Saturday, July 16, 2011


"Beth, I have bad news for you. Your car has oil leaks everywhere and we're not sure we can get them all out. You also need an expensive new timing belt. It's just not worth fixing your car."

And so began the search for a new car. I love the Subarus, but they raised the trunks of all crossover vehicles so I couldn't lift my wheelchair in (mostly because of my defunct shoulder). So there went that solution. No crossovers? Now what? And so, someone noticed that mini-vans all have lower trunks. I don't consider myself a mini-van person, whatever that is, but as I watched mini-vans drive down the road, I just couldn't envision myself behind the wheel of one.

They don't make many mini-vans. Also, due to the tragedy in Japan, availability of everything is down due to no parts.

Down to limited choice of mini-vans, we looked at several. Was the seat too high? Did the trunk have an open and shut button (I'm still glad I cycled up Vail Pass even though now I have shoulder needs added to leg needs). Is there a handle to grab when getting in the car? We eliminated the need for 4 wheel drive. Finally we found the best option. But then there was the car dealership calling me 3 times a day. This is a problem because half the time my phone is lost and the other half of the time it's in my car and I am somewhere else. The solution: use a broker who has been recommended to you!

Found a van, then found it had hail damage. Found another van. Now I needed hand controls and the place installing them wasn't returning calls - it was strange. Finally a different place installed them.

The van was ready! Just as I received an unexpected, unrelated phone call at work, I heard rain start to come down in sheets. Maybe this van was not meant to happen. The phone call ended; the rain slowed, and finally I was off to get in my car. In the middle of the parking lot, lightening and thunder hit. The phone call threw me. But somehow I was off to get the van.

Getting the van was the easy part. Now we're figuring out how to get it in the garage because it is just huge. It's seems so big that we're naming it Monstro (the whale from Pinocchio).

But inside Monstro, life is nice. I get free satellite radio for 3 months. I found a comedy station and then hit gold - the 80s! Listening to this music, I realize it is not quite as amazing as when I was a teenager, yet I crank it up and sing. I imagine I look ridiculous going down the road like this and create comedy for anyone who looks. That's ok - I got to sing "Never Surrender" and "Give a Little Bit of Heart and Soul." I never realized how cheesy this stuff is either, but that's ok. Def Leopard has some songs. Life is good.

Monstro is just fine. But in my next life, where I am still running, I want a Smart car. Those are awesome. And who knows - I still may run so maybe I'll get Smart car too, in this life.


Sunday, July 10, 2011

Remembering Aunt Dot

Today was the day of the small family service for my aunt, in Minnesota, at the gravesite of many relatives from my mom's (Holasek) side. I couldn't be there because it's too hot and humid right now - and I finally am listening to my body about heat - my body hates it. I think it's that I can't sweat, so I get in trouble. Anyway, I had my younger brother, Tom, read something. And I thought a lot about my aunt today - I still don't think it seems "real" that she is not here. Anyway... I think Tom read something like the following... (imagine long Os as part of Minnesotan accent my aunt had).

Ohhhhhhhh… Aunt Dot… it's Bethy
I have so many memories of you and it is hard to think you are not just a phone call away. It's also hard to think you may not randomly call me tonight, or that I might get something you found interesting in the mail, whether it be something on Lorie Line, on MS, on a Monet exhibit, or even something on protein powder!

The last time I emailed you I told you how wonderful my walking was, and it keeps getting better. I wish you could see it, but your spirit knows.

We had so many good times, and so many good laughs. There just weren't many sad moments with you.

You are one of the only people I know who never said a bad thing about anyone and would change the subject anytime I had something "not positive" to say.

You called me when I was in college and said, "Betheeeeeeeeeee, are you on that medicine, because I was on the same one and we are alike and I wasn’t myself when I was on it." That call came after I wasn’t myself and I WAS on that same medicine, and you were right. "Betheeeeeeeeee, you need to go off of that medicine." And so I did.

