The Eternal Optimist, or How to Walk a Cat on a Leash

Posted on May 30, 2014 by MSAA

By: Jeri Burtchell

I was just 11 when our family lived through a flood that filled our house with mud. When the water subsided we came home to survey the damage. Instead of lamenting over all we had lost, my dad laughed and pointed out that the cat box was still in perfect condition because it had floated all around the house. That was my first lesson in optimism.

His positive attitude was contagious and taught me to find the humor in things no matter how grim the situation.

But when I was diagnosed with MS in 1999 and then we lost my dad to cancer two years later, my eternal flame of optimism started to flicker.

It was hard dealing with the disease, but even harder to find the bright side when my heart was filled with sorrow. Eventually, my dark cloud lifted. I realized that even though I can’t change the fact that he was gone or undo my diagnosis, my happiness is a choice I can control. As Sheryl Jacobson Skutelsky wrote in a great article, “Gratitude equals a positive MS attitude.”

My need to see the bright side of every situation became my coping mechanism. Positive thinking has forced me to step outside my comfort zone to explore new things in life. If you let all of the “what-ifs” hold you back, you will live in darkness where the landslide into sorrow and pity are only one negative thought away.

So every day I try new things. And every day I try to find the humor in something. The two often combine as, (more often than I like to admit), humor winds up being the salve I put on some of my not-so-great ideas when I go trying new things.

Which came in handy when I thought I could walk a cat on a leash despite having never seen it done before.

Tweak is my oldest son’s Flame Point Siamese cat. One day he disappeared and was gone without a trace. Two weeks later he reappeared in my son’s back yard, having spent at least one of his nine lives while he was gone. Tweak was missing fur and skin from his hips to his tail. The vet said it looked like he’d gotten trapped in a fence and ripped his way out. He came home with me so I could nurse him back to health.

Tweak is the most loving, good-natured cat you’ll ever meet. He’d rather sit on your lap and purr than do anything else. Even in pain, he never displayed so much as a fang. He just purred, thankful to be alive.

But Tweak is a former indoor-outdoor cat, and despite his sunny disposition, after a few weeks of being cooped up inside, he started to get cabin fever.

I thought to myself that there must be some way to let Tweak get some sunshine and fresh air. As so often is the case with my “brilliant ideas,” if I listen hard, I can almost hear my dad laugh.

I got a harness made for extra small dogs because, for some reason, they don’t make them for cats. And I got a leash.

Tweak willingly let me strap the harness around him. But once outside, he stood frozen, not knowing what to make of his new surroundings.

You’re probably thinking he made a mad dash and escaped right away. You’re wrong.

No, I was proud that my idea was working as planned. Tweak let me lead him right down the walkway to the yard out front as if he’d been on a leash all his life. He rolled in the grass and soaked up the sun. He purred while I scratched him behind the ears.

We had a moment of pure Zen.

Then the neighbor started his car.

In an instant, Tweak began channeling Houdini. He flopped around at the end of his leash like a trout on a fishing line before one quick duck-tuck-and-back-up move gave him the freedom he craved.

He only got about ten yards closer to the house, when I walked right up to him and picked him up. He was purring, my heart was pounding. I was relieved I hadn’t let my son’s cat escape.

And even though it didn’t go as planned, I can look back and laugh.

My dad taught me lessons in finding humor, and now Tweak is teaching me about being happy no matter what my physical circumstances. The takeaway from both is that attitude is a choice, and I choose to be optimistic.

Even if I have to learn the hard way why you never see cats on leashes.

Resources:
http://contributors.healthline.com/voices/gratitude-positive-ms-attitude

*Jeri Burtchell was diagnosed with multiple sclerosis in 1999. She has spoken from a patient perspective at conferences around the country, addressing social media and the role it plays in designing clinical trials. Jeri is a MS blogger, patient activist, and freelance writer for the MS News Beat of Healthline.com. She lives in northeast Florida with her youngest son and elderly mother. When not writing or speaking, she enjoys crafting and photography.

