Essay at The Refresh

Image Description: A family of four, two boys, a mother and father, bundled up in coats in front of a glacier

Hi Everyone!

I have an essay/article up at The Refresh called Traveling While Chronically Ill (clicking on the title will take you there). This is a reworked blog post from last summer about my experiences planning carefully before vacations. This version has some more information/tips that I find helpful.

Hope you’re all doing well!



This Should Be Mentioned in the Brochure


While I love mountains, with their massive size and impressive countenance and sheer arrogance, I usually do better admiring them from afar. I have a fear of heights and the thin air seems to make me feel unwell – my breathing is labored and since my breathing mimics a panic attack, my brain seems to think I should be feeling far more anxious than I am and begins to really get nervous. Most times I have tried to enjoy mountains I have gone from almost sea level to a peak in less than a day, I’ve been assured by guidebooks if I had only let myself get acclimated longer I would have been just fine. We never reached the accessible peak in El Yunque in Puerto Rico because I got nervous and couldn’t breathe and so got more nervous and pictured my then five-year-old son falling over the edge of a cliff and I made us turn around. In Alaska this last summer we went from the coastal city of Anchorage to Polychrome Pass in Denali National Park (at 4,000 feet in elevation) in the span of twenty-four hours and I was suffering. It didn’t help that I had also picked up the stomach flu from one of the boys who had picked it up on the airplane ride in, but that is a different story. The mountains are beautiful and so vast that I finally realized that there are places on earth we won’t ever be able to truly destroy-we would kill ourselves off first before we could uproot Denali-and that is comforting. I now really understand the feeling of being built upon rock instead of sand, solid and unmovable. But the mountains aren’t mine, not the way the sea is.

Seward, Alaska is about a two and a half hour drive south of Anchorage. You leave town by Highway 1 (there are really only a few highways connecting all of Alaska) which winds for about an hour around a massive ocean inlet called the Turnagain Arm (named so because explorers looking for a Northwest Passage thought they had it found it but became landlocked and had to regretfully turn again). Two lanes cut between the Chugach Mountains and the ocean, leaving little room to not feel claustrophobic or nervous. Well, for me, my husband seemed unphased driving past harrowing cliffs. Once you leave the immense Turnagain Arm behind, you wind through more mountains and past yellow diamond signs that warn of avalanches in the winter. It is not winter and I am grateful for once that the Chicago suburbs are flat and home to a million plows and salt trucks. Finally it doesn’t seem as if the mountains will ever end when you come upon the sea, abruptly enough you can imagine driving off of a pier because you glanced in the rearview mirror at the wrong time. You have arrived at a port town, a hub for cruise ships and fishing fleets, an access point to fjords and glaciers and water that is clean and cold and a strange crystal green.

Here is where we needed to come to see the other half of “things we may never again see in real life”. Denali gave us mountains, and gold rush cabins, grizzly bears and caribou. Seward will give us whales, bald eagles, puffins, glaciers. I have prepared. We have sea-sickness bands, all of us. We have leggings and winter coats and hats and gloves (things that took up a whole other suitcase, things we will only need here). We are set to board a tour boat with catamarans (which I am told help to prevent seasickness). There is an outside deck, and an inside cabin with huge windows where, when we get cold and tired, we can rest and sip hot chocolate or tea and just be taken to beautiful places. This is more exciting to me.

My childhood was spent on boats, every summer until I was twelve. Each Saturday we would drive an hour or so north to the Chain-Of-Lakes. We had speedboats, the first one I was on as a toddler I am told looked like the Batmobile. There was Big Red, then a white and teal boat that I know traveled to Missouri with us one family reunion, and finally the Over-Ripe Banana Boat which was banana yellow with inexplicable brown glittered panels. Admittedly the names for the boats were my own, but maybe I shared them with my family at the time. My mom would pack a cooler and eventually four children up in our mini-van, my dad would drive us to the slip then steer the boat all day. The three of us who took after the Italian side in looks would be slathered in SPF 8 before getting strapped into life jackets, my Irish red-headed brother got SPF 50.

The two things that made me happiest on the boat was when we would be going fast enough to feel wind pushing back our hair and to get to stare endlessly at the sparkles on the water as sunlight hit the tiny peaks of waves. I could spend hours just experiencing those two things.

My husband had declared early on in planning this trip that we needed to find a whale-watching tour, and that we would go as far as necessary to find a tour that could all but guarantee we would. Nobody, on their website, would be so foolish as to promise that you would get to see orcas and humpback whales, but I had read enough reviews that I felt fairly certain we would. I secretly would have still been overjoyed to be on the water without spotting any aquatic life, but I knew he wouldn’t have. I held my breath, just a little, for his sake.

