“You don’t have to feel guilty,” my therapist told me. “Just try to enjoy yourself. You won’t make the trip better for anyone by feeling guilty.”
I made the mistake of telling my dad about this exchange, so whenever anything remotely inconvenient occurs, he says, “You know this isn’t your fault, right?” I huff and puff and fake a smile, all too aware that my therapist is right: Guilt doesn’t serve anyone, least of all my parents, who are not only my caregivers but my best friends, roommates, and occasional travel partners.
They’re protective of me, and I of them. Whenever we encounter a minor annoyance, I feel a surge of adrenaline, that superhuman cortisone flush when moms dart in front of a moving vehicle to save their children. I’ve written about this before, but it’s become particularly apparent to me now that we’re halfway across the country. Tensions rising? Break the ice with a well-timed joke. Stress of the trip getting people down? Deflect with a quip about how things could be worse, First World problems, so on and so forth. It’s emotional to juggle three balls in the air, tracking their movements so that none of them fall and break the spell.
Yesterday we drove from Nevada to California and spent a few hours in Yosemite National Park. (Fun fact: I once thought that Yosemite was pronounced YO-se-might.) We were supposed to spend the night at a lodge in the park, but it turned out they couldn’t honor our reservation, so they sent us to another hotel about 20 miles away, down a winding, treacherous road full of switchbacks and drop-offs. My mom spent hours on the edge of her seat, white-knuckling the grab bar, trying very hard not to look down while simultaneously telling my dad to keep his eyes on the road.
We were tired and hungry. We’d driven over 10 hours the day before and were ready for a laid-back night at the lodge. But we didn’t have a choice, so we set out again, all of us trying to retain some shred of optimism. I don’t remember cracking a joke, but I’m sure I did. Anything to keep their spirits up.
Of course, the lodge didn’t bother getting us an accessible room. We got to the hotel and were told that, well, they didn’t have any accessible rooms available, but they did have a chalet we could check out, inaccessible — according to code — but more or less usable. It was 8:57 p.m. We were tired and hungry. The hotel restaurant closed at 9 p.m., but they agreed to keep it open for us, the poor, bedraggled, on-edge Minnesotans with sunburns and hat hair.
“At least we didn’t drive off the edge of a cliff,” I offered as we left the restaurant. My parents laughed.
The chalet was, of course, inaccessible. I couldn’t even get my chair through the doorway, so we left it in the van overnight. The room was tiny. My parents tripped over each other in their haste to set things up for the night. We weren’t hungry anymore, but we were very, very, very tired. My mom had that look in her eye, the one that meant she was going to turn into a pumpkin at any moment.
Finally, the chalet was quiet. Mom was upstairs, sleeping off the stress of switchbacks and drop-offs. My dad and I ran through our nightly list. Feeding pump? Melatonin? Earplugs? Sleep was close, so close we could taste it. All Dad had to do was plug in his phone.
It is now day five of our two-week trip. We’re about 200 miles away from Los Angeles. We’re frazzled, but we made it through the night. As we crawled into bed last night, Dad said, “At least we have a roof over our heads.” A thin, squeaky roof, but a roof all the same.
My therapist told me not to feel guilty. It’s hard, especially on a day like today, with everything stretched a little too thin. But I’m trying — to crack jokes, keep our family grounded, insist on the bright side of two-week road trips with lots of question marks between here and home.
I don’t know if the trip will be worth it. But I do know it’ll make a great story. The closing event of this year’s Cure SMA conference is a panel called “It’s a Wonderful Life” (in which our very own Kevin Schaefer will be participating), which is delightfully ironic. It is a wonderful life. Ridiculous and unpredictable, yes, but the question marks are what make it worthwhile.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.