Making the Best of a Bad Situation

Posted on May 28, 2014 by MSAA

By: Matt Cavallo

In terms of the heat, spring is quickly turning to summer in Arizona. Daily temperatures are already constantly in the nineties, creeping closer to triple digits every day. As a person living with multiple sclerosis, this is a problem. As the heat levels increase, so does my fatigue. Each day for me is becoming a battle of will and determination to accomplish simple, everyday tasks. My refuge from the heat is to hibernate in my cool, air-conditioned house.

Recently, I was at work and received a call from my wife that I wasn’t expecting. She told me that the central air-conditioner in the house went out. She went on to say that the AC repairman said the motor was dead and the entire unit needed to be replaced. The sticker shock of what a new AC unit costs was another blow, but with my MS, there was also no way I could afford not to replace the AC.

As I hung up the phone, I started to feel defeated and stressed. It always seems that just when I am starting to get ahead, I figure out a way to fall behind. As I reflected on the situation, I realized that it was out of my control. So what was I to do now? There are all kind of events in life that we don’t plan for, and this was a big one. I could let the worry, stress and financial considerations of the situation bring me down into a negative place, or I could look deep inside myself and somehow find the positive.

I decided that I was going to be positive. The AC was twenty years old, too small for the house and a real drain on our energy bill. We had talked about replacing it for years and this situation was forcing our hand. When I put it in my mind that getting a new AC was good for us, the negative circumstances started to change. We had a friend that could install the AC for a reasonable price. The vendor didn’t have the AC unit in stock that we purchased, so for the same price they gave us a bigger, more energy efficient unit. That unit then qualified for a $500 tax credit. The best moment, however, was the joy my four year old received as we watched the crane remove the old unit and then put the new unit on the roof. He was so excited to see the construction that it made me excited to share in that moment with him.

When life throws unexpected challenges at you, how do you handle them? You can choose to be negative or positive. I choose to make lemonade out of lemons and then pour myself a nice big glass.

*Matt Cavallo was diagnosed with multiple sclerosis in 2005. Matt is an MS blogger, author, patient advocate, and motivational speaker. Matt also has his Master’s degree in Public Health Administration. Matt is the proud father of his two sons, loving husband to his wife, Jocelyn, and best friend to his dog, Teddy. Originally from the Boston suburbs, Matt currently resides in Arizona with his family. To learn more about Matt, please visit him at : http://mattcavallo.com/blog/

Music and MS – Songs That Best Describe MS

Posted on May 23, 2014 by MultipleSclerosis.net

Music can have a profound impact on our feelings and emotions. When a good song comes on the radio, we often find ourselves happily singing along to our favorite tune. One of the main reasons we enjoy music so much is that we can truly identify with certain song lyrics, and moreover, it is comforting to know that someone else may feel the same way that we do. Because MS has such a strong presence in the daily life of those with the disease, people with MS often find themselves equating their experiences with those of others, through music. We asked the MultipleSclerosis.Net community to share with us the names of songs that best describe their MS, and we’ve highlighted the top five responses we received.

5. “Stronger (What Doesn’t Kill You)” – Kelly Clarkson
Many people feel that having MS has made them stronger, overall. Kelly Clarkson’s song is truly empowering, as the chorus states “What doesn’t kill you makes you stronger, stand a little taller, doesn’t mean I’m lonely when I’m alone…” Another verse of the song that really resonates with the MS community declares “you think you got the best of me, think you’ve had the last laugh, bet you think that everything good is gone, think you left me broken down, think that I’d come running back, baby you don’t know me, cause you’re dead wrong.” The positive, upbeat nature of this song makes it a great one to belt out in the car, no matter how good (or bad) your singing voice is.

4. “Comfortably Numb” – Pink Floyd
While we like to identify with upbeat, empowering songs, sometimes we take solace in knowing that someone else is struggling the same way we are. Pink Floyd’s “Comfortably Numb” is one such song, and in this case, the song title says it all. Many people with MS experience physical numbness, but this feeling of numbness is also metaphorical. Being diagnosed with MS can be overwhelming, and sometimes people with MS just feel completely “comfortably” numb.

