Let’s talk grief and loss. Last week I shared that I haven't been great emotionally. Arguably after summer finished life slowed down, leaving me with silent moments and in a pool of grief and mourning. I’ve been producing and trying to help others while feeling provincial, lost and entrenched in untameable grief darting from so many different spaces.

I keep a private digital journal and one of my recent entries was about not wanting to see others out of fear I’d have nothing to offer but tears. A couple months ago I began really absorbing the last year, the kind of contemplation a busy schedule can’t allow: my father’s death, all the struggles, heartaches, progression, grief and a list of uncertainty that seems to stretch to infinite, and it’s been breaking my heart. The mourning has been happening in ways it couldn’t immediately after dad's passing in January or after his memorial in June.

In September, I awoke crying realizing all this as I laid there in my still body and I felt vulnerable with a thousand shards piercing all my open wounds. I cried for hours. I can see my mom's smile and dad's laugh like echoes to nowhere. I don’t want to pretend my parents and I didn’t have our complications but love usually is complicated, and loss is loss.

Losing both your parents feels like the lights shut out. You’re alone and the lights which once was your past are now turned off, as if this past never happened. I don’t have my own nucleus family (kids) so, seemingly, it feels as if I have no future too.

So many changes, everyone’s leaving including friends and I can’t deny there’s a feeling of abandonment and loneliness I can’t shake; something I felt even with a family but amplified now that I’m parentless and an orphan once again. It’s everywhere, I can’t escape it. Even though I wasn’t dependent on my parents since I was a teenager, and lived in California for 15 years (seeing them in Michigan once a year), I want to have a home to go to but I feel homeless…aimless.

This time is also the entrance to a long holiday crawl and it always gets me, reminding me how alone I really am (holidays began to feel this way even before my parents died). As much as I love the holidays, it reminds me of loss. My grandmother (years ago) and mom died right before Christmas (4 years ago) and I found out my dad was dying a week before Christmas last year.

With so much loss and grief I’ve been under much stress. In parallel, I’ve been grieving the new losses of my body and I’m feeling the loss tremendously during this season in my rare GNE myopathy journey. I've progressed so much in the last few years (especially the last 2) and no doubt all the stress and familial loss has angered my condition, including a list of new health issues that began after my mother died 4 years ago and chronic pain that continuously climbs. It's a fact that stress quickens the progression of a condition like mine, but in general stress can cripple our health, disabled or not, causing mysterious and/or chronic health issues.

I’ve been acutely aware of my increasing lack of mobility and sometimes it feels like my insides are screaming out when I struggle with simple tasks like grasping my tablet pen. I’ve had rolling periods of utter sadness or anxiously awake at night stargazing my dreams while living the ferociousness of constant pain and weakness. It’s frustrating I’m also chronically sick yet I look perfectly fine. If I wasn’t in a wheelchair you wouldn’t think I struggled with health and pain because it’s invisible, and people around me regularly remind me that I look great (and not sick), but I am. I am.

I know this candid sadness makes me a “bad disabled” in the advocacy world of today, but I’m not here to pretend there are zero struggles outside ableism. Loss doesn’t mean I’m saying disability is bad, but loss is loss. Even though I’ve gained so much from being disabled, half of my life I was not disabled and since I’ve had to witness my body disappearing, and this will continue until no movement is left. And this is difficult. It’s loss on repeat. This progressive condition can feel like I’m being told weekly someone close to me is dying. Behind closed doors there are days I have so much grief over constant loss that I can’t help but lie in a field of hopelessness — however momentary this may be.

I’m at the stage of progression where seemingly small milestones are huge like not being able to articulate my utensil. The milestone I always dreaded. Eating independently in public is now nonexistent and occurred during pandemic times because I wasn’t used to going out. With a condition like mine you will inevitably lose function, but there are minor, “if you don’t use it, you lose it” effects that can exist. I can still feed myself at home (if I'm in my specific set up) but this is going away fast too.

I’m losing everything I love. I lost playing sports, running, driving, cooking, independence, and now I’m close to losing the ability to draw — the cruelest of all. You can’t see in my drawings how much I’ve progressed because it requires much effort to maintain the same quality level, but it’s much harder and can now see myself not drawing in the very near future and it’s torture. I didn’t just become an artist or creator because I edited some videos for social media, I’ve been an artist and creative my whole life and it’s so hard losing this aspect of my identity. Writing or storytelling is something I can always do (with the help of tech), no matter the progression, so don’t mistake my forthright sharing as saying there's an end to me and creativity because of my disability, but still…I’m an artist. I draw.

Recently I’ve been looking into an ocean of potential opportunities and yet I still feel…restless. Perhaps restless up against a ticking clock. How much time do I have left with this or that? What can I contribute to society before I lose some of these once loved joys?

If you know me you probably think I’m funny or at least sarcastic, full of life, laughs and ideas — and this is my real self. I’m clearly living my life. I have joy. I don’t look down on myself because I’m disabled. In many ways I feel elevated because of my disability. But I’m also allowed to grieve and I think we’ve taken this out of the disability experience. No one talks about loss and yet this is an important process in the journey of true acceptance (not masqueraded public acceptance) and you have to be willing to put the work in; acknowledging, examining and confronting loss, grief and depth of journey.

Apologies, if my posts seem melancholy lately. But I usually post as I feel and right now grief is in the playbooks (and that’s ok) just as it is for all of us during different seasons of our life. #kamswheelstravel @ Instagram.com/kamredlawsk