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Multiple sclerosis tried to break me

Have you ever gone to the beach and taken time to truly examine the seashells that wash onto the beach? Some people are avid shell hunters and spend countless hours searching for the perfect ones. They are looking for beautiful coloration and formation. They don’t even contemplate collecting the broken ones, after all who wants a broken shell sitting on their coffee table?

But then you have people like me who enjoy going to the beach and stumbling across incredible little treasures along the shore. I pick up each shell that stands out to me as the waters ebb and flow over the sand. Some of the shells at first glance look like a perfect creation, yet once I bend down to pick them up, I find them to be a broken treasure instead. Those are my favorite kind and the ones I place in my pocket to take home.

I have a bowl full of broken shells that I have proudly displayed for anyone who comes over to see. Some of those shells are beautiful pieces that could be made into an exquisite piece of jewelry, but most of them are fragile and broken from years of life in rough waters. Some have lost their vibrant color, others have lost their outward beauty, and still others have allowed deposits from the ocean environment to leave a lasting mark on their surface. Each one is broken and yet each one is amazingly beautiful.

Just like those shells, some say that I’m broken. They look at me – at my past mistakes, burdens, heartaches, and even at the fact that I’m living with multiple sclerosis – and all they see are my cracks, scars and the shattered fragments of my life. But the most amazing thing happens when you hold me up to the light. Not only will you see my imperfections, but you will also see what makes me beautiful.

I admit that sometimes it takes everything I’ve got to simply get out of bed in the morning. Many times I don’t want to get up. I wake up before dawn and all the “stuff” I have to do, along with what I haven’t done and the problems that await me, comes crashing down and all I want to do is stay in bed and hide under the covers.

I take a deep breath and gather the strength I need and roll out of bed, sometimes even crawl, to start my day. It’s because of being broken that I am who I am…a battle weary warrior who has overcome much with unimaginable strength, determination and a refusal to give up.

You have cracks, scars and broken areas of your life too. The ups and downs you have experienced are real. Just because you are imperfect and living with a chronic disease doesn’t mean you are worthless. Each one of those things makes you uniquely you. You are not broken…you are a beautiful example of how someone can push through all the junk life throws their way and rise above it shinning brightly. You are not broken…you are beautifully YOU… scars, imperfections, wounds, bruises, cracks, and all.

I lost my brain

Today I was jolted awake with the thought, “Oh, no…what day is it?” It was a sudden thought. One that I didn’t have time to fully process. My brain just couldn’t seem to work things out on its own. It was as if someone had poured sticky, gooey, hot molasses all over it. At least molasses would have been a valid excuse for the sluggishness I’m experiencing. Having an MS brain isn’t as easily explained.

On days like today when my brain just doesn’t seem to be able to process one single thought properly, I find myself working extra hard to make up for it. I pause while I’m talking to help as I’m searching for the right words to say, I take notes to help keep me on track, I even defer to others so they can finish what I’m trying to say. It’s amazing how extremely exhausting all that is. Thinking to think is hard work.

This morning, I can’t even do that much. This morning is an “I lost my brain” kind of morning.

I can only imagine the person who accidentally stumbles across this weird looking blob called my brain lying somewhere between the mailbox and the bathroom. It’s this strange looking creature full of scars and holes. None of which helps me out. They actually hinder everything I do.

Will they even know what they have found? I hope my brain returns soon because as of right now…all I can do is simply roll over and go back to bed.

I think my brain ran away because it was having to work too many hours and decided it needed a vacation. I wish it would have let me in on its plan though because I would have loved a vacation right about now. Anyone up for a trip to the caribbean?

Real life with multiple sclerosis

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 strong

One of the great American authors, Alex Haley, had a picture on a wall in his office that attracted much attention. It always aroused the interest of his visitors because no one could understand the significance of the photograph to the writer.

On one occasion, a visitor with a perplexed look on his face asked, “Alex, why do you have a picture of a turtle sitting on the top of a fence post?” Haley replied, “I try to remember how this turtle – me – got on the top of that post.”

Sometimes, perhaps most of the time for many of us, it is difficult to admit that if it weren’t for the help of others, we would not be where we are. From our earliest moments until this present hour, we are encouraged by nearly everyone to believe that “You can do it by yourself!”

But this is not true! We all need the help of others. Each day people come into our lives who need help, encouragement, inspiration, an act of kindness, words of sympathy, or a look of empathy. Receiving and giving help are basic human needs and behaviors.

But when you are living with a chronic illness like multiple sclerosis, asking for help isn’t always that easy. It seems like it should be, but reaching out can be tough. Many times you end up feeling vulnerable, weak and exposed for reaching out. And sharing your needs means the reality of how bad your illness has gotten scares you. You would rather others not know in order to keep them from worrying.

This can create a vicious cycle, leading to anger, frustration, and feelings of helplessness or hopelessness. Things cannot get better if you don’t acknowledge what is wrong. If you find yourself overwhelmed you may benefit from talking with your doctor about what’s going on. They have access to great resources that can help.

I have news for you today… reaching out to others for help is one of the strongest things you can do. It means that you are standing up to unspeakable forces and looking MS in the eye proving you aren’t afraid of what is happening. Only the strong can do that. And you are strong.

No matter how weak you feel, no matter how beaten or how bruised you are, I promise you, you are more powerful than you can possibly imagine. You’re living with the impossible every day.

And like the turtle on the fence post… you have many people willing to help if you just reach out to skilled people who have the resources to put things into action for you. Are you on the fence post to learn to fly or to learn to repel down?

“Be strong.”

Ready for surgery

My bags are packed for a 6 day hospital stay. Not my choice of a resort stay but at least I will be taken care of while recovering from surgery on Monday morning. I have to be at the hospital at 8:00 AM, Feb 6th. Surgery will take about 2 1/2 hours. I will write to keep you updated while in the hospital. Don’t know what day I will post something but hopefully you will hear from my by the 7th.

I have to empty my bowels on Sunday starting at 2 PM. I have to down 4 litters of Gavilyte-G. Lemon flavored… and stay by the toilet so I won’t make a mess rushing to the bathroom. Ugh!

For those who don’t know my urologist has recommended the removal of my bladder and a stoma made with a part of my small intestines to empty my urine into a pouch on the outside of my stomach area. I won’t have any more stones to deal with. No more UTI’s. No catheters to change. Just a urine bag/pouch to change. It’s supposedly not be painful once healed. My urine will just be an open flow outside of my body. Kidneys will work the same. Just no bladder.

I’m a little nervous about it and hope I will heal quickly and learn quickly how to manage dealing with a urostomy bag. I’ve met with the nursing staff that will be teaching my after surgery how to manage everything. They are really nice and have already given me some products to play around with to get a little familiar with what I will be doing.

Keep me in your prayers. I will be doing the same for you. Hugs…