What I learned in 2015

With alarming quickness this year has come and gone. In 2015 I entered into the second quarter century of my life, began working in the non-profit sector with remarkable individuals, and became a wife. A few things I learned along the way...

I learned that sisters do not have to share the same parents. You can be fortunate to find  friends so dear that you look to them as family. The label of a friend is not nearly momentous enough. I also learned I'll be gaining a brother this upcoming September, and he has already given our family such love.

I learned that spanx work wonders when you're wearing an ivory gown, navy blue cowboy boots make fine footwear for a wedding, edible favors are the best favors, and whiskey and beer beat an extensive bar list for the right crowd. 

Two words: Vegan Chili. 

I learned that there remains in me, despite my knowing better, a fixation with the illusion of perfection. Maybe because perfection is celebrated and applauded. As a people, we flock to what is beautiful and pristine. And together.  We are drawn to people that present an air of ease, pride, and confidence.  But, we only see a small part of the picture. The Facebook version of our existence is a dreadfully unrealistic one. And we see what we choose to see.  I have learned it is a worthy undertaking to see the wholeness in us through the broken glass. The beauty in our fragile state, and the love that seeps from our words and deeds.  The unkempt homes, unconventional relationships, anxieties, and extra pounds. The poor self esteem, problematic skin, unforeseen challenges, and burdens. When we stop comparing, the only thing left is the right thing. We are already enough.

I learned Basic Sign Language, and how to communicate with individuals who are both deaf and blind, using tactile signing. In my ignorance I had not known someone could be both deaf and blind as I had never experienced it before. I also work with individuals who have intellectual and developmental disabilities, complex medical and behavioral support needs, or a combination of disabilities.  These individuals have interests like you or I, give back to the community, and hold jobs. They wrap presents for inclusion, make decor for holiday parties, pack lunches, attend mass, and sing Christmas carols. They have inspired me in a formative way, and not because I look at them as lesser, but rather because we live in a world that is geared towards those with access to all of their senses and a range of abilities. Regardless of barriers to participation, these individuals are vital members of their communities, they contribute, and they deserve every opportunity any other person is afforded. It is our duty as a civilization to ensure access to these opportunities for everyone, regardless of the differences that divide us. These peers of mine have taught me more than most able bodied and able minded ever will.  Now look me in the eye, and tell me this is not their power. 

If you have any interest in supporting quality programs for these individuals, I welcome you to make a contribution to our Holiday Campaign. 

I learned that when I am critical of myself it overflows into my judgement of others. I judge more harshly and peer with critical eyes when I am feeling inadequate; maybe this is a survival mechanism. If I am in a deep well, I am pulling someone else down with me? But what I have learned is It would be fortuitous for everyone to begin with self love and acceptance.  When we are in touch with our worth, it is easier to accept others.  They deserve our best. And we do too.

I learned what it feels like to be on screen thanks to the timeless craftsmanship of Shane Kress. And what it is to have my written work shared on a larger scale than this digital space of mine

We celebrated our reception in an charming, historic mansion: The Oakeside. 

I learned that a state of mind has very little to do with the state of affairs. Inwardly we can be in shambles, yet to others we seem typical and unfazed. I also know that having everything from a tangible perspective does not correlate to peace of mind.

It is ok to be pleased with an uncomplicated life, to relish in the simple. To look the rat race in the face and say NO, I am not going to participate no matter how alluring the cheese smells. 

All cakes, favors, planning, and venue decor by 2SweetLLC.

I learned that the most vulnerable, the cast out, and the people who are last in line are the keepers of what is important.   

I felt what it was like for time to be suspended for a day. I walked down an aisle in a quaint Franciscan church before my family, friends and the heavenly Father himself, and walked away from the altar a wife. 

I developed a taste for Rum punch, leapt off a cliff in Jamaica, and had my very first massage. I also had my second massage. It was a good year indeed.

I said good bye to two women who were fighters to the very end. They looked pain and uncertainly in the brutal face, undeterred, and lived fully until their last breaths. I learned that when we confront sorrow, a hard shell develops so we can cope with what we experience. This does not cast out our compassion, but rather ensures that after we experience pain we can still wake up and face another day with courage. I learned how truly trivial a majority of our worries can be. I learned to be a little tougher like my sister. 

I learned that if all else fails to take a deep breath, followed immediately by a bubble bath with a bath bomb from Lush. 

