Sunday, March 28, 2010

Contemplating Holy Week

My daughter, Lori, went on a fieldtrip and they walked past a cemetery... last summer. Since then, she sometimes refers to where it is and contemplates death. I let her develop her own thoughts, like this recent car conversation.

"Mommy, did you know that when you die they can burn your body?"
"Then you can't be buried."
"Yes, you still can, if that is what you want."
"Well, I don't want to be burned. Then I can be buried and the angels can just come down and get me, and they don't have to put me back together."
"What do you think the angels look like?"
"They have dresses ... (pause) ... Mommy, what do you think the boy angels wear?"
"I don't know. What do you think?"
"I don't know. Hey Mommy, did you know when you go to Heaven you can be whatever you want? So one day you could be a kitty. And your legs could work! And you could be old or young or whatever you want."

That is some great creativity! I wonder what she will do with the upcoming week, since she has been more intrigued lately.

It's been an interesting Lent. I've made more time to reflect, but it's not enough. I've used a book and I've sat and just thought about things. But I haven't had enough time, or somehow created enough time, the amount of time I wanted. So I'd say this is a distracting Lent. Often it's 9:30 and I'm ready for my alone time and I am just falling asleep because I've gone hard all day, and MS plus shoulder tell me that's it. Then I wake up early and do ok for a bit, before falling back to sleep for a bit!

Distracting. Life goes on. Out in the world, there aren't many mentions of Lent outside of church, aside from giving something up such as pizza. Life has even been a bit distracting within church. I'm struggling with agreeing to disagree. I just don't know if I can do that because I feel like I'm being a hypocrit to a group of people who have meant so much to me, given me so much, helped me so much, and never asked for anything in return. One in this group, who is also a Christian, is even trying to help me reconcile this! But ... distracting. Maybe this week can be different.

We're going on a mini-vacation to the mountains. MS will still be with me, and my shoulder will still feel like bones grinding together and reaching certain ways will cause pain. But many other distractions will be gone. I can leave work at home. There won't be a dance or piano lesson. We won't be doing homework or practicing piano. My mom will be caring for our aging pets. I won't have a list of phone calls to make to set things up. I won't have to think of cooking! This should free some time to just "be." And by taking away the distractions, I bet the MS fatigue goes down, and just "being" isn't accompanied by guilt at looking at a messy house or things not getting done. And thus, whatever faith journey I'm on, maybe there will be time to contemplate more. And there will be more time to listen Lori's ideas. I think there's a lot of insight there - it hasn't all come out yet, but it is coming. Her faith journey. And that then, becomes a part of mine.

"And now, let the weak say I am strong, let the poor say I am rich, because of what the Lord has done for us ... give thanks."

Thanks be to God.

Friday, March 26, 2010

Coloring outside my own lines

When I started this blog/diary, I told myself I didn't want to use it to write about politics - it's about my faith journey and MS. Well, I'm going to color outside my own lines, break my own "rules," and give a couple thoughts. I know people won't agree. But that's the glory of freedom of expression. And this is going to be a rare breaking of my "rules" :)

You see, it's healthcare. We needed to start somewhere. The US bill has some great things in it. It isn't socialized medicine - you can keep your healthcare as you have it now. I actually don't want socialized medicine. I was a baby in England and almost died before my parents added private insurance. My great uncle in Canada died because he did not receive follow-up screening in time. And in England, my blog friend Clare's husband is waiting 2 months for an MRI. That's ridiculous.

Reasons I like the bill:
1) Coverage for pre-existing conditions. Clearly, I have MS. I've had it for over 20 years. I have always been nervous that if I switched jobs, I could lose coverage. I have been lucky. I worked right out of college for the Mayo Clinic (non-profit) and immediately had coverage. After a few years, I moved back to Colorado and began to work for Kaiser Permanente (non-profit) and immediately had coverage. So many people are not that lucky. They may need to choose insurance called "Cover Colorado," designed for the uninsurable. It's incredibly expensive and your pre-existing conditions are still not covered for 6 months. And, interestingly enough, I utilize the system much less than some people without conditions. I am adamant about prevention, and I address any problems I have immediately. But I need coverage. And on the opinion-side, I believe healthcare is a definite right, not a choice.

