hello old friend

I haven't posted in a few months, why?

I've been going to therapy since May & have made an important personal discovery: almost all of the problems I've had in my life, whether it be with work, friendship, relationships, mental health, everything-- all of my choices in the last 20 years-- have been due to my low self-esteem issues. Have always been due to low self-esteem. I'm tempted to write an entire dissertation but will just leave it at that.

I wish someone had told me this 10 years ago, but alas. I had to figure it out on my own.

So, it's been necessary to work on other things besides this blog & cancer advocacy-- problems that existed before cancer, but have been exaggerated by the trauma of chronic illness. For years now I haven't been able to put my finger on my own unhappiness. I'm starting to get it now.

this book is written for middle-aged housewives but totally changed my life. 

I have been freelance designing and am still looking for a stable job. Still waiting for a disability decision. Still in chronic pain. Still don't have insurance & have been turned away from care several times because I can't pay out-of-pocket. I've looked into getting insurance through the freelancer's union but they don't accept pre-existing conditions (yet). what bullshit.

Still trying to figure it out, 3 years later.

On a positive note, here are two rad girls that have both survived Ewing's Sarcoma. I met Melissa at the beginning of the year and already feel so close to her-- like a sister. She found me through this blog, which is true confirmation that I'm doing something right by sharing my life. Feels like fate. I'm so glad she reached out to me. Another one of us in remission, fuck yeah.

southern comfort

bonaventure cemetary, savannah GA

Here are just a few pictures of the spanish moss from my trip to Savannah & Charleston. A friend is looking to buy a house down south, so I went with her, hoping to deter the chance of getting harassed while waiting at 4am in the Charleston bus station. The 20 hour bus ride was miserable for my body. Looking at decrepit historical houses and experiencing the strange but hospitable southern milieu was beyond fascinating. We went to several cemeteries on our trip, and they were all gorgeous. 

"after life's fitful fever, he sleeps well."

chronically chillin'

It's so exciting to see the amount of support that our comic project is getting! A BIG THANKS to everyone that has become a backer so far. Every time I see a new donation in my inbox I jump for joy. Someone even donated in palindrome! mmm symmetry. 

Today I want to talk about chronic pain (again, forever, we are always together).  I don't think people talk about it enough, considering how drastically pain can effect daily life. Are young adults too embarrassed? I am. I've always been the independent perfectionist personality type, so admitting to people that I can't handle the physicality needed to do something is always heartbreaking. Often I don't admit my pain and trudge on-- a decision I sorely regret the next day.

Currently I have a friend staying with me that wants to go on all of the amazing tourist excursions one takes while visiting NY-- and I fear I just don't have the energy.

Chronic pain steals your energy and holds it hostage. You've got to ration. If my friend wants to go to the MET & Natural History Museum, (which I'd love to see, btw) I have to plan my energy/pain needs for the day. I have to rest the whole day before, and whole day after.  I can't just decide that morning that I'm going to go. It's hard to explain to "normal" people, because I used to be "normal" and I miss the freedom it implies, even though most people take it for granted.

Imagine feeling exhausted 24/7 from the drugs you take to manage your pain, which is also present 24/7. Now imagine doing everything you do in normal life-- walking to get groceries, working overtime, entertaining friends, cleaning the bathroom, cleaning yourself. Chronic pain turns all of these menial tasks into colossal events that must be planned for. And I really, really dislike planning!

Awhile back I found a superb explanation of this dilemma from a woman living with lupus. You can easily substitute lupus for cancer or chronic pain in her example. If you are struggling to understand the needs of anyone living with chronic illness, especially young adults, I highly recommend reading this "spoon" analogy, cheesy as it might be. Here is an excerpt:

"It's hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing [sic] a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”."

My point is that I don't have enough spoons to go to the MET today, even though I would like to. It's impossible to understand living with chronic pain if you haven't before-- but it's important to try to understand those who do, and take it into consideration when you're with them. Not in a verbose sickly-sympathetic way, but just... keep them in mind. Us chronic pain sufferers are REALLY good at hiding it.

reflections and predictions

Since I was too busy with work to properly reflect on New Year's resolutions, I'll do so now.

But first, a little catch-up:

Monday was our a/w 2012 fashion show at Betsey Johnson, and sadly, my last day with the company.

backstage

this plaid was my doing (via style.com)

1/2 of the assistant design team

Working at BJ (however brief a stint it was) has proved to be one of the highlights of my life-- purely for the amazing people I've met, and the chance to know Betsey herself,  a personal idol of mine since I first resolved to navigate a sewing machine. How many people can say they've fulfilled a dream job they had at age 13? 

