Monday, April 30, 2012

Cool breezes

Many years ago, on family road trips, packed in our station wagon, all 5 of us would travel for hours without stopping. We'd stop at a hotel each night, go get dinner, and then head back to the room. Then my mom and I would leave to go walk for a bit, in the middle of a strip of hotels. It was a time to get away from being squeezed into a car or hotel room. Generally a breeze accompanied us.

Years later, my mom and I would walk each night during the summer on a 3 mile or so hike around a loop. We'd walk to a bike path, stop at the frozen yogurt store, and continue walking while eating our yogurt, on a bike trail that went through fields and a park. Then we'd branch off and take the shortcut home. This was during college - special times, getting away from it all, and often, thinking back, the nightly cool breeze came with us.

At Christmas time, my mom and I would walk another loop through 2 neighborhoods to look at the lights. I remember one year, her saying, "maybe we should just wait until next year" since it was cold. And I recall saying "no, I don't know if I'll be able to walk this far next year." And so we walked, looking at beautiful lights, accompanied by a cold breeze while in the still of the night. That was the last time we did that loop due to weather and then it becoming too far for me.

The last big hike with my mom and younger brother occurred during college. I announced we would hike to Flatop Mountain, from Bear Lake, near Estes Park, and I announced we would leave very early, even though my mom and brother declare they are not morning people. We made our way up, at various times stopping, with 2 people wanting to turn back and one person saying we should go a bit further. In this way, we made it to the top, accompanied by a breeze and slight rain. That was the last time we did a long hike from there.

Now I'm told to walk nightly. No one is with me, the walks aren't far, and they can be in strange places like parking lots. But as I was walking the other night, I felt a cool breeze that brought me back to the other times I walked. It's a somewhat magical cool breeze. I feel something special, bringing me back to the other times. And though it's not like the other times, I am walking at night and feeling a cool breeze that remains after all these years.

Is it you, God?


Thursday, April 26, 2012


"Mommy, do you get embarassed when you use Bart (the walker)?"

For her, the most stares occurred at Disney World when I used a scooter.


slight pause...

"No. I think I decided a long time ago that I wanted to walk as long as I can. Think of it. I could use my wheelchair all the time. But the less I walk, the harder walking becomes, and that just makes everything more difficult. So awhile ago, I had to decide that although I care what people think, I still need to continue walking."

Flip it.

There's another, imaginary world where 99.5% of people use mobility devices like scooters, walkers, and wheelchairs. Scooters get a person to the top! A person who doesn't use any devices enters the scene.

What happens there? Who is embarassed and why?

And what does God think of all of this?


Friday, April 20, 2012

I think we're alone now

The title of this one is a song by "Tiffany" from the eighties. Moving on... (seemed like a good title for this post)

Although life is hectic and chaotic right now, I've been taking time to think through a lot. Make note: this is not a "feel sorry for Beth" post.

This week someone with a disability said in almost tears, "I just want this all to go away." The person meant how life had changed since disability, how the person just wanted life back the way it was. There is so much adaptation, so many adjustments, this person must do. With disability, in an instant life can be turned upside down.

I emailed another friend who has a disability to see how that friend is doing, and whether the friend had anything fun planned for the weekend. No, the friend was dealing with issues from buying a car and selling the old car. The friend’s pet recently passed and I thought maybe a new pet would help. No, because though my friend loved the old pet, it was a lot of work. Too much work. There’s not enough energy. So now my friend goes home to being really alone, with no pet. And there is so much for this friend in addition to the car. I bet my friend wants it all to go away. I bet many, most, all (?) would prefer it all go away…

I've been thinking of my life - disability came on more slowly for me - I've had time to "adjust." During this time I think my faith has probably gone through some "adjustments" - it has become stronger, which I suppose is the opposite of what one might expect. Each step of getting worse = stronger faith. I'm not sure why.

This post is about being alone - perhaps God takes away some of being alone, and perhaps that's why my faith has grown, although I don't know. At so many stages, people with disabilities feel alone. It’s not like other “groups,” where we go home and our family has disabilities (though they may). In general, we go home and are loved, but we’re the one with the disability and it's just us with that disability.

Our family went to Disney World very recently. It was a fun trip even though my husband was sick for half of it. He's a kid at heart, and did all he had planned to do - there was no stopping him! My daughter, being 9, also had a great time. I had a great time too - it was just different.

If you read the post before this one, you might think that I think being alone isn't so bad. But this post is a different kind of alone... it's somewhat of a forced alone.

