You are stronger than even the rarest diamond ever found

Are you really going to let life defeat you? You’ve done so much. You’ve fought so hard. You’ve cried so many tears. You’ve climbed so far. Are you really going to give up now?

You may think you can’t go on, but you are capable of so much more. I know you are…and I believe in you even when you can’t find the strength to believe in yourself.

Just because multiple sclerosis is a part of your life doesn’t mean your life is over. No matter how difficult today may be for you, you really do have the strength to get through it. And that strength, it’s found inside yourself. You just so happen to carry it with you everywhere you go.

Don’t waste the day feeling sorry for yourself. You are so much more than MS ever will be. MS just happens to be one part of your life, but it’s not who you are. You are more than the pain, more than the weakness, and so much more than the weariness, loneliness and disappointments. You get the amazing opportunity each day to define who you are. Don’t let MS have that job.

Step back and look at your life from way over there…as I point to the furthest corner of the universe. Look at all you’ve been through over the years. I know it can seem unfair and even hurt looking back at the hard times you’ve faced, but do you not see the strength you have gained in return for the struggles you’ve endured? You are amazingly strong. Stronger than even the rarest diamond ever found.

Diamonds are created through tremendous heat and massive pressure. There’s no other way for them to become so beautiful. You may not believe me, but you are a beautiful and amazingly rare diamond…and diamonds just so happen to be the strongest material in the world.

You have endured the heat and the pressure of some truly awful circumstances, and now here you are raw and uncut, beautiful and oh so precious. It’s your time to shine.

Dizzy…my head is spinning

I have always wanted to go on an ocean cruise to Alaska; to see the glaciers, whales and amazing skies. Someday that dream will happen, but until then at least I already know what the waves feel like since I experience those daily in my head. That’s the best way for me to describe to people the dizziness and vertigo I experience. Either that or sometimes I will tell people my head feels like it’s stuck in a shaken snow globe that’s waiting for the flakes to settle…only the flakes never do.

Most days it seems I am fighting a never-ending battle. There are times I wake up thinking all is good and that the spinning in my head is gone, but as soon as I get up and start going about my day…boom, it’s back. It never seems to go away for long. I think it just takes periodic bathroom breaks or trips to the refrigerator for a snack. I’ve tried to talk it into moving to Kalamazoo, but for now it seems to have no plans on leaving.

Living with vertigo, or any multiple sclerosis symptom for that matter, is not an easy thing to deal with day in and day out. It can cause you to feel like an outcast and all alone. For many, that’s the very reason they give up and withdraw from life.

The pressure of trying to explain yourself all the time can be tiring, especially when those explanations are met with blank stares or unsympathetic responses. No one wants to be told to suck it up every time they are having a difficult moment. No one wants to feel like they are losing it because the symptoms have become too overwhelming.

Know that you are not delirious. What you are experiencing is real, and although it can be difficult to make it through the day, or even to get through the next 5 minutes, you have to keep going. Many times for me it becomes a moment by moment, one breath at a time kind of thing.

Choose to love yourself enough to hang on. Remember, you made it through yesterday, you made it through some other really tough times…you will get through today too!

We are warriors fighting in a battle that many will never see

I looked up the word discourage in the dictionary this morning. I know that may sound silly, but I wanted to know exactly what it meant. My brain doesn’t let me remember things like that any more.

According to Webster’s Dictionary, discourage means to deprive of courage, hope, or confidence.

Wow…lately I guess you could say I have been deprived of courage, hope and confidence. Maybe you have too. It’s hard trudging through the day when I feel like I’m dragging the weight of all my emotions and troubles along the journey with me. Emotions can get messy and heavy. I don’t know about you, but I definitely don’t need any more messiness in my life let alone extra weight to add to my load.

So many times life just doesn’t make sense…MS doesn’t make sense. We try to fit everything that is happening around us into a neat little package and tie it up with a pretty little bow, but it just never seems to quite fit as we had hoped. Life begins spilling out around us and discouragement has this wonderful ability to sneak in to join the party.

When I get discouraged and start to feel as if I’m falling apart, I remind myself of why I have stuck it out this far in the first place. Yes, the road is hard. Yes, I’m dodging bullets at every turn. Yes, I have been hit and wounded by a few. Yes, I’m tired, worn out and weary, but I’m more than those things…and so are you.

We are warriors fighting in a battle that many will never see. Our battle is real, it’s personal, and it’s ongoing. But just because each day we wake up in the trenches, doesn’t mean we have to sit down and never move forward. You have to keep going even if all you can do is drag your body through the mud on your elbows.

Don’t let the struggle you are facing keep you from being the amazing person that you are. Fight with your head held high, full of courage, hope and confidence. Don’t let discouragement set up camp along the way.

