Sick of Being “Sick” in the Workplace

Tonight, I literally cried over spilt milk.

It’s something I try to avoid, since when you’re sick, unfortunate shit happens metaphorically 100 times a day. But tonight, as I was taking a heated up eggnog from Starbucks out of the microwave, I started to burn my hand, and in an effort to not drop it altogether, I held onto it longer than I should have and ended up releasing my grip far enough away from the floor that it left a festive-smelling mess all over my carpet.

Even though I can be pretty closed off and tough when I’m hit with life’s trials, I had hit a breaking point after the reality of my life really came to an ugly head this week, and the only thing I could even fathom doing in the moment, as my dog licked up the disaster like he had just won the jackpot, was sob mindlessly in my kitchen over a relatively benign event.

This is a pretty familiar reaction for me. I tend to push through much worse things because I’m used to it, and then something far less traumatic will occur and it just sends me right over the edge. You’d think someone came into my apartment and chopped the tops off of my Christmas trees (yes, trees plural, because I love decorating so much that when I was faced with 2 trees I liked in Michaels last year, I decided to take them both home and I’ve loved on them ever since.)

This week was also a set of high highs and low lows. My brother got married last weekend, and seeing so much of my family and some childhood friends at one time really brought out a side of me that had been dormant for a while. I live alone in NYC, which is normally OK because people have a tendency of bugging the shit out of me. But when you don’t interact with those that you care about, and most importantly, care about you, it’s easy to forget how great you are.

I’d like to think that I am confident in myself and what I have to offer other people, but the low that really ripped me out of wedding weekend mode was another occurence of workplace discrimination. It’s something I’ve talked about from time to time in my writing and also on my IG account (@chronicmotivation), and I wish I could say that having experienced it in the past makes each time easier, but it just doesn’t.

When you wake up every day in pain, exhausted, unable to walk well or move fast enough for a shower to be feasible before your commute, it can be really difficult to hang onto a job. For better or for worse, I’ve done this for a really long time, nearly 13 years of that time being committed to my career working in hospital operations management. I like to tell my followers that working can be really healing for the chronically ill, because when you live in a society that puts the value of a person mostly on how much money they make or have, it can be pretty easy to feel worthless when you aren’t physically able to punch a 9-5 clock.

And when you ARE well enough to consider something full-time, I tend to think that it has to be a job that you are overly passionate about, because it has to be enough for you to push through the physcal discomfort and the political bullshit that comes along with being a sick person in the workplace .

Calling it Bullshit is being kind.

I have never felt entitled. I have never put my hand out for something I haven’t earned, and I have never used my illness as a card to advance or to overlook work that I haven’t gotten done. And all of that has worked out pretty well for my employers, because I don’t use a quarter of FMLA time that I’m approved for, I take so much pride in helping other sick patients that I never call-out sick, and even when I am under the weather, I make sure that my job gets done, regardless.

So when I come back from having a great time in Boston and am motivated and excited about my life, and on day one I’m hit with learning that a position that I’ve earned 10 times over was handed to a less experienced, less educated coworker, the feeling of defeat is real. I have worked at my current hospital for 6 years, and this particular coworker was hired after me and has now been promoted twice, which is twice as many times as me.

When I asked a previous manager why I was passed over the first time, I was told that I had to “be there to do the job.” I of course followed up with questioning what I hadn’t sufficiently completed as an employee, which resulted in crickets, because I’ve never not done my work. He also told me to leave the institution I work for because I would never be promoted. Again, I was not offered a reason why. Since the manager who gave me that “advice” had already resigned and was on his way out, I figured I’d give my job the benefit of the doubt and I kept plugging along.

And then more weird stuff happened.

I had expressed interest in a project management job that my current manager previously posessed, and he told me that the position was already filled. Oddly enough, 2 years later, a new person was hired into the department, and during her orientation, one of the directors announced that it had been a lengthy search to fill… you guessed it… my manager’s old role.

About a year and a half ago, someone on my team resigned. HR had just come out with a new recruitment policy that required managers to share all open positions with their staff before posting it publicly, so the process would be transparent and fair. My manager sent an email asking us if we were interested in the position as it was, and none of us were, since it would have been a lateral move. A week later, I learned that he tapped my coworker on the shoulder, told him if he took it they’d make it worth his while, and he gained a new title, and with the promotion, a raise.

When I asked my manager why I was not considered, he told me that my coworker was due for a raise, that I made more money than him, and that he didn’t understand why I was upset because he felt he had been “accomodating” with my illness.

Question for all of you reading this: when was the last time you heard of employees only getting accomodations if they agreed to forego any and all interest in professional growth? When was the last time you heard about a sick person who decided to be sick, or who wanted to have to ask for accomodations? And finally, to my knowledge, workplace accomodations are not something that are to be given out of the kindness of a manager’s heart – they are legally required as long as the request is reasonable.

