Going Dark
Depression has been on my mind a lot lately, for three reasons.
First, it’s been on my mind because I went to a funeral on Monday for one of the nicest, friendliest, most gifted people I have ever known. He took his life; I hadn’t even known what he was going through. At all. I don’t think many people did, and I have to believe that nobody knew how badly he was suffering.
And it breaks my heart, because I would have considered it a privilege to help him or be there in some way for him. People shouldn’t feel like they should have to hide or be ashamed of depression.
Second, I recorded a podcast with a professional mountain bike racer (Erica Tingey) today, and we talked about her ongoing battle with depression.
The thing is, she and I had recorded a conversation for my podcast earlier this year — in which she hadn’t really talked about depression — but the file had been truncated for some reason and I had to call and beg her to re-record with me.
Meanwhile, she had listened to my conversation with Paul Guyot, and had decided that if he could be open and honest about tough times in life, she could too.
And that made me think: part of making anything accepted in the world is to talk about it without embarrassment, and to listen to others as they tell their stories.
So, today, I’m sharing a little about one of the less-known parts of Susan’s battle with cancer, because it’s one of the places where I feel like I fell down: helping her with the depression that came after the chemo.
“Going Dark:” — an Excerpt from Fight Like Susan
There are a lot of things about how I took care of Susan for which I am truly proud. I took care of her, I loved her, I went to the doctor with her. In many ways, I was my very best self when Susan needed me to be.
But there are two things I just did wrong. Things I really regret, to this day.
First, after getting through chemo the first time, there were certain meds (I’m not going to list them, because I’m not interested in an argument about what she should and should not have been taking) that Susan was supposed to take, from that point forward.
One of them she did not like taking. It made her gain weight, and she already felt incredibly self-conscious, thanks to her hair loss and missing breast.
So she refused to take it. And I didn’t press the issue.
Sure, I told her she should, and told her it was important for her to do what the doctor said…but I didn’t go to the mat on it.
Years later, I talked with an oncologist about this, and was told this very likely didn’t have anything to do with Susan’s cancer coming back. But for years I felt like in this thing I had let Susan down, and wondered if her cancer recurrence were my fault, because I hadn’t taken a tougher stance.
So that’s one thing I regret.
The other thing…well, I feel even lot worse about it. Because I could have — should have — helped, and I didn’t. Because I didn’t understand, and didn’t realize there was something I could have done.
I didn’t get Susan the help she needed when she battled post-chemo depression.
Something a lot of people don’t know — I didn’t know — is that a lot of people become clinically depressed once they finish chemo. (The American Cancer Society says 25% do .)
Susan certainly did.
It makes perfect sense, really. When you’re undergoing chemo, you have a mission: get through it. Fight cancer by taking chemo. And people tend to rally around you as you do this. But then, once you’re finished with chemo, you’re hit with a perfect storm of depression-causing factors. People ease up on reaching out to you. You’re even more fatigued and sick than you were when you taking chemo. And you have an enormous question mark in your life: did it even work?
In our case, this depression was augmented by factors Susan and I had innocently brought into our life.
First, we were far away from family and most of our friends. I didn’t notice this as much, because I was busy at work and quickly had come to feel comfortable with the people I worked with; the friends I made at Microsoft were truly generous, kind, and supportive. Susan, meanwhile, was at home with the kids…and too tired to go out and do anything.
Second, this beautiful neighborhood we had moved into — Tree Farm — had a problem that never occurred to us while we were house shopping: all these gorgeous trees so thickly crowding our house and yard (I tried several times to count the number of trees on our property and never got the same number twice; there were that many) meant that we never got direct sunlight.
For me, that meant glorious shade and a beautiful view whenever I stepped onto our porch. For Susan, it meant she rarely saw sunlight. When combined with the dark wood and deep colors we painted the inside of our house with, Susan was enveloped in a dark place. Figuratively and literally.
She combatted this, to a degree, with near-constant fires in our fireplaces (our house had two). Not for heat, but for a warm light. She went on short walks on the wooded paths outside our house.
But of course, that didn’t help. Not really.
And worse, I didn’t help. Because I didn’t understand her depression, really. From my perspective, we should both be so happy. Susan had gotten through surgery. She had gotten through chemo. I had a great job. We had a nice house in a beautiful neighborhood.
