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’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.
Whoa, brah. Dial it back a second. Don’t confuse the term “beer snob” with the term “douche bag”.
As many of my 13 readers know, I am somewhat of an authority on douchebaggery. After all, my mission in life is to stamp out douche-y behavior whenever I encounter it. What Wagner describes in his post is clearly super-douche behavior.
And I totally agree with him.
Why does anyone care what kind of beverage anyone else drinks anyway? How totally weird is that? (Very.) When someone walks into a bar and acts like a know-it-all asshat, it’s clearly done in an attempt to look special, or wicked-awesome, or… something. Sadly, it’s pretty lame and douche-y. THAT is not a beer snob. THAT is just a plain old douche bag. (Related: It’s totally ok to want to kick those people in the nards. I’m not encouraging you to do that. I’m just saying, it’s ok to feel like you want to. We all do.)
I am a self-proclaimed beer snob. I enjoy craft beer. I enjoy the amazing aromas and flavors that have been created by people who imagined a new combination of malts, hops, yeasts and spices and just said, “Fuck it, let’s give it a go then…” I enjoy beer in the same way I enjoy great food. Most real beer snobs do. We bear the title with a lot of love for delicious brew and a little bit of humor. We don’t really take ourselves that seriously, we just like beer.
That being said, anyone who knows me knows that I am a champion of the Pabst Blue Ribbon Tall Boy. *genuflects* I like it. In fact, I can dig the original recipe Schlitz too. I don’t enjoy Budweiser or Miller Lite, however, I do find a shorty High Life acceptable (meh) as a bloody mary chaser. (It is the champagne of beers, after all.)
So Andrew, I’d like to buy you a Schlitz. I’d like to have a few laughs over a few brews and show you what real beer snobs are like. I think you’ll like us when you get to know us, and there are advantages to having beer snobs for friends — we’ve always got cold beer in the fridge. ;)
Two weeks ago, I was sitting in a surgical waiting room wondering if I could possibly be losing the love of my life.
The nurses were sweet. Too nice. I hated that. I know which wives get special treatment. The ones that the nurses feel sorry for. The ones whose husbands are really, really sick. I didn’t want their coffee, food, water, or their warm blanket or their offer to sit with me until the surgeons came out. There were too many hugs. That’s not normal. I didn’t want any of it. I wanted them to be irritated that I was even a little bit worried. I wanted them to blow me off with a “This happens every day, Sugar. Now, you just have a seat and everything will be just fine.” I wanted to be anywhere but sitting in that chair, pretending that I wasn’t ready to crumble into a heap on the floor.
Two weeks ago, I rushed Augie to the emergency room. Two weeks ago, he was down to less than half his normal blood volume. Two weeks ago, no one had any idea where he was bleeding. Two weeks ago, doctors used words like severe hemorrhaging and possible malignancies. Two weeks ago, doctors sat in front of me and “wished they could give me a definitive answer”.
In the last two weeks, a team of physicians and nurses have worked to stabilize my husband and give us back some piece of mind. While we aren’t 100% there yet, Augie is on the road to recovery from this episode, and we are closer to determining the exact cause of his condition. He’s weak and beat up, but I have him back. That’s all that matters to me.
I did realize, throughout all of this, how lucky I am. I don’t need a medical emergency to appreciate my husband, to appreciate the health of my family. I consciously treasure that every day. I didn’t have to waste any time in that waiting room wondering if I show my husband enough love, or compiling a list of regrets for things unsaid or undone if I did lose him. I was able to concentrate on the only task on my to-do list as of that day:
I AM GOING TO GET HIM WELL. NO MATTER WHAT IT TAKES.
I was in full strategic planning mode. I hired and fired doctors in the space of a week. I pissed off more nurses than I can count. My only job was to be the best advocate for his care that I could be. He was weak and sedated a lot. I had to buck up, put on the “medical mustache” and orchestrate a brilliant recovery. I was equal to the task. Why? Because I love that man so fucking much. That’s why.
Augie is home now, resting and healing and ready to continue treatment. I am grateful and thankful to wake up to his face every morning.
Something else happened in the last few weeks.
