Tana Campbell’s Race of Hope – Part 2

Written by Mark Campbell, Tana’s son

Read Part 1 of Tana Campbell’s Race of Hope

On June 1, 2013, we lined up in the back of the running pack surrounded by family and friends. We all wore the same shirts. There were 13 of us (five running and eight cheerleading), all wearing a bright orange shirt with a while ribbon on the chest surrounded by the phrase, “Fight On and Find the Cure! Multiple Sclerosis!” Prominently displayed on the back of the shirt was the MSAA logo along with some other local sponsors. We were ready, nervous and excited. We saw glances from other runners and spectators. But they weren’t puzzled or condescending looks. They were looks of astonishment and admiration. This was our first hint of just the type of day we were destined to have.

The race started and we were the last of over 750 runners to cross the starting line. Spectators were lined up on both sides of the runner’s chute. We heard their clapping and cheering once they recognized what we were doing. We crested the top of a small hill, turned a corner and were out of the sight of our family and friends. We would see them a couple more times during the race as they drove to a strategic location where we would pass at 3.5 miles and again at 7.5 miles.

Over the course of the next three hours we ran mostly on the Capital Area Greenway which follows a creek. It’s a well maintained and beautiful place to be. It never occurred to me just how much my mother would enjoy being on the Greenway. She never knew it existed and with limited mobility (she told me afterward) she never would have considered the option of experiencing it. The Greenway winds along a secluded area away from the traffic and noise of the city. There are interesting sights, numerous footbridges to negotiate and gorgeous scenery along the way. It is also a heavily wooded area that created a canvas of shade and allowed mom to keep cool throughout the race.

As we encountered the water stops along the route we heard more cheers and kind words from the volunteers handing out water and electrolyte drinks. Our route was an out-and-back course, which meant that runners who were in front of us at the start of the race were now coming back toward us. Most of the runners had no idea that we were even participating in the race because they never saw us at the starting line. I cannot count the number of times these runners clapped, cheered, smiled, yelled, waved, pumped their fists, gave us high fives, etc. It seemed like everyone who saw us wanted to acknowledge our participation. I can only imagine what my mother goes through in her mind when she gets out of the house and other people see her at the store or doctor’s office or in a restaurant. But this day, my mother was a rock star! And everyone wanted to salute her.

As we crested the final hill and made the final turn, there was such a sense of accomplishment for both of us. Mine was a physical accomplishment. Yeah, I ran a half marathon while pushing my mother in a wheelchair. But more importantly to me, my mother’s accomplishment was mental. She showed herself and others that she can enjoy life and overcome challenges. After the race was over and we were hanging out with our friends and family at the finish line, I remembered what a friend of mine who also has MS once told me. She reminds herself daily that she has MS, but MS doesn’t have her. The same is true for my mother….MS doesn’t have her.

If this is the only time we ever participate in a race together then I am very happy and will cherish this memory forever. But something tells me that this won’t be the last time. If my mom wants to do it again next weekend I will be there for her….we may be just a little slower though and I’m sure that is alright for both of us.

(FULL DISCLOSURE ALERT:  I did have to ask for help on that final hill from our running support team. It was a long, steep hill and my legs were exhausted. We estimate that they took turns pushing mom in her chair for about a half mile during the race.)

Read Part 3 of Tana Campbell’s Race of Hope

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Tana Campbell’s Race of Hope – Part 1

Written By Mark Campbell, Tana’s Son

424637_394864773961277_1025041170_nI was nervous…extremely nervous. I wanted to offer my mother an experience that she never had. Personally, I enjoy running; particularly, I enjoy running long distances. And I wanted to run a long distance with my mother. But how do you ask someone who suffers from multiple sclerosis (MS) to run a half marathon when they have trouble walking from the car to the grocery store? How do you convince someone with MS to believe that they can run in a race when they can’t stand unaided for more than a couple of minutes?  Eventually, I got up the nerve to ask my mother if she would let me push her in a wheelchair while I ran a half marathon (13.1 miles). At this moment, more than any other moment in the entire timeline of events, I was the most nervous. I was scared that my mother would laugh at me. Or maybe she would roll her eyes and say, “That’s a stupid idea!” or “We can’t do that.”  Imagine my surprise when, without hesitation, my mother said, “Yes, let’s do it!”

