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To the Sick Moms Worried for Their Children's Future

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Sometimes, for my writing gigs about parenting, I feel like there are two categories of mothers in this world. It’s probably because I write for both groups. (I’d like to write for dads too, but I don’t relate as naturally to “dad stuff.”) When I see a mothering issue, my writerly mind starts to turn it over from the points of view of two types of mum: the healthy mums and the sick mums.

Of course, it’s much more complex than that because all mothers face diverse challenges every single day. Many mums we see as being in the “healthy” camp are, in fact, carrying interior burdens they would cringe to let out into the daylight of public opinion – I get that. There’s a huge crossover between these camps. Life is an imperfect art, and really crap things happen all the time. You might be in the midst of creating the most intricately perfect artwork on the canvas of life when it chucks a whole can of turd-brown paint all over your work. It happens regardless of who you are, the category you identify with and whether or not the universe recognizes you should have exemption. Your beautiful work of art might not get up on the gallery wall – at least, not until it’s finished. We all carry scars and feel the pain of fresh wounds. We all have reparation work to do. The bad stuff happens to everyone everywhere, even if it doesn’t look like it.

The other day, I picked up one of my kids. I recognized the car in front of me as being that of my friend. I didn’t get out of my car to say hi (although I wanted to, I am learning to look after my limitations better so I can manage to stay upright longer). She knows me and she knows about my illness, so I sent her a message on my phone, from one driver’s seat to another. Hello, beautiful! I tapped. And she really is bona-fide beautiful. This mum is the sort of mum other mums look at and their insides sink. She looks perfect. A tiny little frame, perfectly groomed hair and face, clothes you wish you had hanging in your own wardrobe… if only they made them 10 sizes bigger! She’s got a few degrees, a chic home, bright and beautifully-mannered children – oh, and that car rear I am staring at? Really nice, thank you very much. The lady’s got class – and the means to show it.

And in truth, I really like her in spite of all that, you know? (Wink, wink.) She’s personable, approachable, interesting and funny. She’s a genuinely lovely person. She slid elegantly out of her driver’s seat and came to chat with me at my window. I was struck by her beauty. Sigh. Suck in your tummy, Rach. Put on your smile. I wonder how she really is?

How she is, really, came up about two minutes into the conversation when she revealed she is facing not one, but two major health crises. I stared at her flawless complexion and thought about the torment that must be happening behind that beautiful face. Her vulnerable eyes are shielded by reflective sunglasses. I feel so lost as to how to comfort her. Even though I know it. I know that torment. The ache of the sick mother. The loneliness of facing your own mortality in the mirror. The frustrations when the sick stuff leeches into the mothering stuff. It’s horrible. Unfair. It’s life.

My heart is tuned toward the mums who are mothering while sick. It’s like I can hear them, sobbing in their wardrobes, hiding from their children. I see the images that haunt their nighttime dreaming, their fears unleashed in a scape not limited by reality. I feel their thumping hearts as they consider the most awful possibilities. A final severing of the metaphorical umbilical. The thought of life without them in it. Carrying on. Of some other person potentially filling the dent in their bed, their place in the world. The sick mothers thinking about their babies, as much a part of them as their own pulse and breath. How can you even begin to prepare your babies for a world you may not be in? And how can you do that without suffocating them in your arms and trapping them in your presence? How can you step away from the feelings to balance your mothering when you live in fear?

There is so much to be afraid of. But nothing we can do will change our truth. Big life stuff is an irrefutable fact. It’s just part of the shape and texture of the life we happen to be living. It’s real. It’s here. There is freedom in speaking it out. In owning it. And there is relief in surrendering expectation to a new paradigm. Because being sick gives its own gift of perspective and gravity, there is something quite extraordinary we get to tap into. We get to mentally jump off the expectations of perfection. We get to let the pressure drop. We get to focus on the things that matter most of all – if we are prepared to leap into a new way of viewing our crappy situation.