Pie Crust Cookies and the Other OCD

When I was around eight years old, I sat in the office of my elementary school counselor's office and he told me I was trying to force adult files into my child-sized filing cabinet. While it wasn't a technical explanation or diagnosis, it gave me a greater understanding of what was happening in my head. I could not sort through complicated concepts without obsessing over their implications. I was fixated on nightmarish topics of harm, violence, and imprudence seemingly all the time. Why should an eight year old be burdened with this material, I often wondered. I cried, and cried often. I was longing to make it through the day unimpeded by what was happening in the confines of my mind, but somehow the fear always overcame me. Fear of what could happen to me, what could happen to loved ones, fear of what harm people are capable of. Eventually they called it OCD. Who would have thought? 

Pure obsessional OCD is rather obscure, marked by intrusive imagery and mental obsessions not accompanied by the physical compulsions that shape the understanding most have of Obsessive Compulsive Disorder. While the content matter of the thought patterns may vary from person to person, recurring topics of harm, religious blasphemy, loss of control, impropriety, sexuality, and anything that the person finds reprehensible, dirty, or “bad” are common. Like a record on a loop, it plays on and on, anxiety growing with each rotation. The doubt is pervasive. Doubting one's character, intentions, goodness, and worthiness are common. A cloud of irrational fears mercilessly feasts on your vulnerabilities. The song just keeps playing. 

Research shows that pure O is so anxiety provoking because individuals who have the condition are among the least likely to act on the thoughts they experience. These individuals are gentle and kind, which is why the subject matter of intrusions is so repugnant and bothersome. Externally, there are few indicators of Pure Obsessional OCD; it's quite invisible. My mother always tells me I look like I am immersed in thought, my brow furrowed in concern. As a society, we rely on what people reveal about their conditions, and thus much goes undisclosed. I think people rarely talk about Pure O because it is embarrassing and stigmatized. There is a level of shame and guilt associated with having thoughts of this kind. Therapists call it thought-reality fusion, or believing these fleeting thoughts mean you will do something bad, act out, hurt another person. Rest assured, it is an anxiety disorder and not a matter of impulse control. While I cannot speak for all, the way I find solace from the intrusions is with a healthy dose of distraction, physical activity, repetitive mantras, and cognitive behavioral therapy. From experience, I have seen that the worst habit is engaging with or trying to suppress the thoughts; suppression does not readily happen. Tell yourself not to think of something and believe me, it is sure to be the only thing on your mind. 

Sometimes I feel as if I burden those closest to me because I crave reassurance to explain away the dissonance in my mind. I ask if "everything is ok" and I ask them often, embarrassingly often. Sometimes they enable me and answer, yes, that "everything is ok". They see how desperately I need them to say just that. Other times they force me to rely on myself, to embrace the discomfort, to reside with what frightens me most, which in the long run is more helpful. Regardless, I've come to realize that nothing is ever really ok, and that in and of itself, is well, ok.

To Prepare Savory Pie Crust Cookies:

• Preheat your oven to 350 degrees. 
• Prepare one batch of your favorite pie crust. Store-bought works just fine as well. Roll out your crust to roughly 1/4 inch thick. Using your favorite cookie cutters, cut out desired shapes and sizes. Place on a greased cookie sheet.
• Meanwhile, combine 1 cup freshly grated Parmesan cheese, 1/4 cup fresh chopped parsley, salt and pepper to taste.
• Brush your pie crust cutouts with egg wash. (I typically beat one egg and combine with 2 tablespoons of water.)
• Gently press cheese and parsley mixture onto each cookie until generously covered. Bake for 12 minutes or until crisp and golden. 
• Serve with a dipping bowl of marinara sauce. 

One Whole Pie

Equity is a concept always prevalent in my mind, but recently moreso. In just this past few months I transitioned from working for the wealthiest of people in the catering industry, to some of the most marginalized - adults with disabilities, in the non-profit sector. I had experiences with young people with intellectual and developmental disabilities as a student participant in Best Buddies at Georgetown University. The individuals I encountered were spirited, engaged, and shared their infectious joy so willingly and without conditions. This change in work would be a welcome one; I was certain I would be well equipped and thrive. 

 I reported to my new position with images from Best Buddies of happiness, inclusion and youth in my mind. I was granted the chance to combine my love of service with my strategic and entrepreneurial skills. This union had been a goal of mine since graduating from a Jesuit institution that instilled a personal urgency to place service well before myself. It was finally coming together. 

