Mobility, Accessibility, and Travel

Well, because everything was gradual, I've had to make just constant adjustments-- my husband has, my kids have-- of we used to do that, and now we don't. But it was so gradual that, OK, so BB-- my nickname is BB or Bianco-- stops driving but can still be a passenger in anybody's car. And then gradually, to even be a passenger in the car, I couldn't get on the passenger side, my left leg into the car on my own. So, either a friend of mine-- and they're always reluctant because they're afraid they’re going to hurt you-- I'd be standing there, and they'd have to lift my left leg to get me just from the sidewalk into their car.  And then my right leg was OK for a while, for years. So, I could get my right leg in. And I could shut the door myself. But it's those things that are gradual. So finally, there's no way, really, to get into the car period. Because I can't even really stand securely on my right leg anymore. So, I can't get into the passenger side of the car. But it's all so gradual.  But yeah, it's just like things being chipped away.

But I literally remember my last step, where after that it was no more walking. I was just sitting in my little stair lift seat, which I would often just spend time in at the bottom of the stairs. I'd read. There is a little bathroom right near the bottom of the stairlift. So, I was able to kind of lurch in there myself. And I'd push the stairlift button that would get me up a few inches to whatever height I wanted, then I'd step down, grab a table, and sort of lurch into the bathroom. It was bizarre but it worked.  And one night I just couldn't do that anymore. I could not make my legs move to do that. And I sat sort of right back down in the stairlift. And that was kind of the last step I ever took.

Like with weddings and stuff coming up. And there's no way I can make it. It's like, you guys go. I'll send the card. It'll be fine. And it's like, if I can wear steel toes, you know which would give me a little bit of balance-- I don't know. But then it's like, OK. Where am I? Where's the bathroom because then I have those issues. It's like, how quickly can I get to the bathroom? I mean I'm always thinking ahead that way, you know like OK. If I'm here, accident happens. No big deal. But if I'm somewhere where I don't have the control or don't know the area, that I am not able to deal with very well.  

INTERVIEWER: And are those sort of issues around the bathroom MS related?

I definitely don't want someone wheeling me around in a wheelchair all the time. And then how do you get from the wheelchair to the toilet kind of things? I don't want to deal with any of that. It's like my way of coping is just avoiding it. And some things you can't avoid, but you know I avoid any situation where I think I'm going to be stuck. And I don't want to do that. I don't want to get stuck somewhere.

I don’t want to go places as much, in that, where there’s a group of people, unless it’s a group of, unless I’m with basically a family or very close friends, because it’s like I can’t get up and do things. I can’t move around easily. You get a little more nervous about it. So, you end up just kind of sitting, and it just makes the whole thing harder for me. It will be interesting to see how other people feel about that, that would be in the same place I am. I’ve never really liked parties, social events, whatever, anyways. This just makes it harder.  And it’s like, you know, to go get food, I don’t want to be in a food line because it’s hard to have your cane and a plate and whatever else. So, somebody that I’m with, generally a family member, will get me whatever is in the buffet line for, you know, say, a wedding. It makes that more difficult; I think. Again, people are very nice, but you just feel that you can’t participate the way other people can. 

Neurologist in [PLACE] was a condescending S-O-B. And the way he put it to her was very poor, very scaring-- scary for both of us, very blunt, almost like he enjoyed. And that was one of the reasons we never went back to him and we searched for [INSTITUTION 1] doctors-- neurologist.
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INTERVIEWER: So, you've said you've been very happy with the doctors that you've had at [INSTITUTION 1] Can you talk a little bit more about that, like what's been positive about your experiences there? 

Well, I think it's their staff. Even if you call them, they're very helpful. It's not like they're trying to get you off the line quick. And the doctor does not seem to be in a hurry like he's in a time frame to get her out of his office. He's always been very patient with us. And there were several times where my son and my daughter came along, and my daughter-in-law came along to ask the doctor all kinds of questions that they had. 

They've been very patient. They're very nice to us. I can't say enough. It doesn't matter who it was contacted me, or I called down there or emailed. They're very patient with us and very nice. It's not like they want to get us off the line so they can do something else. 

You know, the earlier years I didn't want to go anywhere because it was hard to walk and I didn't want to use a walker. I was too ashamed and embarrassed. And in 2015, I started using a walker, and that just opened up a whole world. And I just went everywhere. And some people even made the comment, “we see you everywhere” because I was at the mall. I went all over town. Me and my best friend, we would just go out and run around. We'd go shopping. We go to the Dollar Tree and just joke around, and go to Hobby Lobby for hours. So that opened up a whole new world for me because it was limitless. I could go anywhere because I wasn't falling down anymore. And I wish I would have embraced that mobility aid sooner because I wouldn't have had to limit my walking time or only go to stores to have a shopping cart so I could hide it. You know, I'm going to lean on the shopping cart so I don't fall down.  