My mother heart projects forward into the future. I look at my babies – so precious. I think of the time I have with them. The length of which no person knows. As unpalatable as it is, the amount of time any of us have is limited. I think of the quality of that time and I know my purpose. I want to help my children become excellent adults – beautiful world citizens who are kind, open-minded, thoughtful and flexible. I want them to make the best out of the crap life hands them. I want them to make our world better because they are in it. And there is no more artful way to do that then to teach them how to respond to adversity with grace. How to take even small opportunities and run with them. I’m a sick mum. And it is precisely because I am sick that I have a meaningful context and opportunity to help my children be exceptional people.

I resolve to answer my fears with determination. My situation is a chance not every mumma gets. I know the value of my time and the importance of my role. I will teach. I will nurture. I will do these things imperfectly and sometimes flat on my back. I will do them with love and an eye on the people my children are becoming. In every adversity there is a teachable moment. We can do something beautiful in every ugly, uncomfortable moment. We can guide our babies into fulfilling lives.  Show them how to shore-up, talk about it, get through. How to keep their eye on the value of every given moment.

Don’t waste it, sick mummas. My sisters-in-arms. Embrace it.

One moment and one day at a time.

Leadphoto source: Thinkstock

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When Your Friends Don't Support Your New Physical Limitations

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“Don’t take it personal,” my fellow social worker friend said, “You are entitled to your feelings, but the truth is some people are limited in their ability to understand and empathize.” Her words not only provided the validation and empathy I needed but also a difficult lesson to be learned about individual and respective limits.

My close friends and I were planning a trip together. We had been talking about this trip for months and we were finally putting it all together. They know I struggle with my health, but like many people in my life they are unaware of the true impact chronic illness has on my day-to-day. When I see them, I try not to discuss my health issues too much. Like many people living with chronic illness, I wear a mask when I am with friends and family. A mask that laughs and smiles and hides the truth about the debilitating pain and discomfort I am constantly in. I do it for them and I do it for me. So my friends really don’t know the extent of how illness affects me. They know my diet is very restricted and I am unable to do a lot of strenuous activity but they are unaware of the impact chronic illness has on every part of my life and my daily functioning.

Before solidifying our plans I called them to explain that traveling can be difficult for me. I wanted them to know that when I travel I need to rest and can have days where I am unable to do much. I made sure to tell them that they should feel free to leave me and my husband behind and if they wanted to do things I was unable to, they should feel free to go on their own. They both acknowledged my concerns and agreed that it would be fine. My husband and I continued planning and my excitement continued to grow as the night went on until they texted me later in the evening. The text explained that they thought it would be best if we each just did our own thing since I would be needing constant rest and wouldn’t be able to eat many things. They thought the trip wouldn’t work out with all these issues. Their words broke my heart. They may not have intended to, but in one text they brought up all my insecurities, all my hardships and vulnerabilities about being sick.

I cried and felt the panic seep in. That voice in my head that tells me I am a failure because I can’t work full time, that tells me I am pathetic when I can’t get out of bed, that asks me why I can’t suck it up and keep going, that can’t accept being sick, that can’t accept the limitations of this body, was loud and clear. Chronic illness does this to you. It changes you, not just physically but mentally. It can make you feel depressed and anxious, worthless and broken.

I have grieved what once was. I used to be healthier and full of energy. I used to be able to eat whatever I wanted, do whatever I wanted, push through and keep going. My friends remember me that way. But now this body is limited and my life is limited. It took a long time to accept this, but I am finding strength in my fragility and lessons in my pain. It was difficult to adapt to my new limitations, even more difficult for my family to accept them. It really should not have been that surprising to have close friends struggle with them too. When my social worker friend, in all her wisdom, told me not to take it personal, she showed me that I can’t let these interactions define me or knock me down or minimize my growth. It was hurtful for my friends not to support me, but in the end it was not about my limits but about their own.

With chronic illness, there will be people who hurt you, misunderstand you, judge you, doubt you, say the wrong thing, make you feel small even without intending it. Do not take it personally. You may be physically limited, but they are limited in their ability to understand and empathize; they are unable to see past their own experiences. They have different hardships not related to illness. They walk in healthy bodies and live healthy lives; their difficulties do not reside in their bodies. They experience physical pain but not like you do; it is not their companion, it is not their shadow. They are unable to comprehend the realities of your life and therefore easily dismiss it as a nuisance or an idiosyncrasy.

