…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. 😉
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:
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!!
Hold on to your hats, folks, this is going to be a LONG post. If ever there was an event difficult to capture in words, it would be the reunion I enjoyed this past weekend. I spent a gap year in college touring with Up With People and my amazing cast gathered in Santa Barbara over the long President’s Day weekend for our nearly 33 year reunion!
For the unfortunate ones out there who have never experienced an encounter with Up With People, here’s a little background…
What would become known as UWP began in the mid-sixties through regional “Sing Out” performances linked to the Moral Re-armament movement (MRA). By 1968, J. Blanton Belk took leadership and separated from the MRA to create a non-profit, cross-cultural educational organization for the purpose of inspiring young people to make a difference in the world and build bridges of communication between people of all nations through music and community service. By the time I began my year in 1986, UWP had grown in popularity with 5 casts of 120 students each criss-crossing the world every year performing anywhere from venues in rural communities to high profile appearances like the Super Bowl Halftime!
My cast was made up of 120+ students and staff who came from 35 U.S. States, Sweden, Norway, Denmark, Finland, Mexico, Panama, Canada, Thailand, Japan, South Korea, Poland, Ireland, France, Italy, Switzerland, what was West Germany at the time, Holland, Belgium and Bermuda! (Did I leave anyone out? That’s me on the top row about a third of the way in from the left)
Some of the highlights for my cast included performing on TV at the World Cycling Championships, touring the Olympic Village in Colorado Springs, performing special corporate shows in Las Vegas, San Diego and Phoenix, participating in the Muscular Dystrophy Telethon in Canada with Shari Lewis (you know, the Lamb Chop lady) and Pat & Debby Boone, performing for the first lady (Nancy Reagan) and touring the White House, working at the Special Olympics in Connecticut, a meet and greet with singer Natalie Cole and the hundreds of school assemblies and classroom visits we had with children all over the world! 😉
I pulled out my UWP photo albums and memorabilia in preparation for the reunion and discovered this forgotten letter I wrote to my supporters when I returned from my tour. It’s kind of interesting to listen to my 21 year old self try to communicate the impact the experience had on me…
This time around we had over 50 (!) cast mates, a couple of spouses and a handful of the next generation descend upon our small town to “Raise A Ruckus” (*show tune reference) for 4 days in chilly, breezy Santa Barbara.
The weekend began with a group headed to Costco to stock up on food and beverages…5 carts and $1500 later…
Shortly after this picture was taken, I got a text from a friend of mine who works at Costco that read “I just saw a bunch of people who love you so much at Costco!”. Ha Ha I am NOT surprised that random small world connection was made. “Up, up with people. You meet ’em wherever you go.” (*another show tune reference)
The excitement for me built to a fever pitch on Friday as I anticipated seeing everyone that night AND having the boys home for a couple of days!!!! YAY!!!
I heard from several people prior to the reunion that they were nervous about coming…for some it was rooted in the insecurities that come with not having seen this group in so long, for many it was anxiety about seeing me. I totally get it and prayed that any fear or concern people were bringing with them would be wiped away completely once we were together and that is CERTAINLY what happened…
Saturday was another full day of hanging out. The cast assembled mid-afternoon for a circle time centered on ME and extending love and support to my family. Much to my surprise “TrishFest 2019” was unveiled in full!! Ha Ha Although it was very surreal and most humbling to have a significant amount of time focused on me, I felt the enormous love and embraced it all with much gratitude.
We dusted off the old songbook and serenaded each other with our show’s inspiring final anthem…(the kids brought their instruments and jumped in to accompany us with no run through! I LOVE that!!!)
Oh, and just in case you think the singing ended there…think again!
