Summer is the Carnival of Life

By Lauren Kovacs

Step right up and get your tickets for the carnival of summer with MS. Don’t be shy about entering the MS fun house. Try and visit places before the landscape melts in the summer sun. Distortions can be fun and dealt with at the same time.

MS is not fun, I know. Attack it with caution and preparation. Fatigue is an annoying clown that follows you around the carnival. It taps you on the shoulder just when you get your cotton candy. It makes you see it as a fluffy pink pillow. A nap would be nice. Take charge and eat it. I hate clowns.

Sandals can mean cool (temperature wise) feet. Cool feet often lead to cooler bodies. If you are a lady treat yourself to a pedicure first. I recently could not expose my toes because my son told me my feet were “jacked up.”

Stay cool by hanging out in the shade, if you skip a ride, for example. Eating ice cream or a snow cone can help cool you. Just use two hands because fatigue and/or heat can bring on tremors. I learned this by launching my ice cream cup at my mother-in-law. It missed and we laughed.

Laugh at yourself. MS can be funny. It can be very mean, but humor helps calm that beast. If you make light of something you did, it seems to help everyone to move on. Yes, I threw my ice cream cup. Funny. Next.

Wear wrap-around polarized sunglasses, and a hat that you can wet down. I had my manual wheelchair, when we went to a theme park recently. One of my sons pushed me and I occasionally closed my eyes to block out over-stimulation from sights. The glare was reduced when my eyes were open. Too much to look at can increase my fatigue. Glare drives me nuts.

Drinking only water can help limit bathroom trips too. I love soda and I often need the kick from caffeine. However, sticking with water is better. Fewer bathroom trips also help limit fatigue. Wear an incontinent pad, if you need to. They are bulky, but if you are sitting no one knows.

Limiting sights and stopping in shade helps slay the fatigue clown. Only drinking water limits the energy exertion involved with numerous bathroom breaks from caffeinated beverages. Proper sunglasses and hats you can wet down make a big difference. Wearing sandals, if your toes are pretty, can help keep your body cool too.

The summer carnival of life with MS can be tough to navigate. We are always trapped in the fun house. I know it is not really fun; however, the many distortions in our lives can be dealt with. Preparation and humor can help smooth that wavy mirror in the MS fun house.

Go enjoy yourself. Limits are all around us, but do your best. Shade, frozen treats, and limiting energy sucking activities can assist us. Try and stay involved and fight the inner hermit. Send that fatigue clown to the naughty corner, while you enjoy life. Know your limits and have no regrets at the same time. Have a churro. Chocolate melts.

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Ice Ice Baby

By Kristi Krause

Last summer I was mid-relapse and hating life. I like to think of flares and relapses as living in a “dark cloud of despair”; a type of brain fog that grows thicker, heavier and angrier as the day wears on to slowly smother the life out of you. Invisible, yet it can not be ignored. Working then felt disastrous, but my patients and coworkers never caught on to my struggles. I was new to MS and beyond frustrated at how much power it had over me. By lunch break, I would send a hysterical text to my husband, “I just can’t do this anymore”. He, my neurologist, and reality joined forces to try to nudge me toward leaving critical care. To that, I stubbornly responded, “Absolutely not, it’s my comfort zone!” The fear of a future reviewing charts in the muggy, stale basement of the hospital fueled my search for help with symptom management.

I read about how cooling measures increase the transmission ability of nerve impulses through areas of brain damage, but had no idea that there were vests, scarves, and gloves made for this purpose. The thought of wearing ice sounded miserable because feeling cold is fairly loathsome. I was desperate when I put it to the test one day at work. Between the disaster direct admission to ICU and my tracheostomy patient having hourly panic attacks, I was severely fatigued by first break. I escaped into the supply closet, grabbed an ice pack to put on my head and five minutes later, the brain fog was gone and I was high. It was almost as glorious as a double espresso shot! Returning often to the closet for the next fix, I became an instant ice junkie.

I started browsing the internet for cooling items and ordered most of what I found. Some were duds and others a godsend. I worked with wearable ice packs under my scrubs, and had extra packs in the freezer to change out at break and before getting into the hot car to drive home for the day. My MD wrote a prescription for a cooling vest so insurance would reimburse the cost (instructions on how to do this are online). I have both ice and phase change inserts for it and I use the vest while  working out during most of the year.

