I dare you to live

I love days when I am able to get out of the house even if it’s only for a wheelchair ride down the street or just through the front yard. The weather in Alabama is starting to cool off a bit so my outside adventures can happen more often now. On cooler days I love it when the sun is out, the breeze is blowing, the birds are singing, and everything in the universe seems alive.

Even though I have my moments of weakness and difficulties, I never want to throw the towel in and give up because of my limitations. I want to keep going until I no long can. Yes, I’m that stubborn. But to me that kind of stubborn can be a good thing. As long as I’m not harming myself or others, my stubbornness is the push I need to keep going. Believe me, if I wanted I would have given up months ago…years ago…but that’s just not in me to do.

When I was out in the yard yesterday I was thinking about my many trips years ago I made to the amusement park for fun. I don’t live too far from one and I remember riding the scariest of the scary rides. I had no fear. Now, Just thinking about some of those rides makes my head spin and puts my body on tilt. Thankfully I’m sitting down.

It’s kind of ironic that I can lose my balance so easily now. I wish I could exchange this roller coaster ride multiple sclerosis has given me in my head with a trolley ride instead. I have an endless roller coaster ride that I would gladly exchange for one that had stops, pauses and moments of stillness. Gone are the days of me riding daring rides. Now, because of MS, I carry one around with me everywhere I go that dares me to live.

Life is short and moments will come along that you can never get back. Don’t become so busy with things that have little to no importance in life that you later regret missing out on something that you could have done instead. You have to take each day as it comes. When you find yourself able to do something…do it. You never know if you will have that opportunity again.

If you can walk, get out and walk. If you can run…run. If you can dance…dance. If you can ride in a wheelchair…ride. Soak in every moment you can. You never know what tomorrow may bring. It may be sunshine, it may be torrential rains, but if you’re anything like me just pull out an umbrella and keep on going without any regrets.

While there’s life, there’s hope. Don’t let MS stop you from living. Let it stir you up to live life to the fullest. I dare you to live. Actually I double dog dare you!

MS Gets on My NervesMS WarriorMS Superhero

 

What is MS?

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, and the optic nerves in the eyes become damaged as the outer coating on the nerves called myelin gets 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 readily available and easily accessible (more accessible that any modern day business with wheelchair ramps and elevators) yet so few actually use the knowledge available to them to actually 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 video games; 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 with it. But now…now I’m more knowledgable than even some of the finest Neurologists out there. Maybe that means I’ve actually earned a doctorate degree. So call me Dr…Dr. Penelope! I like the sound of that.

I have an MS 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 degrees. One of those “I studied my butt off” degrees. Do you have an MS degree too?

Choose your own adventure…

I try so hard to get through my days with a bit of dignity and grace, yet somehow multiple sclerosis voids those plans as soon as I wake up. Sometimes I don’t even make it out of bed before my body decides to take off on a different road into the unknown. You would think I would have the unknown fully charted by now.

Do you remember those books where you could pick your own adventure to end the story with? You could navigate through the story and have things end with happy moments, disasters or surprises. The problem with my story is that there is never a suitable outcome to pick from.

Yesterday I had a choice of kitchen disasters, bathroom mishaps, vehicle troubles, and brain fog mistakes. But just when it came time to choose my adventure things shifted and I ended up with overdue bills needing to be paid, a lack of energy, muscle spasms and pain through the roof… more like a gazillion on the pain scale. I didn’t actually get to choose any of the chapters and found myself stuck in a perpetual cycle of ups and downs, blurred vision and ringing in my ears.

It’s a new day today so I’m believing for a better day, but so far I don’t see things shifting in my favor. I have already had to restart a load of laundry that soured in the washing machine because I let them sit wet for too long. I need to patch a hole in the wall in my hallway because I didn’t turn properly in my power chair. I also need to clean up a coffee disaster I created when I spilled the coffee grounds all over myself and the floor.

Maybe I just need to go back to bed and try again tomorrow. At least I woke up today with a smile and even though my MS life is challenging, it doesn’t win. I may not be able to choose my own adventure, but I do get to choose my own responses to everything that happens. My response will always be one of gratitude and thankfulness. Yes, oddly enough I smile my way through the pain. Not a fake smile either. It’s more a smile of determination and gutsy grace. We all have to push through the obstacles that pile up in our path. Even when we end up with a lot of difficulties and pain. We are warriors that way.