Unfortunately mine was a temp position, and my body ultimately couldn't sustain the 12 hour workdays for more than 5 months. The day after show I flew out to CA for scans to determine the source of my increased pain. I'll see my oncologist one last time this Tuesday for the results.

This break in Work brings up many questions about my future, which is something I am always reluctant to think about since Cancer. How can I find a job with a lower physical impact? How can I find a position that actually offers health coverage ( i.e., how to escape freelancer's purgatory)?  On a broader scale, what do I want to do with my life, now that I know my body can't quite hold up to 7th ave fashion industry? Now that I have crossed a life-goal off the proverbial list?

My thoughts scan back and forth between what has made me most happy in life, and what I could do to make others most happy.

Sometimes I settle on my past, on faults and bad coping mechanisms, or physical pain, but only briefly, as I remember all of the good I am capable of doing if I so choose. Without intending to sound melodramatic-- every single day is a struggle. But the days seem to keep coming.


So, what now?

my heart soars on the streets of Brooklyn

(via josh derr flickr)

So, I am here, fucking finally, after 2 years of failed planning, doubt, and illness getting in my way. I mean, it's still in my way, but from now on I'm going to be that rude bitch on the street that just elbows past it, never even looking back or apologizing, because I HAVE SOMEWHERE I NEED TO BE. So there.

(It's taken me a very long time to get to this point.)

I've had a lot going on lately. A documentary crew, which I am forbidden to speak of, has been following me since late April. They even filmed my flight here with iceman. It's incredibly surreal and exhausting. I'm doing this because I hope people will benefit from it in the same way as this blog; here is a girl you can relate to, whose had struggle and suffering and pain and is somehow stubborn enough to keep pursuing a dream, and most importantly, willing to let you into her life. Seriously, everyone is welcome. I invite you all to share my life with me. I feel it would be a waste if I didn't share it.

My health is stable right now. I'm currently on an oxycontin/codone regimen that works well enough. I'm not pain free, but I can get out of bed in the mornings. It does make me drowsy & I'm trying to get an rx for Nuvigil, which my doc said would combat the fatigue. Has anyone tried this? I worry that I won't have the stamina to work the normal 8-12 hour days required in the fashion industry. We'll see... I need to secure a JOB first, a task I am finding heartbreakingly difficult so far.

Keep trying, keep working, keep moving. Keep your chin up, kid. Many, many artists and writers that I admire struggled with countless rejections and few published works during their lifetime. The shared human experience is surprisingly consistent.

The comic is going well, I have left Jon with all of the final illustrations and we are preparing to finally send out backer prizes, yay! We are planning to release the 1st issue in conjunction with the airing of this "documentary series" who's name we dare not mention.

What else? I'm enjoying the beautiful weather and my working body, walking right foot, left foot, cognizant that I might not have the chance someday. Happy despite great faults. Hopeful to nurture new friendships and meet kindred spirits. and stuff.

that pretty much sums it up.

when everything is connected

I've stumbled across the astonishing blog of Derek K. Miller, a tech writer from Canada who intimately chronicled his battle, and recent death, from stage 4 colorectal cancer. He was a mere 41.

I say astonishing because I find myself relating so closely to his insight, the way he adapts to his disease, his matter-of-fact logicality and humor. He was able to prepare for his own death, and even had a living wake- basically, one final chance to party it up. The last post on his blog was published posthumously a few weeks ago, a somber summation of his life and what its really like to die.

"I haven't gone to a better place, or a worse one. I haven't gone anyplace, because Derek doesn't exist anymore. As soon as my body stopped functioning, and the neurons in my brain ceased firing, I made a remarkable transformation: from a living organism to a corpse, like a flower or a mouse that didn't make it through a particularly frosty night. The evidence is clear that once I died, it was over."

I'm so grateful that Derek had the resolve to share his cancer with the world, with the infinite interwebs, with me.

It reminds me that this blog is important too, for just that reason.

So, some people are dying right now, and some are still fighting , but I am living. Really living, moving on, trying to forget the scarred past, the residual pain, the uncertain future. Filling my head with the scent of new summer rain on unexplored Brooklyn streets.

I can't forget it, but I can build on it. I will add new layers. I will stabilize my crumbling foundation like this old brick wall outside my window. Still standing, somehow.

I'm happy for every miserable second of my life.