My favorite scarf to wear while cleaning the house drapes around the neck for carotid cooling. I still have to take breaks  while trying to accomplish simple household tasks that were once no big deal, but far fewer and shorter breaks than normal. Eating a popsicle during said break restores energy even faster!  Cooling items can be worn to summer sporting events or for “pre-cooling” on the way to dinner, the grocery, whatever. Music venues, however, are not so welcoming for wearing ice, as security believes you might be smuggling bags of illegal substances. Do not try this! Instead: arrive well hydrated, have a drink, eat the ice, ask for more ice, eat ice the whole time you are there, use the hand fan you brought, and go home before your body begins to feel weird(er).

Summer can be embraced with excitement for people with MS. Cooling measures can allow even the least mobile of us to get outside and soak up the sun. The benefits of sunshine versus vitamin D supplementation are possibly numerous and poorly understood, but why wait for science to figure it out? I am a simple girl; if nature made it and we ran around naked in it for thousands of years, then I believe it might good for us to stop being afraid of it. I do know that with safe levels of sun exposure, there can be a boost in mood, the body can regenerate ubiquinol (ever heard of CoQ10? Hello mitochondria!), and produce immune-modulating effects by generating the hormone, vitamin D. My tips for maximizing these benefits are to drink/eat something green before going outside, waiting about thirty minutes before slathering yourself with sunscreen (depending on where you are, so use common sense), and don’t wash off the vitamin D from your skin as soon as you go indoors.

MS tends to emerge at the worst times in a young person’s life, and new mothers are not exempt. Summer heat can be doubly threatening to someone expecting. As long as I have something frozen on my body, stay hydrated, and remind myself to take breaks, then the dark cloud of despair is kept at bay during summer. My ice vest and cooling gear are even more important to me now that I am pregnant! I workout at a snail’s pace, am easily winded, have frequent temperature fluctuations and painful cramps in strange places. But I still get out there, however sad my little workouts may seem, because I am exercising for two now. Sometimes it takes hours to hit my mileage goal for the day, but I would rather be slow than say “I can’t.” Baby and I will be healthier and happier because of it. I imagine that when August arrives, I will be waddling around the track, wearing my ice vest blissfully unaware of the sweltering misery that I have been warned about when one is due in late summer.

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Black Swan MS

By Stacie Prada

I learned about Black Swan events recently as they relate to investing. Multiple sclerosis symptoms and progression seem to me to be personal Black Swan events. Nassim Nicholas Taleb developed the theory based on the history of black swans being thought of as an impossibility.  It was a known fact that they didn’t exist. So when black swans were discovered it was a surprise and significant, and in hindsight black swans seemed like something that people could have predicted or should have expected.

Being diagnosed with MS was an enormous Black Swan event in my life. Suddenly the extreme fatigue, numbness and bowel issues that held no explanation for many years were obviously indications that something was wrong with my body. The signs were there, but I didn’t recognize them as related to each other or of any significance. Given how much these symptoms impacted my life, hindsight makes me seem foolish for not connecting them to a major health issue.

Most recently, my feet started buckling more frequently with a frustrating experience of losing the ability to walk temporarily. It surprised me.  It made me realize that MS is affecting my legs much more than I’d thought.  And in hindsight I remember all of the dismissible moments when my feet would buckle.  There were times when one foot would stop supporting me while standing among friends. Other times while walking, one foot would shift so that I lost my footing on flat ground and needed to catch myself. I just thought they were odd, one-off unexplainable experiences.  Now I recognize them as a very common MS symptom that I already knew about – spasticity. What is obvious to me now seems like it should have been obvious to me then. In my defense, the frequency and impact previously had been low.  Now that they’ve increased, I see a pattern and progression.

Now that I know what’s happening, I can work with my doctor to try to offset how my body is behaving. I’m continuing to do stretching, strengthening and movement activities, and I’m adding medication, massage and physical therapy. My shoe choices are also changing to reduce embarrassment and possible injury.  It’ll take time and effort to see if I can change the course of how MS affects me.

It’s like reading a book or watching a movie where all will be revealed at the end.  I’m living in the middle of my story, and by the end the mysteries of my body will be pieced together, explained and understood.

