A lot of people ask me for advice on how they can help their loved ones who have chronic, degenerative or terminal illnesses. They especially want to know what to say, how to talk about illness, and feelings, and fear, and all the awful things. I can’t speak for everyone, but I can offer what I know, what I feel, and how my friends and family have helped me.
There are a lot of ways to respond when a friend with degenerative illness shares with you the latest shitty (and scary and often humiliating) ways that their body is breaking down, or the horrible treatments they endure, or the conversations with doctors that are heavy enough to crush even the most valiant among us. People tend to say things like, “It’s going to be ok.” or “But you look great.” or “Have you tried [some shit I read about on the Internet]?” or “You can beat the odds, and maybe they’ll find a cure…” or at least something that sounds helpful or hopeful.
And it’s hard to know what the fuck to say to someone you care about when shitty things are happening to them, because you want those things to NOT be happening to them. You want to make it better, or at least easier, and you are totally freaked out about saying something wrong. (And we know you love us. We know your hearts grow heavy for us. We don’t talk about the hard stuff often because we love you and don’t want to hurt you either.) But, in that moment, we don’t want to hear that it’s going to be ok. It’s not ok. It won’t ever be ok. And we’ll figure some shit out and adapt. But, in those moments that you manage to get us to talk about it, those times when we don’t gloss over it and change the subject, don’t freak out. Just listen.
Listen to what we say.
And let it be shitty.
Let us be sad or pissed or tired or defeated. We won’t always feel that way. But if we tell you the truth, (the stuff we usually don’t share because we don’t want to bring everybody down all the goddamned time), it’s because we need someone to be with us in that particular shitty moment. Don’t try to make it better. Don’t try to clean it up. It’s messy and awful, and we’re hoping with all of our might that you’ll just be there with us in that moment. It’s a place we usually visit alone.
We stay there for a little while sometimes, and before we can climb out and try again tomorrow, we have to
Our most vulnerable selves are peeking from under the blanket, for the chance that you’ll stay, for the chance that your hearts love our hearts enough to sit in the messy and the awful for just a little while.
It takes a real friend to say, “Well that’s goddamned horrible.” and then pour a drink or make a snack and let us talk, and cry, and laugh that not-really-funny-but-I-don’t-know-how-else-to-cope laugh about how fucking seriously ludicrous it all is.
So, my advice to you and your worried heart is: Stay.
Stay with us in the awful moment. It’s a lonely place and invites to join us there might be rare, but if you get one, please accept.
A letter came today. In the midst of a very trying week, in between conference calls, speaking engagements, and an overstuffed Inbox, it appeared. A letter with the power to calm a worried heart, provide much needed perspective, and offer a reminder of how much we all really need each other. One little letter.
The past few weeks have been disappointing. My neurological disease(s) continue to fuck up my groove, now causing issues my endocrine system. I’m spending more time in hospitals and doctors’ offices than I have in the last two years combined. We are planning and strategizing and preparing for battle. Some days it’s disheartening, frustrating, tiring. Other days, I just slam a gallon of coffee and give it everything I’ve got. (And then I blast “Damn it Feels Good to Be a Gangsta” by the Geto Boys on my car stereo and think, well shit, I’m still here, I still got this, B. This is some serious badassery. I just gotta keep doing what I do as long as I can do it. Because I’m lucky to be here.) So, there are good days, bad days, and everything in between, but generally, it’s been a tough burden to bear. And then…
A letter came.
Across the country, a five year old that I have never met has just come out of another neurosurgery. He has one of the conditions that I have, a tethered spinal cord with syringomyelia. The amount of pain and suffering that this little guy has endured, and will endure, breaks my heart. Through this blog, and a little help from a dear friend, this family in Oregon and I were brought together to support one another. I have a unique advantage in being able to help this little guy’s parents understand symptoms, treatments, prognoses, but also to be a sounding board, to try to offer advice on how to approach treatment options, and to be a source of strength and comfort whenever I can. We write, we speak on the phone, sometimes, we cry together, out of frustration and concern for a really great little kid. Today, this little guy’s dad wrote me a letter.
I won’t post the actual letter here. I want to maintain the privacy of our correspondence. Sometimes, words are too precious to share. What I do want to share is the reason for the letter.
