Lightening the Load

Sometimes life seems to be burying us alive.  So cliché, but kind of true.  I haven’t been posting for a couple of months.  It just seemed like there was no time.  I have felt life weighing me down.  I have a friend who fell ill over a year and a half ago, and living two doors down, a lot of the burden has fallen on me to “arrange” things.  Without close family, children, or living parents, she is virtually on her own. A few close friends (along with a brother who lives up north who is fifteen years her senior) and I have managed to help her finalize a divorce, close down a business, take her on four over-night trips to Mayo Clinic, get court orders for guardianship, sell two beach condos and her home, and get her moved into a temporary home until permanent choices can be realized.  She has zero short term memory from brain damage due to Autoimmune Encephalitis. 

The emotional “toll” it has taken helping her through this process, and being the “go-to” friend due to my close proximity, has been profound.  I was expecting when we finally reached the closing date of her home on May 5th, after completion of packing, storing, having an estate sale, etc., that I would feel a huge relief.  What came instead was a feeling of intense sadness, allowing myself to now dwell on the fact that my friend’s life as she knew it, was over.  I had to keep those thoughts somewhat at bay to get through the process of taking care of the “business” of her life.   Now I can move back to being a good friend, and not “running her life”, but having to accept what it must be like for her to wake up everyday and not realize what has happened to her is almost physically painful.

Trying to improve my sense of gloom, I dove into a project of my own…cleaning out my office and dressing area.  I like things fairly neat, and when disorganization creeps in, it starts depressing me.  I needed a “feel good” fast.  Within four days, I had removed everything out of my office area and dressers, sent three pieces of furniture to auction, taken out bags of items to donate or throw away, and called in my painter.  The result was a sparkling new canvas to set up my office and have the new dressers and dressing table delivered.

Cleaned out office/dressing area… too bad it can’t stay just like this!.Dressing Room 

New  dressing table                                                             Dressing Table

It has also motivated to go through my entire house, room by room, and unburden myself of unnecessary “stuff”.  After the past five years of dealing with closing down my mother-in-law’s house to move her into assisted living, packing and moving my mother’s house into a senior living  apartment, and now packing and moving my friend, I want my house to be simplified.  I know it’s old news that relieving yourself of extra “stuff” is liberating, but I am here to testify that it is so.

My mood lightened considerably with just that one area of improvement…therefore I need to keep going.  So tomorrow I have a professional organizer going through my entire house and we are going to prioritize areas that need purging.  (I have one of those houses that looks perfectly neat, but just don’t open drawers, closets, or look in the garage!).  I feel better just knowing what’s ahead and that one day my children will be thankful!  Here’s to “lightening the load”!

Happy

Trying to Keep the Glass Half Full


I have always considered myself “happy”…as in I tend to see the glass half full, not half empty.  I’m not saying I have had a perfect life, and I have my “sob” stories…but all in all, I tend to feel happy!  I loved my childhood, my family, and my life in general.  I have been blessed to not have a tendency to dwell on the unpleasant stuff.  I guess I have been able to see the “big picture” and all in all, it’s been a great ride.  I had a great career for 20+ years (then had an opportunity to enjoy a “second” career), I’ve been married over 27 years (after an early divorce…see not perfect), and I have two great young adult kids (drove me nuts at times, but don’t they all).  I also have had the ability to “go for it” when I want to pursue something new.  Now I could go and dissect each of these areas and find plenty of not so great issues, but that’s not my inclination.  I basically, feel blessed.

But… and here it comes, I have to admit…my happiness is being challenged. I read recently where someone mentioned a “sadness” had crept into their life.  All the family and friend’s difficulties and illnesses…the declining health of an aging parent bringing home the inevitableness of it all.  I had to admit, I feel “sadness” more often, and it is not that familiar to me.

