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.

beautiful passing

It is with a heavy heart that I announce another cancer friend's death.

This one is hard, because I've never met another cancerite who reminded me so much of myself; I loved her from the moment I met her last February through a mutual friend (you MUST meet Diane!). We bonded instantly, and when she had a recurrence (in the form of a rash-- weird, right?) we talked on the phone for hours about how difficult it is to be young and ill and to have your future snatched so suddenly out from under you.

Let me tell you of the awesomeness that was Diane: She was a historical fashion dynamo which none could rival. She knew her hemlines, decades and artists, a jabot from a cravat, and I looked forward to gushing with her about fashion's obscure geniuses. She published a magazine called Zelda (presumably inspired by Fitzgerald) about 1920's deca culture, of which several copies are still strewn about our house. Even though she was only 5 years older than me, I looked up to her as this monumentally beautiful, stylish, funny, intelligent, accomplished woman. She had a black bob, just as I did. It was like looking in the mirror. And, even when she had cancer, remission, and recurrence... she never stopped working towards her passions.

I cry as I write this because I am so utterly sad I wasn't able to know her better.

Diane died suddenly last week after complications with pneumonia, which was due to chemo and her lowered immunity. She battled aggressive breast cancer and recurrence.

The day I found out was the day before my fashion show, so, in my head, it was dedicated to her. Afterwards I spent time with her good friend J, and D, at our home. We talked & drank cider well into the night. Diane had told J that I was of great comfort to her, an inspiration, and that touched me deeply, because I'm not sure she would've ever said that to my face. These things are hard to talk about.

So, Diane Naegel, I am honoured to have known you.

I say sob story, you say get over it.

I was walking around the Tenderloin alone today, running errands, my muscles sore from all of this new activity, when I realized that OH MY GOD, I'm happy. Really really truly happy to have a taste of living once again. To be inspired by the strangers and the grey streets around me. The macaroni and cheese puke I passed by on Hyde didn't even deter my good mood in the slightest (although, why would it, after six months of chemo?).

I was worried that my former mess of a life would continue post-cancer, but that doesn't seem to be the case. I'm consciously trying to make the right decisions and allow positive, constructive people into my world.

I am breaking into sobs as I try and write this, now full blown tears dripping onto the hard-wood floor in a little puddle at my feet. I am finally realizing the scope of what I have just been through. The overwhelming fear and feeling of death, the daily gritting of my teeth as I prepare myself for chemo, needles and blood and puke and endless, indescribable pain. It's not even over yet.

All of this and still the chance to be happy. I can hardly believe it. This is why I'm crying.

You have no idea what you are able to overcome. You cannot fathom how strong you really are.

Trust me.

If anything, I want my story to show you that.