Simply this, that they are grateful to have someone like me help them navigate this journey. That, because of the knowledge I can offer, they can (and have) saved their son additional pain and suffering. That it’s so incredible that a woman they have never met in real life could be so pivotal in helping them fight for their son. They think it might be God. They thanked me for being the messenger.
I cried in a way that I haven’t in a long time.
I don’t believe that I deserve accolades for helping others. I do believe that everything happens for a reason. If I am meant to live this life, with the challenges that I’ve been handed, so that I could make a difference in the life of a wonderful little boy who has his whole life ahead of him, then I accept my fate with *gulp* gratitude. I have always refused to feel sorry for myself. I refuse to be a victim to my condition. Because of what I’ve been through, I have the power to help others. That is worth everything.
A letter came today.
It opened my eyes to the power of reaching out and helping someone just because you can. That letter healed a spot in my heart that I didn’t really know needed mending. It brought me renewed perspective, it brought me some peace. It brought me news of a successful surgery and the hope of relief for a little guy that really needs it.
We need each other, all of us.
I’ll eat you up, I love you so.
I wrote Mustache Love after my daughter told me about being teased for having a “little mustache” at school. Earlier this year, I auditioned for the LTYM Show with the piece, was cast in the show, and am now preparing to unleash the love upon a live audience. Reading over the piece in preparation for the show reminds me of how a little blog post, on a lesser known blog, somehow turned into a movement of inclusion and would inspire a community to come together and stand vigil over a friend in trouble.
It began with a hashtag. My homey, @TheBusBandit, retweeted my blog post and added #MustacheLove to his tweet. The response to the blog post was huge, both on Twitter, on the blog, via email, or in person. So many people showing the hairy-ass love, and sharing their own versions of #MustacheLove. The mustache was different for everyone. For some it was their weight, others, bucked teeth, acne, height, skin color, the list went on and on. Everyone had a “mustache”. Everyone.
#MustacheLove became more than just a blog post. It was a common thread, a right of passage, the act of breaking free of what is “pretty” or “normal” or “handsome” or “good”. It was acceptance. It was courage. It was reminding each other that we’re all okay, just as we are. Because as grown as we are, we still forget sometimes.
Then came the mustaches. They came from everywhere. Mustache jewelry, mustache window clings, mustache pillows, mustache photos, a group of my running buddies ran a route in the shape of a mustache just to make me smile. In 2010, I needed #MustacheLove more than ever. I had two major surgeries, needed to ask for help more than I ever had in my life, and had to come to terms with a very different kind of “normal”. The months after the first surgery brought a roller coaster of highs and lows, emotionally and physically. Three months later, I needed another surgery. I talked a good game, but I was scared, pissed, and tired. I was gaining weight, I walked with a cane due to my deteriorating gait, and I looked sickly and shitty all the time. As much as I knew how to help my daughter deal with self image issues, I started feeling uncomfortable in my own skin. And I knew better, right? Sigh.
Then something happened.
I logged into Twitter the night before my second surgery to find that hundreds of avatars had been slightly altered. There, I found the usual faces of my Twitter feed, with one addition. Each one of them was wearing a mustache. A friend had created a Twibbon that overlaid a wickedawesome mustache over all of their beautiful faces. That night, #gosarago was a trending topic in Milwaukee. It was a glorious mustache vigil that I will never forget.
On Sunday, May 8, 2011, I will read Mustache Love to an audience of hundreds. And it isn’t the same Mustache Love that I wrote almost a year and a half ago. The words are the same, with some small additions and edits, but it feels different. When I talk about the day I made the decision to let my own (impressive, btw) facial hair grow (for 6 months) to show my daughter that good people will love you no mater how hairy (or heavy, or buck toothed, or pigeon toed…) you are, I won’t just be thinking about the good people who will love you in spite of your mustache.
I’ll be thinking of all the people who will wear one for you.
I’ve been struggling with a way to sum up this past year in one perfectly wrapped year-end post, all tied up with ribbons, nice and neat. I’ve begun this post countless times, always trying to find the best way to convey to all of you exactly what this year has been like. I have wanted to share with you how much your love and support (and mustaches) have meant to me this year. But it’s been a complete waste of time. I could never sum up what I have taken away from this year in one pretty post.
