Oh, hi there!

Yes, yes, I know. I haven’t written in a while. I am well aware. I guess you can say I’ve had a bit of writer’s block recently, and with the MDA Clinical & Scientific conference fast approaching, I also had a handy excuse not to write for a few weeks.

Which is a good thing, because the conference, and the road trip to Orlando, gave me a lot to write about.

Although I wasn’t technically on the road each day, I was away from home for three weeks, which seemed like an eternity. That is a long time to go without my adjustable bed.

But all in all, it was worth it. I had a great time at the conference, and also had a chance to see my sister and her family for a few days, which made the aches and pains of a long car trip bearable.

Rather than write a long narrative, I feel like making a list instead. I like lists. Most importantly, it’s easier to insert GIFs into a list.

This particular list is not ranked in any order. Instead, it’s 18 thoughts to commemorate the 18 days I was away from home. At least, that’s what I counted on the calendar. If it turns out to be more or less, too late.

This post is broken up into two parts. Even in list form, I can’t help but write thousands of words.

1) I like conferences. Of course, I tend to only go to conferences where I am speaking – which might be why I enjoy them so much – but even when I am not speaking, I enjoy the energetic atmosphere at conferences. The conferences I attend are also usually patient-centric or muscle disease related, so they have the added bonus of being informative and relevant to my life. Although this was a work conference and I was there representing MDA, I still had the honor to speak at a dinner Monday night and share my story with my biotech and pharma colleagues.

Conferences are also great because they give me a chance to visit new places. I haven’t traveled widely in my life, but in the last three years, because of conferences, I’ve been able to go to Chicago, Washington, D.C., Dallas, and now Orlando. This was my first time in Florida!

These trips are especially meaningful because I don’t get out of the house much anymore. Conferences give me something to look forward to on my calendar.

2) We briefly considered flying, looked at the available flight inventory, and decided to drive instead. Although flying would have gotten us to Florida much quicker, the hassle of flying outweighed the benefit. I like flying, but in my current state of mobility, it would be a complex operation to get me on and off the plane. Flying is stressful for any family, especially ours. There’s a lot to deal with, whether it’s fighting through crowds at the airport, carrying our luggage as dad pushes me long distances in my manual chair, getting onto the plane, transitioning me into an aisle chair, pushing me down the aisle, transitioning me to my airplane seat, etc. Only to do it all in reverse once we arrive.

And what if I have to use the bathroom once the plane is in the air?

You get the picture. Suddenly, driving doesn’t seem so bad.

Now don’t get me wrong. Wheelchair users fly all the time, but the process requires a high threshold for frustration and BS. Airplane accessibility is a topic for another post, however. I’m already over my target word count.

At least by driving, although it took 20+ hours total, we were in control of the route and when we stopped. We also had room to bring more stuff, which meant…

3) …I could take my power chair! At first I wasn’t thrilled with the idea of driving down, but once I realized I could bring my own chair, I was on board. My chair is quite comfortable and more importantly, it has thigh rests.

Why are thigh rests important?

This is kind of embarrassing, but my hips are very weak and my legs spread open very easily. Unintentional man-spreading, if you will. In addition to being self-conscious about this, it’s not a comfortable position to sit in all day. Fortunately, my chair has adjustable thigh rests that keep my legs in check. If I was to rent a wheelchair, it would most likely be an older chair that didn’t have thigh rests.

Another benefit to my chair, aside from comfort, is that it has a seat lift, meaning that I can have conversations at eye level again. It may not seem like much, but it is empowering to be able to talk to someone without them literally looking down on you.

The upcoming trip motivated us to trade in our old Dodge Caravan for a newer, slightly used version. Aside from having a more reliable ride to take on a 2,000+ mile trip, the new van meant that my power chair could fit in the back. The van doesn’t have a wheelchair lift, but with our portable ramp and a little careful maneuvering, it slides in. There will come a time when I have to sit in the chair as I’m lifted into the van, but for right now I can sit in the front seat.

Of course, getting the chair into the van using this method is easier said than done, as evidenced by the numerous, numerous F-bombs my dad dropped while figuring out the best way to do it.

In the end, all the hassle of bringing my chair was worth it. Until this trip, I had never been able to take the chair out of my house. To use it at the conference in a public setting was a huge thrill. For the first time in forever, I felt like I had regained some freedom.

