In 2015, Brian and I loaded up our van and headed to Chicago to attend Fare Thee Well at Soldier Field. Three nights of celebrating 50 years of the Grateful Dead. What an adventure it was! It’s so hard to believe it’s been five years. What a long, strange trip it was. It wasn’t easy but more than worth it for the experience and the memories. This was posted on an old website and I thought it was time to bring it over here. Enjoy!
*(Originally posted 7/15/15)
Arrangements set. Bags packed. Lists checked. Tickets in hand. It was time! Months of planning, preparation, and anticipation. It was finally time to head to Chicago to see Grateful Dead. We loaded the van on Thursday morning, buckled up and hit the road. Whoo hoo! It wasn’t long before we were in Chattanooga. As we hit 24 West it began to rain. It continued through Tennessee and on into Kentucky and Indiana. For several hours it rained so hard we were doing 30 mph. As if we weren’t slow enough! That first day’s drive was uneventful and either there was nothing to see or we couldn’t see it on account of the rain. Several cars had skidded off the highway along our route. Slow and steady wins the race, they say. That may be, but it’s just so boring. Best to play it safe, of course.
It’s hard to hear Brian in the van since his voice is so weak and the speech so slurred. If he tries to talk to me it becomes a repetitive game of him saying something, me not catching it, him repeating it, me not getting it again, and him trying again until we both get frustrated. So he’s learned it’s best to use the robot voice. He used his tobii to ‘speak’ on the road and it made things so much easier as far as communication goes.
At this point it’s still a novelty and Brian likes to find funny things to say with the tobii. We weren’t even out of the neighborhood when he’d come up with, “I’m hungry. I’ve got to pee. Are we there yet?” We both cracked up. Throughout our drive Brian would find different ways to keep us entertained by having tobii say certain things. The more he used the robot voice, the more Brian learned how important phonetics are. At one point he’d typed out “I love scotch. Scotchy, scotch, scotch.” (From the movie “Anchorman”). It came out sounding like skote-ch. After some finagling, Brian figured out how to spell it so that it came out sounding right. It’s funny to hear it curse too. Robot cursing is just funny. Brian really kept us cracking up with that thing. Might as well find humor in it, at least.
I’m amazed at Brian’s patience with tobii. I’d see something on the road and comment about it to him. Several minutes later Brian would respond to what I’d said. It takes him a few minutes to type out a couple of short sentences, slowly clicking on one letter at a time with his eyes. It becomes even more of a challenge in a moving van. With ALS it’s hard to really have a conversation anymore but at least we have a way to communicate while on the road, and we are both so grateful for that. He’d type and type and type and I’d check the mirror to watch and see if he was done, anticipating what he might say. He kept us entertained for sure.
My goal was to get us to Indianapolis but as we pulled into Louisville around 8:00 Brian said twelve hours was enough. He was right so we stopped and checked into a cheap little motel.
We woke up early and started getting ready to hit the road again. Places like that say they have “accessible rooms” and for most people in a manual wheelchair it probably works just fine, but with the ol’ Quantum Edge you need some room to move around and the way the room was set up made getting into the bathroom quite the challenge. As we tried to finagle the chair in there we started getting snippy with each other and the whole thing was rough. Brian has trouble taking even the smallest step first thing in the morning. At home he usually gets into his chair and has his coffee and wakes up before he asks his legs to work for him. Trying to ‘walk’ first thing in the morning is so very hard. Add to it the tiny bathroom to maneuver the chair in and the fact that we’ve not had our coffee yet and you’ve got a recipe for grumpiness! Words were exchanged and it made for a rough morning. Just because we’re in our situation doesn’t mean we don’t have those little annoying husband/wife arguments where you’re not really mad at each other you’re just frustrated and take it out on each other. Thankfully they don’t last very long. (Twenty years together helps you evolve when it comes to arguments.)
With the van packed back up and Brian loaded in we set out on the road again. About an hour later, with both of us still a little irritated we stopped at the Indiana Welcome Center. I ran in to see if they had a family restroom just so we could know for future reference, but no luck. I walked out of the back door of the building and came upon a bee happily crawling around a flower so I stopped and took a little video of him and just enjoyed the fresh air and flowers that were there. I was feeling better already.
