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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Friday, September 23, 2011

Dear Anonymous: Attitude is everything (Gratitude helps too)

This is in response to someone who chooses to remain anonymous, but has interested me very much. What they wrote is here: 

This is anonymous, I have been you friend, you caretaker, someone who has said many prayers for you. When you played your little April fools joke I cried for hours. Each time the cancer as returned I have cried. Like you I am dying too. No, not from cancer. I have been sick for many years and they will never be a cure. I really have coded and died. You are very lucky to have such a wonderful and supportive family. Mine has all passed and are waiting for me. It is very hard to feel sad for you at times when you are talking about all the things you get to go with you friends. And you talk a lot about not having money, but there seems to be a lot of shopping therapy. For some of us we don't have all those things surrounding our illnesses, and its not that we don't suffer. You werw the one who talked about getting the attention in the DHMC ER, you opened the door on that one. I hope X is OK. Just remember you will be surrounded by love no matter what. Some of us will just be alone. 

Anonymous, I am so glad you have chosen to speak out over so many years of remaining silent. I heard the resentment in your voice from your first comment, and was confused why there was anger there. 

It's now my time to cry for you. I am so deeply saddened that you are burdened with a disease you feel you can not share and have no support for, and that your family, your support system, has passed. 

I'm sure you would do anything to have the "burden" of a sick child. 

I know I would not be alive today without my families' assistance and the motivation of surviving so my child will not grow up motherless.

I am so lucky, and I talk frequently about how fortunate I am, not despite my disease but because of it, to have experienced the vast generosity of humanity that only seems to present itself in the most dire circumstances.

Feeling lucky, appreciative, and happy is a decision I have made. It did not come naturally. It's a conscious decision that requires taking anti-depressants and training my brain.

It's an attitude I hope to be role modeling for others so they can cope as well. There are many things diseases can not do unless we allow them. 

They cannot cripple love, shatter hope, or corrode Faith. They can't destroy Peace, kill Friendships and silence Courage. Disease cannot invade the Soul. It cannot steal eternal Life and It will not conquer the Spirit unless it's allowed to.

I will not let my disease be stronger than my spirit, and I pray, neither will you.

I've invited family, friends, strangers and acquintances into my life in hopes having transparency in my trials will help others.  It hurts that the same judgments I feared from the beginning remain. 

I've humbled myself, asking for help, and in turn, hoped sharing 
private details and advocating for improved access to reasonably priced care would be enough. 

What I write about are not all complaints, they are facts.

 I hope you'll take this into your heart, the strong people surrounding me do. 

You can have a strong support group too. I'd like to communicate with you anonymously here, by email, however. You deserve better than how you feel, and you're never as alone as you think you are. 

Look to your church, the senior center, a therapist, dating service (they have ones that match people with diseases), I think you'll find you are all ready well loved. 

I want to address all you said, but I don't want to turn into an angry raving lunatic because the anger is not directly towards you, it's to everyone who judges anyone that struggles financially by saying, "well, they sure do a lot of retail therapy for claiming financial problems." Or "Why did they buy mums? They lost their house. Those $4 should have bought dinner?"

These judgments force people into suffering silently from fear that spending charity frivolously will become their legacy while they battle disease and a system on their own that is designed to bankrupt the patient. 

The health care system, though improving, oppresses consumers through taking advantage of the information asymmetry between insurance companies, health care agencies, providers and patients. 

This is what I advocate against. I hope people can read my story, learn from my experience, and be prepared, because it's not only a system but a social problem.

 Personnaly, I've been a frugal penny pincher forever. I don't have the energy to write about extreme couponing, shoppings sales, buying bulk and freezing. I'm busy doing it. 
I've cut my costs as much as possible, even to the point I'm risking blindness cutting my eye drop medication script in half. 

We're purchasing/refinancing our house since now I don't live in fear of the 2 million cap on healthcare.

 I wouldn't risk going blind and force my husband into refinancing for a shopping habit. 

It's a terrible fear of mine that people will overlook all the good I've done: my participation in creating NH Dept. Of Health's online records, my nomination to the board of Trustees to expand it into a communication system, fundraising for Relay for life, advocating for better care for everybody, and only remember, gasp, she accepted charity and shopped! 

Thank you for writing and thinking I will always be loved. I hope that is true. I also hope and pray that this will be true for you, too.


Cara said...

Dear Hillary,
You don't need that grief from someone like that!

Anonymous said...

i'm sorry. poor people more than any people tend to engage in shopping therapy. has this person never heard of the subprime mortgage disaster where people who didn't have money purchased houses they couldn't afford on credit? the only reason why this person knows how lucky you are is because you share with us all the time. life for some is an oscillation between the extremes of great suffering and great joy. in your case, the extremes are even more radical. you ARE fortunate to have a support network but are you supposed to feel guilty for this? you have been dealt such a ridiculously challenging situation. shouldn't you be entitled to support and some forms of therapy, whether they are shopping, sharing your wisdom with us, or veging out in front of the tv? this person obviously wants everybody to feel as crappy as s/he does. i am so happy you are endlessly resilient and bounce back to the extent that you do. keep on fighting for all of us. you are a joy.

Anonymous said...

HIllary, I am sorry this person tried to make you feel bad. You are a terrific person, great inspiration and are very honest about the difficult hand (to say the least) that you and your family has been dealt. I think that you do an amazing job and how strong you are is truly inspiring. If you decide to spend $4 on mums or decide to buy your dream purse...go for it! You deserve it! Enjoy yourself as much as you can! And please try not to let negative people bring you down! Keep doing what you are are a great person!

Loraine Ritchey said...

If $4 dollar mums or a day's shopping lightens the load you are carrying with you for just a few minutes, gives relief and and escape then it is priceless...... you have to do whatever you can to get through each hour each day there has to be something not cancer in your life. Your mind and body needs that respite..... you do whatever you need to do Hillary - only you know what helps and you are one terrific lady - Loraine