Photo by Madeline Brown
“One way or another, this darkness got to give.”
A few years back, I watched an archived Grateful Dead show, replayed at a local theater for Jerry Garcia’s birthday. At the end of the jam, in a capella, he repeated this line over and over and over again in his sweetly painful voice. Finally, the song ended as the last wine he released echoed through the crowd. I felt the words so deeply. This aching acknowledgement for what we’ve been through, and a fierce hope for where we’re going.
Freedom.
We all deserve it. We all need it. And we probably don’t realize how deeply it affects us…until of course, it’s threatened. I have felt this deeply since I acquired my disability, when the quest for agency became an ongoing practice.
When our freedom is challenged or threatened, it doesn’t take long to see its effects. It shows up in our mood, our bodies, how we flow through the world, our interactions, and our general well-being. This is how vital freedom is.
I feel that I have to first acknowledge how grateful I am for the freedom that I have. And I pray for those who face injustices, who don’t have the freedoms that many of us do, and for those who deserve more right now — more freedom, more peace, more love.
When you’re a person with a disability, who requires hands-on care for many daily needs, freedom takes on a whole new meaning. The necessity of it is amplified. The importance of it. The beauty of it. And most importantly, how we can achieve it.
Freedom and independence are adjacent entities. Independence can give us a sense of freedom, because we have more agency within that realm. We’re calling the shots most of the time. But when interdependence is more prevalent in one’s life, like mine for example, we have to do some mindful choreography in order to find agency within that collaborative dance. We have to dissect our routine and the space we’re in to see how we can make freedom accessible in our lives.
This approach to life helps me feel like the master of my domain — my body included, of course — when I have someone else executing a lot of my needs and routine. But it’s also a huge part of any partnership in life.
For me, it’s something as simple as communicating how I want something done my way rather than their way. It’s not from a place of judgment, but rather from a place of agency. It puts me back in the driver’s seat, and is crucial for my sanity, when my quadriplegic life can make me feel like a backseat driver in my own damn car.
Sometimes I just need to eat up space, alone. Whatever that looks like. But especially when I’m on the road, alone — taking my bad, crip self wherever the fuck I want to go — I feel closer to myself.
Right now I’m sitting in a cafe, sipping this big ass cup of tea — in tandem with my guava kombucha I brought with me — as I do my 25 minute writing homework for the day. Freedom is a bounty of beverages while accomplishing those goals, baby.
I need moments like this in order to connect with my autonomy. My empowerment. It gives me back my own space and a renewed sense of freedom after a long day of cares. Today was a full few hours of irrigating my bladder, stretching, toileting, bathing, dressing and finally eating lunch. It’s a lot of one-on-one, a lot of energy to exchange, a lot of communicating my needs and preferences — everything from what panties I want to wear, to how I want my eggs done.
There are going to be situations in our lives where our sense of agency is challenged — whether it’s with a tricky relationship or a hospital stay that renders us vulnerable — but what’s important is that we prioritize ourselves and do the necessary recon in order to honor ourselves within the chaos.
Can we take a step back and assess in order to gain back some power? OR, can we ask a friend to be our ally or health advocate in the process?
This can be so helpful in getting a new perspective, to help with our blind spots and to brainstorm — collaboration can be key. When we are in a vulnerable position or making a big decision, having an ally can help us make better choices. Ain’t no shame in seeking the support of someone we trust to be an advocate for our well-being. More on that another time…
I’m very fortunate to be able to drive as a quadriplegic, and even luckier that I have my own vehicle — Space Wrangler, as I affectionately call her. She is my “own personal universe.” So when the pressure is building, or I feel creatively or productively constipated, I put on some tunes (sometimes I go on a drive just to listen to a new album front to back) and change the scenery — in whatever way is accessible to me. I go out in nature and observe. Or I phone a friend. Or I meditate. I recalibrate, reconnect and get outside of the bad weather bubble that can accumulate around us.
And here we are. Flowing, getting shit done, hydrating with some delicious beverages. It’s moments like this where I feel gratefully renewed in my sense of grounding, my power, and in the energy I’m both emitting and open to receiving, especially when I’m about to lose my shit.
We are sovereign beings, but it’s not always easy to feel connected to that truth. I’m learning that it's an ongoing practice of LOVE.
It takes time and effort. It takes courage and mindfulness. And sometimes, it takes a little help from our friends. Even if we don’t have a Space Wrangler, we do have a voice. And if we can find the courage to speak our truth, and the vigor to make a plan, we can find ourselves again and again, anytime we feel lost.
Shoutout to my Minnesota peeps. Cruising excellence.
Jenn Champion - queer artist and a gem. Her words…
This is just Diana GOLD. It will bring you joy and have you feelin’ yourself, trust me.
Ways to reclaim agency, freedom and joy:
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