The Tattoo That Gave Me Strength After My Mastectomy

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On April 25, 2013, I was diagnosed with breast cancer after a routine mammogram. The news hit me like a left hook. I was shocked, numb, scared. Immediately, I felt like a victim.

Next came a surreal swirl of events: a mastectomy, reconstructive surgery, then a horrible infection that delayed my chemotherapy. The tissue expander they’d inserted to begin the reconstruction process had to be removed. Instead of a perfect fake breast, I had a concave, empty space where Leftie used to be. I looked even more battered and defeated, instead of like the Amazon warrior I needed to be.

But I had more important things to worry about. Like not dying. Even though I was Stage 1 and my chances of survival were 86 percent, I obsessed about my 14 percent chance of not living through this ordeal. I adopted the Alcoholics Anonymous “one day at a time” credo, determined to wake up each morning and make it through the next chemotherapy infusion, the next doctor’s appointment.

By some miracle, I did.

As I write this, I’m 15 months post-chemo. My hair has grown back. I’ve become less afraid and can live my life in more than one-month increments — planning any further than a month in the future used to make me hyperventilate.

But I’m faced with a new reality, with a different woman I see in the mirror. A damaged woman. A jigsaw girl with a missing puzzle piece. A woman with a divot and a jagged scar where her left breast used to be.

I tried hard to convince myself to revisit plastic surgery, but the thought of it made me extremely anxious. Would I get another infection? Would they be able to close me up this time? Would I be able to weather at least two more surgeries and the painful months of the reconstruction process?

My answer was no. I couldn’t. I wouldn’t. I didn’t want to. But still, there was that broken woman who stared back at me in the mirror with a slouched, almost apologetic posture.

After much soul searching and deliberation, I decided to turn a negative into a positive. I decided to turn my scar into a badge of survival. I decided to get a tattoo.

I surfed the Internet, combed through Pinterest, Babble and Instagram. While my 14-year-old son suggested a dragon (at least, to him, I was a fierce cancer warrior), I sought something more symbolic. You see, I was diagnosed in the middle of cherry-blossom season. Soon after receiving that terrible news, I remember standing in the Brooklyn Botanic Garden, looking up into a canopy of vibrant pink and wondering if I’d ever see another spring.

I decided my tattoo would be a cherry blossom branch that not only traced the lines of my scar but embraced it. I just had to find a tattoo artist willing and able to help bring my vision to light. I began shopping in a field that men dominated Besides someone with talent, I needed someone sensitive to what I’d just gone through. I needed a woman.

I found just what I sought in the skilled hands of Gen “Pistol” Gordon of Guts’n Glory Ink in Rosendale, New York. I knew it the minute I walked into the shop, which was bright, airy and inviting. Maybe it was Sagan, the cool pooch who stood guard. Maybe it was Gen herself, a School of Visual Arts graduate and self-described nerd, who resembled Bettie Page’s adorable, slightly bookish younger sister. Maybe it was the way Gen looked at my scar without disgust or the way she touched me, softly yet solidly. I was no longer a cancer victim. To Gen, I was a flesh canvas that she could transform into something beautiful.

On September 27, 2014, I began that transformation. Gen created an exquisite custom-drawn cherry blossom branch, using the pictures she’d taken with her iPhone for reference. Gen transferred the design onto a stencil and gently pressed the stencil to my chest, warming it with her hand so it would take better. When she began tracing the outline with her tattoo needles, I felt little pain — more than 18 months later, my scar was still numb. What I did feel was a metamorphosis.

I thought I would cry; I didn’t. Maybe I’d cried enough. Maybe I was done crying.

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After the first tattoo session, Gen and I were only halfway done. She didn’t want to overly traumatize an area of my body which had seen enough trauma. A bold black outline masked my scar, snaked around it, defied it.

Even with my tattoo half finished, I felt differently about myself. Maybe it was my imagination, but I began walking taller. I began to feel more sensual. I had a secret under my shirt that few people besides my husband, me and Gen would probably ever see in person — but it made me feel almost whole again.

On October 18, Gen finished my cherry blossoms. I’d turned 55 a few days earlier, marking two birthdays since my diagnosis. It seemed a fitting gift to myself. I stared in disbelief at the reflection in the tattoo shop’s mirror. A strong, yet delicate branch, bursting with persimmon-colored flowers caressed my mastectomy scar, symbolic of my rebirth. It gave me strength. It gave me ownership. It gave me hope.

