Kate's Disability and Empowerment-Themed Boudoir Session

A Note From Sam about the Session…

When Kate asked me my thoughts on a disability-themed boudoir session, which would be a juxtaposition of traditionally “sexy” outfits and poses contrasted against the every day realities of living with disability, I was immediately in. As we worked out the details, I got even more excited for the session, but I couldn’t have imagined how powerful the experience would be, even for me.

Kate and I both have Ehlers-Danlos Syndrome (EDS), a connective tissue disorder that impacts how our bodies produce collagen. It sounds like such a little thing, but it profoundly impacts almost every aspect of our lives. Whereas I (and my son, Ben) have the Hypermobile subtype of Ehlers-Danlos Syndrome, (also known as hEDS), Kate has the Classical subtype (also known as ClEDS). We have overlapping symptoms, but Kate’s symptoms predominantly affect her skin (scarring, wound healing issues, etc.) as well as her tendons/ligaments, which has had a significant impact on her mobility. She and I talk a lot about the impact of disability on our experience of day to day life, and how it can be very easy as fat, disabled women to feel invisible, and to feel like the exact opposite of what’s sold to us in the media as “sexy”.

Wanting to reclaim power in a fat, disabled body is something that is deeply personal to both of us, and to be able to collaborate on a project in this realm was so meaningful for me. I literally cried while editing the photos, not to mention the fact that we had such a fun (and emotional) time during the shoot. I could go on and on for ages, but I thought it would be way more impactful to ask Kate some questions about her experience. Check out her thoughts below!

In Kate’s own Words…

What made you decide that now was the time to book a session?

I'd never really been the kind of person who felt like boudoir photography was for me. My entire life, I'd been the opposite of what the media and society called sexy--I'm fat, shy, have a chronic medical condition, I'm covered with bruises and scars. I don't really wear lingerie or sexy clothes. Doing my hair and makeup is more of a pain than anything. I have never considered myself especially attractive without someone, usually male, insisting I was. Based on these criteria, I figured it wasn't worth the money to get boudoir photos taken. Even once I got married and considered getting them for my husband as a gift, I figured he would want a new video gaming system more than just some photos of me trying to be sexy (something I didn't feel especially good at anyway).

I wear a knee-foot-ankle orthotic (KAFO) on one leg and a knee brace on the other leg, and hiking boots to provide support to my feet and ankles. I was getting ready for work one day, and all I had on at the time was my bra, underwear, braces, and hiking boots. As I was traipsing around my house, I laughed a little at myself and thought, some women seduce their husbands with stocking and high heels. For me, it's hiking boots and medical braces. From that thought, the idea of doing a boudoir shoot, but using assistive devices and medical equipment with the stereotypical sexy elements was born.

I texted Sam the idea when I got to work and then couldn't look at my phone for a while. That's when the doubt set in. It's a stupid idea. Who's going to want to see the photos anyway? Why get photos taken that I don't want to show to anyone? It had probably been done before--here I was, thinking I was all original or something. When I was finally able to check my phone, Sam had texted back: "I would LOVE to do a session like that! If you're down I would totally do it. Like seriously, I love it." That was all the reassurance I needed.

What were you hoping to get out of the experience?

At first, I thought it would just be a fun experience with a friend. I knew I'd get some photos that maybe I'd look back on some day and remember having a good time with Sam. There was a small part of me that wanted photos that I could share of a disabled, fat girl being stereotypically sexy, and that they would spread around the internet and inspire other people to get their photos done as well. But that's just about the actual product from the session. I didn't think very much about the experience of the session itself or how I might feel about the photos or myself after.

Describe what the session was like for you.

It was a ridiculous amount of fun! I've been friends with Sam for a while, and I know her thoughts and opinions on body acceptance/positivity/liberation, fat acceptance/fatphobia, disability, living with chronic illness. Knowing how in sync we are on a lot of those topics made it so much easier for me to trust her and allow myself to do something with her that I'd never considered "for me"--and allow her to document it! Even though I know Sam well, I feel like she would put anyone at ease. I laughed so much, and only part of the time was it because Sam was making me do something that felt silly (but ultimately looked great!)

I went through a range of emotions since we were incorporating a number of things that have always been an object of distress for me--most notably my leg braces and my wheelchair. There was anger, and sadness, and some real reflection on why bodies like mine (and devices that can be so helpful and freeing for people) are met with such derision. Sam had the idea to put the flowers in my braces, and while she was shooting those photos, I thought, Oh, it's like a funeral for my legs. And I started to tear up because I miss a lot of what I could do before I became so limited in my mobility.