My initial reactions were different than I anticipated. There I was arrogantly believing I would have every answer, flourish in my role, and adapt with ease to this new opportunity. I met some of the individuals the organization supports on my first day and had difficulty communicating. I was discouraged. How would I bridge the gap that significant barriers and impairments have placed between us? How can this be fair?  My mind began to wander, panic ensued, and I felt helpness. I was not familiar with atypical behaviors as I hadn't experienced them in abundance before. My ignorance was manifesting as sorrow. I was saddened by what I perceived to be an unfortunate circumstance, to be an adult with multiple disabilities, to be entirely nonverbal, to be deaf as well as blind. I labeled reliance on other people as some sort of tragedy, my own ableist prejudice clouding my vision. As much as I would like to deny that prejudice exists, it does exist. Our society all too often reinforces it; just pick up a magazine or watch the news. Differences are not publicized. Instead we strive for beauty, sameness, and the predictable. Whatever is typical and safe.  From this vantage point, I saw only the negatives and the can'ts. Gone were the images of youthful students participating in activities on Healy Lawn at Georgetown, grilling hamburgers, singing karaoke. This was unlike anything I could have expected. 

In the days that followed, I got immersed in the lives of the individuals we support. I asked for help, figured out how to communicate, and asked endless questions. I read articles, watched publicized talks, consulted my priest, bought books, and interviewed my peers. I extended my hands and opened my heart. I am embarassed to say that for a brief moment my heart, in a well-intentioned fashion, was closing me off to all the possibility in the situation. I learned basic Sign Language, I broadened my understanding of developmental disabilities, intellectual disabilities, and deafblindness, and became educated on how to handle potentially difficult situations.

My unfounded fears became knowledge, my sadness and misguided compassion became power.

People I encountered, my now role models, told me that there is no right or wrong: disability is neutral. We just learn as we go, and help to ensure the best possible outcomes. We embrace that every human being experiences the world in a different way. 

Unrealistically so, I decided in my mind a long time ago I would never be able to work with truly vulnerable people, in nursing homes, shelters, or hospitals. I told myself I was too sensitive, and these experiences would undo me. All along, I was making assumptions about the vulnerable's quality of life. It was not premeditated malice, more likely it was automatic - cultural norms forming the basis of my understanding of the world. This reasoning grounded in emotion was damaging and it skewed my perceptions. I transformed my discomfort with inequity to faith in diversity. I've seen firsthand that sadness is debilitating and helps noone. The same goes for pity. Hope however, hope begets action. Compassion. Compassion sparks change and inspires inclusion.  

I've stopped trying to fix things in my mind. Fixing doesn't readily happen. Through my daily encounters, my belief is affirmed that anything worth truly having would be available to everyone. There are no conditions for fitness or value.  A prestigious job, lavish home, an abundance of friends, self reliance, and beautiful possessions while all appealing are not prerequisites for worthiness. The sum of our things does not equate to worth as human beings. or we would be human havings. Alas, our only requirment is to be. 

We are all equal parts of one societal whole. I conceptualize in food so I am envisioning this abundant pie, bursting with tender apples. We all reside as parts of this pie, slices if you will. No one person is truly self-sufficient, and if we perceive that we are, we are mistaken. It is our interdependence that makes us whole. Not strength, nor power, nor wealth.

I no longer believe that reliance on support is a tragedy. I think reliance enhances our compassion, and broadens our connections as a people.  Together we are an intricate whole. A perfect pie.          

I no longer feel like we deseve a gold star or pats on the back for being decent human beings. I no longer believe in patronizing behavior. While I always knew the individuals I met in Best Buddies were serving me far more than I was serving them, this understanding has been dramatically expanded in light of my recent experiences. Individuals that we all too easily dismiss have taught me these lessons. They have reaffirmed that love is the only currency worth measuring. To me that is true power.  
The most vulnerable among us enable those all too often distracted to see that simply being is enough.

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I have furthered my understanding in writings, talks, and the wisdom of others. Here are some resources I highly recommend...

This book, by a teacher from my high school. I discovered his work through my research, and was overjoyed to make this connection. 

This article, by a woman who has dedicated her life to empowering individuals with intellectual and developmental disabilities. 

This TedTalk about acknowledging that our speech may stigmatize disability, breed judgment, and divide us.  