It goes without saying that I would still rather not need a wheelchair than use one, but the chair has its perks. To not have to worry about falling was a relief that cannot be overstated. It freed up my mind for more important cognitive tasks, such as paying attention to conference sessions, finding the nearest coffee stand and trying to make semi-interesting small talk with strangers.

4) One fortuitous advantage to driving was that we could stop in North Carolina to see my sister and her family. We only get a chance to see them once or twice a year. On this trip, we would be able to stay with them both on the way down and back, breaking up the drive and enabling us to spend quality time together. My niece and nephew are growing up so fast, so it’s nice to be able to see them whenever we can.

I was able to use my chair in the house, which was nice. Sophia, 5, and Connor, 3, are not quite at the age yet where they understand why I am using a chair – they think my legs are sick – and at this point, that is all they need to know. But they were fascinated by the chair. Connor, who loves anything with wheels, wanted to press all the buttons, especially the pathetic-sounding horn. It was a bonding experience, even if he did press it thousands of times.

I hope that seeing their uncle using a wheelchair makes them more conscientious and empathetic towards people with disabilities. My sister is raising them right, so I know they will be.

5) Driving from Connecticut to Florida is not for the faint of heart. It is a loooong trip, even with a stop in North Carolina. There were some stretches of the trip that were beautiful, especially in Virginia as we drove through the Blue Ridge mountains. Then there were other stretches where the only interesting scenery was watching a herd of cows take shade under a tree.

On Friday, we left my sister’s house for Florida. By that point, I was ready to be in Orlando. It felt so close, yet so far.

In South Carolina, everything seemed to hit the fan at once. My legs, already sore and stiff after days on the road, became even more painful. I started to experience throbbing in my left hip, followed by my back, then my neck. I developed a nasty tension headache to boot. I felt like the tin man in need of some oil. Or a tub of lidocaine.

To make matters worse, it began to rain. And rain. And rain. It POURED all through South Carolina, fitting weather for a road trip that wouldn’t end. The rain was so heavy that it was impossible to see more than a few yards ahead. Traffic slowed to a crawl.

At one point I looked at the radar and laughed. The storms were situated exactly on the route that we were traveling, and nowhere else. I’m serious. Look at this photo:

Our route was I-77 to 26 to 95. Look it up on a map and you’ll see.

Halfway through the deluge, we stopped at a McDonald’s in some random town off 26 to eat and use the restroom. It was Friday during Lent, so instead of scarfing down a quarter pounder, good Catholic that I am (or attempt to be), I was stuck eating a Fillet O’ Fish sandwich. It was barely edible, but I was so hungry I didn’t care.

By this point in the trip, we were at each other’s throats.

Why did you pack the dirty clothes like that?

You are spilling coffee everywhere!

Why wasn’t my peanut butter and jelly sandwich in the cooler?

Where is the cooler?

Etc., etc. We were misery personified: tired, sore, stiff, frustrated to still be on the road, and worst of all soaked.

And that’s not even the whole story.

6) This was a trip of many firsts:

First time in South Carolina.

First time in Georgia.

First time in Florida.

First time seeing palm trees.

First Fillet o’ Fish sandwich (and likely my last).

First time seeing a drug deal in person.

Yes. You read that right. While at the aforementioned McDonald’s in South Carolina, as if our day wasn’t going badly enough, we saw a drug deal take place in the men’s room.

At least, I’m 99% sure it was a drug deal. It was definitely a transaction of some sort involving an exchange of goods.

I shouldn’t even have been there in the first place. I had no intention of getting out of the van, but my parents convinced me after warning me, “You don’t know when the next rest stop is going to be.”

That line always works.

So I reluctantly got out. Dad wheeled me in (it was still raining in case you were wondering), and I did what I had to do when, before I knew it, two men walked in as I was washing my hands.

They stopped in the middle of the bathroom and faced away from the urinals, which was the first red flag. Then one of them pulled something out of his pocket and shook hands with the other guy, who had cash in his hands. Let’s just say that each of them ended up with what the other person was originally holding.

Once I realized what was happening, and not wanting to stare in that direction any longer than I had to, I washed my hands hurriedly and motioned to my dad, who was waiting for me by the door. I figured the sooner we left, the better. I motioned to him that if he opened the door, I would wheel myself out.

Of course, that’s not how it transpired. Not at all. My dad, a wonderful man but stubborn to the core, insisted on wheeling me out himself. That meant opening the door, holding it open with his back side, grabbing my chair, turning around my chair, and wheeling me out backwards.

