Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.

He has since died, and I took on the cause of making cancer care more transparent for everybody.

Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."

I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.

I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."

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Saturday, January 31, 2009

Perfectly Imperfect

You are right people, I am too hard on myself.
You know what else? I think I’m too hard one everybody else.
Do you want to know WHY? Do you want to know the whole culmination of events that made me the Hillary I am today?
Well, maybe I’ll give you the highlights.
I am a perfectionist.
But I don’t want to be. I want to be easy going and laid back and chill like my dad. I certainly can be like that. I think there is a time and place for everything. The trick is knowing when and where.
He was always a big idol of mine, but my mom had some major influences too.
She-bear momma (because she has my back in a big way) did always want the best for me, but she also did always want me to be the best (no problem with that).
Life was a fierce competition and I always wanted to live up to her standards. She was the perfect working mother. She balanced a significant career with being betty crocker for my friends and all while keeping our home immaculate.
I think that’s the way it’s supposed to be. It’s all I know, but I can’t keep up. I’ve tried and tried and tried, and believe it or not, I have eased up on myself.
When I first became sick, I would have an anxiety attack over dirty floors. The pressure to keep my perfect life in the presence of my illness and my body’s newfound restrictions would send me straight to bed with a migraine.
I wanted to keep up. I wanted to keep my life. I wanted the roles as nurse, wife, caregiver, bread winner, mom, daughter, sister, housekeeper, chef, and overall rock of the family, but I just couldn’t do it.
I couldn’t fight for the lifestyle I wanted and fight my disease.
However, my abilities declined before the people around me caught up.
There was a lot of hostility in this transition time. Many others just didn’t comprehend my new limitations and how they occurred so rapidly.
My friends still wanted to meet at the bar at 8pm.
I wanted to switch to lunches.
They wanted to head to the clubs.
I didn’t understand why we couldn’t party at my house, it was cheaper, we could have just people we liked, I made the drinks just as well, and we could pick our own music.
They just went to the clubs and the bars without me.
Other young people who have experienced this understand, but they are the only ones. I find great solace in knowing that this transition period is common. It scares me how long it lasts.
My family expected the same mom and wife, but I couldn’t look at food without throwing up. I couldn’t walk 15 feet. I did want to clean, but I would fall asleep on the way to the bathroom.
What was seen that I was not cleaning and “being lazy all day.”
Ouch. That hurts. Let’s just pour salt in the wound and add insult to injury.
Problems with communicated my ever changing needs has always been difficult. I blessed with the ability to roll with the punches and readapt to my ever changing situation so I can make the best of it.
Most people are not so flexible. It takes time to cope, but how long does it take. How long should I be patient before a write someone off as never being able to be understanding and empathetic.
I battle this.
I expect a lot of myself, and a lot out of others, since they have the physical ability to be and do what I was. I resent the fact that I’m in many ways physically incapable of contributing like I would.
I also resent the fact that I feel like my life has been severely shortened. I do not want to do anything other than what makes me happy. I don’t want to be around people that contribute to my sadness, anger, fear, etc.
If you are not part of the solution, you are part of the problem.
A lot of this perfectionism is anger and mourning in disguise. I do need to be easier on myself, but among those closest to me, I need them to be easier on me.
I need to catch a break in a big way. I feel like I’ve been struggling, fighting, and holding on by my nails for dear life for too long now.
I do want someone to take the reigns and join me as a partner and want to take part in my care. I want them to enjoy it with me to the best of my ability. I don’t want them to expect me to keep composed when I don’t want to or to yell at me when I throwing a kicking temper tantrum that I may break something or make me feel guilty for projecting a little anger on my doctor.
I want my actions to be accepted without judgment but guidance.
The people I wanted for this role do not want to come along for the ride and play by my rules.
That’s fine. I’m just comprehending how the expectations of me affect how I interact with other people. I want to stop being critical. But you know what, I’m not really critical, I could care less what you do, I just want my opinion heard for information purposes.
Take or leave my ideas. I don’t care how you live your life. I’m now judge. The thought that I appear hyper-critical and judgmental hurts.
I’ve actually consciously tried to protect myself from these traits. I’ve been the victim of harsh words and critical judgments to many times and the pressure is overwhelming.
I don’t want to be perfect, don’t know, never have, but I’ve never seen it done any other way. I’m just being me, and you can be you, and this way we can all live harmoniously accepting that we are all perfectly imperfect.
I just need to transform myself. In all honesty, these days, I only do what I enjoy. The things I do that I don’t enjoy are done under pressure from outside sources.
Now, I just want to be me and enjoy everything I have and leave the rest. I don't want to be bothered with the cunundrums and pettiness of life. A lot of things have become inconsequential to me, but treating others equally and with respect is still something I try very hard to do. To be judged as damaging and less than a compassionate person hurts. To be judged at all still hurts.
I hope you all understand this. Every action has an equal or opposite reaction, even psychologically. I need any pressure to be eased, because I have just about reached my breaking point.
Please accept my perfectly imperfect self.


