Posts Tagged ‘medical team’

A Death in the Family

Thursday, July 31st, 2014

My brother Ben died last week. I miss him a lot and always will. He was a wonderful man, husband, brother, and human being. You can read more about him in the tribute on his Facebook page:

I’m writing about his death for two reasons. The first is because I am grieving and am trying to come to terms with and accept the reality that I will never see him again. And writing about it, my memories, and my brother’s (mostly) wonderful qualities, will help me heal.

The second reason I’m writing about Ben’s death is because I think it may have been preventable. And while nothing will bring him back, I want future possible deaths that can be prevented to be.

Here are a couple of my memories: Ben was five years younger than me, so he had five less years than I’ve had to learn the lessons life gives us. So it seems kind of ironic that I, as someone whose job and career is to give people ideas and suggestions to help them live better lives, would call him for help and advice. But I did, more times than I can count. And the counsel I received was always compassionate and wise.

One more thing I want to share about Ben is that he was a gifted french horn player. While I’ve heard him many times, one time that was especially memorable was last year when my girlfriend and I stopped by to visit on our way home from a trip out of state. We were treated to our own live performance, and I can truthfully say that what came out of Ben’s horn was richer and more heartfelt than anything I have heard from any other french horn player’s horn before or since.

I’m grateful for those and many more memories, but of course I wish Ben hadn’t died. I’ll probably never know for sure, but I think his death could have been prevented. I’ll describe how by sharing my own story.

I was diagnosed with Crohn’s disease in 1996. When the treatments my doctor gave me didn’t help, I decided to learn as much as I could about my illness and all the standard and alternative treatments people were using to treat it. I made a vow to myself that I was going to do everything I could to get well, and do so for as long as necessary.

While doing my research, I was well aware that on the internet people can say anything – and some do. So I got corroboration before trying anything. I ended up trying many standard and alternative treatments, and even devised one of my own.

In effect, I became the head of my medical team of doctors and other practitioners. And after three years, my Crohn’s went into remission. With the exception of a few relapses (the last one was four years ago), it has stayed in remission without drugs ever since.

Ben didn’t do that. He got the best medical care he could for his atrial fibrillation and his lung disease, and followed his doctors orders religiously for years. His health would get better, but then get worse than it was before, but he continued to follow orders.

He also didn’t give his heart or his lungs – or himself – the kind of compassion I have written about in many of my posts. And he died, much too soon.

Just to be clear, I’m not saying you should disregard what your doctor says. He or she has studied and learned a lot about diagnosing and treating illnesses.

But doctors are human and they make mistakes, and in my experience they often ignore potentially helpful alternative treatments.

So what I am saying is do your own research, and ask questions about the treatments you’re given and also about alternative treatments you think may be helpful.

I don’t know if the holistic approach to treating illnesses and healing the body that I have briefly described here would have prevented my brother’s death. But I have seen far too many positive results for me not to strongly encourage others who are struggling with illnesses to try it themselves.


To learn about other effective ways to heal your pain, I invite you to sign up for my free E-Course: Learn How to Raise Your Energy – and Your Spirit – in Just 21 Days.

You’re the Boss

Tuesday, March 16th, 2010

Imagine this: You take your car to your mechanic because it has started making a strange noise. He listens to your short description of the new noise. He starts the engine and listens to it very briefly. Then, without asking for your approval, he tells you the repairs he’s going to make, tells you how much they are going to cost, and when he will do them. He gives you a form with a lot of fine print to sign and asks you for the keys.

If any mechanic treated you this way, you would either set him straight, or you would immediately walk out of the shop and look for a mechanic who explained the repairs he thought your car needed and why they were needed, and then asked for your approval before scheduling and making them.

We expect our mechanics to be straightforward and respectful, and to get our approval before they start to work on our cars because 1) we’re the customer, 2) we’re paying for the service, and 3) we – not our mechanic – will be using and relying on our car after the repairs are made.

The way I see it, the same principles and reasoning should apply to our interactions with our doctor. We’re the customer. We’re paying the bill (or if not, our insurance is and we’re paying the co-pays), and we, not our doctor, are the ones who will be using and relying on our bodies after the treatment is done.

Unfortunately, not all doctors are willing to acknowledge the fact that medical decisions are ultimately up to the patient. If yours isn’t, you may want to consider finding another one. I’ve had to do that myself more than once, including a time when I sent a letter describing the kind of doctor I was looking for to all 37 gastroenterologists within a 25 mile radius of where I lived (only two responded, but the one I ultimately chose was great).

I want to say here that I strongly prefer having a collaborative rather than a contentious relationship with my doctor. Doctors have had lots of training, and I want them on my medical team. But since it’s my body – and my life – I need to be the team leader.

For more ideas for living well, sign up for my Biweekly Tips For How to Have a Better Life When You Have a Chronic Illness.

Tom Robinson helps people suffering with chronic illnesses stop struggling, and then he helps them find true happiness and joy – even when they don’t think there’s any to be found.

This post is Tom’s March entry in the Health Activist Blog Carnival. If you’re interested in participating too, you can read all about it here: