Monday, November 3, 2014

Death with Dignity - Brittany Maynard

Coming to terms with anyone's choice to end one's life is a difficult process and I have an unusual perspective from three points of view:
  • A recovered Stage 4B cancer patient who was told three times I would die during my harsh, year-long treatment.
  • A suicide survivor - the term used when a loved one completes suicide as my brother, Steve Crohn, did a year ago August. 
  • A compassionate, health-challenged woman who is contemplating my own choices when and if I get critically ill again.
As 29-year-old Brittany Maynard said: "It's not a decision you make one day and you snap your fingers." 

No, it's not. Seventeen years ago, at age 36 and married with two young children, I had to fight the urge to let go - to surrender to the disease and end the outright pain it inflicted. I was determined to live because of my children. However, when it was all over, I said I would never, ever do it again; that is, I decided then and there that if I was ever re-stricken with cancer, I would not fight it and I would let nature take its course. Now I'm not so sure. 

My brother chose to die with his dignity intact. Suffering from life's challenges, personal trauma and mental illness, he selected the date, time and place and how he would end his life. Found with a smile on his face I 'see' him that way today; joyous and in Heaven dancing with friends and family. As much as I railed against his actions for months, I have come to realize it was his decision and he felt it was best. I accept it but I will always miss him. I just don't question his decision anymore. 

Finally, here I am today with news just last week that my white and red blood cells are, for the first time since 1997, in the normal range. I am no longer immuno-compromised. It is truly amazing what the human body can do - in time. I still suffer from Lupus, fibromyalgia, gastroparesis, severe osteoporosis, depression and anxiety but I manage day-to-day with no thoughts of ending my life. 

If time is only going to make you suffer more, I do believe we should have the right to our own life-ending decision. Maynard, who had terminal brain cancer with just months to live, had to move to Oregon to have that option. Other states are beginning to craft legislation that will allow assisted death in cases such as Maynard's.

Yesterday, surrounded by family and friends, Maynard wrote:

"Goodbye to all my dear friends and family that I love. Today is the day I have chosen to pass away with dignity in the face of my terminal illness, this terrible brain cancer that has taken so much from me … but would have taken so much more. The world is a beautiful place, travel has been my greatest teacher, my close friends and folks are the greatest givers. I even have a ring of support around my bed as I type … Goodbye world. Spread good energy. Pay it forward!" 

May we all have the option to die with dignity and grace. 

Britanny Maynard in People magazine

Thursday, October 2, 2014

Pain, pain go away...

It hurts. I hurt. Where? Everywhere and anywhere. It's in my back, my arms, legs, neck, stomach, head and, even, my butt. I'm whining about Lupus, fibromyalgia, osteporosis, gastroparesis, arthritis, my worsening eyesight and the cold weather that's starting to settle into my bones in New York.

I'm making the doctor rounds, as ordered, and some medications are being removed, others added, dosages changed and tests ordered. *Sigh.* It's a job and it's a frustrating one at that.

Talking to a friend last evening who also has autoimmune disease plus work plus family plus daily life challenges like talking to any darn insurance company (auto, home, health - pick one) or staying on hold for tech support or grocery shopping or actually getting WORK done, I found myself giving her advice that I need to give myself again.

Pick three things. That is, choose - in priority order - what things you are going to master today, this week, this month. For example, I suggested:

  1. Health/Self-Care. She's presently in a 'flare' and it's gotten worse due to a huge personal disappointment. Because she was so upset yesterday she canceled her rheumatologist appointment and she needed to address her mental health as well. No good. Health comes first. Reschedule that appointment and talk to a mental health provider. 
  2. Family. She has a son who needs to know she's available no matter what shape she's in. I learned that lesson the hard way by getting too wrapped up in my own grief over my brother's suicide this past year that I neglected my kids and one acted out when he felt it was finally safe to do so. 
  3. Paid Work. As an advocate for others, like myself, she is always helping people for free but neglects work for which she can be paid. 
And because neither of us can stop it, I added a fourth which is our passion: Advocacy.

My friend champions the causes of those who are trampled on in Family Courts across the United States, mostly parents who lose their children under ridiculous rulings by the departments of child welfare. She does an amazing job. I am trained as a Court Appointed Special Advocate (CASA) for children in foster care and I have become involved in suicide awareness and prevention due to my brother's death last year. I've put the CASA work on hold because that would be my number five. That's too much.

I told her we're good enough as we are; doing what we can, when we can but taking care of ourselves comes first ... and praying doesn't hurt either. I hope she takes my advice. I'm trying to take it, too, because I overextend, over promise, overdo.

Chronic illness should not manage us. We must take back the reins and keep reminding ourselves that it's simply okay to just be.
Picture credit:

Wednesday, September 17, 2014

Crohn's Disease ... No laughing matter

Yes, I am related to Dr. Burrill B. Crohn. My grandfather, Myron, was his younger brother. This fantastic article was just published about the discovery of regional ileitis and how my brother, Steve Crohn, also contributed to far-reaching medical science leading to a cure for HIV.

I hope you find it interesting and educational.

The Pharmacologist - September 2014

Article begins on page 132.

Monday, September 15, 2014

Life takes its time...

Last time I wrote, I expounded on what it feels like to turn 54-years-old after never thinking that I would even live this long due to cancer, lupus and chronic illness. None of my doctors gave me any encouragement. But life takes its own time and I'm glad.

Today I celebrate my marriage of 30 years to the same man - yes, the same man! I know that is uncommon but I think it might have something to do with commitment and honor and love and - to tell the truth - neither of us ever had anywhere to go when we threatened to leave!

Albert Einstein said: "The only reason for time is so that everything doesn't happen at once."

Ain't it the truth. As I scroll through my memories, I could never have been able to understand them or learn from them if everything ended up in a jumbled pile of contorted stuff. That's why we process things as they come to us. That's why I'm not a big picture taker; I want to take in what I am experiencing, seeing, doing without worrying if I get the shot.

Yesterday was a great day for memories. A family day when my husband, two sons and I went to New York City to see STOMP off Broadway, walked from the theater to Little Italy and the Feast of San Gennaro and wound our way through masses of people, cutting through Chinatown, to get to an Italian restaurant my Italian husband remembered, the original Puglias. Not only did we eat delicious food and toast my son's 21st birthday, there was singing and clapping and waving of napkins and standing on chairs. Ahhhh life! It happens in moments.

Today I get to think of all those moments because I'm tired; oh so very tired. My disabilities render me physically useless the day after such a moment. This is when life takes its time and I get to remember yesterday and all the days, months, and years before.

The only thing we forgot to do was take a family picture! Rats. 

Mulberry Street, NYC