My Journey with MS Injections and Others’ Perceptions

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Sometimes like this weekend, for example, things will get to me. I attended a wedding weekend in paradise, bikini-clad in the Florida Keys, spending time with really great people, many of whom I’m meeting for the first time. And moreover, they’re meeting me for the first time. I was the best man’s date; his younger brother was getting married. I love social environments and enjoy meeting new people, especially those close to the people I love.

I was diagnosed at 23 years old. Beginning then, I decided it was all I could do to keep my life and my health in control where I could. I value keeping up on my treatment, staying healthy, and taking the disease seriously. It puts me at ease knowing I am actively doing all I can, and I’m proud of that. After locking down the “controllable” details (regimenting injections, exercise, diet, keeping up with friends and relationships, living in a positive environment, and embracing happiness), I’m freed up then to make the best choices possible when confronted with “life.” In this way, I am generally relaxed and comfortable in my own skin, navigating situations with conscious control and attention. When I’m walking around with injection site spots at a beautiful beach resort, that’s a time it’s a little easier to forget to be sensitive to the topic.

I’ve been able to stay healthy without experiencing too many symptoms too often. So for an otherwise healthy 27 year-old girl, it’s the (we’ll call them) “little things” that I’ll forget about. And truthfully, to me it seems those things can affect everyone else before they affect me. I attribute it to fear of the unknown. “Anna, you are SO sunburned on the top of your leg and on your hips! How does that even happen? Or is that a bruise? Hey, is your man beating you!?” (Referring to the best man.) Bless his heart…

Living with MS and injection site reactions and red welts, those marks and bruises from the shots that slow down the disease, I’ll forget about them unless they hurt or become somehow more inflamed. My boyfriend is mostly used to them, but I know it makes him sad that they’re even there at all; it’s just another reminder of the MS. When people see bruises in weird places, they’ll assume the man you’re with is probably the one beating you… You notice those looks and darting eyes. We talk about it and how he feels, and sometimes if I do something clumsy or forgetful, he’ll think, “Is that the MS?” and then he’ll go, “Do I have MS?” (Referring to himself.) Adorable.

Bottom line is, I don’t worry about people feeling awkward when I tell them that I have MS, I’m not embarrassed, and I’ll talk about it to anyone who’s curious. Once the unknown becomes understood, nothing’s a big deal, and in some strange way, it can make the connection deeper and easier. The whole thing seems to make me a more compassionate and happier person. The reactions when I tell a concerned party not to worry, are something between a quizzical look and concern, so then I’ll go on, “I have MS.” And then the, “Oh I’m so sorry,” etc. I guess why it gets to me, really, is because I feel like some people are condescending, or something even more cavalier. I’m doing everything I can do to control what I can and be the healthiest I can be, but those red spots are a blessing, and I’ve grown to learn to see them that way.

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The Other Side of the Lens – Working with Neurology Now

What a blessing this past year has been working with MSAA. After having announced my multiple sclerosis (MS) publicly, I have become overwhelmed with ardent, sincere responses and appreciation, stories, and gratitude.

Through my role as an ambassador for MSAA, I had the wonderful honor of being recognized  in the publication, Neurology Now. Managing editor Mike Smolinsky and photographer Annie Levy requested a photo shoot and interview with an individual living with multiple sclerosis to feature in their publication, and I was chosen. It was a great honor to work with these two professionals.

Having my own portrait taken is, to say the least, a rare occasion for me. I knew Annie’s body of work, her stunning portraiture. Looking through her lens was not intimidating for me, but rather, it seemed no different than looking straight into her kind eyes. I was able to relax, feel comfortable, and be me. And of course, that is every photographer’s dream.

Finding out we lived so near to one another in Brooklyn, Mike and I were able to take some time to grab a coffee and meet in-person. For someone so busy to take the special time out of their day to get to know a subject made me realize that I was working with a rare and world-class group of people. After a full, enriching conversation, Mike and I had to part, knowing full well we could have gone on, and on, and on sharing ideas and stories until the sun went down.

Being recognized and working with the team at Neurology Now was a true joy, and an honor. Because of all the intricacies involved living with MS as a young female photographer, it feels liberating to speak openly to people who want to listen. Throughout the month my mailbox has claimed the most touching letters from Neurology Now readers all throughout the country. Getting to know these people and their stories, as well as feeling their gratitude and openness, has really been the true blessing. There is something about anonymity that can be a catalyst for conversation and sharing, straight away. Without judgment or fear, I have never known or have gotten to know others through such open lines of communication.

A very tender thanks to Neurology Now,  MSAA, and to all the readers out there who I can now call my friends.

Check out Anna’s portrait in Neurology Now!

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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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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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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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