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The 6 Year Depression

5/12/2019

12 Comments

 
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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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12 Comments
Jen Biscope
5/12/2019 05:26:06 pm

Carol, Thank you for sharing the private struggles that you and Travis have been going through. You are as giving and as open with your heart as ever you were. So proud of you for accepting help and making your mental health an urgent matter. As we both know it takes a strong person to do that. Hopefully your words will inspire others living with mild depression or episodic depression to get help too. All love and happiness to you dear old friend xo

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Josee Anne Gauthier
5/12/2019 08:44:47 pm

Big hug. Xo JAG

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Liz Brookes
5/13/2019 01:48:47 am

You are so eloquent, Carol. I can’t imagine how you are both coping, but I am sure that you will find you’re way through this mentally and get to a place of peace and happiness. There is a lot of love out there for you both! XOXO

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Sacha
5/13/2019 05:36:01 am

Carol. What a brave and generous thing you are doing. Sharing your journey so openly and courageously. Do let that help and love in - allowing others to help actually takes real strength, as you have shown us all. Sending much love...

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Keith
5/13/2019 05:20:57 pm

You both continue to be inspirations. See you soon. Love.

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Jade
5/16/2019 01:20:24 am

Dear Carol,
You remain inspirational on so many levels. Human, honest and strong. I shed tears for your pain and gratitude for your honesty. Words cannot describe accurately how I feel for you. Sending love and peace, Jade xo

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Jenni Berebitsky link
5/17/2019 09:40:11 am

Amen Sister! - From another “lucky” one.

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Celia
5/17/2019 08:08:25 pm

Dear Carol, Your courage and the sharing of your pain is so brave and generous. I truly believe that Maya Angelou was right when she said "There is no greater agony than bearing an untold story inside of you". The courage it takes to share it is immense, and I cannot believe how strong you are. Sending you and Travis love. C X

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Joanne Haddad
5/17/2019 09:41:52 pm

Gees Carol. ALS sounds like you're aging in fast motion. You experience unimaginable changes in your body and thoughts, at such a rapid, dizzying pace. While the rest of us lament a new achy hip or occasional dropsies, or not being able to open the jar of pickles anymore...most of us are such complainers. But YOU are a superstar as you manage the unsurmountable with poise and Grace. You and Travis are exceptional humans living with shitiest shit of all. You have always been, and and continue to be my inspiration. Thank you for sharing the raw, depth of your despair. It sucks, I know but appreciate that you let us in. Love xx

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Thalia
6/1/2019 06:16:57 pm

My dear sister, I’m not sure if you’re aware how much strength and courage it takes to be so open, to share a part of yourself that doesn’t SEEM “brave and inspirational.”

I’ve wondered occasionally if it’s not overwhelming for you, being so highly and widely admired, even though it’s well deserved. When you achieve something extraordinary...that can be a lot of pressure. Perhaps sometimes you’ve felt that you now have to be superhuman, and like it’s no longer OK to just feel what you feel (tired, depressed, angry, sad and scared)—never mind admitting to feeling that way publicly.

And yet...ironically, there’s so much bravery in admitting to being an ordinary human being (who knew?). Not to mention, so much generosity of spirit. Your openness has made it just a little bit easier for so many who are struggling to make peace our own fears and frailties.

So, I’m not trying to be an a**hole here, but even when you are coming forward in all your wretchedness, you are still brave, still inspiring, still extraordinary. 🙄😁

I joke, but I’m not kidding, Carol. I am so sorry that you are going through something so unimaginably painful. But the way you’ve chosen to live through this experience is meaningful. You are making a difference. You’ve made a difference to me. And I thank you.

Loyally, Thal.

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Patti Hancock
6/7/2019 11:12:40 pm

Hi Carol, Im not even sure how I landed here reading your blog and this post, many things have been said above. Letting you know that you are an inspiration to many. Sad that we struggle in silence, not waning to burden others. Glad to hear you and you hubby are both receiving extra support and care. Such raw vulnerability between you can only enhance your connection. Sending you blessings and strength.

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Heather
6/28/2019 08:11:50 am

Love all the love that this post inspired. I thought I had commented before but I thiink I got lost in trying to find a TEDTalk that I wanted to share back... long story short (too late): with you, always, all ways xxoo

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

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