*Stacie Prada was diagnosed with RRMS in 2008 at the age of 38.  Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at stacieprada.blogspot.com

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What’s in Your Junk Drawer?

By Penelope Conway

We all have one – that infamous junk drawer that collects a little bit of everything from spare keys, to half used chapstick, to pens, to some unknown mechanical looking thing that nobody is quite sure what it is, to just plain junk. There seems to be at least one drawer like that in every person’s house. Even the most put together house has lurking somewhere in the kitchen, office or bathroom, a junk drawer.

It goes unnoticed until a pen is needed to jot down a quick note, then almost as if by habit you go to the junk drawer. Immediately you open the drawer and begin tossing items back and forth as you rummage through the contents in search of that much needed pen.

You keep telling yourself that someday you’ll clean that drawer out. Someday, you’ll organize it. But every time you open the drawer, the task seems too overwhelming, too time consuming and just plain hard.

Does this sound familiar?

Just like that junk drawer, we have places in our heart where we hide away bits and pieces of the brokenness we have experienced because of multiple sclerosis and other painful life events. It’s messy in there.

I know I stuffed away my own share of hurts, fears and difficulties. Things like the anger I felt because I had to end my career due to my MS progression, the defeat I encountered when I started using a wheelchair, the abandonment I went through due to lost friendships, the fear I experienced because I found I was no longer able to be as independent as I was before MS came along, and the disappointment I felt because I could no longer wear heels. Yes, even my shoe choice was a difficult thing to face.

I kept telling myself I would face those fears, disappointments and pain someday. Someday, I’ll address those things head on. But every time I opened that drawer in my heart, the task seemed too overwhelming, too time consuming, and just plain hard.  So what did I do? I ignored it.

Every once in a while I would forget it was there and accidentally open it up. The emotions would start spilling out and I would shut it as quickly as I could.

“Nope, I’m not dealing with that. I’m not ready,” I would say.

But I knew I needed to take some time to dump everything out, sort through what should stay and what should go, and then take the trash out. It wasn’t easy. I actually think it’s one of the hardest things in life to do, but it was time I let go of the hurts and fears weighing me down.

Today is a new day and you are worth too much to hold onto all those weighty emotions tucked away in your junk drawer. Set some time aside and start clearing out the clutter so you can make room for the beautiful things that you deserve in life. You are worth it.

*Penelope Conway was diagnosed with Multiple Sclerosis in November 2011. She is the author and founder of Positive Living with MS (positivelivingwithms.com) where she uses humor and her own life experiences with MS to help others navigate this unpredictable journey. She believes that staying positive and holding onto hope is the key to waking up each morning with the strength to get through the day.

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Spring!

By Lisa Scroggins

Finally, spring is here, and I feel more energized than I have for some time! I suppose it’s a combination of the improved weather, and an improved outlook.

When I saw my neurologist in February, I asked about Lemtrada as well as Ocrevus (which has since been approved by the FDA). My doctor wasn’t very encouraging about either option, and I was frustrated. I talked with my husband about getting a second opinion. I wanted the latest, greatest treatment, and I wanted it now!

I suppose I’m the classic dissatisfied person with long-time MS. Things really went south for me a few years ago, and I won’t lie: I was deeply sad, and shaken by the newest losses I was experiencing. We have made trips to see a specialist, and had high hopes for something new that might help me improve. I’m sorry to report that not only did the specialist not have any new ideas or ones that differed from my general neurologist, but she turned out to be a truly unkind person. By that I mean that from the first moment I met her, her basic social skills were sorely lacking, to the point of rudeness. (Example: when I first met her, I held my hand out to shake hers, and began to introduce myself. She held her hands up, palms facing me, saying, “I just washed my hands!” My gut told me this was weird, but I fought my instincts. I didn’t know this doctor yet, and we’d traveled quite a distance, incurring hotels, meals, gas, etc., and the last thing I wanted to do was go back home without getting seen.) That kind of thing can happen to anyone, but somehow, because MS is a chronic illness, and I made special arrangements to see a so-called expert, I was unprepared for the callous way that the “expert” treated me. It seems obvious in the abstract that not all doctors have a great “bedside manner,” but I confess I was really vulnerable and it hurt, probably more than not being offered something new to try.

