Being brave in the face of uncertainty

The first thing I do every morning is pour myself a cup of coffee and sit in my favorite chair with my laptop to write my morning thoughts for you. If someone would have told me several years ago that my thoughts about my life with Multiple Sclerosis would be read by people all around the world, I would have probably looked at them crosseyed and lopsided.

I never imagined that my words, put together so early in the morning, would matter…let alone make sense. Yet somehow they come together and bring hope to all who read them.

Today, I feel such amazing and unbelievable thankfulness for you. On days when I’m struggling, just knowing that you are sitting there across the miles reading my rambling words, tender encouragement and quirky sarcasm, warms my heart and gives me a smile that makes each day worth waking up to.

I smile because I know that there’s someone else out there just like me. Someone who at times feels overwhelmed, sad, exhausted, and alone but, who just like me, puts their brave on and greets the day with determination and courage. No one will ever fully understand the battles we face each day and the uncertainties we deal with, many before we even pull back the covers to get out of bed.

People will never hear the arguments I have with myself as I look over the list of things needing to be done in the day knowing full well that my body is ready to collapse. They will never understand the strength it takes to hold on when I’m feeling beaten down and worn out. They will never see the tears that leak through the smile I’ve carefully put in place. They will never know of the ache in my heart as I have to cancel plans I was looking forward to being a part of. And they will never grasp the full extent of the challenges I face moving around in a world that is not fully accessible to someone in a wheelchair.

Some days are good and some, to be honest, are downright terrible. But knowing that others are facing similar challenges makes the load considerably lighter, and the world seem a bit less crazy and more manageable.

If there is one thing I could say to you today that will help bring some ease to your heart and the struggle you are facing, it’s this…

You are an incredible, amazing, beautiful individual with a future still ahead of you that is filled with endless possibilities. Your life hasn’t ended because of MS or because of the progression you are experiencing.

I know at times you think that things are over for you, but you really do have great moments ahead that need to be experienced and that you are to be a part of. Many of them are even things that you haven’t even dreamed of yet. Good things. Great things. Amazing things. And one day you will look back on today and be thankful that you kept fighting.

You are brave, even when you don’t feel like it. Even when you are weak and tired. Even when all you can see in front of you is a life filled with uncertainties. You are brave even then.

I dream of the day Multiple Sclerosis is cured…today wasn’t that day

I fell asleep last night in my recliner. I didn’t have the energy to make my way to the bedroom in order to climb into bed. I’m thankful that my recliner is comfortable. I didn’t wake up with any neck cramps or unusual body aches…at least none different than my normal MS aches and pains.

It would have been wonderful to have awakened to a life without multiple sclerosis. I dream about that sometimes. I think it’s more wishful thinking for me than anything, but who knows, if not today, maybe tomorrow. There’s always hope for tomorrow.

And even if a future cure won’t give me back my mobility due to continued atrophy in my brain and spine, if it will help the newly diagnosed patients or those with less progressive types of MS, I would gladly jump for joy…even if only from the inside. I would celebrate along with everyone. That would be a monumental day.

I never grew up dreaming that I would have a life with a chronic illness filled with constant weakness, problems and pain. I don’t think anyone does that. On career day, multiple sclerosis wasn’t even an option put in front of me.  I wanted to be a teacher, a singer and a graphic designer. What a crazy combination, right? I would have been able to sing and illustrate my way through a classroom. (grins)

Now, because of MS, I don’t speak well enough to teach, my singing voice won’t squeak out a proper note to something as simple as Mary Had a Little Lamb, and the color clarity in my eyes is all screwed up causing my art to be a bit off. But you know, I still use those skills. I just use them in different ways.

My speaking has become best understood in its written form. Writing my thoughts down gives me enough time to pause in order to keep from jumbling words up too bad. I still make a ton of writing errors, but they are easier to correct than losing my train of thought in the middle of a conversation.

