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Comparing yourself to others is a losing battle

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Either way you look at it, comparisons tend to be bad for us. They are bothersome at the very least. From birth our parents start comparing us with other children. Simultaneously, our teachers and coaches compare us with other children. We compare everything and anything these days. We compare our incomes, our houses, cars, children, and yes even our illnesses. In doing so, even if we feel we win in comparison, WE LOSE!

Just as we are all unique and cannot be compared, it is the same with illnesses. There is NO illness worse than another. ALL illness is terrible. When a person compares someone who has multiple sclerosis with someone that has another illness, they are speaking from a lack of understanding and through filtered lenses. No one can know what someone is experiencing unless they crawled into that person’s body to feel what they feel, and experience what they experience.

One of the most awful experiences is when you share your illness with someone and they proceed to tell you how their approach to MS or some other ailment is the only way you should be living? That you need to adjust your diet and get rid of meat, diet soda, and gluten. That because you aren’t living like they say, you are doing it all wrong? That if you only _____ (fill in the blank) you would feel better?

It can get extremely frustrating when someone assumes they know your body and your journey better than you do. Comparing illnesses or even progressions of the same illness between two different people never works out. When someone does the comparing like that, they have fallen victim to comparisons.

The problem with focusing on other people’s achievements is that you will never measure up. It can make you dissatisfied with your own daily activities and even gives you less strength to keep working towards greater things. Comparison is a thief of joy.

Instead of seeing how you measure up to another person, analyze yourself and ask yourself how well you are doing with the things you need to be doing for yourself. The only one we should ever compare ourselves to is ourselves…

Stay focused on your goals and what you want for life. There is only one of YOU in this world, don’t waste time comparing yourself to others. Instead, make your life count. Striving to live a life that is authentic to your own personal goals.

In the process, don’t get caught up in the envy of another person’s successes or goals attained. Envy is the emotion that you experience when someone else has or does something that you wish you could have or do. If another person gets positive results from a medication or a treatment that you wanted, it is natural to feel a jealous twinge. Instead, consider sending a note of congratulations and enjoying their success.

Focusing on gratitude helps, because much of what you’re grateful for involves the people around you… individuals who have looked out for you, mentored you, and cared for you when you were are your worst. That makes gratitude a wonderful antidote to negative comparisons. It reminds you that there are a lot of people around you who are contributing to your success and who love you.

You are loved for who you are. Don’t you ever forget that.

I’m not broken, a burden or an inconvenience

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In today’s world, we are constantly being made to believe that something is wrong with us because we have multiple sclerosis. Those of us using walking aids, wheelchairs and braces for some reason are seen as broken and a burden. We move much too slow, drop things way too easily and need help way too often with even the simplest of tasks for most people to bear. And those with MS who don’t need visible help…the bathroom issues, pain, emotional moments, and memory difficulties are viewed in the same way: as an inconvenience for others.

I can remember when I first started using a cane. I tried to hide it from people. I really did. I would wait until the last moment possible to get my cane in hand in order to walk across the parking lot of the grocery store. I would try to keep it as close to my right leg as possible thinking it would make it less noticeable. It didn’t, but I tried anyway.

The walker was much harder to hide. I felt like I was pushing around a truck with caution signs and flashing lights. “Look at me, here I come! Beep, beep, beep.”

The responses it invoked in people was not always comfortable to handle either. As soon as someone saw me with a walker, the questions began…too many questions, and ones that required exhausting explanations. I wasn’t ashamed of MS, I was simply tired of the constant “What’s wrong with you?” questions met with “I know what you need to do to make MS go away” responses.

Sometimes for me, the easiest response was lying and saying “It’s a football injury.” That was always met with a smile and a nod…even though I’m a girl. What? Sports injuries are more readily acceptable than a chronic illness?

Now that I use a wheelchair, it’s a bit harder to hide my walking difficulties but I’ve also gotten better at handling people’s stares, questions and comments. It still gets to me at times, but I’m okay with most people’s responses. I’ve come to understand that the negative and insensitive comments made by people simply show who they are as a person and has nothing to do with me.

One of the most important things I have learned is that multiple sclerosis has not left me broken. Cracked? Maybe…but I think I was cracked way before MS came along. If anything, it has opened my eyes to seeing the real me and to seeing how broken this world really is.