(Thank you Charlene, Deanna and ALL for putting yourselves out there…these videos definitely capture the thoughtful and fun spirit of this group)
The party continued well into the night with entertainment provided by Wilson, Max, J.D., our family friend Jeremy and a handful of others on shaker eggs and tambourines! 🙂
Coast Community Church nearly doubled in size on Sunday morning with the inclusion of the visiting Uppies! How precious is was for our family to share our church community with our out of town friends and vice versa…it was a magical morning of worship and friendship!
The fun continued throughout the day on Sunday and we all enjoyed dinner prepared by this capable crew:
Honestly, the greatest joy for me throughout the weekend was sitting back and watching small groups gather all over the house and backyard at any given time literally soaking each other up…there was so much catching up to do and laughter to be shared! Everyone really took advantage of every second!
I was sharing all about the reunion with a friend and she stopped me mid-sentence and pointed out that I used the word “freedom” several times in my description of the weekend and how poignant it is that I’d feel so free while being so restricted physically. I love that observation. It’s so true! Without the typical distractions of daily living, I have the freedom to truly live in. the. moment. FULLY and boy, I sure did that all weekend. I also experienced a refreshing freedom to speak bold words of encouragement into the lives of my friends. Not that I haven’t said encouraging things in the past but it hit me this weekend how many thousands of opportunities I missed out on in my lifetime to speak into the lives of others because I was shy or didn’t want to intrude on a person’s personal life or was too busy to sit and really observe what was going on around me. There were no such obstacles this weekend and it was a rich, rich time for me emotionally. In the same way, I felt the freedom to communicate my love but it didn’t feel sad like “this is the last time I’m gonna get to say it so I’ll say it” kind of thing…just a real genuine, “grab your face and look you in the eye” kind of thing. Of course, this is an easy crowd to encourage and love but there is a precious shift in perspective, nonetheless, when you live your emotional life knowing you have absolutely nothing to lose.
So now what? I kind of feel like 21 year old Trish after the tour ended not knowing where to go from here…my heart is so full, my body is so tired, I’m sad to see all the social media posts of everyone headed home and I so wish I could go to our 35th in Scottsdale, AZ! Who knows, maybe I will be able to. 😉
I asked Rolf what his take away was from the weekend and he said it was good for he and the kids to see me loved so well and how touched he is by the extravagance of Cast C! So sweet.
Well Cast C, you heard from the big guy himself! You are a loving and an extravagant group and we thank you for lavishing all that goodness on us! As I said in our circle time, the circumstances suck and I would give anything for things to be different but I am tremendously grateful for the time and presence of mind to be able to say “I love you and I’m so grateful for the remarkable history we share”.
P.S. I was so busy “living in the moment” I didn’t take any pictures this weekend so thank you all for the pictures and videos you shared with me…I give you photo and video credit! 😉
I recognize I ended my last post boasting about how gracefully I’m letting go of certain things in the ALS process and today’s post is about the not-so-very graceful subject of jealousy…it’s a contradiction, I know, but both are true…
Jealousy actually isn’t something I struggled with in my life in general…especially in recent years. I’ve certainly had my share of insecurities but those insecurities rarely manifested in being jealous of others which is why I’m surprised by the jealousy I’m experiencing now. It isn’t a constant feeling but is just under the surface and rears it’s ugly head from time to time…it surfaces when I’m out and about and see able bodied people busily going about their day without having to think twice about how they’re going to navigate their day…it surfaces when I swipe through my FB feed and see all the fun life being lived…it even surfaced this past week as I watched all the Kay and Zales Valentines commercials on tv wishing I could build my “Silver By Trish” business and fulfill by dreams of being the next “Tiffany and Co”. Ha Ha Ha Did you catch that? I’m jealous of Kay and Zales Jewelers?!?! That’s silly!