This does not mean they are not your friends but it does mean that your friendship may be limited. It does mean that their limitations may not let you lean on them for comfort and may keep you from sharing your reality with them. More importantly, there will be others that will understand you; others who don’t know what it’s like but will still empathize and see things through your eyes. Those are the ones you look to for support and share your struggles with. Those are the ones who see your limits, recognize their own and know how to work around them.

You will lose friends, you will gain friends, but what matters is that you never lose yourself. Our limits do not define us, but they are a part of us and we must recognize not just our own but the limits of others as well.

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Maybe It's Time We Broke the Rules of 'How Are You?'

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It’s a routine we all know:

“How are you?”

“I’m fine, thank you…”

I have taken issue with these statements for a while now. As far as I can tell, social norm is the key shaper of this question and response, this little game of politeness we play. I’ve tried bending the rules before, because I was sick of feeling like I was lying with my response, and because I wanted to find out what would happen.

But answering outside the norm, in my experience, mostly throws the other person off balance. Takes them aback. Or perhaps, depending on your answer, elicits a superficial attempt at validation, generally skimmed over to the next topic. Because really, the original question is just a formality, an extension of a greeting or even just a greeting replacement. Sometimes, you’re even walking past each other when it’s said, and just keep walking anyway.

So. How am I?

Honestly?

I am depressed, anxious. Both. I have both, they’re always there. One may be more prominent at a given time, or perhaps they’re both equally at large or under the surface.

I am confused. I have recently started figuring out this roller coaster called “feelings,” after a lifetime of emotional repression, suppression, and numbness. And I’ve just been diagnosed with complex post-traumatic stress disorder (PTSD).

I am fatigued. No, not tired. Fatigued. I know there is a difference, because I was tired from pushing myself too hard for years, then with a mysterious illness came debilitating post viral fatigue. I was just getting the hang of that when a set of sleep disorders took over. Fatigue is tired on a whole other level.

I am sore. My musculoskeletal structure is all shonky from some unnamed inherited condition, and I have IBS and gluten sensitivity.

I am over it. Over doing everything as advised and still being chronically mentally and physically ill. Over “professionals” not seeing me as a person, not taking me seriously, or even taking advantage of me.

I am worn out. It’s a daily struggle being me, and it always has been.

I am lonely. I work full time, exercise in groups – but they don’t facilitate meaningful social relationships. I have some truly amazing friends, but they have lives of their own, most with partners and some with children. My family live in another country. I’m single. And my chronic illnesses, with all their complications, have begun making me anxious about going out anyway.

I am scared. Scared this is the rest of my life.

But: I am alive. I’ve actually tried replying with “alive” occasionally, and it’s interesting how people react. Some laugh, like I’ve caught them off guard because they have no idea how to or whether they even should respond. Or they think I’m making a joke. Others may reply, “that’s sad” – as in, it’s sad that’s the best I can say. And yes, if I’m quoting The Croods, in that I’m alive but I’m not living (I’m just not dying) – then yes, that is sad. But, on a better day, I could be quoting Sia – because, despite everything, “I’m still breathing; I’m alive.” Yes, that may still be shadowed by a tinge of sadness – but it also radiates resilience.

But really, what am I hoping you will say if I use any of these responses? What would I even say, if someone replied to me with one of these or something similar? I have absolutely no idea. Because “How are you?” is, as I said before, purely a social norm – we’re not talking about when a friend sits you down with a hot beverage and uses their concerned face. In that instance, I’m pretty sure what plays out would be a whole other game entirely.

Maybe there is no better alternative except to encourage honesty with those we trust or the next person who asks when we really need help.

Maybe it’s time we broke the rules and stopped asking “How are you?” unless we are actually genuinely concerned or curious, and prepared to offer support.

I know, it goes against what generations have been taught and is considered by and large as a fundamental of politeness. But this is a whole new generation, not just in terms of X, Y or Z, but a societal generation of awareness, acknowledgement, and, slowly, acceptance.

So no more pretenses. Let’s stop asking “How are you?” for the sake of social propriety, and keep it for when we really want to know about the other person. Let’s just stick with our original variations of “Hello.”

