Father and son sitting on a couch with hopeful expressions. The dad is holding a teddy bear and has his arm is around the boy.

An Interview with Christian Garnett

Emily Garnett was a valuable contributor to this platform and when she died in March of 2020, the world lost a light, this community lost an important contributor and I lost a dear friend. She inspired so many people to live life to the fullest while we have breath and I know her loss has meant a great deal to many people.

The two people who miss Emily the most right now (outside of her parents) are her husband, Christian Garnett, and their son, Felix Garnett, who is four (4) years old.

Recently, after Christian and I were guests on the new podcast, “Our MBC Life,” I realized that I wanted to go further into detail about how he and Felix are adjusting to Emily’s death. You can listen to our conversation about Emily’s legacy here. My purpose in interviewing Christian was two-fold: one, to find out how Christian and Felix are doing; and, two, selfishly, to explore how a cancer widower is grieving and handling the loss. I often wonder how best to prepare my husband and my boys. Emily has been an example for me in many ways and this is no different.

Q: Let’s start off with the open-ended question, how are you and Felix doing now, approximately four (4) months after Emily’s death?

A: I think we are both doing pretty well, all things considered. As always, he has been incredibly sensitive and empathetic with me, and remarkably in tune with his own feelings. The other night he was having a hard time settling down at bedtime, and requested that I give him a specific teddy bear that he had never really been particularly attached to previously, saying, “I think it will comfort me.” Later that night, he had a bad dream, and came into bed with me and brought the bear, which surprised me. Then in the morning, he brought it downstairs with him, and while we were snuggling on the couch he got very thoughtful and said to me, “Dad, you don’t have any stuffed animals, and you are missing Mommy more than me right now, so you can have this one to make you feel better. And you can keep it for the rest of your life and the rest of my life!” I was pretty blown away, not only from that level of generosity from a 4-year-old but from the empathy and awareness of how I was doing. He very clearly understands what is going on and is paying attention. I will say, it also shook me up a little; my initial gut reaction was, “What do you mean you don’t miss Mommy??” because that was her worst nightmare, that he wouldn’t remember her. But that’s not what he said, he said that I was missing her more, which then made me question if maybe I’m not doing quite as well as I thought I was if he is picking up on it like that!

Felix and I talk about Emily all the time, and he has recently started telling me stories about her, unprompted, just things like "Hey Dad, remember when Mommy and I did so-and-so." I think that’s a really good sign – that he can talk about her from more of a place of happiness than sadness. But just like me, he has hard days too. When Emily and I gave him "the talk" when she entered hospice care, she told him that if he was ever missing her, he can close his eyes and hug himself tight, and it will be like she is hugging him. That seemed to really resonate with him, and I’ll still occasionally find him hugging himself like that, and when asked what he’s thinking about he will gravely point to the sky. He has also continued to be very open about her death, telling anyone who will listen that, "My mommy is dead, even though I’m only 4." I’m really glad he is open in this way, although I feel a little bad for the poor UPS guy!

Q: Thank you for telling me about how Felix is doing. As a mom, my heart just breaks for him; at the same time, I’m so happy to hear how you and Emily have and are giving him a language to express his grief. Let’s get back to you, how are YOU doing? 

A: Well, I can’t say that I’m doing great. It’s hard to gauge since there’s really no benchmark to use, but people in my life tell me I’m doing great. I am struggling and I’d say that I’m fairly depressed and I’m trying to work up the gumption to get some more professional help from a psychiatrist. I’m super scattered, unmotivated, work is like pulling teeth to try to do and I keep finding mistakes I’ve made. So I realize that I’m not myself. The pandemic is making it much worse and I find myself starved for adult contact. [Update: Since the interview, I have started seeing a new psychiatrist, and joined a new support group for mid-life widows, and am doing quite a bit better.] 

