At first I was just pissed. I’ve been struggling with this dis-ease for a long time, trying to accept its presence; wanting to surrender to letting others help me. But, alas: people cannot give what they do not have. But the tape plays on: Insist on getting your needs met.
It brings up old shit. As a child, the adults I needed to care for me were not able to meet some critical needs, so as a young singer, I constantly performed this song:
There’s a someone I’m longing to see… Oh how I need someone to watch over me.
But as I was longing, I was also resisting. I had received the injunction to take care of myself. For years I’ve tried. But, surrendering to others is not the way I roll, although deep down inside there was always a prayer for that experience.
Well, things change. The body has its own agenda. Surrender to others sometimes, whether we like it or not, is the answer. Lectures and prodding from friends, a little deep reflection, and the reality that I cannot care for myself brought surrender. Friends have come forward in amazing ways. And still, I need more support to manage daily life. How disappointing that it costs money and that it’s in a rehab hospital. And therein is the rub. For many of the people in these institutions, meeting needs is not the goal; having a steady job is the focus.
Since September, the pain and impaired mobility caused by peripheral nerve damage has taken over my days and nights. In the morning and the evening, tingling and burning in the hands and feet, heavy legs, and a tight torso frighten me. On February 2nd, I went to the hospital for my second in a series of IVIG treatments. For a month and a half, I’ve been cared for by nursing assistants who neither know anything about my condition nor care to learn. The situation highlights a toxic belief that I’ve carried all my life: I cannot get my needs met.
It is Easter morning, and life in a rehab hospital is getting old. There are physical successes and setbacks, emotional frustration, and anger at the clueless. They are getting their needs met; they get a paycheck.
“Yours is an invisible disease; they don’t see where your pain exists and so they don’t think that it’s real.”
This is majorly frustrating because nursing assistants only understand what they see. They do what they’re told to do: make sure patients are fed, bathed, and their vital signs checked. They are not trained nor do they care to respond to the invisible. Things like Guillain-Barré syndrome or chronic inflammatory demyelinating polyneuropathy are inconveniences; conditions where they have to think about and take a step towards understanding so that they can help people heal. The tape blares in my head: Will I ever get my needs met?
I’ve expelled a lot of anger and resentful about not getting my needs met. And this saga seems to be a continuation of the negative belief. How do I change the story? A nursing supervisor advised, after I had an encounter with the nursing assistant who was fairly brusque and impatient, to educate her, to ask her if she knew anything about peripheral nerve damage or Guillain-Barre. I did that and, not surprisingly, the answer was — surprisingly — a humble “no.” My frustration, along with her judgment, dissolved for the moment, and in a perverse kind of way we both got our needs met.
People cannot give what they do not have. Have I said this before? I know that I’ve heard it. People cannot give what they do not have, and I cannot get what I never got in the past from those in my present. In my push to be loved and cared for in this current situation, I’m faced with the reality: I am getting my needs met.
My friends are here for me, and I have to meet my needs by finding a facility where the staff completely understands my condition. I can change the message and start things anew. After all, it Easter, and with rebirth, I always get my needs met.