MY STORY: LIFE IS SHORT...GET TO LIVING!
For those who want a condensed, professional bio, please see here. For those who want to know the whole story, pull up a chair and grab a cup of coffee, because it’s been a journey to get here…
Living 50% at-risk for a cruel terminal disease, I always thought my biggest risk was dying. It's not... I now know there's a greater risk than dying.
I was a student in college, thinking I had my entire future in front of me, when out of nowhere, life threw me a curve ball I never saw coming: I learned I am living 50% at-risk for a devastatingly cruel, incurable brain disease that threatens to cut my life short. Having never heard of the disease before, I started researching and what I found was unimaginable: Huntington’s Disease is an inherited brain disorder that slowly deteriorates a person’s mental, emotional and physical abilities in the prime of their life, taking away their ability to walk, talk, think, reason or feed themselves, and leaving them a prisoner in their own body. It’s like having Parkinson’s, Alzheimer’s, ALS, and schizophrenia all at once. Symptoms usually appear between the ages of 35-50, and worsen over the course of 10-20 years. At this time, there is no cure and no means of preventing it. It has been called the cruelest disease known to man. I was completely shocked, heartbroken and terrified. In an instant, the future I had pictured for myself seemed to fade away. I've always tried to make good choices to set myself up for a successful future, even graduating valedictorian and president of my high school class and student council. The future seemed so bright. And now, suddenly, the path of my life was entirely altered by no choice of my own, simply by my genetic fate, and there was nothing I could do to change it. My life would probably never be as it ‘should’ be, and by something completely out of my control: My DNA. Devastated, scared and ashamed, I dealt with it the only way I knew how: I hid it. For years I didn’t tell anyone. I didn’t want anyone knowing my life wasn’t as perfect as it seemed. I didn't want anyone seeing how scared I really was.
While many of my friends were moving forward and getting married, I was wondering how to even begin dating, when I’d have to explain to anyone I got close to that there’s a 50% chance I could lose control of my mind and body, and that they may have to completely care for me in the future. With a 50:50 shot of inheriting such a horrible illness, I was skeptical I should even pursue a relationship. How could I possibly burden someone with that kind of future? Who would even want to take on that kind of risk with me? Even the doctor who initially explained Huntington's Disease to me told me I should rethink ever getting married. The message sank in deep: I was damaged. Huntington's was shameful and something I had to keep hidden. I eventually mustered up the courage to start dating, but after a lot of disappointment and rejection, I grew to feel more damaged and broken. More unworthy and unlovable. More ashamed of Huntington’s. I knew the odds of finding someone willing to take on this kind of unknown future with me were pretty slim. So I figured single living was probably best for me, and I embraced that. I got on with my life. I told myself I wasn’t going to let this stop me from living. I embraced my friendships with love and laughter, my life with adventure and enthusiasm, my dreams with determination, hard work and passion, and my future with optimism, faith and hope. All the while this huge secret loomed over me. No one had any idea what was really going on inside. I was too ashamed to tell anyone. Everything looked just fine on the outside, but deep down, I was struggling. Underneath it all, I felt so broken. I’ve learned it’s easy to touch up our outward appearance to make it look like everything is okay when in fact, it isn’t.
