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?

November is ending and tomorrow begins 31 days of secret Santa adventures with one very special RAK per day, so tonite here it is in its entirety, My 2014 Gratitude List!

1. I am grateful for a roof over my head, a bed to sleep in with pillows and blankets and everything.
2. I am grateful that food is readily available, and through the miracles of indoor refrigeration and gas/electric ranges we can prepare a meal in under an hour.
3. I am grateful for libraries and the easy access I have to the written word.
4. I am grateful for my senses of sight, smell, touch and taste, and hearing.
5. I am grateful for music and a lifelong exposure to many genres allowing me now as an older American to find joy in not just the familiar but also the challenging and new.
6. I am grateful for my style of cognition, took me years to not only be comfortable with, but embrace, my own perspective on the world. I will never understand things the way others do, and there may be many things I do not understand, but I am happy to see music and emotions, feel colors and tastes and smells. I am grateful to be me.
7. I am grateful for the amazing and unique geography, flora and fauna available through just walking around in my state of residence. From the far but internationally known Sky Islands to the red rocks of Sedona and Grand Canyon, and well represented by the local Riparian Preserve and Mountain Hikes, Arizona has a magical and immensely varied beauty.
8. I am thankful for local Bookstores like Changing Hands in Tempe where the epicureans of devouring a good book can provide me with a menu of all the special flavors of yet untried authors and genres.
9. I am thankful for Goodwill and Library sales where I can find old favorites on Vinyl in a price range I can afford, like these Tex Ritter 78’s.
10. I am deeply appreciative of my experiences in the workplace as a nurse; there have been a couple truly poor fits which make me appreciate my current workplace MGA HealthCare and my previous Hospice of the Valley so much more. I am thankful to work in a patient centered healthcare environment.
11. I am grateful for friends who accept me as I am all of me the geek, the nerd, the genius, the compassionate, even the scared and broken parts. In friendship, my glass is always almost full if not spilling over onto those around me!
12. I am grateful for some farmer who nurtured and harvested these beans, the local hands that roasted them perfectly, the miracle that I can throw some of them, a couple cloves and cardamom and cinnamon in my grinder, run water from the tap and minutes later have the miracle of spiced coffee.
13. I am thankful for a truce between Pirate Cat and me, and all the affection Pele shares, and that they both could care less about my dogs.
14. I am grateful for fresh Pomegranate in the mail from a friend, snail mail get-well cards, the donations through my Blog, the anonymous donations and the in person visits and help through the most difficult of years. And I am almost grateful for this opportunity to learn how loved and blessed I really am in a truly George Bailey moment.
15. I am grateful for the ability to walk, run, pick things up and generally use my body parts in the way they are designed, that I breathe without a ventilator, eat with my mouth, and that my body excretes through natural channels. What a miracle with so many systems, so many of us remain functional for so many years.
16. I am grateful for the internet and all the minds and hands and genius that went into connecting us with so much information so readily, providing new artistic outlets, new ways to make friends and new ways to be a friend.
17. I am grateful for Christmas music, Christmas movies and bright Christmas decorations and its yearly reminder that unselfishness is cool, that it really isn’t about what we get but what we give that matters, and that magic is real. Believing is Seeing.
18. I am grateful for silence, meditation, calm, quiet, alone, peace. In this I must also say I am grateful for early mornings when walking outside it is still darkish and only an occasional bird warbles its morning sound.
19. I am grateful for making a difference in other lives, both the big ways (back at my patient’s yesterday and she was kind of happy to see me) and the small ways (letting old blinker guy in before he crashed into somebody) and knowing I am appreciated and loved by my friends, my patients and even some family.
20. I am grateful for my ability to feel pain and the protection it provides, like an over sensitive smoke alarm of the body it sometimes yells for no reason but more often it keeps me from burning myself, breaking something or otherwise permanently my form or function.
21. I am grateful for difficult people; they provide a loud living example of wrong responses to situations I will never have to try for myself. They teach me patience, compassion and forgiveness; the three most important attributes I cherish.
22. I am thankful for the dark days of loss that create the nights to dawns like today, and grateful for all the loves and laughter each dark night draws to a close, for memory and the ability in memory to relive the good parts and know again the joy.
23. I am incredibly grateful for libraries where books and books and books await my eager consumption for no more cost than my time. Libraries are my longest happy relationship.
24. I am thankful for dreamers and their dreams and their persistence to bring their dreams to fruition without which everything from my new awesome Starchild book to the truck that delivered it would not exist.
25. I am thankful for knitting, sewing and crocheting; they connect me to warm and wonderful memories of my mother, my good foster mother, and missed grandparents but also are soothing and repetitive when needed and challenging when that is needed and provide a solid sense of accomplishment as well as a creative outlet.
26. I am grateful for coloring books and crayons and colored pencils and scissors and glue and paper dolls and origami and all the other non-verbal ways I can play and create for little or no expense, but especially grateful for Mosaics and collages that remind me over and over again that broken things are just the materials for new beauty.
27. I am thankful for my children and how well they all have turned out as adults; I am thankful for their health and wisdom and hard work and general awesomeness.
28. I am thankful for the opportunity to be a Nanna; both because it means I lived long enough to have that title and because Archer, Bam, and Tam are the most fun I can legally have!
29. I am thankful for still experiencing failures and disappointments; each time I fall short of my own expectation I learn. I am thankful for this proof that I am still growing and changing as a person, and for the internal realization that every bit of brilliance, heroism, or just good story in human history is the culmination of repeated failures. So here I am also thankful that in life review I can see I have had a few of those moments of brilliance as well.
30. I am just so thankful for friends of all caliber and kind. My life has bumped up against so many other lives and I always come away a little better for the experience. I end this month saying thank you to you who have taken the time to read this very long litany of the lucky thing I call my life.
if our friendship is an old one, or new one, or just that of writer and reader, or maybe you are one of the relationships from which I learned forgiveness and patience, doesn’t matter, in reading this you listened, and listening is a gift for which I am most grateful .

Namaste.