Be encouraged by looking back at how far you have already come. Yes, there’s a long road ahead, but don’t look at how long it is. Focus just on today and the journey in front of you right now. You will conquer it one step at at time.

stare

When people stare

When I was in college I had a job delivering singing balloon-o-grams. I would dress up as a clown or a gorilla, drive to someone’s house with a bunch of balloons filling my car (yes, I was a driving gorilla), walk to the person’s front door and deliver not just the balloons but a song as well.

I would get some rather interesting responses from people. I’m tall, so if you can imagine a 6’1” gorilla standing inside the elevator when the doors open on your floor. I received screams as well as laughs. Most of the time I rode the elevator alone. People just didn’t seem to want to ride with me. I have no idea why (grin). I had fun being stared at and having people stop and point. I mean, it’s not every day that you see a gorilla walking down main street.

No matter how much I enjoyed that job, it didn’t prepare me for the stares I get today from people when I wheel myself out of my van in a wheelchair. I’m not sure exactly why people stare. I don’t know if they’re trying to rationalize my life story in their head once they realize I’m in a wheelchair, or if they have never seen someone with a disability before (which I highly doubt), or if they just can’t believe someone looking so good can really be disabled in the first place. Regardless, their stares are noticed.

I do my best to not let people’s responses get to me. Almost every time, I look them in the eye, no matter their reaction, and smile. It gives me the opportunity to ease the tensions and show them how strong I really am. I figure, if they’re going to stare I might as well give them something to stare at. One day I should fake a complete body spasm to really mess with them. (Shake, twitch, shake, grunt, moan…grin.)

I think people assume you should be hanging your head and having a pity party every day when you are disabled. But I can’t live that way, and neither should you. Multiple Sclerosis is a part of our lives. It’s chronic. It’s real. It’s a daily reminder that life can be unfair and really, really difficult, but it’s also something to be treasured, lived, and not taken for granted…so make the best of it.

You can do this. Hold your head up and smile today regardless of people’s reactions to seeing you walking a little funny or slurring your words. Don’t let other people’s insensitivities determine your mood. A welcoming smile from you can change their snap judgments and help open their eyes to seeing the real you rather than the disability. It doesn’t always work, but 9 times out of 10 it does, so why not give it a try.

My dream is to one day walk down the street and be greeted as me rather than my disability. To be approached with a hello and a handshake rather than head turns and stares. For those with questions about my disability to actually ask them rather than assuming and then whispering to their friends. For people to realize that I’m really not the one with the disability….people with a lack of empathy, understanding and love, those are the real disabled in the world.

Real friends

Living with Multiple Sclerosis will weed people out of your life

One thing multiple sclerosis has done for me is weed out the people in my life that were only there for the ride, not the journey. So many times people proudly boast about the great numbers of people they know, but are those people really friends? I can almost guarantee you that a majority of them are what I would consider fair-weather friends.

I’ve noticed that people seem to be great at hanging around when they are getting some type of reward or kick-back for being your friend. You know, the free food, tickets, perks, support that you are able to send their way, but when those things dry up and you become the one in need of their continued help, they suddenly have other things more important to do.

Life has taught me a few things—I guess you could say the hard way—about people. I have learned what true friendship is…and is not.

A friend is not…

  • the long list of people in your High School year book.
  • the person who friended you on Facebook, followed you on Twitter or added you on Instagram.
  • someone who attended your birthday party or says hello to you in passing at the office.
  • the person who gives you a piece of gum or hangs out with you at the mall.
  • someone who waves at you from across the room, bags your groceries or invites you to their wedding.

A friend is…

  • someone who is willing to go grocery shopping with you on the coldest, rainiest day of the year and allows you to change your mind ten times about which kind of cheese you want for sandwiches.
  • someone who puts up with your moodiness, hangs in there through the tears and listens when there’s nothing left to say.
  • someone you can call up at 3 o’clock in the morning to take you to the emergency room or help you with a flat tire on the side of the road.
  • someone who holds your hand when you get a bad doctor’s report and who never judges you when you have a melt down.
  • someone who genuinely wants to know how you’re doing.
  • someone who never walks away.

A friend isn’t the person who SAYS they are your friend, who SAYS they want to help, who SAYS they will be there come rain or shine…they PROVE it by the things that they do.

I hate to admit it, but I know I have become less of a friend in return for many of the people in my life mainly because MS has exhausted me both emotionally and physically to a point where I don’t have the energy to maintain forced interactions or unnecessary conversations.

An exhaustion so deep that I don’t have the strength to hold someone else up without sinking myself. I’m at a place in my life where I am the one in need of support. A true friend will understand that and choose to stay anyway.

Hang on to those true-blue friends. You won’t have many…maybe one or two, but they are worth their weight in gold.

Living with multiple sclerosis will weed people out of your life, but in the end you will be left with the beautiful roses, orchids and daisies. Treasure the people that treasure you.