Just to be clear, because this is about to get worse: I have never asked for an accomodation. Not once. In fact, since I’ve been employed, my illness has ignorantly been overlooked on several occasions, including one of the most egregious decisions my manager made 2 years ago to move me out of my operations role because because they needed a project manager. Posting that position would have cost them at least a 6 figure salary, but I guess since they didn’t think I was “due for a raise” like my male, able-bodied coworker (…), I was TOLD I would be leaving behind the job I was hired for, and apparently, leaving behind the career path I had worked 10 years to develop. As such, I was moved to a different building and have been required to travel back and forth to various sites without any attempt to acknowledge the fact that as a physically disabled person, I now have an added expense paying for Ubers throughout the middle of the day just to accomplish the needs of my new position.

When it comes to my medical appointments, I will flex my work schedule or use my lunch break to run out so I never owe time, and I get my infusions on Saturdays to reduce my recovery time during the workweek. Additionally, all of the time that I DO take for infusion recoveries is time that I pay for. No one is doing me any favors by “allowing” me to use my sick and vacation time to pay for time off that has nothing to do with rest or relaxation, and they are certainly not doing me any favors when my paycheck is docked after I run out of the time I’ve used for those monthly treatments.

Which really begs the question: what EXACTLY is the accomodation? Would they try to write me up for the whopping 3 days a month I take off for Remicade (even though I’m violently ill for a week….)? On top of it being extremely difficult since I do have FMLA certification protecting me from that situation, it sounds pretty fucking grimy for a manager to take credit for threatening anything of the sort given the circumstance.

The moral of the story is that my illness and my work ethic are not mutually exclusive, and for a conversation about my career-path to have anything to do with my manager’s perceived support ,when I’ve done everything by the book, is wildly inappropriate.

It was at that moment that I realized an idea that I’ve referenced before, and is heartbreaking to say the least. Basically, if you are a great employee with no physical ailment and your presence at work is standard, you will be rewarded with a raise and a promotion. But if you are a great employee with an illness, even if you manage it in a way that has no negative impact on your work product, your reward is that your manager will continue to provide you the accomodating that you REQUIRE to function (and as I stated above, the accomodation that I don’t receive).

If you are a sick person in the workplace, regardless of how hard you work, you will never be starting at the same place as a non-sick coworker. The way I’ve experienced it, hard work is viewed as what’s “owed” for being a burden in a truly antiquated system. So even though I have done the same or more work than my peers, I look different, and I have different needs (which my job routinely fails to meet…), and so I am not considered for a non sick-person’s reward. I am just expected to be grateful to be allowed to work at all.

Fast forward to this past week. One of my coworkers resigned a month ago – she was in a higher role than me, also undeservedly, because she was hired a year after me, and with less experience and education (and before her probationary period was up…), she was moved into her role 3 years ago without it being posted. When I told my current manager about how terrible that was for me to endure, he told me that since it was before his time as my manager, there was nothing he could do but assure me that I would always be supported by him moving foward.

So when my coworker resigned and my mananger never mentioned it to me and the rest of our team, I had a bad feeling that history was about to repeat itself.

A few weeks went by, and I went away for a long weekend, and when I came back, I heard from a coworker that the position had been handed to the person I mentioned earlier – the same guy (ahem….) who was promoted last year into a job that was created just for him. So here I am again – being slighted for a job that I’ve worked desperately hard to move into, and with no real insight as to why.

When I had my weekly meeting with my manager on Friday, I told him I wanted to be considered for my coworker’s vacancy, since surely there was no way that what I had heard was true. He never announced the vacancy, and he never posted the position. And this time, he didn’t even send out the internal email required by Human Resources. When I told him of my interest, he started shifting nervously in his seat and told me he would be moving my coworker into the spot.

He told me we could talk about it on Monday since he had a meeting to go to, which I told him I felt necessary, since I am more senior and more educated than the person he gave the job to. I also reminded him that he didn’t communicate anything about the vacancy, and that I am very interested in learning what his reasons would be for disregarding hospital policy.

He mentioned again that I made more money than my peers (which I’m sure is barely true, and also, extremely tacky to hear). Also, what do my negotiation skills upon hire have to do with someone else’s inability to fight for the salary they want? And since that statement has been said several times now, does that just mean that I will never get a raise or promotion because they don’t want to pay me any more money? If that’s the case, what exactly am I working towards, anyway?

He said something under his breath about “fit”, which is also interesting since they had no problem throwing me into covering my coworker’s maternity leave for three months without warning. I was told on a Friday that she’d be leaving in 2 weeks, and when she had her baby on Monday, I was just expected to jump in and do the job. And lucky for them, I did… and I did it well.

