"Say what you have to say, and not what you ought."
~ Henry David Thoreau

Monday, April 30, 2012

Mental Health Parity

Probably the biggest, most bitter irony of my sister’s death is that she overdosed on her anti-depressant, the very thing that was supposed to help make her better. This isn’t something I’ve spent an awful lot of time dwelling on, instead it’s just another in the long list of sad circumstances surrounding her suicide. This week, however, I have been thinking about it, especially after I received an email requesting my help in raising awareness about the Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act and the fact that since 2010 final implementation of the law has been stalled under the Obama Administration.  
First, some background.  Senator Paul Wellstone was a champion of legislation that would end discrimination against people suffering from mental illness.  After his death, the above-mentioned legislation was introduced by a bipartisan group of Senators and Representatives. The law was passed by Congress in 2008 and signed by President George W. Bush.  It requires large group and Medicaid-managed health plans that include mental health and substance abuse benefits along with standard medical and surgical coverage to treat them equally in terms of out-of-pocket costs, benefit limits and practices such as prior authorization and utilization review.     
Although as a Senator President Obama voted for the law, and from all indications remains supportive of it, final implementation of the law has been stalled under his administration since 2010.  As a result, there is confusion among employers over what has to be covered, with many employers still not offering mental health benefits as part of their group plans.  Some that do offer mental health benefits impose barriers and limitations to the coverage that don’t exist for physical conditions.  The failure of the administration to act and issue the final rule on the law that would make it a reality means that every day people suffering from mental illness and substance abuse are being denied coverage for their conditions, or having unfair, discriminatory limitations and restrictions placed on the coverage that is offered.
What does this mean?  It means those suffering from serious, often debilitating and potentially life-threatening mental illness and substance abuse issues are often unable to receive the treatment they need.  I have to wonder if things could have turned out differently for my sister if this law had been in place.  Instead of feeling hopeless and overdosing in order to achieve her final escape, she could have received life-saving treatment.

The last year of her life was difficult one.  Her 15+ year fight with bipolar illness had taken a toll on her spirit and her will to live.  She was very sick and she knew it, although she didn’t often openly admit it.  There were times, though, when she would open up to me about her struggles.  She knew she was drinking too much and hinted at it being enough of a problem that she didn’t think she could overcome it alone.  She was also very thin, not eating, anemic, although for some reason I never directly confronted her about her obvious eating disorder, which always manifested when she was having an especially fierce battle with her inner demons.  Since she lived alone it was hard to know exactly how sick she really was, but I suspected she spent far too much time alone, self-medicating with alcohol, not eating, willfully missing doses of her anti-depressant.  Whenever she’d call me especially distraught and overwhelmed, one of the first questions I always asked was “Have you been taking your meds?”  Frustratingly, maddeningly, she’d often take them until she felt better and then stop taking them regularly, further contributing to her highs and lows. 
She talked about going somewhere for intensive, in-house therapy and rehab for several weeks.  She knew she was spiraling out of control and that she couldn’t stop the downward spiral alone.  She also knew how expensive such treatment would be.  She’d done the research. She couldn’t possibly afford it and didn’t dare come out and directly ask our parents for help paying for treatment.  She didn’t have any assets to speak of that she could borrow against and was already stressed financially.  Besides, there was her job to consider, and she worried about what reason she’d give to her employer for needing such an extended absence- about how it would affect her job security. 
Instead, she agreed to start seeing a therapist again.  Even paying for those visits was burdensome for her.  I remember looking through her checkbook after her death, seeing copies of checks she’d written for therapy, realizing what even that minimal amount of treatment had cost her out-of-pocket.  She needed so much more.  Cost shouldn’t have been the deciding factor, but it was for her, as it is for so many.  Part of me understands the utter defeat she must have felt, the overwhelming burden of how sick she was, knowing what it would really take for her to get better and feeling that it was out of reach. 
A National Survey on Drug Use and Health published last year showed that of the 45.9 million adults with mental illness, fewer than half receive counseling or treatment.   Receiving and paying for treatment of mental illness and/or substance abuse should be no different than receiving treatment for physical illnesses. Treatment outcomes for those with serious mental illness are comparable to outcomes to general medical or surgical treatments for chronic medical conditions.  In fact, treatment outcomes for common surgical treatments like heart disease have an approximate 40 to 60 percent success rate.  Success rates for early treatment of mental illness are 60 to 80 percent (Health care reform for Americans with severe mental illnesses. Report of the National Advisory Mental Health Council. American Journal of Psychiatry 1993; 150:1447-1465).

