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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Wednesday, February 25, 2009

Outside Looking In

-Invention is borne of necessity

I am Lynette Scavo on Desperate Housewives. Well, mostly Lynnette. She has the rowdy boys. She had Hodgkin’s. She’s thrown up in public places by forcing her body to do things it shouldn’t for her children.
I think each and every one of us has a little Brie, Gabbie, Lynette and Susan, even Eddie (Ssshh, we can save that for our close friends).
The show is talking about how the “playdate” was borne to give moms a break.
Lynette, on this daytime rerun episode, has been ousted from the mother’s play date club.
I’ve been ousted. Mom’s don’t want their children exposed to X’s anger and preoccupation with death.
They all “understand” what a hard situation this is and how his “behavioral issues” have come about. They’re just not able to help and “risk exposing” their kids.
My son has been labeled.
You all may be able to guess what I am thinking, these mom’s are “assholes,” as well as ignorant.
And yes, some are reading this.
Unfortunately, their fear will significantly contribute to the future problems I am trying to avoid. Very few mothers have actually “manned up” and told me their fears.
Upfront, I’m told they’ll do “anything they can” or “our house is yours,” or “you can visit anytime.”
Those words are easy to say, but if you’re the one my son or I chooses, you better be coming through.
Then, after a while, dodging begins, the play dates get fewer and farther between. Moms stop making eye contact with me while talking. Their tones change. They’re always busy. They always have “plans.” They’ll “think about” what we’re going to do and “call me tomorrow,” and then only call my home phone or cell phone depending on where I am.
They are punking out.
They are “just not that into us” friend style.
I can tell you the exact day and time this occurred with a pair of friends. It was the day after my PET scan in January, and I was alarmed by the results and all the nonspoken, sensory information I was receiving.
The kids were playing in the livingroom and we were speaking in the kitchen of an open concept home. I was crying. I hadn’t confided my feelings in anyone else before.
After we spoke, and it was time to leave, X had a problem going. He yelled, he screamed, he hit, he hollered. He called me horrible names, told me hated me, that he wished I would die and just go away.
The father physically carried him to the car.
Learn from me, NEVER EVER think a child doesn’t hear, or sense the tension, when they are in the proximity of a discussion of this magnitude.
IF mom is crying about the possibility that her SECOND transplant fails and that she has NO OTHER traditional, safe, options. The kid will get the vibe.
That’s when the dodging started.
I get it.
Don’t judge, don’t riot, don’t threaten the people. It’s easy to say what you would do when you are on the outside looking in.
However, what is happening is they are in effect “abandoning” my child and taking his friends along with them. He already has attachment issues. This will certainly send the broad message that not even your best friends and people who openly say they are reliable ARE NOT.
Then, eventually, they tell me, usually weeks after I’ve read the writing on the wall, after many phone calls where I give them the opportunity to come clean, that they just “can’t do it.”
For all future people wanting to join my life and influence my child’s, you are either in it or not.
It is not okay to run in like a knight with shining armor telling people how you’re helping and how great it is only to quietly ease up and back out.
You are not a part of the solution, you are part of the problem.
Worse is the labeling of my child. This is a potent issue in small communities. A label can follow you for years. Do not underestimate the capacity of children to feel your emotions towards them.
Yes, he is five, but the other children lean these things from somewhere. My guess is, since their new to school, it’s in the home.
You don’t see that my son comes home and cries because he’s been left out or so and so was mean to him, and did I know that “other mom’s aren’t bald?” He also asks why “I can’t come to class” or “drive him to school” or “live at the hospital.” He wants to know why I’m always “leaving” or “moving.”
I can certainly show you how he cries hysterically at night, like many of you have about my situation.
There is a theory of “self fulfilling prophecy,” if you label a child, they will become that child. They will live up to expectations, even if that expectation is that they are rowdy, angry, and preoccupied with death.
This also lends to a common problem I have encountered time and time again with friends, acquaintances, strangers, and all other people from all walks of life.
They have a very adolescent tolerance for illness. It’s cool diving in and understanding the lifestyle and dynamics, but the reality and stress gets old very quickly.
Dedication is not a three month, in and out style, helping, that is part of the problem.
Dedication is staying by our side through the roller coaster of diagnosis, treatment, remission, relapse, more treatment, etc.,etc.,etc. and not backing down. Dedication is not judging by talking to all your other friends who do not know us, giving your side of what a “problem” this is, then saying how you “understand.” That is gossip. It could turn my family and child into a social leper.
I haven’t backed down, but you would be amazed how many people cannot even tolerate being close on the outside looking in.


pr said...

