Back in the day when it was uncool to kiss your mom in public, my kids had two options. They could either voluntarily give me a quick kiss on the cheek OR they had to endure a big attention-seeking kiss from me that often lingered way too long. I thought about that when Max headed back to school a couple of weeks ago. I laid motionless as he hugged and kissed me good-bye. Oh how I longed to wrap my arms around him, give him a big kiss and linger…for a really long time. I sure miss those simpler days.
I experienced a new first recently. I said “F&ck you!” to Rolf in anger…first time in 27 years…and, no, I wasn’t angry at my disease, I was straight up angry at Rolf. Fortunately the visceral impact was diminished quite a bit by the fact that I had to repeat myself five times and ultimately spell it out to be understood.
Speaking of visceral experiences, I also recently thought a little too long about taking my life. I can honestly say I have never felt that level of desperation in my lifetime. The urge passed and, of course, I can’t physically do it anyway but it is a fleeting thought made more complicated by the fact that physician-assisted suicide is legal in California. I know that a lot of people worked hard to get that law passed in 2016 and it brings comfort to some but selfishly I wish it wasn’t even an option because it feels like a strange carrot being dangled in front of my suffering body. That’s not how I want my story to end.
I spent a large portion of my adult life working hard to preserve life and I always lived with the mantra, “Where there is breath there is purpose.” In a perfect world I don’t think our bodies would outlive our minds or our minds would outlive our bodies. I envision we’d all just go to sleep and not wake up when our time came. But the world isn’t perfect and my convictions are being tested beyond what I ever dreamed. I’m learning over and over that life is one big exercise in discovering purpose and beauty in all the imperfection. I want to live my life out naturally and experience the purpose of my final moments in word but the living it out is hard and frightening. It’s a classic “easier said than done”. 🙂 Please pray for courage and joy and laughter and all things light and hopeful. I said to Rolf and a friend the other day that we won’t get through this unscathed or without a few war wounds along the way but it doesn’t have to define how this story ends. I will continue to count on there being purpose in every breath…especially when I consider who the Giver of my next breath is.
But, you know what? Even if my mantra is untrue and I actually outlive my purpose, I have to remind myself from time to time that there is great value in being present if only to see purpose being lived out in those I love, like I did this weekend watching Wilson preach…
As the summer winds down the activity level in our household is ramping up. Back-to-school shopping, garage storage reorganizing and car decorating are all indicators that Max and Olivia are ready for the new school year. Olivia headed off today for her first day of her Senior year with a giant smile on her face. Max is dutifully organizing his boxes of college gear and getting packed up for his return to Point Loma on Sunday. Wilson is busy keeping in tip-top physical condition with his daily workout regimen and ruck-marches and with Rolf at work that leaves me to hold down the fort at home. I have slowed down to a literal standstill making my fear of missing out escalate to an all-time high. Just this morning, for example, Rolf and Olivia went out to take the traditional first-day-of-school pictures and it was so hard for me to not be out in the middle of it. The family has their full days of activity, constantly coming and going (as they should and as I want them to)…I watch them come and go with a deep longing to be a part of the action. Unfortunately this is the new normal and I better figure out a way to be at peace with it before it drives me stark mad.
A few months ago I mentioned that I got a speech-generating device. One of my frustrations has been the lack of technical support I received from the company. My speech pathologist encouraged me to work with the technology before I actually needed it but the company rep with whom I was supposed to train was never available. ‘Turns out, it’s all a moot point after all because I lost use of my hands and my ability to communicate effectively at the same time. As a result I am now in the process of getting eye gaze hardware installed in the unit. It is very intuitive and easy to use and will be a game-changer for me in my ability to communicate my needs so please pray for a speedy response from insurance and all the powers-that-be. I really would love to have this resource while I can still move my eyes. So much of this process has been trying to get ahead of and prepare for an unpredictable disease which is particularly difficult when you’re also trying to conserve your energy for things that really matter. If only we had a crystal ball. Ha Ha!
Speaking of technology…we pulled out Rudy’s old iPad a couple of weeks ago to do some streaming on an old TV and were delighted to discover a video he recorded on our road trip along Route 66 the day before he passed away…Technology is amazing!