When we honestly ask ourselves which person in our lives mean the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand. The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing, not curing, not healing and face with us the reality of our powerlessness, that is a friend who cares. ― Henri J.M. Nouwen

Sometimes multiple sclerosis wins, but not today

What a tough week so far. I just woke up for the day and here it is 9 AM. That is just so not like me. Normally I will not sleep well through the night and yet still be awake by 6 AM. I tossed and turned though the night listening to a thunder storm (which actually for me is quiet soothing). I’m glad the last few hours that I spent in the bed this morning were actually spent sleeping…I think.

I have felt so much weaker these past few weeks. My body won’t cooperate and my brain seems to have gone on vacation. I don’t like feeling out of control like that.

That’s one thing multiple sclerosis does…it takes away your ability to control much of your life, but at least the things I can control, I’ve got. I can still laugh, smile, find enjoyment in life, cry, worry and wonder about tomorrow.

I often think about where life is heading for me and it does concern me if I allow myself to stay in that place for a long enough time. You can’t do that. Yes, acknowledge the reality you are facing. Yes, allow yourself to go through times of worries, fears and doubts. Yes, give yourself time to grieve if you need it…

But then you HAVE TO shake off the weighty negative thinking and face the day you have TODAY. You only get one today so make it count.

It may be a tough day to handle…but you are tougher than any of the things happening around you. You didn’t ask for this life. You didn’t ask for the struggles, the pain, the storms. You didn’t ask for MS, but since it’s here choose to keep pushing through all the crap that comes with it and find something good to hold on to. There is good in today. You can’t give up on being able to find it. You can’t let MS win.

Keep searching. Keep going. Keep pushing through. I believe in you!

Dear Weary One…

Dear Weary One,

I know your heart is heavy. Right now you are on the verge of tears…tears that have been collecting deep in the spaces of your heart and flooding over into your mind. You have met reality face to face and you don’t like it one bit. Multiple Sclerosis is your reality. It’s real and you feel it deep.

Many times you find yourself overwhelmed and challenged in areas of your life that you never thought challenging before. You feel the weight of simply making it through today to be daunting as laundry piles up and errands are put on hold. You don’t feel very brave right now.

Sure, when you go out the door to greet the day with a smile plastered across your face, people see you as strong and resilient, but that’s a mask you wear out in public to cover the pain. They don’t realize the weight you carry.

In the quiet when you are able to get away from the crowds and business of life, that’s when the mask comes off. That’s when your thoughts run wild and the tears begin to fall. That’s when you find yourself wondering where your brave is…when you feel numb to the core and every emotion imaginable comes crashing in?

You find yourself asking where’s your brave when all you see is clouds around you? Where’s your brave when you tear up because you can’t find the strength to hold onto a pencil to write your name? Where’s your brave when you try to walk across the room but can’t seem to get your feet to cooperate and end up having to sit down? Where’s your brave when your words get all jumbled up trying to have a normal conversation? Where’s your brave then?

I want you to know that you are brave even when you don’t feel like it. There truly is strength in you. A strength so amazing that even you can’t see it…but others can. You’ve held on this long, you’ve made it this far, you’ve kept going when others would have long ago crumbled…that’s brave, that’s strong. You don’t see it, but I sure do. You are a brave warrior in this fight.

Rise up and be confident in who you are. Don’t give up just because the road is hard. It takes a strong person to wake up in the morning and face a new day surrounded by challenges, and you are doing it.

Discouragement will happen, exhaustion and stress will find you, but don’t allow your heart to grow weary too. It’s okay to let the tears flow. Sometimes that’s what you need to do to lighten the load. Let the tears flow then let it go and find your brave today, because you are brave!

Signed,
A friend standing with you in the fight

 

Today, we fight…

How can anyone live with a chronic illness and still smile? How is it that I am able to find happiness after a disease has stolen away a flourishing career, ended friendships, isolated me from much of the world, and many times confined me to my house?  How is it that I am not falling apart along with the rest of my world?

I must be living in denial or in some sort of fantasy world that I’ve made up in my own head. No one can have progressive Multiple Sclerosis and still find purpose in life. No one can have their life striped away; have moments, if not days, of tears; live in continual, relentless pain, fatigue and weakness yet find themselves not cursing the world, their disease and everyone or anything that says differently.

How can anything good come from a life of pain?

My response…

Pain has taught me that joy is possible. After all, I wouldn’t know the treasure a smile could bring if I didn’t know the misery of continual pain. I wouldn’t hold dear those moments of peace I experience if I had never lived through days of chaos and disorder. I wouldn’t appreciate the little things in life that so easily get passed by as nonsense or unimportant by most people if I hadn’t been in a place where those things were all that kept me going.