And of course, I told her all these things, over and over, and she agreed, and felt worse about not being happy with me. She felt ungrateful and tried to cover it up, to feign happiness as I tried to cheer her up and convince her how good we had it.
I feel rotten just thinking about it.
Now, though, I at least sort of understand my huge mistake. And I think I would be better now at helping a spouse (or child or friend) at working with depression. Because now — having learned at least a little from my son — I know at least a few of the basics of having a loved one with depression.
I know, first of all, that as someone lucky enough to have never had a problem with serious depression, that I can’t truly understand or comprehend what it’s like. Just like I can’t comprehend what it’s like to have a broken femur or to have Parkinsons or a host of other things. But I can love and respect people who for whatever reason are living with depression, and I can be supportive and helpful in whatever way they need.
I know it’s not my job to diagnose or “solve” or “cure” someone’s depression, just like it’s not my job to diagnose or cure any other medical issue.
I know that there are professionals who can help better than I can, and that helping find a good professional might be the best way I can help someone I care about.
Mostly, though, I know that there is a ton about depression that I don’t know, and that the right thing for me to do is to listen and learn.
Comment by ScottyCycles | 04.6.2016 | 8:28 am
Thank you for sharing. Depression is all around us but many times I think we are blind to it and just don’t see it in our friends until they either say something or worse happens.
Comment by rich | 04.6.2016 | 8:44 am
Thank you for sharing this. Depression is a huge secret it seems and no one likes to talk about it….which then means those who suffer don’t seek help.
We need to talk about it, bring it in to the light and let those who suffer know they’re not being judged or looked down on. It’s not a weakness it’s a disease….
There seems to be some movement though in the public with public figures bringing it out which gives me hope for those who deal with this in their lives.
Comment by Erica | 04.6.2016 | 8:55 am
Thanks for sharing this message. It is not an easy topic to embark on, I am glad you are willing to take the leap and get it out there.
Comment by ClydeinKS | 04.6.2016 | 8:59 am
Depression (and a multitude of other emotional disorders) sadly still carry a stigma and difficulty opening and sharing without covering the real issue. Until more is shared and discussed an understanding from others remains harder to obtain. Thank you for sharing this post and you ended it so perfectly. As more people are opening and sharing their experiences it gives us great opportunity to listen and learn, and create more ability to assist someone else through the pain, hopefully becoming an umbrella in their storm.
Comment by Mark in Bremerton | 04.6.2016 | 8:59 am
Thanks for sharing, that is hard to do.
I lost my childhood buddy, the one that got me into serious cycling 40 years later, to suicide last year. To try to understand and deal with the loss, I now volunteer at the crisis hot line, answering phones, hopefully giving some help to people in their own struggles with depression or mental illness.
And like you, I regret not taking more action when I saw the signs – they seem so obvious now, and what I could have, should have, done is even more obvious.
Like ScottyCycles said, we are blind to it, because we just don’t understand. Here is a web site that may help people recognize signs of depression and suicide: http://www.suicideispreventable.org.
Comment by chickenbocks | 04.6.2016 | 9:12 am
Sending you love and hugs across the miles, Fatty.
Comment by Eric Finn | 04.6.2016 | 9:29 am
Thanks for publishing this very personal and insightful look inside your world. I know its not easy to open up to the world about such things, but the more people who do it, the less stigma there is associated with it. Kudos to you for both highlighting it and coming across as someone who’s struggled with how to help people. This is one of the more personal posts I’ve read from you and while I know if comes from a dark place, its also one of the best things I think I’ve ever read from you. Keep it up, good sir! I hope that writing about it will prove therapeutic.
Comment by Jenni | 04.6.2016 | 9:30 am
You got me today Fatty. I am sadly, deeply, and traumatically experiencing what you’re going through with learning to understand suicide and depression. A very very close loved one is struggling in the most profoundly upsetting ways I hope no one can ever imagine, and I find myself in the struggle to learn to understand, to understand before it’s too late. My role, their role, science’s role, and the mind’s role. I’ve learned exactly nothing, despite my Herculean attempts to read everything ever written about it.
There is no “should”, and this is where your faith comes in. You didn’t see it because you weren’t meant to see it. You made no mistakes, please don’t be unkind to yourself that way. You did the best that you could do with what you knew, and that is the supreme perfection of the love you had for Susan.
