Joining the Movement

"Join the Movement" is the trademark of the National MS Society. We all move in different ways, and by different means. We value any movement, and we hope that we keep being able to move, or that the ability to move, in whatever way, may somehow improve.

I've had this improvement in movement which I've never had since my MS started about 21 years ago. But yet, life goes on. MS is still MS - heat still really affects me, and stress really affects me as well. Ampyra has helped with so much, but it hasn't helped with heat tolerance. And though it has helped when faced with stress, everyone has their limits, and stress will still impact MS.

With stress, I've noticed I'm exhausted - not in the physical sense, so it's hard to explain, but it's a different type of exhaustion. I may drink more coffee to ward it off. Yesterday was spasm day - my legs jumped like they wanted to walk, which hurts and is annoying in a strange way. But today I actually took a nap! Yesterday, it seemed that within 15 minutes of sitting, my legs would spasm and I would have to get up. Today my legs ache - this dull ache - like when one has the flu, but just in my legs. I can still move. I'm still in this movement, still maintaining the same movement.

During these times, I've spent some time looking up, trying to ask God something, but I'm not sure what I'm asking. And so most of the time, I just look up. And there is a presence that will pull me through - I'm just not sure how. Times right now are hard for many people, in different ways, and we'll all be pulled through these times.

So I continue to move; I've joined the movement so I won't give up moving, even if it has to be through some spasms and pain. It's still the same movement - improving. There's just a "silent" component I'm battling. I think the "silent" components are most difficult in terms of people knowing, understanding, etc.

And when I spend the time to look up, I think God knows I should take some time in quiet, away from the chaos, to rest. I think, I hope, that taking the time out, allowing rest, will bring continued movement, but more importantly,

Peace.

Gifts

They really are gifts - each one has brought joyful tears (others don't see the tears - it would ruin my "image" :) )

The gift of music.
I went to visit a friend who gave me 2 CDs - one has 100 piano pieces. I am drawn back to my days as a pianist. I started in first grade, insisting that since my older brother took lessons, I should, too! Of the 3 kids, I continued through high school, practicing about 2 hours each night my senior year. On the CD, I found pieces I had played. Chopin's "Waltz for Piano No. 1 in E flat" - it's a dance, as if doing small leaps. Debussy's "Arabesque for Piano No. 1 in G" is like gentle waves. Mozart - always my favorite - I listen to the Sonatas and remember them. Strangely, the piece by Chopin brings me to tears. An unexpected CD from a friend brought music back. MS might have taken feeling away in my fingers, but I wouldn't be as good anymore anyway. The fact I played the pieces - that can't be taken away. Nor can the emotional feeling I get from listening to them.

The gift of balance.
We went for a picnic, prepared by my 8 year old daughter. Imagine - PB&J, yogurt, salad, and juice boxes. "Let's play frisbee!" Really? Do we have to? I'll just sit there and if I'm lucky the frisbee will hit me in the stomach and bounce off. I won't catch it. But I have the gift of balance. I sit, I reach, and I don't collapse. And then... I catch the frisbee! It doesn't just bounce off me. Do we have to leave? I can catch now!

The gift of today.
14 months since steroids. We're almost through summer. I think I may make it through the heat. So today, I celebrate.

God is smiling.

Peace.

The Times of our Lives

Life.

Joy. Happiness. Laughter.
Pain. Sorrow. Tears.

We all experience these. Perhaps when we share, we learn how we may be experiencing them all simultaneously.

Time with a friend.

We share accomplishments we have made in becoming physically stronger. We start with that.
Joy.

We move to other subjects. We discover that despite different lives, we're in the middle of some things we never expected. We're dealing with them. We see that there seems to be a ripple effect - one thing after another, trying to bring us down.
Pain.

We return to our accomplishments. We find similarities. We are different, yet we find that we are each becoming stronger and we each work at it. We share different versions of exercises - what was once really hard that has become easier with time.
Happiness.

We find our way back to the pain. We didn't expect this. We thought we knew people better, and we thought we could trust a bit more.
Sorrow.

Now we're back to exercise, but one person is doing a demo on the floor and I'm showing my little leg muscles and how I can kick.
Laughter.

Pain. Sorrow.
Tears. We find tears. Things hurt and we can't believe it.

Joy. Happiness. Laughter. This is the important stuff. It's important to not let the other stuff take over the best parts of life.

Two different people with different stories, each bringing with them pain, sorrow, tears, joy, happiness, and laughter.

We have been down different, yet similar roads. We struggle with the difficult. We cling to the good.

Most importantly we share.

We are not alone.

These are the times of our lives.

Peace.

Navigating

This past week I went back "home," to "Ft. Fun," aka Ft. Collins, to visit. I think Ft. Collins will always be home, but the longer I’ve had MS, the more difficult it has been to go back there, to navigate things that used to be so easy – things I took for granted until they became difficult.

The last time we were there was Christmas, after I had started Ampyra, but things were (and still are) difficult. When I'm where I live now, I have routines, ways I move about my house. It’s adapted for Beth. I can walk a lot in my house. It's "easy." But when I go anywhere else, things are never easy. In certain places, I develop my own way of getting where I need to go in a routine kind of way – say at church and at work. So in those places, I can be more "functional." Functional is just that – I can function walking, and the people there generally know me and how I "operate," or maneuver around the world.

This time in Ft. Collins certain things were still very hard. We went to lunch at a place where I had to walk a bit to get there, but I did make it. Then we went "home." That's always difficult – there are 2 big steps to get inside and the steps being so big seems to be the problem. Then it's summer, so there was the combo of already walking a lot, the steps, and the heat. Somehow I, or we (team approach!) made it. It was the next day when I realized that on other trips, I had used Nemo, the wheelchair. But Nemo stayed in the car, as I (or we) found new ways to navigate.

For those who have never lost any mobility, it's interesting and fascinating when it comes back. Mobility doesn't just "Pop!" come back. Muscles come back, but using those muscles is actually different. There's a transition to learning to use those muscles, to test them, to see if they are there. So over a few days, I was testing. When it was difficult to push or pull myself up, I might have failed once. But now, I instruct myself to push on specific muscles, generally my quad muscles, to pull up. After the quad muscle, I have to think of hip muscles contracting. Otherwise my legs straighten, but I am bent and can't move.
Many times I find myself doing this – reasoning through something. There are times now when I find myself "in trouble." But then I think wait, how can I get out of this? Is a leg crossed? Can I “uncross” the leg? How? Do I need to call for help? Before Ampyra, there wasn’t time to call for help. Now my legs can hold me in an awkward position and I have a bit of time to wait… for help, or to figure it out on my own. There are times when I do have to figure things out on my own, and usually I can. It’s not graceful, but I suppose it’s a new “functional.”

So as I went through the few days, I was thankful. Yes, nothing in life is ever easy. Everything I do requires thought - a big extra step when I think of how to move.

But then I realize I can do this. I can navigate.

Life is good. We are all held and loved.

Peace.

Monstro

"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.

Peace.

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.)

Peace.

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!

Peace.