wheelchair

Tomorrow…life will change

No one likes to think about where Multiple Sclerosis may lead…not even me. But I can tell you from my own experience, to ignore all possibilities of progression is to live in denial. I lived there my first year after diagnosis. I refused to believe that my life was changing or would keep changing and that I needed to make adjustments.

I know how hard it is to accept that your body is fighting against you. I know how much you want to simply fight back and hope with all hope that you are one of the lucky ones that lives with a benign case of MS. And I commend that attitude. I really do. But denying that MS is a part of your life will only hurt you later on. Refusing to accept what is happening to you is setting yourself up for defeat.

The best way to look at things is from a perspective of…”Yes, I may have MS BUT as long as my body is still able to function, I will live each day to its fullest. Tomorrow that may change and if that should happen, I’m prepared for it. Maybe not mentally. Maybe not emotionally. But I have considered my surroundings and I’ve made preparations for the possibility of a life with limitations due to MS.”

You see, preparing for tomorrow is not living with a negative attitude. It’s living in reality. Somehow, somewhere along the way we have changed the meaning of positive and negative thinking.

It’s not negative to prepare for tomorrow. It’s not negative to talk about MS, your struggles or your pain. It’s not negative to think of ways to adapt your home or even start the process in making those changes now before they are needed. It’s not negative to begin saving up for a possibility of immobility.

Some of us don’t have the luxury to make those preparations because life hit us too hard, too fast. If you can…begin making the preparations now. You will be glad you did. Besides, what could it hurt?

Enjoy today, live in the now, savor the sweet memories you are creating with those you love, but don’t ignore the possibilities of tomorrow…good or bad.

Cracks in the sidewalk

I think I’m cracked

Hopscotch was a favorite game of mine as a kid. We would draw the board with chalk on the sidewalk and play for hours. There was one area of the sidewalk, though, where we didn’t play the game. A tree had been growing next to the concrete slab in the sidewalk, and as the tree grew bigger and bigger so did the roots which caused cracks and lumps in the sidewalk.

We would skateboard across the cracks and ride our bikes over them, but you had to be careful not to hit them in just the right spot or you would fall to the ground with a thud. I had my fair share of bruises from those kinds of falls.

Cracks in the concrete are reminders to me that you can fall apart no matter how strong you think you are. When I look back at my life, I had great expectations. My career was flourishing and my future plans were laid out. I was strong, achieving great things, moving forward, and they BAM… a crack showed up in my life called Multiple Sclerosis and changed everything. It knocked me to the ground and left me in a daze wondering “what just happened.”

MS changed everything. At first, I couldn’t believe what was happening. It was a hard thing to come to terms with. Then as the months went by and the progression continued to worsen, I realized that MS wasn’t simply going away. No amount of denial would force my life back to the way it used to be.

Change is hard. We all hate change, but life is constantly changing and it’s important we learn to shift with those changes. It’s different when we have to shift our meal preference for the day or shift the places we go for vacation, but to shift your entire life due to a chronic illness…that just doesn’t seem fair. But I don’t look at life as fair and unfair. I see it as an opportunity to grow and become a better person or to sit stewing in anger and become bitter.

Am I going to let MS defeat me or am I going to allow something beautiful to grow from my life? Cracks in sidewalks can grow weeds or flowers and I want mine to grow flowers. It’s a choice we all have to make.

Don’t let that crack in the concrete change you to the point that you focus on the wrong things. Now is the time to change with the changes, but in a good way. MS will affect how you do things, but never let it change you into a negatively focused person.

There’s enough negativity in the world already. Find a little ray of sunshine and step into it. You may be cracked, but beauty can still come out of you if you let it. I believe in you.

What would you do?

Someone once asked me, “If you had one day left to live, how would you spend it?” At first that seemed like an easy question to answer. I started to throw out silly things I had always wanted to accomplish like snorkeling in the Caribbean, eating an entire bag of pistachios in one sitting, having tea with Ellen, and participating in the worlds largest water balloon fight.

