Off the Grid Sounds Great Until You Need Ostomy Supplies

Shooting the Shit: Entry #2 – Living off the grid with an ostomy.

I have a recurring fantasy about disappearing.

Not in a dramatic being abducted kind of way. To be completely honest, with all of this pent up rage and prescribed steroids, I often wish a mother fucker would.

I mean getting away like buying a few acres in the middle of nowhere and parking a camper. I’ll be too busy growing all of my own food and pretending society no longer exists to keep a big house clean anyway.

No emails, phone calls, texts, or traffic. No appointments.

No people asking me how I’m feeling or suggesting celery juice like they’ve personally solved autoimmune disease.

Just me, my husband and enough grass to keep cattle happy.

Unfortunately, Crohn’s disease and living with an ostomy have informed me that this plan lacks several key components.

Like… a pharmacy.

And an infusion center, a hospital, and a decent job with health insurance to cover all of that expensive shit.

Living off the grid sounds incredibly freeing until you remember your body, thanks to an autoimmune disease, is still very much on the grid.

I can’t exactly whittle my own ostomy bags.

I require multiple specialists who see me so often that I sound like I hold a degree in some kind of medicine just for being able to list off their titles.

I have a gastroenterologist. A colorectal surgeon. A dermatologist. An infusion nurse. A gynecologic oncologist. A neurologist. A primary care doctor. Lab technicians.

And at this point I should have a punch card at the MRI department.

Buy ten scans, get your eleventh existential crisis free.

Sometimes I watch those survival shows where someone catches a fish with a stick they found and builds shelter out of moss. I think of how simple things could be and how I could give up technology at the drop of a camper in the woods.

But then I remember about the ostomy, the Crohn’s, and the constant medical care required for me to just get through the fucking day sometimes.

The part that really gets me ready to take on those would be attackers is that before I got sick, I actually could have disappeared. I could have packed a backpack, gotten in the car, and figured it out as I went.

Now everything requires a risk assessment.

How many supplies should I pack?

What if I get a blockage?

What if I accidentally find myself more than thirty minutes away from a bathroom?

Chronic illness doesn’t just change your body, it changes your relationship with freedom.

There are people who can wake up on Friday and decide they’re driving across the country on Saturday.

I need at least one spreadsheet.

Maybe two.

Three if we’re crossing state lines.

There’s something psychologically weird about knowing your independence depends on UPS, prior authorizations, insurance companies, refrigeration, pharmacies, biologics, and whether your doctor’s office remembers to send something that my life may depend on before four o’clock on a Thursday.

Still…

I think there’s another way to look at it.

Maybe being “off the grid” isn’t really about geography.

Maybe it’s deciding that your illness doesn’t get unlimited access to your joy.

I may never disappear into the woods and become the mysterious swamp witch I was clearly meant to be.

But I can grow tomatoes.

I can sit outside and be eaten by mosquitoes.

I can ignore my phone for an afternoon and play in my greenhouse.

I can watch birds instead of the news.

I can make my own little corner of the world feel quieter, even if I still have to drive into civilization so someone can suppress my immune system or scan my body for what feels like the millionth time.

It’s not exactly off the grid but it’s close enough, I guess.

If you’re reading this with an ostomy, Crohn’s disease, ulcerative colitis, or any other condition that has turned your calendar into a full-time medical administration job, you know what I’m saying.

The things we can’t do are real, even if there are plenty of things that we can.

Tell me how we’d all survive the apocalypse or how you would make living off the grid with an ostomy work.

Because unless one of you has figured out how to domesticate a bear and train him to be a medical supply courier, I think civilization still has us by the balls.