March 21, 2022 (journal excerpt): Today’s a loss, and everything is not fine.

My last post was an “Everything’s Fine” Instagram reel mirroring our social media and human tendencies of portraying everything is great, even when it’s not. I’m here to say anyone pretending their life (or disability) is always happiness and self-acceptance isn’t being honest. It’s not always fine, and it’s ok to say this. 

In the (disabled) empowerment age, especially as an advocate, it’s equally important to share the entire picture including the loss and grief, because no matter how much pride, confidence or empowerment one has — loss, grief and sadness are very real byproducts in the journey of life, and especially if one is going through health issues or traumatic change to their physical status. 

I reserve my social shares for my interests like art, traveling, highlights and talking about the human condition. My reason to share is the advocacy of my rare disease and disability, and part of this is sharing what inspires me and makes me who I am so others get to know me and see disabled as “normal” and capable. But it’s not all amazing adventures, rounding out learned experiences and finding the magic in the unexpected or difficult. It’s also grief, loss, frustration, uncertainty, fragility…and it’s impossible for a wall of tiled photos to give a complete narrative..

While my shares are real, and I probably share more honestly about the disabled experience than most, I never want to be seen as only seeing amazing places and wheeling and dealing, because many days this is me in bed: inconsolable and overwhelmed by my body. 

This is me.

When I’m finally tired of having no independence.

When I’m finally tired of dripping fatigue.

When I’m finally tired of unrelenting pain.

When I’m finally tired of losing everything I love.

This is me in bed with no one in the world knowing (or perceivably caring) except Jason and Pippi. 

I have a very rare and incurable muscle-wasting condition, and as it progresses many days I wake up in dread of what the day is going to bring physically. Most nights are preceded by the same.

I’m actually sick a lot but if you saw me on the street, know me only through Instagram or a friend catching up with me, you wouldn’t know this. But I’m reminded every second; constantly prodded with pain and discomfort while an intimate witness to growing weakness in every subtle move. There’s no break. Ever. And some days this constant loss is unbearable, taking everything I have to get up and try again. But all one sees is my travels, not remembering one second in a day can’t possibly include all the highs and lows that occur in a day. While I probably explore more than most, the majority of time I’m home working, sick or solving a stream of obstacles and struggles related to my progressing disability. 

Last week I woke up crying at 3AM. In this cry spree, it’s like I admitted to myself that losing drawing was in my very near future. I cried like a baby. So hard I couldn’t breathe. The prior night I came across an old sketch of Cecil the octi-amputee and it triggered the hundreds of ideas and characters I have in mind. But I’m left with the frustration of my hands — too slow and weak to match my ambitions, and I was frustrated and sad, falling asleep with this in mind before the 3AM cry.

At my current progression it’s taking everything in me to finish my children’s book and I don’t think I have to pretend this is ok and everything is great with disability, when it’s not. I’m facing the impending loss of drawing much like losing the ability to cook (a true love). At the time, cooking was getting harder, and, to be frank, dangerous. Watching me use a knife was nail biting. I could’ve pushed myself to cook a little longer, but at some point it became agonizing knowing my cooking days were soon over, so I dropped it before it could drop me. It’s like a love you know you have to leave but you don’t want to.

Loss is so hard. It never leaves, it’s never lost. It’s there with every breath. Sometimes there’s brevity, other days it’s furiously breathing down my neck. I don’t feel strong, and on these days I feel very disabled and provincial.

People always think I’m so “strong” but the truth is I’ve learned to live with it because I don’t have a choice. I’m intact enough to refuse losing myself, my dreams and passions to this, so I keep fighting. Growing up I had adult examples who lived their life according to fear and I knew I never wanted to live this way. But some days I’m so tired of trying. 

Once, a family member said, “Well, you’re so strong, you don’t need help…so that’s probably why no one checks in or has been involved…” as a justification for the lack of involvement, especially in the beginning years. I sat there thinking how unfair it is to be forgotten just because you’re perceivably “strong”.

