Working It Out

Hello, hello! 

Below is another great video from our friends over at Shift.ms that talks about the challenges of MS in the workplace. They put together a great list of tips, too. Have a watch.

Take care!

Christie

Do you live a double life?

It’s hard living with a diagnosis of Multiple Sclerosis and even harder deciphering when to “come out” - who to tell, how and when. For me, telling my loved ones is easy and I’m very fortunate as I’ve read stories about how many MSers struggle with this, not getting the right level of emotional and physical support from friends and family. I feel lucky.

At work, however, I do not talk about my life with MS. So I’ve chosen to live a double life. By day, I work in an office (think Dilbert) amongst colleagues who do not know about my health status. By night, I live with MS amongst those who love and support me. 

It is exhausting being a secret agent. Hiding out in empty cubicles to make phone calls to my neurologist and discreetly leaving early for infusion, MRI and doctor appointments can be super difficult to cover up but I have chosen to hide my mission: do not reveal the MS diagnosis at work.

Read more about how challenging it can be to ensure my cover isn’t blown on Multiple Sclerosis.net. How has coming out with your diagnosis been with your friends and family? Work? Or, do you live a double life like I do?

Best always

Agent C.

It’s exhausting being a secret agent

I remember sitting at piano lessons when I was a kid, announcing, “I want to be a CIA agent” right before kicking into a Bach Minuet. My piano teacher said, “Oh Christie. That’s all very dangerous!” At the time I was watching a lot of James Bond movies with my dad and I believed this would be a great way to make a living when I got older. I could save the world while leaping in the air, hanging out of spiffy gadget filled cars driving at high velocity speeds and swinging out of tall buildings capturing all the bad guys.

Well, turns out I did grow up to be a secret agent. It is not nearly as exciting as I dreamed about and it is utterly exhausting.

Allow me to explain.

By day I am a number cruncher for a major retailer and, by night, I am someone who lives with MS. I am not completely out at the office with my diagnosis and the only ones I’ve told include my boss and two trusted colleagues. Yet the espionage work has really started getting to me. The discrete phone calls, rendezvous in the middle of the day and disguising my disabilities. I even took a phone call in my car the other day, to chat it up with an MS buddy. My car has tinted windows so I was able to stay undercover, if even for fifteen minutes. It seems that I am constantly managing The Secret, to ensure my office mates do not find out about my health status.

At what point should I blow my cover?

I believe that I haven’t blown my cover yet. Here’s another great example of some stellar spy work. Last month I encountered a colleague in the hallway while trying to quietly leave the office for one of my monthly Friday afternoon Tysabri appointments. I am pretty sure I was wearing the standard issued dark sunglasses. Okay, okay. I realize that this is not very discreet, navigating through a cubicle filled office space while wearing sunglasses but even spies make mistakes. As we passed each other, my colleague said to me, “Lucky.” Success! I tricked him into thinking I was leaving the office for the day, for some fun filled weekend activity like snow boarding in the mountains or driving out to Vegas or camping by the ocean or jetting off to San Francisco. Little did he know I was on my way to the hospital to sit in an infusion chair for two hours while the big T flowed through my veins.

To the best of my knowledge, my MS remains an in tact secret and no one at the office knows. An incredible feat since I was diagnosed over two years ago! This means that I am either doing an amazing job blending in and the government should seriously consider hiring me for some spy work or I am playing a dangerous game with my psyche.

And, like all good secret agents, I must not panic.

Difficult, I know, especially when you get vertigo and double vision during a business meeting. This happened one afternoon, during a meeting with about ten analysts and statisticians. I told myself, as I began seeing about twenty calculators spin around the conference room, “Just blend in, like any good spy, while they talk about their findings and insights and pray that they do not ask you any direct questions.” And I did. I just sat there, calmly, and listened to everyone, nodding my head once in a while in agreement as I waited for the spinning to stop. “Whew!” It finally did pass, twenty calculators reduced to ten, and I managed not to attract any attention.

You can see why I am started to get tired of all this, right? I often come home to utter exhaustion, plop on the couch and just chill. I am convinced that this under cover work is the culprit of my fatigue. It is often on said couch that I ask myself, “At what point do I just blow my cover, let “them” catch me and relax about who I am? I am a number crunching photographer who loves riding her bicycle really, really fast and happens to live with MS?”

I am sure I am not the only one who struggles with being a secret agent. How about you? Are you out at work with your MS diagnosis? Any good stories you want to share? I would love to hear from you.

Hope you’re well and feeling okay.

Best,

Agent C.

P.S. And, if you are a co-worker of mine, reading these words, do swing by my cubicle one day. We need to talk.

Marlo Rocks!