Singing is now a long past memory and my hands are much too weak to play the guitar. (I was a classical guitarist at one point in time.) When I try to sing, it sounds more like a wounded cat than an intelligible song, but that doesn’t stop me from humming a tune when my heart is glad or from enjoying the beautiful music others create.

As for my graphic design skills, it just takes me a whole lot longer to create something that I see in my head. I find that I have to rely more on learned color theory than my actual eyesight and I have to be more patient with my hands when they won’t stay steady. That makes it a challenge, but somehow I still produce great work.

Because of MS, I have learned to appreciate the things I am still able to do. I can’t let the fact that I can’t do something get me down. There’s always a way if I get creative enough.

Don’t lose hope in finding an alternative way to use a skill you’ve built out of passion. Never stop pursuing your dreams just because multiple sclerosis gets in the way.

Give yourself the needed time to grieve your losses but never lose the ability to dream. Those of us with disabilities are some of the most creative geniuses around. Just look at how well you have already adjusted your way of living  to compensate for a weakness.

Remember…your body’s weakness isn’t your failure. It’s simply a stepping stone to a new way of doing things.

alone

You did not cause Multiple Sclerosis

I want to talk about a topic that many people either avoid or choose to ignore. It’s something I see very little support for yet affects over half the population of people living with Multiple Sclerosis as well as those living with other chronic illnesses like Parkinson’s, ALS, Lupus, EDS, Asthma…too many illnesses to even list.

If this doesn’t affect you, you can simply pass up today’s post as something to be thankful for since you are among the few who have been kept from the judgements of others. For the rest, I hope you leave encouraged in knowing that you aren’t alone and that you are an amazing person even while living with a disability.

I want to talk about faith and the disabled. Regardless of your background or beliefs, it seems there is always someone who has an answer as to why you got sick and how to be healed…and if you aren’t healed then there is something wrong with you. I have been approached with that very thing more times than I can count.

I have been told everything from I didn’t have enough faith, to I must have some unconfessed sin in my life, to I must really not want to be healed…all of which are untrue. If you are anything like me, once diagnosed you spent hours searching your heart for answers of where you went wrong in life only to come away exhausted and feeling defeated.

Something else that gets piled on top of all the guilt that is already weighing you down is when someone shares a story with you of how a person was healed of cancer or a heart condition…and you can be too if you just believe. I don’t think people realize how much it hurts to have a comparison made like that. It comes across, yet again, as saying you must be doing something wrong or that you don’t have enough faith. I’m sure that’s not the intent of the comparison (at least I hope it’s not), but that’s how it comes across.

If you have had something like that happen to you and are carrying around a boatload of guilt because of it, I want you to know that there is nothing wrong with you. You didn’t cause MS due to past mistakes or terrible wrongs committed. It’s not because you lived a bad life, said the wrong prayers or don’t have enough faith. Multiple Sclerosis just is. It’s a reality that can’t be explained away. It isn’t caused by a lack of faith either. It affects the best of the best, the worst of the worst and everyone in between.

Don’t hold onto the guilt others have tried to place on you or that you have put on yourself. Let it go and shake it off. I know that’s easier said than done, but I also know you can do it. Don’t believe the lies that take off running through your head. You are a beautiful person with an amazing amount of strength…more than you realize. You are not the cause of MS in your life, never have been and never will be.

We live in a world that worships physical perfection. The helpless, vulnerable, chronically ill and impaired don’t fit that picture perfect image. People are so good at pointing fingers and trying to place blame where it shouldn’t be, but in the process they are actually causing us harm, not help. And just so you know, they are wrong.

Maybe, just maybe, those of us with a disability are here to show the world that the “perfect” people are the flawed ones. Maybe, just maybe, we are here to teach others how to love and truly be compassionate without judgement. Maybe, just maybe, we are changing the world through our suffering…one tear at a time. Maybe, just maybe, the strength we carry today is helping to build a bridge for those who will follow tomorrow. Maybe, just maybe.

Disabilities are a part of life. They have nothing to do with how much faith someone does or doesn’t have. They have nothing to do with how much someone prays, reads their Bible or takes part in worship. They do, however, have everything to do with being human.

