be time for things like this later. The Oracle will make psychic contact with SL and invite him to join the circle of healing currently in place, held together by an infinite number of people and animals, most of whom you do not know, all of whom wish only for wholeness, smooth scars, and neat incisions.

The Oracle loves you. Take five deep breaths, shut your eyes, and imagine your parents’ refrigerator. Then imagine opening the fridge and being one with its bright, shiny light, sinking into its sterile, nurturing shelves and merging with the salad greens until you feel washed, spun, crisp, and good enough for your mom to present in her favorite bowl.

yours in bliss

LK

On Mar 8, 2008, at 8:09 PM, m wrote:

> Dear Oracle,
>
> I have forgotten many of the things i have not done.
>
> You could say this was a good thing: to forget the things which you decline.  Mostly it was because I am strongly remembering three things I decided not to do, two of which were hard but good to do, and struck hard at my spirit, and the last of which was something I should not have said no to.
>
> I did not apply for a big grant.
>
> This made me feel like my illness and my resolutions surrounding it were finally, actually impacting on my so-called life.  The fact of the matter is that my CV is not my life.  I know, oh Oracle, that I must repeat this many times.  Also, another fact of the matter is those things are such crapshoots, though I do feel like I had a better shot than in previous years, and supposedly getting into final rounds is good just by itself and often leads to other invitations.  Yet another fact of the matter was that I didn’t really have a project that would work for them anyway.  SL reminded me that we aim for long so-called careers, and will be around and alive for the next round in three years.
>
> I did not succumb to the relationship-games started by the woman I was dating
>
> Which is to say: we broke up. She started a fight over my defining boundaries.   I insisted that my boundaries were important.  She said that it was not okay with her the way I was “distanced.” I think she was bluffing, and wanted me to give in to her and come running back.   She thought that I was going to say ‘all right, for you, just this once’ or something.  But i did not.  This caused her to cry and cry.  This was exhausting.
>
> This is overly simplified, as the Oracle does not need the details, but rather the universal truths.  The only detail the Oracle might need to know was that the fight she started was over whether I should sort through her automobile registration and insurance papers to make sure they were in order.  She made it sound like she had spent most of her time ruminating over this seemingly insignificant detail since it had happened five days earlier.  Needless to say, it was an inappropriate request to make of someone you have been dating for a couple of months on weekends.  And so I said no.  And then when she started relationship-games, I also said no.
>
> I also said no to my my mothers repeated requests to help-me-out-in-my-time-of-need.  This was a mistake.
>
> I repeatedly explained to her that there was nothing she could do.  She could not fly here and come take care of me; it would just be more difficult for me, as I would feel compelled to take care of her and she would get in the way of my daily life, which has to continue in some form or another.  I turned down her request to send me money to pay for… take out food… cab rides… etc.  I told her I would take more cabs, and that I could pay for it.  I told her that take out makes me feel like shit.  This is true.  She just got more anxious.  So today I told my mother she could help in whatever way she wanted.
>
> But Oracle, I arrived at an even better way for my mother to feel like she is involved with me and helping-me-out-in-my-time-of-need.  I invited her to make a project with me.  I want to make a pinstripe suit with reflective stripes.  She sews. She is going to do some looking and talking to people. I made a wiki page for the project, made her an account, and invited her to post her research the wiki.  Nevermind that in a spurt of research after I got off the phone, I found someone in the UK who has done it, and patented his process. It is the process of sharing with her that matters, right?
>
> your supplicant
>
> m
>
>
>
> On Mar 6, 2008, at 2:28 PM, LK wrote:
>
>> hon, the oracle has been so slack. I’m sorry. look for her feedback soon!
>>
>>
>>
>>
>>
>> On Mar 1, 2008 at 1:02 PM, m wrote:
>>
>>>
>>> Dear Oracle,