But the more I thought about it, my focus shifted to family and friends. No matter how many crazy things I could think of to do, spending time with the people I love and admire the most was what really mattered.

I decided the day would be filled with laughter, lots of pictures, reminiscing, chocolate and coffee, conversations, letting each person know I love them, hugs and lots of them…nothing extraordinary. It was really all the things we should be doing, but sadly don’t.

I discovered during my pondering that a majority of us tend to put the important things off because, well, there’s always tomorrow. We get so busy with life that we miss out on the precious moments we should be sharing with one another.

I don’t want to live like that. I want to live each day doing the things that are important to me and for each person in my life, that way I won’t live with the regret of what could have been.

I want to live each day as if it were my last…filled with lasting memories and lots of smiles. What will you do with today? What are you waiting for?

Watch this video. It will put everything into perspective.

Who are your friends

Who are your friends?

It’s important to value your friends. But who are your friends in the first place?

If the person you call friend makes excuses every time you ask for their help but is always pulling at you when they need something, then you are wasting your time on that friendship and should maybe take a step back to reevaluate things. You should be there for one another. That’s what makes friendship so special. To me, a friend means that the person will be with you through thick and thin…both the good and the bad.

Online, it sounds cool to say, “I have 1,200 friends.” I have even heard people bragging about how many friends they have on Twitter and Facebook alone. But those aren’t friends. I think a better word to describe them would be contacts, but that doesn’t sound as appealing, does it?

We have a tendency to confuse friends with contacts. We find it cold to say acquaintance, colleague or even comrade, so we choose to call everyone our friends. Because of this, the word friend has lost its importance…its value. I have learned that only a few people will truly become your friend. These are kindred spirits that last even when times get tough.

True friendships don’t just happen and they aren’t maintenance free. They take work and they build over time. Sadly when a chronic illness comes into the picture, all those people we thought were friends disappear. I think losing friends should be added to the symptoms of each chronic illness out there because it happens every time.

Maybe friends leave because we require more support. Maybe it’s because we are no longer able to go and do as freely as we did in times past. Maybe it’s because the realness of life is too much for them to face. But regardless of why, if they walk away, they weren’t real friends to begin with. Let them walk.

Someone has said that if you can count your true friends on the fingers of one hand, don’t take them for granted and if you can count them on one finger you are truly blessed. The tough times can’t break true friends apart or tear them down, it strengthens the bond and deepens the roots of friendship.

Do you have a friend like that? Someone that, even if you fall flat on your face, they will offer a helping hand to pull you back up and dust you off; someone who will smile with you, laugh with you and cry with you; someone that holds your heart with the most gentle of care knowing how fragile it truly is; someone that will stand beside you when everyone else has walked away?

Don’t let another day go by without thanking them for being a friend…a true friend. Don’t let another hour, minute or second go by without doing something to show them just how much you appreciate that they are your friend. Send them a letter, an email, or give them a call to just say, “Thanks for being my friend.”

brain

My wonky, mixed-up brain

Brain Fog: That moment when you confuse people, places and things with apples, oranges and grapes. It could be something as simple as starting the coffee pot without the coffee in it or as crazy as forgetting who you are and what day it is.

Once I had a huge brain fog moment. I fell asleep around 4:30 PM after I climbed in bed for a late nap and was awakened at 6:00 PM because of some loud booming noise out my window. When I turned and looked at the clock, I didn’t see the “PM” part and thought it was morning.

I got up, took my morning meds (afterwards, I checked to make sure nothing bad would have happen because of doing that), took a shower, got dressed, then drove myself to an appointment.

I remember thinking how odd it was that morning rush hour traffic seemed super light. When I pulled into the parking lot for my appointment it was basically empty at that hour, but I just shrugged it off as my imagination. I got out of the van, went to the front door and of course it was locked.