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People tell me I’m an inspiration. That I’m brave. That I’m awesome, cool and gutsy. Mostly, I tell them I’m a little bit vain. I just got tired of looking at my scar in the mirror — and decided to do something about it.

This story first appeared at Ravishly.com, an alternative news+culture women’s website. It’s also appeared on Better After 50. More from Ravishly:

How I Learned To Get Naked With Strangers Again After My Mastectomy

Fatal Brain Candy: How Prescription Pills Almost Killed Me

Being Thin Didn’t Make Me Happy, But Being “Fat” Does

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Why It’s OK That My Sons Don’t Always Love Their Sister’s Autism

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I recently came across an online journal dedicated to people whose lives have been touched by a wide variety of disabilities. As the parent of a 13-year-old with an autism spectrum disorder, I found it inspiring and empowering to read one uplifting story after another about how this or that diagnosis has turned out to be a gift —  and how the writer wouldn’t change a thing about the person they love… or their own condition. I’ve even shared a few of our own stories about my daughter, Erin – the perspective she gives and the exceptional people who have come into our lives as a result of her disability.

Many individuals with more mild forms of autism embrace their diagnosis, reject the term “disability” and instead celebrate the uniqueness it’s bestowed upon them. If given the choice, Temple Grandin, autism’s unofficial spokesperson, has said if “I could snap my fingers and become non-autistic, I would not.” She asserts, and rightly so, that she is “different, not less.” 

As the autism community prepares to kick off Autism Awareness Month with a celebration of World Autism Day on April 2nd, I wonder, however, if in embracing and spotlighting the many positive sides of different, we’re somehow rounding off the edges of this neurological disorder in a way that makes it difficult for some to say this is actually not so fabulous. I’m quite familiar with a few who feel this way.

If my sons could “snap their fingers” and change their big sister’s disability, they would in a heartbeat. They ask me all the time if there will ever be a cure for autism.  

Last fall a close family friend received a cancer diagnosis. But it was thankfully caught early and after aggressive treatment, she’s now cancer free. My boys promptly asked if we could do something like that for Erin.  

They love their sister, but they don’t love that she has autism. 

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It’s not funny for them when she has a meltdown in a public place. They don’t like that she can’t dress or care for herself. That she screams through a shower. That she often gets into their stuff and writes on their books or tears up a poster or important school form. That she reads to herself rather loudly regardless of whether they’re watching a movie or game and the score is tied with ten seconds left. That she takes up so much of Mom’s time and attention and thoughts and concern.

“You love Erin the most,” I’ve heard more than once — though generally when a demand has been placed on them and not her.  

They get embarrassed and frustrated and scared about what the future holds for her and them. Where will she live? Who will take care of her? Will she go to college? Will she get married?  

When my oldest son was in kindergarten and had a friend over for the first time, he prepped the playmate with a long list of potential pitfalls: “I just want to tell you that my sister has autism, and she might jump up and down in front of the TV or spill her juice or scratch you. Oh and she eats her pizza backwards!” (The friend, undeterred, happily entered the house and a rather uneventful playdate ensued.) 

Insecurities aside, I like to think it’s their love for her that makes them hate her diagnosis. They would like to see her live a typical life — or rather, a life just like theirs. She should be running off to practice and studying for the next big test alongside them. Helping them navigate social media. Sharing their inside jokes. Snickering at inappropriate movies as opposed to “Barney” re-runs.

I know if Erin were typical there’s no guarantee there’d be this rosy relationship and life would be all milk and honey. There would be other hurdles and issues. I’m sure there are still plenty ahead.  

I’m also well aware that some people with autism or who have children with autism feel that they have been blessed and given a window into a special world — a world they would never have known if they had not been born with their disability. There’s no denying that.

And while this is true to an extent in our home – yes, Erin has taught us to smile, to hug and to love unconditionally – if her brothers could alter the conditions of her life – remove the impediments – I know they would.  

As much as I want them to accept and embrace what life gives, I don’t want them to feel guilty for wishing that Erin could tie her shoes or write her name or talk to them about how Mom or life can be so mean and unfair and yes, even fun, sometimes.  

I want them to know it’s OK to love their sister, while not loving that she has autism.

