Dear intricately woven stardust lumps,
I’m pleased to report that for once changes have occurred my life that are positive ones. I’m still chronically ill and chronically broke, but I’m taking the time to be especially grateful for the little good things that I currently have. I intended to make a life update post but my brain has been obsessing about something else for the last few days, so it seems I have no choice but to write about that first.
Throughout my life I have continuously felt a lack of understanding from other human beings. I learned very young that chronic illness, mental illness and hospitalizations were all things that people couldn’t just talk about. Whether it was within my family or among friends and strangers, no one seemed to know how to talk with me about what affected me the most. Some got angry, some got uncomfortable, and even when someone was willing to listen, it wasn’t long before they would feel awkward and get to the point where they just wouldn’t know what to say. The more I experienced these social interactions the less I desired to express myself, and as I grew, I finally began shut down.
Then when I was 24 I fucking exploded and became a completely different person; I had become weary of the way I was expected to socialize, the idea that I couldn’t be myself because my life was comprised of oddities, emergencies and unique experiences. I started a mission to de-stigmatize chronic illness and sickness because I decided that those who are disabled and chronically ill deserve more than to be pushed into the corners of society or seen as taboo subjects.
Despite my drive to break down the barriers I felt suppressed my expression for most of my life, I still constantly run into the same situations. Some people don’t know what to say when I speak about my life as a chronically ill person, while others instantly minimize and gaslight me because they think I’m lying or exaggerating. I have lost many people I loved in my life because they would refuse to listen to me or overwrite me incessantly, which to me always sent the message, “you don’t matter.”
Last Thursday I was at my counselor’s office pouring my little soul out. I was reduced to tears, explaining how upset I was that I so often am told that I should not expect understanding from others. I swelled, imploring her to understand how badly I desire compassion and empathy from others, until finally I exclaimed through salty tears:
“I don’t understand why people fail to see that no matter what someone is suffering from, we all want the same thing. We want people to listen, understand, have empathy, and be supportive. Whether you’re mentally ill, physically ill, going through a break up, grieving or even just a bad day everyone needs the exact same thing.”
I’m sure I’ve had this thought before though I had never outwardly expressed it. Either way, I’m glad I did, because I think this is one of the truest things I have ever said. No matter what is causing our pain, we all need the same things, because we are all human. We all want to be seen, heard, and embraced with empathy. While the specific type of comfort varies person to person, the fact that they are in desperate need of compassion never changes at all.
The past month I have been living with two lovely older ladies who, after I had moved from California, deemed themselves my “adoptive mothers.” I never expected that I’d end up living with them, but my life took unexpected turns and landed me in their home for the next six months. Previously I had an entire apartment to share with my now ex-boyfriend, and downsizing was far from easy. However, being here is far better than being homeless, and I express my gratitude every chance I get.
Since I now live with two other people in a normal sized home, I have tried my best to be considerate of my Mommas who have been kind enough to take me in. Whenever I do things such as cook or shower, I always ask permission first so that I don’t get in the way of their routines. A few days ago, My Momma Rose told me that she felt bad that I had to go from my own home to someone else’s, and asked if it was difficult for me. “Of course it is difficult for me,” I replied, “I lost my home, but this is certainly better than nothing.”
This moment stuck with me days after. I believe it is partly because the reminder of my situation is always painful, but there is also a part of me that felt a complex whirl of emotions that were positive and negative all at once. Above all though, the fact that Rose has so much compassion for me often leaves me stunned. Growing up, most of the people in my family save for my grandmother were dangerous narcissists. They would never acknowledge the hardship of another, and if someone had it worse than they did, they would ultimately one up them to make sure the attention was theirs to keep. My Momma Rose did the exact opposite of everything I had become accustomed to growing up as a chronically ill girl in an abusive home.
I’m beginning to comprehend that what a person is expressing is sometimes more important than how they do it. My Momma Rose often reprimands herself for never saying things just right; but the more I get to know her and the others who have supported me, the more I see that she does understand, and when she doesn’t, she is willing to learn which is a testament to her compassion. Her words are more right than she assumes because they’re all filled with the sincerest expressions of love.
Few things are more important than compassion and love.
If all our life is but a dream,
Fantastic posing greed,
Then we should feed our jewelry to the sea.
For diamonds do appear to be just like broken glass to me.And then she said she can’t believe genius only comes along
In storms of fabled foreign tongues
Tripping eyes, and flooded lungs,
Northern downpour sends its love.