MS Gets on My NervesMS WarriorMS Superhero

 

you are

You are an amazing person regardless of multiple sclerosis… yes, YOU!

I had an extremely difficult time watching my career come to an end. It was the last thing I ever thought would happen, so when it did I took it hard. I did all I could to hide my cognitive problems from others. I fumbled my way through each day knowing that life was changing yet refusing to acknowledge those changes.

As a computer programmer, I could meet any challenge thrown at me and beat it. I developed some amazing systems and was proud of my accomplishments. When multiple sclerosis came along and began disrupting those abilities, I didn’t like it one bit. I would try programming but just couldn’t get my brain to function.

I struggled with everyday things too like trying to remember if I had washed my hair while in the shower, so I would wash it again just in case or forgetting I had something in the oven even with a timer set. Who could burn a casserole with a wonderful smell filling the house and a timer going off? Me!!! So, to get confused looking at code, the very code I, at one time, could decipher in my sleep…that was devastating.

The day I made my decision to resign, I cried. Not just one tear either, a flood and an ocean of tears. I covered it up well, but my heart was broken. Having to walk away from my job made me feel like a failure.

It’s been close to four years now and I still miss my job. I find myself trying to do in depth programing from time to time, but I can’t seem to do it without a cheat sheet for even the simplest of tasks. I’m still smart, I’m still me…I’m still an amazing person.

I do my best to try and stay focused on the big picture. My career wasn’t who I was. It was only a small part of my life. I am so much more than the things I can do… and so are you. For some reason, we put our identity in things that don’t really determine who we are. You aren’t a chef, a fireman, a store clerk, or a nurse. You are an amazing, wonderful, strong, inspiring person who has a lot to give even in your weakest moments.

I know it’s scary, the unknown. “How will I? How can I? What about? What next?” I know, it’s terrifying to take a step forward when you can’t even see the road in front of you. But regardless of how you feel, I can tell you with confidence that you aren’t a failure, stupid or broken. You are a somebody…and being a somebody is the best thing anybody could ever be.

Oh, and another thing… you aren’t multiple sclerosis either. Don’t ever forget that! You are so much more!

MS Gets on My NervesMS WarriorMS Superhero

 

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 keyboard or holding onto a spoon. Mealtime with me can get quite comical.

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 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’m 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 a black eye and a wedgie all at once. You are strong enough. Never forget that.

You are a diamond created by the crushing, pressing and fires in life… in other words by multiple sclerosis

There have beens days when I have looked back at what used to be and wished life was different. I have even envied others who didn’t have a disability. What? I shouldn’t think like that? Sure that’s easy to say, but thoughts happen, and in my head they happen more than I care to admit. I don’t think you would want to live a day in my head. It’s kinda scary in there. I can think of some crazy ideas and have some equally wild woe-is-me moments. 

I’m not going to lie and say that I’ve never wanted things to be different, because I have. Those thoughts seem to appear most when the struggle is at its worst. I don’t like feeling that way, but it happens. That’s just me being real.

I could let multiple sclerosis sour my life and cause me to become as miserable as my body feels with thoughts of what used to be and what could have been, or I could let it teach me to become a better person. I loved learning when I was in school, and I guess it has carried over into my adult life as well. Sometimes the learning process is hard, but the lessons are invaluable.

One thing having a disability has taught me is to be thankful. I think of the many people who won’t even have the opportunity to get through today and that’s enough to make me appreciate everything I have, whether it’s pain, the inability to do something or the complications MS throws my way. I’m thankful through it all.

I have also learned that fear is real but I can overcome anything if I take my day and break it up into tiny chunks. A friend once told me that it’s easy to eat an elephant. Not a real elephant, mind you, but a giant obstacle you are facing. She said you do it one bite at a time. So that’s how I break my day up…one bite at a time. I may find things hard to swallow at times, but when I keep at it I find that I’m able to get through it. That impossible elephant suddenly becomes possible.

Having a disability has prepared me for the rest of my life. It has given me a better perspective on what’s really important. That highly successful career, big house, fancy car, and designer clothes, they are no longer a focus for me. Why do we strive all our lives for stuff and titles? Those things don’t matter in the end. What matters is loving people and knowing that you are loved. Everything could be stripped from me and I know I would make it. Other people…I doubt they could get through even one hour of what we face, let alone a full day.

