“But better to get hurt by the truth than comforted with a lie.” ~ Khaled Hosseini
Sometimes when reality speaks, I tend to plug my ears. Ignoring my limitations. Explaining away the spasms. Disregarding the spots on my MRI.
I like to make myself believe everything is all right. Having as many positive thoughts as possible. Always seeing my glass half full.
The problems start when I want everyone else to also believe my life is ideal despite the challenges.
This is nothing new. I frequently denied the truth. And when I tried to drown it I sank to the bottom. I’ve been doing this since I was first diagnosed. I’m so good at making the world see my life as wonderful and stress free. Telling everyone I’m doing great all the time. I find comfort in hiding in that fantasy. Rolling a red carpet over my troubles so no one could witness my anguish.
For years I’ve built up a wall thinking it would keep out perceived evils. But instead, it trapped all my internal problems within. It’s as if I installed burglar bars on a burning house. With the intention of preserving and projecting a false narrative during every social interaction.
But guess what? It didn’t work. The lies came to the light. Making the pain even more powerful. Creating grief that swept my whole body. So potent even my shadow looked sad.
Periodically, MS has set a blaze to my life. I have lost a lot in those fires. Each flare has changed me so much. I’ve been able to cope by focusing on the only thing that is consistent. The lies.
I told those lies because I was afraid of not being accepted. Scared of how everyone would react if they knew the truth. So I pretended nothing was wrong by smothering my fears with deceit.
But dishonesty can only take me so far. I began choking on all the lies. I realized I couldn’t constantly live up to the fantastical image I created.
So instead of hiding behind a falsehood, I’m going to try and let everyone see the true me. Embrace my faults. Celebrate my successes. And stop constructing a wall of lies.
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Nicole, I am continually amazed by your ability to continue writing this blog in a new and interesting way. It’s wonderful to read each and every blog. You are most certainly unique in your willingness and ability to put into words what you are experiencing each time you sit down to type. Thank you for putting your story into words. I’m thankful for your friendship as you so eloquently describe your travails and experiences with this disease we share.
I hate to say, but when I tell friends I have MS, many “friends” seem to change the way they treat me, or worse, I don’t hear from them anymore.
I am afraid to tell people I have MS because of what I said earlier. I delay the MS talk because I need friends. I look better than I feel. MS sucks, the dead legs, extreme fatigue, slow thinking, and etc. is the real deal.
We need access to the Immune system eradication, and repopulation of your own stem cells NOW, or more will become paralyzed, and not be able to talk.
The FDA may take until 2024 per my MS Dr. to approve the therapy.
Please, write emails to get this treatment “Fast Tracked” NOW !
Thank you for speaking out so courageously. Your writing is beautiful and inspiring to me and our fellow MS warriors.
So many people have a major reaction to a common word! WALL… I understand your wanting to keep your struggles to yourself, but doing that prevents others from helping you. PLEASE BE OPEN AND HONEST. Being authentic is contagious. It helps everyone – especially yourself!
I’d been avoiding all discussions of “walls” since, you know, it’s been, uh, a touch heated. Then you bring up walls! And burglar bars. And burning houses. And uncontrollable blazes. Oh Nicole, I miss you so! You are a bright light in the universe. I would say you are ON FIRE but I would rather your disease be a smoldering flame. Hugs from Albuquerque.
Unfortunately, I think this is somewhat human nature. I too often feel the need to highlight all I have”done” over a period of time to make sure everyone knows I am still a worthwhile member of society trapped in what often feels like a shell of my old self. I have found since I started my own blog, since being inspired by following yours, that I find it much easier to be the “real” me online. I have had many people reach out to me since following it and said “I never realized you dealt with those struggles.” I think if we let people in, they can relate to us better after seeing that we also have many days that are not “post worthy” on social media and that we also have significant obstacles in front of us. I so admire you Nicole, and your candid honesty on you site. It makes me realize how much more in common we have than differences between us when dealing with illness, and more important, life.
I have been doing the same. Only been since june i even work for neurologist and i pretend im ok or sometimes dont even its the ms i think its my kidney disease or just some pain. Im still trying just to find the new me the ms me and still be the me I always was. I dont like attention or the you ok? Need help? Then there are those who i say im not good and ask why?
I trying every day
Man I felt like you were telling someone about me thank you for Helpping me not feel so alone! Yes I just tell others now just Normal for Me and MS
Love you and sending hugs my friend.
So true, I get tired of saying I am doing great when the reality is something so different
I’m touched beyond words by this post! Genius when you say “even my shadow looked sad”. For I have gazed upon my own shadow (after being told of my courage) and wept seeing the truth of my inner sadness. “Red carpet over my troubles”… “bars on a burning house” GENIUS!! Nicole, pure genius.
Thank you for your bravery in posting another great story. I remain forever grateful
I understand and agree with you Nicole. I found a sense of peace once I began to accept/love me and slowly remove the mask. It wasn’t easy and I couldn’t do it alone. Through much prayer and the grace of God I am in a much better place…most of the time.
I now realize that in spite of my situation, I still have much to be grateful for, successes to celebrate, lessons learned, testimonies to share and the ability to inspire others. You clearly are an inspiration to others Nicole.
We can take off the mask and LIVE our lives one day at a time. It may be at a different pace than what we would have preferred, but LIVE nonetheless! Peace and blessings to you Nicole.