At times, though, it’s also more personal…I’m jealous of my friends who are living out or anticipating life transitions that I long to experience, I’m jealous of those I watch seemingly making all the “wrong” choices in life and yet are also seemingly thriving (OUCH! Super judgmental, I know!! Forgive me!) and I’m jealous of Rolf and the unique relationship he’ll have with our children in my absence. Eew! I don’t like the way any of that sounds but it’s good to speak honestly because I’m learning that jealousy loses a good bit of it’s power when it’s exposed. And just in case you fall into any of the categories listed above, DON’T FRET, because I’m also learning that my being jealous has NOTHING to do with the object of my jealousy and EVERYTHING to do with… me. It’s my burden to work through and grow from! Being jealous and bitter isn’t where I want to land but I am discovering some beautiful expressions of God’s mercy in the act of confronting and interacting with the dark feelings.
For example, the reason I’m jealous of Rolf also happens to be my deepest comfort in facing death! How grateful I am that Rolf is a good dad, has a close relationship with our kids, communicates well with them and will be living life with our kids for us BOTH!!! What a huge gift!! God has also given me a gift in the area of music…especially as it relates to worship. It’s no secret that leading worship is something I’ve cherished since I was a young adult and is the last remaining commitment on my weekly calendar. With an amazing amount of practical support from my bandmates, I’ve been able to continue to lead worship at my church much longer than I thought possible. My contributions are stripped down though…I’m no longer able to sing lead in most of our songs and I packed away my guitar for the last time this past week…I just don’t have the arm strength to keep up with any kind of tempo anymore. What I can offer musically has been whittled down to a few harmony lines and a strike or two of the tambourine 🙂 and it’s clear that my season as a music maker and corporate worship leader is nearing it’s end. I can feel it coming and it breaks my heart.
God’s mercy in all this for me is the kids. God has allowed life to unfold in such a way that one of my greatest personal heartbreaks is being met with one of my greatest joys…the partnership I’ve had with my kids over the years in leading worship at our church is allowing me to pass the baton of leadership (figuratively and literally) to these precious souls that I know intimately, wholly trust and couldn’t be more inspired by! Wow! What. a. gift. Instead of being jealous, I’m overjoyed! I don’t put this in writing to put any kind of expectation on my children because their journey will be their own and I trust that…this is about me…in this moment…and how God is lovingly dulling the sharp pain of this transition through my kids. It makes me chuckle, really, because it’s not like our kids’ involvement in music is something we orchestrated or pushed in our household…Rolf and I didn’t even invest in music lessons for our kids for heaven’s sake!! I think music was just something Rolf and I valued through our different tastes in music and various expressions of appreciation and we invited the kids to enjoy it with us. Once introduced, they took control of their own relationship with music and are already far more musically literate and gifted than me. Combine that with a thirst for God and, wow, there’s power in that.
(The expression of Wilson’s heart means the most to me in this recent video…at 4:20 especially – sing it Wilson!)
(Max has the gift of making worship FUN…)
(Olivia has a confidence in her expression through singing that inspires me…and how grateful I am that she can sing my soprano parts!)
I praise God for entrusting these three to me and, in turn, I’m able to entrust something I cherish to them – without hesitation. May God continue to reveal Himself through their pursuit of Him and in their offering of praise…individually and together!!! 🙂
A few weeks ago, Rolf received a text from the eldest, grown daughter of our good friends Ruben and Marit explaining that due to an online ordering mix-up, we would be receiving a shipment of Charmin toilet paper intended for her family. 🙂 Rolf offered to send it back and help them get their money refunded to which Sarah said not to bother and to consider it a gift! So sweet!! Rolf told me about his text exchange with Sarah and was surprised by my reaction. He couldn’t understand why I was so giddy over toilet paper…to which I replied, “Honey, you don’t get it. Our entire life together I’ve purchased Kirkland brand TP, this is CHARMIN! There’s a difference.” Completely unaware and unconvinced, Rolf rolled his eyes and chuckled at my enthusiasm. Not long after, Marit (Sarah’s mom) texted Rolf about an unrelated subject and Rolf relayed the TP story to her. Marit responded, “Wow, she (Sarah) really loves the Geylings!!…not just TP, but Charmin!”. Ha! Rolf finally decided there must be something to it but has yet to experience it…we haven’t opened the case of Charmin. I want to use up all our Kirkland TP first because there may not be any going back once that box is opened. We could very well be entering a new era in the Geyling household. 😉
The funny text threads with our friends and the shipment of Charmin that followed made me laugh out loud as well as got me thinking…it got me thinking about the hundreds of decisions I’ve made in the management of our household over the years that the family was never really aware of or cared too much about…decisions which led to my systems of organizing and procedures for daily living that made perfect sense to me at the time but could very well be questioned now as I slowly fade from the scene and new systems are adopted. Many of the decisions I made in the management of our family weren’t particularly important or life altering (i.e. the choice to use economy vs. brand name TP) but they were ALL deliberate…there was ALWAYS a well thought out reason for the things I did – a method to my madness, so to speak – and I now have a strong desire to replay the tape of our family’s life together, if I could, and explain it all so my kids can be assured of my brilliance long after I’m gone. Ha, Ha!