So how is it that my performance evaluation, which I just received 2 weeks ago, was mostly highlighting my ability to manage 30 staff and 20 doctors in our busiest medical specialty (breast cancer) for 3 months with no hand-off or preparation? How is it that I get the most obnoxious projects and tasks to cover because I am the only one who can figure it out, but when an opportunity comes along to do just that, I am not the right “fit?”

I have held my tongue for a really long time because a) I’d like to think that hard work transcends workplace bias and b) I really need my job. But to be so blatantly disregarded when I know what I bring to the table, it destroyed me to my core. I applied for a bunch of jobs (obviously outside of my company), and I’ve thrown myself even more into the side projects I’ve been working on for the past few months, because if I’m being honest, I know that it’ll be no time for a new job to start treating me like shit like all of the rest of them have before.

This is an issue that needs to get the proper attention. In speaking with disability lawyers a few years ago, I learned that much of what’s happened to me during my career has been blatant discrimination, but it would be very difficult to prove. I would need to have any of the things said in writing or on a recording, and the fucked up part is that managers know when they are doing something wrong and are very careful not to document these decisions formally. And if I or anyone tried to pursue legal action on the basis of the experiences I’ve shared in this post, it would become public record. So if I won, maybe I’d get a year’s worth of a salary (but probably not) which would result in me needing to work again soon, and if I lost, I’d never get a job again anyway, because who is going to be interested in a candidate who has sued her employer?

It kind of reminds me of a conversation my mom and I had a few years ago. She’s almost exactly 30 years older than me, and she had gone back to school for her master’s degree. She had run into a weird scenario where even though she had been a nurse for 30 years and had more than enough knowledge in her field, hospitals started changing their requirements and young girls right out of college were getting jobs with zero experience because they were probably less expensive to hire. My mom didn’t want to give up, so she decided to go to graduate school, and when she wasn’t getting any job, I told her it was probably ageism. She naively stated that it couldn’t be ageism, because ageism is illegal. But I explained to her that no one was going to cite her age as the reason for not moving forward – I could simply dislike what someone was wearing to an interview or be a raging racist and decide to pass, and I could give Human Resources the reason that the person didn’t interview well or “wouldn’t be a good fit.”

There is no way to prove that foul play exists as long as a manager makes sure to use another excuse instead.

And that’s my problem. When it comes to employers not supporting my advancement, they’ll likely say that someone else was a better fit – when what they are really saying is “we don’t want to promote the sick girl.”

Well, enough is enough. Something needs to be said, and more importantly, something needs to be done. I encourage my social media community to work hard, and to push through their pain, and to try to find a job because of the benefits it can bring to emotional (and then sometimes, physical) health. And so many of my followers have sent me the kindest messges over the years, thanking me for helping them consider that path, or for reading their resumes, or editing cover letters, conducting mock interviews, and asking a million questions so they can find out what their passion is. Because of my prompting, a whole population of people have decided to go back to school and graduate, and others have applied for and been hired for jobs – and not just jobs for a paycheck – jobs that they care about and brings them joy.

But it’s all a scam. Unless you happen to find an employer who ACTUALLY cares about your well being and understands that a lot of the workplace “norms” are outdated and pointless, you will be busting your ass for nothing. You will hopefully receive fullfillment and satisfaction like I have for the years I’ve put in, but it’s a long hard fall when you realize that that’s where it stops. You will be training peers to be your superior, and you will be assigned all of the things that no one else wants to do. Because you should just feel lucky to be an employed sick person in general, you are not to have a voice about mistreatment in by the employer.

So with that, I will be meeting with my manager this week (or will I…?) and I have very little expectations about that conversation amounting to anything more than a diologue saturated with discrimination.

I will also be forging ahead with my life plans not relating to this job, and I can’t wait for the day where I’m on the Ellen show talking about whatever creative work made me a billionaire, happy to discuss that I made it there despite the unfair restrictions I faced as someone who is chronically ill in the workplace.

Have you or anyone else you know been discriminated against by an employer or during a job interview? How have you handled it? Feel free to leave your comments below.

All my best,

xoB

 

Meta

On my way home from work the other night, I was slumped in the back of an Uber, mindlessly wandering through my phone, as a relentless batch of precipitation said it’s overwhelming “hello” to my city. Water pounded on the outside of the vehicle, and it was damp, and I had forced myself to make a slight detour to the grocery store in an effort to avoid another night of playing “food delivery bingo” with my GrubHub app.

There are many times in life that am happy for the rain: when you can cozy up with your dog in comfy clothes, ideally, by a fire, grateful not to be “out there.” That day wasn’t one of them, though it matched my sentiments, regardless.