If you found any glimmer of truth or comfort in this piece, follow along with our organizational progress here, and to donate to our mission, join us here.  

Anxious

She is a vicious little SOB. Anxiety that is. Unwavering in her pursuit to knock you down and make you feel small. She feasts on your insecurities and takes great joy in breaking you until the web of rushing concepts that used to be your brain is exhausted, irrational and dismayed. At its core, anxiety is fear, or at least I think she is. A fear of something we may not even be able to identify. A fear of not being good enough, a fear of not loving yourself, or not being worthy of others' love. A fear that you're squandering away this one special life that you have been given because your mind is preventing you from any productive action. You're immobilized. A numbing feeling sets in, as if you're broken but not necessarily sure how to remedy said brokenness. 

You want to find the right reassurance, the perfect string of consoling words, a helping hand or some sense of tangible progress. You all too quickly forget that these things are already within you. Still, it's difficult to make peace with the disarray, to dance in the storm, to have patience. The perspective you have, in abundance. "This doesn't feel right. These feelings are not representative of my true sentiments. This isn't how I want to be spending my time." The tears well up in your eyes and you silently count your breaths, willing the sobs to stay away. There are brave souls fighting terminal conditions, children starving, men and women fighting overseas, you say. These are true burdens, to try to remind yourself of perspective. These circumstances warrant tears, and yet the brave endure. Worsening feelings of guilt set in because the absolute logic is no match for your buzzing frenzy of a brain. 

What is wrong with me? I am stronger than this. At times, counting helps; other times it's futile. Someone you love with the best of intentions tells you to "suck it up" or to be tougher. Grow a thicker skin they say. Shake it off. Rationally, you understand, this is not necessary behavior. Emotionally, it is unyielding. The logic falls to the wayside and the feelings of helplessness rush in to fill the voids where your confidence and reasoning should reside. "I'll get you my pretty", she says. Anxiety that is. 

The right combination of reasoning, exercise, eating well, rest, and distraction eventually send her back to reside in her miserable place. She is dormant at least for now, until she decides to feast again on your vulnerabilities. To blow them out of proportion, to grab hold of your mind. To tug you lower. And when she comes next, I will be a little more prepared, unwavering in my pursuit. 

Pop goes the Pop Tart

I love pop tarts and I cannot lie. And it appears I am not the only one. 

To Prepare:

To prepare, fix your homemade crust or use a favorite pre-made variation. I am still trying to get my Nana to write her recipe down. She often says she doesn't use recipes. She just knows when the product is in her hands. I love that sensibility and I endeavor to develop the same as I progress. That aside, one sure winner is this recipe from Williams-Sonoma. 

While the pie dough is setting in the refrigerator if homemade, preheat the oven to 350 degrees and prepare your fillings. Find below a few suggestions but anything goes!

Roll out the dough to 1/8 inch thick on a generously floured surface. Cut into desired shapes; here I used tiny rectangles. Arrange equal sized bottoms and tops on a baking sheet lined with parchment. Spoon a little less than a teaspoon of filling onto the center of your bottom. Seal the pie with a rub of water around the edges. Crimp with a fork. Coat the top of each pie with a light coating of egg wash. Bake for 20 minutes or until golden, and bottoms are lightly crisped. 

Fillings and a Basic Glaze:

Strawberry (berry): 1 cup of strawberries or desired berry, finely chopped. If you are making a larger pop tart, they need not be chopped so finely. Cook over medium heat, stirring frequently. Meanwhile, whisk together 1.5 tablespoons cornstarch with 1.5 tablespoons water. Add to the berries and continue to stir until thickened. Add sugar to taste. Let cool before assembling tarts.

Apple: 3 Granny Smith apples, chopped to a small dice. Toss with 1 tablespoon fresh squeezed lemon juice, and cinnamon and sugar to taste.  Cook your apples along with1/2 teaspoon vanilla and two tablespoons of water over medium heat, stirring often until tender. I tend to top these with a glaze and crisped bacon! 

Glaze: Whisk together 3/4 cup confectioner's sugar and 1 tablespoon liquid. I've used milk, but lemon juice works as well. 

A few other of my favorites are pumpkin pie filling, simple fruit preserves, nutella, peanut butter, cinnamon and sugar and even Shepherd's Pie. If you are lacking inspiration, Joy the Baker probably has some to spare. The world is your oyster. Enjoy!