I needn’t have worried.

Within the first half hour we spotted a pod of orcas, a family that the fisherman and tour guides knew quite well as they like to visit the boat and steal fish off of lines. The patriarch of this group had a six-foot tall dorsal fin, and researchers had given him the name “El Dorado”. He led his family, calf in tow, not more than forty feet from the bow of the boat. We were all on the deck watching as their heads would peek up in a friendly gesture and then they would disappear and reappear either further or closer than you would have thought. It was disconcerting to not be able to predict where they would be, most of their journey beneath the waves unseen and their speed and depth and maneuvers all a mystery. They stayed with us for a good long while and we stayed with them until the captain felt we had had our fill and knew we had more to see.

Over the next six hours, we would sometimes skim the water at about 26 knots (I know because they had TVs with our coordinates and speed all throughout the cabin) fast enough that the wind would whip your hat off your head, but not so fast that you were automatically forced inside. Then we would loll in the ocean, trying not to frighten away immense sea otters floating on their backs in the middle of nowhere, or sneaking up on a pod of humpback whales. One adolescent whale (apparently the size of the creature made its age obvious to the captain when it wasn’t obvious to the rest of us) was showing off, leaping out of the water again and again, slapping his fins, doing the backstroke. We glided past the perches of sea lions and bald eagles, and I got to see my husband and kids rapt with attention the entire time. We got to find out that puffins flap their wings like they are graceless heavy hummingbirds when they try to take off. And we felt nothing but affection for their goofiness.

Told we would be going to the glacier next, I brought my youngest into the cabin to get extra layers put on, while my husband stayed at the bow of the boat, camera around his neck, sharing a moment with my oldest. Once we got to the glacier, where balls of ice snapped, crackled and popped in the water below us, their teeth were chattering. The crew used a net to fish one crystal ball out of the ocean for us to hold as we stared at this massive formation, thundering as its blue sides calved. We had been wearing short sleeves on shore, and now we were wearing leggings and winter jackets, hats and gloves. This was the last big thing on the itinerary for this tour, a culmination of ALASKA, writ large. The photo-op to show us later that we had been in this magical place, that we had seen these magical creatures. We had gotten to visit them, stopped by for a chat, enjoyed their home instead of forcing them to perform for our amusement in ours. We got to gaze up at a sheer wall of ice that had been crumbling and advancing for thousands of years without really diminishing. This was it.


The ride back was supposed to be the denouement. The bobbing rest of being brought back to shore again, complete with just-baked chocolate chip cookies and the opportunity to purchase a booklet of pictures taken near the Kenai Fjords we had just seen. I wasn’t ready to be done, though, and while most of the passengers and my own little family stayed inside I went back out to the bow.

This, the sea, this is mine.

Now was the time, though everyone on board had been friendly, gracious and excited as we were, I was finally free from having other people in my sightline. I could pretend that I was alone flying above the icy water. Away from the glacier, now, I took off my hat and let the wind whip through my hair, twisting and knotting and tangling it up however it liked. All around me was the sparkle of blue-green water, nearly three hundred and sixty degrees of dazzling expansiveness. The enormous rock formations loomed as we passed them, I filled my lungs over and over with beauty and speed and freedom. When I thought I had had enough I began to go back towards the cabin, but would stop and stay longer. Once forty-five minutes passed I felt guilt at wanting to pretend I was alone so long, and came back to see how my children and husband were faring. One of my children though wanted to go back with me, and I was overjoyed. I helped guide him bracing my feet against the rock and sway feeling more securely grounded than I had in a long time.

I wordlessly shared my beauty with him holding his shoulders and smiling. When he had breathed deeply enough, I consented to going back to rejoin the no less beautiful world of my family again. Then my other son wanted to have a moment with me on the bow, too, and I happily went back one last time. With him, I finally saw that we were really approaching shore, that this would be closing. It had to, and I finally felt ready to let it conclude. I hadn’t been ready to let it go before I really needed to, but now felt steady knowing I had received enough to sustain me for a long time after.

This is mine, this was something given to me that cannot be taken away.

And they didn’t even advertise this as part of the tour. They didn’t know how much I needed that.



Chugach, Bears and a Suburban Mom

These were bears we saw from a bus, several hundred yards away. When you know you’re protected, they’re a lot cuter. Awww.

The first Saturday morning of our family vacation found the four of us at the Albert Loop trailhead near the Eagle River Nature Center of Chugach State Park, Alaska. This was supposed to be an easy, well-kept, three mile loop that would take us past crystal clear streams to a spectacular view of a mountain valley. We assured our nine and seven-year-old that they would be able to handle the hike by showing them through phone apps how far we had hiked other days: one and a quarter miles around University Lake next to our hotel, one and a half miles on the Tony Knowles Coastal Trail in Anchorage. Just wandering around the fourth of July fair was probably a couple of miles when it was all said and done. We all felt pretty confident.