Since I am a project manager at the hospital I work at, a lot of my day doesn’t involve interacting with other people (which I sometimes prefer…), and since I live alone, the only time I need to speak is if I call someone or talk to my dog. The latter is arguably often, but I’m not sure it really counts as dialogue.

As a result of the aforementioned circumstances, it’s not often I hear my voice outside of my body. And since much of the time, I’m thinking about a lot of things that are heavy, like feeling unwell, or how dumb other people can be, or the feeling of loss when someone leaves you too soon, the voice inside my head seems reasonably consistent with the emotions that would come from the thoughts I just mentioned. It’s tired, and padded with sighs, and could possibly audition for the voiceover for Eeyore in a ‘Winnie the Pooh’ reboot.

But when I was exiting the car at the supermarket, that wasn’t the tone that left my mouth. Instead, my “thank you!” was light, and cheerful, and frankly, alarming to hear, because it’s not something I expected when it happened. Try to picture those body-swap movies, like ‘Freaky Friday’ or ’17 Again’, where the characters are taken aback when the outside isn’t matching the inside, except I’m both people in the equation.

To be honest, while momentarily jarring, this observation wasn’t really that shocking. I have said for years that there is a very different version of me – a darker version – that exists deep down. And even though I can usually stifle it, that version never completely goes away.

What worries me though, is if I am being disingenuous when communicating in a more vibrant way. I wondered if it was possible for my thoughts to be living in an environment like the Upside-Down from ‘Stranger Things’, but the presentation of my demeanor was more likely to be found in a field of flowers from a Cymbalta commercial. I thought about it for a long time while I threw items into my shopping cart, trying to determine which affect was more “me.”

And while I’ve been learning in therapy that everything doesn’t have to be “one or the other”, and I think it’s reasonable to support the idea that both versions of myself are a part of who I am as a whole, I would like to think that my sunnier disposition wins out, which is hopefully why it’s *still* the version my body defaults to when other options are available.

Or maybe that’s worse. Maybe hiding the darker version is what causes everything to crumble, because if the foundation isn’t stable, everything else on top of it will be more likely to crash.

Either way, this might potentially be an alarming post for some people to read, because I think it’s a little unusual for someone to vocalize these kinds of thoughts. But I think the most important thing is to stay tapped into them. I think being self-aware is the the ultimate practice of self-care, because by understanding how you feel and why, you will hopefully fine-tune the external factors that impact your internal existence.

So ask yourself: who are you today?

xoB

 

 

 

Dear, Lexi

Have you ever been nervous to meet a 6-year-old? It must sound absurd, especially coming from someone who is 34. But on August 26th of this year, I got the first-date jitters thinking about meeting Lexi Townsin, who as of that evening, was the first person I had ever met with Blau Syndrome.

“Will she like me?” “Will she be confused that her parents are excited to meet a stranger in NYC?” “Will she understand why meeting her will change my life?”

I often joke that kids tend to gravitate towards me, because at a “towering” 4’10”, they usually think I’m one of them. I’m immediately accepted into their world because we can have conversations at eye-level. And while meeting Lexi was a breath of fresh air because of how radiant she was, she was onto me. She knew I wasn’t a kid – not because of some unnatural intuition, but because she wasn’t completely a kid, either.

When I was growing up, my cousins used to make fun of me, because at family gatherings, rather than playing tag or Barbies, they would find me sitting with “the adults”, propped up next to my aunts and uncles, having conversations about life as though I had already lived it. But when you’re born with an incredibly rare disease like Blau Syndrome, you, for better or for worse, have already lived it… and a lot of it.

It would be impossible to suggest otherwise. When you have to experience adult-like scenarios like swallowing pills, taking eye drops, getting poked and prodded, going to countless doctors’ appointments, and waking up in the middle of the night for a special pancake breakfast because you have to fast for a hospital procedure, it almost makes more sense when a sick child reaches greatness earlier than most.

And Lexi surely did. Anyone that knew her was so fortunate to have been blessed with that gift. I only had the opportunity to spend a few short hours being captivated by her personality in-person, but since she overflowed with wit and sass, I left our meeting feeling lighter. She made me laugh. She knew the sweet look she could flash her parents when she wanted a meal they knew she wouldn’t be able to finish, which was proven as I watched her father snack on a larger-than-life portion of fish and chips while I spoke with them about all of the great work they’ve done for the diagnosis I shared with their daughter.

Most importantly, she had a voice. And not just the voice that knows how to speak up when something isn’t right, or that charms passersby on the sidewalk, selling lemonade for the foundation her parents created out of devotion to their child – she was also vulnerable, and kind, and knew how to express herself when she was scared, or in pain, or tired. She had learned so many hardships about life at such a young age, that it’s a wonder she had any joy left in her at all.

