First Spotlight! Introducing Jon Gardner!

John Gardner & John Ferrarone
at archery! MDA camp

I've mentioned the Muscular Dystrophy Camp I volunteered at ("A Special Place for Special Kids") a few times now. It's not only one of my favorite places, but it's also where I first met my boyfriend John (click here in case you missed the full story). John was my friend and fellow counselor for several summers and he was always paired up with a camper named Jon Gardner. Over the years, Jon has become very important to both John and me.

John & me at the
 annual camp dance

Whenever I hear Jon's name, I immediately recall him smiling laughing with his friends and showing great kindness toward younger campers. He often said that, in his eyes, MDA camp "was the best place in the world."He started attending as a little boy, remained a camper until age 21 (when he had to "graduate") and now, even with profound physical obstacles in his way, he still volunteers every summer. I remember Jon's favorite place to hang out at camp being "Radio" - an empty barn with music, ping pong, chairs to hang out on, a water park to play around in, and other games. He loved to select the music for people to rock out to and simply took such joy in the joy of others. 

John with counselors 

Kristi and Kristen
(being a ladies' man as usual)

Undoubtedly, Jon represents everything good about MDA camp and people in general. Despite living with Duchenne Muscular Dystrophy - a progressive and life-threatening disease - he always manages to stay his kind, optimistic and special self. He's always thinking of others and, even when he started coming to camp with a breathing tube, that smile never left his face. There are few people in this world who can say they soak up every bit of their life, but John certainly can. The difference is he actively chooses to hang out on the bright side every day. I've learned so much from him and know you'll enjoy getting to know him more by reading his answers. Jon, thank you for being my first Spotlight and for being our perpetual bright side.

What is the year you were first diagnosed? How old were you ? Well I was 5 years old, so it was either 1988 or 1989.

What would you tell someone who has been newly diagnosed with your condition 

and/or a chronic illness in general? 

It would be very difficult to figure out what to say to someone diagnosed with Duchenne Muscular Dystrophy. This is because everyone is diagnosed at a very young age (likely between 2 and 6). I know at that age I wasn't even sure of what I had. All I knew was that I was slowing down, falling down a lot, my legs were getting tired easier, I couldn't run as fast, and I couldn't keep up with the other kids. I was experiencing what was happening to me, but I didn't necessarily understand exactly. Going to MDA summer camp taught me a lot more because I knew many people were like me and were going through what I was. I had seen what someday I'd become. I'd seen the entire disease process right in front of my eyes by seeing the other campers of all ages. I feel that the only person who could say something to help me through would have been and older person with Duchenne. I do know whatever someone would tell me...what I'd seen and experienced would always have a much greater impact on me, deep down in my soul. I would tell the child to be strong inside your heart, don't let anyone make you feel worthless, you will make it through as long as you have a positive attitude and always smile no matter how hard things get. Don't be afraid to cry, but be strong whenever you can. I promise someday you will be rewarded by your strength and courage, someday you will run again.

Please explain a bit about how your condition affects you (for example: what are the symptoms and what is the hardest part to cope with? Has the disease changed over time? etc.) 

There is major weakness in every part of the body, it can be hard to breathe at times, I can barely move, it feels like you're being weighed down so much. No matter how hard you try to lift or move certain body parts, they wont budge. Hardest to cope with is not eating normal food, delicious food I used to be able to eat like lobster, shrimp, clams, KFC, pizza hut, taco bell, Chinese food, Italian, cake, strawberries, etc. Hey, I can still eat ice cream - Yum! Other hard things are not being able to barely do anything on my own, independently, and having no control. Yes this disease changes with time a lot, yet slowly. The entire body gets weaker and weaker, and the weaker I get, the less I can move. Different weaknesses come with different effects on the body. 

Jon and his whole bunk of friends
MDA camp "back in the day"

What are 3 things you couldn't live without? 

Jon at his high school graduation

God, Love, & Life

What are you most proud of? How I've coped with this disease, stayed positive through it all, even with all that I've lost. Also, graduating high school.

Where do you get your strength? God and from my heart and soul. The love of life, the sun.

If you could send one message to medical professionals around the world, what would it be? Humanity, kindness, love - do not remove your real emotions that make you a human being. Do not be afraid to feel for a patient even if the patient dies or will die. If you are told not to cry or to be numb with your feelings, when you do this you lose your humanity. Death is a way of life, it makes it hard for a patient that will die someday, but it will also make you a stronger person inside. It will make it so you are not afraid of death, make you accept death as a natural part of life. Research Duchenne Muscular Dystrophy. We can be fragile. We can seem fine one moment and drastically turn for the worst the next moment, we need help with everything. Listen. Do not think you know it all because you don't. Sometime the patient knows far more than you think.

