Don’t lose heart

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Multiple sclerosis has taken so much from me. Some things I don’t miss, but it is heartbreaking to discover that my ability to play the guitar is now one of them.

I decided this week that I was going to get my guitar out to try and get my music going again. I was a really good guitarist playing for weddings and even played in a few concerts singing before thousands of people. I have missed it and was hoping I could get it going again.

I was trained classically by the Dean of Music at a university near where I lived in Missouri. He gave me private lessons and I had even impressed him with my skills. My voice is no longer strong enough to carry a proper tune but I thought I could at least get a few notes out that made some sense on the guitar.

I was at least able to remember how to manually tune the strings. I got my pitch pipe out so I could get the fifth string of the guitar in tune and then made all the other strings properly match up. I had always used a method called harmonics to help me get the strings tuned. I never had an electronic tuner like many musicians use.

Once I got the guitar properly tuned I thought at least I could make something of my efforts. But I sat on the couch a bit dumbfounded trying to remember the first strokes to my favorite song. I couldn’t get my right hand working at all. No picking and grinnin’ was going on. All I could do was a simple strum and to me that’s not as pretty as being able to use my fingers to create a beautiful melody.

My left hand was able to make the chords but I couldn’t do much of anything with my right hand in order to strum. I sat in tears mourning my lack of ability to play. I had hoped I could get something out… but nothing made sense anymore. It was heartbreaking.

I pulled out some of my sheet music and sadly couldn’t make sense of it any more. That was a really sad hard hitting reality for me. I never thought I would lose my ability to create music. All I can do now is just listen to the beauty others create. At least I will never lose the music in my heart. It’s still there. Maybe a whisper, but it’s still there.

When things don’t go as you had hoped you can’t give up. I promise you things will get better, one way or another they will get better. You can take my word for it. No matter what trial you are going through you can’t lose heart. Tomorrow is a new day, don’t forget that. You are not alone. I will walk with you through this valley and together we will make it through. Don’t lose heart.

Finding strength in tough times

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Sometimes life comes along and dumps a big ole stinkin’ pile of poop right on top of your head. It doesn’t ring the doorbell or schedule an appointment either. No, it comes around unannounced and without warning. I would love the opportunity to throw it back or pile it up at its front door…on fire, but somehow I can’t seem to find a shovel or a wheelbarrow when I need one.

But you know, I have learned to appreciate those piles of stench when they come. Sounds crazy, I know, but some of the most amazing flowers I have ever seen have grown out of the most terrible of circumstances. I saw a beautiful, radiant flower growing in the middle of a smelly old compost pile once. There’s something powerful and amazing about a flower growing in the midst of tragedy. Imagine all it had to go through just to bloom, to grow. It had to push through a whole lot of crap, suffer more than most, yet somehow found the strength to rise up and bloom where it was planted…in the middle of a mess.

I’m sure it felt suffocated, unappreciated, unlovable, unimportant, and even out of place, especially seeing all the other flowers enjoying the comforts of the flower bed. Yet there it was stuck in a pile of poop. That would make any flower contemplate giving up.

Over the years, I have noticed that life is full of piles of poop. As we walk this journey, sometimes we are going to step in some pretty big smelly piles of it too. Sometimes life is going to keep piling it up. Pile after pile, mess after mess, struggle after struggle. When that happens, our first reaction tends to include throwing our hands up with serious thoughts of quitting.

Maybe you’ve been pooped on by life and you’ve simply had more than you think you can handle. Maybe MS has been bothering you more lately than in times past. Maybe you don’t have anything left in you to hang on to and getting things done for yourself seems like  an impossibility.

Know that today you can choose to take a step towards making a difference in your own life! Get out of the house, listen to your favorite happy song, remind yourself of what you love and what makes you happy! You don’t want to miss the good that is around you by sitting in a stinkin’ pile of poop.

Even with all the difficulties and disappointments, I know you’re not a quitter. You are like that amazing, beautiful flower growing in the middle of a mess. That’s pretty incredible if you ask me. You may not be able to change your circumstances, but you can change your perspective and find beauty in the mess. It’s time to push through all the mess surrounding you, hold your head high and bloom where you are planted.

My never-ending multiple sclerosis struggle

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I’m not going to lie and tell you that life is wonderful at the moment or pretend to have all the answers. The truth is, life is hard and for those of us living with a chronic illness it seems harder than it does for others because our struggle is never-ending and always changing.

Each morning I wake up exhausted but thankful that a new day is here filled with its countless possibilities. Throughout the day I face challenges that at times can become overwhelming, painful, and sometimes more difficult than I had ever imagined. Multiple sclerosis challenges can cause a lot of trouble and bring about a battle that I don’t always have the strength to fight. But somehow I gather enough strength to come up swinging. I refuse to let the struggle win.

Just yesterday I fell yet again transferring to my powerchair. You’d think I would have found a way to avoid it but I never do. I tend to go from point A to point L, M, N, O, P before I find point B. But even in my roundabout way, I get there. With my new bruises, wounded pride and 2 large cups of coffee I was able to get through the day. I made it… or so I thought.

It was right before bed that I discovered a leak in my urostomy pouching bag used for my makeshift bladder so I had to clean myself up and  put on a new pouch. Just doing that took the remaining strength I had left. My hands weren’t working well for me. Between tremors and weakness my hands were making the change difficult.

