Life Goes On

It has now been over five months since my sister Shannon passed away of Huntington’s and all around me life goes on.  After years of being beside her through her journey and putting all my energy into trying to always be a good sister to her especially the last three years, there is a strange and unfamiliar inner peace inside me which I have not felt in many years.  My other sister and I did everything in our power to make her life as happy and comfortable as possible.  We showed her all the love we possibly could.

I have many fond memories of Shannon before the Huntington's hit her hard.  The role of big sister was not something she took lightly and she always set out to be a good sister to me.  I have many amazing things she gave me through the years to remember her by, from multiple "sister" coffee mugs to warm snuggly blankets with cats on them. I am pleased to have inherited her cross stitch too.  I can feel her energy and love inside each of her many gift she bought out of love for me.  I feel her love when I use my coffee mugs too.  And she always bought me the funniest birthday cards I am glad I saved as many as I did.  I saved them because they were funny and now they have become another reminder of her love for me.

She was a huge holiday person same as I always was so we always had that in common too.  I knew my first Christmas without her was going to be really hard and it was.  That is true of all people who have lost loved ones not just us. With every single person I know that celebrates Christmas there is a joy for the people who are there to celebrate it with them then and a keen sadness for those who are missing forever and watching from heaven.  My heart breaks for their families left behind because there are the ones who suffer indefinitely.

I am focusing on the happy loving memories I have of her instead of the last three years.  I find looking at pics of her really hard still especially the pictures of us as kids.  There is one of her holding me up so I can blow out the candles on my second birthday cake that is priceless and heart wrenching at the same time.  She is holding me in a few of the pictures I have from that time period.  I can’t believe she is really gone in one moment and am overcome with tears and sadness when the truth hits in waves again and again.

Death is such a hard thing to accept when it happens.  But life goes on and there comes a time when we need to be able to dry our eyes and rejoin the living.  I did not leave my house for a month after she passed away as my tears were over the top most of the time and my need to hide was very strong.  They can still come just as suddenly five months later.  I know from past experience that time passing will not take that grief away but it will lessen it to a more manageable level.  Time is the only healer for such sadness.  Losing my three mothers close together was the greatest loss of my life until my big sister passed away.  It is so important to live life while you have the chance and tell people you love them while you can as time is precious.

My stress level dropped right out of sight after she died as that constant stress, heavy sadness and worry was suddenly gone.  A huge weight was lifted off of us and the healing could now begin.  In some ways my HD has improved and in some ways it is getting worse.  I am inaccurate a lot more these days. My filing system can go haywire at times.  Information can be misfiled coming in and going out which common for HD people.  I am also easily confused sometimes so I made a point of reiterating things that are important.

Some people with HD can be seen as lying when they are constantly misquoting misinformation if the people around them are unaware.  My sister said inaccurate things all the time and that looked like lying to some of the people she came in contact with in her daily life.  Her memory was really bad go she would often forget to do things she had committed to.  Which made her look untruthful and unreliable.
I am still amazing my doctors at my slow progression and they credit my extra weight for part of that so I always need to watch my weight as my metabolism is extremely fast these days. Years ago in between a two year appointment span I had lost 50 pounds in that time out of nowhere. So now I make sure to watch my weight more carefully to make sure I do not slip down too far like that again. I eat a lot of proteins these days to keep myself running. And my home baked good and sugary stuff to keep my weight up as well.

We will all be watching the Isis HD trials these spring with all our fingers and toes crossed that the gene silencing and turning off the defective gene is indeed the cure we have been waiting for.  They have done it successfully in ALS people already.  There will be dancing in the streets world-wide when they prove this works not only for Huntington's as well but all the other dominant gene neurological conditions as well.  Modern science comes in leaps and bounds.

I always without fail feel a lot of survivors guilt each time I lose a family member or friend to Huntington's while I am still alive and for the most part well.  Why all of them and not me after sixteen years of being diagnosed?  I know back then my HD doctor said if I could eliminate all the stress in my life then I stood to add years onto my emotional life later and that seems to be what I have done.  I have not had work stress in years, no relationship stress, I do not have kids either or grandchildren by extension. While I do not have the traditional stressors I have still had different stressors like a sick sister and other heavies and multiple deaths to deal with.

I still feel honored to be alive and have another day to live large and try to get a bunch of things off my bucket list.  I have never been to a ballet before but after tomorrow night that will be off my bucket list.  Thank you to my sweetheart for the thoughtful and amazing Valentine’’s day gifts of the ballet ticket and the roses; they were beautiful.

Life is for the living.  And I imagine my stories will get more upbeat and happy as time passes as this is no longer a blog and journal about my sisters dying but one of life and living.  To have no regrets if and when my time comes is my life path.  I am looking forward to doing a bunch of lake fishing this spring, summer and fall. I am going to sing with my sister and friends, and my guitar and my stereo is now out of storage and I am playing my music.

I am going to go swimming in a few different lakes here once I get a list of the leech free ones from a local.  I met my first and only leech Canada day last year when I was walking into the lake and had one attach to my leg.  I was not amused in the least.  I was told to just carry a salt shaker to get rid of them ALL when you get out of the water.  Ha ha, not on your life!  I now completely understand the concept of calling someone a blood sucking leech as an insult.  It is leech free lakes or chlorinated pools for this kid in the future.

Thank you to all my family and friends for really being there for me the last 6 months.  Your love and support have helped keep me afloat in some really harsh and sad times.  But the worst is behind me as I head out on another mission of living my life to the fullest.  Pedal down, live it all.  

Remember, "We all have two lives; the second one starts when we realize we only have one."