Month: June 2016

Traveling While Chronically Ill

~ Kristin DeMarco Wagner ~ 2 Comments

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.

Sigh.

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

Orlando

~ Kristin DeMarco Wagner ~ Leave a comment

FullSizeRender (3)

When horrible things happen I want to circle the wagons. I want to take the people I love and hold them next to me. I begin to imagine a new life where I take my children to the highest loneliest mountain cabin to keep them away from the world, or at least the world of humans.

The day of the Newtown shootings we were packing our bags to go downtown, to see the Christmas tree at Daley Plaza. I spent the day with a hole in my heart and a fake smile on my face trying to make our trip fun and breezy. It was meant to be a time for my two boys to explore the marvel of Chicago, the wonder of what can happen when millions of people come together to build and create. I hid in my heart the knowledge that just one stranger coming together with one small safe school could destroy, could obliterate everything. I don’t want my children to know that.

Today I dropped them off at camp and am relieved for a few hours to grieve for Orlando, away from having to explain why I am grieving. I am not hiding them away from the world, but I am hiding them away from the hateful things I have seen, read and heard. There is a deep pit of disgust in my stomach knowing that there are people in my own country who have said, of innocent people being murdered, that because they were gay they deserved to die. I am scared for my Muslim friends and neighbors who must have heard the identity of the shooter with a horrified gasp, knowing that they would be put on trial for crimes they did not commit. I am furious that a Republican “friend” is almost gleeful that the shooter was a registered Democrat because that “proves” something. I am enraged that people who want to restrict gun control laws are now saying, “This guy was on an FBI watch list and we didn’t stop him?” Our government’s hands are tied, we cannot block even highly suspicious people from access to guns because that might restrict the rights of responsible gun owners; the CDC is not even allowed to study what might possibly cause so many gun-related deaths because Congress will not allow it. We aren’t allowed to even mention limiting access to military grade guns or extending background checks, because, we are told, it is a slippery slope and all guns would be pried out of citizens’ hands. If we suggest ugly homophobia may have contributed to this, we are pushing some sort value-diluting agenda. I want to scream. I don’t want my children to see me scream.

Because I want to have a plan when I see them again.

I want to review what I have tried to instill in my boys. Have I taught them to celebrate love and to be as wary of hate as of a rattlesnake? Have I made sure to teach them to love people both similar and dissimilar to them? Have I told them that when horrible things happen people are scared and want that fear to subside-which means they may hurt people in an effort to feel safe themselves? Have I taught them that people are capable of horrors, and that stemming those horrors is often the responsibility and duty of ordinary people bearing witness and being a force for good? Have I taught them that we should grieve, but we cannot let grief overwhelm us because our ability to make the world a better place would be stunted? Have I taught them that they matter, and that what they do day in and day out can change the course of history? That drops of kindness in a bucket, once enough have gathered, will spill over and cleanse us all? Have I taught them to speak up, and taught them that it is hard work to do so, and that hard work is often necessary in life?

If I have not done these things, I haven’t done enough to help. I need to make a plan to teach them these things. This is my path forward, the only thing that keeps me from hiding myself and hiding them so far away that no one can touch them. A life without being touched by another human being isn’t a real life. We have to figure out how to live in this world one way or another.