So many people in our lives have quietly and lovingly come forward and supported us in some amazing ways. There are far too many to name here. Our family and friends jumped in to take over childcare, carpooling, meal planning, and carried out “Operation Keep Augie Smiling” and “Operation Make Sure Sara Doesn’t Fall Apart” with expert skill. My mother in law took charge of the girls. My mom jumped on a plane without blinking an eye. My siblings and neighbors took care of our home and our pets. My work family jumped in to make sure that my clients never felt a thing and simultaneously supported us emotionally throughout all of this. (I even had a “Director of Sara’s Nutrition” appointed.) Our Twitter family wrapped their arms around us with gifts and meals and visits and hugs (virtual and IRL). My dailymile training buddies were incredibly supportive, and continue to support me as I ramp back into a normal life and running routine. Meals have been dropped off, groceries and gifts were delivered, our kids have been doted on and distracted. But the most important thing we received throughout this: L-O-V-E. We are loved. That is the greatest gift we have ever, will ever receive.
From the most honest and vulnerable place in my heart, thank you.
The greatest thing
You’ll ever learn
Is just to love
And be loved
I enjoy a good mustache. I know I’m not alone in this. You all know it. A really bad ‘stache is really, really funny. If a particular mustachioed gentleman is a giant douche, I blame it on the mustache. If a circus ringmaster has no mustache, he loses all cred. A hard-ass, Harley riding, roadhouse regular m’erf’er without a mustache? Harder to spot than a purple unicorn. Femme-stache, nuff said. The mustache is more than facial hair preference. It’s a way of life. And it’s funny.
Okay, so recently, I have found myself in a mustache dilemma that isn’t so funny. For many ladies, especially us dark haired girls, taking care of our unwanted facial hair is a right of passage. At some point, usually in our teens, we realize that our eyebrows are a little unruly, or that dainty peach fuzz above our lip is looking more like a 15 year old boy’s than a 17 year old girl’s. We begin the life long ritual of waxing, plucking, or (good gawd) laser removal. It’s life, no biggie. I have two girls, I thought I’d be ready for the day that one of them came to me with concerns about their little Latina ‘staches and Brooke Shields brows. I just always figured this was a Jr. High kind of conversation.
Grace is six years old. Last week she complained that she has, “A little mustache.” She looked oh-so-forlorn and continued, “ …and I really don’t like it.” So. Yeah. Wasn’t ready for the Kindergartener to lay that one on me. (And believe me, what this kid’s got is nothing! Sheeesh!) So, where did this come from? How is she so self-aware at age 6? I was a complete idiot at 6. My mother had to remind me to comb my hair before running out the door to catch the morning bus. I couldn’t have cared less about matching clothes or wearing glasses. I was a happy 6 year old idiot, and life was good.
Now, the concerns I began having at 15 are troubling my kid at 6. What do I do? Do I let her foray into this grown up world of vanity and excessive grooming? Hell no. For a few reasons:
- Dealing with your own physical uniqueness is part of growing up. This is how we are made. All little 6 year old Latina beauties should have tiny baby ‘staches and wicked-awesome eyebrows. It’s beautiful.
- If we teach our kids at an early age that if they don’t like something about themselves they should hurry up and change it, what kind of message are we sending? (Hint: A crappy one.)
- I wouldn’t be the woman I am today if my mother hadn’t taught me to settle for the Shopko clearance plastic glasses, (it’s what we could afford and it served it’s purpose – I could see the chalkboard), home perms at the kitchen table, and last year’s hand-me-downs. I wasn’t a cool kid. I wasn’t a pretty, best dressed, most popular kid. BUT. I was a decent kid, a good friend, and an honor student. I learned early that there is more to a person than the way they look. My best friends from age 12 are my best friends today. Score one for the mustache.
- Today, more than ever, I want my girls to love themselves, love the bodies God gave them, and be proud of their uniqueness. I want them to have a strong sense of self worth, a strong sense of heritage, and the confidence to become whatever the heck they want.
I’m here today say that the mustache might help my save my kids’ childhood. I’m learning new respect for the mustache. And this is my plan:
In a show of solidarity to my mamitas lindas, I am going to put my facial hair grooming regimen on an indefinite hiatus. Yes, ladies and gentlemen, I am going to take this opportunity to show my girls that you can be beautiful and different, and, well, hairy — all at the same time.
So, if you run into me in the coming months and I am rockin’ a wicked peach fuzz, or you happen to notice that my unibrow seems to be creeping into my hairline…give me some props, make sure my kids hear you. Show us some hairy-ass love.
And if you think I’m nuts, and judge me for my new, au naturel look, don’t worry, I’ll chalk it up to mustache envy.