Sunday, June 21, 2009

Purpose and meaning

Over the years, as I developed my accidental "career" as a crusader for patients' rights, one thing kind of led to another. In the beginning, I never imagined that I could make any money at it--it was just something I had to do. In 1971, when I heard about the Mental Patients' Liberation Project and went to my first meeting, I immediately felt that I had found a home, found some way of giving purpose and meaning to the awful experiences of being committed to a mental hospital and given drugs against my will (this is all discussed in much more detail in my book, On Our Own). Eventually, membership in the group led to speaking engagements, and after writing the book to many more, and then I even began to be paid for some of them.

In later years, when I was doing a lot of traveling to conferences and meetings, and I'd occasionally strike up a conversation on a plane, people used to ask me how I got into this line of work, and I used a line I stole from JFK. He was asked how he became a war hero, and his answer was, "It was involuntary; they sank my boat." So I would say, "It was involuntary, I got committed to a mental hospital."

There have been many twists and turns along the way, but always guided by a fundamental principle: that people with psychiatric labels deserved the same rights to liberty and independence as everyone else. Sometimes the work was about changing laws, sometimes changing public attitudes, or about providing self-help alternatives, but the overarching principle always remained the same. I never thought about retirement, because I loved what I was doing so much and felt that it was useful and important work. So when I started getting so sick about two years ago, it was a major shift to go from a life of constant travel and activism to one of being able to do very little, and it's been very hard emotionally.

So now, having given further thought to our discussion with Marie the other day, it seems that I do have one more piece of unfinished work, which is promoting the value and importance of hospice. I find it very sad that far too many people enter hospice only within a few days of death, when they can derive only a small benefit. Surveys show that most people say they want to die at home, and yet most deaths take place in hospitals. There are a lot of reasons. Death is the last taboo, and most people don't want to confront the fact of their (or a loved one's) imminent death. Doctors see death as their "failure," and often won't make hospice referrals when it is appropriate. Families are often split, with some arguing for every possible treatment while others are more concerned with comfort.

I want people to see the value of hospice. Ever since I made the decision, late last year, to give up on treatments that were not accomplishing anything, and focus instead on getting the most possible enjoyment in the time I have left, I have felt a great sense of peace. I'm lucky that Marty, Julie, and I are all on the same page and don't have to face the divisions that some families do. Given the choice, I'd rather be strong and healthy and go back to the life I left behind, but I don't have that choice. So, with the cards I've been dealt, I'll do my best to let people know that there is value in last days, and how important it is to insure that the dying person has the option to make choices that maximize his or her own values and desires.


  1. I know that both of my parents were happy to die at home. They each had hospice care, though I felt they could have taken advantage of more of the amenities that hospice would have provided. But they weren't interested in those things, being private people. I think they somehow felt having strangers in their home was a little intrusive.

    The bulk of the daily care fell to my brother and me - and that was okay. I knew I had hospice watching my back, and they were there when ever I needed to talk.

  2. Thank you for affirming exactly why I have chosen to become a hospice nurse. I can only hope that I am as successful at my 'calling' as you are at yours.

  3. Hi Judi-I've been reading your blog for a few months but haven't commented until now. I live in Melrose, have 2 cats (one is 19 y.o.!), & work as a case manager for folks with HIV/AIDS. Many of our clients also have mental illness &/or substance abuse issues. I thank you wholeheartedly for your work in the mental illness field; it's one of the few fields that has as much stigma as HIV/AIDS.

    I also thank you for promoting hospice with such conviction. My parents both had hospice for over a year each (my dad died 3 mos ago) & it was wonderful & truly appreciated. Both were able to die at home, which was so important to them.

    I'm so sorry that you're so ill; that must suck. Thank you for making it real for the rest of us. I look forward to reading your posts!