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2016-04-30 09.01.50 HDR-2

from the floor of wordcamp

I’m sitting on the floor of the lobby of University Center, a dorm for the plethora of universities in this part of downtown Chicago. It’s been a few years since I have found myself plopped down with a crowd of people, socializing, typing and resting.

This morning as I was checking in at WordCamp, I texted my friend and frequent conference buddy Erica about this magical place I found myself. I texted her this morning about how great it was to be at a conference where no one had any fucks to give about appearances.

Let me be clear, it isn’t that I showed up to a conference of slobs. They were here, too. But it was the fact that no one cared what I was wearing. The style of my hair didn’t have to be premeditated. I didn’t have to agonize over how I should do my makeup.

I got to show up and be me. Just nerdy me. With a top knot and leggings and orange canvas gym shoes. I winged my eyeliner because I could, not because I had legions of people to impress. Or worse, compare myself to.


Back to the floor. I’ve met people I never would have met if I was worried about what people were thinking about my outfit. I’m not worried what people will think about my cane if I end up needing it. I’ve had several offers of people to help me hack my cyborg parts.

I’ve talked about tattoos and PHP. I’ve talked about careers and families. I’ve talked about my blogs and other people’s podcasts. Sitting on the floor. Charging our phones. Being ourselves.

friends at 25 and 30, in good times and bad

A bestie, or 10, to get me through the nonsense

It’s National Best Friends Day. And that means I need to send hugs to so many people.

I’ve never been the person who had one friend the confided every secret to. For a long time, the people closest to me had no idea that I was in agonizing pain every day. That I was heading to the hospital to have needles full of numbing drugs pumped into my spine weekly, just so I could survive. I was terrified I would lose them. That my troubles would bring them down and that they didn’t need to deal with another slew of medical drama.

I did everyone I called a friend a disservice those couple years. The friends I didn’t call because I didn’t have good news and I was loathe to bring them down. The friends I didn’t see because I couldn’t bear to go out any more than was absolutely necessary. I thought my friends needed “Fun Mary Fran” and I was anything but.

I wanted to protect them. I wanted their lives to be full of the light that seemed so absent from my life. For a time, I forgot that friendship was a two way street. I wanted it to be like it had been. Full of unabashed life-living. A band of good-time gals. I just wanted to be the girls who made midnight runs to Johnny V’s and cracked themselves up at inside jokes. The girls who’s biggest problems were our fashion homework due the next morning. I wanted to be the person who would stay out all night on International Illini night and make it to work at 8am the next day. I wanted to be the girl who knew how to bake chocolate chip cookies from scratch, no recipe needed, on demand when Grey’s Anatomy beckoned. I wanted to be Holly Golightly. A girl, her cat and not a care in the world.

Except, that wasn’t what defined my friendships. My college girlfriends banded together when a friend got pregnant sophomore year. They counseled me through dropping out of fashion school and realizing that I really should have gone to that big state school. We stuck together through bad boyfriends and worse life decisions. Growing up and learning how to live. We turned twenty one. Twenty five. Thirty. A phone call could pick up a conversation when six months had lapsed while babies were born and couples were wed. When tradgedy struck, there was never a question of if we were going. It was just how soon could we get there.

When there were exams to take and studying to be done, there was a friend to share notes and a pot of coffee with. When I spent weeks in the hospital, I ended up with notes from an entire fraternity (by way of a friend) so I could ace an exam. The same friend who was there when a roommate moved out without notice. A friend who called weekly after the car accident. Who talked me into a trip to New York so we could meet somewhere between Chicago and London, because we were used to the distance between Champaign and Urbana. Who told me to skip that trip when my grandma had a stroke hours before my flight was supposed to take off.