Anonymous said...

Here here! It is an imperfect world filled with many imperfect people. Some are doing the best they can with what they've got, and some are not! You definitely fall in the 1st category, so easing up on yourself is a good start. It sounds like you are reprioritizing your life ... goals, friends, to-do lists. Great idea. I know you still need to think of germs, but a little sand on the floor or a bread crumb or 2 on the counter can be easily overlooked (or in my case MORE).

Keep your chin up, GO SOX! And I'm a former New Yorker that's living in MA, so yeah for MA.

Anonymous said...

I accept your imperfectness (is that a word). I am certainly not perfect either, and I have yet to meet someone who is! I am here beside you for as much support as you need!
I think it is great that you are choosing to weed out the negative in your life. My philosophy is if you aren't having fun, don't do it anymore! I think we all could take something from what you wrote and realize that we just need to enjoy life. You are amazing in our outlook on life.
Enjoy your time in Boston! But don't stay there too long! We need to hang out again soon! :)

brynn said...

oops that was from me hil!

linda said...

ummm, my friend with cancer has a live in nanny and i can tell you right now that anyone who says you are lazy is completely out of bounds. im not living through what you are, but i have been with my friend for the last year and also my parents and if there is one thing i have learned it's that some people can handle it and get it and some dont. and some dont get it, but get it years and years later. and boy do they regret not getting it when they really needed to be a hero.

Heather said...

wow! your words, they are "perfect" in so many ways. and i am guessing that this particular blog entry is going to reach many in ways that you can't imagine. i wish i could explain what i'm feeling a little better.

i'm still getting to know you- catching up slowly but surely. but so far, i am beyond thrilled to have found you.

on the days that you feel so tired, so weak, and falling asleep on the pot...try to know that even on those less than perfect days, you are touching others.

again, the right words just aren't happening with my foggy brain today. but i think perfect or imperfect...either way you rock!

Anonymous said...

Hill ... your comments & those which others have already left, are far more eloquent than this ole war horse can create ... so I will just say that you are the greatest. What I like best, is that you are not only trying to cope with some really tough stuff ... but you care enough to share some of your insights with those around you. What a gift!!

I believe you need to focus on the things that are important to you ... & let those around you either catch up ... or not. If it's the latter, then so be it. There are so many people who have been touched by you, that they can easily fill in any empty spaces.

So stay focused & strong ... but don't hesitate to lean on those around you when you need to. You do rock girl!!


Anonymous said...

Hillary, I am in awe of your ability to just write what you are thinking....I sit here wanting to write something that will make you realize just how perfect you are in your own little imperfect way... I wish you could see Hillary through the eyes of those of us who admire you so, so, so much..... give yourself a are one incredible woman.... Oh, and as far as your hair is are beautiful either way..