Saturday, June 17, 2017

I Want To Be Heard

We were riding the train in the Cincinnati airport after a long weekend of family tied together by people from long ago. My stop was terminal A, hers terminal B.

As my stop approached, the two of us standing beside each other holding onto individual poles preventing us from falling, my aunt looked at me and said, “I couldn’t read your blog.”

Before that moment, I assumed she had forgotten I had a blog. On our second full day together I learned that she did not understand stage IV breast cancer is terminal asking me, “So what is your diagnosis?” So, bringing up my blog at the very end of our time together did not exist on the list of things I expected her to say.

I quickly jumped into protection mode not wanting to hear any negatives about my writing. “It’s okay,” I said. “I was really depressed in the beginning. It isn’t so dark now.”

Because I was able to get to know her better over those few days, I know now she was not bringing to light any negatives about my blog. She brought it up to tell me she now understands why I have a blog.

The train stopped. Before I departed my aunt said, “I think you want to be heard.”

Nodding my head I said, “Yes, I think I do.”

We hugged goodbye. I departed the train giving more thought to what she had said, the doors closing behind me.

She is right. I do want to be heard. I want to be heard, but I want the people who are part of my life to want to hear me. I don’t want to force it upon them in conversation. I want them to take time out of their day to read what I write because they care about me even if it makes them uncomfortable.

I have long suspected that the very people I wanted to read my blog did not. Those family members were the people I targeted when I first began to write--along with a few friends. My expectations of what I think family should or should do or be to one another are often much higher than what reality actually gives me. This is proof of that.

Maybe I am asking too much. My want for people to read my blog so they understand my emotions connected to my death is perhaps more than they are willing or capable of doing. Breeching the subject can be highly emotional. It could cause me pain and pain for them as well. The conversation of death is often avoided because dipping your toes in it may cause a dam to break. Staying clear keeps everyone from drowning. There is a great need to protect against that. I get it.

On occasion I have slipped into a conversation with a family member about my disappointment that no one except my two oldest daughters read my blog. That little push has caused them to take a moment to let this part of my life into theirs. I might hear something small about it the next time I speak to them but after that, nothing.

I feel selfish feeling this way. There is nothing so special about my thoughts that must be read. But I do want to feel as if my thoughts and words matter to them. Then, maybe, once in a while, when they are telling me about their lives they might acknowledge that my world is different. One where I have to consider I might not be here next year while they get the luxury of planning their future years not aware as I am of a timeline with an endpoint in the not so distant future—statistically speaking. The two perspectives are vastly different.  

So yes, dammit, I do; I do want to be heard. I want people to know what I am going through. That I am scared, hurt, and full of pain, rage and self-pity for a disease I cannot control. And I am jealous, yes jealous, that the people in my life can pursue things that I will never be able to.

Yes. I want to be heard. As another scan approaches--June 26th-- my fears are enhanced. That day I must rise much too early in the morning and journey to a machine revealing my future is the day I need to scream into the universe because I don’t know what else to do. This blog lets me do that. I am screaming in this post. My life and my death are racing each other.

I need to give away my grief. Put it out there so I don’t feel alone trying to live as I do constantly having my death hovering over me. It never leaves my thoughts, how can it?

I carry cancer with me, everywhere. I carry the thought of dying, everywhere. When I am tired, my defenses are weakened and can easily reveal on my face my feelings if prompted by the right stimuli. When everyone around me is struggling to be heard about the things that are bothering them, I am struggling too to keep myself from letting loose and scattering all of me in front of them. I am losing so much; I am losing my life. I am not ready to die. There is so much I want to do.

My words strung together from thoughts in my head matter to me. Maybe I shouldn’t care so much that my loved ones hear them. But I do. They are my words expressing how I feel. Sometimes I just need validation they care. 

Somehow, I thought my loved ones would want to hear my pain and offer me soft words when I needed it. I was wrong about that.

