Pandemic Chronicles Continue
How is everyone doing? Here is my update:
We All Need to Step Up
Before March 13th the day everything officially shut down here in Los Angeles, I often thought, “I am managing a lot, and I don’t always have the energy to contribute to change on any other deeper level besides helping my family and doing what I can for people with Crohn’s and Colitis.” But now in 2020 — this fantastic year — there is too much going on and besides the need for help from all to continue to combat injustice, it is getting harder and harder for me to just ignore Mr. President’s daily shit show. I didn’t go to any protests, but I am certain we all need to show up and participate right now so I am doing what I can to help. Last week President Obama (miss him sooo much!) eulogized John Lewis and if you need to further be inspired and didn’t watch it, please do so.
Things seem to have gone from bad to worse with some nuggets of hope and truth emerging from our collective experience. The community organizing and support that has arisen over the past several weeks is hopeful.
Graduation
My older son graduated from Northwestern University in June. Except we are in a pandemic and everything is canceled. Graduation was online.
It wasn’t the same for him for obvious reasons but besides not having an in-person ceremony (they have said they will hold one June 2021) all of the graduates missed their last months of college life, no friends, parties, dances, or other end of year traditions. Obviously there have been much worse consequences from the pandemic, but comparative suffering as Brené Brown recently discussed on her podcast, has no function really. She also had David Kessler (who worked with Elizabeth Kubler-Ross on the stages of grief, and then later lost his young son tragically), on one of her podcasts and he said, “the worst loss is always your loss.”
Yes, sometimes we can have moments of relief when thinking of someone else’s hardship or find comfort in shared experiences of loss, but your loss is your loss and you have a right to grieve it.
Staying Home
The quarantine life rages on. Cleaning, cooking and laundry are the main events some days, and it is endless. Going to the market is stressful, with waiting in line, trying to focus on what to buy while almost impossibly standing six feet away from other shoppers and workers, and then getting home, and disinfecting the haul before storing it. Then what to cook? I have gone from “hey, let’s plan the meals weekly” to “I can’t think of anything else to make anymore.” Some things are in frequent rotation like peanut sauce bowls, gluten free mac and cheese that Lowell can’t eat because of his dairy allergy, various tofu dishes and grilling — chicken for the non-vegetarians, and veggie burgers for the vegetarians. Most days I feel like a short order cook accommodating all the dietary needs. There has been the requisite baking of banana bread and apparently peanut butter bread has become a thing, and I tried that. We got caught up in the whipped coffee craze but when I made it, I found it so strong that I could only have a few sips before I felt like cleaning every closet in my house while jumping up and down. Yeah, it was kind of like an iced Frappuccino on steroids.
I have been thinking about how pervasive the workout culture is in Los Angeles. I have lived here or over 25 years by way of Woodstock, New York and New York City. I know, I know, New York also has their fair share of workout enthusiasts and endless boutique fitness studios, though back in the 90s when I lived there, the options were mostly limited to our little Brooklyn gym or a local YMCA.
Living in LA, working out seems like they are not optional. The question often is, what workouts do YOU do? Do you go to SoulCycle or have a Peloton? Hot yoga or not? Mat Pilates or reformer? You get the idea. When this pandemic started, studios had to adjust and quickly shifted to online workouts. So now, in case you are wondering, there is no excuse not to work out!
Besides continuing with the workouts you were doing before, there are many free options online. Yes I have continued to workout, but the workout guilt during this time has seemed to increase. We all should have more time! You can stream classes! Get off your butt! There is no excuse! We still need to listen to our bodies however and rest if you need to. Or just take a walk to clear your head, get fresh air, and not focus on “the workout.” Yes, of course I agree moving your body is extremely beneficial to our moods and overall health, but try not to make it something you feel bad about.
Crohn’s Disease
Lowell still has Crohn’s disease and it’s still not in remission but he is stable. He still manages chronic pain and his ongoing need to gain weight. He is gaining weight! He is able to tolerate a mostly regular diet, and still supplements with formula through is G-tube. Being at home most of the time is the opposite of what his prescription is for relieving chronic pain, based on the two programs he was in over the past few years at Stanford and the Mayo Clinic. Distraction, physical activity, and socializing are all the things that were helping him manage before the stay at home orders started.
He has had to see doctors and have tests either in person or via video during this time. Of course doctors are taking precautions and the in-person appointments have felt safe. Most people have seemed to avoid non urgent medical care, and doctor’s offices did reschedule appointments. Many are opening up and just a quick public service announcement, it is important to keep up even with routine medical visits so please check with your providers. There has been concern about an uptick of preventable diseases because kids are missing their scheduled vaccines, and there has been delayed treatment of things people need to be treated for.
We have avoided any hospital stays, mostly because he is able to go to an infusion center a few times a week for IV hydration and medication so we don’t have to rely on Urgent Care or the dreaded ER.
Growth and Silver Linings
Often difficult times also bring about growth and not all is negative. I believe that to be true for many of us coping with our new way of functioning. What has been positive for me during this time? Our family being together has certainly had its ups and downs but we likely never would have had this time together again since my older son went off to college. We were never empty nesters and some of my friends who were are struggling more than we are because they had had a taste of that and were digging it. No more! Kids are back, eating more than ever, creating more laundry and with no end in sight. Sometimes (a lot?) I just want to be alone but for the most part, I have managed to function within this situation. I created an office space in the garage for myself.
I am meditating a bit more and I like the Waking Up App. Doing it more frequently has accelerated the benefits I receive from it.
I have been able to accept more readily that some days are harder than others, that things will pass, and likely tomorrow will be better. In the beginning of this whole thing, I couldn’t concentrate. I was tired, anxious, and my older son was sick with what was likely coronavirus. I was cleaning and cooking more and still helping Lowell manage his Crohn’s. Now I am trying to find more balance with all of these things. Some days I can concentrate better and I have been more productive. Cleaning closets, planting a small garden, writing and reading more, and reworking my garage to make it my own personal workspace.
I think we all need to learn to be kinder to ourselves. I am more accepting of what I am doing, the choices I am making, and getting clearer about what I actually want to do. Do I want to bake today or make a complicated dinner? Or not. And then longer term, how do I want my life to be different when things get back to somewhat of a normal routine? (But for real, is that going to happen??) These are slight shifts and I don’t think this would have happened in the same way if there was not a pandemic. I was forced into trying to figure out how to better navigate things, and had more time to practice better ways of handling negative thoughts. Start with just acknowledging you have a negative thought and that it is really just a thought and not reality.
Connecting to Cure
Now that it set in that it will be a long time before we get back to all being together at a venue listening to great music, how are we going to have our events? We just started discussing pivoting to an on-line event. We don’t know what that will look like yet but hey, I am getting more comfortable with the unknown and I know we will figure it out.
For now, we are happy that we have been able to offer classes to our IBD community such as exercise, yoga, art, and mindfulness. If you are an IBD patient or caring for someone with IBD, join us. Now that these classes are on line, we welcome those outside of Los Angeles as well. Email us at connections@connectingtocure.org.
Stay safe and be kind yourself and others.