Back to my local neurologist and my silent demand that I must be on something new. While I have not officially gotten a second opinion, I feel as though I have. I watched a YouTube presentation by two MS neurologists in another geographical area, and even though the words they used were very similar to what my doctor had said, it essentially was confirmation of what he had told me in February: those two treatments are new, and it remains to be seen if either or both have unanticipated, even serious side effects. I know they didn’t mean it in a disrespectful way, but they as much as said, “let others be the guinea pigs.” Worded more professionally, for people who continue to experience attacks while on another medication, one of these drugs might be a Godsend for them. But if attacks are not occurring, it’s much safer and wiser to remain on one of the drugs with a much longer safety profile.

I did not want to hear this, and yet, I needed to hear this. My husband didn’t say so, but I suspect he is relieved that I’m not pressing to hit the road again in search of a different answer. I’ve come to a proverbial fork in the road of navigating life with a chronic, sometimes cruel illness. The best thing for me to do is to continue on the therapy my doctor has prescribed.

People with MS are taking big risks to try to improve their functioning, and both Lemtrada and Ocrevus have the potential to be quite risky. The biggest buzz seems to be about HSCT (hematopoietic stem cell transplantation). This has not been approved by the FDA, although there are studies in progress. So far, the number of patients is small, and while it looks promising, I realized that I didn’t want to die in an attempt to get the procedure. I know of people who have gone to other countries to get this procedure, and have gone to great lengths to raise the money (in excess of $100,000) to do so. Not only am I unqualified to determine if protocols done anywhere are best practices, I’m also not fluent in any of the languages spoken where some are having HSCT.

Some of these people have died. Some advocates describe that a specific thing happened to this one or that one, and maybe those stories are true. And maybe they aren’t. I really did some soul-searching, and tried to imagine if I pushed to do this. I’m in a foreign country with my husband, when suddenly, I develop a complication. Things don’t improve, and I actually die. Well, then, my husband, having watched everything, has to contact everyone in our family and tell them. He has to get himself (and my body) back home, and deal with everything that happens when someone dies. I’m not trying to be dramatic, but I had to really imagine this. As much as I wish for an improved (maybe even cured!) condition, it seems cruel to put the people I care about most through the wringer. A less dramatic scenario could happen, too, wherein I didn’t noticeably improve, but we’ve spend a massive amount of money, not to mention the emotional capital draining away. And maybe I’d be one of the lucky ones, the folks who swear they’re like new.

Even as I write this, I wonder if I’m giving up too easily. Never stop fighting, right? The truth is that many people with MS profess to be willing to take gargantuan risks to get better. I counted myself among them. I’ve realized that I’m not such a badass, after all.

All of this has served as a kind of “spring cleaning” of my attitude. It’s surprisingly freeing to imagine not questing after another drug! Instead, I’m trying to focus on things that will bring me joy, as well as new “treatments” that I can control. I’m fortunate that we could afford to buy a Freedom Chair, and that allows me to ‘walk’ our neighborhood. I recently signed up for equine therapy and am looking forward to being outside on the back of a horse. Perhaps most telling of all, I found a book that has given me a lot of hope. I know I’ll still follow everything related to MS, I’ll research it and ask my doctor about it. Other people may push hard for something to get better, and maybe that’s fine for them. I’ve decided to focus on the here and now and the known.

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Jump Into Spring Cleaning – Then Nap

By Lauren Kovacs

“Spring cleaning” is more than scrubbing floors.  Yes, dusting and cleaning under the bed are both good starts. Cleaning how you do stuff is also important.  Methods to your madness will iron out life-wrinkles.

I admit spring cleaning is something I abandoned on the side of a dusty road, in the desert, years ago. Along with the OCD Cleaning Lady and the Floor Nazi Mom, I left them behind too.  Relax; I gave them a bottle of water.  They were replaced with the “Do What You Can Lady.”

With three boys, a husband, and a dog, I am drowning in major testosterone.  Physical spring cleaning is often a losing battle for me.  I take one task at a time, now.  I also make lists of what tasks need attention.  Cleaning toilets never makes that list.

Learn to work smarter.  Expel as little energy as possible, but be proud of the tasks you do complete.  One trick I use to move laundry is using a rolling plant stand.  I can no longer lift laundry baskets onto my walker and pushing it was scratching my wood floors, even with putting felt dots on the bottom.