Every time I read something written by Marlo Donato, I am reminded that she is indeed one of my MS heroes. She should have a cape, preferably one designed by Donna Karan.

She recently posted five reasons, one a day, Monday through Friday, on why companies should hire folks with multiple sclerosis. Her list is great! They range from cost effectiveness and time efficiency to delegating and sharing knowledge.

Cheers to some great articles! I, for one, appreciate the message of empowerment conveyed in each of these five posts. Thanks Marlo!

To read the articles, check out her blog here: http://marlodonato.tumblr.com/

Ciao for now.

Christie

When is it Time to Get the Blue Placard?

I knew it was only a matter of time before I made a very important decision. To do the handicap placard or to not do the handicap placard. That is the question. I have been wrangling with this one for some time, always coming up with reasons as to why my perfectly (dis)abled body does not need to be rescued by a privileged parking space. That’s how I see it.  Here’s why.

First, my symptoms are never that bad. At least that’s what I’ve always told myself. I can park in any spot in the parking lot of Bed, Bath and Beyond and capably walk to the front door. This always leads me to my second point, which is that I really do not want to take a handicapped spot away from someone who needs it more than me. How on earth would I be able to live with myself if I drove my car atop the asphalt spot painted with the universal disabled symbol and actually took it from someone else? I am not sure I could live with the guilt of stealing a spot when I feel perfectly fine. This line of thinking always ends with the forever silent, unmentionable realization that I am a disabled person who might need assistance one day too. 

Nope. Not this MSer. My third point I always think is a strong one. I need the exercise. Walking. Walking is good exercise. The farther out I park the car, the more exercise I will get. I often reason with myself. I do not need to shrink my already limited exercise routine by decreasing the steps per minute that would come from parking so close to the entrance of the mall. Ha, ha! Good one.

Lastly, the place where I need assistance the most is at work yet I adamantly tell myself that I am not ready to come out with my diagnosis to my office mates. Parking in the handicapped area will clearly force me out of the MS closet. I know what you’re thinking, ‘o readers of mine. How much of a secret could it really be if I write publicly on this blog? Minor detail. I remain inflexible. I cannot get a handicapped placard. Everyone will notice me stepping out of my car parked in the blue zone right in front of the office building entrance. It will be so immediately obvious. There is no way to avoid it. Everyone knows what kind of car I drive and they do not have a clue that I live with MS. I always ask myself questions. How is this going to work? Am I ready for this or should I dream up a story that I am recovering from a very serious bike accident? People will believe me, right? Yes I realize that keeping up with a story like this will be difficult and has the potential of getting completely out of hand as I will be forced to describe every elaborate detail of my crash. Besides, I can’t wear a fake cast forever. On the other hand, parking is so limited at my office that many of us are forced to park on a dauntingly steep hill that is an exercise routine all in itself. 300+ steps from the office front door to the top. I counted one day. I still conclude and tell myself: more points to add to my third reason above if I don’t get the placard, right?

This all changed with my recent relapse. Just last week my MS took me by surprise and rewarded me with new numbness, from my waist down. Not full numbness but enough to give the impression that I should probably stop drinking at noon. This is when I decided it was time. I wrote it down on my task list: fill out DMV form for disability placard.  I will let you know how my first parking experience goes when my pretty blue placard arrives in the mail. Stay tuned.

In the meanwhile, I am sure many of you have had similar experiences. I would love to hear from you, to hear your story. How was your experience in getting the disability placard?

P.S. If you live in California, you can fill out the “Application for Disabled Person Placard or Plates” through this link:  Application for Placard.

Best always,

Christie

Personal Health Disclosure - Do You or Don't You?

WEGO Health recently polled the health activist community about personal health disclosure. They asked folks last month to “Finish This Tweet” on this important topic in 140 characters or less.

“I do/don’t disclose my health status b/c ______________”

Check out the image below to see what some of us had to say or click here.  This sparked some good conversation and folks really opened up.

My response? I don't disclose (at work) because I don't want to be misunderstood. You know I am going to ask you to share. Do you or don’t you disclose? Curious minds want to know. 

Best,

Christie

Courtesy of WEGO Health Blog. 

Staying in work with MS - Marlo Donato Parmelee

I just love Marlo! This is a great video she made on working with MS. As many MSers know, it can be challenging to "come out" at work. I have not told my employers that I was diagnosed with MS (unless, of course, someone at my office is reading this very post right now then the cat's out of the bag). Yet, if I watch this video over and over, I suspect I will find the courage to talk about my MS more freely at work. Marlo is super strong!  I am always so impressed with her strength and dubbed her one of my heros after reading her book "Awkward Bitch", in which she talks a lot about her experience with staying in work with MS. What a super hero!


Best,
Christie