I don’t know if you’ve been in a McDonald’s bathroom recently, but they are not what you would call spacious. Which meant, inevitably, despite my protestations, my dad took my chair, and turned me around to wheel me out backwards. The two men, still standing there completing the transaction, were now obstacles that needed to be moved to get me out.

“Excuse me,” said my dad. “We have to get through.”

Did they move? Of course not! Undeterred, my dad turned me anyways, and as I seethed in the chair, fully expecting to whack one of them in the kneecap with my footrest, I watched in horror as said footrest instead nicked the shoe of one of the transactors. The two men, oblivious before to our presence, stopped talking for a brief moment.

This is how it ends, I thought.

I don’t know if the guy I hit looked down at his shoe or stared at me, because right at that moment my dad gained the proper angle and wheeled me out of the bathroom in the nick of time. Thank God, I thought. We were on our way to the car.

And now you see why I don’t find the power chair to be such a bad thing.

Once in the car, now soaked by the unrelenting rain, I snapped.

“What the hell, dad? Do you have any idea what was going on in there?”

“No,” he said, dismissing my rage.

“You pushed me into a drug deal in progress! Why didn’t you just let me wheel myself out? That’s what I was trying to tell you. Instead, you wheeled me into them like a snow plow.”

“I had to get you out,” he said, raising his voice, agitated. “There was no other way.”

“All you had to do was open the door and I was home free!”

“Stop complaining, I need to focus on getting us out of here.”

Have I mentioned I love my dad? I probably should at this point, lest you get the wrong impression of our relationship.

Occasional disregard for my life aside, he is the best.

7) We arrived at our destination for the night – St. Augustine, Florida, around 8 pm. Although the sunset was breathtaking, we were too tired to fully appreciate it. We ordered from the Cracker Barrel down the street, ate underwhelming food and went to bed, exhausted after a long, wet, stressful day.

The next day was much better. Not having to arrive in Orlando at any particular time, and knowing that we were less than two hours away from our destination, we decided to take a scenic route, down U.S. 1 in Florida, along the Atlantic coast.

It took a little longer than if we had stayed on 95, but it was worth the detour. The sun was out. The ocean was a shade of light blue I had only seen in pictures. Palm trees swayed gently in the wind. It was gorgeous.

This was the Florida I was hoping to see.

Towards the end of our drive, we took an additional detour off Route 1 onto a side street with a view of the ocean. We drove slowly down the street, almost at a crawl, taking in the beautiful view.

Suddenly, in the distance and coming towards us, was a giant pelican, no more than maybe twenty feet off the ground.

Oh cool, a pelican, I thought innocently.

Two seconds later: Plop. Plop.

Yup, the pelican left us a gift. Good thing we weren’t in a convertible!

We drove around several miles with pelican poop on our windshield before finding a gas station and washing it off.

Gross pelican poop aside, it was a beautiful, scenic drive. We hopped on the highway and headed for Orlando.

8) The Hyatt Regency Orlando, where the conference was taking place, is massive. It was a good thing I brought my power chair because there was no way my dad could push me around a hotel of that size in a manual chair.

The hotel was clean and accessible. All the staff we encountered, from the bellhop to management, were friendly and knowledgeable about the hotel and the surrounding attractions in Orlando.

The convention level, where the conference was taking place, must have been a half mile long. Fortunately, all the sessions and meeting rooms were next to one another, but I didn’t realize and fully appreciate just how large the space was until we arrived.

It was going to be a large conference.

9) The conference kicked off Sunday night with a welcome reception. One thing I was excited about going into the conference was getting a chance to meet many people that I had only talked to by phone or email. Although I had a vague idea of what they looked like from their LinkedIn profile pictures, I still wasn’t sure what they looked like in person. Pictures lie, after all.

Normally, this is where badges would come into play. A normal person could read the person’s badge and determine if it’s someone they should talk to, long before making awkward eye contact.

Unfortunately, I had trouble reading the small print on the badges, which basically turned every “Hey, I know you!” into a “Hi there….(squints to read badge, realizes it’s not who I thought)….I hope you are enjoying the conference! Have a nice day.” This happened more than once.

I am happy to report that I did meet just about everyone I was hoping to meet in person for the first time, even if I had to squint and stare at their badge for a few seconds before confirming their identity.

All joking aside, there’s nothing quite like face-to-face communication. As a society, we need way more human interaction. People really are nicer in person, and you can pick up on visual cues you don’t get on the phone or over email.

 

And that concludes part 1. Yikes! Word count says I am over 3,000 words. 

Stay tuned for part 2 next week!