May is ALS Awareness month… and we don’t usually want to talk about it!
But, while our reality seems atypical in our small community (making it challenging to normalize), there are over 200,000 people around the world affected by this horrendous disease… and think of all of their family and friends also impacted! Not only that, but Prevalence is predicted to increase by 69% by 2040, the cause remains unknown, and the cure is yet to be discovered.
Phew. That right there is why we don’t usually like to talk about it- sometimes it feels too high to climb.
Instead, with the perspective we’ve gained from inside the eye of the storm we want to use our breath and energy to lead others to what’s important in life. We want to share what’s fueling our desire for life. We want to be a part of seeing God move!
We want to share “a day in our life” not for pity’s sake, but as a reminder for us and others that while our days are mundane in a repetitive way we can still pursue God and love others, even if it looks different.
DISCLAIMER:
You’ll see a very chill day, which is not always representative of life! Our days could be filled with the most amazing surprises and blessings dropped at our front door or come in the form of helping hands, or it could include very hard moments from new symptoms, difficult showers, choking, or extreme grief. You’ll have to creatively infuse both to do our days justice. And, add lots of Talia! (Having a school-aged child is sad because we just don’t see as much of her during the day, but boy does she add so much life and spunk!
Justin’s thoughts are in Blue. Lori’s thoughts are in Red.
One of the harder aspects of living with ALS is that it is difficult to make each day special because of limited movement and energy. The good news is it's possible as long as you are willing to try and get more and more creative. With that said it's incredibly important for me to have my basic routines completed everyday for me to maximize my chances of finding joy in life. Here's an example of what my basic daily routine looks like. It varies from day to day but generally has these components:
4 AM
JUSTIN:My day always begins by waking up alone in my recliner before it's time to get up, usually between 4 and 5. I have a clock that projects the time on the ceiling so I can easily see it. I have developed a game of seeing how many different words the time spells if you flip the numbers upside down and reverse them. For example the time 11:35 spells the word sell. There's a lot more than you think! Waking up in the middle of the night is a major mental battle for me that if I lose then it means waking Lori up and the last thing I want to do is make her sacrifice more than she already has for me. If I lose my mind and allow destructive and unhelpful thoughts to gain a foothold then I can really struggle to rest enough to fall back asleep.
LORI: While I’m a heavy sleeper, the last few weeks around 4 I’ll mumble “do you need water or the cough assist?” It’s that dreamy state where I wake up because I realize I’m talking out loud. I get out of bed a tad grumpy, but soften as I come to and help Justin to stand, pee, use the cough assist, get a sip of water, and adjust his legs and chair and crawl back into bed. Usually, I feel some level of guilt that I’m crawling into a bed, and loneliness that I’m crawling in alone.
7 AM
7:55 AM
8:15 AM
9 AM
12PM
2 PM
3PM
6PM
BEDTIME
Well, that was just one of our days this week! Maybe we'll share another day again sometime.
Photos taken by the amazing Lindsay Rossman. Thank you for documenting our day!
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