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While thinking of the best way to say thank you to the amazing people who came to help me in a time of need, it occurred to me that what I had to be thankful for was bigger than I thought. Not only did a community come together to help a friend, but through their generosity and kindness, they put something even more beautiful into the world. Something that will ultimately change more lives than one.

I’ve always believed that a single act of kindness could live well beyond that one act. That act, no matter how big or how small, becomes a spark of generosity that brings out the best in everyone it touches. It can be left to fade away, or it can find a place in people’s hearts and grow into something brighter. In time, that spark can become something much bigger, and it can live forever.

Whether you perform an act of kindness, receive kindness and generosity from others, or bear witness to other people giving of themselves, you can choose to be part of keeping that spark alive. There are people who think that many of the overwhelming challenges that some people face are too great to overcome. They figure one small act of giving won’t make a difference anyway. Some people give up ever even trying altogether. What they didn’t figure is that one day they may feel like something is missing from their lives. They might try to fill that empty feeling with money, fancypants things, or excuses. The truth is, the only way for them to get what they need to fill that void is to remember how to give. Giving of yourself makes your heart whole again. Basically, what I’m trying to say is that a single act of kindness and generosity, no matter how small, can change lives, give hope, and inspire others to take that spark and ignite something incredible.

This is a story of one woman who needed a spark of hope, just a glimmer of brighter days ahead. Instead, I was showered in an act of kindness that could light the night sky.

Not so long ago, I blogged freely about my neurological challenges. Just before my trip to Mayo Clinic in 2011, the progression of my condition began to accelerate. I found myself in increased pain, neuro-related symptoms, and periods of significant mobility deficit. When I began to notice the beginning of cognitive changes and episodes of memory loss, one of my neurologists insisted on a new EEG. Fucking epilepsy. (For fuck’s sake.) That’s when I stopped writing about all my medical bullshit. These changes were happening too fast for me. I was trying hard to accept the new challenges, and I spent most of my energy hiding my symptoms from the public eye. I had gotten very good at hiding it. Still, many plans were cancelled, many meetings rescheduled, and some days I would work out of my home so no one would have to see me at my worst. I guess I felt that if I shared what was happening, it would make it all very (too) real for me. I wasn’t ready for that yet. Plus, complaining about my shit when everyone has their own shit to go through makes me feel like an asshole.

It took many months for me to make a decision about applying for a service dog. Every time I considered filling out the application, I’d convince myself that I didn’t need it, that I could handle everything on my own, that I was stronger than my disease. It took a long time to decide to do it, but some very good friends reminded me that accepting help is another form of strength. If I do everything in my power to keep myself active and safe, then I win. Then I’m still stronger than my disease. It also gives me the opportunity to show my children that it’s okay to accept help when you really need it, and that everyone needs help sometimes. If you let your pride get in the way, nobody wins.

Due to all of this neurological fuckery, we budget a significant amount of our income to my medical care. We’ve always managed to take care of this expense by carefully managing our finances and tightening our belts, so to speak. Unfortunately, a service dog was not something that we could fit into our budget. Asking for help was uncomfortable, to say the least. When I sent an email to my family and closest family friends, my stomach was in knots. When my friends Kate Barrie, Amy Kant, and Mare Aehlich wanted to fundraise for a service dog, it took me some time to be ok with it. It was their encouragement and support that got me to stop feeling like I was going to barf at the thought of letting everyone know how my condition had progressed. So, on Sunday October 15th, I agreed to let them do whatever it was they had up their sleeves.

On Monday October 16th, I was texted a link to a “Sara’s Sidekick” fundraising campaign on IndieGoGo, and I actually lost my breath for a moment. The fundraising amount kept growing higher, and the words of encouragement and love were overwhelming. Once the fundraising goal had been reached, people kept giving to help other disabled people receive a service dog. I cried. No, I sobbed. (I’m talking big time ugly cry, y’all. Big. Time.) And so, I wanted to share my story with all of you, and try my best to thank the people who helped make all of this happen, even though it is sure to fall short.

To The Amazing People Who So Generously Donated Towards a Service Dog:

To say that I am grateful for your support and generosity (not only for me, but for other people who need assistance) is a gross understatement. I am so fortunate to have such amazing people in my life. I am overwhelmed and humbled. I will never find words to express my gratitude properly, so I’ll do so by carrying the spark you all have created and passing it on to other people who find themselves needing a little help, and I’m grateful for that too. With all of my heart, thank you. xo

To Kate, Amy, & Mare:

The three of you already know how much I adore you. You all inspire me to be better every day. Your unwavering support and friendship is such an incredible gift, one that I never take for granted. The spark you lit has already grown into something amazing. Thank you. I love you. xo

I love you turkeys. All you turkeys.

As ever,

Sara

P.S. I know this post was super long. Sorry. (Not sorry.) You were like, “Oh shit, she’s getting all sentimental and serious again. I should pee and grab a snack before I start reading.” which was quickly followed by, “What the fuck is she even talking about?” and topped off with, “Gross.” I’m totally ok with all of that.

P.P.S. I’ll eat you up, I love you so.