Immediately after I started tearing up, Sam told me we were doing the "fuck you, chronic illness" powerful shot. I can see the tears in my eyes in some of those photos (or know they were there), which makes it all the more powerful to me. Our feelings about our bodies, our mental health in general, and our attitudes towards disability are also shunned and derided. We're not supposed to be negative; we're not supposed to give into our limitations; we're supposed to be smiling and positive-minded all the time; "you're not fat, you're beautiful!" *eye roll* However, there's real strength in accepting your limitations and changing the world around you to conform to your needs--physical, mental, or emotional--and not the other way around. Feelings can be fragile, but they aren't weak.

Was there anything that surprised you about how the session went?

I was surprised at how quickly it went, and despite Sam's multiple warnings, how absolutely exhausted I was after. Getting into poses, holding them, changing positions and outfits, standing, sitting, laying, having a fan pointed at you for hours--it all wears on you!

A comment Sam made during the session has stuck with me. I had my mostly black braces and hiking boots on, and Sam said, "You know, you really look like you have some badass, Sara Connor exo-skeleton armor on there." I stopped and was speechless. She continued, "I mean, really, they look like thigh high boots." NEVER in the years I've been wearing various types of knee, ankle, and leg braces did I ever think they could look sexy, cool, or, heaven forbid, BOTH. It was just an off-handed comment Sam made, but it changed my perspective completely. Now, when I am putting them on, I don't hate them quite as much. In fact, I just remind myself that I'm giving myself +5 to armor.

Describe how the image reveal went for you.

I'd been thinking about how I would feel about seeing the images for weeks before Sam even took them. The last couple of times I've had formal photos taken, I haven't been happy with how I looked--mostly, I didn't like how fat I looked. Since then, I've done a lot of work on my body image, learning about fatphobia, the colonialist roots of our current beauty ideals, disability acceptance and politics, and what that all means to me. Even so, I was still nervous about seeing all of me exposed. Sam had my photos ready sooner than she had anticipated, but even though I was excited to see them, and she was excited to show them to me, I asked her to wait to do the reveal for a few days so I could make sure I was really in the right headspace for it.

The image reveal was both better than I expected and more difficult. The better part was how much I really loved (and still love!) the photos! I tried to give credit to Sam for her artistry and talent, but she just responded with "it's all you. I just clicked the button." I loved the photos so, so much. To see my smile, despite wearing my knee braces, to see me laughing in my wheelchair, to see my big belly exposed and still consider the photo sexy...I wasn't prepared for that and how amazing I would feel about it.

The difficult part was that there were still photos that I didn't like or didn't want to see because I didn't like how I looked. I picked them apart in my head and judged myself by standards I know are arbitrary. Those are the ones I've been really sitting with and trying to love.

What was the hardest part of the experience for you?

Matching the idea of what I look like in my head to what I saw during the session and in the photos. I don't have a very accurate self-image in my head, so whenever I see myself in a mirror or a photo, I wind up disappointed. There were a lot of reminders during the session of how my body doesn't measure up--it's broken, it's fat, it doesn't work great, a lot of people would find it disgusting. But anyone who has enjoyed my company, loved me, cared about me, wanted to have me around me, found me funny or attractive or yes, even sexy, who has hugged me or kissed me did it while I was in THIS body. No one else who has loved me ever cared that I was fat or disabled. So why was it so important to me? I'm still working on that part.

What were you the most excited about as a result of the experience?

I kind of hinted at it in the previous answer, but I've revised the opinion that I'm not sexy or I'm not the kind of person who can be sexy. I may not feel sexy on a regular basis, but if I want to, I can. I've been at war with my body so long, apologizing for it, hiding it, worried about what other people thought of it. I'm almost 40, and as cliched as it sounds, I regret the years I've lost fighting my body and hating it for what it isn't. I'm excited to learn how to love myself--physically, mentally, and emotionally.

What would you say to someone considering booking a session?

Do it right now, if you feel ready for it. But don't wait until everything is perfect--then you'll never do it. The experience itself is fun and empowering. The images are just that--images. The feeling of knowing yourself in your own body--reflecting on what you're doing, why, and how you feel about it, THAT'S the reason to do it. And if there are some kick-ass images of your lovely self as well (which there will be), then all the better.

Enjoy the photos friends!

- Sam

7 Gift Ideas for People with Chronic Illness

Sometimes small gestures of care and support can mean the world to someone dealing with chronic pain or illness

If you’re wondering what kinds of gifts might be useful for a friend or family member with chronic pain or illness, hopefully this little list can give you some ideas!

7 - Activities and creative distractions

When you’re suffering from chronic pain, fatigue, or illness (or all three), sometimes you need a little distraction or a way to keep your hands busy. If the person you’re shopping for wants a creative and funny outlet, check out these awesome coloring books and some colored pencils

Coloring Book: Unicorns are Jerks

Coloring Book: Mer-World Problems

Colored Pencils: Prismacolor 72 Colored Pencil Set

6 - Something cozy to sip on (and from)

There’s not much more comforting than a nice cup of tea or hot chocolate, and if you’re sipping it out of a great mug, one that keeps your hand warm even, it seems even better (or is that just me). If your friend or family member has chronic pain, small comforts are going to mean a lot, so check out some ideas for some cozy sipping!