“Part of the problem with the word ‘disabilities’ is that it immediately suggests an inability to see or hear or walk or do other things that many of us take for granted. But what of people who can’t feel? Or talk about their feelings? Or manage their feelings in constructive ways? What of people who aren’t able to form close and strong relationships? And people who cannot find fulfillment in their lives, or those who have lost hope, who live in disappointment and bitterness and find in life no joy, no love? These, it seems to me, are the real disabilities.” – Fred Rogers

You are strong enough

My right hand has grown increasingly weak. At first, it had just a slight tremor that was annoying but manageable. Now even when I’m holding it in a resting position, thankfully the tremors aren’t as prominent but it has a tendency to curl up making that hand a bit useless. I have trouble even pushing a key on my computer or holding onto a spoon.

The bad thing for me is that my right hand is my dominant hand. I have had to learn to do things with my left hand more and more. It’s not always easy, but I somehow seem to get things done. That’s kind of the way my life with multiple sclerosis has been from the start: symptoms show up that hinder my normal every day activities and I have to find a work around in order to keep functioning.

I hate it too. It’s amazing how much you rely on a certain body part and don’t actually realize just how much you do so until something happens to disrupt its use. I’m thankful for the parts of me that still work, but I still have a hard time with the parts of me that don’t.

I would be lying if I said it doesn’t bother me. I find that if I allow myself to hang out thinking about my weak hands, legs, vision, bladder, and all the things that I can no longer do, I end up in a puddle of tears. I have to force myself to keep moving forward and to find something good in the chaos. I can’t allow this disease to cripple my thoughts as it does my body.

Sometimes I put on a funny movie to help me shift my focus. Sometimes I talk with a friend or get involved in volunteer work. Sometimes I talk to myself and remind myself that I’m still awesome, even with MS hanging around.

You have to do that in order to keep your sanity. I have found that because of MS, my body is weak…but me, I’m stronger than I ever thought possible. I may not be able to open a pickle jar or hold onto a glass of water without using two hands and even then spilling it, but I am a warrior deep down. Sometimes my warrior roars, other times it is what holds me together when the struggle gets too hard to bear.

You got this. Even when you feel out of control and surrounded by struggle after struggle, you got this. Allow your inner warrior to come out and give MS the middle finger, a black eye and a wedgie all at once. You are strong enough.

Even with a disability I am more able-bodied than many people today

There are all kinds of people in this world. Some will help you along the way while others will attempt to push boulders into your path. Living with a disability is not always easy. I have met the rude, uncaring types of people who watch as I struggle to open a heavy door instead of stepping in to help and I have come across the ones that choose to give me the death stare as I pull into the disabled parking spot at the grocery store only to turn away (hopefully in shame) as soon as they see me wheel my way inside from a wheelchair.

It’s sad really, that we as a society have become such critical, judgmental, selfish and uncaring people. It can be seen everywhere you turn. You don’t have to have a visible disability or even be disabled to witness it.

So, how do you function as a person with a disability in a world that cares more for itself than others? What do you do when people are rude? Mean? Angry? Do you respond in the same way as them…rudeness for rudeness? Hate for hate? Anger for anger?

That seems like the easy way, doesn’t it? It’s easy to throw out a few hurtful words in response to someones mean-spirited actions, but just because it’s easy that doesn’t mean it’s the right thing to do.

How people act is not about you—it’s all about them. You can tell a lot about a person just by watching what they do, how they act, and what they say. How you respond to all that craziness though, that’s all you. Don’t let people’s wrongful, uncaring and bigoted actions cause you to stoop to their level.

Everything we go through in life becomes part of the person we are. We aren’t born with great character, integrity and honor. It’s something that is developed in us through the struggles we face, and living with a disability definitely gives us plenty of opportunities to keep working on all of it too.

