Tuesday, December 9, 2014

At a loss for words...

It's criminal when a writer loses the ability to write. I suspect it is because this blog is so very personal that I have been silent for so long.

You see, as we've slowly slid into the holiday season and I, like many survivors of suicide (the correct term for those who have lost a loved one to a completed suicide), find myself in the depths of grief and longing once again, it didn't help that we finally closed out my "brudder's" storage unit, giving away the last of the items it contained - a shelving unit.

For a year I've been going back and forth to that space - a little haven where I was surrounded by his art, his personal belongings, his essence. Of course, many large and small bits of his 'stuff' are now in my home but it was like going to his grave (where I have yet to go since his headstone was placed) and it made me feel close.

I was his "Twisted Sister" and he was my "Brudder from Anudder Mudder" but that was what made it all so special. He was truly my best friend (even though we fought in recent years) and with our father gone as well, the convoluted combination of holidays we celebrated are no longer as cheery, silly, or fun.

This is when sadness turns into nostalgia, I guess, and that's a good thing.

I've thrown myself into Suicide Awareness and Prevention efforts, helping a wonderful, gentle man launch tours and workshops and conferences in Westchester County, New York. See www.sisfi.org. At times, I don't know if I am the organizer or the participant but my involvement helps in large and small bits, just like my brother's stuff.

I'd be lying if I said I haven't had some very dark days. I have. I want to crawl into that heavenly space where he now lives and feel his embrace, hear his deep, penetrating guffaw, and see his twinkling eyes. Kind of like searching for Santa Claus who is so real but so difficult to catch. He always slips through my fingers.

For those of you suffering physically or emotionally through this holiday season, I send you all the strength of love and prayer that I can possibly muster. In turn, please do the same for me.

Love always,
My brudder and I nearly 20 years ago. 

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: http://www.princesswarriorlessons.com/

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.