Yes, it takes me longer to do just about everything from checking the mail, to sweeping the floor, to getting out of bed. But even though I may not be fast at doing things, I can still get to where I’m going. It may take some creativity and some extra help, but I make it every time.

Ultimately, it would be wonderful to live in a world where disabilities took a back seat to who we are as a person. That day will probably never come, but regardless of what the world thinks, I want you to know that you are not broken or a burden.

You are a beautifully patched together work of art covered in scars yet filled with amazing resilience and strength. Your scars display an amazing roadmap of courage. You are not MS, a cane, a wheelchair, or even an emotional mess. You are incredibly you! You are important, needed, and wonderful just the way that you are…and don’t you ever forget it.


“Why Not You?

  • Today, many will awaken with a fresh sense of inspiration. Why not you?
  • Today, many will open their eyes to the beauty that surrounds them. Why not you?
  • Today, many will choose to leave the ghost of yesterday behind and seize the immeasurable power of today. Why not you?
  • Today, many will break through the barriers of the past by looking at the blessings of the present. Why not you?
  • Today, for many the burden of self doubt and insecurity will be lifted by the security and confidence of empowerment. Why not you?
  • Today, many will rise above their believed limitations and make contact with their powerful innate strength. Why not you?
  • Today, many will choose to live in such a manner that they will be a positive role model for their children. Why not you?
  • Today, many will choose to free themselves from the personal imprisonment of their bad habits. Why not you?
  • Today, many will choose to live free of conditions and rules governing their own happiness. Why not you?
  • Today, many will find abundance in simplicity. Why not you?
  • Today, many will be confronted by difficult moral choices and they will choose to do what is right instead of what is beneficial. Why not you?
  • Today, many will decide to no longer sit back with a victim mentality, but to take charge of their lives and make positive changes. Why not you?
  • Today, many will take the action necessary to make a difference. Why not you?
  • Today, many will make the commitment to be a better mother, father, son, daughter, student, teacher, worker, boss, brother, sister, & so much more. Why not you?

Today is a new day!

Many will seize this day.
Many will live it to the fullest.
Why not you?”

― Steve Maraboli

Real life with multiple sclerosis

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As a kid people would ask me, “what do you want to be when you grow up?” My answer would change often, but I would mostly respond with Teacher, Scientist, Minister or Musician. Never once did I even think of saying I want to be a disabled person living with a chronic illness. That was never even a thought.

But now, after multiple sclerosis has come around, life is different. I’m no longer the invincible, untouchable kid I once was. I grew up and life became real.

You may see pictures of me smiling, but the truth is my nights are also spent crying. That’s right, MS isn’t the smiling face you see in those brochures or the victorious athlete crossing the finish line in those advertisements. It’s everyday people like you and me facing weakness, cognitive difficulties, bladder problems, tremors and numb body parts.

  • I want the truth about MS to be seen by the world.
  • I want to hear about people with MS that are facing hell, yet making it.
  • I want to see the daily struggle MSers experience.
  • I want to know about the problems, the large and the small.
  • I want to meet the courageous, the brave, the unstoppable, the true warriors.
  • I want to hear how lives are being lived in spite of a horrible disease.
  • I want the world to know about the sleepless nights MSers face.
  • I want to hear about the embarrassing moments that are endured.
  • I want to know of the emotional chaos MSers go through every single day.

That’s real life with MS.

The world doesn’t need any more brochures covered in rainbows and smiles. Sure, we smile and enjoy life in spite of our disease, but there is a lot hidden behind our smiles that the world needs to know about.

To the advertisers, the drug companies, and the TV producers: Don’t cover up our struggle. We’ve been through too much, come through hell too many times, to have our battle scars hidden away just to make a few people more comfortable with the effects of MS. We aren’t comfortable so they shouldn’t be either.

To the doctors and nurses: remember that MS isn’t easy. That the things you say, the way you help, the care you give really does matter. That just a simple “I’m here to help you any way I can” matters. That listening to our tear filled emotional breakdown really does help. That even though you may feel helpless in coming up with a solution to ease our pain in the short time you see us, we face those same fears and feelings every moment of every day. Please be patient with us, your patients. Sometimes you are the only ones we talk to about what we are going through.