This year wasn’t pretty. This year was hard. It rocked me to my core. I am still fighting to reclaim much of who I once was, rebuilding pieces of who I want to be, and learning to make peace with the loss of things I can’t get back. Throughout this year, I felt an incredible range of emotions, from anger and fear, to acceptance and gratitude. The one thing I never felt was alone. In so many different ways, your tweets, your emails, your offers to help, your prayers, hugs and smiles, you guys helped me navigate through this year with hope and gratitude, and some days, maybe, just a little bit of grace.
Some of you, and you know who you are, sat at my bedside and held my hand. Others held my children, and made sure my family was fed. Some of you, without being asked, just kept showing up. It is something I will never forget, and those acts of kindness will shape the way my children live their lives and how they treat others. We are forever changed because once upon a time, a girl fell down, and an entire community came together to pick her up, dust her off, and carry her awhile until she could walk on her own.
I cannot think of any words of my own to express what I feel when I think back on this year. More than anything else, the thing that resonates most was more than just never feeling alone. You made me feel protected. Protected. That’s huge. It meant more to me than you could possibly know. There were times when it was harder than normal to pick myself up and get through one more treatment, one more hospital stay, one more fucking MRI. It’s those moments that I don’t talk about. I don’t tweet about them. Those are the moments that I have to dig deep. I have to forgive myself for feeling so weak, so sad. I have to pull it all back together and remember that my life is beautiful, even if this moment is not. I remember earlier this year, sitting in the quiet, listening to this song, it made me think of all of you. Loving me, protecting me, never letting me stand alone, and I thought, “This is going to be okay.” You did that. I am forever grateful.
Timshel, Mumford and Sons
Thank you, for everything. I’ll eat you up, I love you so.
For a long time I have been trying to figure out how to explain how it feels live with chronic illness. Every time I do, I wind up pissed, and sad, and to be honest, I just don’t want to talk about it any more. Most people want me to say that I’m doing super, just really, really super(!). I get a lot of “Are you all fixed up now?” They want me to say yes. If I don’t say yes, they are confused and maybe even upset. “But you had brain surgery! Didn’t that fix you?” Most times I just say, “Sure. All fixed.”
But it doesn’t work that way.
The goal of treatment for Chiari Malformation, Syringomyelia, and Tethered Cord Syndrome is to stop the advancement of deterioration and nerve damage, to try to decrease frequency and severity of pain, and try to achieve a better quality of life. It’s not something that can be fixed, per se, it’s a condition that can be treated, with varying success rates. My surgery and treatment was only partially successful, and I continue to progress. The problem with that explanation is that it bums people out, apparently. Then I find myself feeling like I need to make them feel better about it. So I make jokes. They laugh. Everybody moves along. This happens over and over. I explain it, people get all bummed out, I crack jokes. Except some days, there’s nothing funny about it. And I get tired of making other people feel better about my condition.
So, today I want to tell you that it is perfectly okay with me that my life might be harder than yours. This body is not perfect, but it is still here. It produced my life’s great work, my daughters. As long as I am here to be their mom, and to be Augie’s wife, I will respect this body, and I will not dishonor it by feeling sorry for myself. Every single day that I live, the good and the bad, there is someone who would give anything to have that day. There are people, some, heartbreakingly young, fighting for their lives every day. Some of them will not see tomorrow. When you feel like you need to pity me, please think of them, and re-think how you look at your day. I am not fixable, and yet I am sincerely grateful to be here. Please be grateful with me. Please try to understand that any improvement from my treatment, no matter how small, is a miracle to me.
If you see me falter when I walk, offer me your hand. If I cannot recall the name of something, offer a suggestion. If I cannot be with you because I am in pain, offer me your understanding. If I am feeling overwhelmed, and tired, and sad, offer me a beer and a kleenex, and for god’s sake, make me laugh until I pee my pants.
Just don’t feel sorry for me.
I spent a long time hiding all of this from all of you. I’m tired. I want to be me, just as I am. I just don’t want you to be all bummed out about it, mmmmkay? I don’t know exactly what the years will bring for me. I do know that I’m not going to sit around worrying about it. Whatever this body has in store for me, I’m ready to figure out how to work with it. It will very likely be totally fucking awesome.
So that’s it. I promise to be brave, if you promise to be okay with all of this, be okay with me, just as I am, unfixable (and unstoppable, suckas!). Wut.
And also, I’ll eat you up, I love you so.