It’s too late for my sister to get the help she needed.  It isn’t too late for the millions of others who are struggling with mental illness and substance abuse.  So far, I haven’t been political in my blog posts, but this cause is much too personal for me to not raise awareness.  Every day for the rest of my life I’ll live with the devastating result of a life lost to suicide because of untreated mental illness.  I don’t want anyone else to have to face the same consequence.
May is Mental Health Awareness Month.  If you care about mental health parity, I urge you to please contact the President and ask him to issue the final regulations for the Mental Health Parity Law.  You can email the White House by following this link http://www.whitehouse.gov/contact/submit-questions-and-comments.  Under subject select “Health Care” under “I Have a Policy Comment”.  You can also call the White House Monday-Friday, 9 a.m. - 5 p.m. and leave a voice mail message at this number 202-456-1111.
Thank you.

Saturday, April 14, 2012

Honoring a Life Well Lived

Ten years ago today my friend Todd died.  In the paper today was this tribute from his family.  It was perfect.  Every word they wrote about him is absolutely true.  I really don’t know of anyone who knew Todd that didn’t like him.  He was a friend to everybody.

We met in 1st grade when I moved to North Ogden.  He lived two doors east.  His older brother was my older brother’s best friend.  We were in the same grade, and our older brothers were also in the same grade.  On snowy or stormy mornings the four of us got rides to school together.  Because my mom had her hands full with five little kids and his mom had two, it was usually Todd’s mom Mel that drove us.  The best days of all were when we got to ride in the white Corvette.  I think it was a ’74 or ’76.  I don’t remember for sure, I only remember that it was cool.  It didn’t matter that two of us had to squeeze into the front passenger seat together while the other two lay down in the back, contorting to fit in the cramped space.  Who else was cool enough to be dropped off  at school in a Corvette by a glamorous woman who even at that early morning hour always had full make-up and her false eyelashes on?  Sometimes her commercial voice-overs would come on the radio during our ride and we’d all listen, completely enamored with her fame.  Well, at least I was enamored.  I don’t know if the boys were equally enamored.    

Todd was my first crush.  For most of elementary school I was convinced he was the man I would marry and have babies with.  I think there were periods when he also had a crush on me.  Somehow we never seemed to have crushes on each other at the same time.  Maybe that’s because even then we somehow knew we were destined to be just friends, which in the end was even better.  Still we learned how to flirt with the opposite sex by flirting with each other. 

We played a cat and mouse game of periodically chasing each other through 6th or 7th grade. During the summers when my friends and I would sleep outside in the backyard, it was Todd and his friends who would sneak up on us, scaring us and making us squeal with fear mixed with delight. 

By junior high we’d settled into a very comfortable friendship, bordering on a brother/sister relationship.  Our homes were very familiar to each other.  Even today I remember his home phone number from those years.  His brother was often at our house.  He’s ever present in my childhood memories.  Many were the evenings when I was sent up the street to knock on their door to tell my brother dinner was ready and it was time to come home.  There was an easy familiarity between our families.

Later when my parents separated and divorced, it was Mel who was there for all five of us kids, in different ways, at different times, but always in exactly the right way.  Her love, compassion and concern was a lifeline to me during those years.  It’s no wonder she has such amazing sons.  They learned by example from her. 

