The Thread of Chronic Illness
It’s an ordinary Thursday in LA and I have just returned from the second of two trips I took this summer. The sun comes up so early as the days grow longer and it feels like it is light forever, the sun baking the concrete and all of us living in the parts of the city that are less populated with trees, beaches and mountains. The blackout shades I have leak light at the bottoms and sides, and in the winter these little slivers of light seem less severe.
It’s hard to sleep when it always seems light. I mean, there are places, further away from the equator where during periods of the year it never gets dark. I suppose one gets used to this and sleep is just sleep at the times that it is supposed to be regardless of light. My observation is that for the last 10 years or so, with climate change making it hotter and what feels like a stronger sun, the summer in Los Angeles feels a little more oppressive. I know, I know, complain about LA weather-some people find this outrageous! But having grown up on the east coast with seasons, different light variations, and unpredictable weather that includes rain, thunder, snow, and clouds, the monotony of 25+ years here on the west coast and it’s smaller window of temperature and precipitation changes, still feels less familiar, less like this is what weather is. Cold, snow, rain, humidity are in my DNA-and that’s not to say that I always enjoy such weather, but it is what feels “normal” I am not going to lie, I certainly don’t miss the brutal summer humidity of the east coast which never failed to cause bad hair days where I was tempted to just chop it all off. Frizz be gone!
Although so far this summer, the heat has not fully expressed itself, (just wait, September and October and even November are the deceptively warmest months here,) I had decided a while ago that it would be a good idea to travel a bit this summer. Trips were based around certain things, like my son Jonah working back east this summer at the Hartford Courant. I went to Connecticut at the end of June to help him get settled, and I turned it into an east coast trip, going upstate to Woodstock where I grew up for a few days then to New York City after to see friends and meet some people I have connected with through our charity. It was lovely to be back in familiar territory, rain, greenery, relaxing drives in the country-you know driving 10 miles in 10 minutes as opposed to LA where a 10 mile drive can take an hour at times.
It is sometimes difficult and often stressful planning such trips when I am leaving my son Lowell who has Crohn’s disease. Although he is 19, when your child is living with a chronic often-unpredictable illness, you never know what is going to happen. He is more independent and can manage aspects of his care on his own, but it still sometimes feels like he is the 13 year old who just had his first surgery, or that 8 year old who needs me to pick home up early from school, or that 2 year old who was just diagnosed. Developmentally we are not quite at the parental separation, letting them leave the nest phase because this is another aspect of living with IBD — that this typical process can get delayed.
When I travel, I leave notes about things-reminders about any appointments, meds that might need to be refilled, etc, and ask him to report to me how he is feeling. Sometimes he and my husband don’t want to worry me so they might just say all is fine, when maybe it is not. I have told them to just be honest; I want to know what is going on. Obviously if there was a hospital stay required or anything more uncertain, I would postpone, delay or return from the trip. For the most part, though, Lowell being older has made it easier for me to travel and of course my husband is here to take care of things, and other friends and family can step in. Mostly, it would be hard to just be away and feel carefree and relaxed if I things were to escalate beyond the usual baseline of his daily chronic illness existence.
After the East Coast trip-the upstate part in Woodstock was relaxing. I visited, houses I used to live in, places I used to work, old friends, saw deer (Lyme disease-anxiety), and even a bear. Then I went to the city where it was hot for June, but it was fine. I walked, ate, visited people, and worked out here and there. I didn’t make too many plans but just let myself take it easy and see what I was up to doing each day. Often when I go to NY, I have plans all day every day, meet this person for breakfast, someone for coffee, throw in a museum visit, shopping, dinner, drinks, etc. and it’s fun but sometimes I just am eating and talking all day. I intersperse it with walking everywhere to burn off the indulgences, and subway rides by myself observing the always-fascinating NY Street and subway scenes.
I had already planned a trip with friends the following weekend to Colorado for my second visit to Red Rocks to see the Avett Brothersagain, as this is the best venue to see them. (Springsteen beware the Avett’s are getting up there on my list of must see, never miss, always listen to bands) I was then going to Aspen for a few days, a place I had never been and it was a summer outdoor paradise.
I was home for 4 days in between these trips. I got a migraine. This knocked me out for at least 2 of the 4 days I was home. Lowell was holding steady but me being sick unexpectedly triggered him, part of it was about his own health struggles, and I believe part was him seeing me not feeling well, and maybe fear about, hey, what if I get really sick too-then what?
I took it easy on July 4thand drank lots of water to prepare for the Colorado altitude and my 6 days away. By the time I flew to Denver, I was feeling mostly better but I was anxious about being away, about not feeling well and let’s not forget plane rides are not my favorite. I had lovely friends I was traveling with or meeting there. I arrived on Friday but it took me until Saturday night when we arrived at the incomparably beautiful venue of Red Rocks, and the first appearance on stage of Seth and Scott Avett with their reliable and talented band, to really start to relax. Their set list that night was spot on, and they ended up doing a bunch of songs from the I and Love and Yourecord in the middle of the show. They were kind of perfect that night, refined, talking just enough, genuine, and it was a warm night. The rain and hail that fell the night before where apparently mid-concert there was a delay, was nowhere in sight.
It was a restorative experience, yes, I sound hippy dippy, blah blah, blah but remember, my roots are in Woodstock.
The next day I drove to Aspen by myself, and Colorado is a nature filled oasis of mountains, greenery, and majestic views. Aspen itself was an ideal getaway for me. My friend and I did yoga on top of the ski slope with views of the still snow topped mountains, hiked, biked, relaxed and walked everywhere.
Upon my return-well you know how that goes, piles of mail, emails I had been neglecting, C to C work I needed to get back to, meetings for a new project I am working on-it all came crashing down. On the second day after I got back, Lowell was not doing well, was very fatigued, dehydrated and had increased pain so that led us to the ER and an overnight stay at Cedars. I tried not to let it erase the renewed calm Aspen had instilled in me but both mine and Lowell’s patience for being in the hospital has dwindled. Repeat his allergies, list the meds, rate your pain from 1–10, the pharmacist asking about the vitamin D he takes, and even the very kind volunteers offering magazines and puzzle books, are all too much. We are over it. The chair-beds they now have for guests to sleep in that are confining and too hard made for basically no sleep at all so the Aspen glow quickly dissipated. We were there for less than 24 hours, he got what he needed to gain some energy back. He is on a new injectable medication and likely he needs it more often than it is approved for so that was partly the cause of this incident. And as usual, we now have to fight insurance for more frequent dosing.
Back to the ordinary day I woke up to after my Colorado trip. When coping with a chronic illness, what I have learned is that there really are no ordinary days, no ordinary trips, and no ordinary ways of navigating the world as the thread of chronic illness runs though everything. We have good days, and Lowell is still continuing to function better, working part time, seeing friends, coaching a kids basketball team, and he finally got his drivers license. I can go away, listen to the Avett Brothers sing about “hope in every morning song” drink a Coor’s light because, hey, I was in Colorado, and reconnect with the mountains and rainy weather of my childhood. However, IBD is always there, in the back of every moment, in the corner of every word, or in the shadow of every sunset.