In a perfect world, MS wouldn’t exist. There would be no pain, fears, difficulties or struggles. But we live in a world filled with brokenness. It’s okay to cry, fall apart and actually feel afraid. That’s part of being human. That’s a part of living.

You are a warrior that may be weary in the fight, but even on your worst days you are still fighting. Never doubt, even for a minute, that you are special. You are amazingly special and incredibly important. Hold your head high today. You got this!

Dare to Be
When a new day begins, dare to smile gratefully.
When there is darkness, dare to be the first to shine a light.
When there is injustice, dare to be the first to condemn it.
When something seems difficult, dare to do it anyway.
When life seems to beat you down, dare to fight back.
When there seems to be no hope, dare to find some.
When you’re feeling tired, dare to keep going.
When times are tough, dare to be tougher.
When love hurts you, dare to love again.
When someone is hurting, dare to help them heal.
When another is lost, dare to help them find the way.
When a friend falls, dare to be the first to extend a hand.
When you cross paths with another, dare to make them smile.
When you feel great, dare to help someone else feel great too.
When the day has ended, dare to feel as you’ve done your best.
Dare to be the best you can –
At all times, Dare to be!
― Steve Maraboli

Be a butterfly soaring in the wind

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Do you ever feel weird? Like you are not normal…if there is such a thing? I know I sure do. I tend to think differently than most people. I find humor in just about everything. If you hung out with me, you would find me laughing at dropping my plate full of food on my lap, joking about falling over while sitting to put on my socks, and giggling because I lost my keys for the hundred-millionth time.

At one time I lived life like a caterpillar. The only thing I could see day in and day out was the leaf I was sitting on. My world was small and limited due to multiple sclerosis and I couldn’t see very far. My life was surrounded by troubles that I couldn’t fix and neither could the doctors. I felt helpless and hopeless. Getting around in a powerchair had limited me more than I imagined it would.

But then a transformation happened. It took time and lots of work to shift my focus from my own struggles, but I grew the most amazing and beautiful wings. They changed my life. They lifted me up above my own troubles and helped as I spread my newly found wings as I flew above my circumstances.

I found the world to be much bigger than I had ever imagined. I saw not just my diagnosis with MS, but thousands upon thousands of others just like me getting through the struggle. There were trees and flowers and oceans and mountains. My disability was no longer my focus. There was an entire world to explore and there were people to help.

The other caterpillars on the leaf I started out on didn’t like that I changed. They wanted me to stay a caterpillar but once you find your wings, you can’t go back. I discovered that I liked being weird. I liked the beautiful butterfly I had become. I liked bringing sunshine and smiles to others around the world.

Much like the caterpillar, many times we get stuck in our troubles and struggles and only see life from a small place. We perch on our leaf and see only our pain, frustrations, difficulties and troubles. We convince ourselves that we are comfortable where we are not realizing that there’s so much more to living.

It’s time to become the beautiful butterfly that you are; to spread your wings and fly into the wind; to see life from a place above multiple sclerosis, financial difficulties, relationship problems, pain, and stress on the job. I’m not saying to pretend those things don’t exist, just let your focus shift to find the good around you, even in a chronic disease.

Can you think of one good thing that has happened in your life because of MS? I know you would have no problem coming up with pages of bad, but name something good. For me I would have to say simplifying my life by weeding out the work and people that I didn’t need around me became a good thing. The process was tough, but in the end I found I am much happier because of it. Also, I gained new friendships with people that I never would have met before.

I’m able to spend more time developing my artistic skills through painting and writing even when tremors and fatigue get in the way, and I no longer have to wake up before the sun to the buzzing of an alarm clock. Because of MS I don’t have a need to wake up with an alarm clock since I’m already up before the sun. My alarms are now needed for reminders to not forget something, not morning wakeup calls.

Be thankful for the good. As you do, you will begin to see more and more good around you, and before you know it you are no longer seeing life from the perspective of a tiny leaf, but from the wings of a butterfly soaring in the wind. Be that butterfly!

You can’t control multiple sclerosis

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Living with multiple sclerosis isn’t as easy as some people make it seem. It’s not like I can will my body into behaving or talk my muscles into working. Mine seem to have revolted all on their own. I don’t need anyone to pull me down with their words. MS is doing a pretty good job of that on its own.

