This week's newsletter item is written by Holly Feliciano. The Feliciano family has been through tremendous trials and tribulations for the past couple of years due to Allan's brain cancer. Holly's blog last week on CaringBridge was so moving and inspiring, I thought everyone would like to read it. Thanks, Holly. -- Claire Curcio, Senior Warden
Hello Fellow Trinitarians!
How's everyone doing with 2020? Filling up any Bingo cards?
No matter where you stand politically, we all have to admit our lives have changed pretty dramatically thanks to Covid-19 and other fun times 2020 has brought us. Whether it be you teleworking or your kids being hybrid/virtual, we have all had to adjust to some changes. And change is pretty hard, isn't it?
We've had our adjustments, to be sure, but the bulk of our changes (of course) were mostly over last year. (For those of you that don’t know us personally, Allan, my husband, has brain cancer. Last year was a full of year of treatment, including radiation and chemotherapy. His tumor is currently stable with MRI scans every 3 to 4 months. He does have seizures occasionally, not uncommon with this condition.) This pandemic in a lot of ways is easier for us to cope with because we feel like all of us are in it together, while cancer can be so isolating. However, there are still times where we are trying to get to that new normal this year too.
Case in point, Allan hasn't traveled in almost 2 years. His last business trip was right before that initial grand mal seizure. Crazy right? To be fair, this year nobody is traveling much. He has been home 24/7 working (thankful!) and has only gone into the office twice (again, thankful!). He had a trip scheduled in June that was postponed and it was postponed again. 3rd time is the charm and he actually left for travel to Kings Bay, Georgia.
To say it is weird to have him gone is an understatement.
Lots of feelings about this on Allan's and my part. Happiness and anxiety all mixed into one. This is the first time Allan has "been on his own" in almost 2 years. He still can't drive because of the seizures, so he arranged with a coworker to be picked up. It is a "normal" thing for Allan to travel for work, so that part feels great for both of us. Traveling in Covid, eh, that's not so normal, but yet learning a new normal. The point is traveling is normal, and it's a piece he is getting back. The one part that worried me was him having a seizure and me not being around to help. Legit concern.
Allan's seizure specialist adjusted his VNS device 3 and a half weeks ago to give him more "coverage." Meaning the device goes off a bit more frequently to keep things calmer in the brain. I have noticed the difference in Allan and so has he. It's been 4 weeks since a seizure and that is a nice long stretch! However, when you have that long of a stretch you wonder how much longer will it go. And with being on travel in a different place? A bit more nerve-racking.
We talked about scenarios and what he would do in different places. But again, travel is a part of his life and he needs to do it and adjust! And if a seizure happens, well, it happens. Stinks, but that new normal…
Well, he ended up having a seizure the first night away while out dining alone. Yes, total bummer. But stick with me here because there are a couple of positive lessons to be taught here.
Allan was at Cracker Barrel when it came on. Of course, his waitress witnessed it. And yes, that sounds really awful. But here is where you roll with the changes. She saw it and after it happened went and told her manager. (Nobody else around saw it, it was focal, meaning just face and arm. Not noticeable unless you are watching him.) Manager did a casual walk by to make sure everything was ok. When the waitress brought his food, Allan tried to explain why he needed some help opening the syrup bottle and a couple other things (he has temporary weakness for a bit after a seizure).
Here's the cool part. She told him not to worry about it, that her dad has seizures, so she completely understood and said she would help him with whatever he needed. How's that for awesomeness? Talk about the perfect stranger to help, right? (Ahem, some would say some divine intervention, perhaps?) He tipped her well and as he was leaving, thanked her for her kindness. She responded with how our world needs more kindness and no need to thank her, that it was her pleasure to help.
Our world needs more kindness. There's the first lesson. Be kind, be helpful.
While we are sad Allan had a seizure, there is a sense of relief. His clock is "reset" basically and I feel like he will be fine for the remainder of his travel. He won't have to worry about it happening in a meeting or whatever. A strange way of thinking, I know, but it is our normal. And isn't that what we all need to do? Figure out how to live life in a new normal? There's no sense in mourning the past (although that is ok to do, don't get me wrong, just don't stay stuck there) when we have to figure out how to live life today. Easier said than done, trust me, but it is something I'm learning.
There's the other lesson. Figuring out the new normal. Living your life every day and making the adjustments you need to do to LIVE. Try not to stress, try not to worry. Mantra.
Life is carrying on here for us and we aren't taking things for granted. Kids are 100% virtual and seem to be adjusting well. I'm doing all my usual stuff. All is well.
Now if only FSU football can get their act together, life would be grand, but that's a whole other writing piece.
Blessings, Tribe. (For you newbies, that’s what I like to call my readers.)