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The Mighty wants to read more stories about siblings, whether it’s your favorite memory or a tough moment that taught you something. If you’d like to participate, please send a blog post [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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I Have Many Questions About My Sister’s Disability, But Only One Answer Matters

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Friends come and go throughout our lives. Most people can’t say that they have had the same best friend for their entire life, but I can. My best friend is my sister, Maggie. She is the most loving, caring, and happy person that you will ever meet.

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Maggie was born with spastic quadriplegic cerebral palsy. She uses a wheelchair to get around and an augmentative communication device to communicate. Despite her differences, Maggie is able to do just about anything and often chooses to do them with me.

We have done just about everything that best friends our age do, and even more. We have been on every single ride in Walt Disney World together. We have danced around on our back deck in the rain. We have sneaked out to the store when Mom and Dad weren’t home. We have gone to the casino and played slots until all our money was gone. We have even gone SCUBA diving together!

There are many days where I sit and think about how life would be different if my best friend didn’t have cerebral palsy. Would she be in college like me? Would she go on dates and drive a car? How would she dress? What would her voice sound like? How would our day to day life be different?

Even though these questions are sometimes tough, I have to think about things from the other side, too. If Maggie didn’t have cerebral palsy, would we still be as close as we are? Would I still be going to school to become a speech-language pathologist? Would I really have gotten my SCUBA diving license? Would I have had all these incredible experiences and life skills that I have? Would I really be the same person I am today?

I will probably never know the answer to any of these questions, but that doesn’t matter. All that matters is that I have an incredible best friend who I know will always be up to go on a crazy adventure and love me unconditionally.

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The Mighty wants to read more stories about siblings, whether it’s your favorite memory or a tough moment that taught you something. If you’d like to participate, please send a blog post [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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The Simple Word That Can Make My Nonverbal Son’s Day

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My teenage son acts differently than most and, as a result, also communicated differently. Despite years of occupational therapy, he can’t wave “hi” or “goodbye” well and he rarely looks at you when you’re talking. However, over the last two years we’ve learned that he is listening, and nothing makes him more upset than when people ignore him.

unnamed Nonverbal autism has robbed him of the ability to conform to society’s social norms. Typical conversation is not easy for him because he has to type out every letter. One. By. One. People become impatient. They walk away, or they try to finish his sentence for him, assuming this “helps.” People will also talk to me about him in front of him as if he was not there. “Does he like sports?” “Can he hear me with those headphones on?”

I could have been this person. Actually, I’m sure I was this person.

Well, with Autism Awareness Month starting on April 1st, consider this your PSA. We have lots to learn when it comes to people with physical and mental differences. I will acknowledge that we’ve come a long way, but we’ve got some room to grow.

Here are the top six things you should know about my son and others like him.

1. He hears everything. Talk to him or just say “hi.” This simple gesture can really make our day.

2. Practice patience. If you ask him a question, please wait for the answer. Quietly. If you don’t have time for a response, just say “hi.” 

3. When you see folks with autism out and about, know that sometimes, this in itself is a tremendous feat. Wave. Smile. And just say “hi.”

4. It’s OK to ask questions. My son types to communicate. It’s different. It’s OK to ask him questions about it. It’s not OK to stare and point. Worse case? Just say “hi.”

5. Teach empathy. We don’t need sympathy or pity. I love my life and autism has been a tremendous blessing. My kid is freakin’ awesome. You should meet him! Just say “hi” and introduce yourself. I guarantee you’ll be glad you did.

6. Most days, “special needs” appears to mean “ignore.” Really, it just means “unique.” Seriously, if you take one minute to introduce yourself to someone different from you, you’ll leave that conversation a better person.

Now go change the world, people!

This post originally appeared on Hardly Getting By

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What I Hear When People Ask, “Where Is He on the Spectrum?”

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Let me start by saying that I am no expert on autism. I am just an individual who has more experience with this subject than your average individual.

Growing up with a sibling with autism, I’ve learned a lot. I know all the ins and outs, the rights and wrongs, the tips and tricks. I understand autism in ways that everyone else simply does not and that is the most frustrating part of it all. Few know what having autism even means. My goal is to eradicate all preconceived ideas and feelings about what people think autism is and/or looks like.

Autism, in its simplest terms, is a developmental disorder. It is characterized by difficulties in communication skills and social interactions. Autism is a spectrum disorder, meaning that the severity of these difficulties varies for any person who has it. The range seems endless.