The time I spent living in Minnesota was made better by you. I got to go to your house and see Monet paintings and we would talk about them. Lorie Line – those are great memories. I would drive to Mankato for my birthday, and then you and Bill would take me to see a Lorie Line concert. And we did our annual leaf-viewing trip. And you worried about me, which runs in the family. You would call me and say “Betheeeeeeeeeeeee? This your aunt dot.” I never did tell you that the "Betheeeeeee" part gave it away. I just smiled because, well, it made me smile. I also had caller ID, so I knew when you were calling.

When Lori was born you came and rocked her endlessly, singing "How much is that doggy in the window?" Now she wants a puppy – I’m going to blame it on that song. But Lori also loves to sing, so maybe some of that came from you.

And then there was church. You had come several times to my church and finally said "Beth, you keep coming here so you should just join." And then, yes then, just as you would do or my mom would do (and now I do these types of things, too), you just walked up to someone and told them who I was and that I should join! Someday soon, Lori will hate that I do that kind of thing. But then she will do the same kind of thing at some point because it runs in the family.

And when you and my mom would get together - there was no mistaking that you were sisters! Ohhhhh yes. Sisters from Minnesoooooota who loved to laugh.

You brought a video camera to Grandpa's memorial and we have all seen it. We have seen that we would only let you capture the backs of us, and you can hear us, and you, all laughing as you try to capture someone's face. But with that camera, you captured Tim and Tom taking the "famous" red wagon down the hill, and all of us, including you, laughing. THAT is a memory to be kept!

I’m not there today, but I am there in spirit. Your spirit will be lifted even higher today. At some point, there will be laughter, and you will be there laughing too.

And maybe at some point, that red wagon will go down another steep hill.

Aunt Dot, this is Bethy. And I love you very much.

(Sniff. Miss her. Hugs to heaven.)


Friday, July 8, 2011

A Difference of Opinions

Let's call him Fred - the guy who sees me for leg braces which help me walk. I went to see him today because my PT thinks if I have a minor brace on the left, it would help. So off I went, to Fred's office, in the middle of Denver. It was 80+ degrees and the AC in his office didn't work. He was late, so I sat outside in the shade, people-watching - it's near a bus stop. In the middle of all the traffic and noise, a beautiful monarch butterfly flew effortlessly over it all - amidst the chaos, there was beauty, gracefully floating through the air.

Fred has his own brace business which he has owned for over 20 years and he knows a lot. But Fred doesn't have a disability. Fred thinks he is helpful. He is, in some ways. He knows anatomy! But I don't think he has ever asked for opinions on things, which can be just as valuable. If you want to really feel like you have a disability, Fred is your guy. To give him credit, he's trying to make life easier for people. But people are individuals. So here was the encounter we had. In parentheses is what I thought I should have said, later. I think I was tongue-tied at the time.

"Well, we have basically 2 choices, or do nothing. Now here is how you walk, so I know you are stable because you are bent over and that is how you extend your knee." Then he explained the choices - one helps lift the toes just a little while the other one lifts the toes a ton but causes the knee to give.

"But when you walk... well, let's not say it's laborious, but you expend a lot more energy than anyone else walking." Yes, I said, I burn calories! I smiled. "Yes, that's probably part of why you stay so thin." (Whatever - the new medicine means I'm not very hungry, but Fred, do you even know about the new medicine? When I talk about it, are you even listening?)...

... more explanation of various things ...

"You know Beth, I'm reading this book. Well, think of this. Some people get cancer and they decide to forgo chemo and make the most of life." I was wondering where this was going...

(Fred, first, for people with cancer, it's their choice and maybe the ones who do chemo make the most of life as well! But you're comparing that somehow to my desire to walk. You think I would enjoy life more if I gave up walking. You don't know me at all. I now realize that. To me, perhaps happiness is not doing the easiest thing, taking the easiest route. You see, I love walking. I love standing. I love feeling that I have leg muscles that work, even if it's not the same as yours. Others may love using a wheelchair. If I have a distance to go, sometimes I do, too. But happiness to me is standing. Happiness to me is walking, no matter how it looks or how slow it is. I really don't care if you approve or not. I am here about a brace.)

Things now get even more philosophical - who knew religious discussions occur at these appointments!!!

"Now Beth, I love life. But I can't wait to die."

(What?!! the... the... brace?)

"You see there are 3 important things to me. 1. God. 2. Helping others. 3. Eternity."