P.P.S. This is my favorite band, (and one of the greatest songwriters, Guy Garvey) singing a song that makes me think of all of you. Thank you for always receiving me with open arms. Thank you for loving me. Thank you for letting my sense of ‘home’ take up residence in your hearts.

On Sunday May 8th, I will bring Mustache Love to The Barrymore Theater in Madison, Wisconsin as part of the Listen To Your Mother Show.

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.

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.

There are a million and one reasons that I am thankful for my children every day. One of those reasons keeps itself firmly situated in the forefront of my thoughts.

I was one of those kids that desperately wanted to grow up too fast. I always wanted to be older, wiser, hang out with the “big kids”. I started babysitting at 10 to make “my own money”, then started “really” working at age 14 (Larsen’s Bakery) and didn’t stop working until I quit my job to stay home with Gracie. I graduated from high school early, I packed 18 credits into my college semesters to graduate and get a good job. I got married at 22. I had my first child at 26. I have a mortgage, a Last Will, life insurance, an IRA and a decent and well-balanced investment portfolio. My children have savings accounts and college funds. I have appointed an executor for my will, and I have planned a trust fund and appointed guardianship of my children in case something happens to Augie and me. Sometimes (gulp) I worry about retirement.

This is how my brain works. I worry, then I plan, then I worry, then I plan. My worrying keeps me planning and my planning keeps us “safe”. (Ever heard of the term “magical thinking”? That’s me.) All of this is a big part of who I am. For awhile, this part of me dominated my life, dominated my thoughts, and dominated the thought that went into choices I made. Now, there is an upside to this, I am very organized when it comes to budgeting and running my household, and it does comfort me to know that my children will be taken care of in the manner that I wish for them in the event of a terrible accident or something…BUT every once in awhile I wonder how the “other half” lives, you know, people who don’t worry the way I do, the people that really live for the day and don’t let worrying about tomorrow creep into their thoughts. They seem really happy a lot of the time don’t they? Do they have it all figured out? Is that the way to live and to hell with tomorrow? Am I in need of anxiety medication here? OR Are they irresponsible? Don’t they owe it to their children to plan for the unknown? Will they wind up drowning in “life for the day” credit card debt? I don’t know. I suspect there is just a happy balance to find. A balance that allows for responsible planning AND living in the moment every day.

This brings me back to my original thought. One of the many reasons I am so thankful for my girls.

Because of them I have been given an opportunity to go back to the beginning and experience growing up all over again, by watching them do it. Not just watching, but laughing, jumping, exploring, asking, singing, tickling, crying, drawing, painting, you name it, right along with them. I have re-learned to love so many childhood joys; animals, springtime, sprinklers, snow, airplanes flying overhead, clock towers that you can see from the freeway, huge piles of apples at the grocery store, the lady who gives out free cookies at the bakery, dogs. Gracie makes me see things differently and I love her for it. My kids may never know that one of the greatest gifts they have to give me is sharing their childhood with me. One of the many gifts I am committed to giving them is making sure they don’t try to grow up too fast. To make sure they spend as much time as they want just being kids.

© Sara 2006

I like to buy things from IKEA because their selection is typically affordable and generally fits in my smallish type of home. I hate to buy things from IKEA because I typically hate being around a thousand people that generally get on my f#%king nerves. Jennie and I did the IKEA run today and I was reminded of how much I really hate people. I just do. Don’t get me wrong, I love many people (individually), but I also hate many people (all together in a big f#%king idiot mob). Okay, sorry, I’m not myself right now. I just spent way too much time inching my way through three floors of Scandinavian particle board. Oh, and about 73 thousand other people. Alright, it’s really not “people” I hate, it’s the crowds I hate. So in all fairness, I am sorry “Mrs. Man Hands” for not helping you at the self-checkout. (okay, but with those mitts, you should have been golden.) I apologize, “Skinny Girl who bumped into my sister and didn’t say she was sorry”, for shooting you that rude glance/eye roll. (Hey, I get cranky when I haven’t eaten too – and I figure you’re probably still going on the Diet Coke and half of a crouton you decided not to purge on Thursday.) Forgive me, “Ladies with matching black velour track suits” for not answering your question about which line to stand in for the manager’s lunch special. (I realize you may have just overshot Great America and didn’t expect to be making such complex lunching decisions.) And finally, “Woman with lots of money and no brains who brought your 2 week old (if that) newborn to IKEA” – I’m actually not sorry for quietly ridiculing your poor judgment in bringing a tiny newborn to a place like IKEA, but I am sorry that your kid’s brand-spankin-new immune system had to be exposed to 73 thousand germs. I am also sorry that every time I saw you, that poor, tiny baby was crying. Yeah, I’m pretty sure I do actually hate you… I’m not usually this surly, which brings me to the other thing I wanted to talk about. After the birth of each of my girls I was (am currently being) overtaken by a severe case of “post-partum can’t f#%king stop swearing syndrome”. I can’t stop it. I manage to censor myself around Gracie, but dammit, I’m out of control. I’ve tried to substitute, but sometimes you just have to say it. Out loud. With feeling. You might even need to yell it. It just, well, fuck, you know what I mean.

© Sara 2006

Stick around. It’s going to get wacky.