“You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, I lived through this horror. I can take the next thing that comes along. “ ~ Eleanor Roosevelt
It’s just one of those days. I’m sitting in my recliner. Sipping raspberry lemonade. Listening to myself think.
I always make sure I keep my thoughts safely inside. That’s because it seems, only a few people understand what I’m going through. Most aren’t aware I exist under a cloud of fear. And sharing those feelings is very scary. So I fool friends and family about my reality.
I deceive everyone with my mouth full of white lies and an arsenal of empty clichés. Concealing the silent rumblings within.
I use my quiet face to tell them, “I’m ok”. Holding my feelings between my teeth. Biting down on my emotions. Hiding behind a pain stained smile of hope. This is all done so the world can think everything is all right.
However when I’m alone, I put my head in my hands and try to forget I’m terrified. I sit on the floor with my arms towards the heavens, waiting for the storm to end. Waiting for God to send in the clowns to brighten my day. Praying that everything becomes still. Trying to resist being controlled by fear of the unknown. Being paralyzed by thoughts of an ambiguous future. The whole process is exhausting, draining and toxic. And I’ve grown tired of hiding my scared feelings. So from now on, when someone asks how I’m doing, I’m telling them what’s really going on in my life.
But will my reality make people uncomfortable? Can they handle the fact I sometimes cry when I’m alone? Will they laugh at me when they find out I often struggle to make it to the bathroom on time? Will they think I’m a terrible person once they learn, I’m jealous of people diagnosed with MS who are healthier than me?
Hearing these facts might be awkward for some. It may even deter friends from socializing with me. But worrying about upsetting them can’t be more important than my well-being. And suppressing my truth is mentally wearing me down.
Therefore, I’m going to put on my warrior’s face and start talking out loud. I just hope it doesn’t frighten people away.
[…] My New Normals is Nicole Lemelle’s personal blog about living with MS. Nicole is a passionate MS advocate and hopes to educate, reassure and inspire others through her writing. Posts include Never Give Up and Talking Out Loud. […]
Thinking of you and your beautiful smile. Praying for success with your speech therapy.
Your words unfailingly rng true! No one really wants to hear the truth. I am sick of hearing butb “You look/sound really good” as if what I say can’t possibly be accurate. So I lie lie lie no matter what because no one cares. If they did , not only would they believe what I say, I wouldn’t even have to say it!
WHILE I ALWAYS ENJOYED READING YOUR POSTS IN THE PAST, I HAVE FOUND THEM RECENTLY TO BE TOO DARK & DEPRESSING. I AM NOT UNSYMPATHIC TO YOU. I HAVE HAD MS SINCE 2001; I AM CURRENTLY SECONDARY PROGRESSIVE. I CANNOT WALK, DRESS OR SHOWER ON MY OWN. I HAVE ONLY 1 FUNCTIONING HAND & ARM. I TYPE WITH MY INDEX FINGER. I QUIT WORKING IN 2006 & DRIVING IN 2008 & I AM CONFINED TO A SCOOTER 24/7. MY LIFE IS WHAT IT IS & I TRY TO LIVE EVERYDAY TO MY FULLEST. I NO LONGER HAVE DARK DAYS AS I HAVE EMBRACED MY LIFE. LIFE IS TOO SHORT & MY MOTTO IS “THERE IS SOMEONE OUT THERE WHO HAS IT WORSE THAN ME”. I PRAY THAT YOU CAN FIND PEACE WITH YOUR MS.
So I read this, and what stood out to me is jealousy of others diagnosed with MS who aren’t as bad as you. I have often wondered if I was the only one who felt this…
I do the same. I feel like a broken record, everybody hates when the record keeps repeating. So we anguish in silence. I’m always available to talk friend.
I had four friends now down to 1. They were not friends at all. They didn’t understand what I was going thru with ms so I asked them to read about it. They didn’t. I guess they got tired of me saying I have two good days and three not so good days. I use a cane but my legs get very weak after a while. I am a women of 72. Went to bed one night fine got up and fell to the floor. Trying to deal with this. I think I am doing a little better.