I got in and started up the van to head out. As I took one last look around I spotted a tall, lanky guy in a grey tshirt with long grey hair and beard. He saw the van, pointed at me, put his arm way up in the air, stood on his tip toes and gave a thumbs up while smiling SO big at me. I smiled wide, pointed back and waved all crazy like. Love that moment! Don’t know the guy but a circle of blue and red with a lighting bolt on the van was all he needed to recognize we had a common bond and where we were both headed. I laughed and Brian asked what was so funny. I told him about the hippie dude as we got back on the highway. We both smiled. As we moved along It rained here and there but nothing like the day before. More and more people would pull up beside us, honk to get our attention, smile and wave like crazy. It was fun!
My research had shown that the rest areas north of TN didn’t have family restrooms. That sucks but we also learned we could have luck at bigger stores (Target, etc.), though it would be hard to map them out as there are so many and who knows when you’ll need them. As we neared Chicago we tried a Super Wal Mart and yes, score! Their family restroom was all the way in the back of the store, so we rolled back and as we get there we saw an employee sweeping the floor. An older lady, her gruff voice let us know that ‘someone is in there’ and went back to her cleaning. We waited, waited, waited. Several people (most of whom were employees) walked right up to the door and gave it a jiggle, then proceeded to their gender’s bathroom. Um hello? Guy in a giant wheelchair over here, waiting for that! Geez. Finally we heard a flush and a few moments later the door opened and here comes….the store’s security guard, stowing his newspaper under his arm. He gave us an unapologetic look like ‘Yep, just killed it in there, enjoy being next.’ Great, thanks….
The good thing is that it was so big in there and easy to maneuver. Whew! After that we picked up a few things and loaded back up. We hit some construction outside the city but got in pretty quickly and even passed by Soldier Field. The traffic really wasn’t that bad even though there was a Dead show there that night. As we drove by we noticed that the ushers at the stadium were wearing tie dye shirts. ha! Funny. We made it to our hotel and luckily we saw our friends Vic, Shannon and Dave in front of the hotel just as we pulled up. Without hesitation they got an assembly line going and helped me unload the van. Grateful for friends!
We settled in for a few minutes, got some things unpacked and just relaxed for a bit. We made it! A bit later we met our friends at a restaurant just down the street. It was nice to just sit back, relax and get in some good conversation. It’s so very rare that we ever eat out anymore. This felt normal. For me at least. I hate that Brian can mostly just sit there but he did have a beer and seemed to enjoy the conversation. It wasn’t too loud in there and he could get a word in here and there. We were right across the street from Hancock Tower and decided why not go up in it so we headed over and waited in line for a bit to get to the top. After 30 minutes in a queue line that included pictures and video about Chicago history we made it to the elevator. No matter how big they are it always seems so cramped in one with the ol’ Quantum Edge. We have to reverse and go into an elevator backward. It’s usually so smooth getting into one. Then inevitably when trying to get out I end up BANGING the door on the way out. And of course that usually happens when the elevator is full. It’s so embarrassing but I also just kind of laugh every time. That chair is so heavy and when it first gets going it takes a second until the wheels flip around, then whoosh! The thing jets forward and hits the wall/door so hard. Tee hee. Ah well, whatcha gonna do!?
That’s okay though, we made it to the top! It was so cool! Being on the 95th floor of a building on a holiday weekend turned out to be worth the wait. We could see fireworks all over the city below us. They were everywhere and looked so small from up there. Such a neat perspective. We all just milled about and checked out the city from up there. Thanks for dinner and the tower Dave!
Saturday we got up had some coffee and just chilled for a bit. We knew we needed to rest up for the show. In the past we would have gone exploring, checking out the city, taking pictures and trying a local brew. Now we know we need to take it easy before an evening out. So we relaxed and just hung out in our room, talking about the songs we want to hear at the show, the best way to get there, and ensure we’ve got everything we’ll need for the night. I tried to ensure our backpack had all our essentials. That morning I got an email from the people at the parking company I’d been in touch with for a few months. While they weren’t able to secure us any special parking, they did stay in touch with us through several emails. That day they let me know that one of the lots had not filled up the day before and they were confident we’d get parking close to Soldier Field if we’d arrive a bit early. They were SO nice each time we corresponded and we want to give a shout out to Pavle and Kari from SP+. They proved that customer service isn’t dead! This event was huge and though they were super busy they took the time to stay in touch and even email us on the day of the show. Big thanks to them!