Years later, life threw me another curve ball. This time, a tall, dark and handsome one with a lot of heart, humor and hope to boot. I fell in love with an incredible man who wasn’t afraid of Huntington’s Disease. He saw it as making the time we have together even more precious, and he wanted to marry me—in sickness or in health—no matter how long or short our years together. No matter what the future held, he knew he wanted to spend it with me. He even threw himself into raising money and awareness for a cure. You think that would be a beautiful ending to my story. But there was a problem. The day he proposed, something totally unexpected happened. Here he was, down on one knee, ring in hand, completely vulnerable, asking me to be his wife, and all I could do was cry. And not the happy kind of tears either! I was sobbing to a point where I was shaking uncontrollably. I attempted to compose myself, but the tears wouldn't stop. I had no idea what was happening to me. I felt like I was completely unravelling. So many intense emotions were ripping through me all at once: fear, anxiety, guilt, unworthiness, doubt, shame, frustration, uncertainty of the future… As I stood there looking through my tear-filled eyes at the most wonderfully loving and selfless man I have ever met, asking me to be his wife, I wanted so badly to say, "yes," but I simply couldn't. Something so strong was holding me back. I felt completely powerless. And that’s when it suddenly hit me: I wasn’t okay. My emotional pain ran deep and I never realized it. I so badly wanted to move forward with my life to marry this man I deeply loved, but I was completely stuck. I was paralyzed by my fear. That evening was another life-altering moment for me. The pain of watching the man I loved so deeply tuck that ring back in his pocket was absolutely heartbreaking. It's when I knew I had some serious healing to do. I needed to come to terms with whatever was holding me back in order to move forward and take my life back. Not just for my future, but for this man I loved so much. Though that evening had to have been difficult and painful for him, too, he didn’t get upset, angry or discouraged. Instead, he just held me while I sobbed, and told me he’d wait for me as long as it took me to heal inside, even if that meant forever. And believe me, my healing journey has taken a while…
Sometimes we need to start by unravelling what’s holding us back so we can become who we really want to be. And that means acknowledging, feeling and healing the pain of the past so we can move forward. If we don't, we start cutting our life short without realizing it.
I didn’t realize it at the time, but what I was actually experiencing that evening WAS an unravelling—years of hidden pain, fear, shame, guilt and unworthiness were surfacing. Years of isolation, inadequacy, and anxiety all came rushing out. I was emptying my pain. Turns out, my hiding wasn’t healing. (In fact, shame thrives in secrecy and I never knew that!) All those years of hiding, I never actually processed my pain. We can’t heal what we don’t allow ourselves to feel. I hadn't fully grieved the disappointment, heartbreak, and sadness when I was told about Huntington's Disease as a young college student, and now as an adult, wanting so desperately to move forward and live the life I really wanted, I was stuck. On the outside I looked perfectly fine, but on the inside, I was a mess. Those years of isolating myself and hiding caused so much fear, shame, guilt, inadequacy and unworthiness to get raveled up inside of me, and now, years later, it was resurfacing and keeping me stuck from moving forward with my life. Here I'd met the man I knew I wanted to marry, but I had already convinced myself I wasn't worthy of marriage. I didn’t feel I was deserving of that kind of love and happiness. I had spent so many years feeling ashamed about Huntington's, telling myself I wasn't good enough, that I was 'less than' and inadequate. I allowed myself to feel damaged and broken. Also, I allowed what others said to me make me feel I was unworthy and unlovable. Feeling we aren’t ‘good enough’ or ‘worthy enough’, or that we’re 'inferior,' ‘less than’ and inadequate, we create even more suffering in our lives. When we feel unworthy, we unconsciously punish ourselves by self-sabotaging and getting in our own way.
As I slowly began unravelling all the layers, I was able to acknowledge all the negative emotions that were holding me back. My fears and insecurities were like an anchor weighing me down and keeping me stuck. When I started processing and releasing those negative feelings, and replacing them with more positive ones, something gradually started changing inside me. I began uncovering newfound courage, strength, and confidence that had been suppressed over the years. My heart became filled with even deeper love, joy, gratitude, hope and faith. I developed a deeper appreciation for my life and the time I am given, along with a deeper connection with those I trusted enough to let in to the most painful parts of my life. That’s when I was truly able to heal, to find peace and acceptance within myself, and to move forward and live my life fully again. I experienced a feeling of empowerment I hadn’t experienced before. When we think we are worthy, we show up differently in the world. We show up with more confidence and courage. The day I officially reclaimed my power and TOOK MY LIFE BACK is the day I courageously asked my now-husband to marry ME. And gratefully, he said ‘yes!’ Being a wife is truly one of the greatest joys and honors of my life. It took me nearly a decade of unravelling, processing and healing to finally marry the man I now gratefully call my husband. We even lived in different states, so he commuted all those years to see me! I am so grateful he never gave up on me. His patience, sacrifice and unconditional love have been some of the greatest blessings I have ever known. Looking back, I cringe when I think how close I came to letting my fear and insecurities determine my fate. I now realize I had started letting them cut my life short far before Huntington's ever could. I learned the hard way that fear, worry and insecurity don't stop us from dying; they stop us from fully living.
