I'm about to get on a soap box and speak honestly. I apologize in advance if my rant offends anyone. That is not my intention. I am in no way trying to undermine the amazing work that cancer warriors are doing. I am in no way trying to diminish their fight. This is just my view from where I sit.
Since Jason's diagnosis and subsequent death, I've inundated myself with people in the cancer community. Whether it be on twitter, facebook, or other websites...there is certainly no shortage of wonderful cancer fighting organizations. And that's great! I've enjoyed getting to know a few of them personally and professionally, and I admire so very much the work they're doing. I'm even volunteering my time and money with several of the organizations. My beef isn't even with them, per se.
Here's my problem. For 1 year exactly - from May 28, 2008 to May 28, 2009 - I fought right alongside Jason as he battled his disease. I was there for every step, every treatment, every speed bump, and I was there when that beautiful man let go. I had support from friends and family, sure, but I also had the support of a few great organizations. However, that all went away when Jason died. Now that his fight was over, I - the person who fought just as hard as he did - was forgotten. I was discarded as waste - or at least that's how I feel.
Now, that's not to say that every group did that. I've been welcomed into the local Leukemia & Lymphoma Society chapter and have worked my ass off to raise money for our Light the Night Walk team. They've been amazing to me, and I thank them for realizing that just because the person with the cancer is gone doesn't mean that those of us left behind don't need support. I'm all for providing hope, support, and encouragement to those who are still fighting this awful monster. I want everyone with this disease to make it. I don't want anyone to have to go through what Jason went through. It was awful.
But, I'm reaching a point of anger...disappointment...and frustration. There have been a number of times lately like I've "overstayed my welcome". I get the feeling like no one in the "living w/ cancer" world wants anything to do with me - a widower. I suppose I remind them of the reality that cancer kills. I remind them that no matter how much hope you have, no matter how many prayers you say, cancer still kills. I now feel like I've become part of a forgotten group...the widows and widowers who have been discarded from the cancer fight because we remind everyone else about cancer's ugly side. And, to be honest, I'm starting to get a little mad about it.
I told Jason the morning he died that I would not give up the fight. I told Jason that I would continue to fight in his name. That's exactly what I've been doing these last four months. But, I almost feel like I'm fighting alone. I mean, I've got my friends (and his friends, too), and family of course...and there are the wonderful folks at the Leukemia & Lymphoma Society for whom I've helped raise nearly $8,000. Beyond that, though, I feel pushed aside, and I don't know why.
I'm curious to know if there are others who feel this way. I'd like to know if I'm out of bounds on this one...if I'm just being a bitter-body looking for someone to be mad at. I don't think that's the case...at least I hope not. Maybe this can just be chalked up to that whole "everyone else is moving on with their lives and I'm still stuck in the past" feeling.
I really want to be a part of the fight. I want to be a part of the hope, the dream that one day there will be a cure for cancer. But, I also want people to know that until that happens - the reality is cancer does kill. I believe people in the "living w/ cancer" world should hear from those of us who have watched our loved one's battle against the disease end before our eyes. Hearing that reality, in my view, could help ignite even more of a fire to fight.
I guess all of this was sparked by a comment I saw on twitter today. A man who created a cancer organization for young adults with cancer said something that really bothered me. He addressed the members of the media and begged that we all stop using the word "victim" when talking about people with cancer. It's not the first time I've heard someone say that. But what's wrong with the word victim? Does it make the person sound weak? Are they not being victimized by the cancer? Is it not wreaking havoc on their body? Does that not make them a victim? When Jason died...did he not become a victim of cancer? Once again - those who died (and those left behind) are pushed aside because those still fighting don't want to see the other side.
Maybe I'm just being too sensitive. Maybe I'm just angry today. I haven't been angry in a long time.
Until next time -- I welcome your comments.
Stuart
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I cannot speak to the same side of the experience that you are on. I am living with cancer but have not lost a partner to it, so I won't ever pretend to understand or know how this experience hits someone in your shoes.
ReplyDeleteWhat I can speak about is the young adult cancer community because I have been living with cancer for 9 years and researching and writing about it extensively for my book Everything Changes:The Insider's Guide to Cancer in Your 20s and 30s.
