For nearly twenty six years I have been open, honest and willing to share my story about living with achondroplasia. Heck, I even put it into book form! And for each and every one of those years I have told myself and others, “I wouldn’t change myself for the world.” And it’s the truth. However, I believe it has become assumed that we [especially those who are disabled or as I prefer, differently-abled] have to put on a facade that we love ourselves every moment of every day and wouldn’t ever change the hand we were dealt — in order for [abled] society to accept us. Goodness gracious, to think of people’s reactions if I told the world, “Sometimes I wish I wasn’t 1 in 25,000?!” Just thinking that phrase instills feelings of weakness, guilt, fear, sadness, all the things. And, I’d be lying if I said that the thought has never crossed my mind.
Last week I learned of someone with achondroplasia, also having undergone procedures similar to what I have had done, who took their own life. We were good acquaintances and the news hit me hard. Really, really hard. Like, I could not stop drawing parallels between the two of us. And I was having flashbacks to the last four-ish years of my life with my spinal stenosis fiasco.
See, this isn’t unheard of, people in the skeletal dysplasia community dealing with anxiety, depression and dark thoughts. Here I am, right now, telling you that is me. And has been since I was young. And that’s ok. We all have our stuff. Life is not easy, (easy doesn’t last) especially when people can pick you out of a crowd because you look different and that warrants pointing, staring, laughing, name calling etc. I could go on and on about what I deal with from ignorant people. There are days when I have no problem brushing it off, knowing that the words and actions of others are not a reflection of me but of them. And then there are the days that it wears on me. It cuts deep, I scream, I cry and I question so many things. Dealing with society’s bullshit along with the various and sometimes relentless medical hurdles that we can be faced with — what a gourmet recipe for disaster that can become. And what I want, more than anything, is to eliminate the stigma that comes with admitting that, “I am not ok.”
MAKE THE CONVERSATION LOUDER.
Whether you have dwarfism, another physical disability or different-ability, family or relationship difficulties, financial strain, are a victim of abuse, racism — whatever it is, there is NO shame in expressing the depths of your heart and asking for help. We have all known pain and darkness. The pressure from trying to act like everything is fine is the shovel digging your hole deeper. It’s overwhelming.
MAKE THE CONVERSATION LOUDER.
There is always someone willing to listen; friends, parents, therapists, siblings, family members, neighbors, doctors… so many people. Finding the right words to explain exactly how you feel, hearing yourself say them and actually asking for help might be the hardest thing you’ve ever done. I get it. Send a text. Pick up the phone. Type up an email. Tap a friend on the shoulder. Walk into your therapists office. Be proactive for yourself and your feelings because they are valid and you deserve to be heard.
MAKE THE CONVERSATION LOUDER.
When we talk, listen and hold space for one another, it is quickly known and understood that we are not alone. There is strength in sharing. Ignorant people aren’t going to change. And we don’t have time to wait on them. Create an environment in which you are comfortable being you. Surround yourself with those who support you and lift you up. Feel everything. Use your words.
MAKE THE CONVERSATION LOUDER.
My name is Kristen. I have achondroplasia. I love myself unconditionally. I live with depression and anxiety. I have known pain, physical and emotional, and it has taken me to dark places. Some days it’s hard for me to get out of bed. I talk about it. I ask for help. I use tools like exercise and meditation. My voice and ability to listen are powerful. I am here to:
MAKE THE CONVERSATION LOUDER.
Please join me. Continue to have the conversation and MAKE IT LOUDER. How can we do this? Hold space for one another. Lift each other up. Be the spark in someone else’s darkness. Lend a shoulder or an ear. Ever since last week my wheels have been ferociously turning on how I/we can work together to MAKE THE CONVERSATION LOUDER. Last night, I opened my own memoir as sometimes reading my own words gives me comfort. This is what I turned to:
“My heart goes out to those I have had the honor of connecting with on this journey and all of you living in the face of adversity. Walking this path would not have been possible without each of you by my side. We are the lucky ones; the individuals who are strong enough, wise enough to handle what we do. It takes a special soul with sheer strength and grace that cannot be understood by just anyone. Nothing is easy; easy doesn’t last. At times, it is unbelievably difficult to the point where it’s almost unfair. And we do it. Our different-abilities have given us tenacity that is envied. We love deeper, laugh harder and smile wider. What most view as a dead end street, is but a mere roadblock to us. we are warriors and we are in it together.”
More to come.
Love.
Kristen,
I’ve been witness to your early struggles with your condition and the courage to make a hard decision to do limb lengthening which took many years for you to go through. I witnessed the crying and the pain on a daily basis, but also great tenacity to overcome the challenges awaiting you in rehabilitation (Physical Therapy) at every stage.
I’ve seen you grow into an accomplished and confident woman and I admire your writing skills and your honesty about your feelings. I agree with you that everyone has to find the courage to ask for help when they’re depressed and anxious which is most everyone these days. There is hope and there is help…you just have to ask!!!
Miss you! hang in there!
Jayne
Jayne! Thank you SO much for your words. I was and am grateful to have had you along on my journey. Love and hugs your way!