Those of us living with a disability have an advantage over the rest of the world. We learn early on to appreciate the roses and the sunsets as well as the storm clouds and looming tsunamis. We get to choose to live life on our own terms… not how other people think it should be done. It may appear strange to others, but we aren’t trying to win an award. We just want to get through each day knowing that we did the best we could with what we were given.

You’ve got this. Don’t ever doubt your strength or your worth. You are a beautiful diamond. You’ve been through the crushing, the pressing, and the fire. Now’s your time to shine!

MS Gets on My NervesMS WarriorMS Superhero

 

A life with multiple sclerosis is like moving day

Packing up your house and moving hundreds of miles away can be a daunting task for a healthy body. Add multiple sclerosis into the mix and it can become terrifying. That’s not an over exaggeration either.  Anyone that has moved can testify to it. The energy it takes to box up you entire life, load it into a moving truck and then unload everything a few days later, it wears a body out. A few years ago, I did just that. I had to make sense of the mess and the boxes that surrounded me as I worked to put my life back in order. To this day it’s still not back in order.

It’s kind of the same thing when diagnosed with MS. It’s as if one day life was going great and plans were set. Life seemed to be in order…then bam, it’s time to pack up and move from your normal, ordinary way of doing things into a new way of living filled with uncertainties, challenges and struggles, and almost on a daily basis. Sometimes those shifts are easy to make but sometimes they are the hardest decisions you could ever imagine possible.

When I got to my new house I had tough challenges making sure my living space was safe for a wheelchair user and that things were in a place allowing for my weak hands and limited reach… and making sure it was all as comfortable as possible.

I had to shift to using lighter silverware because my old ones were too heavy for me. I had a tendency to drop them in the middle of taking a bite. That created some interesting meal times. I also had to arrange my kitchen shelves much differently than a standing person would. My plates, bowls and glasses are all placed much lower in the cabinets so I can reach them without help. I actually use a grabber to pick things up that are only just a few inches away. Anything to help me save some energy.

There are so many changes we make as this disease progresses. One thing I have learned over the years, MS will strip you of your pride one way or another. It gets chiseled away little by little. You would think by now I would be pride-free, but I still have a hard time asking people for help. Not with everything, but sometimes I still find myself just wanting to do things on my own…even if I have to struggle in the process. And I don’t think that’s a bad thing.

It’s okay to have a stubbornness in you that refuses to give up. It’s okay to ask a friend to allow you to do something even if you struggle in the process. It’s okay to try, try, and try again all on your own. But it’s also important to know when to ask for help. There’s nothing wrong in asking someone to help you do something. The asking part gets easier, trust me. And besides, from my experience, people really do want to help. Many times they just don’t know what they can do so they pull back and do nothing. When you open up and become honest with others about your true, genuine needs, most are ready to jump in and be a support. We just have to ask.

And to the ones that aren’t a help…you learn who they are fairly quick and that’s when you start to lighten your load. I’ve throw a few boxes off the truck in my lifetime. Make sure the people around you are a support and not a hindrance. It’s okay to lighten the load.

Moving is tough…but it’s also rewarding. You learn who your true friends are in the process. Not may people are going to carry a heavy couch up three flights of stairs for you. Hold onto those people and be sure to let them know how much you appreciate them. Sometimes we forget to tell them.

brave

People may never see your struggle with multiple sclerosis…you are brave even then

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. 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 my world seems 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, struggles and pain. You are brave even then.

MS Gets on My NervesMS WarriorMS Superhero

 

stare

What do you do when people stare at your disability?

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.

I dream of the day multiple sclerosis is cured…today wasn’t that day

It would have been wonderful to have awakened this morning 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 can’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 now.

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. It’s actually quite comical when I jot something down on the computer then go back and read it puzzled wondering what was I thinking. That really happens.

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 get things done.

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 now 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.

I have created some of my own ways of doing thing in order to stay more independent. For instance, I have a rope hanging on the door knobs of several doors in my house, my front door being one of them. It’s actually a rope curtain tie back. I use the rope so I can pull the door closed as I leave the room in my wheelchair. An electric door would do wonders, but I made my own door closer that works pretty well for me. It gets the job done at a fraction of the cost.

Remember…your body’s weakness isn’t your failure. It’s simply a stepping stone to a new way of doing things. Go out there and conquer your day today even with a disability, in spite of multiple sclerosis.