By Penelope Conway
Chaos to someone living with multiple sclerosis is different than chaos to a healthy person. Our kind of chaos includes a world of broken nerves hidden deep inside our bodies. The only problem is that there seems to be a sign posted at the entrance to this grand attraction that reads “No admittance to the general public.”
We have no way of showing people the latest expedition or the mammoth death-defying rides that exist here, complete with loop-de-loops and upside-down rails. We try to explain how they feel and what they look like—those weird moments when the walls begin to move and the floor trips us up—but somehow our explanations of what is happening in our world is met with disbelief, blank stares and “it can’t be that bad” statements. But, you see, it can be and it is.
Our world is alive and constantly changing from one day to the next, and sometimes even minute by minute. Today we may have an electric shock jolt traveling down our spine, the carpet may try to trip us up, and gravity may want to get in on the fun by taking us down for the count. But we are valiant warriors and we fight on.
It’s not easy navigating through two different worlds at once, but we do it every single day. When the sun sets and our day is over, we discover that we have accomplished more than most people do at the end of their day because we have not only navigated through impossible obstacles and overcome amazing feats, but we are ready for a new day.
Our mission each day is to simply get through all that’s in front of us no matter how bizarre it may be. Step by step, moment by moment, day by day, we survive.
It’s not always that easy to do either. My emotions have this tendency to run wild on me. I find myself crying for no reason, laughing at ridiculous things and getting mad at nothing… absolutely nothing. My brain had mixed things up and doesn’t know the difference between a laugh and a tear.
I wish I could say it was just me being me, but multiple sclerosis is at fault. Somewhere, deep in my brain, the area that controls my emotions has been damaged. The communication of my feelings and the need to express them is a complete mangled mess.
Life changes a lot with MS. It changes in ways we expect and also in ways we never knew possible. Sometimes those changes happen all at once and other times they simply pile up, little by little, until we find ourselves surrounded by a sea of change.
That’s me at the moment… overwhelmed in a torrential sea of change. It feels like my world has been knocked off its axis and is bouncing around inside some perpetual game of universe pong. I just want things to slow down a bit. It doesn’t have to stop entirely, I just need the brakes put on and for things to stop spinning out of control for awhile.
I’m sure you understand the feeling all too well yourself. Today you may be facing a boatload of MS changes, financial struggles, relationship problems, emotional chaos, or a little of them all wrapped up into one. That’s a lot for anyone to have to face.
I hope you know you aren’t alone in this journey. I may not understand your exact struggles, but I understand what it feels like to ache so deep inside that you can’t put the pain into words; to dread a new day because you just aren’t sure what the day is going to bring; to wake up in the morning wishing you could just go back to bed and wake up from the nightmare you find yourself in; to watch your dreams get crushed and feel as if you will never be able to dream again.
I mean it when I say I’m standing with you. You can vent, you can cry, you can spill out every emotion that’s been bottled up inside and I won’t judge you nor look at you with that weird blank stare so many of us see on others faces when we try to explain what’s happening inside.
Yes, you may be living with multiple sclerosis, you may have a crazy mixed-up life, your emotions may go bonkers on you, your day may be spinning out of control, but regardless of how things look today, we are in this together and together we are STRONG.
Life is tough. Anyone who says otherwise isn’t really living. But even though we face some awful things in life, there are great things happening that show up and bring relief to the pain. And wouldn’t you know it, they happen at the very moment you feel as if you’re about to break.
Things like a “thinking of you” card in the mail from a dear friend, a fistful of weeds and smiles from a child, your favorite song playing on the radio at just the right moment, a piece of chocolate, ten minutes of silence, coffee with a friend… they are happening all around you, you just have to pause for a moment to see them.
Today may be a tough day but don’t let the struggle hide those sweet moments that are happening in your life. Pause and breathe. Find something to be thankful for. Look around. There is some good in the chaos, in the moment when you are overwhelmed. You are going to make it through this storm. Hang in there and let those sweet pauses give you strength to get through the day. You’ve got this. Pause and breathe. It’s part of the recipe for a good day.
*Penelope Conway was diagnosed with Multiple Sclerosis in November 2011. She is the author and founder of Positive Living with MS (positivelivingwithms.com) where she uses humor and her own life experiences with MS to help others navigate this unpredictable journey. She believes that staying positive and holding onto hope is the key to waking up each morning with the strength to get through the day.