Love,

Maya

A Painful Truth & Some Fresh Hope

I've tried to spare you all the ambiguous details this summer until I had something concrete to say. But, after coming back from Italy (an eight-day, pain-free gift), I've taken a progressive turn for the worst. My pain is everywhere - in every joint, muscle, tendon and ligament that one could name. It became so painful between my ribs, for instance, that I've been struggling to take deep breaths or even get enough oxygen this summer. Earlier this month, I went through an unpleasant round of tests to rule out serious lung and heart problems, but as usual it all came back to the inflammation.

Giving a toast
 at Josh & Erica's wedding

The "thick and thin" are both inevitable when you're living with Spondylitis, so if I stopped writing now when it's gotten really hard, I wouldn't be doing this blog justice.  So the truth? This summer I've felt scared. Days have passed, school is quickly coming down the pike, and I'm hurting more than I ever thought I could hurt.  I've started to feel cheated - an emotion I've always fought so hard against. I hate living my life with the backdrop of pain. For example, I resent that when I reminisce about my brother's wedding, I don't just remember the happiness of the day. I also recall the crippling rib pain and see it in the photos. I hate that I've had to cancel so many plans this summer and miss out on time with my friends. I hate that I can't sing, dance or even laugh without pain. Most of all, I hate that my optimism and zest for the future has felt distant for months.

I've had an outpouring of love, letters, visits and care packages from the wonderful people in my life and, despite everything, I've still been able to make some great memories this summer. Obviously it hasn't all been bad, but no matter where I go now, this pain goes too. That's the difference. There has been no reprieve for months - not even for a moment. I've dramatically increased my pain medication (something I'm not comfortable with) just to be able to walk or breathe. I've had a hard time staying awake and spend most days laying down. This isn't the Maya I want to be.

After seeing my rheumatologist this week, I have hope for the first time all summer. She confirmed that, after 5 years on Humira injections, my body has stopped responding to it. The same thing happened with Enbrel after 4 years of relative success (so far not hopeful, I know). While it's totally scary that this can happen, leaving me with no safety net, there is good news there. I'm not some mystery. My doctor seemed concerned, but she also seemed to understand my body. She had ideas. After more than an hour of discussion with both her and my mom, we've decided I need to start Remicade, a monthly IV infusion. She also started me on prednisone  (a steroid) for the time being to get the inflammation under control (beginning with a big ole' shot in the butt! Good times).

The truth is, I'll do anything to get better and to live the life I want. Needle after needle, 3 hour IV infusions, steroids that can make my face look like a puffy dinner plate...bring them on. As long as I feel better than this, it will be worth it. My greatest hope right now is that the Remicade will be a success, and my greatest fear? Well I'm not letting myself go there...

Thank you all for reading and for your support. It means everything.

Love,

Maya

Looking for Spotlights!

n 24 years, I've had some truly incredible people pop into my life. Some of them I've know for years, while others I've never met in person. They're different ages, different races, and live by different religions. Some have never been sick more than a day in their lives, while others are living with chronic illness and/or a serious disability. However, they all make me want to be better. At any given time, I can say I have friends learning and doing fantastic things, so why not share them with the world?

When I wrote about Miss Mary in my May 24th post, I got some great feedback! Not surprisingly, people loved learning about this awesome chick and reading her thoughtful responses to my questions. Even though I undoubtedly embarrassed her a bit, I loved writing that post. I was further inspired after finding and participating in Jodi Mckee's Autoimmune Portrait Project. What better way to spend a few moments of the day than learning about another human being?

So I've decided that "Spotlights" will ideally become a recurring element on this blog! I've developed a short, but hopefully thought-provoking list of questions to send out to participants. If you are currently living with an illness and/or or disability (or have ever lived with one) and you're interested in being a "spotlight", please shoot me an e-mail at mklaub@gmail.com! I'd love to get to know you.

Love,

Maya

A Professor To Remember

I remember going on tours of college campuses that were often led by overly zealous student guides. After a while, the beautiful buildings, the vast opportunities, the prestigious alums...they all seemed to run together. Don't get me wrong - they were fantastic - and, for all of those reasons and more, I feel so lucky to have attended Colby College.

One thing I do remember, though, on most of those tours were the looks on the guides' faces as they spoke about their professors. This was particularly true at Colby. It was the way they described these connections that stuck with me - the way one or two professors invested in them as human beings (not just as students) and how how it changed their course in life. At the time, I couldn't picture having that sort of relationship with a teacher, but four great years and one English major later,  I became one of these gushing students. I found professors that made me grow in ways that I'm still discovering; individuals I still speak with today and who will always inspire me tremendously.

