It’s been a difficult couple months, rather year, like it has for so many. I’ve had many deeply sad times. In the past few months everything that could happen has behind the veil of social media.

I share about disability and the emotional and physical struggles that can accompany a progressive condition, but rarely do I share specific difficulties happening in my life. I dislike sharing particulars because I don’t want sympathy or come off like I’m exploiting bad events to elevate myself. I hate this kind of attention. But in the mass of social media squares I also feel a responsibility to be honest.

Everything about

my body and mind

feels frail and fragile.

It has been a painful few months. All around us there’s much sadness, death and loss, including my own small corner. While my photos show me going out and visiting life, there've also been times I’ve haven't left my house for weeks — having zero desire to go out and explore. Not even a road trip or nature sounds tantalizing when I get like this which is unlike me. And besides the freelance work I do for pay and immediate advocacy work, I’ve mostly felt tired and uninspired — causing my personal projects, like finishing my children’s book, to suffer. It’s hard to be creative when your headspace is so cloudy.

I’m empowered, self assured and proud to be me in this disabled form but this isn’t the truth all the time. I don’t want to be an advocate or “influencer” who only shows the best while preaching the empowerment gospel, because that isn’t reality...for any of us. Life is not a tile of photos asserting its best or perceived best self. I’m here to be transparent, connect and to show I understand and that you’re not alone — not to use my platform as an ad space or faux 24/7 positivity.

I know much of disability advocacy today is around ableism education, empowerment and offense to the public thinking disabled only suffer and therefore we’re sad all the time. But I can be empowered and request respect from an ignorant society that excludes disabled, while also having my own journey that, yes, comes with its struggles and grief. The two are mutually exclusive.

In the past few months Jason lost his job (he has one now), all 3 of us (Jason, me + Pippi) ended up in ER at separate times, both of Jason’s grandmas died and right before Christmas we got word my dad had a year to live due to rejection of his lung transplant (ended up only having a few weeks). A week before my dad passed our friend took his life and Jason was diagnosed with an autoimmune thyroid disease. And this isn’t even everything.

Specialists were guessing Jason had a myopathy (muscle disease) which was originally frightening. But I’m actually the one who diagnosed Jason before the doctors could, a thing I do quite often. I disagreed with the specialist and forced them to check his thyroid, proposing his multiple symptoms looked more like Graves disease and I was right.

On top of all this — and the number of people in my circle, disabled and healthy, who have died and/or struggled weeks in hospital cause of Covid (all which had the flu multiple times with no problems) — I’ve just been getting much weaker, which weighs heavy on my heart when I consider how much time I have left to travel and do all the things I want before I physically can’t. As I progress it does become more difficult to not worry about what is coming.

At my stage of progression I have less and less mobility so the smallest new weakness, like my finger no longer being able to bend, is monumental to daily life. This means holding silverware is difficult. Most people can’t recognize these tiny losses but they’re colossally apparent to me.

The last few months has caused so much stress that I can feel it weighing down my body, making me feel hundreds of pounds heavier. I’m so much weaker than I was a year ago. Some of this is from not being able to do physical therapy cause Covid numbers were never contained and I’m high risk, but much of it is stress and less activity plus natural progression. Stress is an enemy for people in general but it’s worse for someone like me as it acts like a weakening agent that progresses my condition faster.

After my dad died and I returned to LA I had my FIRST experiences ever with panic attacks and anxiety, and because I have a muscle condition the physical effects were amplified. It was so bad Jason nearly took me to the ER cause he was so scared. Since, I’ve been anxious with an impending sense of doom; a new emotion for me. When my mother died 4 years ago I immediately developed a list of mysterious and debilitating chronic symptoms that I now think were physical translations of stress, some of which have mysteriously come back right after my dad died, like chronic itching. For the last couple years I’ve struggled with intense insomnia and periods of not being able to eat for weeks or blinding nausea, all of which no one can help me with.

There are so many other things nagging me lately, like being 41 and feeling the emotional repercussions of my personal decision I made a few years ago not to have children due to lack of access to local familial help or support we would require. This decision has caused much mourning as it was always my dream to have children, especially as an adoptee who has no biological family or roots. And, now with both my parents gone there is an even deeper reckoning of feeling truly alone in this world with no family of my own to turn to.

Deciding not to have children is always a sticky topic to share about because in no way do I want to imply or perpetuate the ignorance that disabled can’t be great parents. There are many disabled parents who have multiple kids who experience able-bodied telling them they’ve ruined their child’s life by having kids, which is disgusting. But everyone also has different environments, access, finances, support, health and parameters to consider when making these kinds of decisions.

I’m an optimist, I’m not suffering, I’m not sad every single moment, but like all humans I experience a complex range of emotions. I think a lot of people think I’m strong but that doesn’t mean I don’t struggle — sometimes daily. To pretend otherwise only hurts those who are struggling.

So, how does one find their way through the depths of despair? I have plenty of experience with grief and loss because of my body, but even I sometimes feel numb in knowing what to do when I have too much sadness to contend with. I think the point is to never stop and take it one day at a time. To everyone who is having a sad time, it’s ok to be sad, don’t fight it and confront it. In order to be a whole person we have to experience a range of emotions, but society often tells us we can’t be sad because then we’re weak (especially to men) and if we are, don’t show it. Don’t be afraid to be vulnerable and tell others you’re struggling. All I want to say is after all this is done, do not go back to “normal”. Time is not forever and it does not wait for us. #kamswheelstravel

Follow more art, mini-memoirs and wheelchair travels @ Instagram.com/kamredlawsk