“When we dream alone it is only a dream, but when many dream together it is the beginning of a new reality.” ~ Friedensreich Hundertwasser
Most people have no idea what you are going through. They can’t see your pain. But I see it because I’ve been where you are. They think you’re crazy. They say it can’t be that bad. But I know there’s a MonSter living inside of you. I believe it. I understand.
Sometimes it takes you to a scary place. I’ve been there too. Trapped in a dark room, behind a locked door in a murky part of my mind. Kneeling on sore knees. Staring out a keyhole, straining to see some light. Searching for an escape but being distracted by blurry vision, fatigue and foot drop.
I know you are asking how did I get here. The day the MRI revealed your fate, you did everything right. You reorganized your life. Regular doctor appointments, healthy eating and exercise became a norm. You said to everyone, “I have MS. MS doesn’t have me”. You hoped for the best and prepared for the worst. But when the worst happened, you couldn’t think. You couldn’t breathe. You were numbed by the reality. And now you are not sure what to do.
But don’t worry. I’m here to help you. Grab my hand and focus on me. I’ll be your light. Shining a path to a little relief. Together we’ll beg the universe for deliverance from the madness.
I’m not claiming to have a cure. But I can answer questions and I will never lie to you. I realize having MS is a rough reality. But I also know the truth is the smoothest thing that can touch your skin. And acknowledging the truth will reveal a life full of miracles.
So let’s talk and laugh about this crazy journey. We’ll curse the MonSter until its dead. We’ll be silly and dream of being in outer space. Soaring where stardust floats visions in our minds of living MS free. We’ll rejoice in the splendor of being alive. And chuckle at memories that feel like feathers falling from heaven tickling our souls. This grand hallucination of hope will provide you with the strength to cope. And every time you think of me it will be a blissful reminder that, you are not alone.
Thank you so much for this!!! I was just recently diagnosed with MS 2 months ago and for so long I was denying the fact that anything was wrong with me. Even when my legs and hands went tingly and numb, and my eyesight started to fail me I denied it. I denied it up until my neurologist showed me the MRI of my spine showing hundereds on lesions along it. So much so that it just looked like one big lesion from the base of my skull all the way to the bottom of my spine. The worst my doctor has seen I guess! Your blog is a nice light to the darkness that has become my new normal and I am blessed to have found this! Thank you for being so raw and honest with your posts and I cannot wait to read more!
I have read and re-read this post so many times. Beautifully written by someone who truly understands the MonSter!! Thank you for leading the way for so many of us trying to live a full & complete life!
God bless you, Nicole
That was beautifully written and inspiring
First time commenter on your blog- your blog which means so much to me. I’ve bookmarked this post to revisit when needed. Thank you so much, words really can’t express. And although I’m not actively posting and commenting online, and I don’t know you in person, you’re not alone either, Nicole. We’re all in this together. Thank you so much for being a beacon in this new, scary place.
Beautiful. I’m so glad to know you are along for the ride. If we all hold hands, maybe we can find some stability. MS hit me fast and hard, and I’m not sure I ever got my feet back underneath me. Knowing that there are people out there in the world who know what I mean is a wonderful support.
This really touched my heart. Thank you.
My thoughts exactly. You’re humming along one day (“normal”) and get hit with part of your body in a constant state of electrical shock but you smile because it’s easier for everyone else that way. Showing signs of weakness are not an option until one day the smile you carry becomes heavy and your hands become clumsy. I found “My New Normals” through “I’m not drunk I Have MS” FB pages at a time the smile could no longer be carried. Thank you for reminding me to laugh and the best way to handle the surprises is to find the humor.
Nicole, thank you this post – turns out it was just what I needed today. And you are not alone either…
Amazing!! Thank you!
This just what I needed to read on a day that just seems like no one wants to understand.
Hi Nicole thank you for your story.
I’ve been going though my journey and its
only been in the last little while that I have
come to accept my MS diagnosis.
From that I am a lot happier and that this is
the new normal. Its not something that I wanted
but that I can’t change. (the sun just came out
when I was typing).
Staying positive and glad to read stories like yours.
We are not alone.
Thank you Nicole- just thank you. You are beautiful.
Thanks for sharing. I really needed to hear this. Dealing with blurred vision right now. Hope it gets better
OK, you have brought the tears. Every day I can’t help asking,
“How the hell did this happen? I did everything right.” How could it all go so wrong?
May God continue to bless and strengthen you Nicole! You are indeed blessed to be a blessing to so many people.
Bless you, Nicole. You are a beacon of hope.I needed this so badly at this time.
thanks for starting my day in this most amazing way…
Oh Nicole I so needed to read this right now. Things have been tougher at work and even though I work very part-time I have made the decision to tell my supervisors I have MS and cut down my regularly scheduled hours and apply for disability. The thought of doing this is both a relief and scary. I pray for you all the time and all of us caught in this madness called MS. God bless.
This is so poignant, it makes me weep. Thank you for this. We are in this together.