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

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: http://www.princesswarriorlessons.com/

Depression

Here it is: The dirty little secret. I suffer from bouts of depression. As described by the National Institute of Mental Health, I am most likely experiencing a minor depression right now; a lackluster feeling of not wanting to do anything or see anyone and an overwhelming sadness that could last up to two weeks. I've been here before and, trust me, I'm not good company.

My work halts. My mood is low. My appetite is poor and my health issues are exacerbated. I actually had an episode of sweating through my pajamas one night this week and fear struck deep. The only other time that happened was when I had Hodgkin's Lymphoma and that was more than 15 years ago. It is a symptom and it also brings back hints of my PTSD from the emergency tracheotomy and its aftermath.

I think, too, I am wary of my 'ologists' month. By January 31st, I will have seen my rheumatologist, my oncologist, and my gastroenterologist and, undoubtedly, will be run through the gamut of testing I hate and the never ending adjustment of medications. Shortly thereafter, I will get my osteoporosis injection (the latest and greatest, or so they say) and continue my blah diet regimen. I have some new concerns and some old concerns. The docs and I will undoubtedly discuss them all.

Oy.

I don't like dealing with my health problems. I like putting them on a shelf and rolling along. But this past week alone, I've spent hours up late at night wondering whether or not to go to the hospital because my stomach is in spasms and pain from the gastroparesis I have lived with for some two years now, the strange night sweat and headaches and overall malaise. It is not pleasant when I have to go to the ER when the pain is at a +12 on a scale of 1 to 10. But that's what I wait for - the +12. I've learned.

For those of us classified as 'sick' or disabled, we don't know which comes first - the physical maladies or the depression; but both always come and there is no schedule. I know that, too.

According to the NIMH:

"People who have depression along with another medical illness tend to have more severe symptoms of both depression and the medical illness, more difficulty adapting to their medical condition, and more medical costs than those who do not have co-existing depression. Treating the depression can also help improve the outcome of treating the co-occurring illness."

I don't think many 'ologists' get this; nor the many specialists we must see individual for each piece of our bodies. There are so few holistic practitioners. Thanks to friend and colleague Susan Murphy Milano, and her courageous fight against Stage IV cancer last year, I've become acquainted with Dr. Dalal Akoury and her AwareMed Center in South Carolina. God, I miss your wisdom, Susan, and I'm definitely going to set up an appointment to meet Dr. Akoury when I'm down south in February. I know Dr. Akoury gets it and, perhaps, (just, perhaps) I might finally have a captain of my ship to guide me. Many have promised, none have succeeded. But it's worth a shot 'cause I ain't givin' up yet.

Lone Mallard