I realized the other day that from Emily’s death in March to now is the longest I’ve been single since my senior year of high school. I tend to have a hard time being single, as I really like having “my person,” but the prospect of trying to meet someone is nerve-wracking, and certainly isn’t helped by COVID. Emily and I had talked about my life after her, and told me both in conversation and in a letter I found after she died, that she wanted me to be happy and find love and joy, and to know that she was 100% on board in that, just with the caveat of no evil stepmoms! Felix was actually telling me the other day that he wanted a brother, which was heartbreaking because we were trying for a second child when she was diagnosed. That launched a whole conversation about needing to find a new mommy first, and he was also concerned about that and was asking what if the new mommy wasn’t nice to him. I told him I promised his mommy that anyone who came into our life would love him and be kind to him and that I would never break that promise.

Q: As a spouse to a metastatic cancer-haver, did you ever feel like Emily’s advocacy efforts interfered with your time together before she died? 

A: To be totally honest, at times, yes. Some of her projects sucked her in a little deeper than she planned, and there were times when it felt like 100% of the limited energy she had was being devoted to the project, with nothing left for us. But I knew how important the work was to her and how much joy it brought her, so I did everything I could to be supportive and not stand in her way.

Metastatic breast cancer advocacy

Q: What was your favorite part of Emily’s advocacy efforts? 

A: I think my personal favorite project of Emily’s was her blog, Beyond the Pink Ribbon. She always loved writing more than anything, so it was wonderful to see her doing something that brought her so much joy and she was so wonderful at. I also loved the impact it has had on so many people. She had so many people reach out, saying “I just got diagnosed and this has been a lifeline for me,” which was really meaningful. I was always shocked by the reach she had; she had regular followers in something like 40 countries, from every continent but Antarctica! One time, a nurse friend of ours told us about a patient of hers with breast cancer, who was raving about this blog she had found, Beyond the Pink Ribbon, and suggesting she tell all of her other patients about it! That was really amazing, to see that it had spread outside of our friends and family and was impacting the larger breast cancer community.

I think the reason the blog is so compelling is how intimate and raw it is. So often, memoirs are written after-the-fact, and with the benefit of time and hindsight. But she was writing it in real-time, so you see the fear, uncertainty, hope, and anger as they evolved. In fact, she was often more open in her writing than in person. I really enjoyed reading it because it often gave me a peek into her mindset that I wouldn’t otherwise have gotten. I never resented this; it was who she was and it was always that way for us in our relationship. In practicing law, she’d much rather submit a written petition than stand in front of a judge. In fact, we would occasionally have our fights in writing because she thought it wasn’t fair that she didn’t have the time to properly formulate her arguments verbally!

Q: What about her podcast? 

A: Emily was super proud of her podcast, The Intersection of Cancer and Life, and I think she felt it was her most important contribution to cancer advocacy and the MBC community. She felt those conversations were incredibly important and weren’t really happening at the time she started it, although I know she would be happy to see so many new podcasts starting up to continue those conversations. Conversely, I think she felt the blog was more of her personal journal and a legacy for her family, especially Felix. That might be part of why I have such an affinity for the blog.

Q: Of her advocacy, what do you think Emily was most proud of?

A: It’s hard to say, but I think the single thing she was most proud of was the keynote address that she gave at the inaugural Komen Foundation Westchester conference on metastatic breast cancer. As you know, Komen is often a controversial topic in the MBC community. They had reached out to her to help with various projects, and in true Emily form, told them no, not until they demonstrated that they were actually serious about MBC and supporting the MBC community. So when they had their first conference dedicated to MBC topics and invited her to give the patient keynote, it was very validating for her; she felt like she had really moved the needle with the organization. Of course, not content to rest on her laurels and play nice, she walked in there and let them have it, in a very truth-to-power kind of way. It was an amazing speech and was very well received.

I think she was also proud of the fact that she was able to be a kind of a bridge to help make steps towards reconciliation between Komen and other organizations. We both felt and feel that boycotting Komen was counterproductive. Like them or not, they are the elephant in the room. The fact that she was able to successfully work with and maintain good ties with BCRF, Metavivor, and Komen, and effect from the inside the changes she wanted to see.

The text of the keynote can be found here and the video can be found on YouTube here.

Metastatic parenthood

Q: Let’s talk about the Metastatic Parenthood project. What did Emily envision it to be? 

