The pace of this last week has been much slower. The weeks between the end of September and the start of November were particularly full so a little respite before the holidays begin is a good thing. I started another round of Radicava infusions this week which gives me another reason to lounge in bed and watch Hallmark Christmas movies (yes, I’m one of those people!). Actually, it’s getting to the point where I don’t need an excuse to be in bed…it’s where I’m most comfortable and where I spend most of my day…out of necessity. I’m still doing my own self-care (i.e. showering and getting dressed) but it’s slow going and pretty much wipes me out. A couple of trips to the bathroom and back are about all I can handle by myself during the day. My lack of energy is no longer just a nuisance but a real hurdle in me doing the basics.
The gradual (BUT NOT GRADUAL ENOUGH!) nature of this disease is a perplexing process. You’d think knowing what your needs are at any given point would be obvious but it isn’t…it’s kind of like standing near the edge of a fog bank…you see it coming but you don’t really notice you’re in the thick of it until you can’t see a few feet in front of you anymore and all of a sudden there is a frantic need to do something about it. There are some things you can do to be “pro active” in this process but when it comes to certain specifics, you don’t know until you know and that is a little distressing. I am definitely on the verge of transitioning to yet another level of support. Each transition pushes me farther away from what is familiar and into new territory…territory that is unknown, frightening, exhausting, humiliating, territory that requires truckloads of patience & grace as well as a constant adjustment of expectations on every level imaginable. My body feels like it started out in a pool of water, transitioned to a vat of wet cement and now that cement is beginning to harden. It’s happening, I can feel it and there is nothing I can do to stop it. A tough reality to face day in and day out no matter how full or empty the calendar may be.
On the bright side, I am using the extra time I have this week to do some holiday prep. Bound and determined to hand address all 400 of our Christmas cards this year, I got an early start and am chipping away at the list a little bit at a time (address a few, take a nap, address a few more, take a nap, etc, etc). 🙂
Two of my sweet friends came over yesterday and helped me get a jump start on a couple of projects and some wrapping while we listened to Christmas music…now, THAT kind of help I can embrace enthusiastically. Ha Ha Oh friends, who am I kidding, I’d be doing all this Christmas prep already with or without ALS!!! I’ve said from the very beginning of this journey that I wanted to stay true to myself so, I guess, my hyper organized approach to Christmas is a good example of that. (Yay for the fun of Holiday Prep!!)
Thanks to the 2017 Disney/Pixar film Coco, the Mexican “Day of the Dead” holiday is more widely known and part of popular culture than ever before. I didn’t know anything about it until I moved to a predominantly hispanic community 28 years ago. It is observed from October 31-November 2 so when I was first introduced to it, I thought it was Mexico’s version of Halloween and because I wasn’t a big fan of the skull and La Calavera Catrina symbols associated with the holiday, I didn’t really pay a whole lot of attention to it in general. I didn’t understand it’s deep historical roots or it’s profound meaning at that time which is why I’m super glad I took the time to learn more about it over the years.
As I understand it, the holiday at it’s core is time set aside for family and friends to gather and honor loved ones who have passed away. Dia de los Muertos (or Dia de Muertos) traditions include building altars to honor the deceased, preparing the loved ones’ favorite foods and visiting their graves with their favorite possessions and gifts. Long ago, the holiday was observed for a whole month but the modern tradition lasts three days with November 1st being reserved specifically for dead children and infants…known as Dia de los Inocentes or Dia de los Angelitos…and November 2nd for deceased adults…and as Coco so beautifully illustrated, it can be done with such color and creativity and enthusiasm!
I have an even GREATER appreciation for the love expressed through the observance of this holiday as I’ve received word that Rudy is being included in some very special tributes this year…
As I was looking closely at Nurse Gina’s altar picture, it dawned on me that we have our own version of an altar!!! We have a space on our living room cabinet where a collection of pics have gathered over the years as our loved ones have passed away…
Well, given that today is November 1st (Dia de los Inocentes) and we’ve already taken “gifts at the gravesite”, I guess the only thing left to do is to whip up some pizza, tomato basil soup and ranch dressing. Love you Rudy! You are remembered and celebrated by many today and we are grateful for the village of friends that still thinks of and loves you too. Big hugs!!!
(P.S. I think it’s interesting to note that Rudy’s original due date was November 1st. He ended up coming a month early…how strange it would be now if his birthday had been November 1st)