I eulogized my dear friend who I took care of to the end of her battle with cancer. And when I saw her family and friends, their regrets and sadness, I told them, “You were enough. You did enough. And she loved you”. I say the same to you today.
Man, this was a tough one. I am so sorry for your sadness and your loss. I’ll leave you with this- suicide is twice as common as murder in our society. It’s an epidemic, and one I so appreciate you pulling into the light.
Send lots of love your way, and to the way of the family and friends of your friend. I wish I could say I can’t imagine what they’re going through.
Comment by Rob W | 04.6.2016 | 10:01 am
Fatty,
Thanks so much for sharing. Even though I want to understand, I really have no idea what you went through (and what Susan went through). Your writing is descriptive enough to help me feel an inkling of how you felt.
To this day, I have never met you. I look forward to the day that we can meet. I feel I have gotten to know you a little through your blog. I think most people feel like they wished they would have done more for a loved one that passed. My gut tells me, based on years of following your blog, that you did a lot for Susan.
Oh, that we could all be perfect in our service to others. Hind site is 20/20. Can you take some solace in knowing that you did the best you could?
Comment by Joe | 04.6.2016 | 10:10 am
The singer from the band Off With Their Heads (who you may like given what I’ve seen of your taste in music) does a podcast called Anxious and Angry that you might be interested in checking out. He mostly interviews his friends from other bands, but it has a heavy lean towards dealing with mental health issues and he does a great job of getting people to open up in talking about things they’ve struggled with and how they worked through it. Every episode ends with listener submitted questions where he tries to help people find the help they need or be there for a friend or loved one who needs help.
People not into punk music may not find it as enjoyable to listen to because they’ll find themselves learning about bands they’ve never heard of and don’t care about and he also has breaks to play songs on each episode.
Comment by Heidi | 04.6.2016 | 10:29 am
I’m so sorry for the loss of your friend.
Comment by SloKenny | 04.6.2016 | 10:37 am
That shines a light on my wife’s battle with cancer and explains a lot of what happened and why.
If there is something to share, it’s that relationships with your friends and family are important. We all need each other’s support.
Thanks for the read.
Comment by cycingjimbo | 04.6.2016 | 10:57 am
Depression is one of the most difficult things a partner / friend can face because it is a covert and complex set of conditions. A lot of people function at a high level even though seriously depressed, and it is frequently a surprise when we learn of their depression.
I think it is important for the primary care giver to avoid the “If only I had ….” train of thought. Primary care givers are on the front line doing their very best to provide what is needed, and it is not possible to see and do everything. Things are bound to be missed, and I hope you are able to address this in your book without beating yourself up.
I look forward to reading the completed story, and my preorder is in.
Comment by Brian in VA | 04.6.2016 | 11:53 am
Thanks for sharing Fatty. I know it’s not very easy dredging this back up and you have to do it to tell the story.
Depression is one of those deals that those who haven’t had to deal with simply don’t understand.
I do know, from personal experience, that the more you walk through these stories, the better you’ll understand yourself and understanding leads to forgiveness and peace.
Keep looking for peace, sir.
Comment by spaceyace | 04.6.2016 | 12:57 pm
Thank you, thank you, thank you for sharing. That must have been difficult to write.
As someone who has gone through severe depression, and has a close family member who is battling a life-long fight with depression, I want you to know that even those of us who have been through it can have a hard time knowing what the “right” things are to say or do for someone we love. Don’t be too hard on yourself.
It’s a difficult and complicated disease and modern medical science doesn’t have it figured out yet. And stigma is a huge problem. Sharing openly and honestly, as you are doing, is important to make progress.
“…Helping find a good professional might be the best way I can help” is very, very good advice. When you’re in a dark place, mustering the energy to find competent professional help can be an insurmountable task. Also, listening, learning and “just being there” are high on the list. Telling a person with depression that you care and explicitly saying “you’re not a burden. I will always be here for you” is huge.
Sorry for the loss of your friend.
Looking forward to that podcast.
Comment by John Norby | 04.6.2016 | 12:58 pm
Today you got me Eldon. Raw, honest & brave. It’s a life journey to develop awareness, to step outside, listen and forgive. Suicide is just so hard to grok, so painful. I can never get over it. thanks for a great read.