A: The Metastatic Parenthood Project is what she envisioned as her primary long-term legacy. We found that the programs of so many cancer support organizations are geared towards early-stage stage patients, and as such provide temporary or even one-time support: things like chemo care packages, which are great when you go though a set chemo regimen and then are done, but how many pairs of comfy socks and coloring books do you need when you are going to be on chemo for the rest of your life? These programs don’t really address many of the long-term needs of metastatic patients. We also found that parents with metastatic cancer, especially those with young children, have very different needs than, say, the 50+ year old whose kids are grown. These needs are not unique to breast cancer, and she wanted the organization and its services to be open to all metastatic cancers, not just MBC. She also wanted it to be a national organization, not just local. Given the relatively niche demographic, compared to the cancer community as a whole, in many areas there just aren’t enough patients to justify a local organization, and so those parents are left hanging.

The organization is still in the early planning stages, but the areas of assistance could be babysitting, financial assistance, legal work, etc.  To do this, the project would partner with organizations local to the family and facilitate meeting the needs articulated by the family. The project isn’t fully realized yet, but it’s ready to go when there are people to do so.

Q: What can people do to help?

A: The project is still in its very early planning stages. As anyone who knew Emily could guess, she had a ton of ideas for MPP initiatives: everything from babysitting to legal assistance with estate planning, to housecleaning. The first step for us is to narrow the list down and identify which initiatives can make the most impact, are the most needed, and can be realistically implemented by a new and small organization. So what we need right now is feedback from parents with metastatic cancer: what help they need the most, and what are the areas that are currently not being served by other organizations, because we don’t really want to reinvent the wheel. Please comment below and share any ideas, suggestions, or feedback.

Q: You’ve made an effort to grieve openly on social media and continue to talk about Emily in these months after her death. How has that helped you and could you tell me why you’ve been doing that? 

A: I’ve chosen to post about my experiences with grief and how Felix is doing for a variety of reasons. First, Emily was always so open and honest about her journey and treatment, and I feel like I owe it to her legacy to continue to do so. Second, I have heard again and again from other widows that people often stop bringing up their spouses after they die. It comes from a sincere, but misguided effort to avoid causing pain by reminding us of them and their death. But the truth is, just because you don’t mention her doesn’t mean I’m not already thinking about her all the time. All it accomplishes is making me feel like I’m the only one still thinking about her. So by talking about her and my feelings publicly, I’m hoping it sends the message that it is OK for other people to do so, and encourages them to reach out share when they are thinking about her because it really helps. It helps me deal with the complex emotions and how often I think of her and want to talk to her. Finally, I was given advice early on to keep a journal, especially during the first months, because everything would be a blur later, and it’s important to be able to look back sometimes and see your progress. I’m not really one for journaling, but I’m already posting on Facebook all the time, so every time I post about her I save the post to a special folder so that I can go back and read them later. I also saved all the wonderful comments and tributes from other people, because I knew I would want to be able to go back and would never be able to find them all otherwise.

Thoughts about legacy

Q: Any last thoughts you want to share with me?

A: I think Emily is an excellent example of why if you want to get something done, don’t wait, just do it. You can go from being awarded Rookie on the Year at the WEGO Health Awards to dead in less than a year and never get the chance to get out of the rookie phase. But that doesn’t mean you can’t make a lasting impact. I think everyone in the MBC community is concerned about legacy and how much time they have left and all the things they want to get done. I would say she was really proud of the fact that she didn’t let those fears and concerns paralyze her. Instead, it energized her and motivated her to do all these things she wanted to do even though she couldn’t pay all the attention she wanted to, she just did it because she didn’t know how much time she had to get it done.

You might not be able to do everything, but you can do something.

I think there’s a sense among some people in the metastatic community that if you throw yourself into something because you don’t know how much time you have, it feels like you are giving up or admitting that you won’t be an outlier. It’s a hard thing to convince yourself that you need to get off your butt and get something done because doing that implies that the clock is ticking and requires acceptance of that.

Emily always said that she felt like this was her life’s work, that all of her experiences had been building to this moment in her life. She was able to accomplish so much; not as much or for as long as she wanted, but she lived the last years of her life doing exactly what she felt she was meant to do, and I will always be proud of her for that.

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