This is not the first time that my mother has shocked me. Throughout my whole life she made me proud, amazed and inspired. But this was an enormous challenge for her. There were so many questions: Can she tolerate the ride? Can she tolerate the length of time? Can she tolerate the weather conditions? Will she enjoy herself? Will she regret doing this? Will her painful leg spasms return from the jostling of running?  I had to remind myself that this is my mother and she has shown me time and time again that no matter the test she would prevail.

We targeted a half marathon that was local (Raleigh, NC) for us. I sent an email to the race director asking him if he would allow us to participate. He welcomed us with open arms and asked if there was anything he could do to help.  This was a tremendous weight off my mind as I envisioned some lawyer-speak about, “blah, blah, liability, blah, blah, insurance regulations, blah, blah, doctor’s note.” I wouldn’t have blamed him if he turned us away….well maybe I would blame him a little bit. Fortunately, we no longer had to worry about that. Now we had roughly three months to plan and organize our experience.

The first order of business was to pick a charity. The decision was made immediately. Mom chose the Multiple Sclerosis Association of America (MSAA). She said they have been so good to her, and the thought of giving back to them gave her a great sense of worth. We contacted MSAA and with their help created a donation page.

Then we blitzed our family, friends and business contacts for donations to MSAA in mom’s honor. Without a doubt, our best source of fundraising was through Facebook. Within a couple of days of promoting our event on Facebook, we received $3,000 in donations. People were so excited for us and they showed that with not only their donations but also their words of encouragement. We eventually were able to raise over $4,500 for MSAA, and that is our greatest accomplishment through this whole process. We even had three running friends ask to join us during the race. Mom and I just could not believe how this event was moving people, many of whom we didn’t really know.

The last thing was to figure out how to make Mom as comfortable as possible during the run. We are fortunate enough to know the owner of a local medical supply store. He loaned us the use of a great wheelchair that had more padding than a standard chair, could recline to numerous positions and had a single handlebar for pushing. It was the perfect chair for both of us. The planning was done. The only thing left was waiting for race day.

Read on for Part 2 of Tana Campbell’s Race of Hope…

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Lesson from a Mom with MS: You’re Stronger Than You Think

By Hannah Cusworh
2013 Swim for MS Participant

You’ve heard of all the banal platitudes like “Never take ‘no’ for an answer,” “If you fall off the horse, get right back up,” and ”When there’s a will, there’s a way” – I’m almost certain my mother coined all of those phrases.

My mother was diagnosed with multiple sclerosis (MS) at a young age when she started losing vision in one of her eyes. Fortunately that symptom subsided and she continued living her life as she intended. Four kids and a few decades later, the disease awoke again with a force to be reckoned with. Our warm summer beach vacations were moved to cool mountain ranges in order to minimize her exhaustion. Our Sunday afternoon bike trails shortened. Our floor-level card games moved to higher ground. Afternoon rests became a daily routine. Our everyday Mom activities had changed forever. At least that’s how I saw it.

My mother, on the other hand, never let that be the case. She never sought out pity from others, she never asked for help. Anything we did before, she’d find the strength to do it in her own new way. She wasn’t going to take “no” for an answer, she got back up on her horse, and she found a way. Yes, her everyday mobility has shifted towards a slightly different way of living, but life hasn’t changed.

While many cases of MS can be much more debilitating than the one my mother battles, I encourage those suffering from this life-changing disease to maintain the strength my mother has shown me. In honor of her continuing battle and as a tribute to her perseverance, this April I took on a personal “Swim for MS” challenge to swim 500 laps and raise $1,000 in 30 days. Sound hard? Not when you have this kind of inspiration.

Read more about Hannah’s Swim for MS on her webpage today!

