Hi friends. Rolf here. I’m breaking my silence on the blog to report that we initiated home hospice care for Trish this week. As she chronicled here, life was getting progressively more difficult as her body shut down. For several weeks now, she has been largely confined to bed and it was getting increasingly more difficult to breathe while sitting up even briefly. Early this week it became challenging to breathe even while reclining. While the CPAP was initially intended for respite, she now needs it constantly.
As much as we knew this was coming, it’s certainly an adjustment. Trish has long held that she wants to stay home and we want that for her as well. Hospice allows us to do that. It’s been scary. Hard to imagine how cruel it has to be for someone so super-competent to be completely dependent on others and so unable to communicate with them.
In the larger sense, hospice is simply a change in the entity that’s managing Trish’s care–which has always been dictated by her physical condition. ALS really isn’t one of those diseases that you can fight. You just have to deal with it. And this is where it’s brought us. As foreboding as the term is, hospice is just the introduction of new team members who specialize in this stage. While this week involves newness, the hospice team values continuity. The cadre of caring friends that is caring for Trish will continue to be present but there will be more guidance for a process none of us are readily familiar with. The immediate encouragement is a focus on keeping Trish comfortable and we are learning to make good use of the bag of pharmaceutical candy they’ve introduced to that end.
Can’t really promise when the next update will come but as we appreciate all those following the journey, I wanted to make sure you were aware of this new development. So grateful for your love and prayer for Trish and our family.
I’m not sure a passage of scripture has ever spoken more directly to my heart than the following Psalm from the new Passion Translation (TPT) of the Bible. If you have a minute, I want you to find a quiet space and read these verses out loud to yourself. Even though these words, I’m sure, were written solely for me today, I’m happy to share the blessing with you. 😉
42 1 I long to drink of you, O God, drinking deeply from the streams of pleasure flowing from your presence. My longings overwhelm me for more of you! 2 My soul thirsts, pants, and longs for the living God. I want to come and see the face of God. 3 Day and night my tears keep falling and my heart keeps crying for your help while my enemies mock me over and over, saying, “Where is this God of yours? Why doesn’t he help you?” 4 So I speak over my heartbroken soul, “Take courage. Remember when you used to be right out front leading the procession of praise when the great crowd of worshipers gathered to go into the presence of the Lord? You shouted with joy as the sound of passionate celebration filled the air and the joyous multitude of lovers honored the festival of the Lord!” 5 So then, my soul, why would you be depressed? Why would you sink into despair? Just keep hoping and waiting on God, your Savior. For no matter what, I will still sing with praise, for living before his face is my saving grace! 6 Here I am depressed and downcast. Yet I will still remember you as I ponder the place where your glory streams down from the mighty mountaintops, lofty and majestic—the mountains of your awesome presence. 7 My deep need calls out to the deep kindness of your love. Your waterfall of weeping sent waves of sorrow over my soul, carrying me away, cascading over me like a thundering cataract. 8 Yet all day long God’s promises of love pour over me. Through the night I sing his songs, for my prayer to God has become my life. 9 I will say to God, “You are my mountain of strength; how could you forget me? Why must I suffer this vile oppression of my enemies— these heartless tormentors who are out to kill me?” 10 Their wounding words pierce my heart over and over while they say, “Where is this God of yours?” 11 So I say to my soul, “Don’t be discouraged. Don’t be disturbed. For I know my God will break through for me.” Then I’ll have plenty of reasons to praise him all over again. Yes, living before his face is my saving grace!
Today would have been your 11th birthday. I lay here nearly motionless, unable to celebrate you today the way I would like, which seems to add to my heartbreak. I wish I could spend the day doing your favorite activities, spending time with your favorite people, and eating your favorite foods. Instead, I’m forced to navigate today…still…quiet…with only my memories of you…how valuable those memories are to me now.
Know you are in every nook and cranny of our family’s existence. The reminders of you that surround us are both subtle and not-so-subtle…
I’m thinking of you, missing you, and sending my love always, big boy.
September 18th marks the two-year anniversary of my diagnosis. It also marks my official entry into the average lifespan of someone with ALS. This is especially sobering considering I felt the onset of my symptoms a year and a half before my diagnosis…’not sure how all that factors in, but I guess it doesn’t really matter anyhow because I don’t need a calendar to tell me my disease is progressing.
If I had to choose one word to describe the past 2+ years it would be relentless. Rudy’s death came like a giant rogue wave knocking me off my feet and then, BAM!, another one came with my diagnosis pulling me under into a rip current that has steadily taken me farther out to sea. Although we, as a family, have made the most of our circumstances at times in the past two years, the experience itself for me has been relentless…harsh, oppressive, constant, inflexible, suffocating. I guess this is where the hope of Heaven becomes particularly comforting but I really wish there was room in this disease for a break in the here and now.
We reorganized my care. My amazing team of caregiver friends doubled up from a two-week rotation down to one with two, sometimes three, shifts daily! I am surrounded and I am blessed. I have also never been more emotionally alone. It comes with a terminal illness, I think, because I can’t fully identify with my loved ones’ pain nor they mine. I know God can identify with my suffering but I wonder sometimes if He can truly identify with all of the crazy, irreverent, gut-wrenching and immobilizing emotions swirling in and through me all the time. I know that nothing can change the fact that God is near but that doesn’t make this journey any less lonely….that part is inherent and I’m learning not to be threatened by it.
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!)