Bows and flows of angel hair, ice cream castles in the air

I love the song “Both Sides Now,” I know, it is definitely not a Christmas song and the song itself is currently most heard in elevators but boy is it more accurate for my current state of mind than any Christmas melody.

Here is the label caution, don’t read any farther if you want to live in the lovely state of denial I prefer, that place where clouds are feather canyons everywhere because today I am going to tell you about the other side of chronic illness.

1. It’s lonely.
Don’t get me wrong, I am surrounded by love pretty much 24/7. There are all kinds of people willing and ready to do for me, take care of me, and generally be the hero to my needs, but far fewer who will just be my friend, who will trust me enough to take back from me what I can give. Few people who will just have a regular conversation that might actually include the indignities I live with and maybe even laugh with me at the worst of it, and understand when I am angry or cry.
It is also much harder to find in my old circles any who can find the grey area between my past overachieving independence and my current partial dependence. Most would rather do for me, than do with me. I am treated like I am fragile which feels like sub-par, broken and incapable.
Money is beyond scarce, I survive due to the kindness of friends; and my friends are all prosperous so not only can’t I not afford to do the things we used to do together, there is the dynamic of guilt if I spend any money on fun, not to mention I am just not as easy to be around as before, and often have to say no, so I just don’t get invited. (So not to insert a happy note in this diatribe of despair but I do have a core group who have watched movies at home complete with popcorn, played board games, and even supported my lego habit while letting the conversation go where ever it wants, I am really, really lucky and blessed, not everyone has such awesome friends.)

And this is just friendship, now think about being single, and dating.

How do you even have a first date if you are asleep every night by 8? What date is the right one to tell them that even if I get “cured” that my body is scarred, that I have to wear poise pads before playing anything like CAH or Apples to Apples because I will laugh hard enough to pee myself. Lets talk about if it is near a treatment day: there is something worse for your date to be wearing than granny panties, like you know, Depends.

So I look for friends and flirt but inside I know that it will go nowhere because I am not brave enough to risk that rejection and because I wouldn’t wish my reality on anyone. If I really cared about someone, how could I sign them up for the financial, emotional and physical realities of living with (not dying from) cancer.

So it’s lonely.

2. It’s painful. Every breath I take is a 3/10 today, when I cough my head throbs at a 10/10, my mouth and throat are peeling and have small sores everywhere. I am in pain so much of the time when I am not, I just lie still and savor the moment or two before moving. I use everything I can in my arsenal except narcotics, everything from Tylenol to meditation to acupressure to chiropractic care and manage to remain smiling and functional. If I am awake between 8 PM and 4AM, its pretty much due to pain.

3. It’s embarrassing. I cancel plans, I forget things, I say things wrong. I was a a truly dear friends house the other night, and I still don’t know what she heard.

I know what I meant to say, I was picturing both of us completely healthy six months from now, and I mean completely healthy, because what I give energy to, grows stronger and tried to say, “I just know this will all be over, I’ll still be here (yes, I do think about the possibility) and I can come over and we can roll around on your bed just for fun,” making fun of the hardest parts of hospital level helplessness. It came out wrong I knew by the look on her face.

I do that a lot more than I used to; I spent years learning how to interact beyond my introversion and that is less and less smooth. So I pretty much just open my mouth these days to change my shoes.

And my breath smells bad, and my body odor is worse, and I have issues, think low grade flu or morning sickness for weeks at a time.

Yup, it can be really, really embarrassing

But this is enough “reality”.

You want to know how I really am? I am just living my life. I don’t deserve pity or hero points. Most of us have things in our life that suck as well as things in our life that scintillate and inspire. These just happen to be the sucky parts for me.

So I am fine, in fact I am good.

Maybe I can’t do 60 hours anymore but I am working 30’ish at a job I love. Maybe a few friends have peeled off like an old scab from the wound of caring about someone who is sick, and maybe I won’t have a romance in my future; but I have some amazing friends among those who have stayed, and new friends who are either just ignorant of my situation to treat me like a regular person, or who have enough experiences in their past to not let it bother them.

I am lucky. I have great doctors, a roof over my head, and can still walk, eat, think and speak in my new normal.
So that my friends is how I “Really” am.

I know, I know, some of you want gory details or a prognosis or something to in anyway predict, define or control this process; well welcome to one across the board uncomfortable reality of anyone living with cancer.

How does it feel to want and wonder?