Life's deadliest 'diseases' we're ALL at-risk for... The most terminal diseases of all.
I am living proof of the incredible power fear, worry, insecurity, self-doubt, guilt, shame, and unworthiness can hold over us. They hold so many of us back from living fully and realizing our potential and we don’t even know it. Too many of us are not really living our lives because we are living our fears instead. They cause us to unknowingly self-sabotage our relationships, our dreams and essentially our lives. They can make us feel powerless and unworthy. They are some of life's cruelest and deadliest 'diseases' we're ALL at-risk for. And they infect our entire life! They slowly kill our confidence, our courage, our hopes, our dreams, our potential, our worthiness, our love and our joy. They are LIFE'S MOST TERMINAL DISEASES because they stop us from fully living and they cause us to cut our own lives short! As short as life already is, we make it even shorter by wasting so much of our precious and limited time on self-defeating, self-limiting beliefs like fear, worry, regret, disappointment, procrastination, doubt, guilt, shame. Too many of us are not living our life because we're living our fears and unhealthy emotions. If we don’t address our mental blocks and obstacles, unresolved hurts, and past issues, our self-sabotaging patterns continue to repeat themselves. (Did I mention it took me 10 years to feel worthy and courageous enough to marry my husband?!) Most of us are carrying around heavy things that weigh us down, hold us back and rob of us of joy and life. Before we can move forward, we need to process our negative emotions that get in the way of living life fully. Most of us try to avoid facing pain, but pain has to be processed to be healed. If we don’t heal our pain, we will spend the rest of our lives running from it—hiding, avoiding, distracting or even numbing ourselves. Ignoring it and hiding it won't make it go away. Believe me, I tried that. We have to feel our feelings and release them instead of recycling them over and over like I did all those years, otherwise they will turn into something more--insecurity, shame, bitterness, resentment, anxiety, depression, anger issues, lack of confidence and worthiness...the list goes on. Holding onto our hurt can have devastating lifelong effects. We will spend the rest of our lives just trying to 'get through life' instead of fully living our life. I used to think that not showing our pain was a sign of strength. I’ve since learned that anyone can hide, but facing challenges head on and working through them is the real strength. We’re not fully living our life when we’re hiding from it. By healing the pain of the past, we bring ourselves back to life!
I now know that life's most terminal diseases are actually the ones in our own mind because they stop us from fully living.
My Heartbreaking Realization: Life is short and I cut mine even shorter...
What should scare us more than dying is cutting our own life short while we're still alive. Never really living the life we wanted for ourselves.
I've come a long way in my journey. When I first learned I was living at-risk for Huntington's Disease, I thought my biggest risk was dying and my greatest sadness would be my life being cut short. Not anymore. Now I know our bigger risk is cutting our own lives short while we're still alive. I spent so many years living a life wrapped in fear, insecurity, shame, unworthiness, self-doubt, and guilt that I wasn’t fully living. I was sabotaging my own life, keeping myself stuck from moving forward and living the life I really wanted for myself. I put my life, love, happiness, hopes and dreams on hold for years. The biggest, most heartbreaking revelation of all was this: WITHOUT EVEN REALIZING IT, I WAS LETTING LIFE PASS ME BY! IN DOING SO, I CUT MY OWN LIFE SHORT! Time doesn’t stop simply because we’re stuck. Instead, our life goes on without us and we risk missing it. I can tell you from first-hand experience that nothing is more heartbreaking than watching your precious days pass you by, wanting so badly to make changes to live more happily and fully, but something is holding you back. Wanting to move forward to live the life you really want for yourself, but feeling completely stuck and overwhelmed. Wishing so badly that you had the courage and confidence to live the life you truly want. Letting years pass dreaming of things you want to do but not doing them. Knowing you are capable of so much more but feeling completely powerless in making it happen. I used to think dying was the worst thing that could happen to us. It’s not. Watching our life pass us by is the worst thing. If we're not careful, time slips away from us so quickly... What should scare us more than dying is letting our days pass us by, not really living the life we want to live. And getting to our deathbed, looking back, regretting the way we lived. We shouldn’t fear dying; we should fear regret. We can’t prevent dying, but we CAN prevent regret. So that brings me to where I am today embarking on a mission I call Regret Prevention.