I wrote about these professors in my March post, The Strength Of Poetry.  Peter Harris is an English professor who incidentally taught my three favorite courses at Colby: my senior poetry workshop (where I had the chance to complete an intensive poetry thesis), Buddhism in American Poetry, and Teaching Poetry in Schools. The latter gave me an incredible opportunity to teach poetry to local elementary students. It was amazing! Peter's classes weren't just classes - they were experiences. They fueled not only my love of reading and writing, but of life. It's hard to articulate, but they made me feel like I belonged. 

Since I know Peter understands illness and also cares about me, I recently reached out to him about my pain. Somehow I knew he'd say the right thing in a time I was feeling overwhelmed. He replied promptly and, within his letter, was this poem by Emily Dickinson:

Pain--has an Element of Blank--

It cannot recollect

When it begun--or if there were 

A time when it was not--

It has no Future--but itself--

Its Infinite contain

Its Past--enlightened to perceive

New Periods--of Pain.

As I learned from Peter, Emily Dickinson was a person who often lived in great pain. This poem reflects a central truth about pain. No matter how one might try to anticipate a better day in the mist of suffering, real pain pulls us back into the moment. This speaks to the scope and depth of my own feelings when I'm at my worst. Especially this summer when I haven't experienced a reprieve from this pain, I find myself believing it will last forever. But it wont. I have to remember that it wont.

Peter, thank you for  everything you've taught me and continue to teach me...for knowing I needed this poem and for the reminder that my emotions are universal. Thank you for helping me to become a writer and a better person. I am better for knowing you. Most of all, thank you for caring about me years later and for the reminder that, because of the written word and people like you, I'll never be alone. 

Love,

Maya

Top Blog Award!

I'd call today a 9 on the pain scale - a number I don't easily admit to - so when I opened my inbox this afternoon? I really needed what I found there.

Loving with Chronic Illness was awarded a Top Chronic Illness Blog of 2010 by Medical Assistant Schools! Such a great surprise and I hope this means I'll connect with even more wonderful readers.

Presented by: Medical Assistant Schools


This blog was nominated by a reader and then judged by a panel, so if you initially nominated me, thank you so very much. It was the pick-me-up I needed to keep going today and to remind me that good can still come out of this two-month flare. Thank you to everyone who reads and supports my work...you're all such an important part of my life. I'll write more soon and hopefully I'll be feeling a bit more like myself. 

Love,

Maya

New York City Tips & Looking Forward

I've had many great memories this summer, but overall I can't say it's been an easy few months. It's been the longest and most "Spondylicious" period that I've gone through. By the way, how do you like my new word?

Spon-dy-li-cious

adjective

1. About or relating to Spondylitis 

2. painful and exhausting

3. the sensation one has been run over by a truck

(Spondylicious...spread the word! At least it hopefully added a little humor to your day.)

Between recent medical issues, I haven't had much time or energy to think about my second year of graduate school, let alone to get excited about it. Lately, there has been a persistent little voice telling me to give up; that I'm too sick to hold a job anyway, so why waste the time and money getting this degree?  Unless things get much worse, I am going back this September. I'm going to keep plugging away at this degree because, even though my goals seem out of reach at the moment, I have to believe they're still attainable. As I've said before, no one knows what their future holds and John reminds me constantly that there may even be a cure in the next few years. All I can do is try and having this degree in my pocket...wanting to help others living with chronic illness...these are things that have always meant so much to me. 

To help get myself excited about this year and moving back into New York City, I compiled a few resources that have made city life that much better for me. I hope they can make living in or visiting NYC better for you too!

I'm a huge theater lover - especially musicals - so it's a good thing I live in the Big Apple. When I found the Theater Development Fund (TDF) online, it was love at first...purchase. You just have to be one of the following to buy the $30/year membership: full-time students, full-time teachers, union members, retirees, civil service employees, staff members of not-for-profit organizations, performing arts professionals, members of the armed forces or clergy.

A bit more about TDF: Members can buy up to 9 tickets per show! Just this summer me and two of my best friends had 3rd row seats to South Pacific in Lincoln Center!! These were tickets that would have easily approached $200.00 + if we went the traditional route, but we got them for $35.00! TDF Members enjoy discounts to hundreds of Broadway, Off Broadway, music and dance productions each year and they've recently added "Off-Off Broadway" shows for just 9 bucks.

Bryant Park

Located at 42nd street between Avenue of the Americas and 5th Ave., Bryant Park is probably best known for hosting New York City's Fashion Week. However, being in the midst of summer reminds me of the tremendous range of free events (outdoor concerts, movies, lectures, readings, yoga classes, etc). Click here for a calendar of events this week and in weeks to come.

About the Park: Bryant Park is for the people of New York City and considered to be the greatest public space in the world. The ongoing mission of the Bryant Park Corporation is: to create a rich and dynamic visual, cultural and intellectual outdoor experience for New Yorkers and visitors alike; to enhance the real estate values of its neighbors by continuously improving the park; to burnish the park's status as a prime NYC tourist destination by presenting a meticulously maintained venue for free entertainment events; and to help prevent crime and disorder in the park by attracting thousands of patrons, at all hours, thus fostering a safe environment.

