I hate being called “too nice.” Too nice?
The Parkinson’s community is not “nice.” It is resilient. Every day people with Parkinson’s show up through the anguish, pain, confusing and convoluted mental health issues…there is no time and no place for “nice” here.
Don’t you hear us shouting at the world? That we need a cure, better therapies, empathetic doctors, and medicine that works and doesn’t have debilitating side effects, consistent physical therapy with wayyy more visits than are covered… Are you listening? If you are not shocked by the level of suffering people with Parkinson’s can and often do endure, then you are not paying enough attention.
I implanted a device in my body to zap my brain into complacency KNOWING its outcome was not guaranteed – and I am still suffering. I disfigured myself for relief and still have found little. My breasts are two different heights now, my hair is brittle from lack of nutrients and protein. I’m anemic. I have osteoarthritis. Bone spurs. Medication induced dyskinesia. Dyskinesia induced dystonia. Absorption issues. Relief may come but so will more suffering. So will side-effects. Don’t tell me to maintain a positive outlook.
I take bladder medicine. I’m medically retired, in perimenopause, and I can’t look at myself on the mirror much anymore. I’m only 50! I take pills for anxiety that cause anorgasmia and loss of desire. I take muscle relaxers that leave me listing like a drunk. My medication makes me twitch. The twitch makes me hurt and the hurt makes me scream into a pillow as my brain shouts, please make it stop, over and over. Sometimes, I just shout out loud, instead.
I have to wear shirts with funny sayings to have the confidence to leave my house and get stared at – always hoping no one draws the wrong conclusion and calls social services on me. And the real clincher is that all of this is likely caused by man-made, environmental factors. We let this shit into our lives.
If you can’t hear your message echoed in others – shout louder and more often. If you don’t hear us begging for relief, then stop drowning out and diluting the message. PASS THE MIC to people who live with this every day and LISTEN!