When putting away laundry get help and put away winter clothes, as you uncover summer clothes, at the same time.  I put the youngest one’s clothes into a designated container to give away, as it comes through the wash. The older boys put their own clothes into large plastic tubs, with the size and season written on paper on top.  If one of the boys happens to eat miracle grow and suddenly needs a bigger size mid-season, it is clean and dresser ready.

It would be easier, if they were turtles and their clothes grew with them.  I am also wondering if being nudists would help.  I guess having weeds with big feet, in my house, is just life.  The dog grows out and does not need clothes, thankfully.  We just adjust his collar.

Once we switch over seasons, I make a list of what is needed.  They are boys.  Stuff gets stained, torn, or runs away with the socks.  Pinewood Derby paint does not wash out, by the way.  Blood on soccer uniforms responds well to hydrogen peroxide, before the wash.

Do what you can and what you are good at.  I am good at organization, making lists, and researching.  Cleaning the blinds, I am not good at, however.  Embrace your gifts.

Clean your methods too.  Make sure to know easier paths to get things done more efficiently.  Save energy the best way you can.  Even driving can be made more efficient.  Maybe have a route mapped in your head of how you shop.  Write down the map, if you have cognitive issues.

I like to spring clean with a small bag of M&Ms.  I reward myself with the completion of each task.  Reward yourself in some way when doing anything really.  You know the effort it requires.

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Wellness is a Big Puzzle

By Lauren Kovacs

Wellness is as broad as MS itself.  It is a never-ending struggle for some kind of wellness.  It haunts most of us like a persistent poltergeist.  Little pieces fit into the MS puzzle and you need them all.

We all try and latch onto any floating debris. We ask, “What if it helps?”  There it is, the dreaded, “What if?”  Always try it; it might work for you.  Turmeric is a decent life-ring for some, for example.

It is really hope we cling to, in the end, no matter how small. Routines and eating well are obvious pieces. Many of us find reducing gluten and sugar helps.  The jigsaw puzzle of MS wellness is huge.  Someone’s failed try might be someone else’s small victory.

One piece I have found to be golden is mental wellness.  We all need to vent.  I have a talk therapist.  I dump my MS garbage on her, poor dear.

A disinterested third party is great for me, mentally.  I am a talker.  I can talk your ear off.  With recent MS stuff, talking is work. Ok, I sound drunk.  My brain wants to release, but by the time the flow gets out it is a muddy mess.

Unloading on your spouse puts a big kink in your marriage. Talking to a friend helps, but it has to be the right friend. Talking to a family member might not work either.

Many people are not equipped to carry the burden of listening to our MS struggles.  So, we put on a happy face and move on.  Eventually our bag gets too heavy and explodes or leaks.

A trail of MS juice follows us, if we ignore it.  It drips from our backpack with every step.  Wellness calls for us to find a way to lighten our load or patch the leak.  The MS backpack is a permanent fixture.  We can never take it off.  Wellness of any kind is a welcomed Band-Aid.

Talking to someone helps me feel better.  I can trip over my own words or smear them as they come out.  I need the release at times.  Friends might hear complaining and family might get annoyed.

Wellness is a puzzle piece.  Trying to smash it into the wrong place won’t work, no matter how you turn the piece.  Mental wellness is personal, and very important.  You have to find the best way you can to slide that piece of the puzzle in.  A Cadbury Crème Egg helps too.

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Wellness Needs a Nap

By Lauren Kovacs

I can’t stress this enough.  Fatigue is a relentless beast. If we want to be as well as we can, sleeping helps.  From marathon naps to a wee kitty snooze, it is a must.  Some days more than one is needed.

Don’t resist the craving to sleep.  Cave in and watch the back of your eyelids. Mid-day naps work for me. Even my dog knows when it is my naptime.   In this sense resistance is not good.  Don’t fight sleep.

I sleep with the phone and I only answer it if it is my kids’ schools.  Most people, with two brain cells to rub together, know I am out of order during naptime.  I have “out of area” numbers blocked by my phone company and if something gets through, I turn it on and off to get it to stop ringing.