 

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News from MSAA’s South-Central Region

Howdy!  For the past 6 years, I have been the South-Central Regional Director, and most recently I have taken on the duties of also serving our clients in the Northwest Region.  During this time I organized many patient, physician and healthcare provider education programs, where we focus on providing the most informative, educational and enjoyable programs possible. I have met the most dedicated neurologists and nurses in my region, and have been privileged to become acquainted with many MS patients and family members. They have allowed me into their lives, and I am always very happy to catch up with them when I have an event close by.

Some of my favorite programs are those aimed specifically for women with MS.  We have had several “Women’s Retreats” in my region, and each one has been very special. The format is simple: Provide a weekend of education, relaxation, friendship and fun. These weekends are focused on how to juggle the many hats women wear on a daily basis: mother, wife, employee, chauffeur, cook, housekeeper and MS patient.  Everyone feels the stress to be superwoman, and these weekends provide a respite, as well as some tools to help keep it all manageable.

At another recent program we focused on “Movement and Music” and everyone was shown simple ways to keep moving by using music throughout the day.  Instead of focusing on the “E” word (exercise), we simply learned fast, simple ways to incorporate stretching and strength training in everyday activities.  We learned how to use the beat to any song we heard to help keep us limber and stronger, thus keeping drop foot or spasticity at bay.

If you are interested in upcoming programs in your area check out MSAA’s calendar of events, which lists educational programs all across the country. If there is a specific topic you would like to see added to our education programs, please let us know.  We would love to include it!

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Anna’s Adventures at SXSW, Part 2

Hello to my friends at MSAA from South-By-Southwest (SXSW)! This is the second installment of Anna’s Adventures! If you missed part one, you can read it here. Now onto part two….

SXSW is over, another mission accomplished in the Wild, Wild, Southwest. From sweaty dust storms at the FADER Fort to getting lost on the back roads of Willie Nelson’s ranch at 2 AM, there are many more stories to tell. Late-night taco truck dining accompanied by a crescent-moon-lit impromptu band showcase on the side of the road and a four-encore small-bar Prince concert at La Zona Rosa in Austin’s downtown. I’ll say it again this year like I did last, SXSW is not real-life. A year’s worth of events can happen all in one day, or it at least seems as such. There is no time to sleep, or watch one band’s showcase its entire way through. Forever young we become, on sensory overload.

While the festival is generally grueling – it, for some reason, always seems to be worth it.

One of the main reasons for continuing to come to SXSW – for me – is the Heartbreaker Banquet. This year’s Banquet fell on the most gorgeous, sun-drenched, temperate afternoon, and lasted through the most glowing, sapphire breezy-skied, chandeliers in the trees, evening.  The Heartbreaker Banquet took place at Willie Nelson’s ranch and it proved to be the oasis and breath of fresh-air festival goers needed to continue on back into the rest of the week of SXSW.  The Banquet provided a venue for watching favorite bands and ones that would become new favorites perform inside Willie’s chapel, in his saloon, and out in the wide-open – in front of his World Headquarters. There was nowhere to go, nowhere to run off to, and we were thankful for it.

For me, I had paradise spilling out in front of me everywhere I turned, a photo creating itself everywhere I looked. I didn’t have to work nearly as hard as I’d dreamed of; everyone was at ease. As the sun set over the expanse of the crowd, it was calming and heartwarming to see that our festival had exactly doubled in-size from last year, and so many of my friends were there, performing on our stage. It was a reunion fantastic in-size and in-depth. And, all those who decided to miss it or left early to go watch the Spurs game on TV, really felt like they’d missed something special. They just didn’t know where to find it.

As crazy as the week was, I think about that day and it calms me. What’s the calm without the chaos, what’s the silence without the song, but thinking about it now, I can’t wait to open my eyes and see it all right there in front of me, next year.