I have days when I find myself dealing with physical symptoms like tremors, pain, weakness, numbness, vision problems, and muscle spasms. Enough to cause me difficulties but not enough to stop me from continuing on in my day. Then there are times when everything becomes so intense, when the pain and weakness grows so deep, that it bleeds over into every part of my life as it tries to get its grubby little hands on things like my thoughts and emotions.

One thing I have learned over time is that MS is not a disease you can control or keep to yourself. We try though…don’t we?! I know I do. I try to keep the effects of MS neatly contained in its own little space hoping to shield myself and those around me from its impending destruction, but it seems the more I try to contain it, the more it spills out. It’s kind of like trying to rake the leaves in my yard into a pile on a windy day. What a futile task. No matter how hard I try, they just won’t stay where I put them.

Regardless of what anyone thinks, we need people, especially when living with a chronic illness and even more so at this time of year. It’s a time when the weather is unforgiving. It has this sneaky way of causing our nerves and muscles to go a bit haywire as the hot temperatures creep into our lives limiting what we can accomplish on our own. Humidity is the worst.

As the summer progresses more and more cookouts take place. It’s amazing the things we have to consider when receiving an invitation to an outing. Is the location accessible? Will there be adequate air conditioning to keep me cool? Will my body play nice? Will I be able to manage the traffic? Will my finances be stretched too thin, above and beyond any past due medical bills? Will people understand my decision to stay at home or that I had to cancel plans last minute? Will they even invite me in the first place?

Real friends get it though. I was once told, “You can count your true friends on one hand and sometimes on one finger.” How true is that?

I know it’s not always easy to do, but be determined to fill the days ahead with the love of a few close friends. It really does brighten the dreaded summer days. If you can’t get out, invite someone over for a special movie night complete with pizza and popcorn or even have a Zoom meeting with people you haven’t seen in a while. Sometimes something as simple as a text message back and forth with someone you haven’t heard from in a long time can give you a smile that lasts for days.

From one friend to another: do your best to find joy in the steamy hot days and always remember just how absolutely, positively, incredibly amazing you are. I sure happen to think so.

I was born a fighter

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I will never give up,
throw in the towel,
back down, quit or
wave the white flag of defeat.

I may not wear a cape,
have my initials emblazoned across my chest
or leap tall buildings in a single bound
but I do wear pajamas even on my good days
and fall faster than the speed of light.
Don’t judge, that’s just the tools I have to work with.

I’m a doctor without a diploma,
a professional freestyle tumbler and
a faux Oscar winning actor. Sh, don’t tell!

I forget appointments,
burn dinner,
avoid saunas,
laugh and cry unexpectedly,
create messes,
trip on air,
choke every time I swallow and
stumble over nothing at all.

I’m a hard working,
word searching,
body fighting,
bruise finding,
re-run watching,
wall holding,
floor catching,
numb walking,
stair falling,
ice vest wearing,
body slamming,
pillow hugging,
nap taking,
slow moving,
mountain climbing,
multiple sclerosis warrior.

Yes, that’s me.

The choice is yours

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When I got up this morning I saw that I had put the clothes out that I wanted to wear. I stopped for a moment and thought, why did I do that? Then I remembered I have an appointment today to get the oil changed in my van. You wouldn’t believe how many times I’ve missed appointments by not setting my clothes out. But even in doing that, it’s still possible I may miss the appointment. Such is the vicious cycle of my brain trying to be normal in a chaotic world of screwed up nerves.

I have to go to the car dealer to get my oil changed because most establishments get a bit nervous knowing that there is no drivers seat for them to sit on to pull the van in to the shop so they can do the work. I know the dealer just places a bucket or a folding chair down to sit on so they can drive. They have no problems doing that. Maybe the others think the workers may get into a wreck driving the few yards needed to do the work.

My van is set up to use hand controls for a powerchair (wheelchair) driver. All the pedals still work for a normal driver if I place the real seat back in, but then I couldn’t drive myself to the appointment which makes no sense to me. I’m trying to be independent. That would be the opposite. I know I will have to pay more for the work but that’s better than not getting it done at all.

I have noticed that at times I have to compromise my choices in order to remain independent and that’s not always bad. Sometimes different choices are worth selecting. Sometime they make life better. Sometimes they are difficult to navigate. Sometimes they are worth the wait.