I too have noticed that the young adult cancer community has little room for grieving families and loved ones. (I cannot speak to the cancer community at large since my focus is so young adult.) While I find meaningful, hopeful connections in the relationships I have created with widows and widowers, I know that many cancer patients who are young and barreling through this do not want to be reminded of the horrible possiblity of death. I cannot judge them. I try to understand where they are coming from being young and afraid and needing deeply to stay distracted from death. I see why young adults need this cocoon even more so than older patients. Along those lines, I am curious if relationships to widows or widowers played much of a part in your life when your partner was diagnosed and still living? I know they play a part in mine, and I know I tend to be unusual in this regard.
I can think of a few examples of great leaders who are really out about their grieving experiences - Matt the founder of Young Cancer Spouses founded the organization after his wife died and he is very vocal about being a widower and his experiences facing end of life issues as a caregiver. Silas' Mom is a woman on myplanet whose son died young of cancer and she has made that her community for support. She is very welcomed there.
But it is a huge problem that I can only name individuals, and not organizations or programs who are putting a face and voice to cancer and loss. I agree 150% that the cancer experience is not over just because someone has died. For this reason I loathe the word survivor: if everyone in the cancer community is a survivor then what do you become after you have died? I'm not into dressing up the cancer experience in pretty language. Yep, your partner died from this disease. Vicitm seems like a fine word if that is what you choose to use.
Given how freaked out people in the cancer community seem by widows and the reminder of death - I am really surprised how many great responses I get on my blog when Charissa writes about her experiences. Many parts of the cancer community likes to deal in sound bites, twitter updates, fun events, and the positive spin. There is not much room for death and grieving in there. But every once in a while I do think you find pockets of the community that are engaged in deep, meaningful, "come as you are" connections and that those people do and will make room for the widows and widowers among us.
In writing my book, the three most overlooked parts I found of the young adult cancer experience were support for access to healthcare, LGBT issues, and support for end of life care and grieving. I ache to think about all of the other young adults who are out there in your shoes wondering what the hell is going on. I think you have every right to be pissed off, and I am pissed off for you. I have had some conversations recently with organizations about making changes and making more room for the death experience. I think things can be changed but it will take a lot of work.
Stay in touch,
Kairol
Kairol -
ReplyDeleteIt is an honor to have your comments. Your book is a great resource for those of us hit by this awful disease as young adults.
I want to answer your question about whether or not widows played a role when Jason was diagnosed. The answer is yes. In fact, it seemed that every time I sought advice and counsel from a caregiver, the only ones I came across - or that would talk to me - were ones who had lost their spouses. I talked at length with several of these former caregivers and they actually helped me immensely in dealing with the diagnosis at first. I remember talking to one caregiver at the very beginning whose spouse had survived and was cancer-free. She wouldn't even talk to me about it...saying that part of her life was over. I wasn't expecting that response at all.
But, like you, I have a feeling I'm in the minority in this regard. Looking back on the situation - I never once was uneasy or unsure about talking to the two who were widows. I never even gave it a second thought actually. They were caregivers who - whether win or lose - had been through this experience. Their advice was priceless.
It's nice to hear from a person living with this disease, though, that those of us who have loved and lost are not completely forgotten. I just wish there were more out there.
I understand the point of view of needing to focus on the illness...focus on getting better...focus on treatment...and focus on hope. I get that. There were plenty of times we buried our heads in the sand during Jason's treatment because we just needed to get through it. You do what you have to do to get through it. I get that.
I guess my overall beef is with the organizations themselves...not with the general patient population. I can't say for sure, but if I were a patient going through this, I'm not sure I'd really want to hear about death either. Jason did, strangely, though. He had to talk about it. I think he had to talk about it so he wouldn't be afraid of it. I felt blessed that he was so willing to talk about it because it made dealing with the situation easier (if anything during that time was easy). It brought it out into the open so we had to deal with it rather than deny it. It really did help.
You're right. Things can be changed and it will take a lot of work. But with people like us who won't lie down and forget about what happened to us, my hope is that work will get done.
Thanks again for your comment.