Here are a few photos I would like to share

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Katie’s Story

When you lose something you love, the idea of time always becomes your excuse. It’s always I’m not ready yet or I’ll get to that another day or I’ll see you some other time. Family members become people you only see at weddings and funerals and lunch with the girl friends pushed back month after month. Forget about that gym membership, it’s a faded memory. You start to convince yourself that if you can just buy yourself more time, somehow what you’re feeling will get better on its own. I think my mom felt much the same way when she found out she had multiple sclerosis (MS). If only she could deal with it another day, maybe it wouldn’t be so bad. I’m not sure when the day was that she finally decided to face her illness. Maybe it was the day she was fitted for her cane, or her crutches or finally her wheelchair. Maybe it never happened at all. For me it happened two years ago today, the day she passed away.

My mom, Jean, was a florist before MS. Her love of flowers is one of the many attributes I adopted from her. We had a massive lilac tree in the back yard and a line of forsythia bushes in the front that seemed to make a bright yellow barricade from the street. There were rose bushes outside the back door and peonies outside the front. In the spring, the catalpa trees would blossom and cover the ground in these tiny white flowers, as if it were snowing. We had a cat that used to eat the supposedly poisonous poinsettia plants in the winter; she lived 18 years. Flowers have become one of the many ways I remember my mom. Twice a year, I have another one tattooed on my arm. While I realize that at some point I will run out of space and/or drive my father insane, I think the finality of knowing that these flowers will always be with me is something special. They defy time.

Reflecting on the past two years, and how I’ve come to work with the MSAA and be involved in the fight against multiple sclerosis is not an easy task. Then again, believing in a cause is not easy either. The biggest part of this entire journey has been the support from my friends and complete strangers. It has been the people I met whose lives inspired me to be better. It was Anna, the woman my age traveling the country snapping photographs of people in the most beautiful way while she monitors her symptoms using the My MS Manager app for her iPhone. It was Joe, who reached out to me through a friend to tell me about his own mom and her unbelievable struggle. It was Amanda and Neal, who continue to support me with their confidence and their dedication to the MSAA where they work. It was Shawn, who hiked 814 miles to tell the world that she wasn’t going to let her MS bring her down. These people deserve a standing ovation in my heart. I applaud them and I thank them for being a part of my life.

I’m not even close to done yet. I’m starting the planning for another Move On, MS event as I write these words. That will happen and it will be great. I do think it’s important to take time and reflect, to be sad when you need to be, or to take a break. It’s hard to describe the impact that losing my mom to MS has made on my life over the past two years. It made me broken. It made me sad, angry and alone. Then it made me strong. It made me open up, talk to people, make new friends, be unafraid. It made me stop putting things off, make plans to see family, take the afternoon off to have bloody mary’s with my friends. It made me dedicated, wiser and calmer. It has given me a purpose. It has made me a proud Ambassador to the Multiple Sclerosis Association of America. A place in which I think I would like to stay.

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Anna’s Adventures at SXSW, Part 1

Hi Y’All from Austin, Texas!

Hello to my friends at MSAA from South-By-Southwest (SXSW)! SXSW, is a 10-day music, interactive and film conference jam-packed with movie premieres, awards, panels, tech conferences, “tweetups”, concerts, parties and more! This is my SIXTH year at SXSW and there’s sure a lot in-store for me and my photography team as we embark on yet another musical journey during a very volatile, chaotic, and increasingly popular festival!

This year my agenda includes participating in a party hosted at Willie Nelson’s ranch (Luck, Texas) called the Heartbreaker Banquet. This is the second year I am participating in the Heartbreaker Banquet, I was part of the first-ever Heartbreaker Banquet last year at SXSW. The idea for this party came from a friend of mine, who worked tirelessly to secure the sponsors and Willie Nelson’s ranch!  For those of you who do not know Luck, Texas is the original set for the Red Headed Stranger movie and currently serves as Willie Nelson’s world headquarters. Last year, I did portraits in the jailhouse on the ranch; this year I’ve rented a 1963 retro Airstream trailer where I will be taking band portraits of the performers at the Heartbreaker Banquet. I am happy to announce this year’s Heartbreaker Banquet  has doubled in size, going from eight bands playing on two stages to 16 bands and THREE stages!

