Well, it’s a HOT Monday in Goleta and we’re back to a normal weekly schedule after our trip to NYC and the 4th of July holiday week. A big thanks to everyone who reached out to us on Friday and Saturday during the fire that broke out in our town. I was actually down south when the Holiday Fire started on Friday night but Rolf and Olivia kept me updated via texts and phone calls. The mandatory evacuation zone extended to a 1/2 mile from our home so R & O did end up packing a few suitcases full of pictures and important papers but never actually left the area. It was a relatively small fire that was well contained within a day but, sadly, 20 structures (most of them homes) were lost. It has been a tough year for our community.
To be honest, I’m starting the week off pretty overwhelmed. I blame the heat because my perspective is definitely warped in extreme heat but I was kind of anticipating this would be a hard week even before the heatwave hit. We’re back to the daily grind and that’s a BIG let down after our special family time away in NY and my weekend in San Diego with dear friends…both boys are gone now until the first week of August…and the looooooong, heartbreaking month of July is ahead of us. I have a desk FULL of things I simply must sort through, bills to pay, medical stuff to follow up on and I can’t seem to muster up an ounce of motivation…my body is moving as slow as molasses. At the end of our NY trip I wanted to get back to my bed and the comforts of my space at home while at the same time not wanting all the fun distraction of being away to end. I still feel that way and just want to throw a toddler tantrum today because I want what I want…and what I want is, well, the impossible.
So, what’s next? I think Rolf and I are gearing up and bracing ourselves for all the unknowns that are headed our way as we prepare for the year anniversary of Rudy’s death. It’s hard to know what to expect…it’s hard to know how the next few weeks will unfold emotionally and how that will impact our day to day. The awareness of our grief is certainly heightened and the unpredictability of grief continues which is maddening. I must say, though, the plan to have you all send us LM cars to honor Rudy at his gravesite on the 25th was GENIUS because we have a nice collection so far and every delivery brings us great joy and delight!!! 🙂
On the ALS front, I’m continuing my infusions of Radicava every two weeks (2 weeks on, 2 weeks off). My home health nurse who comes to access my port tells me that her other clients are eager to start the next round after their 2-week break because they notice a difference when they are on the Radicava. I can’t say I’m noticing much of a difference but maybe I’m not as “in tune” with my body. So, I’m still acting in faith that it’s working to my advantage. Because of a delay in scheduling, I don’t see the neurologist until the end of this month. I haven’t seen her since March so it will be interesting to hear how she thinks I’m doing.
I received a BIG box in the mail a couple of weeks ago. It contained an insurance-approved speech generating device that my speech pathologist has been working to get me for a few months now. In fact, when we got news the device was being shipped to me, he sent me an email that read “Congratulations on your new Tobii-Dynavox device…”. It took me back a bit. I realized that, yes, this is something to celebrate. It’s a big deal that I have it and a real gift for sure. I am grateful. It’s just that it’s the start of another chapter in this ALS journey. It’s a device that will speak for me when I can no longer speak for myself…it’s a device that will keep me connected to the outside world when I can no longer engage the outside world for myself…it’s a device with a learning curve and I need to start learning how to use it now. That’s heavy and heartbreaking.
Just to give you a little sneak peek into my process…within weeks of my diagnosis, Rolf and I began researching the many options out there for voice banking…a process where you record hundreds of sounds, words and phrases to be used later with the speech generating device to make a computer generated voice that sounds like you. I actually ended up deciding not to voice bank. My voice was already beginning to sound slurred and I just didn’t feel like it was worth the effort. If I made the wrong decision for my family, I apologize, but I feel okay with my choice. I just didn’t want to hear a slurred version of myself chirping back at me every time I wanted to say something…adding insult to injury. I mean, if I have a choice, I’d much rather program a cool Australian accent or sophisticated British accent to switch things up a bit. 🙂 I share this cautiously as I know for many voice banking is a real life line and I’m not typically that vain but it’s how I felt at the time and I’m trusting my instincts. I get a few hours of training with a company rep that I’m trying to set up now so once I get some time with the technology, I’m sure I’ll grow in my motivation to interact with it…I’ve said it before but the journey of ALS requires a daily assessment of where I’m at and what needs to be adapted to make life doable. Where the focus up until now has mostly been mobility, communication now shares the radar and life charges on. I’ll keep you posted and let you know what voice I land on. 🙂