Blocking out light and sounds help me too. I have a hard time with glare and sleeping in sunglasses is uncomfortable.  I put something over my eyes. Eyelids are not enough and fabric blocks it out.

A few drops of lavender oil on my sheets can be relaxing.  I also have a hard time clearing my mind.  Boy Scouts, soccer, Taekwondo and many other scenes in life are doing the Tango in my brain all night.  I draw the curtain on that sleep-sucking dance by reading.  A few pages of fiction turn the pages of life.

Listen to your body.  It whispers wellness secrets.  If you are too hot, your body tells you.  If you need to sleep your body will tell you.  LISTEN.  If your body says it needs chocolate…  Listen to it!

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This is for the Weary Ones

By Penelope Conway

This is for the weary ones, the tired ones, and the “I can’t go on” ones.

This is for the ones who cry behind closed doors yet muster up a smile to face the day.

This is for the ones who dream of the day multiple sclerosis is cured so they no longer have to deal with doctor appointments, meds, needles, and pain.

This is for the ones who keep going, even when they know they need to stop for a moment to do nothing but chill on the couch with a good book or a marathon of their favorite show on TV.

This is for the ones who long to take a vacation where they are waited on hand and foot; no laundry, no dishes, no vacuuming, no work of any kind.

This is for the ones who get stressed and overwhelmed with the demands a life with multiple sclerosis brings.

This is for the ones who find it hard to keep going, who long for a break, who need time off, and who deal with too much.

This is for you.

You are an amazing, courageous, beautiful person. You are not alone. Take some time to do something just for you. That pile of laundry… let it pile up. It doesn’t matter. Take time for you. Treat yourself to a movie, a night out, a steak dinner, a trip through the park, or a giant slice of chocolate cheesecake. Shake off those negative thoughts that cause you to feel worse than MS could ever make you feel.

Stand outside your situation and, for just a moment, try looking in from the outside. Think about what you would say to someone else standing in your shoes. Would you remind them of their value? Would you tell them to worry less? Would you encourage them to ask for help so they aren’t doing everything alone? Would you show them how to smile through the tears?

You have a mountain in front of you… an Everest. That’s your reality. But no matter how big it may be, it can be climbed. Don’t look at its massive size. Choose instead to take your eyes off of the rock in front of you and look out at the beauty all around. Stop for just a moment and breathe. It takes courage, determination and strength… and you have each one.

So as you climb Mount Everest with your heart pounding in your chest and your knees buckling under you, give yourself one tiny moment to realize just how incredible you really are. You are worth it. You matter!

*Penelope Conway was diagnosed with Multiple Sclerosis in November 2011. She is the author and founder of Positive Living with MS (http://positivelivingwithms.com/) where she uses humor and her own life experiences with MS to help others navigate this unpredictable journey. She believes that staying positive and holding onto hope is the key to waking up each morning with the strength to get through the day.

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I Am Free in the Water

By Simone Sanders

I was an unusually tall child. I stood at almost five feet tall by the age of six. So, naturally, my family began to speculate about my future athletic potential. My grandfather, who was an avid swimmer, decided that my lanky, thin frame would best be suited for swimming. And so my lessons began at seven years old. I remember I felt two things the very first time that I jumped into the pool: cold and free.

On land, I was quite awkward. Being much taller than the other kids left me at the end of the line most of the time. My feet and hands were too big to swap shoes and winter gloves with the other girls in the class and adults always seemed to notice my height first. But the very features that made me awkward on land made me graceful in the water. My big feet helped me swim faster than the other kids. My hands helped me pull water behind my body more efficiently and my height made me superior in a race to the finish line. In the water, I was a winner.

Fast forward twenty years and I still feel like a winner when I swim. Living with multiple sclerosis on land is rough. I walk slowly. My hands and feet are numb and tingling. My vision is blurred from optic neuritis. I am tired all of the time and my brain is sometimes in a fog. But I am free in the water. I don’t have to drag my body because my limbs are light. My hands and feet are both cold so the numbness and tingling stops. My blurred vision doesn’t matter because there is nothing to see in front of me but the finish line. And if I am tired, I float. In the pool I am not disabled. When I am swimming, I am enough.

In a race against MS, I win.

 

*If you are interested in learning more about using your own passion for swimming to help the MS community, please visit SwimForMS.org.

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