Instant messaging is no longer instant for me. Texts seem to have a two to three day turnaround these days…if any at all. Keep your messages coming though because I do enjoy hearing from you and my band of friends do a pretty good job of helping me respond. I do, however, have a couple of friends who like to go rogue and insert their own responses to things. So if you get a text from me that is inappropriate or doesn’t sound like me, it isn’t. It’s likely from Greg Lawler…
We laid our boy to rest two years ago today. My heart aches with a longing (it is really hard to dictate while crying) to cuddle my boy which is kind of strange because he never was one for cuddling…he was always too busy unless, of course, it was to cuddle with his big sister to warm up after a bath. Nonetheless, there is a lot of longing going on today.
I’ve definitely noticed a progression of symptoms the last couple of weeks. My ability to talk has taken a significant hit due partly to an increasing shortness of breath. I can feel it in my chest but I can also feel it in my diaphragm as the muscle twitches are beginning to travel down my abdomen to my diaphragm. I have been feeling these twitches for the past three years… they started in my left leg and slowly made their way to my right leg and eventually my arms as this disease progressed throughout my body. They aren’t painful but they are constant and can, at times, be either annoying or distressing. I’m finding them particularly distracting now that they are in my abdomen because they feel exactly like when I was pregnant and felt my babies kick for the first time. I remember describing the sensation like little butterflies and those butterflies are back. What was once an anticipated and joyful sign of new life is now a sign of my body shutting down. This is another scary development and I really wish my body would find a plateau and sit tight for awhile.
I’m really not sure what else to say. As always, prayers are greatly appreciated. The Bible tells us over and over not to lose heart and I’m having a hard time heeding that command. I’m stuck between wanting to do this whole journey gracefully but also wanting to kick, claw and scream my way through it… my reality will likely fall somewhere in between. Thank you, dear ones, for holding us all up in prayer the deeper we get mired in this shitshow. (GREG!)
Of all my creative skills (music making, silversmithing, crafting) I dreaded losing typing the most because my computer work is a great time filler, processing in words is therapeutic for me and also keeps me connected with people. I’m not sure what this means for the blog. Maybe I’ll continue my posts by dictating to a friend, like I am now, or maybe Rolf and the kids will choose to carry on but one way or another I hope the updates will continue for the purpose of prayer.
So how am I filling my time? You might be disappointed to know that I spend the majority of my time binge-watching Dateline or 48 Hours. Not a particularly holy practice but I find solace in being able to say I don’t envy any of their stories. To be honest, life is becoming less about adjusting to a new normal and more about escaping my reality. When I’m not at church or at Kyle’s Kitchen listening to the boys playing music or at a doctor’s appointment, I am home engaged in my binge-watching or sleeping as sleep is really the ONLY time I’m able to truly escape. It isn’t quite as pitiful as it sounds…I do have the joy of family around and my friends but the days are long and it is getting harder to fill them with meaningful moments as I lose all ability to engage in life.
I’m not only feeling trapped physically but emotionally too. Many times during the day I want to meltdown with a big cry but I don’t feel that freedom because I can’t blow my nose or wipe my eyes. I just end up getting all congested and can’t breathe. You can’t imagine how frustrating it is to not be able to blow your nose or wipe your eyes. 🙂 Of course, this is a terrible week to not feel the freedom to completely unload emotionally as we prepare to face the two-year anniversary of Rudy’s passing on Thursday. 😦 If ever it felt like the walls were closing in on all sides, it is now.
I’m not sure there is any new lesson to be learned in this season. In moments of prayer and meditation I feel like God is telling me to relax and ride the wave…to lean into my lifetime of faith and coast a little bit. Winston Churchill’s famous quote (“Sure I am of this, that you have only to endure to conquer”) keeps coming to mind. More and more this journey is about enduring not only for me but also for those who are walking with me. I actually don’t think escaping is a bad idea as long as I don’t ignore the moments in my day that are life-giving…
We don’t have a specific plan for Thursday. Unlike last year, we are going to just let the day take us where it will. I sure would appreciate your prayers for this whole week to be exactly what we all need, individually and as a family. None of this is what I envisioned for our family and yet, all of this continues to shape our family in ways that are truly giving me life now. How utterly confounding that is to me and also deeply, deeply comforting.
