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      The Right to Die Is the Right to Live

      December 17, 2012

      Wolf as he sees himself going out in the world.

      One month before his 18th birthday, my son Wolf was thrilled to receive invitations from galleries in Melbourne and New York City to exhibit his paintings of mythical creatures, herbivores, aliens, religious imagery, and cities destroyed by solar flares. The bad news is that the showings are scheduled for the summer of 2013. Wolf may not be alive then. At least according to the call I received from one of his doctors, suggesting that he and I begin sessions with an end-of-life grief counselor.

      Wolf was born with a microdeletion in his 22nd chromosome. The resulting medical conditions have rippled out into ever-expanding rings of pain; each attempt to fix one problem results in another. The more tests and treatments and medicines he is prescribed, the sicker he gets. The sicker he gets, the more tests and treatments and medicines he is prescribed. 

      At various points in his life, Wolf has been diagnosed as schizoaffective, bipolar, ADD, OCD, and ODD, and he’s also been undiagnosed with these disorders. Finally, the doctors settled on NOS—“not otherwise specified.” The US Department of Health claims that 20 percent of Americans are mentally ill, and even questioning authority is considered by some to be a disorder. If you fell into their diagnosing hands, who knows what they would find? Wolf has never had a break from his diagnosers.

      I am grateful to science for saving Wolf’s life at three weeks old when his heart failed; I am grateful to psychiatry for creating medications to stave off crises that, without intervention, could have been disastrous. I am grateful to the many giving doctors, nurses, therapists, teachers, and aides who have taken his little broken body and mind into their hands and hearts to infuse them with more life. But somewhere along the line they—and I—forgot that eventually we would have to step away and give that life back to him.

      When the grief counselor was recommended, Wolf was already seeing three therapists weekly: one for speech, another for behavior modification, and one to monitor psych meds. If they were not able to really help him live, why should we bring in another to help him die? Between the three specialists monitoring his thoughts and the 11 in charge of his physical systems—circulatory, immune, gastroenterology, ear-nose-throat, etc.—Wolf was on 16 medications. Blood tests and bone scans every couple weeks. Untold cups peed and pooped in, refrigerated and delivered. MRIs. Any rashes? Any thoughts of hurting yourself or others? Any delusions? Have we met our goal to interact with peers appropriately 75 percent of the time? Have you developed hair on your scrotum? Let me see. Any tenderness around the nipples? I’m just going to insert this barium into your G-tube.

      Home was no sanctuary. So many times he had to fast for 12 hours to prep for a test or leave a play date early because I’d forgotten to pack all the equipment he needed or cut a vacation short for an appointment or get up at 5 AM for the drive to Boston Children’s Hospital. Sleep wasn’t a refuge, for him or for me. One night, while I was having a really nice dream about trying on bathing suits (and I looked good in every one of them), the telephone, which I kept right by my head, ripped me out of my sleep. A nurse practitioner had just read the results of Wolf’s latest calcium-level test, and her voice was an insistent alarm clock.

      Nurse Practitioner: “The doctor wants to double his calcium intake.”

      Me: “He’s still throwing up every day. I don’t want to increase his calcium.”

      Nurse Practitioner: “You have to. If it gets much lower, he could have a seizure.”

      Me: “Could have a seizure. With the vomiting and nausea, he is starving to death.”

      Nurse Practitioner: “I see. I’m feeling like you need to come in and touch base with the doctor. Are you feeling that?”

      Me: “No. Wolf and I have up to five appointments a week, every week. I’m not feeling like I need to touch any base on an issue we’ve already gone back and forth on.”

      Nurse Practitioner: “I’m going to put you on hold, because I need to get the doctor in on this… I have the doctor standing right behind me, and she says his calcium needs to be doubled.”

      Me: “He can’t take it. He’s going to be throwing up ten times a day.”

      Nurse Practitioner: “Well, we agree that the calcium needs to be increased, so you’re going to have to double that. We’ll call you back in a week or so and talk about how it’s going. That’s all I have for you now.”

      I doubled his calcium.

      The Easter Seals aide who accompanies Wolf to his volunteer animal-care job emailed me the next day: “Wolfgang threw up earlier and just threw up again while we were trying to eat lunch. As he is pouring formula into his tube this time, he says he will throw up again if he has any more. I am strongly suggesting he finish anyway so that he doesn’t starve. Which will hurt him more in the end?”

      Wolf at three weeks old.

      This was followed by a phone call from a Medicaid rep who informed me that they would be refusing additional doctor overrides on Wolf’s prescription for Ondansetron (primarily used after chemotherapy to deactivate the portion of the medulla oblongata that induces vomiting), the one thing that has been effective at reducing his nausea. At $1,000 a month, the rep said that it was no longer a cost-effective solution. 

      “He lost 22 pounds this summer,” I replied. “He gained back six as soon as the Ondansetron kicked in, and that is the only thing that kept him out of the hospital, which will cost you a hell of a lot more.”

      “I understand how you feel,” she said. 

      “No, you don’t. You don’t understand how it feels to listen to someone you love puke his life out because his insurance company thinks he doesn’t deserve the medicine he needs.”

      Medicines order Wolf’s body around, and then his internal directives are changed whenever some number cruncher at an insurance company forces his doctors to compromise treatment. Therapists tell him how to think and behave, what his values are (for instance, he should desire independence). That’s not a personality; that’s a chart. To be “independent” on command is to be utterly dependent on others’ ideas of self. 

      Everyone occupies a place in Wolf’s head but Wolf. Even the nonprofessionals—myself, his aides, other relatives, the bus driver, other kids—pile on, reminding him of his “goals” and the many ways he is not meeting them. We define what growing up means for him—“doing what you’re supposed to do” (what we tell you to do). We even think it’s our business to tell him how to develop into a man, a space that for everyone else is considered personal and private. Because Wolf’s hormones and executive thinking are delayed, his social skills immature, his body still childish, clumsy, disoriented, and limp, and his disposition passive and receptive, we all live under the impression that his being is an open topic of discussion.

      If Wolf hadn’t already been diagnosed insane years ago, we would have driven him there. By constantly discussing how we could buy him more time, we suffocated his will to live. Death by boredom, death by advice tsunami.


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