When people find out that my brother has autism, the most common question I get asked is, “Where on the spectrum is he?” This is hands down one of my least favorite questions because, to be honest, I don’t really have an answer.

When I think of my brother, where he is on the spectrum isn’t exactly the first thing that comes to mind. To me, that question is the equivalent of asking someone, “What are your weaknesses?”

My brother, Nick, has a hard time with things involving communication and knowing how to react and respond in social situations. Does this matter to me? No, and nor do I think it should to anyone else. No one should be defined by what they struggle with. Just because someone has autism does not mean it makes it any less weird to ask this question.

But I get why people would ask. Most don’t know much about autism and this question is an attempt to gain more knowledge, which I can appreciate. However, asking about placement on the spectrum is like asking for a medical diagnosis, and any family member of someone with autism will tell you, that is not something they like to dwell on.

When people hear that someone has autism, they tend to think about it in a negative way. Not necessarily on purpose, but because people think of it as a disorder or disability. Scientifically, yes, I suppose that’s what autism is. However, this implies limitation, weakness, and inability to do what others can. I don’t like to view it like this. It is unfair to people with autism because it often overlooks their talents and strengths. That’s why I believe that autism is merely a minor setback.

My brother, Nick, may struggle with communication, but he is a phenomenal musician. He can play practically any song he has ever heard by ear. A trait I admire about Nick is that he doesn’t care what other people think, something I think a lot of people struggle with. He is fearless and there is not a challenge he won’t face and conquer. Having autism rarely holds him back and I find that truly amazing.

A misconception about my knowledge of autism is that I have all the answers. I am only going off of what I observe on a daily basis. No two kids with autism are alike. I don’t have an explanation for why any one person with autism does what they do. I don’t know why Nick freaks out when we play Christmas music on the radio but will play it to his hearts content on the piano. I couldn’t tell you why Nick is such a picky eater but will eat a whole package of bagels in one sitting. Why does Nick like to repeat lines he hears from his favorite movies all the time? Who knows?

I am just as clueless as anyone else as to why he does what he does. Is it because he has autism? It is possible that some aspects are, but we can’t forget that Nick has his own personality. It’s just the way he is. I refuse to believe that his autism defines him or anyone with it. Everyone probably does something out of the norm that others would question, so why should things people with autism do be any different?

Autism is not easily explained. It affects anyone who has it in drastically different ways that aren’t comparable to one another. A person who doesn’t live with or is not in regular contact with someone who has autism can’t begin to comprehend it on a personal level. It is very important to me that autism isn’t misinterpreted.

People with autism are human beings just like the rest of us and shouldn’t be viewed differently because of their minor setback.

This post originally appeared on Autism Empowerment.

The Mighty wants to read more stories about siblings, whether it’s your favorite memory or a tough moment that taught you something. If you’d like to participate, please send a blog post [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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When Another Special Needs Parent Told Me It Doesn’t Get Easier…

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I met a woman recently who has an older daughter with similar disabilities to my 6-year-old, Sully (both are cognitively challenged). I felt such a pull toward her, secretly harboring thoughts that she would pull me close, hug me and tell me it’s all going to be OK. That they grow up, they figure it out, and a happy ending exists. That’s not what she said.

When I finally had the chance to talk with her, the first thing that came out of her mouth was, “I wish I could tell you it gets easier. It doesn’t. It only gets harder. As they grow they become more and more different. They aren’t cute little kids anymore; they become teenagers and adults that just don’t fit in.”

CRUSHED. I was just crushed.

Where do I go from here? The last few weeks have been clouded with anger and sorrow. Then some rage mixed with tears and despair. There are days I’ve hardly been able to carry on a conversation. Thinking about what will come of the rest of his little life has consumed me.

This is where the choice comes in. When I was growing up and I would get in trouble for this or that, my dad would always give me a choice. Usually there was a clear option, but at least there was a choice right? Twenty five year later, I’m faced with the same decision. I can choose to continue to fill my days with anger and worry for his unknown future, or I can live believing he will thrive, filling my heart with hope and love, turning my compassion into action and my joy to motivation.

I guess if you quiet your mind and listen carefully to your heart, the decision is clear.

Choose hope, friends. Love without boundaries. Throw joy and compassion around recklessly. We all have our own truths; this is mine. And truth doesn’t mean you won’t have a bad day; truth is just deciding to kick your bad day’s ass.

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This post originally appeared on PRIDE Coaching.

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