GFFs are the best BFFs

We played softball together. Ran 5ks. Slept on couches and ate greasy breakfasts. We celebrated the passing of CPA exams and the end of tax season. We wore shoes that gave us blisters to clubs so we could dance our cares away. We had all day cook-outs and all-night parties. And then we had bad bosses and terrible jobs. There were scares. There were triumphs. Art shows and graduations. Cross-country moves and tragedies. We went there and back again.

they're all best friends

How I thought our friendships would be better if I kept my pain and my struggle to myself, I’ll never know. Because that’s what best friends do. They carry you through. They help you find the magic again. And you let them. They’ll send you text after text of funny memes or pictures of blinged-out canes. They’ll protect you fiercely when the internet starts to hate. Because, damn it, you would do the same for them.

You all taught me how to be a better friend. You taught me what it meant to be a best friend. It might have started with “sex on the inside” and fashion homework. Hated English teachers or preschool ballet and church choir. The time vortex on platform 9 3/4. But it sure didn’t stay there.

Because of you, I have my GFFs. I have people who currently have excellent taste in teeshirts. I have family that doubles as friends.

friends in cupcakes tees, family as friends, friends in wigs

And now, at thirty, I was able to make another best friend. A friend who takes the time to bring Chipotle to the hospital and pack bags of good cheer when I’m going to have to stay for a few days. A friend who never lets it be too long (even when it seems too long) between coffee dates and “friday night gatorade” (margaritas after a particularly sweaty yoga sculpt class). A friend who reminds me to keep moving forward. To get stronger. To never stop fighting. A friend who, somehow, became irreplaceable in my life and taught me how no matter what we’re fighting, we don’t have to accept the terms.

I don’t have one friend who is the top dog on the pile of friends. I have a tribe of best friends. Inspiring, loving friends. People I can be just Mary Fran with.People who are there for the days when I’d rather cry than talk. People who are there to celebrate the wins.

People who know where the bodies are buried and where to get the best margaritas by the pitcher.

 

inside joffrey

Dance your cares away: infusing movement with positivity

This website started out of a personal challenge – turning little notes I used to make for myself into something slightly more tangible.

And then it grew into regularly designing new posters and quotes as I struggled with loss of agency and a growing despair that my life was never going to be the same again. I let myself wallow. Sure, I had accepted the disease and the pain, but I hadn’t yet found a way to let them become simply a foot note. (I might never find that, and I am growing accustomed to it.)

In January, something amazing happened. I had a treatment that not only allowed me to function but to thrive. My pain was at a level that I had previously only dreamed of. I didn’t have to try to convince myself that a day was survivable or have to hide a myriad of emotions from the world.

That five day epidural infusion with a bisphosphonate chaser made me bold. I signed up for ClassPass and took a yoga class (before I saw my doctor because I wasn’t willing to hear that I needed to take it easy).

When I saw him (after 2 yoga classes), I got bold. I had made it through yoga. I had a friend cheering me for every step I took. I was suffering from some major cabin fever. I have a bucket list that isn’t getting any shorter.

At my appointment, I eased in with asking about going to yoga and low-impact cardio (like spin classes) and got an encouraging response. So, I asked.

“Do you think I could start taking Irish dance classes?”

Long pause. Sharp breath in. “Like full-on River Dance?”

“Not quite. It would be what they teach 4 year olds – I’ve always wanted to do it. It’s on my bucket list and I’m not ready to give up on it.”

“Can’t you just do videos from YouTube for 5-10 minutes at a time? Being in a class makes it too easy to push past where you should be.”

“It wouldn’t be the same. Besides, I miss being active. I gained back 80 pounds after my diagnosis because I had to stop running.”

Another long pause.

“Well, what about starting with ballet? Every movement isn’t a jump.”

“I can live with that. But I’m not taking Irish off my bucket list.”

Klutziest 30 year old in the world begins ballet

I took ballet and tap as a wee one. In high school, I took dance instead of PE and tapped after school. But other than 3 years of little kid ballet, I was starting from scratch.

I googled and found gobs of grownups who started ballet later into adulthood. I found myself getting hooked on dance before I even started.

I found a novice ballet class on ClassPass that I could try without committing to more than just one visit, bought a pair of ballet slippers and jumped right in.