Dear Hillary,
Yes, I am one of those who has read your blog and has taken time to pray for you.
You see, I a love one of those people you call a..holes. I happen to know people have gone above and beyond to help you in any way they can. You are a very, very selfish person, sick or not.
If you spent more time parenting, and nurturing your relationship with your family, than on this blog, I think you would find life more enjoyable. I know many very ill people who have to go through it virtually alone. You have had
an unbelievable support system. You are the adolescent thinker here.For all those selfless acts of kindness, you should be forever grateful. But no, you think they have given up or are not in it for the long haul. Believe me, you have made it impossible for people to stand by you. God gave you the responsibility to parent your son. It is not everyone elses responsiblity. When my children were little and impressionable you better believe I protected them from children and adults who could in any way harm them. We have one chance to do it right.These parents are right to protect their precious children from a child whose behavior is not just bad but alarming. You need to own up to your responsibility today. The people you say present a fear. I don't believe that to be true at all. I think you are afraid to realize it is only within yourself can real change take place. X needs more from you than anyone else can give him. He's acting out because he can, not because you have been ill. You need to stand up and be the parent you need to be for X

Dear Hillary

Sig said...

So sorry Hill,
You can't possibly understand unless you have "been there".
All ic an say is "ush" and wish i was there.

Anonymous said...

Pr, I think that was pretty harsh and unkind. You haven't walked in Hillary's shoes. You really should have kept those thoughts to yourself. Can you find it in your heart to be kind, even if it means holding back? Sheesh.

Anonymous said...

It is very true that it can be difficult from the "Outside looking in" But it can be just as difficult to see things clearly from the inside looking out. When you are faced with life threatening illness, you can never look at life the same. I have cared for many dying patients, who say they cherrish every moment,living life to the fullest. I once took care of an 18year old patient, who begged to be released from the hospital to go to his senior prom. He was much to ill, so to his surprise, some of his best friends wearing formal attire marched into the hospital to bring the prom to him. Unfortunately, I have also stood by as a mother held her 5 year old,sobbing,as the child took her last breath. I have been to more funerals than the average person will see in a lifetime. I have seen death. I have seen the sorrow it brings as well as the smiles. I think I can safely say I have cared for hundred's of "dying patients".This however is not about me. As I said before it can be easy to pass blame when you are on the inside looking out. The true heroes are not the dying, but the living. The people who of their own FREE WIll offer a helping hand, asking and expecting nothing in return. The heroes who help out even when they are sick, because they worry that their "dying friend" might be even more sick. These, heroes make a choice. Whether it be skipping prom to spend the evening with your best friend in the hospital, or bringing dinner over for a friend. The sick do not get to choose their plight. It has been chosen for them. "Sick" however, does not define a person unless, that is how they define themselves. I took care of a patient with pancreatic cancer(a very fast growing cancer) I asked her how she was doing. she smiled and said," well I can choose to spend my time here living or dying. I choose living." The moment we are born the process of death begins. In essence, we are all dying. We all, however can live life to the fullest, be greatful for every breath we take, and never assume that the person sitting next to us just doesn't understand. Above all, responsibility lies with family. Any mother wants to and should protect her child in any and every possible way. Children are impressionable. When it is all said and done, every parent is held accountable for their own child's wellbeing. If that means separating them from a bad influence, that is a good parent. I have been as kind a possible, however, their are limits. This blog was a very brutal and heartful attack on those you should consider your heroes. Those who didn't have to be there, but they were anyways. I am sure that when this friend you speak of needed to separate her child from X, You have absolutely no idea how difficult it was for her to tell you. It was probably one of the hardest things she ever had to do. You turned a very private matter into a public one when this blog was posted. That is unforgiveable. It is no wonder mothers haven't "manned up". They risk being placed in a very hurtful and slanderous blog. It is easy to point the finger of blame from the inside looking out, but be careful. Friends do not come easy, and a one-sided friendship cannot survive. You must be a friend to have a friend. Nobody can replace a mother's influence. I am sure you have unmeasureable love for X, and would do anything to protect him. So, how can you judge other mothers for wanting the same for their child. According to the American Cancer Society, over 1.4 million people were diagnosed with some form of cancer last year. You can choose to be either dying of cancer or living with cancer. Living is so much better!!!!!

Bekah said...

I refuse to have any part in disagreements via the internet. But, as for one of those people who is 'kinda in your shoes,' but not even CLOSE since I've only experienced ONE transplant.

I can hardly take care of myself. At 25, some days. Let alone think about friends or family.

This is your venting spot Hillary. All you can do is the best you can do. And you're doing it.

Keep putting one foot in front of the other. Know, we're here, cheering you on.


Anonymous said...

To all of you reading this blog post and the comments:

As the father who carried X to the car kicking and screaming, I would like to give the readers a chance to see the other side. This is a hard situation for anyone to go through. We do not and can not understand fully what it is like to be in Hillary's shoes. By the very nature of who we are, we can only see things from one perspective, our own.