We need to let go of the things we can't control and focus on what we can. We can't control dying; we can only control living. The length of our life might be out of our hands, but the fullness isn't. We might not be able to prevent dying, but we can prevent regret. Dying shouldn't be something we fear; it should be something we embrace to inspire us to live our days more fully. Our time is limited so don't waste it.
Turning My Regrets into My Mission...Regret Prevention(TM)
MY BIGGEST, MOST PAINFUL REGRET IN LIFE WILL ALWAYS BE LOST TIME. I lost years of my life to my own unhealthy thinking and self-sabotaging beliefs. I spent so much of my precious and limited time being held back by fear and not feeling worthy of the life I really wanted for myself. In doing so, I cut my own life even shorter. I would do anything to go back and get that lost time back, but I can't. Time is something we can never get back once it's lost. But what I have been able to do is use my past regrets as lessons learned to help me make changes and adjustments to live the rest of my days to the fullest--with no more regrets--to finish life strong. And my hope is to inspire others to do so as well with a mission dear to my heart I call Regret Prevention(TM). My own painful experience is what's lead me to my passion for doing what I do today as a speaker and mentor to women. Most people call it life coaching, but I see myself as a Regret Preventor. I’ve found new purpose in life: To inspire and empower others to make changes to their lives before it's too late. To start living without regrets! To not put off living. To not let fear hold them back. To not let shame or guilt keep them small. To not let self-sabotage keep them from the life they really want. To believe they are worthy of the life they want to live. To courageously step up and live the life they truly want for themselves. To not let anyone make them feel they aren't worthy. To follow their dreams. To embrace life with purpose, passion, clarity and happiness. To help them, too, create the kind of life that makes them feel FULLY alive again! Most importantly, to not put their life on hold. To not waste any more precious time trapped by the past or paralyzed by the future. Regret for the past and fear of the future is more time wasted. Everyday we're stuck, we lose another day of life.
I DON'T HAVE TIME TO WASTE, BUT NEITHER DO YOU. LIFE IS SHORT FOR ALL OF US. WE NEED TO GET TO LIVING! None of us truly knows how much time we have left. In the end, it's not the years in our life that matter most; it's the life we put in those years. What matters most is how FULLY we live; not how LONG we live. That's why it's so important to get unstuck and live the life you really want for yourself NOW. LIFE IS TOO SHORT TO WASTE ANY MORE PRECIOUS TIME!
What should scare us more than dying is getting to our deathbed and regretting the way we lived... Life is short, my friends... Get to living!
So it is with utmost vulnerability, love and sincerity that I welcome you to my website and into my journey. I'm sharing my story openly with you so that you, too, may ask yourself the most important question you will ever ask yourself:
ARE YOU LIVING OR ARE YOU LETTING LIFE PASS YOU BY? IN THE END, WILL YOU BE CELEBRATING OR REGRETTING YOUR LIFE? CLICK HERE TO FIND OUT.
All My Love,
"We shouldn't be afraid of dying; we should be afraid of regretting the way we lived. None of us can prevent dying, but ALL of us can prevent regret.
Life is short. Get to living!" ~Julie Clark Lingen