We scooped up Shannon around 3:30 and headed out. It didn’t take us very long to get to the venue and we even ended up getting a decent parking space. We unloaded and set off. Once out of the lot and onto the ‘campus’ there they were. Hippies! And by hippies I don’t just mean dreadlocks and tie dyes but more of just a vast variety of open minded, laid back, cool, loving people. It’s somewhat hard to describe. There are so many people and it’s that feeling of being herded to some extent, where the crowd is so dense trying to all mill about at once in a small area and you’re feet are just taking these tiny steps. Navigating the ol’ Quantum Edge through that is quite interesting! It’s like an obstacle course and it takes practice. We’ve come such a long way from Music Midtown. (No toes were rolled over in the making of this story!) People are either super accommodating or oblivious to us. We just strolled, taking in the sights and sounds. We found a grassy spot in a vendor section, popped a squat and people watched for a bit. There was a guy in an Uncle Sam suit, someone dressed up as a Dancing Bear, and yes dreadlocks and a sea of tie dye, and good vibes all around. Some guy came up and gave a pin to Brian. It had the steal your face logo with a “50″ in the middle. A guy asked Shannon to take a picture of him and his wife. His name was Steve and after he returned the favor and took our picture he asked our names. When I told him mine he told us that his first girlfriend’s name was Jennifer and he had a special place in his heart for that name. We all hugged each other and went our separate ways.
After some time we got up to head into the venue. It was slow going at first and hard to figure out where we were supposed to go. I spotted an usher pushing someone in a wheelchair so I started following them. He was going so fast! We got to a gate and they opened up a section to let us wheelchair folks in. Sweet! The line behind us was quite long and moving very slowly. We’ll take the perks where we can. Soldier Field. We were in!!!
After a few pics we started up the ramp to the next level. We asked the usher at the top where the family restroom was. I knew this place had 14 of them so there had to be one somewhere in our area. He got this confused look and just stared at Shannon. He looked left, he looked right. Um, he’s not sure but thinks perhaps on the level above us and points to an elevator. We walked over to it and waited for a bit and it’s just doesn’t come. I looked up and noticed the ramp to the next level up isn’t that bad so off we went. We rolled up a couple of inclines and there we were. We asked another usher which way. Same confused look, then he pointed left. “That way,” he said with a question mark at the end of his statement. *sigh* Okay, we set off again.
I saw the sign and cut across the crowd to a door on our right with an usher standing next to it. Cool, she’s making sure it’s used only by those who really need it. I went to turn the door handle and it was locked. Wait, let me just try this again. Nope, locked. I asked the usher if someone was in there. She was maybe 20 years old. Hat and sunglasses, about 5 feet tall. She told us no, that it was locked. I asked if she had the key, backing up to get out of her way so she could unlock it. She tells me no. And that’s it. Just, no. I told her I needed that restroom in order to help Brian. She didn’t flinch and continued to simply stand there. She told me it’s locked and there are bathrooms across the way. I told her that doesn’t work because we needed to go together and I have to help him. She just stood there. Really. Just. stood. there. Like a robot. I asked her if her Supervisor had a key. She mumbled something and I pointed to my ear because it was SO loud in there and she didn’t repeat herself, just continued to simply stand there. She’d made not one move to even attempt to help us, direct us somewhere else, help us solve our problem. We all just stood there trying to wrap our heads around the situation. I kept trying to make her understand yet there was no response. I was trying to remain calm and it was becoming increasingly harder to do. What is wrong with this lady?! I looked at a guy next to us who had been watching the whole thing. I asked him, “Am I taking crazy pills? Have I lost my mind?” He just looked at me in disbelief and said no, this was ridiculous. She really just didn’t care AT ALL.