It was then that I pulled out my phone thinking by chance I looked at the clock wrong. My appointment wasn’t until morning. I laughed so hard once I realized what had happened, texted a friend about my huge blunder and drove home with a smile on my face.

That was a first for me, to confuse time so badly without realizing something was wrong with my discernment. I’m sure you have some doozies as well. MS is sneaky and plays with our brain muddling up thoughts and words.

Choose to laugh in those moments in order to ease the discomfort of doing something that others find silly or out of place, or downright wrong. It’s a whole lot better than crying.

I hope I made you smile today. I give all the credit to my wonky, mixed-up brain.

I never thought I would be living with a chronic illness

I never once thought I would be in my 40’s living with a chronic illness, surviving on Social Security because my disease progression forced me out of a career I loved, staying home much of the time because of mobility and accessibility difficulties, requiring regular visits from a home healthcare nurse to help me manage everyday life, and losing friends left and right.

My plans were so much bigger than that.

I dreamed of greatness. I was going places. I was doing things. I had arrived.

It’s important for everyone to understand that our journey in life can change at any given moment…for the good or for the bad. It will be filled with victories and defeats. It will twist and wind through the mountains as well as plummet into sink holes and ravines.

Yes, the journey is important. It’s great to have goals and plans, to be able to reach for something bigger than yourself, to dream. But what I have found to be even more important than winning and losing, bigger than the highs and lows in life, is learning how to handle those victories and disappointments. That’s what matters. It’s not the actual winning or losing that counts, it’s how you win or lose.

I grew up in a huge football town. We took winning seriously and losing hard. When our team won we would have victory parties in the town square with everyone excited and partying through the night. When we lost, although the atmosphere would be more solemn and there would be a lack of cheers through the crowd, we still gathered and celebrated in our loss.

I learned how to win big and lose gracefully.

So when life threw me a curve ball and brought an end to everything that I thought was wonderful, instead of screaming “Why me?” or becoming bitter and angry at the dramatic change, I shifted with the change to find something to celebrate…even in my loss.

Sure, I lost my mobility, strength, career and many friends, but I gained something through it all. I found hope in the darkness. I developed strength out of weakness. I learned how to smile in the pain.

How did I do that?

I decided that regardless of the disease that is ravaging my body and changing my life, that I would find something each day to be grateful for. It may be something little and at times minuscule, but it’s still something.

Today I’m grateful that I woke up to clear skies, birds singing outside my window and a fresh cup of coffee to be able to sip on as I write to you. I wish it was something more than that like I won the lottery or multiple sclerosis was cured while I slept, but I’ll take what I can get.

There is always something to celebrate in a day. Find yours and choose to rejoice in the small victories rather than wallow in the defeats…even if you find yourself lying in a hospital bed, sitting alone on the couch or trudging through rush-hour traffic.

Hold your head high and know that regardless of the speed bumps, the pitfalls and the unexpected turns, you can still find joy in the journey if you look hard enough.

Be the best you that you can be

Have you ever made it through your day when suddenly the thought hits you, “What did I do today?” Then as you contemplated the answer, you realized you don’t actually remember what occupied your time. You even have periods of the day you lost either due to naps, periods of brain fog, or MS moments.

Those kinds of losses, or should I say feelings of defeat, have a tendency to weigh heavy on a person’s thoughts and can even cause you to feel less of a person or useless. After all, you know how much time it should take you to shower and prepare for your day, but even something as simple as that has become difficult to manage. Your meaning of accomplishment has changed over the years from scaling a mountain, to climbing a flight of stairs, to walking ten steps, to getting out of bed.

But no matter what you are able to get done today—whether it’s running a marathon, walking to the mailbox, or making sure the couch doesn’t get lonely—as long as you do the best you can in all that you do…that’s what matters. Your best will be different than mine and may be different than your best was last year, last month or even yesterday.