We showed up about an hour before the nature center actually opened and read the notices pinned to the door to get oriented. There were bears nearby, and what we needed to do was to stay together and stay loud. You never want to surprise a bear, but he will steer clear of you if you are noisy and generally annoying. If a bear approaches you, you should stand your ground, and never ever run as they may begin a chase. Another chart explained all the reasons why standing your ground is helpful. A guidebook I had assured us that only polar bears stalk humans, and we were thousands of miles from polar bear habitat. As a last resort you could use your bear spray if the bear charged. We didn’t have bear spray (before researching this trip I wondered if bear spray was for spraying on ourselves to repel bears or if it was for spraying at the bears-for the record it’s something you spray in a bear’s face).




We live in the suburbs of Chicago. When I camped as a little girl the most you had to worry about was a raccoon in your tent. A goose coming at you aggressively. A squirrel getting a little too familiar with humans and peeing all over your gear. No bears. No moose. Nothing really… deadly.

And here I was about to march my kids through bear territory for a vacation memory. Without a guide. Without other people on the path. Without bear spray (God help me, if I ever had to use it I’d probably spray myself in the face instead and just be putting a peppery garnish on the bear’s next meal).

But, I do tend to get anxious when there is nothing really to be afraid of. My husband looked like he was still game, so I swallowed it down and we started off. He didn’t look nervous until we were hemmed into a narrow pathway with very high grasses on all sides of us.

Up until that moment we had been talking casually, searching the trees and shrubs around us for less intimidating wildlife. Once we got to the grasses the need to keep noisy became something we both felt strongly about. The boys were confused as to why we needed to keep chatting about nothing, so my genius husband got them talking about the app “My Singing Monsters”. I swear to you that they did not stop talking over the next hour and a half. About two minutes into the boys talking, I realized that they would keep us constantly conversating, but they weren’t particularly loud. I added in claps, loud cheerleading claps with an ever-changing rhythm. We trudged on, past the grasses and through thickets of trees and mosquitos, scaring away every animal within earshot. Except a Great Horned owl. He did, however, seem annoyed.

About three quarters of a mile in we came across a path sign saying that the normal trail had been washed away by recent rainstorms. We could retreat or follow a bypass route. Hoping that the bypass wouldn’t take us back into low-visibility grass, we stomped forward. The trail became a mass of tangled roots that we couldn’t ignore, so our attention became divided between watching the forest and watching our feet. I clapped even louder and faster, exhorting the boys to be careful as we still had a long ways to go and we could not carry them if they got a twisted ankle. My husband was leading the way, and the boys followed him and I brought up the rear, listening to chatter about how to get new monsters on an app and clapping furiously “We will, we will, rock you.” This was definitely not the serene, life-affirming communion with nature we had been promised. At one point I know I was singing Macklemore’s “Ceiling Can’t Hold Us” at the top of my lungs.

Then off to my left I heard something. It sounded like the loud exhale of a very large creature at about the height of my shoulder and ten feet away. I tried to explain to my husband that I heard something. He looked around, decided he hadn’t seen anything and kept going. Between the mosquitos and the large mammal I was sure was right next to me, I wasn’t about to stop and get super quiet to find out what it really was. (Later my husband would confess that he looked in the trees far away, not the shrubs near me, and excitedly said, “Aw man, I wish you had explained where to look, I bet something was there, that would have been awesome!” to which I replied, “Are you insane?!?”)

We advanced on a bridge and were able to relax for a moment, me shaking out my hands, my husband asking the boys to pause on the “My Singing Monsters” talk for a second. There were crystal clear streams, and interesting birds, and most importantly less trees so we could tell that at least here there were no bears within a hundred-yard radius. We took pictures and trudged on.

Finally we finished, unscathed if a little jumpy. The nature center was finally open and we overheard a worker explain that lots of people saw black bears on the path just in the last day or so. Later on I would tell my husband, “And no one will see any today, you’re welcome other hikers. I did the heavy lifting of scaring them away for you.” He guessed that they were probably the sort of people who were hoping to see a bear in his natural habitat. To that I shrugged and gave a look as if to say, “Sucks to be them, I’m all about the self-preservation.” And I’ll be damned if some hikers think that them seeing a bear is more important than me not seeing my baby boys being eaten by black bears on a family vacation.

