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This year’s journey with MS

It’s hard to believe another year is almost over. Tonight, a new year begins. As they say “out with the old, in with the new,” right? As I reflect over the year now gone, I realize I have experienced some truly wonderful, beautiful moments. Times that made me sing even though I can no longer carry a tune. Times that gave me great joy and created memories that I will hold on to for the rest of my life.

It has also been a year filled with pain, weariness and sorrow. Those are the times I wish I could forget but know I won’t because those moments are still a part of who I am. If nothing else, they have made me stronger. And trust me, I need all the strength I can get right about now.

Last year at this time, I was in the hospital for an entire month working to regain the use of my legs. And although the rehab was well worth it and the exercises I learned I still do to this day, my legs never returned to their full function. Does that make me sad? Angry? Fearful? Sure. But I’m not going to let my disability stop me from living even if I do it from my chair shaking my trembling fist in the air at MS.

My daily routine is different now. My needs are different. The things I consider important have changed. But me…I’m still me. No amount of ability or disability can change that.

Think back over your year. I’m sure you’ve had both beautiful and terrible moments. Times that make you still smile to this day and others that bring tears to your eyes. That’s called life…and you lived it. You experienced it. And although your experiences have changed how you do certain things, why you do them and when you do them, they haven’t changed the person you are. You are still you.

You may live life differently than you have in times past. You may need additional tools to help you get through your day. You may get tired and weaker faster than before. You may even do everything slower. But you…YOU are not your MS.

You are an amazing, beautiful, lovely, awesome, precious, one-of-a-kind, delightfully unique individual. There is no one else in the entire universe like you. You have so much to offer the world, even with a disability.  Don’t allow MS the satisfaction of stopping you from enjoying life or even from enjoying today.

As this year comes to a close, choose to be thankful for all the beautiful moments you’ve had and to use the terrible times as bricks to fill in the potholes along the way. I can’t promise you that the new year will be wonderful and void of any pain. But I can promise you that together, with each brick we place along the journey, we are building a path that just may ease the burdens of those newly diagnosed that come along behind us.

MS may only leave destruction in its path, but we are leaving a legacy of strength, resilience and beauty. You didn’t know you were doing all that, did you?  Don’t ever underestimate your value and worth. You are priceless and those bricks…well,  they just might be rubies and emeralds!

bucket

There’s a hole in my bucket

The world is good at pointing out what’s wrong with our lives. If you’re anything like me, you have buckets full of mistakes that can be pulled out at any time to show how imperfect you really are. The only problem is, my bucket leaks.

It is impossible to go through life without making mistakes. You can’t do it and neither can I. One thing you can count on is that you will mess up. You will make wrong choices. You will disappoint people and even disappoint yourself. Failure is normal. I don’t know why we try to cover it up and hide away our flaws and mistakes. Being less than perfect is just a part of being human.

To the world, our MS body is a failure. The nerves in our brain and spine have chosen to fail us causing difficulties we would rather not have. The mistake our body makes in destroying myelin is not our mistake. Don’t, even for a moment, think you have done something to deserve MS or that you have caused it yourself, because you haven’t.

No matter what happens today, don’t listen to that lying voice. You are not your body’s weakness. That is just part of the packaging you have to work with. Mine just so happens to be pieced together with duct tape and super glue at the moment. It seems to be working at holding things together for now, but I know there will come a day when even the duct tape will fail me.

Count each day you get through as a victory. You have had victory after victory already. Today will be another one. You may be bruised and limping crossing the finish line as the sun goes down, but you are going to make it.

Instead of focusing today on the things you can’t do, look at what you can. Take a break from the pressure the world puts on you to be perfect and simply be you…and never give up.

armor

Weary warrior still standing

I am not a resilient, non-wavering, always smiling, never hurting person. I have my moments of being overwhelmed and feeling as if Multiple Sclerosis is getting jabs in before I have time to duck. Just because I’m a positive person doesn’t mean I don’t hurt. That seems to be confusing for some people.

The reality is that some mornings I wake up and Multiple Sclerosis is just an inconvenience to my day, but other times it’s a monster that has me in a choke hold and won’t let go. I’m just telling it like it is. We all know it’s true whether we want to admit it or not. No amount of denial or positive thinking will change the devastation MS brings to our lives.

Sure, we do a pretty good job at slapping on a smile and pretending that everything is okay…stuffing our feelings and fears out of sight. But there always comes a day when we simply can’t stuff those things away any more and all our hurts and fears start leaking out.

And that’s okay. It’s okay to have a meltdown from time to time. It’s okay to feel. It’s okay to cry, scream, rant, or vent about MS. Think about it…you are living with a disease that is slowly eating away at your insides. You are going to have tough days.