Today, if you are met with a challenge from someone’s rude and insensitive behavior, take a deep breath, allow your emotions to calm down, then respond as a person of character rather than being just like them. Show them, and yourself, that even though you have a disability, you are better than they are. Your are more able-bodied than them.

Step away and leave them behind you in the dust of their own destructive chaos. Instead of wrestling with pigs, you’ll be soaring with eagles.

I have an MS (Multiple Sclerosis) degree and didn’t even know I was studying for it

I have an MS (Multiple Sclerosis) Degree and didn’t even know I was studying for it. It’s not an honorary degree either. It’s a real life, up close and personal, in your face degree. One of those “I studied my butt off” degrees. My next step is to get my Doctorate…and that’s not too far off. With the amount of time I spend at hospitals, doctor appointments, therapy and the pharmacy, I should have my doctorate in no time flat.

I have had people ask me, “What is MS?” If I say it stands for Multiple Sclerosis. It’s a chronic progressive disease where the nerves in the brain and spinal cord become damaged and eaten away by the immune system causing numbness, speech impairment, muscle coordination difficulties, blurred vision and severe fatigue (and that’s just the tip of the iceberg of what we go through)…I tend to get a blank stare and “huh” comes tumbling out of their mouth. Either that or they proceed to give me their cure for this incurable disease or tell me about a relative of theirs with MS that died.

It’s interesting to me that we live in a time where knowledge is powerful and easily accessible (more accessible that any modern day business with wheelchair ramps and elevators) yet so few people actually use the knowledge available to them to truly KNOW anything. We are pros at the latest gossip and celebrity news; we know all the cheat codes and hidden passageways in the newest released game; we even know the difference between tap water, distilled water, spring water and mineral water; but when it comes down to things that actually matter, we are fairly ignorant.

If I were to write an entry in an acronym dictionary on what MS stands for, it would look something like this…

MS – an acronym for:

Multiple Sclerosis
Messaging Short
Many Sores
Majorly Sexy
My Strength
Mighty Strong
Many Smiles
Making Strides
Moving Still
Monster $(^&
Mystery Solved (coming soon to a theater near you)

The next time someone asks me, “What is MS?”, I’m going to whip out one of my acronyms because even in our highly intelligent and knowledge driven society, people can’t seem to grasp an understanding of Multiple Sclerosis. But I don’t blame them too much, I still have trouble with MS and I’m the one actually living with it every day.

Don’t get too discouraged when you find people are clueless about MS. I didn’t know anything about it until I was diagnosed. But now…now I’m more knowledgable than even some of the finest Neurologists out there. Maybe that means I’ve actually earned that PhD after all. So call me Dr…Dr. Penelope! I like the sound of that. Are you a Dr. too?

Multiple Sclerosis has given me superpowers

Multiple Sclerosis has given me numerous superpowers. I have been known to fly across the room from time to time even without my superhero cape on. I teleport things like my keys, the TV remote and my phone to strange places in order to keep them safe from thieves. Who would think to look for those things in the dishwasher, washing machine or the freezer? And one ability that has become annoyingly prominent is supersonic hearing. Really, it’s true.

It’s amazing how many faint and normally unnoticed sounds I can hear now. Just today I noticed that when I shuffle papers around on my desk it sounds more like a tornado getting ready to touch down than actual paper.

I have to set my TV volume really low most of the time because I can actually feel the sounds rattling around inside my head when it is turned up to a normal volume. It’s not very comfortable having sounds rattling around in your head like that.

One of the worst moments for me is when I’m in a room with a group of people talking all at once. All the voices and sounds bouncing around in the room start bouncing around inside my head too. It’s almost as if the nerves in my ears go into overload and I just want to throw my hands up and tell everyone to shut up.

I find myself sitting in the quiet more now just because it’s so calming. No music, no TV, no chatter…just me, my coffee and my computer. It’s funny, even typing on my keyboard starts to get to me after a while. Of course I do more hunt and peck now days so it’s not as loud as someone typing 70 words per minute.