Hot Chocolate: Land O Lakes Cocoa Classics Variety Pack

Tea: Yogi Stress Relief Herbal Tea Variety Pack

Mug: Handwarmer Mug

5 - Getting comfortable

Getting comfortable is hard AF when you’re in pain, and for some, temperature control can also be difficult, so how about helping someone by getting them set up with some body pillows and a heated blanket, complete with a little foot pocket?

Blanket: Heated Blanket with Foot Throw

Pillow: Full Body Pillow with Memory Foam Fiber

4 - reading material

Many people with chronic illnesses or chronic pain struggle with their body image. It can be difficult to love a body that gives you such a hard time. Here are a few reads that can help your friend or family member process the difficulty of chronic illness or disability, while supporting the idea that we’re all worthy and valuable, chronic illness or not.

Book: The Body is not an Apology

Book: How to be Sick

3 - Bath and spa time

Self-care isn’t all about baths and spa treatments, but it sometimes includes those things, and that’s great. If your friend or family member is able to take baths, I have some good recommendations below, but if not, there are also a few recommendations that can ‘bring the spa’ to them! If you want to really go all out, consider getting them a massage gift certificate!

Overflow Drain Cover (to give a few more inches of water in the bath): Bottomless Bath Overflow Drain Cover

Bath Salts: Dr. Teal’s Milk & Honey Epsom Salt Bath

Bath Bombs: 24 Organic Bath Bomb Set

Bath Pillow: Ultimate Relaxation Bath Pillow

Bath Tray: Royal Craft Wood Luxury Bathtub Caddy Tray

Foot Spa: Foot Spa Bath Massager with Heat

Back Scrubber: Exfoliating Back Scrubber

2 - Waterproof kindle

People with chronic illnesses spend a lot of time waiting. Waiting to feel better. Waiting at doctor’s offices. Waiting for test results. Waiting for meds to kick in. There’s just a crap ton of waiting. Sometimes it’s nice to have a light and easy e-reader to carry around that has some favorites books on it, so if you’re going for a larger gift, perhaps a waterproof kindle is a good way to go.

E-Reader: Kindle Paperwhite Waterproof E-Reader

1 - Your help and support

Here’s a secret you may not know about your friend or family member with a chronic illness; They need more help than they are asking for. Give them some help coupons, offer to assist them with household chores or errands, or just ask how you can best support them. It all helps, and means more to us folks dealing with chronic pain or chronic illness more than we can say.

—Sam

Ehlers-Danlos Syndrome Awareness

Photo by the fabulous Krista @ Hove Photography!

Getting Used to a New Normal...

My son and I were recently diagnosed with a rare, incurable, and degenerative condition called Ehlers-Danlos Syndrome, and I've found myself without much time to sit down and think about what I wanted to write to help bring awareness to this rare (or at least rarely diagnosed) genetic condition. 

First, let me start by saying that, broadly, Ehlers-Danlos Syndrome (EDS) is a group of inherited connective tissue disorders that impacts skin, joints, blood vessel walls, the digestive system, and basically most every other part of the body as well. The defining characteristic of all types of Ehlers-Danlos Syndrome is a genetic defect in how our bodies produce and repair collagen. Which, before knowing what I know now, wouldn't have sounded like that big of a deal really, but it turns out, hearty collagen is super important to basically everything in your body.

Collagen is found everywhere in the body, and therefore, nearly every system of the body is impacted in some way. And because of the wide variety of systems that are impacted, no two people with EDS have exactly the same symptoms, making the syndrome incredibly hard to diagnose. The average amount of time for a person to be diagnosed with EDS from the time they first begin discussing the seemingly unrelated symptoms with their doctor(s) is twelve years. Let me repeat; TWELVE YEARS. I've been lucky in that way. While I've had many (many!) years of odd and uncomfortable symptoms, from the time my health started to nosedive a little more drastically to the time I was diagnosed was less than a year. So in that respect, I feel very fortunate. I certainly went through many years though where I was essentially told that there was nothing wrong with me, or that perhaps I was just tired because I was a mom (*insert giant eye roll cuz overt sexism*). Having a diagnosis now at least allows me to plan, as best I can, and it also allowed Ben to be diagnosed more quickly than he might otherwise have been because Ehlers-Danlos often has a dominant inheritance pattern (depending on the sub-type - more on that below).