Denial isn’t the answer to getting through a life with MS. It’s actually not the answer to getting through anything in life. What gets you through is facing the reality of what is happening and choosing to work through every crazy emotion that comes to the surface; every fear, doubt, hurt, pain, and heartbreak.

Where positivity comes in is not in helping you to pretend that MS doesn’t affect you. Positivity helps you to face MS head on by giving you strength to keep going. When you are able to make it through a day of tears yet still find a smile in your day, not because you are hiding from what’s happening but because it’s the only thing pushing you through to tomorrow, that’s the strength I’m talking about. For me, I draw that positivity from my faith. I couldn’t make it through a day without it.

You may feel like you’re falling apart, but I can see hiding in the shadows, a warrior. That warrior is you and you have not been defeated.  Don’t be concerned that your sword is a little crooked or that your armor is dented and tattered. That just shows you’ve been in the heat of battle. Wear those dents and scars proudly. You’ve earned every one of them…with honor!

Get your oomph back

Most of the time when in pain or dealing with an onslaught of symptoms, you don’t feel like doing anything. The simple act of getting yourself up in the morning, making your bed and showering to begin the day can be daunting. I guarantee you that if you chose to wait until you “feel like it” to get out of bed, it would never happen.

You can’t allow your feelings to win in life and determine your day. You wouldn’t get anything done. It takes strength to stand up to your feelings…especially the ones that lie to you saying that you can’t do something or that you are worthless and of little importance. I describe strength as that little bit of oomph you give when there’s nothing left to give.

There have been days when I have lost my oomph. It’s a slippery little bugger and an easy thing to lose, that’s for sure. I lost my oomph just the other day. I’m not sure where it went to hide…maybe under the bed, or in the closet, or under the refrigerator along with all the ice cubes I keep kicking under there when one falls to the floor. It hid really well though and took me a bit of time to find it.

You know where my oomph was? It was right here inside me the whole time.

Michelangelo, the great painter, sculptor, poet and engineer knew that all too well. When he was selecting marble to use for the statue of David, he had his choice of the finest marble around but settled for what was considered a ruined stone. All the other sculptors rejected the flawed looking piece of marble considering it to be of no value. Do you know why Michelangelo chose a piece others didn’t want? Because he looked inside the stone and saw a masterpiece. He found the beauty and strength within the stone.

You are strong and inside of you is a whole lot of oomph waiting to break out. You don’t have to be perfect or flawless…you just have to be YOU. The strong and beautiful YOU that you are!

A little bird told me

I woke up this morning to a bird singing outside my window. That’s great except he was singing so loud that I was awakened from the part of my night (rather early morning) when I was actually asleep. As I lay there in the bed not wanting to get up, yet unable to sleep, I’m almost positive I heard that bird talk. I could have been delusional from a lack of sleep—that’s always a possibility—but regardless, I heard it talk. Not bird talk either. It was “people” talk; lots and lots of people talk.

This bird, which I have officially named Tweets-a-lot, told me that you get discouraged some times. That you have days when you feel as if life has flipped your world upside down and inside out. That your plans, dreams, hope have all turned around, changing your future more than you thought could ever happen and have been causing you to feel overwhelmed.

You fight, you struggle, you cry, all in an attempt to wiggle free from a disease that is holding you captive, but you find no relief. People come along giving you an ole “pep talk” to help you out of this emotional roller coaster, and although you appreciate them taking the time to share, their words of encouragement seem to discourage you even more. You feel like a failure. Life has changed too much and you weren’t prepared for the change.

You spend hours and days looking back at what once was but the freedom is in the what will be. You have a future ahead of you, a world to be explored, people to meet and experiences to be had. You can’t do those things chained to the past and always looking back. You have to let go of what once was in order to live in the now and become a part of what will be.

So take it from me and the little bird outside my window…you’re hurting, not defeated. You’re broken, not destroyed. You have worth and tremendous value. You are perfect just as you are. Now is not the time to give up. Swim through the tears and refuse to drown.

you are brave

Find your brave

Dear Weary One,

I know your heart is heavy. Right now you are on the verge of tears…tears that have been collecting deep in the spaces of your heart and flooding over into your mind. You have met reality face to face and you don’t like it one bit. Multiple Sclerosis is your reality. It’s real and you feel it deep. You are finding yourself overwhelmed and Continue reading “Find your brave” »

I think we just broke the world

There have beens days when I have looked back at what used to be and wished life was different. I have even envied others who didn’t have a disability. What? I shouldn’t think like that? Sure that’s easy to say, but thoughts happen, and in my head they happen more than I care to admit. I don’t think you would want to live a day in my head. It’s kinda scary in there. I can think of some crazy ideas and have some equally wild woe-is-me moments.  Continue reading “I think we just broke the world” »