Okay, I need to get back to my Dateline episode but I will leave you with this tribute to Rudy. ‘Probably my all-time favorite song the boys do:
The Kansas Wilsons including my mom and brother’s family arrived in Goleta last week just in time to celebrate America’s Birthday California-style. Their 3 1/2 day visit included lots of beach time, pool time and yummy Mexican food. I enjoyed getting to know my two new nephews-in-law a bit and watching my kids soak up quality cousin fun. They may be all grown up but they still play hard. 🙂 Time with loved ones is never long enough but we made the most of it, for sure.
Thank you for your prayers. My g-tube placement last Thursday went smoothly…Rolf and I arrived at the hospital at 10am and were out by 2pm. Unfortunately, my recovery at home was stressful due to a combination of me feeling particularly vulnerable & paranoid, the unexpected (last minute) demand on the whole family to care for me and emotional exhaustion in general. I can’t say I’m experiencing PTSD, per se, but I’m definitely feeling a certain level of post-traumatic stress in this most recent lifestyle change because we are not just adding to my daily care regimen but reinstating a well-worn routine that comes with a flood of memories of our boy. I’ve just been so sad and weepy and impatient and _________ (you name it, I’m probably feeling it). I’m praying all this emotion is just part of the adjustment process and won’t linger too long because it’s heavy and exhausting.
In addition, I’m praying the supplemental nutrition I’m able to get through the g-tube will make me feel healthier and stronger physically. I can still eat by mouth but I’m limited to soft foods (‘been eating lots of pasta and mashed potatoes lately!) and I usually stop eating not because I’m full but because I’m tired. I certainly haven’t had a full or balanced diet lately so there is lots of room for improvement! Hopefully we’ll see a notable difference.
As the struggle intensifies, you need to know that the encouragement that comes our way through your messages & gifts and special memory-making moments becomes sweeter, for sure. Thank you all for the encouragement and your ongoing prayer. It indeed uplifts and sustains! 🙂
I rolled out of a meeting at the Rescue Mission at 5pm this afternoon to the news that my g-tube (feeding tube) placement surgery is happening tomorrow (Thursday) at 11am! Surprise! Although Rolf and I talked with the neurologist recently about it being time to schedule a GI consult to discuss the plan for a g-tube, I guess our call to 911 last Friday was reason enough for Dr. D to expedite the process…catching us off guard a bit. This is a routine, out-patient procedure usually done in the GI office. The only reason they scheduled mine at the hospital is because I have ALS…I should be home by mid-afternoon. I’m not nervous about the procedure (‘been through this before with Rudy) but I would appreciate your prayers for the recovery. It’s hard enough for me to find comfortable positions in bed or my chair on a normal day, I can’t imagine adding wound care and pain management to the equation.
I don’t want to overdramatize the situation but I sure hope this move improves my quality of life and doesn’t diminish it. I’m going into this not knowing how I feel about it and I’m weepy. I feel like we just unloaded all of Rudy’s enteral supplies and the thought of resuming regular supply shipments from crApria discourages me more than the fact that I need a feeding tube. I know too much and have too much history in this arena to see this as anything but a major setback…I hope I’m proven wrong but tonight I’m uncharacteristically pessimistic and wonder if all the effort will even be worth it…but then again I want to see my baby girl graduate from high school so…! Prayer PLEASE!!
I’ll be off the grid for a few days and I’m already behind in responding to texts and emails this week so if you don’t hear from me (especially regarding requests to visit), please be persistent and try again. 🙂 Thank you dear ones.
God is very good to me. Life may be kicking my butt but God is good and I have a remarkable story that illustrates this beautifully:
A good friend of mine from our former church in L.A. invited me to a prayer and worship service last Thursday night. To be honest, I didn’t want to go. As much as I love this dear community of friends, I just wasn’t sure I had the emotional energy to see them…many of whom I haven’t seen since my decline. So, I sat on the invitation for a few days and in that time published my last post. As I composed & edited the post and put the struggle into words, I decided I really should take advantage of Pammy’s invitation regardless of my reservations because I knew the experience would help calibrate my perspective and bring healing. In addition, the kids were willing to drive me down which sweetened the pot even more! 😉
Olivia was 4, Max 8 and Wilson 10 when we moved from L.A. to Santa Barbara so it was a little freaky for the boys to be back at Christian Assembly – they remembered everything being much bigger back in the day. Ha! Although we’ve been gone for twelve years, it only took one step past the threshold of the church before I began to run into friends…by the time we got settled in the sanctuary, our posse numbered 12+. The 7 years we attended CA were formative for our young family. I was part of a small mom’s prayer group that was very special and I became deeply invested in the spiritual nurturing of all our little ones. Now these kids are grown and many of them were present Thursday night praying fervently for ME…how precious is THAT!