We decided to roll on and try to find help, navigating through such a crazy crowd of people. Another usher who seemed confused but this one actually used his walkie talkie to reach out to someone asking that they come and unlock the bathroom. He said someone would be up soon. Back we rolled to where we were, cool girl still standing by that door, doing what exactly we still don’t know. We waited and waited and waited. No one came. Again we moved on to find another usher. Shannon got to him first and let him know our predicament. I attempted to tell him that we’d already had someone called on the walkie talkie. He didn’t let me finish, points his finger in my face and literally yells at me that he was trying to help me, and to “calm down ma’am.” Um, did this mother effer just put his finger in my face? Though I was getting mad as hell, I was being very calm all things considered, and when he pointed and yelled my blood really began to boil.
Deep breath, count to ten. He told us that someone would be up soon to unlock it. Seriously? Okay, fine. We rolled back to the same place we’d been attempting to get into for half an hour now. I’m getting antsy because it’s after 7:00 now and if we miss the opening I might freak out! All the sudden I hear someone yell “Jennifer!” as he walked by. Lo and behold it was Steve from earlier. We smiled at each other as he walked by. A little levity was nice. Just after that a pretty girl with long flowing hair placed a rose in Brian’s lap and gave him a smile. It was very sweet. As we continued waiting I saw the first person who had tried to really help us. I made eye contact with him. He remembered us! He saw my face and stopped in his tracks. “Really? Not yet?” he asked. I just shook my head and my eyes got a little misty. He looked around, thought about it for a minute and said he could get us to the restroom but it would have to be one of the regular ones. I looked at Brian to gauge his reaction and he reluctantly gave me the nod. “Fine,” he said.
Immediately I became nervous. There had been a time or two at a rest area where there was no family restroom that I asked Brian if he just wanted me to take him into the women’s room with me and just go to the handicapped stall. He always said no. He would rather hold it than do that. So when this guy said he’d take us to the regular rest room I knew Brian wasn’t going to be happy. Before I realized where we’d even ended up, the man had led us through the crowd and up to the men’s room door. I stopped and wasn’t sure about it but he just bellowed out to make way and the three of us went in. It was packed of course, trough to the left with so many guys lined up. As we crept through there, I asked the man his name. Derek. I thanked him for his help and as he yelled for everyone to clear the way the guys all took a step forward and a path was made for us. We rolled for what seemed like forever until we got to the stalls. The handicapped stall was in use. It seemed to take forever for the guy to finish but we finally heard a flush and he came out. Derek held the stall door open for us. The door opened into the stall. For about 5 minutes we tried to finagle the ol’ Quantum Edge into that stall, all eyes on us. It just was. not. going. Derek looked at me with desperate eyes and said, “I just feel so bad.” We tried a couple more times and I thought about giving up but wasn’t ready to quit just yet. (Quick side note – If any of you work in construction and are tasked with installing a handicapped stall, please be sure the door opens out!)
Oh! A light bulb went off in my head. I pulled out a blanket from beside Brian and asked Derek if he would hold it up for us. And he gladly did. For like 6 minutes, while we transferred and made it happen. It was a hundred freakin’ degrees in there and we’d been so stressed. Brian and I were both sweating. But we did it. At one point I asked Derek if he was hanging in there and he said he was. He was so cool! We inched our way out of there and once we got out I felt such relief. I’m sure Brian did too! I gave Derek a hug and told him he was our hero that day. Shannon snapped a picture of us with him. What an amazing guy!
Luckily the band hadn’t started yet. We settled into the accessible area and tried to calm ourselves down after THAT whole thing. The people around us were accommodating and so cool already. All right, it’s all good….it’s going to be okay. Nothing left to do but smile, smile, smile…….
After a few minutes, there they were. The Dead. !!!!!!!!!! The stadium had quickly filled and as soon as they started playing the entire crowd started to smile and sway, dancing immediately. Shakedown Street to open! YES! I smiled and looked at Brian who was smiling too. It was going to be a good night!