You can’t spend your day muddling through regrets, weighty thoughts and unnecessary worries. You’ve heard the phrase seize the day? Well, this is your day to seize. Take ahold of today and make it yours. Shake off everything that is keeping you from simply being your best and actually living. Shake off those feelings of doubt, defeat, and disappointments.

You are not a burden because your best requires help from others, and you are not a failure because it takes you longer to finish just about everything you do. Just do your best and don’t allow your mind to wander thinking about what could-a, should-a, would-a been. Today may not be your best day, just don’t let that keep you from being your best in it.

island

Sometimes I wish I could just run away

Life isn’t fair. It’s tough and filled with plenty of bad things. I go through periods of time when I simply want to get away from it all…no distractions, no phone calls, no text messages, no people, no MS, no anything. It’s at those times when I will curl up in my comfy overstuffed chair, turn my phone off and do absolutely nothing.

I know it seems impossible to be able to do nothing because even doing nothing is doing something, but somehow I manage to do it. Wait a minute, maybe I really am doing something when I think I’m doing nothing but since my brain scatters my thoughts I forget the something I was doing which turns it into nothing. Now there’s a thought to ponder.

When I step away from the mess that is overtaking my life into a place of solitude, I come back better focused and able to get things done. Sometimes it’s takes just 5 minutes of being away to regroup my thoughts. Other times it’s more like 30 minutes, an hour or even a day. But that pause does something magical and helps me to tackle even the hardest of tasks.

I can remember the times when my workload would become intense at my job. The pressure, the stress…it would become overwhelming. When that happened, I would walk away from my desk and lock myself in a bathroom stall down the hall from my office to just pause and breathe. That was the only place I knew I could truly be alone and get away from everyone and everything. Somehow time stood still for me in the bathroom. Other times I would just go for a walk around the building or to the kitchen to get a fresh cup of coffee. Anything to get away momentarily so I could better focus.

I know that sounds weird to some people, but short breaks like that really help. We all need a place where we can get away from the craziness in life in order to simply breathe. The bathroom may not be the place you choose. For you it may be a moment of solitude in your car, or out taking a walk through the mall, or hiding in your bedroom closet under stacks and stacks of laundry…but regardless of where it is, it’s important to take that time.

It would be amazing to be able to take a vacation to some remote island anytime you needed a break, but that kind of thing just doesn’t happen so you have to create your own island of escape right where you are. Today my island is my alone time on the couch as I think about spring time, butterflies and picking fresh flowers. Something other than MS, medical bills and my to-do list.

Don’t feel guilty stepping away to take a pause. Take the time you need even if that means telling someone “no.” Take charge of your day…only make sure you always keep an island close by. A cool breeze, amazing view and some drinks with umbrellas wouldn’t hurt either.

It’s a new year

It’s a new year, a new day, I have a fresh cup of coffee…same ole body.  Hmm, that didn’t go as planned.  I guess you can’t have everything you wish for. I tried wishing for a million dollars too but that didn’t work out for me either. I still have the same bills, house payments, piles of dirty laundry and dishes to clean.

I think the new and the old have run into each other and crashed into a pile on my bedroom floor. It even tried pulling me down there the other day. That accounts for the twisted ankle and bruised knee I now have.

I know it’s not easy to find the good around you when the tears come so easy, but there is good out there. Being diagnosed with MS isn’t the end of the world so don’t let it ruin your year before it even gets started. There is a light shining through the darkness. And no, it’s not the light of a train barreling down the tracks heading in your direction. It’s hope.

Regardless of everything happening in your world and the weakness you feel in your body, choose to go into today filled with hope. Hope is the very thing that will get you through the struggle and keep you going when everything else around you appears to be falling apart. Hope that in spite of multiple sclerosis you will accomplish great things this year.

I hope for a cure.
I hope for strength.
I hope for less pain.
I hope for laughter.
I hope for understanding.
I hope for pancakes, lots of coffee, and chocolate…definitely chocolate.

Out of everything I could hope for, most of all…I hope for hope.