Two months later, I take ballet 2-3x per week. I take Zumba (jump-free) and Dance Fitness classes a couple times a week and squeeze in some yoga and strength training when I can. None of my other classes bring me to my happy place the way ballet is.

For 60-90 minutes, the world fades away. I can focus on how to make sure my legs are doing the same things. I can focus on engaging muscles and relaxing my face. I can focus on everything but the pain.

Ballet gives me power over my body. A power that I lost four years ago and was afraid would never return. A power that I had tried to obtain multiple times but never quite got. Ballet gives me what I thought I would get from yoga. After each class I can see an improvement in how my CRPS-affected leg mirrors my good leg. I feel stronger. Every day tasks are getting easier.

That last epidural is wearing off and pointing my toes is growing more painful, but I’m pushing through. Not because I feel like I have something to prove, but because dancing has brought me somewhere I didn’t think I’d ever get again. Because moving is a gift and a responsibility.

I know this isn’t 100% in line with the original concept of this blog, but it is an important part of my journey to be positive despite the CRPS pain and this felt like the most natural venue to share.

2015's resolution - "kiss a lover, dance a measure, find your name and buried treasure. Face your life, its pain its pleasure.

Do it up right.

There is such weight placed on the first words of a new year. They are supposed to be profound observations and wishes of ourselves and our world. Optimistic words resolutely marching into being. Wisdom gained from the past year’s trials and hope evolved from the year’s joy and celebrations.

Dang. That’s a whole lot of pressure. Particularly from those of us who are pretty sure we’re fumbling along in our messy lives, faking it til we make it. If you’re reading this, I’m going to go ahead and assume you’re a bit like me. (And prone to rambling while you find your way through your thoughts and words).

2014 was a process.

You learned things this year. You challenged yourself in ways you hadn’t thought of. You forgot half your resolutions before the Super Bowl arrived. You rationalized a bad habit or two (I’m sure it is you and me keeping Starbucks in business). You had deep conversations with your cat. You marathoned (the TV kind). You fought for something (your body, a friendship, a cause). You won some. You lost some.

It was a year. It was both good and bad. Joyful and heartbreaking. Painful and carefree. At times it was more of one and less of the other.

The real story? You lived. You’re alive. So there’s work to be done.

You want to be more organized. Be in better shape. Have more savings. Look more put-together (hoodies and yoga pants are not the wardrobe of a professional thirty-something…well, until it became the hot new thing). Drink a few less lattes. Share a few more days with friends. Tackle the big picture. Win your battles. Live your life. Be a better friend. Share kindness.

So? Make it so.

make it so

But not with lists and plans for that pie in the sky

There is so much of my life that is out of my hands – it’s what happens when you’re sick – that a goal of 10,000 steps a day or trying a new fitness craze will inevitably lead to disappointment or a feeling of failure.

This year, instead of a list of lofty goals or resolutions, I am going to save myself the heartache and strive to live the best life I can every day. I am going to be present in the moments of my life. I am going to face down this pain when it rears its ugly head. I am going to embrace the people in my life.

From there, the other things grow. If I’m facing this disease, I might just eat more kale to give my body the power to fight. If I’m savoring the moments, I might just be a better friend. If I go my own way, I might just find the path I was looking for.

Now that’s a resolution.

When I started working on the graphic for this post, I was going to use one of Neil Gaiman’s New Year’s Wishes, but I stumbled upon this quote, and I think it says it just right:

“Kiss a lover, dance a measure, find your name and buried treasure. Face your life, its pain, its pleasure. Leave no path untaken.”

2015's resolution - "kiss a lover, dance a measure, find your name and buried treasure. Face your life, its pain its pleasure.

 

Bulkhead row on a Southwest flight to Dallas in 2013

A theft of personal agency

The ability to think and act for yourself is probably something you take for granted as you pass through the world. I always had. As a tri-lingual, 30 year old professional with multiple degrees and expert knowledge in her field, there is no reason why there should be any threat to my personal agency. Until there was.

Stealing that ability, that right, from any individual is wrong, no matter how good you think you are being.