The stage was absolutely amazing, with these sharp images/graphics on each side, and amazing lights of course. Just huge…and speakers all throughout the stadium. Not only was the sound LOUD but it was also clear and sharp. Everyone was so happy and just loving it, all together. Could it be that we were actually watching the core four live, right here, right now? Yep, it was true! I gave Shannon a huge hug. I was so happy to be there with her. She’s been my concert buddy for so long and not only have we enjoyed seeing many shows together we’ve had some really great adventures together, including a cross country road trip with us a few years ago. She gave up her Sunday night to go to the show with us and we really appreciate that. And other than Brian she was the person I’d wanted to share this night with the most. A love for Grateful Dead is one of those things we realized we had in common from the start of our friendship.
So many great songs we got to hear! Friend of the Devll, Little Red Rooster, Deal….all in the first set! I went to the concession stand for some water. Another girl in line and I danced while the music played and we waited for the line to move. It was maybe 8:30 and after making it to the counter after an entire song they told me they were out of water. Wait, what?! Out of water? I mean, I guess it’s better than being out of beer, but I’m confused. They’ve had months to prepare for this show. They knew that SEVENTY THOUSAND people would be there for three nights in a row, to see the most amazing jam band ever and they are out of water. Oy! Fine. I asked the guy for some from the tap. He really looked at me as though I was crazy. Yes, water. I gave him a ‘go ahead’ wave of my hand and nodded my head while he turned on the faucet. He just stared at me while he filled the cups. He told me he’d have to charge me as if it were a soda. It’s tap water. Good grief. Fine. The guy next to me had witnessed the whole thing and as I turned to go he looked at me and said “ridiculous.” Right?!
Got back to our seats and we chilled while the band took a break. We relaxed and got to know our neighbors a bit more. Matt was our tie dyed friend on the right who was from Chicago and was there with some friends. As the night went on Matt told us which songs he hoped to hear next and though he didn’t get them in the order he predicted, those songs were played for him. We all danced from the start and stood as long as we could until finally we got our chairs and took a short break during drums. The images on the screens were amazing and it was mesmerizing just to watch and take it all in. Stella Blue got me a little teary eyed, then I was back up and boogying for One More Saturday Night. So awesome!! Always fun when the moment is captured at a live show like that. It really was Saturday. One of the best ones we’ve had in awhile. What a night!
It was an unforgettable show. The set. The lights. The crowd. The songs. The feeling in that place that night. Love was truly all around and I don’t see how anyone who was there could deny it. It was truly something special. Magic. Fifty years. Half a century! There’s some perspective for ya. Throughout the night I’d check on Brian to be sure he was comfortable or see if he needed anything. So many times it was just us, locking eyes and smiling, knowing we were both content in those moments.
It was so cool that we got to be there on the 4th of July. We used to have an annual party for the 4th, watching our friends set off fireworks and annoying the sh*t out of our neighbors. A few years ago Brian and I got to see fireworks at Mount Rushmore. That was pretty cool, and had been our best 4th ever until now. The night already had it’s own theme for the holiday, and there was an American feel with the show for sure. The last song was US Blues. On the big screens was a shot of the Empire State Building which was lit up in red, white and blue and as we kept watching we all realized it was a live shot and it was in sync with the music and there were even images of the band projected on the building. SO COOL! The crowd smiled and pointed as the realization hit them. After that the lights went off and the band was done. All of the sudden Stars and Stripes Forever came blaring through the speakers while fireworks boomed overhead. Woah. Everyone was just smiling and laughing and enjoying that moment together. Just amazing.
As long as they played for us (7:30 to midnight with a short break), it was over all too quickly. It felt kind of stunning in a way. That was it. We waited for the crowd to thin out then started to make our way back to the parking lot. On our way out we heard a guy yell, “Hey, are you the guys with the ALS van?” We yelled back that we were and he came running over. His name escapes us both, something with a K perhaps? (Grr, I’m awful with names.) He told us that his mom had ALS and that he was a volunteer in Wisconsin. He was so nice and he talked to Brian for a minute. He had Yoda ears on and it just cracked me up. He was so nice and it was cool to meet him like that. It ended up being easy to get out of the parking lot and back onto the main road. We got in around 2:30 and just reveled in the experience we’d just had. Such a great show and a great night. We did it! We made it and Brian was able to be there and enjoy the show. Grateful for so many blessings.