3. There was a 3-way tie for the third most popular song: “One Day at a Time” – original lyrics by Marijohn Wilkin and Kris Kristofferson, “I Will Survive” – Gloria Gayner, and “Monster” – Eminem featuring Rihanna. As with many battles people face in life, coping with MS is often accomplished one day at a time. “I Will Survive” may be about getting over a relationship, but over the years Gaynor’s trademark song has taken on so much more meaning for anyone struggling a battle of his or her own. The chorus of the most recent of these 3 songs, “Monster”, proclaims “I’m friends with the monster, that’s under my bed, get along with the voices inside of my head, you’re trying to save me, stop holding your breath, and you think I’m crazy, yeah, you think I’m crazy”. Some people consider MS to be a MonSter, and singing along to this tune may be just what you need to deal with the beast that is MS to get through your day.

2. It’s a true challenge not to sing along when Katy Perry belts out the lyrics to her hit, “Roar.” The chorus can motivate anyone to fight whatever battle it is that they are fighting: “I got the eye of the tiger, a fighter, dancing through the fire, ’cause I am a champion and you’re gonna hear me roar.” Tied with Perry’s “Roar” was “I Get Knocked Down (But I Get up Again) (Tubthumping)” by Chumbawamba. This song, released in 1997, embodies the idea that MS may try to knock us down, but we will get up again, and again, and again.

1. And finally, the song with the most votes was “I’m Still Standing” – Elton John. This song is a true classic that resonates with anyone going through trying times: “Don’t you know I’m still standing better than I ever did, looking like a true survivor, feeling like a little kid, I’m still standing after all this time, picking up the pieces of my life without you on my mind.”

Wondering about the other songs that were named? You can view the full list here.

What song best describes your experience with MS?

Swim Cap Giveaway – Sign Up to Swim for MS

Posted on May 21, 2014 by MSAA

Temperatures are rising across many parts of the country, and people with and without MS will soon be looking for a way to keep cool or have fun in the summer sun. Therefore, now may be the perfect opportunity to start learning more about MSAA’s Swim for MS initiative.

Swim for MS is a national fundraiser in which volunteers are encouraged to create their own swim challenge while recruiting online donations to support the Multiple Sclerosis Association of America (MSAA) and the MS community. Swim for MS is unique because MSAA does not plan the event – you do! Your fundraiser can be as unique as you want it to be.

Your own Swim for MS fundraiser can take many different forms. Many individuals participate in ongoing Swim for MS fundraisers as well as in one-day events. Some choose to swim outdoors, while others love the convenience of an indoor pool. In addition, many Swim for MS fundraisers involve teams filled with passionate swimmers who all have one goal in mind – improving lives for the MS community. You can see several examples of such fundraisers by visiting SwimForMS.org.

MSAA is also pleased to announce that we are giving away Swim for MS swim caps to every participant who registers for Swim for MS in May! Sign up within the next ten days to receive your official Swim for MS welcome kit, as well as our new Swim for MS swim cap! In addition to the swim cap in May, we have added one more surprise Swim for MS item to registration boxes this month. You’ll just have to register to find out what it is!

Besides the Swim for MS fundraising component, Swim for MS also features an online Aquatic Center, which contains resources for people living with MS who wish to learn more about how aquatic exercise can benefit them. For individuals who may have difficulty with traditional land-based activities, the unique properties of water combined with its cool temperature can create an inviting and sometimes ideal exercise environment for people with MS. Visit the online Aquatic Center to learn more.

Who’s in your circle?

Posted on May 19, 2014 by Angel Blair

After attending a retreat this week for helping professionals, there were a lot of things put into perspective for me. One being that we all need to make time for is self-care in our routines, to maintain a balance between things we must do and things we should be doing for ourselves on a daily basis. But another poignant moment at the retreat posed the question: “Who do you want to bring into your circle?” The circle symbolizes your safe space, the area you’re surrounded by that accompanies you through your day to day. It represents your thoughts and hopes and also your vulnerabilities. So the question that was posed of whom you’d want to enter this space with you or who you’ve already accepted into this space was profound. It’s not often that we are able to take the time to consciously think of those we’re surrounded by and why it is we’ve chosen them to be a part of our lives. Being able to reflect on this was moving.

