I’ve just returned from Florida, having spent almost two weeks with my sisters, taking care of details since Dad died. There were plenty of tears – of course. But even more laughter – because despite our mourning, we shared many marvelous family memories as we uncovered this treasure (good grief – our grade school report cards!) or that one (did we really wear our hair like that in the 80s?)
And of course, there were the conversations with the more than 100 people who attended Dad’s memorial service. (Quite surprising really – they were mostly in their 80s and 90s.) It was a memorial service like few others – exactly what he requested – a celebration – a party! …including an open bar and hors d’oeuvres afterwards. The readings and passages were part-mournful, but more than that, they were an homage to a man loved and respected by many. My sisters and I were so very proud of the man who was our father.
Included in the celebration service was music, of course. But not what you might expect. Instead we put on a Glenn Miller CD, and a mix of other music from the 1940s. In the Mood, Candy, Boogie Woogie Bugle Boy — Dad would have loved it. I know his friends did.
The music – it was an important part of Dad’s life – and his death. In fact, through his final few days, I asked his hospice nurse to turn on the TV cable channel that plays1940s music – because it brought him so much pleasure to listen to the songs he shared with Mom as they were dating, fell in love and married. It seemed to work well, taking his mind off his pain, as he finally relaxed, slept, and then passed. Continue Reading →
My father, Richard F. Torrey (known to friends as Dick), passed away yesterday, Sunday, September 30th. He was a remarkable man who led a remarkable life.
I tell you this because part of Dad’s legacy is going to be the healthcare and advocacy lessons we learned along the way. Dad as patient. Daughter as advocate. A treasure trove of experiences.
Over the years I took note of the many – MANY – experiences we had through his health journey. But I haven’t written about many of them…. As long as Dad was still alive, there was privacy to consider and maintain. He and I talked about that many times. Something notable would happen, we’d wend our way through it, then he would tell me, “Write that one down – it will be a good one to share someday.”
Dad was diagnosed with prostate cancer in 1986 – yes, you read that right – 26 years ago. (By the way – that was before the PSA test existed for diagnosis.) He had surgery that year, but some of those cancer cells escaped. So Dad dealt with the disease for the next 26 years. You can imagine what we learned along the way about the healthcare system – both good and bad.
Nobody can ever be expected to know everything about everything at the moment they need to know it. Yet, if there’s one thing I’ve learned about medical providers – and health advocates, too – it is that there is a major reluctance to say “I don’t know.” It’s as if the fact that they don’t know something reflects on their ability to be useful. As if they are “less” because the answer isn’t right there in the front of their brains and rolling off their tongues.
I just don’t think that’s true or fair.
Whether it’s the psychology of dealing with patient-clients, or the databanks of information about any specific disease, to the ability to predict an outcome, to the “facts” of health and medicine (remember when margarine was better for you than butter?), the amount and nature of knowledge changes from minute-to-minute to day-to-day to year-to-year.
There is no one in this world that can know everything or have every answer at any given moment. Therefore, it’s absolutely fair to say, “I don’t know,” or “I’m not sure,” as long as it is followed by, “But I’ll try to get the answer for you,” or “But we can look that up together,” or some other promise to acquire the information.
Yet, I have watched and listened to providers (the most arrogant of them) give a half-answer, or a non-answer, or even an invented answer, rather than admit they aren’t up-to-date on something. You have, too.
Further, I’ve heard from advocates who are afraid to pull the trigger to go into business because they are afraid they don’t know as much as they think they should know. (There is a good chance they’ll never know enough – because their personal bars are set so high that their goals will be unattainable.) Continue Reading →
Pre-orders are now available (through October 1.)
($10 off the total of cover price, plus shipping and handling).
Pre-ordered books will be mailed on or before November 1.
It’s a step-by-step guide, covering soup to nuts, for starting a one person, solo practice or a partnership of two or more people. If your intent is to start up a multi-national corporation, then no – this book isn’t going to do that for you. But if you have some good advocacy experience (navigation, billing, therapy, mediation or others) and you wish to start your own practice, for-profit or non-profit, then this book can get you there. It includes details for advocates in both the United States and Canada.
With the national presidential conventions behind us, and particularly if you live in a swing state, you know that the political campaigning, dressed as attacks and vitriol, is only revving up (as if it can get any worse?)
This presidential election will be the first one that social media – like Facebook, Pinterest and Twitter – will be used by the mainstream to share opinions and information. Possibly for the first time, you’re going to learn what your friends and followers, and those you follow, think about which candidate – and why. You’re going to learn more about them than you ever knew, and I guarantee that if you spend much time on social media, you’ll be surprised, and in some cases, disappointed or even shocked by the things some of them have to say.
Some will make snide little comments. Others will be downright nasty. You’ll agree with some. And sadly, there will be others who you will never like, or respect, again.