Fake It ’til you Make It…

…is a helpful life hack at times.  Not that I condone being “fake” in general but there are times when it is helpful to buckle down and imitate confidence until our imitation begins to generate the real deal.  😉  On some levels, I think I’ve been living out this mantra for the past couple of years…especially in the months leading up to my ALS diagnosis when I knew something was “off” but figured it would most certainly get better in time so I kind of “faked” it (or at best “downplayed” it) waiting for the upswing.  Even since my diagnosis, I’ve been able to downplay the debilitating aspects of this disease in public and confidently interact with others regardless of how I was feeling on the inside.  I am, however, crossing that threshold…I can no longer “fake” it.  No matter how hard I try to keep functioning, there is a point in the day when my body just won’t move anymore.  No matter how deep I dig to will myself to keep my mouth moving in a conversation, there comes that moment when my mouth can no longer form the words.  My body has a mind of it’s own.  It’s surreal and I feel like I’m living a scene out of the 50s cult classic “Invasion of the Body Snatchers” but it IS happening.

This has been made clear to me the past couple of weeks as we’ve had a full calendar of events requiring me to interact with lots of groups of people.  “Being present” isn’t something I want to stop doing but I do feel like I need to start wearing a disclaimer around my neck…

“I may not be able to converse like I used to or express all that I’d like to say to you, I may even stop talking mid-sentence, but I’m here…I’m taking you in…I love that we’re sharing this moment…when you give me a hug, I’m hugging you back…when you tell me ‘I love you’, I’m loving you too.”  

I have a voice generating device that will help me communicate needs and wants as time goes on but I’m not quite sure yet how effective it will be, especially in group settings.  We’ll see.  The point is my days of  “faking it” are long gone and the “hospital gown” that is my life is not only untied at this point but flapping wide open with each gust of wind that seems to expose a new reality in this disease’s progression.  Part of me wants to insulate myself and not confront the humiliation of uncontrolled bodily function but thankfully there’s a bigger part of me that could care less…so I’ll be out and about as long as I possibly can, flapping gown and all, you’ve been warned.  😉

Here are just some of my recent outings:

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Celebrating our Global Leadership Connection scholarship winner. 😉
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A very special outing to the Ritz-Carlton with our good friend Tami. 🙂
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Extra fun with Max on his 20th Birthday!
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Grad dinner #1 with the Bethel House ladies!
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Grad dinner #2 with the men!
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A strong show of support at Olivia’s lax game last week!
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Church women’s craft and fellowship night!
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Sharing in the joy of Coach Sam and hubby’s little bundle at the Lax Team Shower! P.S. Rolf and I placed 1st and 2nd in the “draw a baby on top of your head” game!!! I’ll let you guess which one of us won the highest honor!!! Ha Ha
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I just love these girls!
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Soaking up the worship at the SBRM graduation with my former singing partner Darlene and Olivia! So good!!
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Church fundraiser with Oma!

Although I haven’t felt the need for a hired care giver yet, I have grown increasingly dependent on Rolf and Olivia and I am beyond blessed by their innate ability to (seemingly) effortlessly care for me…especially Olivia.  I ask her to do things for me that no 16 year old should have to do but I ask her because she is more than capable and because I genuinely prefer the way she does things…i.e. she puts my hair up in the best high ponies or french braids and there is an awful lot of hugging and high-fiving that goes on during transfers on and off the toilet.  There is no fuss or drama with this girl and I couldn’t be more proud of her many exceptional qualities!  Her options for the future seem endless to me.  So proud of you little girl!!

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As always, I sure do appreciate your prayers…I feel guilty that our friendship is so focused on me and my needs at this point but know my mind is flooded with thoughts of hundreds of people every day and I do pray as I feel led but if you want to send me specific prayer needs, I’ll do my best  to add them to the list. 😉

Love and more love!

 

 

 

 

 

 

5 thoughts on “Fake It ’til you Make It…

  1. You are such a vital part of the kingdom of God. I am blessed to know you. Your prayers are powerful because they come out of your testimony and release the power of God over our lives. Thank you for doing what God calls you to do even in these changing times. Your presence is felt even without a word. Our God is not confined by being able to voice our prayers, he hears them before they are even spoken. You continue to amaze all of us and teach us through your journey toward heaven.❤️

  2. Yes, Trish you are incredibly busy and so loved. What a lot of celebration events!!! Your blogs are written so honestly and well and help me to understand what’s up with you. Thank you for sharing your thoughts. In addition to everything else about you, you’re a gifted writer for sure. We continue to love you and pray for you. HUGE HUGS YOUR WAY!!! Joan Sent from my iPhone

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  3. Trish, you are so wonderful! I love your post and the honesty with which you delivered it. The pictures are wonderful and I continue to feel like I am a little part of the festivities and outings that you and your precious family are doing. You have an incredible gift and I thank you for continuing to share it with us. Your precious Olivia is a beautiful example of living one’s life to the fullest, just like her precious Momma! We will continue to lift you up tomorrow in our staff prayer at 10:30am. I will share with them this post as well. Please know you are always in my heart and thoughts and i will continue to be in prayer for you and your family. I love you! Melani

  4. Trish,
    Thank you for sharing your heart. Gods hand and your firm faith in the middle of your struggles are speaking so much to my heart and push my faith with every word! I am sad that our lives have not crossed more since our SBRM days so thank you for letting us in via Rudy Beat. You are prayed for and loved up here in the Valley! Come up anytime! We are a world away and yet just over the hill.

    Krista Sue, Shawn and Benjamin

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