>>>
>>> This week i had to do things I had previously said yes to, and could not say no to.
>>>
>>> The planets were already spinning.
>>>
>>> When my wounds heal, I will pretend to join a gym so I can use their sauna.
>>>
>>> I will perform the breathing exercise as soon as my cleaning lady leaves.
>>>
>>> This week I asked for help.
>>>
>>> I asked someone to come clean my apartment (and paid them).
>>>
>>> I asked someone to rub my back (and paid them).
>>>
>>> I asked someone to rub my body and touch me gently (I did not pay them, they are my regular intimate)
>>>
>>> I asked several people to spend time with me, for lunch, for dinner, just to be in the same space
>>>
>>> I asked several people to accompany me to my doctor’s appointments, and wait for me until they were over.
>>>
>>> I asked my friends to send me funny things from the Internet because laughing makes me feel good.
>>>
>>> I did say no
>>>
>>> I said no to someone else’s intern who wanted me to hold their hand through a software installation
>>>
>>> I said no to three people who wanted help building websites
>>>
>>> I said no to a meeting I did not have to be at
>>>
>>> your learning supplicant,
>>>
>>> m
>>>
>>>
>>>
>>>
>>>
>>>
>>>
>>> On Mar 1, 2008, at 2:12 AM, LK wrote:
>>>
>>>> Dear Supplicant,
>>>>
>>>> The oracle requests that you perform two exercises. One involves breathing through your nose one nostril at a time. Hold the other one shut. breathe in, change nostrils, then breath out and in again. Change.
>>>>
>>>> The other involves locating a sauna in your neighborhood and sitting in it. You might have to pretend to join a gym. It’s probably better if you wait for your leg wound to heal somewhat first. The oracle has heard good things about this place, which while not quite in your neighborhood, feels like a resonant harmony with your current state: http://www.russianturkishbaths.com/enter.html
>>>>
>>>> “being early” is an intense space to occupy. Be very careful. Be sure to look at a wide variety of colors, especially blues and purples, whenever you’re early.
>>>>
>>>> yours in bliss,
>>>>
>>>> LK
>>>>
>>>>
>>>>
>>>> On Feb 25, 2008, at 7:47 PM, m wrote:
>>>>
>>>>> Dear Oracle,
>>>>>
>>>>> I pull at my spinning planets to slow them down:
>>>>>
>>>>> Today I informed a colleague that I would not be able to be a guest lecturer in her class, as previously arranged.
>>>>>
>>>>> Today I told a client I had a health issue and would not be able to deal with their website issues at my usual speed.  (And then delegated it to my assistant.)
>>>>>
>>>>> Today I am going to be early.
>>>>>
>>>>> in supplication and heavy-yoga-breathing
>>>>>
>>>>> m
>>>>>
>>>>>
>>>>> On Feb 25, 2008, at 10:41 PM, LK wrote:
>>>>>
>>>>>> Dear Supplicant,
>>>>>>
>>>>>> The oracle requests that you send data re future activities so that she might better channel your unresolved energies.
>>>>>>
>>>>>> Presenting successful resolutions to the oracle only effects currently spinning planets at their current spin rate.
>>>>>>
>>>>>> Continue with the prostrations, as directed.
>>>>>>
>>>>>> Yours in bliss,
>>>>>>
>>>>>> LK
>>>>>>
>>>>>> On Feb 24, 2008, at 4:53 PM, m wrote:
>>>>>>
>>>>>>> Oh Guru of Calm,
>>>>>>>
>>>>>>> Oh High Priestess of Doing-Nothing-Ness
>>>>>>>
>>>>>>> I report these things which I am not doing:
>>>>>>>
>>>>>>> I did not go to the big event at the studio on Saturday, even though everyone else was there.
>>>>>>>
>>>>>>> I am not doing the alumni interview.  I contacted the Alumni chair, and told him i had an emergency and could not do it.  His problem now.
>>>>>>>
>>>>>>> I am not going in to school for the applicants job talk on tuesday.  Emailed in, and told them I had a medical procedure on monday.
>>>>>>>
>>>>>>> I am not going in to the studio on Tuesday, even though I dont have to go in to school.
>>>>>>>
>>>>>>> I turned down an interview for a exhibition catalogue. They can reprint something i already did. Or not. That is enough.
>>>>>>>
>>>>>>> Your supplicant initiate
>>>>>>>
>>>>>>> m
>>>>>>
>>>>>>
>>>>>>
>>>>>>
>>>>>>
>>>>>
>>>>
>>>>
>>>>
>>>>
>>>>
>>>
>>
>

Reiki & Anticipation

A famly friend was over, with her whole family (dog included.)  Her new sister in law is a Reiki practitioner.  (I think I mentioned the wedding a few weeks ago)  So she did some work on me.  A lot of it was similar to what my massage person has done.  Certain ways of holding and touching the feet and ankles, holding & rubbing the belly.  By the time she was done, I was so deeply relaxed I fell asleep for 3 hours.