And so, the summer came. And like I said, we normally travel. And I was, kind of, like, a little concerned. But I said OK. So normally when we travel for the summer, I would go away for a month. So, I was able to get a two-month supply, because I needed to get the month that I was leaving and then the month that I'm coming back. So, I got the two month's supply. And I felt so weird, traveling with almost 12 syringes. But I had the prescription. I had the information of the doctor. And then the company that provides us with the medicine had a little pouch, a travel pouch with ice. And I said, OK. So, I figured, OK, so let's see. Hopefully, they won't stop me. But no, I had it in the carry on. They just asked what it was. I told them. And I said, OK, this is great. And this is before TSA was there. So, I figured, OK, this is good. And then here, I was able to do my normal injections. I figured, OK, great. So, I can travel, going through the airplane, and the airport. And then when we would come here, we wouldn't stay in the town. We would literally get on buses or taxis or whatever. Or we would rent a bus, and we would travel from place to place.  

Well, even just walking to my car. I'm trying to think of-- proximity to my front door, to my car, at times can be very challenging. I mean, again, I live in a condo. It's not like it's super far. But depending on my level of fatigue and my gait disturbances, it may be a very big challenge for me just to walk to my car. Driving is an issue. Every year, I go through a process of getting re-certified for my driving. I'm probably in a very small percentile of individuals who disclosed MS for driving. And so therefore, being in [LOCATION], you have to be re-certified through doctors and so forth to be able to drive. And at this point, it's become an annual process for myself. If I am experiencing a lot of symptoms in my legs and so forth, I'm not going to drive that day. So, anything can change on a dime, because it's very hard to have plans. Because I never know, when I wake up, how I'm going to be feeling during the course of that day. I may plan to get together with one of my daughters, and then need to cancel. So that's very difficult to keep any consistency with socialization.

So, anything that requires a lot of standing, walking, end-- any type of endurance in that arena-- those are probably the biggest things that I'm-- I can't do. I used to love tailgating for football games and then going to football games, but I'm not able to walk from the tailgate to the game. So, if I'm going to tailgate, I'll tailgate, and then I will drive to a bar and watch the game. So, I don't know, I feel like I'm pretty good, or I've done a good job of figuring out how to do the stuff I want to do working around the MS. Now, I'm never going to climb a mountain. That's probably not in the books for me. But that's OK, because I don't really like nature or mountains. I'm definitely a-- if I don't have 5G's on my cell phone, I'm probably too far out of a city. 

I don't really have-- do anything other than work. But everybody knows, and they're-- they’re very, like, if I tell them, I'm too tired, they don't, like pressure me. At first, they were, you know, they didn't really understand it, until I would send them articles and stuff like that. And they took the time, and invested themselves, and got to figure out everything for themselves. They chose to do that. So, they are very respectful of that. My family gets annoyed, because it's like I'm too tired. And they're like, “OK,” you know. You can tell they get annoyed, but it's more of them just like, they just want-- they're my family and they want to do something with me. And if I'm too tired, I'm too tired. They accept it, but you can tell they annoyingly accept it. 

But I made it through. I mean, I had, you know, people drove me and then the school where I taught, they made a lot of accommodations-- it wasn't a public school. So, they really worked with me, gave me really small classrooms, situated me by the bathroom. For duties that everybody else had to do, they gave me duties where I wouldn't be around people. Like, large spaces, like the auditorium or cafeteria-- everybody had a lunch duty, except for me. Instead, I just cleaned tables after school. So, I mean, they just did things to accommodate my, my vertigo, and to this day, I have serious, serious vertigo.

Well, you know, it was interesting, because I was actually the office expert in the [LOCATION] office of the attorney general on the Americans with Disabilities Act for five years before I was even diagnosed with multiple sclerosis. But it gave me a better understanding of a lot of things, not just the employment aspect, so the need to provide a reasonable accommodation and things like that, but also things that one would think would be like second nature for, like, medical institutions.  And I don't mean to rag on the neurology department at [INSTITUTION]. But you go there and the service representatives, the people who check you in, are sitting at a level where you need to stand to deal with them. A lot of people with neurological conditions are in wheelchairs.  Now, one would have thought that the architects and the designers-- and if not the architects and designers, the people who ran the place-- would have thought, hey, maybe we want to have at least one station where people don't-- you know, people don't have to peer up at someone when they're checking in. And so, you know, having knowledge about the Americans with Disabilities Act and also having made friends through that with people with mobility impairments in wheelchairs gave me an appreciation of what my rights were, and also a better appreciation of what some of the obstacles people face are, even in those situations where one would think there shouldn't be any obstacles.