My perspective is this: We happily volunteered to help Hillary and her family in any way we could, even though prior to her illness, we had not been close friends. The biggest way that we were told that we could help is by taking X to school and picking him up and keeping him at our house until his dad or grandparents could come pick him up. We have also been happy to be invited to participate in other events with Hillary and her family and felt as though our friendship with them was growing, despite the difficult circumstances.
As you can see from this post, our friendship was not fully developed. I believe that if Hillary viewed us as friends, she would not have posted these comments. It is very difficult to know how to tell someone in Hillary's situation that her son is exhibiting behaviour that is both alarming and frightening to parents of young boys who are very impressionable, and also about half the size and strength of X, who is very big and strong for his age, which would be fine except for his physically violent behaviour.
I bear some of the responsibility for not being up front with Hillary, and to be honest, it was because I was afraid of this very reaction that she has demonstrated. Still not knowing the right way to talk to someone about such a sensitive issue is no excuse for not trying.

However, Hillary is incorrect in many of the angry things she said in this post.
We did not label her son.
My wife is not an ignorant asshole.
Our "fear" will not significantly contribute to the future problems she is trying to avoid.
We did not run in like knights in shining armor and tell people about it and how great it was.
We do not have an adolescent tolerance for illness.
We certainly have not judged or talked about this situation with all our friends and gossiped about the situation.

What we did was volunteer to help someone in need, someone that at the time we did not know very well. We did this because we wanted to, not because we had to. All we did to deserve Hillary's anger was tell her that we couldn't keep X after school anymore and declined invitations for play dates because we were not willing to put her needs above the needs of our own young children. On the same day Hillary posted this my wife was still picking X up at school to bring him to his house and was greeted by an angry Hillary who did not want to discuss the matter but said that my wife could read about it on the blog.
Friendship is a two-way street. Now I have not said half the things that are on my mind concerning this because my goal was to simply round out the picture, not vent my anger and disappointment. That discussion will be had in private. But for you reading this, rest assured that I will be demanding a public apology for this public demeaning of what me, and more importantly my wife, have tried to do to help Hillary and her family.

Anonymous said...

I agree with pr. I also care about the one you called a..hole. Where is the "thank you for all you have done"? I know its a me me world. I am sorry for your illness. But you can't expect people to be there all the time. My friend is not X's mother. She has her own children. I do know you personally and I have tried to be there for you in the past, its not an easy task and I got burned in the end. I used compassion and let it go. I did not get online and humiliate you. Yes people will say this is harsh but I have seen the damage done.

Brynn said...

I am not going to speak to the people who have said harsh words to and about Hillary. I am going to speak to Hillary.
You are a strong person who is doing the best she can in an unimaginable circumstance. This is one of those things where you don't get it unless you have gone through it. I myself have not gone through this. I do have to say that it is NOT hard to stand by you Hil. I think if the world showed a little compassion it would be a better place.
Keep on keepin on girl! You will fight this with the people who care about you the most! :)

Heather said...

wow. i am sitting here literally stunned by these comments. not knowing any of you or having the opportunity to have met hillary-leaves me only going by what i've read here. and my own personal experience of a mother of young children who had to deal with the very real possibility that their mommy could die from cancer.

first of all, it seems that yes this is hillary's blog. a place to share what she is going through, educate and yes to vent. i don't believe any names were mentioned in this particular entry. i tend to agree that she can vent however she pleases here.

just as she has the right to express her feelings on her blog, she has allowed us all to have the same opportunity via comments.

i have no doubt that feelings were hurt on both sides of this.

i'm finding it difficult to imagine what behaviors a small child could have exhibited to cause such alarm? as a mother who has had cancer i am really shocked and saddened at the judgements apparently passed on such a small child going through a situation that no child should have to. have you all no empathy or understanding whatsoever? not even the ability to cut people in a very, very rough situation some slack?

i sincerely hope that none of you ever have to take a walk in hillary's shoes. but should you, i can absolutely guarantee that you will see things differently.

and if the biggest trauma of your day is being called an asshole...well then i'd say your life is pretty sweet.

Sig said...

Wow, OK, first off, my first comment meant to read, "All I can say is "ugh" and I wish I was there". That is what I get for typing without drinking coffee first ;)
Hillary, I can only imagine what you are going through. I have not relapsed or had transplants. However, I know during my cancer treatments I was very selfish. I had to be. And my kids had tantrums and it was not fair, DAMMIT!
I am sorry for all this.

Dani said...

I have to agree with Heather, that 1. No names were dropped
2. This is Hill's blog and she has the right to post anything and vent as she needs.I'm sure everyone involved had their feelings hurt, and again, as Heather said until you walk a mile in Hill's shoes you have NO clue as to how to even process dealing with everything she has on her plate. Another good point, "if the biggest trauma of your day is being called an asshole...well then I'd say your life is pretty sweet." You did a great job of summing it up Heather.

Anonymous said...

Being sick does not give you a license to hurt those around you. No one has gone out of their way to oust Z. No one wants to hurt Z. No names were mentioned but my friend was told "I will not discuss this now, you can read about it on my blog". Healthy people hurt too.