There comes a time in life, I am learning, that things begin to “pile up”.  Here I am, at the Baby Boomer cusp of turning 60, and I am living out a dream of owning property where I can have horses in my life again.  I have born and raised my children. My oldest (son) has graduated with a viable degree and is working and supporting himself.  My daughter is thriving and making straight A’s at a competitive University, and is in a great relationship with a guy we love.  I am grateful and have much to be thankful for.  The counter balance, however, is that simultaneously I am witnessing the reality of evolving life.

There is the beautiful long-time acquaintance gracefully battling lung cancer, that has recurred and spread.  There is my sister-in-law (she lives on the opposite side of the country) who is juggling my failing mother-in-law (we moved her from assisted living here to where my sister-in-law lives so they could spend some last years together) and her husband who is now battling a difficult cancer. My 87 year-old mother needs increasing attention.  After my Dad’s death in 2012, we got her house sold and she moved to an independent senior high rise that she is enjoying, but she gets lonely.  On top of these scenarios, I have been watching my close friend of 30+ years, lose the life as she knew it, over the past year and a half.

In September of 2013, I noticed my friend Debbie was “forgetting” things. Every recent thing. She is newly divorced, has no adult children or living parents.  It would be her close friends and far away siblings (who live in the Northeast and are decades older) who would be trying to navigate this crisis.  After many hospital stays, and insistence on our part (after researching and forcing the doctors here to “hear” us), she was finally diagnosed with a rare form of Auto-immune encephalitis. (Anti-NMDA receptor encephalitis). Her antibodies had attacked the two frontal lobes of her brain.  By a miracle, we found information on the internet, and a book  just published in 2012 chronicling the experience of a young New York Post Journalist, Susannah Cahalan, who had experienced this nightmare.  The book,  entitled “Brain on Fire” takes you through her journey.  She, with the determination of her wonderful doctor, Dr. Souhel Najjar, eventually recovered.  Dr. Najjar has been trying to help spread the word of this rare and often misdiagnosed disease.

Through the help of a newly formed advocate group out of North Carolina, The Autoimmune Encephalitis Alliance, started by families and patients affected by autoimmune encephalitis,  we got Debbie admitted into a treatment program through Mayo Clinic.  After four, two-day trips to Mayo clinic with her, and treatment carried out here at home, her prognosis came back bleak.  Her treatment stopped the anti-body attack, but her brain’s two frontal lobes (responsible for short-term memory) would be permanently damaged by the brain swelling from the encephalitis. My friend’s Debbie’s life as she knew it is over.  Her new life consists of waking up every day with her intelligence and long-term memory intact, but “feeling fuzzy”, having to relearn through detailed notes, what has happened to her.  If you have watched the movie, 51st Dates, you get the picture.

Debbie had a successful business.  She was a youthful 62 year-old who water skied on our lake every day.  As I live two doors down, I have taken on a lot of the responsibility of helping with the  “managing” of her life. We have been unsuccessful with her allowing anyone to live with her permanently.  She is fiercely independent, she runs off any of her siblings attempts to stay with her, or have her with them.   I get a lot of the “panicky” phone calls when she forgets where her keys are, her house alarm gets set off, or she is reading her notes on her new reality.  My frequent weekend trips to the farm and horses help me to maintain a balance.  But the texts and sobbing phone calls are always within reach.

Her beach condo has been sold to give her funds to live on, as she has been unable to work for the past year and a half.  The business is now shut down.  Her house is on the market, and the courts have had to establish rules for guardianship.  Through all of this, I have had to walk her through this nightmare almost daily, and help her understand why this has happened to her.  She is a fighter, and every day wills herself to “beat” this thing.  Remember, her most recent memory is about two years ago, when she was vibrant and working.  She has to relearn every day this nightmare that has become her new life.  How this will all end up, and where she will live next is still unknown.  The saddest part for me is that she always believes, after relearning of her condition, that she will recover.

I am trying to accept the things I cannot change, be grateful for all the good stuff.  Trying to keep that glass half full.

Brain_on_Fire_Susannah_Cahalan