I will also be putting up a music photography gallery of my work and the work of another wonderful photographer friend of mine, Courtney Chavanell. The public will be able to view and purchase all of our portraits in Willie’s General Store on the ranch.

I am looking forward to sharing photos and stories from the Heartbreaker Banquet, so stay tuned! (Or follow the story on Twitter or Instagram!)

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Staying Active with MS

My exercising pursuits probably started at age one and a half when my foiled gymnastics routine failed to propel me out of the crib. Already I showed signs of being active and rambunctious and my “antics” did not stop despite stitches from my failed attempt. At age six my mother watched in horror as someone pointed to a young girl, her daughter, about to jump from the high diving board. Finally, at age eight she enrolled me in PAL (Police Athletic League), in an effort to allow me to channel my excess energy constructively.

I continued an active life style throughout my life, until I was diagnosed with MS.

In August of 2009 I was training for my first half marathon when I was diagnosed with RRMS. The diagnosis came as a shock to me because I was not only fit but maintained a healthy lifestyle.  The news, was a shock to me and I wasn’t sure how to cope.

After the diagnosis I shut everyone and everything from my life, including running and working out. I could not envision going for a run and collapsing from an MS episode. I truly had no idea what to expect but I had anticipated the worst of what could happen.  I couldn’t go to the gym and have my ego remind me of what I could no longer do.

As I struggled with the disease I became increasingly depressed. In the past, running would always assuage any crisis I had to face; I no longer had that outlet to release my depression and frustrations.  It was a catch 22 – if I went out for a run I could collapse (in my mind) and if I didn’t I would sink further into an abyss that I had created.

It took months for me to realize that I had hit a wall built not out of mortar but fear and indecision. MS had already proven to me that I would not have the same life that I had enjoyed in the past. So, why could I think that I could easily go back to my “old” form of exercising?   Reluctantly I had to give up starting off at the high diving board and had to wade into the kiddy pool instead.

And so as my frame of mind changed so did my temperament and condition. I started jogging slowly, almost at a walk, and much less distance than I was accustomed to. I had no delusions of grandeur, only of building up my courage and stamina at whatever pace I could manage at the time.

I also changed to a gym that had a pool.  Swimming was an activity that I had not done since I was a kid.  I wasn’t strong but I just wanted to get into the pool and swim a few laps at a time. The warmth of the water me gave me the impetus to stay in longer and achieve a little more each time. There was a familiar and safe emotional sensation that would flood my senses as the memories that I had as a kid, swimming in Puerto Rico and the JCC (Jewish Community Center), would come to the surface.

My legs finally started getting stronger and my attitude shifted to one of jubilance. I became more positive about the future and my life with MS. I realized how much I missed exercising. It had always been such an important part of my life. But more so, the endorphins that were released while I worked out had a positive impact on how I felt.

I also realized that it didn’t take much for me to fulfill the joy that exercising once brought me. It was as simple as exercising with light weights, going for a walk, or aerobic swimming.

I didn’t have to try to set out to break any type of record. I needed to listen to my body when it was telling me that it was as important to exercise my body muscles as it was the brain muscles. If I didn’t use them they would atrophy, as they were already doing. And, when my body was tired I needed to heed and do less.

My “baby step” routine continued until I was finally able to run my first half marathon last year and four months later completed an 817 mile hike through the Arizona Trail.

We all have different compositional make ups. Our MS symptoms are different and so we need to tailor our activities according to our capabilities. Any form of exercise, at our own pace, is instrumental to our physical and emotional and well being.

Please note: If you are looking to start any new exercise routine you should first consult with your physician.

 

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My MS Manager

A friend of mine has a little conversational quip whenever we’re stumped; when we don’t know who won yesterday’s football game, what the name was of that guy in the movie we just saw, or where the best place is to grab coffee in Midtown, he’ll say: “If only we had some sort of device that acts like a computer, small enough to fit in our pockets, with advanced search technologies. Wouldn’t that be neat?”