"You see, I know all kinds of bad things happen to people but those things are what make their lives better."

(Wait - so you think having MS makes my life better? Ummm... no. I'm sorry. It doesn't. I'd rather be walking or running. You don't know any of this because you don't have a disability!)

"If you hand things over to God, God will guide you. You see, it's not about looking in the mirror at yourself. It's about looking to God. God will show you where to go and God will help you."

(Fred, what the heck? God is with me always, but he hasn't given me an instruction book. God helps me by being there and by listening. I think God wishes I would spend more time focusing on letting him listen)

At this point I told Fred that God may not give instructions always, but once God did enter my life and told me I needed help and held me when I was deeply depressed. I don't think that's ever happened to Fred.

After a bit more, Fred got back on track and I told him I'd let him know which way I wanted to go.

I'm getting the more basic option and can order it myself.

I don't think I'll go to Fred again, but if I do, I'll take a friend!


Saturday, July 2, 2011


We are in an era where everything is required to be accessible because of the Americans with Disabilities Act (ADA). The ADA is a fantastic piece of (bipartisan) legislation which means we have ramps to everything, we have bars in bathrooms, we have at least 1 bigger bathroom. And while all of this is nice, it can still be a difficult world to navigate. As a person who uses a walker or wheelchair, I have to evaluate how strong I feel, how far it is to a place, how big the place is, how many doors are involved and how heavy they are, etc. I even have to evaluate bathrooms, and I know which places have my favorite bathrooms! So, in a way, though at times frustrating, it can be a bit comical to look at situations. Here are some... (read this knowing it's sarcastic and not meant to be serious, even though at times, these things are serious)

- There are accessible parking spaces that are close to ramps rather than stairs. But... those ramps may be so long I think I'd rather figure out how to do the stairs. In some cases, this has to happen due to slopes (like where I go to church, but then there are 2 entrances - 1 with a long ramp and 1 without). But in other places I look and think, hmm... this really makes no sense. Wasn't the point to make things closer?

- OK, I'll go there - bathrooms. Everyone make note that the accessible stalls are almost always the furthest. This is odd. Then there are bars. Over the bars are often huge toilet paper dispensers. The point of the bar would be? I use it to lean against the wall, or the toilet dispenser (and the big dispensers make it dangerous).

- Baseball practice time! I went to the park to watch my daughter, and was ready to park next to th other cars there... wait, where's the ramp? Oh... it's way over there, in the furthest spot, and that is where they have accessible parking! And, behind each accessible spot is a dip so when I put my wheelchair together, I almost fall. There are 2 sidewalks - one seems to go where she practices, so I take that ramp. The sidewalk goes for a way and then... it ends... with no ramp. ??? :)

- I'm now an online shopper! Codes were revised so that in dressing rooms, there are no bars, which is a definite problem. Dressing rooms are now prettier... and more dangerous.

- This morning I parked at a store in an accessible spot. The ramp was at the opposite end. Since I am writing this you know no one backed over me while I wheeled by them. Then there were heavy glass doors, and I have a bad shoulder, so I was glad to see they had an auto-open feature on them. They had the blue buttons too, but once I initiate opening the door, it should react and open, which it did, halfway. OK, I'll use the button. But it's blocked by a big sign. I'd rather they get rid of all the auto features and loosen the door to not be as heavy.

- A woman using a cane had walked from 1 department store to another and was exhausted. Her husband wanted a wheelchair for her. He had seen them at the entrance. But they were all locked together.

- These could go on forever, but think of this. When you leave a bathroom, there's a spot by the door, right? People think that spot is to put a trashcan so people can put paper towels in it. That space is actually required by the ADA so someone with a wheelchair can have the angle needed to pull open the door.

What I think is that people have the best intentions. They may read a book to design something right. It may be right by the book. But what if... in addition to reading the book... they invited some people with disabilities to take a look? We did that where I work. It must have been quite a scene! But when it's all done, it will be by the book and the people involved will be happy!

And where does God come in? Well, I think God is there beside me, getting a kick out of all this, knowing I'll stubbornly figure out how to get somewhere. He has a sense of humor and is laughing. Later, I laugh too, because at times, it's just funny how things are done.