I guess the idea is that the chi is blocked and the Reiki helps unblock the chi.  So it leads to a quickening of the healing process.  I don’t know whether it was just psychosomatic, but I was very relaxed from it.  Its hard to say.

Not so relaxed now, though.  Sunday night is such an emotionally turbulent time for me.  Tomorrow I will hopefully start the final week of the treatment.  I hope I clear the liver test.  I haven’t taken any Tylenol for two weeks, so that is not a factor.  I feel pretty good; I mean *right now* I have a pit in my stomach and have been crying off and on, but before I started thinking about the blood tests tomorrow, I was felling pretty good.

N.B. I noticed that I had a montly archive on the side of the blog.  It shocked me to realize that I had been here for so long. It has been five weeks, going on the sixth.

Somehow Saturdays are so hard

I don’t quite understand, but Saturdays are the hardest day of the week.  I make it through a whole week of infusions with high energy and good spirits, and then Saturday I crash hard.  Same as the previous weeks.  I sleep in way too late.  Have no energy.  Cry for no reason.  Can’t eat.  No fun.

Today the plan was to go to the beach.  Really, it was my brother’s plan.  To take KM to the Oregon coast, and to let one of the dogs play in the wet and.  I was the limiting factor.  He kept asking me if i was ready yet.  I was still in my bathrobe.  I knew that we were going to be getting there really late.  I felt pressure.  And then I started crying.  I didn’t want to hold them back, but I aslo wanted to go.  I also didnt want to go, but I didn’t want to give up and not go.  Oh, what a jumble in my head.

I did go.  It was worth it.  The wind was strong.  The ocean was big. The dog was really happy. I slept on the way there and the way back.

x left this morning (no beach), P left to be with his girlfriend’s family last night, and KM leaves tomorrow morning at some really early time.  LK and I are going to hang out on Monday, but other than that, my friends have returned home.  I am, of course, a little bit sad from that.  But I also know that I have all my friends in NYC when I return.  Seven days.

I’m feeling really stifled by my family right now.  I know they don’t mean to.  But it happens. I’m really looking forward to going back to my regular life.

That said, I’m scared to have to take responsibility for so much of what my mother has been helping me with.  From helping me figure out what I could possibly eat, to making it, to doing my laundry, to supporting me emotionally.  NYC/Brooklyn is going to be a culture shock.  It is going to be hard again.  And there are going to be lots of people.

Day 15: Week 3 done

That’s about the most important thing today.  Week three is done.  And I kicked its ass.

I’m pretty tired right now, but a lot of that has to do with all of the excitement from my many visitors, and all of the exciting things we have done.

The pizza party was awesome.  Our hike was really aggressive.  All the way from the bottom of the marquam trail to Council Crest (elevation 1,100 ft), and then back down to my parents house on Sherwood (elevation 600ft).

And today we went out for really nice dinner.  P picked it.

I was freaking out on the way there.  Just an exhaustion/hunger/panic episode.  Tired, and claustrophic in the car.  Everyone was loud and boisterous, and my mom was getting lost, and driving erratically.  I was crying quietly for the last 5 minutes.  And when we finally got there, i just got out of the car at a stop sign, saying “i need to get out”  and walked into an empty field/lot.  I sat down and cried and then meditated.  And then did childs pose.  It calmed me down a bit.

I had to go out again towards the end of dinner because I was so tired I was getting to the point where I couldn’t take it.  So I went out there and did a little sit.  P sat with me for a little bit.  It was nice.  The sun was setting right into our closed eyes.

day 14: EPIC pizza party

i’m having a pizza party!

and then we’re going to have a big hike

so many people are coming, i don’t even know how many

like 8 people, or something.  and that’s not counting my parents

i had 4 ppl w/ me for infusion today.

we spent a lot of time trying to figure out whether it was a posse, a crew, or an entourage…!

and my brother comes in late tonight

its pretty cool