In high school, Todd and I shared many classes and frequently passed notes back and forth to each other during classes.  We told each other about whom we were dating, why we liked them, who we were going to high school dances with and so many other meaningless tidbits of high school life.  We were buds.  When Todd met Amy, who would become his wife, I remember him telling me how in love he was with her.  When he talked about her, his face glowed.  It was obvious to everyone she was “the one”.

Later in life after we’d both married, we saw each other less frequently but our friendship endured.  Through fate or coincidence,Todd was in the hospital recovering from a treatment for his newly found brain tumor at the same time that my brother and sister-in-law had a baby.  I visited Todd and Amy while I was at the hospital waiting for my sister-in-law’s labor to progress.  I vaguely remember talking about his tumor with him then - what he was doing for treatment, the long-term prognosis.  Nobody was more optimistic than Todd about his likely outcome.  It was almost impossible to think about his tumor being terminal because he had such a positive attitude about things.  His optimism was contagious.  Even a few years later when it was obvious that his tumor was terminal, it was hard to be sad about it because Todd simply didn’t live in a state of pity.  He embraced life, loving his wife and children, working as long as he could to provide for his family, continuing to be a good friend, never losing his perfect smile and cheerful outlook on life. 

Even now, ten years later, it’s hard for me not to get emotional when I think about the last time I saw Todd.  He was home being cared for by hospice, in the last weeks of enduring the ravages of an aggressive brain tumor.  I knew I had to go see him, but I was terrified.  What would I say?  How would I say goodbye?  Should I even say goodbye?  I didn’t have any idea what to expect or do.  Since we were only 32 years old, we were both far too young to have experience with those type of circumstances. 

I should have known better than to be scared or apprehensive.  The instant I saw Todd he put me at ease.  I don’t know how, since he couldn’t speak at that point.  His words came out as unintelligible, garbled sounds.  I just know that when he took my hand and pulled me close to his face, I was talking to a cherished friend, a friend who even when he was dying somehow made me feel better.  I’ll never forget that afternoon.  The sounds, sights and smells of it are embedded in my memory.  Mel was at the sink slicing strawberries for Todd’s girls while they were in another room with a hospice worker.  Sometimes the smell of freshly sliced strawberries takes me right back to that moment.  I’ll be forever grateful that I overcame my fear and went to say goodbye.  It was important for me to honor our friendship, to let Todd know how much he meant to me.  I hope somehow he understood that. 

A few months after Todd died, I visited his wife in the hospital to see his first and only son, Todd Jeffery.  That was another hard moment, but just like Todd, Amy managed to put her own feelings aside and acknowledge the bittersweet happiness of the moment. Like Todd, Amy is a sweetheart.  Today, ten years later, through the magic of Facebook, I’m fortunate enough to be able to see Todd’s family grow up .  Seeing pictures of his daughters and son never fails to put a smile on my face.  They’re beautiful, living legacies to Todd’s amazing life and spirit.  There aren't many people who at the age of 32 have lived such a good life or made such positive, lasting impacts on so many.  Todd was one of the few.  He truly is remembered for the way he lived his days, and he lived his days well.  

Friday, April 6, 2012

The Cruelest Month

Easter used to be my favorite holiday and breathtaking sunsets that stop me in my tracks never used to make me sad.  Those are just two examples of things that changed when Julie died. There are thousands of other things that will never be the same for me.  

This year what would have been Julie’s 36th birthday falls on Easter Sunday. The day will be a bitter reminder of my loss.  My sister, our family’s Spring baby, whose birthday has always been celebrated during glorious April when the flowers are in bloom and the world is reawakening after a dreary winter, is gone.  Having to face her birthday on Easter, a holiday filled with symbolism about life and rebirth seems especially cruel.  