The 92nd Street Y

The Y has quickly become one of my favorite spots in the city! It offers classes, lectures, and concerts for any interest out there - art, music, dance, film &; theater, languages, literature, Jewish life, parenting & families, health and fitness, finance, etc. For those who have been reading this blog closely, this is where I took the class with one of my favorite poets, Terrance Hayes. Click here for a full list of events coming up in September (you can even search by interest!)

NYC Discovery Walking Tours 

Virginia in front of
e.e. cumming's NYC apartment
on our walking tour

This is something I recently discovered when my friend Virginia came for a visit. We went on the West Village History & Dessert tour and it was a blast. We learned a lot about the history and culture of the village while sampling yummy treats along the way. What could be better? These walking tours are a great way to see the city in a new way without feeling like a typical tourist.

The city has so many fantastic museums, zoos and botanical gardens (that's just the tip of the iceberg) and, while life gets crazy sometimes, it's nice to slow down sometimes and remember it's all outside our door. Check here for a comprehensive list of New york "must-sees", admission information, and a guide to which museums are free when!

Columbia University Arts Blog

While the variety in New York is amazing, it's also pretty overwhelming. That's why it's nice to find blogs, websites or even people who can give you helpful tips and sort through all the city has to offer. The Columbia University Arts Blog is one of my favorite resources.

About the blog: "An attempt to make arts and culture a meaningful part of every Columbian’s experience. Its diverse programs encourage students, faculty and alumni in all fields to generate, study and engage the creative life of the campus, the city, and the wider world."

And on to food...

Fresh Direct is the best thing since slice bread. As someone living with pain and being unable to carry heavy bags, shopping online for my groceries, picking a delivery window, and just waiting for a delivery is life-changing. The best part is that this company isn't any more expensive than regular NYC grocery stores and often has great deals.

Open Table is a website that allows you to not only make reservations quickly online, but gives you accurate reviews and lets you rack up dining points toward free meals as you go.

My 2 favorite restaurants:

1) From my experience, Italian food is pretty hard to mess up (even I can cook it), so to stand above the rest really says something to me. Regional is not only close to my apartment, but it has the best Italian food I've eaten outside of Italy itself. It specializes in the cuisine of many different districts of the Italian peninsula and is very moderately priced.

2) Looking for the best brunch in the city? Sarabeth's is totally worth any wait you might encounter on a weekend morning because, deep down, you really can't blame anyone in that obnoxious, hungry crowd for wanting to cut in line. I've only been to the location on 81st & Amsterdam, but there are others around the city. Don't forget to try the four flowers juice!

And here are some of my favorite wallet-friendly sites that offer eclectic activities, while also sharing some well-kept city secrets:

The Skint

About skint.com: Two underemployed friends used to tip each other off to cool bargains and free goodies they'd hear about. now we list them here. We'd like to think that the skint proves you don't need to be rich to enjoy the best of the city.

Time Out New York

About Time Out: The online version of the magazine. Time Out is a comprehensive guide to the city's art, literature, dating, nightlife, comedy, theater, dining, and way more. If you're having trouble planning your weekend, it helps you out big time.

The Thrillist

About the Thrillist: You need info on hot new restaurants, gear, bars and entertainment in your city. Thrillist has it.

The Gothamist:

About the Gothamist: Founded in early 2003, Gothamist has been described by The New York Times as a "marvelous, not-to-be-missed Web site" that "reflects everything worth knowing about this city.

FreeNYC

How can you get cheaper than free? Free, fun options in the city that never sleeps

Groupons:

How It Works

Each day we feature something cool to do at an unbeatable price.

You only get it if enough people join that day… so invite your friends!

About Groupons: Available in many cities, Groupons is an antidote to a common ailment for city-dwellers: there's so much cool stuff to do, but the choice can be overwhelming. With so many options, sometimes the easiest thing is to go to a familiar restaurant, or just stay at home and watch a movie. As a result, we miss out on trying all the cool things our cities have to offer. By focusing on one good or service each day, Groupon makes it simple. And by leveraging collective buying, Groupon is able to offer deals that make it very difficult to say no.

Brokelyn

About Brokelyn: A wallet-friendly guide to one of New York's finest boroughs. The websites boasts, "We act as though comfort and luxury were the chief requirements of life, when all that we need to make us happy is something to be enthusiastic about.”

And one last tip: if you have a terrible sense of directions like yours truly, check out HopStop - a dumby-proof guide to traversing the big cities of the world. 

What are your city secrets, wherever you may live?

Love,

Maya