When was the last time you struggled with a choice? Maybe it was this morning, when you decided to hit the snooze button—again. Perhaps it was when you left your closet in a shambles after trying on seven different outfits before an outing. Maybe it was at the doctor’s office looking over different multiple sclerosis treatment options. Or maybe it was last night when you contemplated your employment choices or lack thereof.

Often, making a decision—even a seemingly simple one—can be difficult. We are all different and live unique lives, so there isn’t a “one size fits all” approach to independence. Weigh the options, look over the possibilities, and choose. Make each choice with courage, confidence, and determination to take on the journey, regardless of how difficult it might be.

Living with MS you have to make a choice: Fight or Give Up?

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In this crazy mixed-up world I can’t stop thinking about all that has to be done just to hold our heads up. Between health issues, worldwide troubles, unpredictable wars, economic downward spirals… where can you turn to remove yourself from all the chaos and really do you want to?

I think of my father in these times. He grew up a farmer but was drafted into the army at a young age causing him to have to leave behind the farm life. He didn’t have much of a career choice at that point. He worked hard and transformed into a great soldier.

He took what life gave him and became the best he could be with the hand he was dealt. I am convinced that if he had the opportunity to go to school he could have become a doctor, a scientist, an artist, or even a carpenter. He was all of those things to me. His life ended early, but his legacy remains.

He taught me what it means to be strong and courageous. I saw first hand the life of a soldier: the struggles, heartaches, pain and fears. Yet through it all, he never complained that life wasn’t fair (even though it was) or looked at something as an impossibility. He lived a full life to the end and gave it all he had.

Because of my father, I am who I am today. He instilled the determination, courage and resilience of a soldier in me, only I’m in a different battle and fighting a different fight. The tactics are still the same though. I have chosen to take what life has handed me and to become the best that I can be.

You are in a battle too. Yes, there will be struggles and pain. There will be times you may be fearful of tomorrow or even of the next step you need to take, but you are soldiers, and soldiers march on. You don’t lower your weapons or lay down in defeat. You push to the end and give it all you’ve got.

Each morning when you wake up and open your eyes, before you even pull back the covers, you have to make a choice. Fight or Give Up? Which will you choose? Are you going to let the fact that you have to crawl through the trenches just to get your day started cause you to wave the white flag of defeat? Are you going to let the opinions of others and their negativity keep you from advancing?

My answer is no, I will not. Join me.

We are fighters, not quitters. We are soldiers in this battle with MS. We are thousands strong standing shoulder to shoulder and linked arm in arm. Together we fight.

When one of us is wounded, we come together to hold that one up. No one is left behind. We are powerful! We are brave! We are unstoppable! We won’t back down and we will never give up.

“Impossible” is not a word in our vocabulary. We prove that to be true every day. Get rid of the complaining, walk away from negative people… they will only weigh you down and hold you back. Remember, you are not alone in this fight. Now, let’s get out there and kick some MS butt. Oorah!

You are a survivor

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Unlike many people, we’ve endured the diagnosis of multiple sclerosis. It’s a story some of you know very well. For me it was a quick process due to my MRI results and my prevalent loss of multiple bodily functions. But I know for others it was a long and arduous development with one appointment after another, yet nothing being found definitively sometimes for years.

Oh, the heartache. Oh, the worries. Oh, the concern of what is actually happening and when will it end. When the diagnosis takes place there is a moment of relief knowing that you aren’t going crazy. That there’s an answer to all your troubles.

Through it all, I have to say… you are a survivor. It took me a little bit of time to figure that out for myself. I was caught in such an out-of-control whirlwind that I couldn’t see anything around me that made sense anymore. But then I saw it. Hidden behind the appointments and around the newly discovered symptoms, there it was plain as day. I am a survivor. I’m not healed and as of today am not healed. But I have survived and each day I am surviving.

But why? That was the question I kept asking myself. Why have I survived? Why is this my life now?

I don’t know why I have lived through it. I don’t know how I have lived through it. But what I do know is that I have emerged stronger and with a clearer purpose. Whether you believe it’s God’s gift or just sheer luck… you have been given a second chance in life and I encourage you not to squander it or dwell on why you were chosen.

