…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:

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!!

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!

 

 

 

 

 

 

Just a couple of hours after I posted my last blog post, I got some sweet encouragement in the form of an email from “Tommy Walker Ministries” highlighting a new song written by Tommy’s daughter, Emmie…a friend since 2001 when our families attended the same church in Los Angeles.  I had to dig pretty deep in the Rudy’s Beat archive to find this picture of Rudy with a much younger Emmie in 2009.  😉

Ahhh, and here’s another gem from around 2006…  🙂

I was blessed by Emmie’s song and sent her a text the following day to tell her so…here’s our exchange:

Yay!  She’s such a sweetheart!  Take a listen…I just know you’ll be blessed by it too:

Click Here

I’m grateful for the circle of creative and thoughtful young people in my life who continually remind me whether through music or art or written word that God is present in all things and actively pursuing me ALL my days…PERIOD!  Hallelujah!

It has been awhile since I shared an update on my physical status…although I’m still recovering from the heightened activity of February and counting on regaining some energy, I’ve definitely experienced the gradual progression of this disease’s symptoms in general the past couple of months.  The greatest difference is in my arm strength.  I’m dropping things more consistently and my upper arms have found their resting place on my torso as if my upper body were wedged in a barrel.  I need assistance, for example, lifting up my arms to put on deodorant.  I can still write and type but my fingers are definitely beginning to stiffen.  It’s disheartening, for sure.  I’m beginning to recognize a pattern in my process of this disease…just like with the loss of function in my legs where my symptoms first surfaced, I started with feeling annoyed by my lack of arm strength and then concerned over the practical implications and now I’m starting to feel the emotional impact.  Once again, expectations need to be adjusted and transitions made.  Ugh.

My hospice counselor asked me last month if I was experiencing any anger and it got me thinking about my full circle relationship with anger.  Although anger hasn’t surfaced yet for me in my ALS journey, I remember struggling with anger in particular as a young mom when demands were high and Rolf traveled a ton for his job.  It must have been something I was concerned about at the time because I came across a stack of index cards recently that I compiled with every bible verse on anger that I could find.  😉  I remember reciting those verses over and over, doing the hard work of growing and praying that God would lift my anger.  Not that anger is all bad or isn’t an appropriate emotion at times but I was in need of a big perspective change at that time in my life and my prayers were thankfully answered.   Perspective is key, I think, and Rudy taught us a great deal in that department.  For whatever reason, Rolf and I never asked “Why us?” when it came to life with Rudy…instead we honestly approached it with the perspective “Why not us?” and it seems to be the same with my ALS.  Don’t get me wrong, I have a lot of questions for God but “Why me?” isn’t one of them and anger isn’t my go-to emotion right now.  What I do battle, however, is deep, deep disappointment…and it is, at times, crushing.

I’ve mentioned my disappointment before as it relates to the children and grieving future life with them and their families but lately my disappointment has been centered on the life Rolf and I are so close to sharing.  I turned 53 last week and with Olivia nearing the end of her junior year, Rolf and I are nearing a new season.  The cruel irony is that my life is ending just as we “successfully” launch our youngest.  Ironic because back when the demands of raising a young family were high and finances were low, I dreamt about life with less stress and a little disposable income…I knew all our hard work was going to pay off one day in a season with room to breathe and time to rediscover each other.  Oh, I know, the empty nest years can have their own difficult adjustments and stresses but Rolf and I seem poised to start that transition strong and I’m devastated we aren’t going to be able to test it…and, more importantly, share it.

It’s a vulnerable time…my growing physical limitations are making me feel more and more vulnerable and there is a lot going on in general leaving us all feeling a little raw and fragile.  Will you please pray for strength of heart and mind?  My hyper awareness of mortality and loss and suffering today seems appropriate for the start of Lent, I guess.

My brother sent me this Lenten prayer yesterday and it certainly is a thoughtful meditation as we prepare our hearts to commemorate the death and resurrection of Christ and it seems particularly applicable to me today.

Bless you friends!  Thank you for your love and prayers!!