But that’s what speaks to Lexi’s spirit. Even though so much of who she was can be attributed to how she was raised by her amazing parents, it was always so evident that they felt they were the lucky ones, having a daughter whose laugh scared the clouds away each day. I think it’s pretty common to see siblings fight, especially at the ages that Lexi and her older brother, Felix were. But witnessing their bond, again, showed that her affect transcended any social norms that could be assumed of a 6 year-old.

After meeting Lexi, I had envisioned my future relationship with her. I pictured international phone calls when she was struggling to adjust, or confused about dating, or if she simply needed an ear when she had any concerns about life that I would have hopefully figured out by the time of her asking. I wanted to give her the understanding that I so desperately could have used at her age, and frankly, could use now. But most of all, I was excited to watch her grow. I decided that if someone so young was already such a bright light, how lucky the world would be to have her in it.

And it was.

Even though it’s an understatement to say that Lexi’s time on this earth was cut short pre-maturely, it’s pretty unbelievable to think about how many people felt who she was, even just by watching her videos. Social media can be a sterile place, but somehow, Lexi managed to break that barrier as well, with her touching attempts to raise awareness surrounding her circumstance.

I’m not sure why I’ve been afforded the opportunity to be granted more physical years than Lexi, and as I sit here, living with the same medical condition plaguing my body, the anger, and disappointment, and true heartbreak are overwhelming. During a time where not much makes sense in my life, she did. In a quick encounter a mile away from my apartment on a routine weeknight after work, she helped me understand why people don’t generally see my physical deformities the way I once saw them, and for the first time in a long time, I didn’t feel so alone.

It’s hard to reconcile why something so terrible had to happen to someone so special. Maybe we won’t. And I’ll refrain from saying the cliché thing, about how we can “learn” from Lexi’s passing, because I’m not yet in a place to accept that this is our reality, or that there is anything we can possibly gain from her absence that is of greater value than being able to get more time.

What I can say, however, is that for reasons that I’ll probably never know, I am still here, and I am still fighting this unfortunate illness, and I will do everything in my power to continue to forge ahead with the grace, and warmth, and valor that Lexi applied to her courageous daily fight being a patient with Blau Syndrome. And now, as I’m writing this from the “comfort” of a familiar Rheumatology waiting room, I’m thinking of Lexi. And even though the hole in my heart is great, I can picture her toothy grin cheering us on from wherever she is, and reminding us that while it might be difficult right now, tomorrow is only a day away.

xoB

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Day 3 – The good, the bad, and the ugly cry.

Mornings are usually the most difficult time of day for me to ambulate. Since I have arthritis in every joint in my body, there is kind of a “wake up” period before I feel comfortable to move around and start the day. Because of this, I was really concerned that there wouldn’t be a “day 3” on my mission, but something really cool happened.

After my medicine kicked in, and I started to wake up a bit, I naturally felt pulled to sit down at my makeup table.

If you’re reading this and you follow me on Instagram (@chronicmotivation), you probably know that I’ve been working on an apartment decor overhaul for the last year. In that time, I had my eyes set on this beautiful white-laquer desk from CB2, but I couldn’t buy it initially because it was really expensive, and the delivery fees were out of control. After scouring craigslist for months, I ended up finding someone who was selling it for less than half of what I would have paid through the store, and I ended up bringing it home in mint condition within the hour.

With the new furniture addition to my den/get ready room/writing area, I was inspired to go out of my way to organize the drawers in the desk in a way that would be conducive to me actually using all of the makeup I have. I think like many women, we tend to have 24 blushes and 36 eye shadows, but since it might be thrown in a makeup bag, or even some kind of storage bin, it’s hard to see all of the options that are available. I’ve always been really big on keeping things visible in my home, because I believe that when you start to “store” things in a place that’s hidden, you forget quickly that they’re there, and you might as well not have those things in the first place.

I’ve had the makeup display setup for a couple of months, and I probably only used it twice in that time. But there was something to be said this weekend for being able to simply slide open the drawers and see everything in it’s place, and to have fun with the options laid out in front of me. Remembering the joy that it brought me, I was excited to sit down before work this morning and have some fun.

Day 3 makeup dog.jpeg

I went to work and did my thing, and then I decided to make a second trip to DSW to see if the location near my job had some other choices. It probably sounds like I’m a shoe maniac, but I promise I’m not. Buying shoes that are flat, that don’t look like they belong in the senior center or on a 5 year old, are comfortable, and that I can afford, seem a less likely find than a unicorn directing traffic on a Tuesday.

Even though I didn’t get exactly what I was looking for, I did up leaving the store with some cute new compliments to my collection.