Last week, I was returning to Chicago from the Food Allergy Blogger Conference in Las Vegas where I was brought in to run a blogger help desk. Things were a little crazy at home because an air traffic control tower had been sabotaged, and I knew getting home might take longer or involve delays. I arrived at the airport 30 minutes too early to check in for my flight, so the woman working check-in allowed me to go standby on an earlier flight because of the mess in Chicago. I checked my bags and got a temporary boarding pass – to be reprinted and confirmed at my gate.

Because of the CRPS in my leg, I usually opt for a wheelchair in the airport. I am less likely to get bumped, security lines are less stressful and no one gives you a hard time about how “healthy” you look when you ask to preboard. I have done this every time I have gone to an event in the past few years I have followed this same routine. Check bags, get wheelchair, get to gate and confirm preboarding status, grab a coffee or a glass of wine – whichever is closest – and settle in until boarding begins.

All these steps were under my control. I decided whether I could leave a gate or not. Whether I was going to ask for standby status or to be rebooked when conditions went awry.

On Monday, September 29, 2014, my personal agency was taken away by Southwest Airlines.

Despite starting like any other trip to the airport, it ended very differently. Upon arrival to the gate where my new, rebooked flight was going to be boarding, the gentleman who was driving my chair went up to the desk to get my boarding pass. That part was normal. When he came back with a boarding pass and told me we were going to a different gate. Despite protests from me that, no, my flight as at the gate we started at, we kept going.

When I could see the new gate, the flight there was already boarding, so I was hoping that maybe, just maybe, it was not the flight the guy thought he was taking me to.

I was more than just a little out of luck.

We arrived at the gate, and the agent at the desk said, “Oh! We’ve been waiting for you!” My answer? “I don’t think this is my flight.” “Oh yes, it’s going to Chicago. You’re in the right place.” Her voice trailed off as the wheelchair man (does he have a better title?) rushed towards the jetway and around the lined up passengers. When the gate agent scanned my boarding pass, she reiterated that they were glad I made it. My response?
“This isn’t my flight. My bags aren’t on this plane.”
“Oh no, this is the right one.”

As we are going down the jetway, I tried one more time to plead with the wheelchair man:
“I can’t eat anything on the plane, I need to get lunch – this is a 5 hour flight!”
“No, no, you’ll be fine, this is your flight.”

When we arrived at the airplane door and he handed my backpack to the flight attendant, I tried again,
“I don’t want to be on this flight, I’m not supposed to be here.”
“Are you going to Chicago?”
“Yes, but…”
“You’re in the right place.”
“I really need to get off the plane, I can’t climb over people on the plane.”
“We’ll move someone so you can sit where you are comfortable – this is your flight.”

Great. It was most definitely not my flight (I had to wait 2 hours to get my bags even though Southwest forced me on a different flight — it was that or come back in 5 days. They refused to send them to me despite the nightmare I had just been through). So, I got to eat Dill & Sour Cream Plentils and a smushed TruBar. For lunch & dinner. Thus began five hours of stress eating lentil chips and furiously working on a project from my day job to keep the frustration at bay and the flavor dust from the chips off of my hands.

But there was nothing I could do to stop it. I felt kidnapped. I felt like a 13 year old who knew that she was perfectly able to think for herself but the world still sees her as a child. This incident should never have happened to me. It’s something that would never happen to an adult who was walking on their own, so why would you do that to someone who was not? Was it because you wrongly assumed that with the girl with the wheelchair couldn’t make her own decisions? Was it because your staff was certain that I should be happy to be rushed onto an airplane without a chance to buy an overpriced airport beverage? Or put my lucky $2 bill my aunt sent for my birthday into a slot mach? Or eat a freaking salad?

Getting on that plane should have been a decision made by me and only me. Not a gate agent or a wheelchair man. Not a flight attendant or anyone else.

Did my decision to not shout or cause a scene play in to the way things worked out? Sure. But I can’t imagine that screaming and yelling in an airport would have been the wisest move either. We can all just be grateful that it was a flight back to the city I was trying to get to.