I noticed that my hearing has become so sensitive that any sudden or unexpected sound catches me off-guard and I jump like crazy whether it be a ring-tone on my cell phone, a knock at the door, the buzzer on the dryer, or even the new mail sound on my computer for my email.

I can hear whispers from across the room too, but don’t tell anyone. I don’t want people to know that I can hear their secrets. Shhhh!

Have you discovered some superpowers of your own? We really are uniquely amazing people…us MSers. MS brings out some truly awesome abilities in us. Oh, wow…I just dropped my coffee cup (with a lid) and it landed right side up. Not a drop was spilled. I don’t know what kind of superpower that is, but I’ll take it.

Some say that I’m broken

I broke my mother’s favorite vase when I was 10 years old. I remember the moment it fell to the floor. It was as if everything was happening in slow motion. I tried desperately to catch it, but my hands just weren’t quick enough.

There it lay on the floor in four broken pieces. My heart sank. All I could think about was my mom discovering the vase and scolding me for playing in her room. I knew I shouldn’t have been in there, but I wanted to try on some of her jewelry and thought I could sneak in and play dress-up without her knowing. She was surely going to know now.

As I looked at the pieces, I remembered a time when my mom used superglue to fix the arm on a figurine, so I decided I would do the same thing to fix my mistake. I did a pretty good job at it too. There were a few drips of glue on the outside of the vase, but mostly, you couldn’t tell it had even been broken.

I carefully positioned the vase back where it always sat and prayed she wouldn’t find out. Later that day, guilt got the best of me. I couldn’t bear the thought of trying to hide something I had done wrong any longer. It was eating at me with every minute that passed. I knew what I needed to do, so I went into the room where my mom was sewing and confessed the whole thing. I was punished, but the guilt was gone and I was able to breathe once again.

To this day, my mom has that broken vase. Most people would never notice the cracks, but they are there. If you hold it up to the light or try to fill it with water, you can see all the imperfections and mistakes I made while trying to glue it back together. What once was broken, was made even more beautiful with cracks and dried glue, because now that vase has a story to tell.

Some say that I’m broken. They look at my past mistakes in life and even at the fact that I’m living with multiple sclerosis, and all they seem to see are cracks and imperfections. But the most amazing thing happens when you hold me up to the light. You may see my broken places…but, you will also see what makes me beautiful, because in those cracks are the stories of overcoming and standing strong.

Because of those imperfections, I am who I am today…broken bits and all. Light comes pouring out of the gapping holes. My scars tell my story. My MS scars may be invisible to the world, but their effects are made real as I struggle to get through the day. I may not be able to walk more than a few steps on my own, I may not be able to change the sheets on my bed without a fight, I may not be able to hold onto my coffee cup without using two hands…but I keep fighting anyway. I push on. I keep going. Sometimes through a sea of tears, but I keep going.

You have broken places and cracks too. Your mistakes and hurts are real, as well as your disability, but so is your beauty. Let your beauty shine through you and let your story inspire others. Just because you have cracks doesn’t mean you are worthless. You are not broken…you are a container of life, love, brilliance and beauty. Let those things spill out today.

The story in your scars may be just what someone needs to hear in order to keep going.

cry

But I can’t do that anymore…

Life changed a lot after multiple sclerosis came to live with me. Many emotions surfaced that I didn’t even know existed. Fears, doubts, worries…MS forced them all out into the open. It was a time in my life when chaos and confusion became the norm and I didn’t like it at all.

I guess some people would think that that’s a terrible thing for MS to do to me. I was sinking fast and feeling as though, at any minute, I wound drown. How could I let go of all the confusion swirling around me when I couldn’t even get dressed by myself? How was I to live my life when everything around me was in turmoil? How was I supposed to keep going?

I decided to take out two pieces of paper and make two different lists. At the top of one page I wrote “Things I can no longer do” and began writing down everything I could think of. It was an easy list to make and grew quick…really quick. I filled up one side entirely and was doing my best to hold back the tears as I saw my dreams and perceived future written down in front of me, lost and gone forever.