 

And then, I did something fantastic. Part of this journey, since I’m sort of writing the rules every day as I go along, is to really challenge myself to step outside of my comfort zone (physically and mentally…), and to check something off that I either have been meaning to do for a while, or doing something in general that breaks up the monotony of my “wake-up, go to work, eat dinner, tv with the dog, sleep” routine. And today I really accomplished that.

Over the weekend, I had come across this really cool dessert place called, “Sweet Churros.” It basically is a homemade churro place that adds different toppings and some ice cream choices. Unfortunately, I couldn’t bring myself to pay for such an expensive cab downtown from my home, so I figured I would wait until I was in the area during the work-week. Even though I felt pretty crummy because it’s been really humid, and I was exhausted after working all day and walking around the shoe store, I forced myself to put “Sweet Churros” into the Uber destination and I just went with it.

The actual place would have been easy to miss if I wasn’t looking for it. I ordered a churro covered in Fruity Pebbles cereal, and had it sitting in a cold cup of vanilla soft serve. I was initally worried that I would be covered in the treat in a matter of seconds once it met the summer sun, but whatever this place is doing is working out perfectly, because I was able to enjoy my food without wearing it.

Day 3 churro.jpeg

 

Even though my trip was successful, something snapped inside of me on my ride home. I got a lump in my throat, and all I wanted was to be on the other side of my apartment door so I could cry my eyes out. I’m not sure if other sick people can relate to this, but sometimes it feels easier to just go along with the status quo instead of reaching certain milestones, because it shouldn’t be a big deal for a 34-year-old to get ice cream on a hot day. I was so grateful to be able to follow-through with my detour, but it also took so much energy out of me that I fell asleep about 30 minutes after I got home.

What kind of life is that?

Anyway, tomorrow is another day. I have some other things contributing to my shift in mood, but I really hope that I’m able to leave that sadness in today’s history and feel a bit more hopeful for a better tomorrow.

Until then.

xoB

Day 3 work clothes

Day 2 – Summer Feet.

I wasn’t really sure how today would turn out, since all things sound great for about 24 hours. I thought maybe I would wake up this morning and tell myself, “well, that was fun. I’m just going to lay in bed all day instead.”

But I didn’t.

I think it definitely helped that my hair was still looking nice from last night’s shower. I was able to just brush it quickly, and a good chunk of my get-ready process was done.

It was really, really hot in NYC today. It ended up working out well, though, because I had a dress in mind that I wanted to wear, and the weather supported that decision. It was really awesome to grab an article of clothing from the closet that a) still had the tags on it (are you catching the theme with that, yet?) and b) I could actually consider since my legs were smoothly shaved. Many of you might be thinking, “but Becky, it’s the summer – you have to at least keep up on that, don’t you?” And the answer is, “no.” I have blonde hair, so I get away with whatever I can get away with.

With that said, it was also really nice to get a pedicure today without worrying about the nail girl getting a rug burn on her hands. There’s a first time for everything.

Day 2 white pedi

(Don’t mind my summer feet. Sum’er here, sum’er there…).

I think I’m going to have to consider buying some more cute things to wear over the next few weeks, since nothing in my closet seems to be safe from being pulled out and worn. And honestly, one of the things that has kept me excited about continuing on this journey is being able to wear new things – feeling the joy of running around in an outfit that hasn’t seen the light of day.

An observation that I had today that’s pretty similar to yesterday is that I was noticed for the clothes I had on. I went to the pharmacy, which is a very normal trip for me, but today, the salespeople paid attention to me differently. I was barely inside the sliding glass doors before some girl yelled across the aisle, “I love your dress!” When I picked up my Rx, the pharmacist gave me a look that sort of read like, “who are you, and what have you done with the lump of a person I normally see here?” But the best and most blatant reaction to my dress (boobs) happened when I was at the checkout spot. As the guy was ringing up my items, some other employee a few registers down took some people out trying to get to my lane, just to jump in front of my cashier to ask if I had a store rewards card. Swiping my card took $10 off the total, and then I blinked and another $15 came off the total after jumping jack flash waived some paper in front of the scan gun. “This is another coupon for you today.”

OK, so a few things. First of all, I feel like I’m playing out some forgotten scene from Beauty and Beast, because I’ve been in that Walgreens nothing short of 896 times in the last 7 years, and no one has ever offered me a discount that I didn’t ask for. In fact, half the time they can’t even get their shit straight enough to give me the discount that I actually inquire about.

Next – society clearly favors the beautiful (again: boobs).

I have some anxiety bringing this plan into the work-week, because I have a lot less control over my time since I spent the majority of my day on someone else’s clock. Mornings are really hard for me, and I usually feel accomplished if I get to my job with something other than pajamas on. To consider being “done-up” for the next 3 weeks feels daunting to say the least.