Comment by Tom In NorCal | 04.6.2016 | 2:07 pm
Fatty,
Thanks for being so open and sharing.
I have struggled with depression myself and am helping my wife while she goes through hers, it is such a tough battle. It helps knowing we are not alone in the struggle.
Comment by Skye | 04.6.2016 | 2:20 pm
I second Jenni’s comment wholeheartedly, perhaps a little bit selfishly because that means I also wasn’t in the wrong by not knowing how to help, but even when I take myself out of it I still think she hit the nail on the head. We can’t know everything all the time, and especially knowing how to best help someone else deal with their inner thoughts is a guessing game times ten. You, me, anyone- we did the best we could given the information we had at the time. Its never perfect, but it has to be enough.
Comment by Stuart Dootson | 04.6.2016 | 2:33 pm
Fatty – listening and learning is all you can do. My wife’s suffered from PTSD for (as far as I can tell) most of her adult life, managing to contain and hide it until she felt secure enough to uncage her demons, just after we were married. The weeks, then months and finally years after that have been a real learning curve for me, as she’s gone through her mental hell, before getting the treatment she needed from a wonderful clinical psychologist, gradually getting some semblance of a life back.
Mental illness is much misunderstood thing – the more that people understand that even though there may be no visible symptoms, someone is really suffering, the better.
Comment by Melanie | 04.6.2016 | 3:23 pm
Today’s post hit home very strongly. First, let me say thank you for helping others understand how complex depression can be. I recently lost my father to cancer and I was his primary caregiver. Like you, I question some of my decisions: Could I have done more? Should I have done more? I did a lot for him, but how is one to know what is the right thing?
I struggled heavily with depression after losing him and didn’t share my battle with anyone. I felt no one truly understood. I’m slowly regaining a better frame of mind, but it’s not an easy task.
You did Susan a great service by caring for her and doing all you did for her.
Comment by Lin | 04.6.2016 | 3:41 pm
Thank you, everyone. Fatty, for the post, and readers for your comments. This is powerful stuff. Should be required reading for everyone. <3
Comment by leroy | 04.6.2016 | 10:02 pm
Thank you for writing this. And to those who have shared their stories in the comments, thank you too.
Comment by Shugg McGraw | 04.7.2016 | 3:14 am
Brave stuff – and educational. You’ve been through the fire. My brother-in-law is going through chemo at the moment, I’ll try and take this on board.
Comment by Ferde | 04.7.2016 | 6:50 am
Well said.
Comment by Clydesteve | 04.7.2016 | 9:56 pm
Nicely said, Fatty. Wife & daughter – maybe you have given me some useful insight.
Comment by Tes | 04.8.2016 | 1:17 pm
I’m so sorry for your loss.
This video encourages people to view depression differently. https://www.facebook.com/UpworthyVideo/videos/806056189498930/
Perhaps you can help spread it. I have nothing to do with the video, I just feel it does a great job.
Comment by adina | 04.8.2016 | 2:19 pm
Thanks for this painful and honest post. I have a family member who suffers from severe depression from time to time. When she has “gone dark” and I talk with friends about it, everyone seems to have a loved one who suffers from depression. It is so much more common that I ever knew. You never know which person you meet might be suffering from depression and doing their best to cover it up.
I am very sorry for your loss. I am glad it prompted you to share this post.
Comment by Kelly | 04.8.2016 | 8:26 pm
I was an endurance mtber five weeks out from my longest race when I was dx w a rare cancer. Not only did I have to wrap my head around the dx but surgery and treatment left me unable to ride. When I finally got the all clear to ride, the dramatic decrease in my strength and endurance was extremely depressing. What once gave me such joy now made me frustrated. I soooo miss what I had. Cancer takes so much. And yes, when treatment is finished, others feel you must be cured. In my case, the goal is to keep me in remission as long as possible. Live each day to the fullest, continue to reach out to your friends even when their treatment ends and encourage them to express their thoughts and feelings.
Comment by rb | 04.9.2016 | 5:42 pm
Every time I read one of these excerpts something gets in my eye. And the family asks if I’m alright.
I have a few friends fighting a battle with depression. they share a lot, but I know I don’t really get it. This helps. Hopefully sharing with them will help also.