I remember when I first realized Mike was still Mike, cognitively speaking, that is. It was two days after the stroke. The amazing nurse I’ve talked about, Christine, was asking him the usual set of questions that were necessary to assess the extent of any brain injury. At this point, we were still in the danger zone, waiting for his blood pressure to be under control and for the scans to show no active bleeding.

The questions were always the same and they were every hour. They focused on his awareness of who he was, how old he was, where he was, why he was there and what year we were in.

He would sometimes need questions repeated because he was often being woken up from a deep sleep. The nurse would rub his right arm, and his chest, getting close to his ear to gently rouse him. It would take a little bit but he would eventually utter the correct replies. I was always waiting with bated breath for each answer.

It was a Sunday, It was also Christine’s last day with us. She only worked weekends. I had grown attached to her already and I was sad knowing we wouldn’t be seeing her for the next five days. She had a great way with Mike. Really, with all of her patients. I could overhear her interactions on the unit. Everyone loved her.

She was losing her voice by Sunday so it had a raspiness to it. She started right out of the gate with “What’s your name?” Mike didn’t answer right away. And she didn’t repeat the question. She just waited. Either she was conserving her voice or was just really patient. Probably a little bit of both.

I was a nervous wreck, though. In my head, I was saying, “Please, Mike, answer her.” It felt like my heart was going to come out of my chest, it was pounding so hard.

It was probably only 10 seconds, but it felt like an hour had passed. Slowly, I saw the right side of his mouth curl up into a bit of a sly grin and he said, “Freddy Krueger”.

I laughed out loud. He quietly chuckled. Christine made a joke about her voice sounding like Freddy Krueger and moved on to the next question.

It was quite obvious that Mike was very satisfied with himself as his smile lingered a while on his face.

And I thought, “There, he is”.

As I breathed a huge sigh of relief, I let the tears come. Because with that simple response, I knew that I hadn’t lost him. And the physical stuff, we would deal with.

***

Mike and I just got home after being away for 10 days. I drove us to Detroit, Michigan for me to run a half marathon and spend time with my sister, Vicki, and her husband, Scott.

Not a vacation for most people, right?

Vacation doesn’t seem to be the right word, but I wasn’t home and I wasn’t at work. So I guess that still qualifies as one.

It’s a whole long story, but originally, before the stroke, Vicki and I were looking to run the International Half Marathon which goes into Canada for part of the course. We try to do different half marathons and prefer at least one “destination” trip to see different parts of the country.

But I didn’t register in time and got shut out. So I signed up to do the Motor City Half which uses the same course and does not go into Canada. I also found some horror museums in the area that Mike and I intended on visiting.

Well, with all the craziness after the stroke, neither Mike nor I got our enhanced licenses and when I checked, Mike’s passport had expired this past June. Awful timing.

So we expedited passport processing but we still wouldn’t have it in time to fly. On top of that, Mike was changing primary physicians and needed to be cleared to fly.

So driving, it was!

It actually ended up being the better option anyway since it meant we could take a lot more things that Mike needs to be comfortable. Remarkably, Michigan is not as far as I thought. (I’m not great with geography). As luck would have it, I had training in Niagara Falls scheduled for the day we were to return from Detroit and that was halfway back on the way home. Mike could come with me for that.

Perfect!

The drive out to Michigan was about 9 hours since we couldn’t cut through Canada. It was beautiful weather and the trees were bright and colorful in the sunshine. We enjoyed music and conversation and both agreed the trip went by pretty quickly. I haven’t been on a long car ride like that in a while, so I was relieved that it didn’t feel like torture.

But as much as we both looked forward to getting away and felt ready to deal with all of the inconveniences and discomforts of being away from home with Mike needing certain accommodations that we couldn’t be assured we’d receive, it was more exhausting and miserable than we anticipated.

None of the hotels we stayed in had handicapped-accessible rooms available. I kind of assumed all hotel rooms had grab bars in the bathroom and shower but they don’t. We made things work but Mike did not feel safe. He was pretty much confined to the room and when we went outside, he had no confidence so he stayed in the wheelchair.

Yet, another eye-opening experience for how inaccessible most things are when you are handicapped. Everything just feels so overwhelming and challenging that it’s easier not to do anything than to stress and worry about safely navigating an unknown situation.

For example, we went to a hockey game in Detroit. The parking garage to the hockey arena had tons of handicapped-accessible spots on each level right near the elevator. Great! But the door to get to the elevator had no automatic button to help open that door.

So if you’re in a wheelchair and alone, you are out of luck, or at the mercy of a kind stranger to appear and open the door for you.

(Writer’s Note: On each of the six levels of this garage, all of the handicapped parking spots were taken. There are a lot of handicapped people attending hockey games, apparently. Yet, every door needed to be manually opened.)

We encountered numerous instances of that exact situation in Detroit as well as in Niagara Falls. Rest areas along the Thruway also had handicapped-accessible bathrooms with no automatic doors.

We tried getting close to see the Falls, but the American side was not handicapped-friendly at all. It was very disheartening and frustrating.

Mike and I both agreed that we need to help advocate and point all of these things out. We have been keeping a list and intend on writing, e-mailing and calling whoever we can to bring these issues to light.

We also agreed we won’t be traveling again until he’s more mobile and independent. He needs to build up his strength. And his confidence. And we both just aren’t able to enjoy ourselves.

***

In the early days after the stroke, when his friends were getting ready to see him for the first time, I wanted to soften the blow by preparing them for what to expect.

Because it is quite a blow.

To see him in a wheelchair or slowly walking with a hemi walker or cane.

His eyes not always making direct contact with yours because he can’t see you there in front of him or because he’s focusing hard on where he’s going so he doesn’t lose his balance and fall.

This once bright-eyed, animated, wide-grinned man now muted somewhat with an uneven smile that accentuates his facial droop (which is lessening).

His voice at times sounding strained and higher, almost tired and elderly.

The thrill-seeking demeanor now replaced with a more cautious and weary approach. Just stepping off the curb causes him to hesitate and find his nerve.

I tell everyone, “Mike is still Mike. He’s the same, but different”.

Because that’s the best description I can give. And those that knew Mike before the stroke are the only ones that can understand what I mean.

But the differences are all superficial. They haven’t diminished his generous heart, his kind soul, his wicked sense of humor, or his fierce loyalty to those he loves.

And for me…

Well, this experience has impacted me in ways I can’t describe or even clearly identify.

All I can say is I am still the same. But different.