In a world where we have grown accustomed to having quite literally everything at our fingertips, the last and probably most important area that has been lacking is health and medicine. Sure, we have diet and exercise apps, calorie counters and WebMD. But what if we were able to have an app exclusively dedicated to helping manage a condition, disease, doctor’s info, and health records? An app that presents you with current up-to-date news topics and innovations in that field, hospitals, gyms, and local resources plotted out on your smartphone’s GPS exactly where you are, a place to journal and store all your results, symptoms logs and flare-up entries, in order to have more meaningful, detailed visits with your doctor… what a dream that would be.

That app for MS has been realized with My MS Manager, thanks to Ringful Health and MSAA. The first version for the iPhone is already in-use. And now — the app is available to many more people on Android.

I was floored when MSAA told me about the app in our first meeting.  It’s genius!

For me, the app has changed how I live my life with MS. It means that I can live my life with MS.

As an active photographer, often traveling, my routine can so easily get lost in the shuffle. “What day is it?,” I’m often asking myself. Time-changes and inconsistency with sleep and diet can really throw anyone off, especially someone trying to manage multiple sclerosis.

Now that I have the app, I never skip a beat!

Medication is on-time and never forgotten. Catching up on MS advancements, news, and events in my city or globally while I’m sitting waiting for a train, bus or plane is easy. Finding a doctor, hospital, gym, or health food store or restaurant in a new city is as easy as it would be at home. My doctor’s visits are maximized and efficient, leaving us extra time to spend talking about things like how his kids are doing, or what he thinks about a new MS drug or diet approach.

The peace-of-mind that comes with carrying all my relevant MS information with me in my pocket, should I need it in an event or emergency, or just want to find a healthy place to eat while I’m traveling, helps me to free my mind, take a break from MS, and go about my day.

To download My MS Manager for your smartphone please visit www.mymsaa.org/mobile

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MS as a Blessing

What began happening to my life and the way I saw it as a result didn’t surprise me as much as it did inspire me. MS, after all, has helped shape my life and career.

I began looking at everything I did a little bit more carefully. Apart from staying on-track with medication, I began waking up earlier, working out more, going to yoga and swimming, learning new things all the time, reading the news and more books and eating healthier. I went to more museums, parties, social gatherings. I started writing for fun and sometimes getting published. I started taking chances, asking for help, and hearing yes. I was fueled by hope, and by gain, ad hominem, and really didn’t fear losing anything. And that’s how I am right now.

In a way this diagnosis provided the discipline I needed and I know wasn’t getting before. That’s not to say certain things are and won’t be compromised; but as the most important things have come into focus, my happiness has improved suddenly and immeasurably.

The Multiple Sclerosis Association of America (MSAA) asked me to be their first national ambassador in the fall of 2011. Standing in the middle of Times Square, I almost dropped the telephone through the subway grating — a million emotions rushed through my mind. I was feeling honored, fortunate, and inspired. But as with all major decisions, there were a few immediate doubts.

I deliberated it with my publicists and I had a meeting with several members of the staff at MSAA, I thought about it even more, and when I said “yes” to them and to MSAA, my story went public. Press releases, articles, Wikipedia page, etc etc.  Would this mean I miss out on opportunities because people are scared of an unfamiliar disease? Weeding out riffraff clients? I never cared an inch whether people judged me for any reason before, so, why start now.

This position gave my photography – doing what I love most – a whole new personal significance. It spun me around full circle; I was honored that such a big-hearted heavyweight in the fight against MS saw something in me to represent their ideals and speak on behalf of their mission, helping them  reach their goals.

Now I have the clarity of my limitations, sharpening and shaping my happiness. Colors have gotten bright again in the space I move around in, and I have comfort in knowing that when I can drop this one little story in with the oceans already full of them, it’s one more person saying something, and one more friend that knows a little bit what it’s like.

As ambiguous a condition as MS is, we can treat it, help it, acknowledge it, move around in our lives, and be who we are.

One of the best lessons I’ve learned is that I can’t control my circumstance, people, or exterior situations. What I can do is control my reactions to them, and live on. MS of course is far from ideal, but it is true that who I am, now, I’m better for it.

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