But maybe – just maybe – I’ll surprise myself.

xoB

Day 2 Blue Dress

 

Day 1 – Empower

As part of my 21-Day challenge to be more presentable in public, I will be documenting things that I’ve noticed that I might not have experienced if I hadn’t embarked on this journey.

Since I normally spend my weekends lounging around and recovering from the work-week, it took a lot of mental prompting to get me out of bed and into the shower. I slept late, watched some movies, and enjoyed some downtime with the dog.

But since I really care about moving forward with my plan, I pushed myself to follow-through, even if it was with a late start, because any progress is better than none.

I get a lot of anxiety at this point about bathing. I don’t even think it’s the actual act that scares me as much of the discomfort I feel just IMAGINING the act. When you are physically disabled, everyday things can feel really overwhelming. Taking off clothes, stepping over the side of the bathtub, turning on the water, lathering up the shampoo, rise, applying the conditioner. Shave, soap up, wash face, rinse conditioner. And that’s only the beginning. After that comes brushing through a full head of hair, eventually blowdrying, drying off, getting dressed, and if you’re feeling like a real champion – makeup.

I always really feel great after taking a nice long shower, and I have had a bench in the tub for the last 10 years (which is a total game-changer if you have issues standing). And while I initally thought, “OK, I can do this!”, I woke up this morning completely zonked after sleeping through a post-cleansing coma. This is also what contributes to me being hesitant to committing to plans, because before I even get to the event, I need to take a nap.

I knew that I wanted to go out into the world since my hair and makeup were done, so I put on a flowy (read: comfy) tiered, off-the-shoulder dress from Express that I bought to wear to my mother’s graduation in May. I loved it when I wore it back then, and honestly, if I hadn’t worn it yesterday, I might have watched it sit in my closet in a quasi-retirement until it didn’t fit me anymore or my style changed.

At about 8pm, I hopped in an Uber and went over to DSW. Because my feet are deformed, shoe shopping is usually a giant pain in the ass. But I figured it was late, and the store would likely be pretty empty, and it always feels better trying things on when you don’t NEED to find something for an event. I always seem to get luckier in that scenario.

As I mentioned in my original post about this challenge, there is a component for me that is interested in seeing if it’ll affect anything for me socially. But what I didn’t consider was that attraction doesn’t discriminate, and I ended up winning the attention from a woman who I can only guess was on a day-pass from the looney bin. Her process of introducing herself included asking me if I knew my dress was so long, and when I said, “yes…”, she said, “of course I know you know, but it’s dragging behind you and I want to know why.”

“Because I’m short. My dress is long and on the ground because I’m short.”

I don’t know if she expected me to melt into a ball of insecure tears or if she was hoping to get a lawsuit out of me after punching her in the face, but I sort of regret not resorting to one of those options, because my kindness and patience with her bizarre character resulted in her spending the next 20 minutes following me around and asking me to give her advice on the boots she was trying on.

After walking around for about an hour and a half, I left with a fun new pair of Keds (which are cool again, apparently, and at “cool again” prices…) that have the word “Empower” printed on top in rainbow colors. It’s a little particular for my taste, but given that I think I’m going to need an extra little shove each day to accomplish my 3-week goal, I thought that it wouldn’t hurt if my shoes were cheering me on.

Day 1 - Empower shoes

On my ride home, I was thinking about what, if anything, felt different on day 1. The first thing that came to mind was being able to smell Central Park, even if it was from a cab. The temperatures have been a little more mild recently, and though it was still kind of humid out, it was nice to drive home with all of the windows down, with my newly cleaned hair blowing in the wind.

It also occurred to me that I had written a blog post for the first time in about 9 months, had made use of my new desk that I’ve stocked with all of my nicely organized makeup, and noticed that my “comfy” clothes felt more comfortable than ever, when changing out of the dress I had been wearing all evening.

I have always felt that contrast is an important part of life. It’s why I believe I can tell when someone in the chronic illness community online isn’t being authentic about their experience, because anyone who has truly suffered the way that many us have, would also be able to appreciate much more than what I see being posted about each day.

To me, people who are not able to be grateful for basic things have not experienced pain or loss to the extent that makes them aware of how lucky they are when terrible things aren’t happening.

And with that, on to day 2!

xoBDay 1 Fkowy Dress

21-Day “Beauty-Binge”

I haven’t felt like myself for a very long time. In fact, I’m not even sure anymore of what my “self” looks like at it’s core. There are pieces of me that have stayed intact because they are so crucial to my existence, like compassion and intrigue, but the rest just sort of feels like it’s been on auto-pilot.