Instead, I put together a little autobiographical photo book for my family for Christmas and in the introduction, I wrote this…”I used to think that when I came to the end of my life, being remembered would be really important to me. I’m realizing I was wrong about that. Even if I were to live a long, full life, I’d be lucky if the memory of me carried on for another generation. What I’m finding to be of greater value over being remembered is being understood by the people I love.” The value I place on understanding myself and, in turn, being understood is high which explains why I appreciate processing through this blog so much or why I fear Rolf and the kids regularly asking “I wonder why Mom (fill in the blank)?” as they comb through the cupboards of our lives together or switch up the systems to meet their needs. Although my mind is occupied with this crazy train of thought and it’s where my heart is now, the good news is that I’m pretty sure whatever legacy I do end up leaving behind will be bigger than the silly questions left in my absence. 😉
On a practical level, I’m actually pretty proud of how gracefully I’m letting go of things that are no longer in my control…I think the emotion and unrest for me simply comes down to grieving the part of me that is lost in the letting go.
Today marks 18 months since we lost Rudy. The 25th of every month has an impact on my heart but today carries a bit more significance, for sure. A year and a half. It feels like a long time and, yet, it also feels like it was just yesterday. My mind and my heart can be transported to that ER in Guymon, OK in a blink and I am there with Rolf, the big sibs and our boy fully aware of what was happening as I experienced it unfold and in total disbelief at the same time.
I only see Rudy in my memories. Rolf is having new visions of Rudy in his dreams…comforting in the moment but heartbreaking in the wake of the dream as Rolf so eloquently describes in his latest poem:
This Is where I see you now.
It’s all I’ve got.
In the last moments of the night You’re suddenly there I rush in As if the yearning would ever allow me to take my time
So aware of the seconds I pull you close The warmth of your cheek Your instant affection your inability to stay still The love of your embrace For as long as you’ll tolerate the interruption in play
I drink it deep Knowing it can only be a moment Readily accepting the cost to come Be it the flood of tears as light dawns Or days fogged in stupor
Remaining motionless I keep my eyes shut Clinging to the lingering wisp of each sensation The smell The sound The touch The weight of your body that just left my arms
you were right here.
What occupies my mind today is the many ways Rudy prepared us for the journey we are on with ALS…the situations are different but the landscape is very familiar and there is a calm that comes with the familiarity. I still wish none of it was a part of our story…I wish Rudy was spared his medical frailties and a life cut so short…I wish I would be spared ALS and the family having to walk this with me. And yet, in the midst of my lamentations, I’m very much aware of our family’s “second-nature” response to life right now…there’s a certain level of “expertise” and confidence with which we are navigating ALS that can be traced back to our boy…part of his precious legacy, I guess.
We miss you desperately, dear Rudy! May you continue to feel the love in our longing for you today.
Thank you for your prayers and extra expressions of love today dear friends.