We go through life at times with certain blinders on. We rush through daily activities and sometimes forget that we’re part of a bigger world, full of other people experiencing similar types of thoughts and feelings, though each unique and different in their own way. Our circles intersect with others, and though we may not realize it, some of us have already chosen whom or what we’d like as part of our circle. They are the family and friends we surround ourselves with, those we let in when we need to connect and feel validated. They are the places we like to visit, the things we enjoy doing most. It can really be anything or anyone; it’s up to you who enters the circle, because after all, it is yours.

Who’s in your circle?

How do we know if we are doing a good job?

Posted on May 16, 2014 by MSAA

by Kimberly Goodrich, CFRE, Senior Director of Development*

As the debate continues around ratings, ratios, and watchdogs, nonprofits around the country are focused on how to accurately communicate their value. If ratings do not suitably portray the efficiency of an organization’s operations – then how do we know our dollars are being well spent? What is our impact?

Impact, in the nonprofit world, refers to the change in behavior that is a result of the activities and resources provided. For example, an organization provides a class and information on the health risks associated with smoking cigarettes, and finds that 42 percent of attendees stop smoking, resulting in higher scores on overall health measures at their next checkup. If their mission was to improve health scores by decreasing the number of smokers, then this organization can clearly state this as their impact.

MSAA’s mission is to be a leading resource for the MS community and improve lives today. But how do we measure improvement? And how much improvement is enough? In the previous example, if the smoking-cessation classes improved health scores by 50 percent, this sounds great, but what if they only improved by 5 percent…is that enough? If 5 percent kept that person from having a heart attack, would it then be enough?

The improvement of a life is not easily shown on a graph or a financial statement. Sometimes we need to hear the stories that accompany the percentages and the ratios, the revenues, and expenses. The stories that remind us why we do what we do.

“From the bottom of my heart, I thank you – all of you, for helping me to live independently [through MSAA’s free equipment distribution program]. I put my shoes on by myself!! It has been years since I have done that! Thank you for the leg lifter. It lifted my spirits too!” -F from South Carolina

This is not to say that numbers do not matter. Last year, 1,040,554 people accessed our website for information – 814,776 of them for the first time. That’s a significant number of people who can have their spirits lifted and their lives improved.

MSAA has been able to improve these lives because of an increase in the number of generous donors who support us in this mission. We are incredibly thankful for this growing number of people who, through their vital contributions, experience the joy of creating an impact – and improving lives today!

*About Kimberly

I am the Senior Director of Development at MSAA and have worked in the nonprofit arena for over 15 years. I love reading, running, theatre and the Green Bay Packers. I volunteer with the Disabled American Veterans teaching outdoor sports like skiing and kayaking to injured veterans and find that I receive much more from them than I am able to give.

Doing What Makes YOU Feel Good When You Have MS

Posted on May 14, 2014 by Samantha Schech

Multiple sclerosis in itself is a complicated and often unpredictable disease. We here at MSAA hear on a daily basis about some of the trials and tribulations that our clients with MS face. One of the most valuable lessons that I have learned in trying to understand the whirlwind of information provided about MS is to find something that is meaningful to you and to your unique situation. With all of the information available, finding something that will make YOU feel good is a priority.

Through social media, websites, and support groups, information is provided about a number of hints, tips, or things that one person may have done to alleviate their symptom, which is wonderful, but unfortunately may not work for everyone. Not every individual with MS will experience the same symptoms and even for those who may, those symptoms may appear incredibly differently.

The point behind the story and the reason for the title is that everyone has their own needs, and each person understands and knows their body better than anyone else. These experiences and feelings are unique to you and should be treated independently to others’ beliefs and thoughts. Focusing and developing ways that make YOU feel good may help to improve your overall day to day.