I barely had enough strength to climb into bed. When I finally got to bed for the night I paused to reflect on my day and without fail I realized that I made it through another day with MS. Maybe bruised and a bit wounded, but I made it through. As I closed my eyes I did so with gratitude and with a heart filled with thanks that I made it through another day.

After all that I remembered that a new day is coming. What will that new day hold? Will it be a good day, a terrible day, or will I even have enough strength to get through it? Will I cry? Will I laugh? I just don’t know. All I know is a new day is coming.

I know an MS life can be hard, but through the struggle I want you to remember this…

When things get bad, no matter how hard they become, know that even on your darkest, cloudiest day, the sun is still shining from behind the clouds. It hasn’t fallen out of the sky. It hasn’t run away or been turned off. It’s still there and although the storm clouds can become daunting and terrifying as they hide the sun from view, they will eventually shift and you will find those beautiful rays of light peeking out once again.

Don’t let your struggle steal your happiness. Stay strong and find new ways to persevere. Remember those moments when you pushed through the pain and managed to wade through the darkness? Those are your strongest days. You would have never experienced such strength if you hadn’t been pushed so hard to find a way to survive.

And that’s what you are…a survivor!

You are not alone in this journey with MS. Brighter days will come. I can guarantee you that.

Oh, look…I think I just saw a little bit of sunlight peeking through the clouds. It’s a new day filled with new possibilities. You are going to make it!

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

MS altered my life but it doesn’t define it

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I think all of us long for the day when multiple sclerosis no longer exists. When we wake up in the morning to find that not only is there a cure which has eradicated MS from the planet, but one that has reversed the damage already affecting hundreds of thousands of people worldwide.

I woke up this morning and sad to say, today wasn’t that day. So what do I do? Do I get angry because of the struggle? Do I allow depression to overtake me? Do I resent the fact that life is so very different than I ever planned for it to be? Or, do I choose to recognize that life will have problems no matter what I’m facing or where I’m at and that it’s necessary to find some good in the day if I am going to get through it. Can that even be done?

It’s not easy living with a chronic progressive illness as you already know. Days can be so unpredictable and the limitations we experience can become overwhelming and heartbreaking. No amount of ignoring it, hiding it, or pretending it isn’t there is going to make it all go away.

I can tell you that as a fact because I took a shower this morning but struggled to gather up enough strength just to dry myself off. At least I remembered to rinse all the shampoo out of my hair before getting out. But since I have gotten dressed I’ve been dragging just to get myself going. Why do I do that to myself? I know that showers are one of my enemies that I need to be cautious of because it increases the weakness throughout my body for at least an hour afterwards. Telling me to ignore my weakness or even to pretend it doesn’t exist at a time like that is preposterous. I need a nap not a judgement from a heartless uncaring individual.

The most important thing I could ever tell you in life is that you are much more than your weaknesses and strengths. You are so much more than MS. Don’t let it define you.

  1. Try to express gratitude for the simple things: a warm shower, buttered toast and the smell of rain. Practicing gratitude helps focus awareness on what is going well.
  2. Recognize anxiety triggers. An upcoming MRI scan or doctor’s appointment, even walking into a medical office may bring up feelings of dread. Sometimes just recognizing anxiety can help dissipate some of the nervous energy.
  3. If you don’t quite have your pre-MS stamina, find a new way to experience what you love. Do you enjoy gardening? Try floral arranging. If golfing brings you pleasure, don’t throw in towel if you can’t complete 18 holes; set up a putting green in the living room.
  4. Stay engaged in life activities. Don’t delay living life to the fullest and planning for more. Make vacation plans or enroll in a community art class.
  5. Get physical. If there is a universal remedy for any type of illness it’s “keep moving.” The body is made for movement; without it, muscles shrink and weakness sets in. Ask your healthcare provider for a referral to physical therapy to jump start your physical improvement program.
  6. Connect with others who are thriving in spite of an MS diagnosis. What are their coping strategies? Healthy support groups can be a place of refuge where your feelings can be validated by other people sharing a similar life experience.
  7. Have tough conversations. Talking about the future can be hard. Sometimes just getting the conversation going is a tough problem to overcome. But if you’re talking with your close circle of family and friends, that’s a great start.

There are times when we need to put on a brave face even when we don’t feel very brave. To recognize our worth, beyond our accomplishments and bank account balances. To look MS in the face and say “I’m not afraid of you and will not be defeated along my journey into the unknown with a chronic progressive illness.”

It’s important to embrace yourself as you are without the need for constant comparisons. Remember, it’s okay to take your guard down once in a while. Everyone needs a moment to be themselves, away from the judgements of the world and from those that don’t want to navigate around our limitations. A place to be authentic.

Authenticity is about being true to who you are. It’s about embracing your strengths, accepting your weaknesses, and living in alignment with your values. As Oscar Wilde famously said, “Be yourself; everyone else is already taken.” This quote sums up the essence of authenticity. It reminds me that our authenticity truly defines us.

As we navigate through life, let’s strive not only to understand the struggles that we face but also to appreciate the unique individual that we are. I challenge you to shift your thoughts to focus on what you do have rather than what you don’t. I think you’ll be surprised at the strength that rises up in you.