I’ve heard many selfish stories like this: It becomes about how hard it is on everyone else, forcing the responsibility onto the one living the struggle to make sure everyone else is comfortable with what’s happening. They don’t want to see the reality and unfairly expect you to handle it alone because you’re “strong” or because they just don’t want to deal with it. But strong doesn’t mean a lack of weakness, struggle, depression or pain. Being the strong and capable one who is often the doer in the room — taking care of everything and helping everyone, can be isolating, leaving me with the question, “Who’s there for me?”

Don’t forget the strong ones. We’re allowed to be weak and need support, too.

I don’t love sharing my vulnerabilities, but it’s worse to pretend I never struggle because it’s dishonest and hinders others. I understand why projecting only positivity as a form of advocacy happens, especially for disabled whose goal is to project constant strength and happiness out of fear of looking weak, or to deflect misinformed narratives about disability. But representation  matters here too. 

You can be confident while also insecure. You can have pride in yourself but struggle. You can post a lovely married photo, but feel alone or broken inside the relationship. You can be smiling in a zoom meeting and crying as soon as you hit the end button. I’ve done this. Life is in grays, not simplified headlines. 

I never want to portray perfection, like I have it all figured out or never struggle. This is why the journey to acceptance is the message of my children’s book I’m working on (Monster and Me). It’s not always great and adventures, and I don’t want people to receive simplified messages about disability from me. I want people to understand nuance, and the truth is, it’s not always empowerment and fabulous — where only ableism is the evil villain and source of all our disabled problems. 

Every disabled and chronically ill person is in a different stage, and some are completely new to life with a disability so it’s important to be real so they know they aren’t the only ones who struggle or feel shame. And not everyone has resources or money to take care of the many physical and adaptation needs. Not every disabled can build a platform to provide income to support constant needs. And not everyone has a partner, family or people around to help, and these facts need to be acknowledged rather than disguised under a mound of toxic positivity.

Faux positivity is like blockage, it prevents you from processing life, trauma and what’s happening, and processing is essential to true acceptance, not avoidance or dissonance.

Everything’s not fine when it takes me an hour just to open my door. Everything's not fine when no one is around to help me go to the bathroom and I have to hold it. Everything was not fine when I lost the ability to drive. And everything will not be fine when I can no longer express myself through drawing. Everything is not fine, and I’m sorry I don’t always love disability. I live with it and don’t let it stop me but there are days when it’s hell constantly feeling sick or having new weaknesses like neck drop or difficulty holding a fork.

On days like this, in a highly productive society, it’s easy to feel like a failure and small while laying in bed and thinking, “today’s a loss”. But it’s not. This is life. If you aren’t ok then everything and everyone you interact with will be at a loss when you spew your anger, discomfort, dissatisfaction, sadness, emotional confusion or inability to confront your issues onto every innocent bystander. So, take the time. The truth is we’re all running around pretending we have our shit together yet none of us do, so it’s ok if you don’t handle life with grace all the time.

This is less of me telling others to post their fights with their partners or deepest secrets on Instagram, and more a reminder for when we’re scrolling that everyone is not fine, and we all experience dissatisfaction and unhappiness. This knowledge is not for us to feel better that someone else is also struggling, but about human connection and recognizing we’re all the same.

Everyone wants to be vulnerable but it’s easier if someone is vulnerable first, because it makes it ok for everyone else to show themselves. It’s good to be positive and have perspective, but it’s also fine to not be fine and to feel however you feel, because maintaining a false image isn’t nearly as important as recognizing what’s true and confronting it. My public shares are often things I’m telling myself, and thoughts I write down in the moment…unfiltered. Unfiltered. That’s nice, isn’t it? In a virtual world of filters it’s nice to say no. Not today. I’m not pretending today..

Follow me at @instagram.com/kamredlawsk