Explore yourself; perhaps through journaling you can identify some needs that could be met in order to make you feel good. Guided meditation is another way to explore your inner thoughts and feelings. Sitting in a quiet space with yourself and learning about your body and the way that it feels at any point throughout the day can help to center you and focus on what your body needs.

What can you do for yourself today that will make YOU feel good?

You Can Contribute to Finding the Cure for Multiple Sclerosis:

Posted on May 12, 2014 by MSAA

If you are looking for a way to get involved or change the future of MS research, the Accelerated Cure Project and NARCOMS (North American Research Committee on Multiple Sclerosis) are great places to get started!

I want to bring attention to these two organizations, which you may not be familiar with and encourage you to look into their websites if you are interested in learning more about what they do.

The Accelerated Cure Project maintains an MS-research repository and also will be launching an online patient powered research effort. They focus on making sure researchers have access to the biospecimens (for example blood, or CSF fluid) they need to conduct research, and then aggregate the results of all of the studies performed using these research samples.The sharing of research information and results helps to expedite the MS research process.

NARCOMS is a voluntary MS registry with over 37,000 registrants currently. They support the increase in collective knowledge of the MS experience through surveys and other activities in hopes that the collective knowledge gained about the MS experience will be helpful to researchers and will also promote a greater understanding of MS.

What makes you smile?

Posted on May 9, 2014 by Angel Blair

Have you ever noticed that smiling can be contagious? That it’s hard not to smile or laugh when someone around you is? I’m not saying that life is always known to be a smile fest, as there sure are obstacles and challenges that the road of life brings, but smiling and seeing or experiencing joy can definitely raise one’s spirits. In a world that becomes hectic and chaotic in the day to day, some smiles can go unnoticed; people still smile at one another at a grocery store, or while holding the door for someone, don’t they? It’s hard to tell sometimes, because most people are rushing through their day just to get everything accomplished, and kindness and joy sometimes go unobserved.

What would happen if you slowed down long enough to take a look around you – to notice people smiling and acting kind to one another? Even though there can be dark moments in the world, there are still some who wish to radiate joy and hope to spread it to others, especially during difficult times. So try it! Try noticing others around you, those expressing joy and smiling from ear to ear at something that brings them happiness, and think to yourself – what brings me joy? And practice embracing that joy, in your day to day…

So what makes you smile?

Which half do you see?

Posted on May 7, 2014 by MSAA

Optimism – the typical description is if you see the glass half full, you are an optimist and if you see the glass half empty, you are a pessimist. It can be very empowering and reassuring to view the glass as half full. In most situations, having a positive outlook can help to impact the situation in a beneficial way.

To get more theoretical though, sometimes it may be helpful to remember it is just a glass with water and analyzing our perceptions and personal filters can help determine how they impact our outlook on life. In other words, the facts are the facts and the way we perceive a situation and our resulting emotions are usually based on personal filters of what we believe is good/bad, moral/immoral, happy/sad, etc.

Take for example when you meet a new boyfriend, people may say that you look at him “with rose-colored glasses,” meaning you cannot yet see or choose to ignore his apparent faults because you are so newly engaged in the love feeling that you are ready to brush those other concerns aside. At the end of the day, when your rose-colored filter is removed, you may be willing to deal with the shortcomings or challenges involved with that relationship, or you may be ready to hit the road running in a different direction.

In that scenario, if a person was able to view the actual situation and set aside their personal filter, they might know earlier on in the relationship that their partner is not a good match. Conversely, they might set aside someone they deem too difficult or different when if they had used a rose-colored filter, they may have given the relationship a chance and later found out that their difference could be compromised or overcome.

So back to the glass of water…ultimately, your mind may jump to one assessment or another (half-full/half-empty). While there may be benefits of viewing things one way or detriments to viewing it in another way, sometimes, especially in challenging situations, being more analytic and viewing the glass as a glass may help you to ascertain what personal filters or perceptions may be coloring your thoughts, emotions, and actions. When the glass always looks half-empty, it may be a good reminder to keep analyzing the glass and your own perceptions.

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