The highlight of the evening for me came after an organized time of prayer for spiritual, emotional and physical healing…a large group gathered around me including Wilson, Max and Olivia. As I looked down at my kids praying, I was overcome with a strong sense that they should be prayed over but I was sobbing and couldn’t do it so I motioned to my friends Pam, Robin and Kathy to pray for them. I just sat there and sobbed and, quite unexpectedly, felt led to pray prayers of anointing over the kids myself even though I couldn’t articulate the words. I motioned to Kathy to help me place my hand on Olivia’s head and then the boys’ and through my tears I prayed the prayers of my heart that came out as unintelligible sounds and groans. I wish my description could do the experience justice…it was such a precious, “full circle” picture of community, friendship and love. God met me in that moment and reassured me that He has my children in the palm of His hands. Something my heart needed to be reassured of, I guess.
My prayers? Well, for Olivia, I prayed that her heart will be protected. She has been and will continue to be on the front lines of my struggle and I pray her faith fuels her strength. For Max, I prayed he will be sensitive to and empowered by God’s spirit as he grows in his gift to lead others (in worship especially) but also in life in general. And for Wilson, I prayed he will be a bold beacon of God’s grace and truth and JOY in the many contexts he will find himself in this transitional season from youth group leader to military officer. For all three, I prayed that the tough stuff will not leave emotional scars but will deepen and inform their compassion.
As for me, God used the evening to remind me to trust my instincts. I am in a frightening and frustrating process as expressed in my last post. It is easy to feel lost in the increasingly unfamiliar space I find myself in and (although I appreciate the professional resources available to me) my best defense against losing myself in the chaos is listening to and trusting my gut…an important insight for both me and Rolf because we are DIYers at heart, always have been, from Rolf’s building projects to the way I managed our home to the way we problem-solved Rudy’s care and now mine. It was as if God was saying to me on Thursday “Don’t worry. You’ve got this. I’m guiding and you’re listening and you have a team of wonderful people following your lead. Trust yourself. All shall be well.”
So, whenever I think I’m hearing from God I look for confirmation and then this happened the following morning:
The kids and I rolled in at 1am on our return from L.A. As a result, I was out of sync in my normal routine and extra tired the following morning…about 3 bites into my breakfast I began to choke. The boys jumped into gear and began our family’s choking protocol but this time it didn’t work and the blockage was not budging. Trying not to panic, I motioned to Max to pound on my back harder. The food shifted and my airway opened up but it was still lodged in my throat. It was really painful and I was unable to swallow my saliva. After a few attempts at trying other techniques with no luck, I told Wilson to call 911 figuring they’d have some quick and easy remedy. Three first responders arrived, assessed the situation and advised I be transported to the ER. I really didn’t want to go nor did I feel like the situation warranted an ambulance transport…if only we could get a good whack at just the right angle…I asked one of the first responders to try…he did so, lightly, but expressed concern over hurting me or making it worse. Understandable, but while Wilson answered the others’ questions regarding my general information, I turned to Max and asked him to give it another try…2 or 3 strong strikes later and I was free!! I leaned back with a deep breath and big smile just as the ambulance and EMTs arrived. Woo Hoo!!!! They checked my vital signs and left pretty quick after that.
Like I said to the boys afterwards, it was good that we called for help and had back up but ultimately we followed instinct, figured it out and got ‘er done! Yay us! Where was Olivia? Out on a long run. There will be future episodes for which she will be needed but this time God gave her a break and guarded her heart. Praise Him!
So, has all this translated into less frustration in the living out of the day to day? No. But, it is helping me connect the dots and not feel so lost…as have all your thoughtful comments and messages this past week. Thank you, friends! I welcome your insights and words of love always.