I rented a scooter because the parks there are so huge (and my shoulder, for wheeling that far... well, that would be a dumb idea). The scooter itself was huge. My wheelchair feels more a part of me. The scooter was this enormous thing. In it, I felt largely removed from things. People constantly cut in front of it, and it felt like they were assuming I was by myself, that surely cutting in front of me and making me slow from an already slow speed wouldn't separate me from my family. But of course it did. I felt constantly in pursuit of my family. By the end of the trip, I was ready to return the scooter for fear I might hit someone out of frustration. I have to laugh at that - Beth and a scooter - probably not the best idea. So there’s the assumption that perhaps I was alone, coupled with me feeling alone in this gigantic thing that kept causing me to be separate from my family.

Scooters have to be charged nightly. This is important. Unfortunately, I was more concerned with charging my Bioness than the scooter. And I didn’t know it, but the scooter I had went from showing it was fully charged to being on empty. One morning, the morning after I didn’t charge the scooter (but the Bioness was back at the hotel, fully charged! Funny in retrospect.) I ventured out alone with the scooter while my husband and daughter went to a water park. It was my time to shop! And of course, the battery of the scooter went from full to empty just as I started shopping. I made my way slowly back to the bus with people giving me extra (my daughter informed me that lots of people stared at me on a regular basis) strange looks as the scooter went through periods when it would lurch forward - a hiccuping scooter.

I got back to our hotel complex - it was a long way from where the bus stopped to our building and room. Kachunk. Kachunk. Kachunk. Lurch. Lurch. Lurch. And then it started to rain (the only time during our whole trip – rain, a lurching scooter, and the rest of the family at the water park – great timing!). Lightning is probably my biggest fear, so in fear of that, in the middle of an open area, by myself, lurching and not getting very far, I yelled at a guy in the distance to get him to help. After 3 yells (I have a soft voice, but it got desperate enough to actually be heard), he heard and pushed me between 2 buildings and under an overhang, just before it began to rain really hard.

Tense moments with God there - God, I need help, God, please get me to a safe place, God, be with me. God? And there I sat. The rain was a downpour for an hour. I had a book! But I sat there, nothing to do, no one around, alone, thankful I got to a safe place. Even if someone had been there, I couldn't have moved because it was an intense storm, and there was a lot of lightning. Eventually I got back to my room. There’s another story there, but this entry will be long enough.

Vacation with a disability is always different. Every bathroom is different. With the enormous scooter, some just didn't work. I also had my walker on the back of the scooter so this whole thing was really, really huge. You should laugh or chuckle now because I'm not a big person (5 ft 4 inches, 110 or so pounds), the scooter's weight limit is 250 lbs, etc. I couldn't develop any kind of normal since every bathroom was different. What makes every bathroom different asks a person without a disability, perhaps? The door handle can be in a different spot, and reaching it, and closing the door, can be issues. The toilet paper can be in a different spot and can either be above or below the bar next to the toilet. Overall dimensions of any bathroom when given such a big scooter are hard. Some bathrooms aren't made at all right, so I would leave the door open with the scooter sticking halfway out, hoping people wouldn't come investigate why this must be so. I think, if someone had come to investigate, I should have been ready to wave.

Hotel rooms - all different. Imagine having a walker, a wheelchair, a huge scooter... and then 2 leg braces and all the new mechanical stuff meant to replace one of the braces someday soon (and the charging stuff, because even if the scooter wasn’t charged, the Bioness was!). On top of that, add I had to figure out how to set everything so I could move. Lori enjoyed jumping between beds. I figured how to make spaces to move. No jumping for me.

I haven’t mentioned alone for awhile, but it seems like it should be obvious. I’m thinking most people on vacation get up and ready, eat, go ride the rides, maybe stare at the people in scooters (according to my daughter). I’m navigating through a bunch of stuff and there are times when I felt alone, swallowed by this enormous scooter, in my own world.

Vacations are not the only time of being alone. When I go to new places, even if people I know are there, it can be strange. I went to one place, so proud to be walking. I walked in and saw people I knew who normally smiled at me and said hi. But there they were, with a half-smile, as if this bent over woman walking was a bit embarrassing to them, and they weren’t sure what to do. So they somewhat moved their eyes as if pointing me in the direction I was supposed to go. Awkward. But, in cases like this, it’s how I meet people. I sat where I didn’t know people, and met them. Neat people. They weren’t embarrassed by me. If I had used my wheelchair, would it have changed anything? Do I care? Actually no, because I got to meet more people.

We returned home from vacation to a bit of chaos. My husband was sick. I was sitting on a chair and suddenly got very cold. When I tried to get up, my legs didn’t work. So I made my way without my legs, along the floor, and then got very hot. I had some sickness. By the next morning I could move slowly and went to an appointment. While there, Lori started screaming that her ears hurt, so we left and went to the doctor. Then people started asking about the trip… I think all I could think was how alone I felt when my legs suddenly failed, with my husband asleep on the couch. Alone. I talked to God, actually. What is happening? What is this? We spent a week recovering. I think we were all almost better. And then this week the lift into our house broke suddenly, which is my only route in. It was fixed in a day, but….. alone……. And a lot of other stuff this week has led to the same feelings. I’m glad the week is almost done. This can’t go on. I think God may be sick of listening to me!