I don’t know what the next moment in my life or tomorrow will bring. I don’t know if today will end in tears or laughter. I don’t know if I will be able to muster up enough strength to fight my way through. I don’t know if my hands or legs will fail me when I need them the most. I don’t know if there’s really a light at the end of the tunnel or if I’m heading towards a tragic collision with the 6 o’clock train. There are a lot of things I simply don’t know.

But I do know one thing…MS cannot and will not define me. I used to be so brave. I used to be a tower of strength. I used to be a mighty warrior. But now…now I’m a warrior with shaky knees, trembling hands, covered in scars and tears in her eyes. I have been striped naked and bare because of MS, but today…today, I put my foot down and refuse to sink amidst the swirling tumultuous seas that push against me. I refuse to quit. I refuse to give up.

Today, the battle I am facing begins in my mind. I am reminding myself and you, that we are more than MS. We are more than the pain. More than the loneliness, struggles and fears.  We are true warriors! And although people may never understand the battles we face or see the internal struggles that take place in our lives, we stay in the fight…weak, but grateful for one more day.

Wear your medal of honor, bravery and courage proudly today. Hold your head high. You are a hero…a valiant, courageous, mighty MS warrior! You are strong enough. You are brave enough. You are tough enough.

When taking a shower hurts

There are times I wish everyone would just go away and leave me alone so I can clear my head and distance myself from all the drama, arguments, pain and chaos in the world; to find such a place where I can cry as much as I need to and let out a scream or two from time to time—even if only for 5 minutes.

It’s not always easy finding that perfect spot. The place where no one else is hanging around to judge you for simply being you. For me, that place just so happens to be in my shower. Somehow I am able to have my own crying party in the solitude of the bathroom away from the world as water gushes down my face. It just seems easier to think and cry in the shower. I have washed many tears down the drain in my lifetime.

Lately though, showers haven’t been so freeing. This may sound weird to some of you, but much of the skin on my face, arms and legs have become so hypersensitive that even water hitting me from the shower head hurts. And when I say hurts…I mean HURTS!

I’ve been pointing the shower head to the side wall and filling a large cup with water to rinse the shampoo out of my hair and off my body. It makes bathing a bit more complicated, but if I don’t want to smell like a skunk I have to change and adapt to the strange things multiple sclerosis does to me.

It seems MS is good at making simple things, complicated. Who would have guessed that clipping your fingernails could become a near impossibility to accomplish all by yourself? Or that things like signing a check, picking up the mail, vacuuming, getting dressed, or even brushing your teeth require more time, energy and help than ever before?

I never really thought about doing those things in the past. I just did them without realizing how much I was truly taking for granted. But today, many things have become a challenge for me to complete. It’s as if each day, as I pull back the covers to get out of bed, I start my journey to the top of Mount Everest. I don’t always make it to the top as the day comes to a close, but I press on anyway.

Multiple Sclerosis is the disease that keeps on giving and taking away. If you ask me, it’s pretty selfish. But regardless, I refuse to let it limit or define me.

REMEMBER: You have this terrible, often times debilitating, disease called Multiple Sclerosis and it’s trying to take over your body, your life…but you are not MS. You are an amazingly courageous person that can still love, dream, laugh, and hope for a better tomorrow. I’m loving, dreaming, laughing and hoping with you.

I don’t remember

This week, Monday came and went without incident. The only problem is that I don’t remember Saturday or Sunday having been lived through. I have tried hard thinking about the weekend but the only thing I can remember is that I can’t remember.

I think I went to the grocery store, but then again I might have done that on Friday. It rained much of the time and the temperature outside was much cooler…I think. I dozed off a few times in the living room while watching something on TV…I think.

There are so many possibilities that could have filled my time. It’s possible I might have buried a dead body in the back yard, I could have won a years supply of chocolate, or I just might have robbed a bank and am now a multi-millionaire. Who knows? I sure don’t.

The one thing I do know is that I’m still here breathing in and breathing out, alive, and ready for a new day, It’s weird how the brain works. You know how some people have selective hearing and can tune out things that annoy them? Yeah, well I think I have selective thinking.

It amazes me that I have no problem remembering the words to the Animaniacs theme song but easily forget that Tuesday is trash day unless I am reminded by an alert on my phone. If I didn’t have reminders to keep me on track I’d probably not get anything done.

I forget to call people back, answer text messages and respond to emails. It’s not intentional. It just is what it is. If I haven’t responded to you…sorry about that. If I forgot your birthday…again, sorry. If I can’t remember your favorite color, miss an appointment because I didn’t have it written down or forgot your name, trust me, it’s not on purpose.

Multiple sclerosis just has this way of scrambling my thoughts and at times turning them into mush. Sometimes I wonder how I get anything done at all.

Well, it’s time to restart a load of laundry that I left in the washing machine for a few days. Let’s see if I can get them re-washed, dried and put away without incident today. That is my goal. I’ll let you know how it goes.