In fact, let’s start more hellos…

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Yes, You're Allowed to Feel Upset About Your Illness

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The other day I started bawling my eyes out while in a state of horrible anxiety, and my partner said to me, “Cheer up.”

I said in response, “I’m allowed to feel upset for a little while, no?”

He paused to consider it before saying, “Yes, of course you are.”

We are the microwave generation, and live in a high-speed, instant gratification society. The idea of “dwelling upon” can be a foreign concept for some people. As a person with chronic illness, we spend much of our time fighting, weeping, exhausted and in pain. It is this 80 percent of our lives that I would like to explore today. You could say, let’s take a little break from finding closures or solutions. After all, the no-man’s land of everyday life is where we spend most of our time.

Are you upset? Then just be.

Sometimes you feel awful for no good reason, or perhaps you have just received some bad news, and you know what? Yes, you’re allowed to feel upset about it, to feel melancholic, tired and defeated. It doesn’t help when others around you mumble some casual sympathy. Or worse yet, start sending random articles in an attempt to fix your feeling — you are not a mechanical product.

Pretending otherwise makes it worse.

In fact, it just piles onto the misery, because it invalidates our capacity to feel as a human being. It downplays the severity of the underlying issue. It exacerbates the assumption that you couldn’t possibly care that much. How could you, with such flippant, insensitive remarks? Sometimes darkness is able to provide cool comfort for a little while, and the last thing you need is the blinding light of the sun scorching down on your face.

Do what you need to move on, your way.

It’s OK to cry. To be in pain. To be not OK. Reach out and touch that raw nerve of fear. Feel its heavy weight in the palm of your hand. Spend time studying its ugly nature. How else are we truly going to defeat something we refuse to examine? We often drown ourselves with distraction, sometimes using positivity as an excuse to hide and at other times using social noise to override internal dissonance. But we are human beings blessed and cursed with the capacity to feel. We own the ability to experience a mind-blowing spectrum of emotions. Each comes and goes in good time, and balance is always healthy.

So ignore the naysayers who tell you what and how you should feel. If it helps you make it through, wake up and see the sun rise again tomorrow, how can it be that bad of a thing?

“There are days you’re going to feel sad. You’re going to feel angry. You’re going to feel scared. That’s nothing you can choose. But you can make stuff…” – Peter Docter, director of “Inside Out”

The original post and other stories can be found at A Chronic Voice.

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To Anyone Else Craving Recognition for Getting Through the Day With Chronic Illness

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Sometimes I crave acknowledgment for the illnesses I have.

I know that might almost sound like I’m attempting to romanticize chronic illness. Like I want to be celebrated for my tremulousness, my pain, my weakness.

I don’t.

The author feeding a horse

I previously had dreams of representing my country at the Olympics — far fetched, I know, but nonetheless an aspiration. I grew up on my skis, developed an unbreakable love for horses, and developed my dreams through those sports, standing on the podium surrounded by some of my best friends, feeling the exhilaration of racing and competing, doing what I (naively) believed I was born to do, and would only improve at throughout my life. My dreams of success and the podium grew as I developed into an older, somewhat mature and athletic girl on the verge of womanhood in her last year of school.

I believe it’s human nature to crave some form of success or acknowledgement for your hard work. That’s what I tell myself at least.

So when I lost everything, including my health, I held onto my dreams of success, I held on to my goals. Just in case.

I remained hopeful that, should I one day would recover from this incurable chronic illness, I’d swing my leg over, sit in the saddle like I was born to, and ride into the arena again. I remained hopeful that one day, I’d step into my skis, push out of the start gate with all my strength and carve my way through the gates with the finesse I once possessed.

As my illnesses progressed and my list of diagnoses grew — fibromyalgia, irritable bowel syndrome, peripheral neuropathy, dysautonomia and migraine associated vertigo — my future seemed less likely, further away, suddenly impossible.

I wake up in the morning to fatigue, a handful of different forms of pain and dizziness. I know from experience that the day will only progress to exhaustion so severe, it would become an effort to lift a finger, consumed by pain that would leave me feeling fragile. Some mornings I have to acknowledge that a day in bed is my only option.