We are all islands living among each other and not really stopping to listen to what the other needs to say. I too am guilty of forgetting to listen, but am trying to correct this mistake whenever I can. I think we all want to be heard and want our feelings to be important. 

So it is to my two now grown daughters, to a few friends who have let me know they read my blog, to those people I have never and will never meet, and maybe one day to all of my family members that I want to say thank you for giving me some of your time. Thank you for reading my blog and for listening. I do need to be heard by someone, anyone.

You are it.


  1. I hear you loud and clear and understand exactly what you're going through as I feel exactly the same way. I have people in my life that just don't get it and I find it so frustrating when asked over and over again what type of cancer I have. They think that because I'm in remission that it's all over for me and I've beaten cancer when in fact I haven't.

    1. Good to know I am not alone. It IS frustrating. It would be nice if the people we have in our lives would sit down at their computers and do some basic research about our situations. We still would probably have to explain some details about our individual situation, but their desire to try and understand would mean so much.

  2. I am listening!! ... You are so brutally honest. I don't know you personally Lisa. But I expect if I did, it would be extremely difficult to read about the emotional turmoil, the pain and suffering you experience as a result of this relentless, dastardly disease. But most importantly, your close and extended family and friends can't do anything to alleviate your suffering. It's hard to be a bystander. They love you. It makes them feel terribly inadequate and helpless. And no-one wants to feel this way. So they avoid the blog. Or, perhaps they do in fact read it. But they don't want to say, for they don't want to talk about it. Especially not to you. And why? Because it hurts. It hurts for they all love you so much Lisa. You're a wonderful person. And a gifted communicator with a generous heart that draws people in. I'm also sure those close to you are so desperately proud of you. Try not to forget that you are loved. And you are making a difference in the lives of others. Thank-you Lisa. xoxo

    1. I agree with you and feel selfish for wanting more from my loved ones. Because I like to do research, I think "why can't they just go look it up". But, not everyone is like me. I appreciate your reminder that just because I don't hear them speak about their concerns for me, doesn't mean they are not listening.
      Thank you for your incredibly kind words. And, thank you for listening.

  3. I also am listening. Although I do not know you personally, I have found your words moving, and your thoughts very much worth considering. Some of the research you have shared has been very informative.
    I think in many ways it is easier (to chime in with what Denise said above) to consider the situation when you are emotionally not as close. The entire time my dad was sick, anything he said to me about how he felt and his prognosis felt like it was ripping my heart out. But I listened...
    If my mother had a blog (back in the late 1960's!), I'm not sure I could read it even now, thinking about the emotional agony she was in, leaving a husband and a three-year-old child.
    I know that many people around me don't want to hear my latest health concerns, the possibility of metastasis (to the extent that they've even bothered to learn what that word means). As so many have commented, others' illnesses bring fears of one's own mortality, as well as terror of the loss of a loved one. Denial is so, so much easier.
    But I suspect that more are listening that you think. Hopefully even a few that you want to listen -
    I will be thinking of you next Monday, hoping for good results. I had a PET today - we shall see.

    Cathy S.

    1. Oh, Cathy, your poor mother having to leave you at 3 years of age--horrible. I hope she had family and friends who could break away from their own fears and invest their time and energy into being there, not just physically but emotionally, for her. And, your dad was lucky to have you there to listen to him. I am so thankful for the internet giving people the ability to connect with others going through illnesses. It has been tremendously helpful to me because look at us, talking to each other, you helping me even though we have never met. Thank you for that.
      Mostly I can deal with my fears on my own (this blog helps). But, at some point I may need support from my loved ones, and I am afraid if they have no desire to read my thoughts here, they will not be able to or know how to offer support for me later. I want my loved ones to understand why I can fall into tears in situations where I wouldn’t normally cry—sometimes more easily than even I expect. Their refusal to spend time with my thoughts leaves me feeling alone. I guess this situation of feeling separated from loved ones because of illness is why some people say we are born alone, and we die alone.
      Through this post I have discovered that one of my loved ones is reading my blog. I did not expect to hear that. It was a nice surprise.
      Thank you, Cathy, for listening to my venting about the things that bother me.
      I hope any anxiety you felt about your pet scan is relieved by good news! I will have you in my thoughts.