I’ve spent most of this week trying not to focus on what was coming.  I should be over it by now I tell myself.  It’s been almost two years, why now? Why this year?  Last year it wasn’t this hard, but last year her birthday wasn’t on Easter.  Two years ago we were together for Easter in Colorado.  I wrote about that weekend here.  My contentment was complete.  I never dreamed something I cherished so deeply, our sisterhood trinity, would end so abruptly, without warning or choice.  

Amy and I tried to prepare ourselves for our sister’s birthday, knowing we’d both be feeling bereft and unmoored when April 8 rolled around.  We made plans to run a half marathon together in San Francisco on the 8th.  It would be the perfect way to remember Julie and acknowledge her birthday.  

I knew better than to register for an early spring race.  Winter training is challenging for me. I’m a fair weather runner and despise running indoors on a track or treadmill.  I also have severe spring allergies that trigger my asthma. Two weeks ago I was literally sick in bed with asthma, struggling to breathe.  Needless to say, my training has suffered.  Amy too has struggled to find the time to train.  Earlier this week we both admitted we were far from ready to run 13.1 miles and neither of us felt like walking the course rather than running it.  We cancelled our trip and I was once again left trying to figure out how I was going to navigate an emotionally loaded day.  

Celebrating her birthday doesn’t sit well with me.  What is there to celebrate?  I wish I was in a place where I could once again celebrate the day she was born, but I’m not there yet.  Her birthday is a sad reminder to me of how young she was when she died--a life cut short, defeated by depression and hopelessness.  If she were alive, I’m almost certain she wouldn’t be celebrating it either.  She didn’t like being reminded that she was growing older and was still unmarried and childless.  Her birthdays in recent years were reminders to her of all she had failed to achieve.  Sure, we did the cake, candles and singing.  We celebrated her because we didn’t see her in the same harsh light she saw herself.  We adored Julie, and her birthdays were true days of celebration for us, a day to acknowledge our thankfulness for being blessed with our beloved sister, daughter, aunt, granddaughter, niece and friend.  

Julie on the dance floor - January 2010
Well-meaning friends have suggested that I remember Julie by celebrating the way she would have.  Ha!  Julie would have been goaded and cajoled into going out, resisting every step of the way.  She would have most likely chosen a country bar with plenty of cowboys, maybe the Grizzly Rose in Denver.  Then she would have started shooting tequila.  After about three shots she would have been surly and ready to start a fight.  Either that or she would have been up on a table shaking her booty, showing off her exceptional dance moves to an appreciative audience of men until I found her and convinced her to come down from the table top. Been there. Done that.  

Yep, that was my sister.  Sweet, funny, silly and more than a little unpredictable.  She was the one who after refusing all night to come out and join my friends and I on the dance floor, ended up dancing solo to Pat Benetar’s Heartbreaker, while everyone stepped back and watched.  After ending her dance with a big air guitar flourish she announced, “Thank you very much Ogden! I’ll be here all night!”  

Instead of celebrating her birthday, I’ll instead be remembering and acknowledging.  Acknowledging my loss and how much it hurts and always will. Recognizing that loving someone so much that you’d do anything to save their life is futile if they don’t love themselves enough to save their own life.  Acknowledging that Easter will never be the same for me, that beautiful sunsets now give me pause, making me sad that Julie gave up on living, choosing to ignore those small moments of grace and beauty like sunsets and spring bulbs in bloom, blowing out birthday candles surrounded by loved ones, and being nuzzled by your dog, all of which make life worth living.  Remembering all of the happy times we spent together--our silly sister moments, miles logged together running, walking, dancing, hiking, celebrating, loving, living.   

Ready to see Dwight Yoakam in concert at the Grizzly Rose in Denver
The night before running our first 1/2 marathon together - Vail, Colorado 2009
Showing off our footwear to mom

Super Diamond concert in Denver 

We did it!  Celebrating finishing the Georgetown to Idaho Springs 1/2 marathon
Hiking in Zion National Park - October 1999
Thanksgiving in Utah - 2008