Life is a funny thing, you squeeze onto it too hard and it slips out of your grasp.
Starting from when I was eight years old I’ve been sick.
I had my first hospitalization and my first feeding tube and my first surgery in the year 2000 at age 10. In 2012 I had a tumor removed from my brain. In 2013 I was life-flighted from my local hospital to Mass General Hospital to have a brain bleed repaired. In 2014 I became so incapacitated by a mystery illness that obviously went deeper than just gastroparesis alone or just a brain tumor alone, or just a neurogenic bladder alone, that I spent 5 months at Mass General hospital getting stabilized and getting tested until we figured out what was wrong with me. In the spring of 2015 I had spent three months at my local hospital for a bowel obstruction and then a whole bunch of complications. During brief acute crises I would have moments where I would be in fear for my life and would force myself to stay conscious, focus on the world around me, focus on breathing just to stay conscious and stay alive, but on a normal everyday basis I always just assumed I’d be okay in the end.
Jillian, the nurse practitioner that was my primary provider at the nursing home I’d been living in since July of 2015, finally spoke to Dr. Hurrowitz at some point within the week after my appointment with him at the Nerve Injury Clinic. My visits with my mom (who had come with me to my Nerve Injury Appointment and had also heard him basically offer me hospice) were less stilted starting that week too. Something in the Tectonic Plates that were at the very base of our relationship had shifted at that moment in the doctor’s office when Dr. Hurrowitz had explained to us the severity of my illness. The two of us were having a rough time grappling with the fact that my days were limited, but at least we were wrestling with it together.
It frightened me to know that I was declining so rapidly. I had been aware of it but had pushed it to the back of my mind not wanting to deal with it, but then to hear a doctor say it out loud like Dr. Hurrowitz had, just made it so real, and then to know that I was just going to keep on declining and there was nothing we could do about it except just try to slow the process down. That was in-your-face frightening. But to hear him bring up the idea of thinking I was so bad off that we may want to think about stopping all treatment and just making me comfortable, that was code-speak for putting me on hospice. My mom knew it. I knew it. Neither of us said this out loud either at the appointment or while we were trying to work through all of our emotions together on the phone or in person during our visits. Saying it out loud would have made it too real, and we didn’t want it to be real. Already I could feel the fear covering me like an ice-cold blanket.
I knew what I wanted. I was going to continue to fight. Back when I was ten and had gotten the gastroparesis diagnosis following the emergency surgery they had tentatively diagnosed me with a severe incurable form of dysautonomia and they had told my parents that I probably wouldn’t live past 20. My mom shared this with me on one of our post-Nerve-Injury-Clinic–appointment-phone-calls breaking her own rules about not discussing anything medical over the phone with me.
“They said that you had a severe form of dysautonomia or autonomic neuropathy and that it was causing your gastroparesis, all of your random complaints of pain, your fatigue, your rapid heartbeat, and your low blood pressure. They told us based on many of your inflammation labs they could tell there was a lot going on with you and they urged us to look further into your dysautonomia. She probably won’t live past 20, is what they told us. We didn’t take any of it seriously, we thought they were crazy because for so long everyone insisted that you were fine and it was an eating disorder, a conversion disorder and it was somehow all in your head. I never dreamed that they could have been right, but you did beat the odds they gave us. You’re 24, you lived 4 years past their prediction and you better keep proving them wrong.” My mom said.
“I’m trying,” I promised her, but some days the severe pain, intractable nausea, shortness of breath (to the point where I felt like I was breathing through a chewed up, soggy, paper straw), vertigo, dizziness (that made the room spin and me feel pinned to the wall of a kaleidoscope), swelling, headaches, weakness, inability to even swallow my own spit, and overwhelming exhaustion was so bad that I felt like I couldn’t even move and I wasn’t going to live another day let alone years longer, but giving up is not in my vocabulary so I always pushed through it.
I was not going to give up or say “I’ve had enough treatment making me miserable I want to call it quits and just go on hospice and be made comfortable”. That was never even an option in my head and I made that very clear to my mom. She seemed relieved.
Jillian thought I was making the right decision to keep pursuing treatments as well.
“Dr. Hurrowitz told me that he wants you on at least the two liters a day of IV fluids to keep your electrolytes even. He said if we get any, even slightly-off, lab results I need to immediately adjust the fluids. It’s the only way we can get you regulated enough to do IVIG down the line. He says the IVIG is what’s really going to help you,” Jillian explained to me a few days after my appointment. She made no mention of stopping IV fluids, pulling my port, increasing my J tube feeds, eating by mouth, nothing.
“Yeah, that’s pretty much what we talked about,” I had agreed, smiling to myself that she had never even apologized for how she had insisted I didn’t need IV fluids, didn’t need to talk to my doctors because she knew everything about everything, how she had almost killed me by feeding my parents a whole bunch of happy endings that couldn’t exist and then illegally invoking a health care proxy and subsequently stopping necessary IV fluids that put me into a lethal heart rhythm, or for how she attempted to destroy my relationship with my mother. Now she was acting like all along she had agreed with me and my doctors and it was no big deal to run the IV fluids I’d been requesting the entire time and to draw my blood twice a week just like I’d been asking the entire time. Oh well, I was just going to go along with it for now. I had the ombudsman coming the following week and he was going to hear everything.
One other thing she mentioned was that my blood counts were dropping lower and lower. Dr. Hurrowitz mentioned that you’ve required Venofer infusions in the past. He recommended that I reach out to hematology/oncology and request a consult.”
“Okay,” I agreed
A few days later the psychiatric nurse practitioner dropped by again.
“I think you should give her a chance to revoke the health care proxy herself.” She told me.
“Okay, so should I just like ask her, ‘do you think you can revoke my health care proxy? I feel as though I am mentally competent to make my own health care decisions and the psychiatric nurse practitioner agrees with me?’ or something like that?”
“That would be perfect.” She agreed. “You can even add, ‘and she never signed off on any court paperwork that I am mentally incompetent to make my own decisions’ that way she knows you’re onto her and if she doesn’t revoke the paperwork there will be legal consequences on her.”
“What do I do if she doesn’t agree to revoke it?” I asked.
“Oh I’m pretty sure that she will, but if she doesn’t tell her, ‘then I’m going to have to report to the department of public health and the ombudsmen that you illegally invoked a health care proxy because no mental health professional signed off on it that I’m mentally incompetent and I doubled checked with the mental health professional here and she says I’m mentally competent.’ She’ll get in big trouble for that, but I doubt she’ll allow it to get that far.”
The next morning when Jillian came in to do her morning check-in I could feel my heart hammering in my chest. I was so nervous about how this was going to go.
“I need to talk to you about my health care proxy,” I told her.
“What about it?” she asked.
“I was wondering if you could revoke it, I’ve spoken with the psychiatric nurse practitioner multiple times and she feels that I’m mentally competent and able to make my own health care decisions, she also said that she never signed off on your form invoking my health care proxy which means your health care proxy is illegal. She is planning on bringing this issue up to the department of public health unless you revoke the health care proxy today and give me back the power to make my own health care decisions as she feels I am competent to do so.”
“Well I was going to revoke that anyway, so consider it done,” Jillian told me.
That was much easier than I thought it would be. It’s amazing what a little pressure from other doctors can do with a provider on an ego trip.