My illnesses became my future, all I could see. They consumed me.

My life became filled with commiseration rather than celebration. I held a loose grip on my goals but came to accept that they weren’t realistic at that stage. “Maybe one day,” I’d say.

But I still wanted to celebrate. I wanted acknowledgment for the fact that I dragged myself through quicksand every day, just to do it again the next. Just sometimes, I’d like to be told, “Good job, you’re doing good.” I crave the idea of someone saying that they’re proud of me. I crave recognition — that although I’m not contributing to society in the same way or doing anything extraordinary anymore, I’m still working hard, and I’m still valid.

So if you’ve fought to get through the day — even if you couldn’t get out of bed, if your day is only just beginning and you’re already dreading how you’ll find yourself at the end of it, here is your reminder that you’re a fighter. That you are capable — look at you go!

Because this is your pain, in your body, and other people, no matter how much they love you, may not see that all the time — even though you feel it all the time. Tell yourself you’ve done a great job, because our struggle isn’t always visible to everyone, and they can’t always let you know.

Celebrate yourself.

Illustrated photo via Thinkstock Images

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Why Listening to Music Helps Me Cope With My Health Challenges

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Since I was 13, physical and mental illness has affected me in waves. There are good days, weeks and months, and then there are bad ones. Just like my overall health fluctuates, so does my music taste. I tend to get very obsessed with one song, artist, or genre for a certain amount of time, even if the music itself isn’t new. 

For some reason, my latest go-to for my subway commute to work is Grimes’ 2015 album, “Art Angels.” I’d listened to it when it was initially released, but after “California” popped back up on shuffle recently, I’ve been hooked. Grimes is an incredibly versatile artist who makes catchy and profoundly weird music. Sometimes it feels a little inaccessible, with song titles like “Kill V Maim,” but on “Belly of the Beat” I found that the lyrics really spoke to me.

The line “And you never get sad, and you never get sick, and you never get weak/We’re deep, in the belly of a beat” is my favorite in the song. To me, the song is about dealing with tragedy both inside and outside of oneself, and how music can create this other place where none of that exists. Music is a safe space, where, like me, Grimes can escape the outside world and, even, her own body. 

snapchat of girl wearing headphones in selfie

As someone who has struggled with chronic physical illness as well as depression, anxiety and panic attacks, I can relate. Music has always been my coping mechanism. I was that girl throughout middle school and high school who always had her headphones in (in between classes, of course). I had friends, and I’ve always been pretty social, but music was my retreat. 

My classmates didn’t always understand what I was going through, or know how to react when I had to leave school to go to the emergency room because I was curled up in pain on the floor of the art classroom. When I plugged in my headphones and pressed play, somehow it felt like the songs understood, even if they were singing about something entirely unrelated to my personal struggles, or in a completely different language.

In the hospital and doctor’s offices, music became how I dealt with my fear of needles. Since I was 13, when most of my medical issues started, I have always put my headphones in when getting a shot, blood test, or IV put in. I still do it, even though I’m 22. And, for the most part, the songs of choice have remained the same. 

My favorite solo artist of all time is Mike Doughty, former lead singer of the 90s alternative band Soul Coughing. I don’t remember what was playing on my iPod during my first major hospital stay, but for every visit since, “Madeline and Nine,” from his 2005 album “Haughty Melodic,” has been my shield from the needles. I could sing those lyrics in my sleep, and have seen him play it live twice, so I often don’t realize I’m singing it while a nurse prepares my veins for the latest blood test, or the insertion of a dreaded IV line.

I put my headphones in both ears, turn the volume up, and focus on the music instead of what’s going on with my arm. If I don’t look at it, it doesn’t bother me. I haven’t tried the trick without music, and, since it works, I probably won’t bother.

Today I had my fourth endoscopy in as many months. After I graduated from college in May, I moved from the Boston area back to New York, which means a new hospital and new doctors. I’ve realized, though, that while every hospital is set up differently and may have different protocols, it all ends up being pretty similar. 

So today when the nurse took out the IV kit, I had my headphones ready.

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