So the point of this whole entry? I’m not sure. Like on Easter when our pastor said he wasn’t sure how to end the sermon (except it was a different topic completely, so this is just about ending things), I’m not sure how to end this blog entry.


Perhaps isolated is a better word.

But alone is never alone, and isolated is never really isolated, because I think God is always there. And so ight now, in front of me, is a quote:

“peace. It does not mean to be in a place where there is no noise, trouble, or hard work. It means to be in the midst of those things and still be calm in your heart.” ~unknown

I suppose, with all the chaos, I found some kind of piece via talking to God. It didn’t really feel that way at the time. But it makes sense.


Thursday, April 12, 2012

New therapies give hope to those living with MS

The was actually written by 4 people, although in publication, it says I wrote it. It's great how we have new therapies. But there still is no cure for MS. The MS Walk/Roll/Combo is coming up (May 5 in Denver) and YOU can donate to help end this disease. I am walking better but am not cured. Until we can stop this disease, funding efforts will not end. Besides searching for the cure, the MS Society works with people with MS. I'm trying to get a grant from them for the new Bioness I am trying. Their President, Vice President, and many more have helped me this year. So to donate (or join the team),

Please, please, please...

and now the article which is in the spring edition of "Connections," by the CO MS Society...

Two weeks after our high school cross country team won the State championship, I woke up feeling like both my legs were tingling. Three years later, I was diagnosed with MS and had to give up competitive running. That was 19 years ago.

Though I don't run now, I stay very active and am always aware of the latest research developments. I am a Walk MS Team Captain for the team "May You Dance." The money raised is critical to fund research for MS therapies like Ampyra, a newer, oral symptom medication that helps people like me walk.

Before starting Ampyra, I could only walk 50 feet without stopping. After closely following the results of clinical trials and hearing of Ampyra's FDA approval, I talked with my rehabilitation physician and began taking it. After four months on Ampyra, I went to a track near my home and finished a full, daunting lap, using my walker and taking six rest breaks in an hour.

Physical therapy (PT) is also critical to my success - I didn't just swallow a pill and hope for the best. My physical therapist teaches me exercises and stretches, and introduced me to a gait-assisted treadmill, which holds my upper body in place while I walk.

Like a baby discovering how body parts work together, I have discovered that if I think and believe in myself, body parts are working together again. If one foot starts sliding into what used to be a certain fall, I can concentrate and it will move back. If my walker goes too fast, I can concentrate and pull it back. It's not automatic.

Ampyra and extensive daily PT has helped me rebuild strength and endurance in my legs and core, which also has helped with my balance. In January, I walked around the track in only 20 minutes, with no stops to rest.

If you are considering any new treatment, push yourself; test limits. Each treatment works differently for everyone. Before Ampyra, I Kept walking as much as I could. Now I walk more, but I can also play catch and frisbee with my daughter and husband, button my clothes more easily, and sit straight. Rather than limits, I see possibilities.

We can all contribute what we can toward this cause, be it money, time, or service. It's really up to us. May we all dance.


Wednesday, April 4, 2012

In the still of the night

We're (our family) back from Disney World, which is fun although crowded, people everywhere, excitement everywhere. Each morning and night I had to find time to walk with the new Bioness. I have to walk 15 or 20 minutes each morning and night, and then I have to sit with the device on me in "therapy" mode, where it stimulates leg muscles (and that feels really good, strangely). And if you know me, you can bet I did this walking ritual every morning and night.

The night was the best time to walk - though everyone, including me, was tired, it was the time when things were most quiet. One night, Dave and Lori were asleep, it was midnight, at last, quiet.

Our hotel had outside hallways - long ones; I could also circle the hotel.

The pool was closed. Quiet.

There were people, but fewer. It was light (lit hallways), and it was safe to be out alone, at midnight, walking.

The world finally felt still.

On the midnight walk night, everything was right.

A cool breeze... the heat of the day had passed.

Walking, walking, walking... alone with my thoughts, time to think.

Strange being there, the week before Holy Week, with no sign of Lent anywhere. I'd expect this, but it was still strange.

At odds with the world then... contemplating Lent, walking at midnight as others slept.

Amid the chaos, I found peace, even in the walking, which looks chaotic, but brought me to peace.

In the still of the night my thoughts continued, my walking continued, and I was happy for a break from the "chaos" that is simply the enormity of Disney World.

I finished. 30 minutes without stopping, in the still of the night.

At peace.