Nicole,
I wish you almost wrote more often. You put our thoughts into words when we sincerely cannot at times or just to embarassed. I am thankful and thrilled to read every entry,sometimes I grab my tea because your article are a sure fire wordsmith! This disease is hard-bottom line and I am glad that you do not sugarcoat this illness. So many do not understand what we go through. Happy Thanksgiving and keep sharing,sending you hugs and much love!
A post so full of truths about living with MS. I gave up a while ago with the happy face, although I still find myself saying that ‘I’m doing fine’ when my body is screaming with pain. That’s what so many people expect instead of the hard truth.
Nicole, your words speak the truth for me as well. Everyone thinks that I am a brave sole. Well, as time has gone by, I have learned to be a bit more honest about my MS (with some people). Getting back to what you spoke about (people asking how you are) True friends care and they will listen. I have learned to tell certain people certain personal things. I have learned that some people (not my dear true friends) are just plain nosey. Take care
I was once told that when people ask how I am doing, “They’re just being polite, they don’t really want to know” I replied, “well, when I ask how someone is doing, I want to know, otherwise, I simply don’t ask.” I haven’t asked my mother-in-law ever again how she was doing.
I have learned that some can’t handle the truth but it feels much better to know who those people are, you then have one less thing to worry about.
I have tried many times to talk out loud the true reality of my burdens to those who have asked. It never fails that i need to bring the “happy face” out pretty quickly to make everyone comfortable and continue a conversation. Even the doctors don’t have time to listen or don’t want to. Very lonely.
Interestingly, I broke my blog silence to reveal, after more than a year’s absence, my own highs and lows in dealing with my challenges. Then I second guessed doing it, but I have received some positive responses. So have you, given the comments to this post. I think others appreciate honesty. Indeed, it may be a relief to see that others are willing to admit that they, too, are hurting the way one is hurting.
I called my post I Break My Silence http://lapazconvos.blogspot.com/2016/11/i-break-my-silence.html
Nicole. This is a very powerful statement of your truth. May God continue to bless you with strength and courageous! Happy Thanksgiving to you and yours!
“pain stained smile of hope.” – how perfectly blended together these words express exactly how I feel! Another great piece written from your heart and received directly to mine.
“Be who you are and say what you feel, because those who mind don’t matter, and those who matter don’t mind” -Dr.Seuss
Nicole,
Putting words to those thoughts will definitely frighten some people away, but that’s okay because you are lonely in their presence anyways. Not giving a voice to those feelings allows them to threaten the very heart of the woman they belong to. They are your words. Say them loud. Own them. We are listening and we hear you.
Love, Julie
I love your honesty! Thank you for sharing everything that you do. You help me to actually put words to my own emotions. Thank you!
Thank you my friend, for your brave honesty. Sometimes it’s easier to write our feelings rather than speaking them. But I hope that whether you write, or speak, or both, you find strength in your words. For I believe that those around you who choose to listen will hear. They may not ever be able to understand exactly, but they’re willingness to hear is a huge part of love and support. My very best my friend.
Never hide your feelings. It is okay so be scared. It is okay to be sad. It is okay to be angry. Allowing yourself to be honest about your feelings is okay. I hope you realize that you have many who love you and care how you feel. I know I do. Wonderful post.
Nicole, I truly understand how you feel because I used to ask GOD why can’t HE remove this thorn out my side like HE’S done for others when I prayed for their HEALING. At times like this, I wonder if I’ve said something wrong on my behalf, but stronger when it comes to others. In light of my daily struggles, I think about how far the LORD has brought me and the Footsteps PRAYER because HE’LL carry us when we can’t take care of ourselves. Nicole, I believe in our lifetime on this side, the GOOD LORD will HEAL our bodies and allow us to enjoy life again, but this time around it’ll be much better than we’d done before. Nicole, the LORD will allow us to appreciate life in a different light we’ve never known before, so my sister look towards the Hills, because there lies our greatest treasure!
~ Miracles & Blessings
Love this post! I can relate to the “brave face” we show others….it gets tiring after years! You are brave and strong and an inspiration xo
Nicole ,
This is my favorite post of yours because of the rawness and transparency. “My grace is sufficient for you , for my power is made perfect in weakness. Therefore, I will boast all the more gladly about my weaknesses so that Christ’s power may rest on me.” 2 Corinthians 12:9. This verse gives me comfort and hope it does the same for you. Happy Thanksgiving and Many Blessings Vivian