We ate granola bars and went to the bathroom and set back out for the half-mile hike that EVERYBODY takes. A lady in a skirt and flip-flops preceded us, holding her iPad up to take pictures on this fifteen minute, totally cleared path. A bunch of other tourists like us walked up and down the trails, totally sure that they would not be part of a bear attack that day. And we were finally able to get quiet for a second and actually enjoy the view.


And as much as I was eventually teased for looking like a crazy lady, clapping and yelling through a state park, the kids and my husband and I all decided that that was enough adventure for us for one day. Possibly for the whole summer.

Traveling While Chronically Ill

Alaska Books

This trip was supposed to happen last year. We wanted to go to Alaska last summer, but we didn’t. The reason sounds spoiled and selfish when I explain, “Well, we didn’t have quite enough frequent flier points to fly first class, so we waited another year.” I sound like a twit. But I really struggled with being okay with flying six and a half hours without guaranteed food, without a guaranteed bathroom, without space to stretch. I have chronic illnesses and I can only push myself so far before I collapse.

It happened when we went to Puerto Rico two years ago. A four and a half hour flight with barely any food left me feeling sick, so sick in fact that my body cramped and lurched in the hustle of a 90 degree airport and I nearly passed out when we finally stopped and ate. On that same trip, which I do recall happily as one of my favorites, I threw up one meal where I was assured there wasn’t any dairy (but I’m pretty sure there was), and had to turn around on a rain forest hike because I felt like I couldn’t breathe from anxiety and humidity. I spent a lot of afternoons recovering from busy mornings.

Last year, in Wisconsin, I had to take an impromptu walk when my muscles cramped up so painfully I was going to get a migraine. A few times I had to prepare and drink a protein shake in the middle of the night because my blood sugar went too low.

Three years ago in Kentucky I was up in the middle of the night crying because my body hurt so much.

I am packing for Alaska now, and each item I put into a suitcase reminds me that I have to plan for the inevitability that at some point on this trip, my body or my mind will fail me. It is going to happen.

I keep my prescription medications, glucose meter and supplements in my carry-on bag. I cannot afford to lose these items. Also in the carry-on will be a 12-pack of dairy-free protein bars that can act as meal replacements or a quick fix for low blood sugar in an emergency. One of my few precious fluid ounces will be my Flonase.

One of our large suitcases holds winter jackets, gloves and hats. In some parts of Alaska it’ll be in the fifties and rainy, and my body cramps up wildly when the temperature drops too quickly. My ergonomic pillow will also be in that bag, so that I don’t wake up with back spasms each morning.

One bag will contain our guidebooks in which I have researched which restaurants near our hotel will have a diverse enough menu that I have a chance of finding dairy-free food. I have a grocery list and the address of the nearest Anchorage Target ready for when we land so that I can get enough non-perishable snacks to last me on a twelve hour bus tour of Denali and a 6 hour glacier tour out of Seward (lunch will be provided, but of course it all has dairy and if I go too long without eating at all I might pass out).

I bought seasickness bands for all of us because we’ve never been on the open ocean and I can’t handle being sick for 6 hours at a time.

We have backpacks, but I have to make sure I don’t overload mine, or my shoulders will cramp.

I can’t wear flip-flops anywhere where we will have to walk a long time, because my legs will cramp and my feet won’t uncurl.

I need to have ibuprofen available at all times, because even a storm rolling in can push me into severe pain  (I have been checking the weather obsessively to try to steel myself).

I will bring make-up because there will be times I get very sick, and I don’t want to look very sick in our vacation pictures forever and ever.

I will bring my notebook with all of our information everywhere we go, because when I feel sick sometimes my brain goes foggy. When that happens I can’t remember simple words, nor can I figure out how to navigate my normal life much less a brand new environment. Knowing my brain is unreliable is scary, and then my anxiety kicks in making it even harder to take care of myself and small children.


All in all it sounds as if traveling is more trouble than it is worth. But if chronic illness has taught me anything it is that anything you want in life is going to take work. An uphill battle just means that the view from the top of the mountain is going to be that much more spectacular once you get there.

Puerto Rico was amazing and tropical.

Wisconsin gave me time when I could just enjoy being with my kids without nagging them about cleaning up toys or doing homework.

Kentucky gave me a chance to see family I love dearly and wouldn’t get to otherwise.

And Alaska? I have never had the chance to see anything like it. I don’t live near mountains, or the ocean, or moose or bears. I might never get the chance to see these things again. I want to see my kids’ faces light up when they touch a glacier, and my husbands eyes widen when he sees an orca. I want to feel the weight of a fishing pole as my son hooks a salmon. I want to smell salt-spray. I want a chance to see Denali.

I want to prove for myself that the trouble, the pain that goes into everyday life, and the pain and trouble of reaching for the extraordinary is always worth it.

Alaska Clothes