  4. Thank you for sharing. I think ww all want to be heard and have people understand our journey. My scans are June 28th so I get that up coming anxiety.

    1. Hi, Kathryn. I agree with you everything you said. I hope your scans leave you with nothing to worry about. Thank you for taking the time to leave this comment for me.

  5. Oh my! Very profound words Lisa!
    I totally appriciate that you thought a blog would be an easier way to help those that you thought were closest to you be even closer by reading your fears and journey. And I totally understand the disappointment when you find out that not everyone you thought would participate wants to pause and listen. And it hurts. Plain and simple.
    I also thought my extended family was very close and cozy, but because I asserted myself about some things there is now a rift. It turns out that thier feelings are more important than mine and I was the one being selfish and I was told I was a horrible human being. I was also told it didnt matter that my daughter had been sexually assaulted, that we werent doing enough to suppport my father who had AML in the midst of all this (this was two years ago and there was several crises on top of each other). There were several other accusations towards me and my immediate family but those were the worst ones. It was amazing to me how much judgement came from the people whom I thought loved me most. I thought that love equaled understanding but it was actually a one way road when it really came down to it. I always knew that my family was very opinionated but I thought that because of cancer I would be treated more gently and with care. Boy was I wrong. Of course I was devastated at first, but I did my best to remain by my fathers side until he passed as he was not at fault. I am not sure who all in the family knows the details of all this. I did think about writing a letter and sending it out. I wrote the first couple of pages and you know what? I felt better. Even though I havent finished it, much less sent it, my need to let everyone know about my huge hurts lessened. I still might go through with it at some point. I am not sure. There could even be more developments in the story when and if someone sees what I have written here. But I am not afraid anymore of the opinion or judgements anymore. I am me and my feelings are what matters. I have the support of my husband and grown daughters and we are closer than ever. That is what is most important in the end. I dont need everyone to love or even like me anymore. I do wish they would try to understand though. I do want to be heard too. I understand the need to be heard. I am glad that your aunt got that at least. I do wish that people would put down thier fears and feelings and comfort those closest to them. I would do anything asked of me of some one that is dying. Reading a blog would not be the hardest thing I could think of. Nope, not the hardest thing at all.
    I appriciate your words, and now I know that I am not alone with my desire to be closer to loved ones. Do keep blogging and posting. You are making a difference. I hear you.
    I send my wishes for you and your other readers with cancer the best possible response to treatments and great scan results!
    Hugs to you!

    1. Kim, Family can be cruel, as we both know. I wish it were not so. You have been through much heartache. Finger pointing from your family members was not what you needed at a time of such difficulty. So glad to hear that your immediate family was there for you and continues to be your support team.
      Writing has always helped me work through the things that bothered me in my life. Good to hear that writing the letter made you feel better. Even if you never send it, I think you should finish it so you can remember --if ever necessary-- how the whole event made you feel and what events brought you to where you are today with those relationships.
      You are definitely not alone in wanting family to care more deeply. Thank you for reading my post and for leaving your thoughts for me and others to read.

  6. I hear you Lisa and I'm listening. I just came across this section in your blog and now I am going to start reading from the beginning :) More later.........

    1. Wow, Unknown, thank you! Thank you for listening and for reading.

  7. I get it. I feel very similarly. Thank you for the truth. xo PS. I'm trying to leave comments under either my google account or my URL but not sure if it will work, Claudia (myleftbreast). Thank you also for including my blog on your list.

    1. Claudia, You are welcome.
      Thank you for leaving this comment. I hate that publishing it has been delayed for this long. I sifted through so many comments yesterday that had been waiting for my approval to be published. I had forgotten that I decided this was the best way to handle all the junk comments I was receiving. Glad I found yours among all the ridiculous amounts of spam.