This month, I flew to North Carolina to visit my sister and meet her first baby. I flew from Detroit to Charlotte in a quick non-stop flight. This was my first time navigating an airport without a wheelchair in years. The last few times that I did go through an airport, my nystagmus really acted up with all the people moving around. My eyes were scrambling.
The first wheelchair flight was to Rochester, Minnesota to visit Mayo Clinic. There I had an MRI and was diagnosed with brainstem encephalitis. I was also diagnosed as having PAN by a neuro otologist. This is actually an ear doctor, but he had extensive expertise in PAN and balance disorders. My eyes were so bad I couldn’t read or watch tv. I couldn’t walk across a room without someone holding me up and guiding me. I’ve had acrylic nails for seven years (only way I could stop biting them) and had them done highlighter yellow. Because then I could see them. Probably the only patient at Mayo stubborn enough to still get her nails done.
The second time, I flew back to Mayo for another MRI. This confirmed how much of brain atrophied. I wonder if MRIs show how much fun I had when I was younger. “And that part that atrophied is from your twenties…”
The third flight, I definitely wasn’t as bad off. I still had to take a wheelchair through the airport. Don’t get me wrong, I don’t mind getting a lift, but airport wheelchairs are hell on your tailbone. I went to Raleigh, North Carolina to visit my family and celebrate my birthday. This when I attempted to get IVIG every four weeks, instead of every week which I used to get. The change was too abrupt. My eyes were very sassy. Now I get IVIG every three weeks. My eyes are not perfect at all, but they’re relatively stable. If my PAN acts up, I like to say someone will get seasick if they look into my eyes.
This time I really wanted to get through the airport without a wheelchair. Apparently, Charlotte Douglas isn’t a great airport to try this out on, but it was completely fine. I didn’t want to have to go to baggage claim and back to Uber pickup, so I didn’t check a bag. I didn’t think I’d be able to walked with a wheeling suitcase. Balance isn’t my strong suit. My PT’s original balance goal for me was to stand on one foot for ten seconds, then it was three, and recently she said “well I guess we’re not going to meet that goal!”
I ended up securing a duffle bag to my walker with bungee cords. This way I could sling it over my shoulder during boarding and use my cane through the aisle. The man next to me eagerly took my bag and pushed it into overhead storage. I never had to ask for help, people just bent over backward to assist me. I try not to think the worst of humanity, but I didn’t expect everyone to be so nice.
And yes, my duffle bag is covered in dinosaur bones. My son’s bag fit best.
The trip itself was great. I got lunch with my old boss then took an Uber in a hotel in Huntersville. I always used to live in cities and forgot the convenience of DoorDash and being able to Uber everywhere. I got a pizza and a six pack of Pernicious by Wicked Weed. For breakfast the next morning I ate the rest of pizza, because I don’t leave soldiers behind. Then I got to visit my sister and her five-week-old baby! She was lives pretty close to the hotel, so no Uber required, she picked me up from there.
I love babies, especially when they aren’t mine. Dirty diaper? Football pass back the infant to mom or dad. I’m so glad I got to see her and the baby. She’s my youngest sister and it’s her first child. It was so important to me to see both of them. Come hell or high water, I was going to get there. Good thing he wasn’t born in 2024, because I don’t think I would have had that opportunity.
I had a great time watching college football with her and my brother in-law. My dad was in Raleigh at the time, so he came down to Huntersville. The baby was wearing an MSU/UM onesie that said “either way I win” until he promptly peed through it. The baby ended the day wearing a MSU onesie. I didn’t get a say on that.
It was amazing to get to see my sister and meet my nephew. It also felt so good to be able travel by myself again. I feel like my autonomy has been completely severed in the last couple years. I’ve always been fiercely independent. I owned my own house, drove the car that I saved up to buy (well the bank owns that, I still have hefty car payment), was starting down a new career path. Now I don’t work, don’t drive, and live with my parents. I understand that much of that is going to get better, but right now that’s where I am. I just want the old Jillian back. In the meantime, I’ll continue to say no when my mom offers to drive us by my old house, because it just makes me want to cry. And seeing my car in the driveway? Honestly makes me want to vomit.
I realize this was just a couple nights in North Carolina and a far cry from my previous travel adventures, but it felt really important to do this and not just sit at home and wait for LTD checks to come in.
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