A lot about being a sick person is doing things every day that you don’t physically and mentally feel like doing. It’s getting out of bed, bathing, contributing to society in some way (going to work or school, for example…), and it’s checking off items on a list that prevent you from failing at life completely. Do laundry. Pay rent. Feed the dog. Feed yourself. Even typing this out feels monotonous. And what I’ve learned is that you can go into a downward spiral quickly if you aren’t aware of how unintentional your habits have become.

When you are chronically ill, and these things that you don’t feel like doing still have to be done, there is a lot of energy that gets used just accomplishing these and other basic tasks. I have always had a theory that it takes more energy to do the things we don’t want to/feel like doing than things we want to do, because we also have to compensate for the lack of motivation that exists when a general interest or desire isn’t present to push you. So when we’re just getting by, and we’re trying to make it through each day, what happens to all of the expendible activities that we simply don’t have the energy to accomplish?

What happens to our joy?

It’s sad, but because I live alone in NYC, I very much depend on going to work each day so I can support myself. I don’t think that this is a different fact than other people who have to work to survive, but other people aren’t completely depleted just getting ready in the morning. For me, there are many days when I have to pick between going to work and taking a shower. Other people might argue that both are non-negotiable, but if you know that after you’ve hit a certain wall that nothing else will be possible, you have to prioritize the things that will immediately cause big problems, and that might come at the expense of things that seem unfathomable to put off.

So then as your health declines, you start to become a robot in a sense. You start to feel like everything is a race against time, trying to get the bare minimum done before your body closes shop for the day. And when you’re living in that mentality – survival mode or bust – it feels like anything “off the list” so to speak, feels like a luxury. It starts to feel like the things that you once loved are very much out of reach, as long as you want to stay afloat in the areas that truly require your attention.

But that’s no way to live your life, when there’s no “living” involved.

I have always had a pretty extreme personality. I’m usually either completely invested in something or it practically doesn’t exist. So when I started to go down this path of maximizing my time, other things were sacrificed that I couldn’t have anticipated in the very beginning. You figure that small things can be skipped, but small things add up.

So with that said, I decided I’m going to spend the next 3 weeks tackling a small piece of the puzzle. I’ve heard many times through the years that it takes 21 days to make or break a habit, so I will be spending that many days assigning some time to doing my hair, doing my makeup, and putting together an outfit that makes me excited to walk outside my front door. I want to feel put together. I want to feel approachable. I want to feel worthy of being seen.

At first pass, it might seem that this is a superficial challenge that I have set my eyes on. However, I think there is a lot to be said for how we present ourselves to others. I don’t think that a full face or big hair is the reason others should value us, but if we aren’t putting any effort into how we look every day, it could be perceived by others that we don’t value ourselves. And if we send the message that we don’t value ourselves, how can we expect others to think we have value?

This is basically a social experiment.

We have clothes in our closet that we reserve for special occasions – I would like each day in the coming weeks to be special. I also am interested to see if my committment to something so basic trickles into other aspects of my life – will I be encouraged to try new things, or be more social, or get to work on time, simply because looking nice on the outside makes me feel better on the inside?

I will be journaling about my experience and will be tracking things that are seemingly unrelated (i.e. my weight) – because my gut tells me that deciding to make my appearance a priority will open up new doors an opportunities for me, even if they are only benefits that I am able to see.

This mission that I am about to embark on is not about other people. It’s not about being attractive, and it’s not about pretending like I’m not sick every day.  In a way, it might remind others that even though I am sick every day, I’m worth spending time on. With this journey, my goals are pretty simple. I intend to live with intention. I want to find purpose on purpose. And I want to teach myself and others that I deserve to be loved by first loving myself.

Ultimately, there is absolutely nothing that I can lose by doing this. All I know is that I have no idea what else I’m supposed to do, other than to fake it until I make it. It’s a notion that I’ve tried in the past and in my recollection, has had a pretty high success rate. Also, I think it’s important to mention that for me, even though it will be physically daunting to accomplish this level of vanity, this is something that I’m actually interested in doing. I think it’s fun to play with makeup. I love my hair. And I also appreciate fashion. The only thing that I have left to do at this point is to do these things that I actually enjoy.

If other people are inspired by this and are feeling a bit lost in life like me, I hope it’s also understood that this is MY version of a “beauty binge.” I am not trying to perpetuate the idea that women are only beautiful if we have makeup on or that we have to be an “enhanced” version of ourselves to be valued in society. Beauty to someone else might mean drinking a ton of water to promote glowy skin, or it might mean sleeping more to prevent bags under the eyes. I only promote that we each determine what feeling beatiful looks like for each of us, and that we don’t discount the impact that ignoring that feeling has on other areas of our life.

So here goes, my dear friends.

All my best,

xoB