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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!

The power of positive thinking

Being positive in life is extremely important. I have seen its effect in my own life…the strength and determination it has built in me, and the courage it has given me to never quit no matter how tough things get.

But what does it mean to be positive? Does it mean you smile all the time? Does it mean you sit around telling jokes belting out volumes of laughter? Does it mean you never have a bad day, never cry tears of pain, are never fearful of tomorrow, or do all you can to pretend MS isn’t a part of your life?

No…being positive has nothing to do with how much you fake a smile or about the warm fuzzy’s and feel-good moments. Those things will fade away over time and leave you wondering how you’re going to be able to cope with today’s reality of MS. The reality that hits you so hard you get knocked off your feet. MS does that to us all at some point.

If you aren’t careful, the tears will fall, stress will build, fears will loom and your mind will wander into a world of negativity. It’s a place you don’t want to be. Depression creeps in ever so slowly and you find yourself drowning in the pain and darkness.

What do you do? How do you find a positive place there in the dark? What does being positive even look like?

You have to purposely choose to step out from the shadows and move towards hope. Hope that tomorrow will be better than today. Hope that you can make a difference in someone’s life. Hope that a better you is in the making. You have to pursue it, going after it with every breath you have, keep going even if it hurts.

Positive people still cry, tremble in fear, worry, and have bad days….but in all of the mess that surrounds them, they find a rainbow, a butterfly, a sunbeam, hope. Even though you are in the toughest place you’ve ever been, there is a possibility of wonderment and beauty. There is a hope that things will get better.

I can not convince a negative focused person to be positive. I’ve tried and it just doesn’t work. It seems negative people become angry at just the thought of trying to find something good in a time of misery. In their mind the two can never coexist, but it can happen.

If you will allow yourself to step out from the shadows, you will find the impossible can be made possible. The world could be crashing in all around you and yet your heart can find rest. That’s the power of positive thinking.

I want nothing more than for you to experience that kind of calm, happiness, and hope. It takes work. It takes purpose. It takes choices. And I know you can do it. Just one spark of hope can change your life forever.

Find something that fills you with passion, and go after it. That may mean learning a new language or writing a book. It may mean inviting friends over for dinner or cheering someone up who’s going through a difficult time. It may mean doing something to make a difference in a crazy, messed up world. It may mean letting go of the negative people in your life.

Whatever it takes…do it. Change your focus and you change your life. Choose hope. There is a great future ahead of you waiting to be discovered. Step into it.

wand

I wish I may, I wish I might

I’ve been staring at a blank page with pen in hand for over 30 minutes unsure of what to share this morning. Most days my thoughts tumble onto the page so easily, but this morning my brain seems to have decided to take a vacation. It didn’t even ask for permission. That’s simply not fair. I would have loved to have taken a trip with my brain to Hawaii, or Australia, or Timbuktu. I’ve always wanted to go to Timbuktu. Now, that’s a fun word to say…Tim-buk-tu! That fits right up there with tutu and hullabaloo.

I wish I could wave a magic wand in the air to make our crazy brain fog moments disappear. Or better yet, to make Multiple Sclerosis disappear altogether. Talk about a wonderful day…now, that would be the most amazing day ever. A day worth getting out of bed for and shooting off fireworks followed by a parade, and lots and lots of balloons.

Even though today isn’t that day, it’s still a day worth living. Why? What reason is there for getting out of bed when all you see are difficulties looming, dark clouds forming and flood waters rising?

For me, I flip back the covers and step out of bed each morning because I’m on a mission. I love sharing my life and heart with others, seeing them encouraged and uplifted through my own life experiences. I love making people smile in hopes that they forget, even if just for a moment, that life is hard. I love helping people push through difficult times and seeing their victory dance, even if it’s only a small one.

I get out of bed each morning because I’m on a mission to help a world of MSers find their way through the tough times in hopes that they choose laughter over tears and search for rainbows rather than lightning bolts. What’s your why? Why do you get out of bed each morning? What is it that keeps you going when times get tough?

Find your why and hold onto it. Let it give you the strength you need to face the day. Today may be a difficult day, but I am confident you are going to get through it. You are strong even though your body is weak…stronger than you realize. MS is not going to stop you today. It may be rearing it’s ugly head but you are going to make it.

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.

believe

I believe in you

I didn’t get this far in life alone. I had help…and lots of it. The support of family, friends, teachers, coaches, doctors, pastors, neighbors and strangers were invaluable. At times when I was impatient, they helped calm my emotions; when I was filled with fear, they showed me I was stronger than I could have ever imagined; when I felt hopeless, they encouraged me; when sad, they made me smile. I couldn’t have made it by myself. Continue reading “I believe in you” »

Every day seems like moving day

Packing up your house and moving hundreds of miles away can be a daunting task for a healthy body. Add Multiple Sclerosis into the mix and it can become terrifying. That’s not an over exaggeration either.  Anyone who has moved can testify to that. The energy it takes to box up you entire life, load it into a moving truck and then unload it a few days later, wears a body out. It is my job now to make sense of the mess and boxes as I work to put my life back into order.

It’s kind of the same thing when diagnosed with MS. It’s as if one day life was going great and plans were set…then bam, it’s time to pack up and move from your normal, ordinary way of doing things into a new way of living filled with uncertainties almost on a daily basis. Sometimes those shifts are easy to make. Sometimes they are the hardest decisions you could ever imagine possible.

I still remember the day I started using a cane to help me walk. I was so stubborn at first. I knew I needed something to help me because I was stumbling and wobbling about, but I just couldn’t break down and get a cane. My doctor was the one who made it clear I needed to get one. She told me that a broken bone was not near as easy to fix as broken pride. Boy was she right.

I have had that same struggle with each major life changing moment along with way due to MS progressing and causing me challenges. Going to a walker was another huge move that I found hard, then a wheelchair. The wheelchair was a really tough decision.

I have also had tough changes to make around my house to make sure I’m living as safely and as comfortably as possible. Things like shifting to using lighter silverware to eat from since my old set of forks and spoons were heavy. Or placing my dishes on lower shelves for me to easily reach on my own. Or having grab bars installed in the shower. Or adding a ramp to the entrance to my house.

There are so many changes we make as this disease progresses. One thing I have learned over the years, MS will shed you of your pride one way or another. It gets chiseled away little by little. You would think by now I would be pride-free, but I still have a hard time asking people for help. Not in everything. But sometimes I still find myself just wanting to do things on my own…even if I have to struggle in the process. And I don’t think that’s a bad thing.

It’s okay to have a stubbornness in you that refuses to give up. It’s okay to ask a friend to allow you to do something even if you struggle in the process. It’s okay to try, try, and try again all on your own. But it’s also important to know when to ask for help. There’s nothing wrong in asking someone to help you do something. The asking part gets easier, trust me. And besides, from my experience, people really do want to help. Many times they just don’t know what they can do so they pull back and do nothing. When you open up and become honest with others about your true, genuine needs, most are ready to jump in and be a support. We just have to ask.

And to the ones that aren’t a help…you learn who they are fairly quick and that’s when you start to lighten your load. I’ve throw a few boxes off the truck in my lifetime. Make sure the people around you are a support and not a hindrance. It’s okay to lighten the load. I’ve had to shed a few people from my life because they caused me more trouble than helped.

Moving is tough…but it’s also rewarding. You learn who your true friends are in the process. Not may people are going to carry a heavy couch up three flights of stairs for you. Hold onto those people and be sure to let them know how much you appreciate them. Sometimes we forget to tell them.