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The 6 Year Depression

5/12/2019

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You would think I would have this all worked out by now.  Or at least I did.  After living with ALS for 6 years I thought I would have come to a place of "acceptance".  Live my last days out of my head and into each moment.  But that's not what happened.

Living with a "slow progressing" form of ALS, I am considered one of the lucky ones.  I try my best to be grateful for what I do have, instead of resentful of what I can no longer do.  When others see me they see a positive person, an ALS Ambassador with a great attitude, brave and strong.  That is the side I let you see.

There is another side.  One that lives in terror of what is to come.  One who cannot bear to lose control.  One who gets jealous of people dashing into the store, while she waits in the car.  One who wishes she had at least 10 more years pre ALS without knowing what was coming.  One who bears the burden of watching countless others with ALS die, when they were diagnosed after she was.  One who is suffering.  One who feels like a coward, and a fake because she doesn't let anyone see that side of her.  

Anyone but her loving husband that is.  He sees and knows all sides of her.  He watches as his wife slowly loses all parts of herself.  He is by her side as she cries in desperation, devastated that because she is living too long he will only remember his sick wife when she dies, and not the woman he married.  So he doesn't talk about his suffering.  He must be "strong" for her.

The week before Easter was a living hell for both Travis and I.  It did not come on unexpectedly, things had been slowly slipping for months.  While acknowledging that things were difficult, we thought we were doing the best we could, but no, we were both far from it.  Within the same week, we both ended up in hospital.

The best way I can describe what happened, is that after living with ALS for 6 years, the weight became too heavy to bear, and we both broke.

People were shocked.  Nobody knew, many imagined, but we put on a good front, until we could no longer hide what was happening behind closed doors.  Depression.  Both of us.  But not together, we were suffering alongside each other, but ultimately alone.

We have figured out that we cannot only rely on each other.  We needed help.  We were drowning and pulling each other under instead of rescuing each other.  We were each other's everything, but we could not be each other's everything.

I know I'm not alone.  In Jenni Berebitsky's book "ALS Saved My Life...until it didn't" (reviewed in a previous blog post), she mentions though grateful for outliving her prognosis (2 years, she has lived with ALS for 9 years now) there are times when she thinks, "Can we speed this up?  How much longer do I have to endure?".

Travis and I survived and were taught a lesson.  We have accepted help.  It is not fun.  It is hard work.   Recovery is a full time job.  Both of us are now receiving care in many forms; friends, family and professionally.  

We are rising up, being lifted by those whose job it is to help.  It is not a passive process.  We have to engage, participate and accept that we cannot bear this weight alone.

We know that we will be better for it.  Instead of living in a depressive fog, we are committed to working through our pain and fear in order to embrace the rest of what our lives have to offer.

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ALS Saved My Life...until it didn't

5/4/2019

1 Comment

 
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I had the good fortune to be contacted by Jenni Berebitsky's Publicist Lauren, asking if I would be willing to review her memoir "ALS Saved My Life...until it didn't" on my blog.

I felt a remarkable connection to Jenni as she was also diagnosed younger than most, studied art therapy, visited Italy as a "must do before I die" reaction to her diagnosis, has more than surpassed her prognosis, shares my passion for sunflowers, attends ALS walks every year with her supporters, and is also a strong advocate for furthering ALS research.

This book resonates with my journey of trying to find the balance between "showing up vs. giving up", while allowing the occasional pity party.  I felt not so alone in the difficulty of learning to ask for and accept help, as well as how it feels to lose control.  Jenni shares practical tips and tricks in managing ALS as well as how to address the emotional, mental and physical aspects of living with illness.   There are chapters written by family members and friends, offering a perspective for others to navigate their roles of a loved one's terminal illness.  Travis appreciated the one written by her husband, accepting the reality of needing to look after oneself in order to care for your partner.  He especially enjoyed when Jenni's husband stated "she can be a real s*** sometimes", a little too close to home!  

Jenni shares her secrets to living life to the fullest in the face of life-altering events in her debut book.  With humour and vulnerability, Jenni offers practical resources and advice on what ALS patients and their families can expect as they embark on their own ALS journeys.  She also offers guidance for how she manages to live with continuous hope and positivity.

Jenni's journey as an ALS warrior provides the secrets to living a full life after a terminal prognosis, and she details the good, the bad, and the ugly of her ALS journey with charming wit and honesty.  Jenni's book serves as a hopeful guide to all readers for how to move forward in the face of life-altering events.

This year, Jenni is releasing the audiobook version of her memoir, and her documentary, "Grateful:  The Jenni Berebitsky Story", is being released and screened in film festivals across North America.
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    Author

    Carol Jean Skinner (née Sharman)
    born October 19
    lives in Ottawa, Canada

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carol skinner  - rolyskinner@gmail.com
travis skinner - skinnertravis@gmail.com