We make choices every day. Some are clear to make and some not so clear. But I believe we have been chosen to rebuild this MS community we find ourselves a part of as we rebuild ourselves. Some of us will rise to the challenge, other’s won’t. But we will all ultimately survive because we already have.

Let’s be honest. You’re a survivor.

I like how Lori Goodwin said it… “Even in times of trauma, we try to maintain a sense of normality until we no longer can. That, my friends, is called surviving. Not healing. We never become whole again … we are survivors. If you are here today… you are a survivor. But those of us who have made it thru hell and are still standing? We bare a different name: warriors.”

So fight on… my MS Warriors. Fight on!

With multiple sclerosis you can’t control your body

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When I was diagnosed with multiple sclerosis, I saw all the good happening in my life disappear as if a sinkhole opened up around me. Many of the things that I had planned was just washed away. As the days passed I saw my lifelong career finished, friendships lost, finances depleted, and any motivation I had to try and further my life began fading away.

It was replaced with an overwhelming amount of depression along with hopelessness, dread, and fear as my body stopped functioning due to loss of mobility, body tremors, numbness, urinary incontinence, pain, brain fog, relentless fatigue, vision difficulties, and speech problems. Whew, that’s more than I ever expected and it happens to change moment by moment. No day or hour is the same and new problems kept arising.

I didn’t see anything good happening in my life. As the days went by and my progression worsened, I was convinced my life was over.  Forget about that long list of problems and issues I now face, if you’re like me, if you don’t forget the symptoms you are experiencing you will forget how to pronounce them or what word to actually use to describe them.

But I have to say that regardless of MS, I found I can accomplish anything I set I mind to. I end up laughing at myself for my crazy brain fog moments and try my best to take each moment to pause and breathe.

I found that with hard work and determination I can do anything. I may do it differently than in the past but who cares what I look like or how it’s done. I sure don’t. MS has rid me of having to appear put together. I drool, fall down, drop things, and forget anything someone tells me, but all I can say is oh well and just keep going.

Like, I can deal with my blurred vision if I look through just my right eye and don’t try too hard to focus when in motion. That wouldn’t end well. Between blurred vision and loss of color clarity in one eye, every day is an adventure.

I can walk with parallel bars if I hold onto them even it’s only for 5 steps, but hey, it’s 5 steps… yeah! If only my world was surrounded by them and followed me with a chair to sit in every few steps I take, I would be able to go anywhere on foot. But I’m proud of my ability to function in my powerchair called an iLevel which gives me the ability to reach things that would normally be out of my reach affording me the opportunity to set up my kitchen and bathroom to use the upper cabinets without the hinderances I had before.

The numbness in my body has become something that doesn’t subside. Although it’s there constantly, it’s something I have be aware of due to possible injuries I may get with sharp objects and extreme temperatures. I have had my fair share of burning myself without realizing I’m touching something hot, so I deal with if mostly by not giving in to the frustrations that happen when I get a bit absent minded. I have had broken bones, burnt hands and deeply cut fingers all because of it, but they are my battle scars and I wear them proudly.

Now the tremors are one problem that is a bit more difficult to deal with. I had an issue just last night when I was heating up a bowl of noodles and in the process of placing the bowl on my lap, my right hand had a crazy spastic moment accompanied by tremors and the bowl went up and fell spilling everything on the floor as well as on me. Of course when those kinds of things happen I dread the clean up, but while cleaning up I just laugh at myself thinking, I knew that would happen… which of course I didn’t, but it has just become more possible than random and I again end up in laughter mixed with tears thinking “it could be worse”. Then I made a peanut butter sandwich.

When you are filled with anger and start questioning your existence. Wondering why MS happened in your life? Why you’re facing the challenges MS brings? I can tell you that you’re not a bad person. God doesn’t hate you. You are going to be okay. Really… you are.

With MS and all that it brings, you can live life to the fullest. Don’t dwell on the past. You can’t change anything that has happened to you and wishing that things were different doesn’t help anything. As you have probably noticed, with MS you can’t control anything including your body and what it will do next, but the lack of control forces you to look at what you do have and truly count your blessings.

The best thing of all, you can control your attitude. Having a positive attitude in a negative situation will strengthen you and give you the needed determination to go further than you thought. And do it with  gratitude. You can accomplish anything. I believe in you as we go forward (sideways) together.