I apologize! This is an awful word and I don’t use it flippantly but ALS is an awful disease and sometimes it’s the only expression that satisfies. Ironically, it’s the only word I can still enunciate perfectly so there is twisted personal value for me in using it as well. 😉
Friends, I am in the midst of the toughest adjustment to date in the progression of this disease and it’s a hard hurdle to clear…I’ve lost practical use of my arms. I feel like I’m wearing cement sleeves and I can’t lift them anymore, my fingers are beginning to curl and I am no longer able to grip. As a result, my level of independence has plummeted and my level of frustration is skyrocketing.
I’ll spare you my long list of “things that frustrate” but the discouraging reality of losing my arm use is the seemingly endless domino effect of other issues that now need to be addressed…i.e. the threat of pressure sores and other skin issues because I can no longer adjust my position on my own or dehydration because I can’t lift a cup to drink so I’m not drinking as much throughout the day which leads to constipation, etc., etc., blah, blah, blah. I saw my neurologist Monday and we added 4 new medications to my daily regimen to combat all the emerging issues (note – I can barely swallow the 2 meds I’m currently taking). I’ve definitely been in a consistent progression for the past year and a half but there is a convergence of critical symptoms happening right now that is all consuming…and chipping away at my quality of life. It’s time to make a trip to the GI to discuss a feeding tube; I have a breathing machine I’m supposed to wear 8 hours a day and can only tolerate 2 1/2; and pretty much everything requires more energy than I have. To top it all off, I can no longer eat my favorite comfort foods and retail therapy has lost its allure. (Insert blog title here!!!!) There just isn’t a whole lot in a typical day for me that is light hearted and easy.
I don’t share all this to be pitied but to show the crazy extremes because in God’s precious mercy, there has also been a convergence of encouragement from many sources lately that I’m holding onto tightly as lifelines…
For example, a friend from Boston sent me this song that speaks to my heartache: Click here
My 90+ year old friend emailed me a copy of a devotional she’s reading and this excerpt resonated with the singer in me:
“YourFather is training you for a part the angels cannot sing, and His conservatory is the school of sorrows. Others have said that He sends sorrow to test you, yet this is not the case. He sends* sorrow to educate you, thereby providing you with the proper training for His heavenly choir. (*Personal note: I take issue with “sends”. I prefer “uses”.)
In the darkest night He is composing your song. In the valley He is tuning your voice. In the storm clouds He is deepening your range. In the rain showers He is sweetening your melody. In the cold He is giving your notes expression. And as you pass at times from hope to fear. He is perfecting the message of your lyrics.
Oh dear soul, do not despise your school of sorrow. It is bestowing on you a unique part in the heavenly song. ” -George Matheson
Rolf forwarded me Richard Rohr’s daily meditation about my favorite – Julian of Norwich! Yay:
…and so much more. Thank you all. God is using you.
Please pray for a quick adjustment to new systems of living, for emotional strength and physical contentedness in my long, motionless days and fitful nights. ‘Grateful for you!!!
Rudy’s courtyard is coming along. Rolf and the kids spent most of Saturday replanting and refurbishing the planter…it turned out great. All we need is a hummingbird feeder in the tree to finish is off, I think. A big thank you to those of you who have sent in a gift!! What a sweet encouragement to our whole family. ‘Grateful for you!!!
I’ve had the details of my funeral mapped out for awhile but I met with my pastor and Rolf and Wilson last week to discuss it all while I can still talk. It hasn’t been an easy task…knowing how much to do by myself (which isn’t fun) and when to consult my family (who would rather not discuss it). Pastor James described it well…my death is something the family doesn’t want to think about and something I think about all the time. So true. I dreaded calling this meeting together but I also knew it would give me peace of mind to leave a plan in place and hopefully make it easier on everyone when the time comes. One could argue that this is something we should all be doing anyway and it is but, let me tell you, it would be a whole lot easier to stomach if the felt need wasn’t so imminent.
As you can imagine, there were tears at this meeting but, as is the Geyling gift, there were also a number of straight up jokes at my expense that made me laugh big belly laughs too. 🙂 I’m a woman of tradition & order and my choices reflect that but I also value community and creativity so that is evident too. And, of course, no Trish-organized-event would be complete without a party favor (already ordered and received!). Hopefully the details won’t reveal themselves for a very long time but when the time does come, I want my family and friends to carve out a space to grieve and embrace whatever unfolds while making room for big belly laughs too.
FYI, speaking of death and the need for funeral plans, today is the 25th and I miss my boy.