Though we’d stayed up so late we both awoke early. I couldn’t help feeling a little sad. I knew there was one more night of awesomeness and I wanted to be there. I finally said it out loud, though of course Brian already knew what I was feeling. He asked why I couldn’t just be happy that we’d been to the show the night before? And I was but I just wanted more. I’d known both that morning and the night before that it was the last show for us. And it was such a good one. I was so happy about that and tried not to be sad about not having a ticket for Sunday night. We talked about the awesome moments from the night before and I smiled, grateful we were even there at all, as it was so lucky we all got tickets in the first place. I accepted again what was and went back to that happy place the previous night’s show had given me in the first place. So damn lucky.
We stretched and chatted for a bit and I went and got coffee. It took us a while to really get going. We decided to have brunch at a cafe a few blocks away. The map said a 20 minute walk which seemed like a totally do-able thing at the time. Um, yeah, well…I mean, we made it but it was a longer haul than expected. Sidewalks are great and it’s great that there are ramps into the street on each side but there are also these sections of big bumps in the concrete. Those ramps and bumps jar Brian all around each time we cross a street. I tried to slow down a bit but it’s either keep a rapid pace or crawl slow as a snail. As usual Brian was a champ and didn’t complain once!
Brunch was so nice. The sun was shining, the day was just beginning and we were exploring a city we’d not been to before. We told our friends Heather and Eric about the show the night before and assured them (as if they didn’t know) that they were going to have a great time that night. They are huge Phish fans. I mean, come on. Is this a dream come true for a Phish fan/Deadhead or what? I was so excited for them!
After brunch we went back to the hotel and met up with Dave and Shannon (another one) for a beer. As we sat in the lobby of the hotel we chatted and got in some more people watching. I can’t help but laugh as I think about Shannon asking the other Shannon if she liked Morrissey. See, the other Shannon is British and I think Shannon thought she might find an ally there. She’d been telling all of us about his show she’d just been to and I know she enjoyed it so much and wanted to share it with someone. Each of us when asked if we like Morrissey all politely said no and she got a little bummed each time. Cracks me up! You’re fans are out there somewhere, Shannon. You’ll find them eventually! There was just such a relaxed feeling everywhere. Grateful for lazy Sunday afternoons with friends.
After that Brian and I took a leisurely stroll outside. It was so nice out there. We just went a few blocks down the street, to the water, then back toward the hotel. There were some lovely parks as well as some cool buildings in that area. We also found ourselves in a Hershey Chocolate shop and looked around, spotting a giant anniversary chocolate bar. Five pounds, I think. Guess how much? Like twenty bucks, right?! It’s a chocolate bar. Nope. Try eighty dollars. Yep. Eighty frickin’ dollars! Sure. Everything was crazy expensive in that store. They did have a case with cookies and brownies and such in it that were much more affordable. We got this Reese’s peanut butter cookie sandwich thing for Brian and a York Peppermint Patty cupcake for me. Snacks for later. Yum! We strolled back to our room, taking pictures as the sun set, and we enjoyed just being.
After a little nap we met Shannon and Vic for dinner a few blocks away. We had a lovely meal on the patio, including a cool breeze and a quiet neighborhood. The city seemed so laid back. I’m not sure if it was extra quiet due to the holiday or what, but it just seems like a cool city and one that’s very welcoming.
The decision to have dessert at the Cheesecake Factory was made by Shannon and I, as we both clearly had forgotten about the tiny elevator there that we used to get up to the Hancock Tower. Back to it we went, though. We needed something sweet! Again with the tiny elevator. At some point I remember almost pinning Vic into a corner with the chair. Whoa! I’m telling you, that Quantum Edge just goes crazy sometimes! Sorry Vic! ; ) We were seated and soon decided which of the 50 varieties of cheesecake we were going to have. Next to us was a table of about 20 teenage girls who were celebrating one of their own’s birthday. Holy crap were they loud! Can someone please explain why they seat you next to a full table when the remainder of the restaurant is practically empty? So annoying. Oh well, nothing some caramel cheesecake can’t fix. Mmm, cheesecake and a latte. Life is good. Thank you Vic and Shannon for dessert! And for being all around good people!! Grateful for Sunday evenings with friends.