This is a learning opportunity for Southwest Airlines, and all the airlines and customer service sectors – treat people as though they understand you fully and can handle themselves. Offer help if you are concerned, but never force it on someone. Treat every person with dignity and respect.

So, Southwest, the ball’s in your court. You have the opportunity to make this better and to make your staff better.

But this brings into question a larger question about how we see others. How we treat others. When we look at someone who we think is different, we immediately assume they are an “other”. Maybe it is a physically manifested disability or illness. Maybe it is a skin color or religious garment. Or a particular style of dress. It’s immediately putting someone in a category of “other”.

Problems arise when we start to treat those who we have labeled to be different than us differently. When they are treated as less because they are not the same as us.

But do you know for sure that the person is an other? Or how that otherness affects how they move through the world? It’s not a question we consider too often. I’m certain that I rarely have.

I was born with a certain privilege, that I know many others don’t have. My skin is white, my name is made up of names white people have used for centuries. Its only oddity is that my first name has two parts. I was lucky enough to have parents who supported me through a university education. I am not an other.

Well, at least until recently. Using a wheelchair service to get through the airport to protect some over sensitive nerves in my legs has gotten me a few odd looks. My new cane? A few more. I went from being a prime example of what we consider “normal” as a culture to immediate status as an “other”. My cane or the wheelchair a symbol of something you usually can’t see. And the change in the way I was treated completely changed.

Some people looked at me with pity or stared. Some made comments about ballsy it was to be so lazy that I would ask for a wheelchair in an airport. Some thought that for a young woman to be in a wheelchair or using a cane, there must be something else wrong. Something that made me no longer capable of thinking for myself.

Next time you think you need to help someone because they appear to be disabled, ask before helping. For me, doing something myself gives me the power to control my disease. For others, it is just a sign of humanity and respect. You cannot judge from a quick glance what a person is capable of. Making that judgement and taking away their personal agency is a demeaning and demoralizing act.

This post was also shared on Medium.

 

Some days you have to create your own sunshine. #onapositivenote

#onapositivenote

I have this friend Helen that I go to every time I have an idea for a project. The crazier the idea, the more likely it is that her opinion will be the first (and possibly only) one I will get before I start. She told me the Positive 100 was a great idea. Originally, it was supposed to be simple – just a photo on Instagram every day for 100 days. Somehow, I turned it into 100 blog posts in 100 days.

This month I was contemplating participating in the Wego Health Activist Writers Month Challenge. I did it last year on my other blog, FrannyCakes, and it was empowering to write something daily. The problem was, after the first few days it felt forced. I advocate for cupcakes and making the connection felt unnatural. Now that I have this blog, it would be a better fit to follow along with the challenge here, but it still felt a little out of step.

Read more

Day 33 : Illness | Positive 100 | Chronic Positivity Project

Day 33: Illness

This is Day 33 of the Positive 100, a countdown to Rare Disease Day 2014 and an exercise in being positive despite it all.

Illness is a part of life. We all get colds and the flu. Some of us get things that are a little more long term. It is not that diagnosis that determines the rest of our lives, it is how we live with that diagnosis that determines our lives.

Illness can bring you strength.

When the CRPS started, I couldn’t see a way out. I was desperate for anything that could help. I thought my life was over. I read story after story on the internet about how people lost their lives to this disease. How they couldn’t work and lost their friends. Each story was as heartbreaking as the next. I was a wreck and I was lost.

I am not sure that I have come to grips with my diagnosis and what it means for the rest of my life. I am not sure that I have come to grips with what it means for this part of my life. But what I do know is that it is not my whole life. I know that the illness has taught me that every day is a gift, even if it is terrible. I know that now life is about the adventure and not so much the party.

Illness is a terrible thing, but it can change your life for the better, if you let it.

Share the positivity on TwitterInstagram and Google+ with the hashtag #100positivedays. Also, you can sign up to be emailed a recap each week of the challenge.