There are currently 13 known sub-types of EDS. Ben and I have been diagnosed with the most common sub-type; EDS Hypermobility type (or hEDS). Common symptoms of this particular sub-type of EDS include extreme joint hypermobility (and here I thought being flexible was a good thing), chronic joint pain, chronic fatigue, frequent dislocations and partial dislocations, easy scarring, easy skin tearing, poor wound healing, digestive issues (I'll leave that broad, but it's rough), and a whole host of other things, including comorbidities such as Mast Cell Activation Syndrome and Postural Orthostatic Tachychardia Syndrome (which is super fun, let me tell you). 

Now for the bad news. This is a genetic condition. There is no cure (no seriously). Taking collagen supplements won't help because my body will always produce faulty collagen no matter how many good building blocks I give it. Eating a different diet might be good for me, but it won't cure EDS. Exercising, in some cases, can be downright harmful, so Ben and I have to be very careful how we get in physical activity, and really listen to our bodies. More bad news... This is a degenerative condition. While no two individuals with EDS have the same journey, it's not being negative or overly pessimistic to say that, over time, my health (and unfortunately Ben’s too) will continue to get worse. My best hope is to use the best practices currently available (physical therapy, occupational therapy, regular massage, regular low to no impact exercise, knowing my limitations with physical activity, etc.) to slow the decline as much as possible, and do what I can to maintain as good of a quality of life as I can, for as long as I can. I'm really working hard on it (which in and of itself is exhausting). 

I don't say any of this to get sympathy, and DEFINITELY don't mistake this for an invitation to give me suggestions on what herbs we should be taking (my treatment plan is something my doctors and I work hard on together, and I'm not inviting anyone else to the party), but I want to spread the word about this rare and often misunderstood condition, because the more I learn about EDS, the more I think it's not quite as rare as it seems, and it could be just that it's rarely diagnosed. Awareness is key to more research, and better outcomes for those of us living with EDS. 

If you'd like to learn more about EDS, here are some excellent resources: 

• Hands-down, THE best explanation of EDS I've found that's in plain language. This is something I've sent family and friends to help them get a better understanding of what EDS is and the impact that it has: https://slingsandarrowsofoutrageousfortune.wordpress.com/eds101/

• The Ehlers-Danlos Society, which provides a wealth of resources for both patients and their doctors and other providers: https://www.ehlers-danlos.com/awareness-2018/

• The Facebook support group. Which I know sounds weird, but let me tell you, there are SOOOOO many weird things that happen to your body when you have EDS that it can be immensely helpful to talk with folks who really get what you're going through: https://www.facebook.com/groups/152615741473177/

If this is something you too are living with, just know that there are people out there going through the same thing. Find those people, because we help each other get through the really tough days. If a loved one of yours has EDS, do everything you can to educate yourself about this condition, so that you can be a loving support for them, and make sure you have someone to talk with as well!

And lastly, if you've made it to the end, thank you. This is a tough journey to be on, and the more awareness we can raise, the better. Please share, and get the word out, both in Ehlers-Danlos Syndrome Awareness Month, and any month of the year. 

--Sam 

I'm So Tired...

...I haven't slept a wink

I used to listen to the Beatles' song "I'm so tired" on repeat when I was up with Ben (3-7 times a night) for the first two years of his life. It was oddly comforting. 

I go through periods in my life where I experience fairly extreme fatigue. In fact, I don't think I've felt "well-rested" since before Y2K. Now is one of those periods. I've been so exhausted lately, it's hard to keep my eyes open even while I'm walking, and it takes real effort not to fall asleep in the middle of conversations. Hence why I missed a blog post last week, and have been MIA on Instagram.

Being this tired has me musing about how it can be so easy, particularly on Social Media, to pretend like life is really glamorous, and that we're all really successful and happy and awesome all of the time. Well, I just want to be honest with you all and say that, just like every other human on the planet, life is not always easy or glamorous in my experience. It's hard, messy, complicated, weird, beautiful, fierce, and delicate, all at once, and I don't always feel successful or happy even. It's a white-flag-waving kind of week (or month or whatever), the kind that makes you say "Enough! Enough!" and maybe cry a little (and maybe eat too much chocolate, I dunno, you do you), and so it's time to just be real. 

So, with that in mind, here I am. Life is not glamorous or easy, and I'm not feeling particularly successful right in this moment. I'm breaking out, I'm exhausted, my health is not amazing at the present time, and I feel vulnerable and on edge. 

Life isn't a perfect 280 characters on Twitter, it's not an amazingly curated snapshot on Instagram, it's not a well-liked post on Facebook; It just is what it is, and the best thing, I think, we can do for one another, besides the basics like being kind, not murdering people, and disavowing racists and nazis, is to be honest when things are hard instead of always feeling the need to pretend they're perfect. They're not perfect. I'm letting you off the hook, blog readers. My life isn't perfect, yours isn't either, and it's totally okay to be honest about that.  

Go forth, my friends, and let someone else off the hook today by being real, and imperfect. I bet they need it. 

--Sam