Monday morning we awoke early again and I leisurely packed our stuff back up. It was an easy, slow morning. We hit the road around 9 am and made a quick stop at the Field Museum. They’d had a Grateful Dead exhibit there and though we didn’t make it to that, I wanted to see the front because they had these giant banners that said “Everything is Dead” on them and had dinosaurs with rose crowns on their heads. There was one banner left and they were taking it down as we pulled up. I snapped a quick pic just before it fell. That was that and we really hit the road home.
A few tolls later we were really moving along, headed toward Gary, IN. The sun shone, the traffic was easy, and people still smiled and waved as they passed by and saw the van. We made good time through Indiana and soon enough we found ourselves back in KY. We continued to check rest areas to see if they had family restrooms yet none panned out. We like to check and see if any online resources could be updated. Sometimes they renovate those areas and jazz them up a bit. Oh well….maybe next trip there will be some.
We hit Tennessee as the sun began to set. I thought well hell, since we were already there we could certainly make it home. No problem, right? We kept on truckin’. I was thinking we had to be close to Chattanooga. From there it’s only about 3 hours home. Piece of cake.
I saw a sign that showed Chattanooga being 176 miles. Oh geez, it’s 3 hours there and 3 more on top on that. Deep breath. That’s cool. We got this. I wanted to keep going no matter what Brian might say so I was afraid to ask him for fear that he’d say he wanted to stop But I did ask and he said in a tired but solid voice that we should keep going. And we did. All the way home.
We did stop at a big gas station in some strange town. We filled up the van then pulled over and pulled out the goody bag from the Hershey place. Know those times when you thank yourself for doing something that ended up so well, even though you didn’t plan it? This was one of those times. That cookie and frosting on the cupcake were so good and gave us a sugar rush to keep us going! On and on we went. Thankfully it wasn’t raining. We drove and drove through the night. Brian was such a trooper and stayed awake with me though I know he just wanted to lay back and fall asleep.
The promise of our own bed was just a few miles away. As the mileage numbers for home decreased it got so quiet in the van. Just driving. Let’s get there. Finally, we were in Atlanta and before too long we were pulling off the exit to our neighborhood. Around 3:40 we pulled up our steep driveway. As I shut off the engine and slid down out of the driver’s seat I noticed how very quiet our neighborhood was. The humidity was thick, typical for a Southern July night. We unloaded a few things and I quickly called to our cats. Daisy came running right to us, so happy we were home. The other one acts like she doesn’t care that we’re home and won’t come and see us, no matter how much I whistle and call her. (This is Chloe’s typical MO and she’ll only show herself at least a few hours later.). Yep. We were HOME. Aaaah! It was 4:20 when we actually hopped into bed and turned off the lights.
It’s a week later and I’m still on cloud nine. It was basically a pilgrimage we had. An adventure well worth it’s effort. Overall the drive wasn’t too bad and often really relaxing. We got to hang out with our friends in a cool new place. The show was indescribably amazing, and people everywhere were behaving in such a cool, loving way. It was a feeling of camaraderie that you don’t always get day to day. It honestly restored some faith in humanity. For the most part people are good and it can be easy to forget that in our busy fast paced lives, where we often take each other for granted.
Even with ALS Brian was able to be there and enjoy the show. It wasn’t easy and we had some defeating, depressing moments but we pushed through and remained grateful we live in a modern age where we are able to get Brian there and that he could enjoy it with everyone else. It was also exhausting. Executing transfers for Brian and navigating the chair in crowded places are physically demanding. In addition my brain is always trying to keep up with it all, anticipating potential roadblocks, counting up Brian’s calories in my head or making sure he’s comfortable. I feel like we’re both still recovering but we did it! I wouldn’t change a thing and we keep learning as we go and we are absolutely grateful for so many things. Brian continues to be a trooper and I admire him so much every day. He rarely complains and he faces each day and every challenge with humility, patience and grace. He’s amazing and I learn from him all the time.
Fare thee well and thanks for coming along on this journey and for reading this far! Please share our story on your social media, through email or however else you can. We like to share our experiences and we hope to inspire others who are dealing with ALS or any other challenge in their life. Never give up hope, no matter the situation. #evenwithals
Peace and Love,
Jen and Brian