Gary’s first ride in a Cadillac

It was his 36th birthday. It was 2 weeks ago. Almost 6 months after he discontinued medication due to a physician/authorization issue. 4 weeks after he had started physical therapy. 9 years, TO THE DAY, after his diagnosis (yes, he was diagnosed on his bday but that’s another blog post). We went to see Rodrigo y Gabriela at Wolftrap. We’d been looking forward to this for months. Leading up to the concert – we went through all the normal thoughts and emotions that one does when you live with/or are a spouse to someone living with a chronic health condition. We got excited that our besties decided to come with us. Two more able-bodied humans to rush in if Gary’s MS decided to be an A-hole (which it so frequently does at ALL THE FUN EVENTS). We bought seats in the pavilion instead of the lawn so that we’d be in the shade and Gary would have a chair instead of having to get up and down from the ground. Gary had begun using his cane more frequently and was comfortable with it which would support his mobility on our outing. We were prepping and planning appropriately. Something we spend far too much time doing these days. I ran through scenarios in my head the whole week prior and worked on best and worst case scenarios. I always hope for the best and don’t even think about the worst because that just makes me anxious. And Anxious Sadie turns into an A-hole, just like MS. We don’t need two of those on Southview. Then the day came. We had a few cocktails before we got to the venue, then tailgated a bit before the show. Gary was conscious about his consumption (although I was not) and was feeling pretty OK. When we realized the walk to the gate was longer than we thought, Mike scored us a ride on the golfcart-type shuttle. Score! We saved some steps (the key to any successful outing with MS). As we entered the venue, the temperature was a perfect 67 degrees with no humidity and no warm sunshine. (the second key to a successful outing with MS). Hail to the MS Gods. Things were going as PLANNED. I was in heaven. Then…well…We opted out of the seats we had paid for because they were down several stairs and would be far from the bathrooms. Stairs and Gary’s legs don’t get along (I used to refuse to walk down stairs in front of him for fear he’d plow me down in a fall). Besides, those seats meant way more steps to the bathroom and that bugger MS definitely makes a 36 year old man feel like a 9mo pregnant woman when he’s gotta pee. Some of us know that feeling and have even pee’d ourselves a little bit. Yeah, that. And one of those crazy things about our body and MS is – when Gary has to pee, it makes it even harder for him to walk. Nobody knows why, but nobody knows why you get MS. So, enough about urine… Our goals were the fewest steps possible for Gary for the remainder of the evening. Minor setback that we weren’t going to our seats, but we had a solution. We had a cooler so Gary could still have a seat on the lawn without having to get all the way to the ground! So – best laid plans are being changed but we are still winning the MS game tonight. The concert was incredible. Two hours of amazing guitar playing and adorable musicians in a beautiful venue. I danced and didn’t even sweat the weather was so perfect. As the production begins to wrap up, Gary makes a trip to the bathroom and I notice his cane is no longer doing it’s job. Gary is swerving all over the patio like a drunk driver and it hits me, “Hello, you dirty, rotten beast of a disease. You just had to show up, didn’t ya?” Disclaimer – alcohol was consumed most of the night but this was truly a combination of a nice buzz with a chronic condition that is purely intended to fuck with you. Gary falls down twice before the end of the show. After their last song, people funnel out and Gary asks if we can hang for a few minutes so we have a clear path out and can get a shuttle back down the hill to the car. The security eventually come over and politely inform us it’s time to get moving. They even offer a wheelchair when we tell them why we’re waiting but Gary politely declines. The man took 2 years to go out of the house with his cane. And even then it’s when we went on vacation where no one knew us. Embracing those things are hard. I won’t pretend to understand. But, either way, the answer was no. My anxiety is increasing because I have no idea how Gary is going to get out of the gate to the shuttle. Then my mind starts looping and I think about the ride home and how we’re going to have to stop so he can use the bathroom and how when we get home I may have to help him get in the house….oh the mind of a caregiver. So – finally, we get up and start moving. We’re walking, one step, two steps… and Gary is DOWN. And, if you’ve never seen Gary fall, it’s almost like he faints. He may trip over his own toes, but you can tell his body goes limp a bit and he falls. His arms don’t go down to catch him, he just falls. It’s painful to watch. In rush the EMT’s who think this drunk guy will need some help. Up goes my heart rate as I cope with the fact that my husband can’t walk and now everyone is looking at us. Thankfully, the EMTs joke about how this is the most action they’ve had all night. Gary gets up and Mike tries to help him walk. It’s clear within seconds that while well-intended, that’s not going to work. The cane (who we have yet to name) has already relinquished it’s duties for the evening and I know Gary will be his GD stubborn self. Just then, a delightful young man walks up with two wheelchairs and says “hey, sir, if it would make you more comfortable I’ve got a ride here for you. You’ve got two options, this cadillac here or this jalopy.” And just like that, we all felt better. He normalized our need. Brought humor to the worry. Made our distress seem so silly. Gary laughs and agrees to a ride. That was the first time Gary took a ride in a cadillac. And a huge step for us in accepting the help. Asking for it is so hard. Accepting it is so hard. Having to explain it is so hard. It’s tiresome. But something about that wheelchair at Wolftrap, that Cadillac transport…felt normal and nice. Like not such a big deal after the 10 minutes of stress that preceded it. And this is our life… Welcome back to our blog.