I then switched my focus to the other piece of paper. At the top I wrote “Things I can do.” At first I just sat and stared at the blankness of it all. I had a hard time even coming up with one thing to fill the space. I decided to shut out everything around me and simply write down the first thing that popped into my head. That first thing just so happened to be “I can laugh.” That was the first thing I wrote down on my can-do list.

Before long, the list grew and eventually it outnumbered the can-no-longer-do list. I discovered during my list making that not only can I laugh, but I can nap more than once in a day, pimp out my wheelchair giving it a coolness factor, watch reruns of “I Love Lucy” at midnight, and have an excuse for getting out of helping someone move. I realize I could also make up amazing new words, fall up the steps of my stairs, and still remember the theme song to the Animaniacs.

My limitations suddenly became smaller and smaller. I found I could do so much more than I gave myself credit for. I thought of many regular things too, like make a sandwich, change the sheets on my bed, cut my toenails, and vacuum the floor. Granted I may be slower doing them and compete them in very unconventional and creative ways, but I can do them and that’s what matters.

I had been so focused on the things I couldn’t do that I was missing all the things I was still capable of doing. That day my life changed. I started to look at life differently. I started to look at MS differently. It’s almost as if I went to the eye doctor and got a new pair of glasses. I was seeing everything brighter and with more clarity.

Which list are you focusing on? Are you more apt to put all your focus on the things you can’t do or on things you can do? Try it. Get out some paper and make two lists. Embrace the life that you have right now. Focus on what you CAN do…so focused that your can-do list far outweighs any other list you could possibly make. I think you will be amazed at just how many things you are capable of doing.

I get hurt in some of the weirdest ways

I have noticed that people living with multiple sclerosis get hurt in some of the weirdest ways. I know for me, I’ve had my fair share of bruises, broken bones and crazy predicaments that I wouldn’t have experienced any other way.

A couple of years ago I decided to sit out on my back porch to enjoy the beautiful day we were having. It was a little chilly out, but still a pretty day. I was barefoot, which normally I am, and took the few steps needed to get to my lawn chair.

As I walked out, I stepped on a tiny piece of wood that jabbed into my foot. I could feel the slight change in elevation under my foot, but no pain since much of that foot is numb. I checked the bottom of my foot and although it was bleeding, all seemed okay.

After a week, I noticed the sore it had created just wasn’t getting better. I waited probably way to long, but eventually went to the doctor to get it checked out. The x-rays were inconclusive so surgery was ordered since whatever was going on was much too deep for an office visit to remedy.

The doctor told me that when she cut into that area of my foot, sure enough, there was a piece of wood embedded super deep into my foot. I was told that had I not had it removed, it could have gotten really bad. I’m glad I had a doctor that was willing to do all that was needed to find out what was going on.

Yesterday I had another foot accident. (For some reason my feet seem to be the things I hurt the most.) I was in the bathroom transferring from my shower chair to my wheelchair when my feet slipped on the wet tiles. My body came crashing to the ground and my right foot jammed against the corner of the sink cabinet.

It was excruciatingly painful and when I looked at my foot, my third toe on my right foot was crooked…like really bad crooked. After making my way up from the floor and getting dressed, I tried to determine what was wrong. That toe seems completely broken and won’t move back to a normal position. I have an appointment to see the doctor today so we’ll see what’s up. Ugh…MS!

I have sprained ankles and wrists, gotten burned, cut myself, and broken bones all because my body wouldn’t cooperate. But you know what? I keep going. Sure I may have to lay up in the bed more than some people do, I may spend too much time in waiting rooms and doctor’s offices, I may require help doing some of the simplest of things ever, but I’m still going strong.

You can’t let your weaknesses and limitations stop you from living. They may slow you down but don’t let your slowness keep you from finding enjoyment in your day. Find your smile today…and if you can’t find one just imagine me sprawled out on the floor buck naked having to call a neighbor to come and help me get up. That will either make you laugh out loud or run away screaming in fright! Either way it will make your day better.