2) Allowing those to remain on their parents' policies until they are 26. Bingo! There I was, 22, with MS, looking for a job. That's hard enough. Add MS. There was a lot of fear that I wouldn't get health insurance. My parents are incredibly supportive and would do anything to make sure I was covered. This clause would have alleviated a lot of the angst. So this age group is generally healthy. But young people don't know if they may wake up tomorrow and not be able to walk, be taken to the hospital, and diagnosed with MS. It's not predictable - it's a "BAM!" thing. Young people need insurance too.

3) The prescription donut hole. Very important. Take a standard long-term MS drug proven to delay progression of the disease. It's expensive. The first tiny bit is covered under Medicare. Then you're on your own for a few thousand dollars. Well, people on Medicare may be on disability, so they probably don't have a few thousand dollars on hand. So closing the gap is important.

No bill is perfect. But this is a start. And nothing had been started forever. For those who disagree, I understand. But change shoes. Are you healthy? Pretend you're the person diagnosed with MS at age 20. You have your whole life ahead of you. What are you going to do?

Tuesday, March 23, 2010

Color outside the lines - purposely!

"Disability is not an indicator of health." Disability is also not something that can easily be placed inside a box, wrapped neatly, and tied with a bow. It's also impossible to generalize disability and put it into some defined program, be it for employment, for healthcare, for general living, etc. It's very individualized, even though people with disabilities may find it easier to relate to each other. But you see attempts to package it quite a bit.

So what's a better way to proceed? I think, rather than trying to fit the round peg in the square hole, we learn another concept - that it's ok to color outside the lines. A sermon I heard on "coloring outside the lines" noted how kids at first are encouraged to color wherever, but are eventually taught to color within lines, and according to certain rules. This can be confining. But we can throw those rules out. I'm not a big fan of rules, as they can be too confining.

Disability inclusion in the workplace often "lives" in the land of Human Resources. There people explore ways to address the needs and concerns of those with disabilities who work. People work at workplace inclusion; work on promotion of those with disabilities; know this population is an underleveraged talent pool just yearning to move forward. Most importantly this area must think of talking and listening to those who have disabilities. That is where coloring outside the lines can occur - to listen to that distinct voice of those who live with disabilities each day. I have surprised numerous people by telling them that asking for an accommodation is one of the most emotionally difficult things a person with a disability might have to do, and the person asking may have no idea what they need. I've been there but was lucky to have friends pointing me in the right direction, for both emotional support and to help me determine what I needed. Many people aren't so lucky.

Disability inclusion can "live" in the land of healthcare coordination. But this area wants to explore disability via diagnoses as a means of identification - see the first sentence of this entry - the quote. Think more of coloring outside the lines. Like in the workforce, ways can be explored to address the needs and concerns of those with disabilities who seek medical care. Work on inclusion in the decision-making process; talk with those who have disabilities in the context of care; consider the whole person rather than a diagnosis or condition. Once someone assumed I was off-balance/dizzy due to MS rather than a procedure. I left and fell getting into my car. I tell people not to assume something is related to a diagnosis. Ask the person - it might help them think through a situation.

In whatever context, consider that everyone with a disability is different. I may want to be pushed up a steep hill while my friend may not. On the other hand, I may want to get my wheelchair out of my car myself while my friend may not. On the other hand, if we get a sudden spring snowstorm like tonight, I may have no desire to put my wheelchair back in the car (tonight I finally learned and flagged someone to help, rather than get caught in a dangerous scenario as is my norm).

I do not know all the needs of those who have different disabilities, or even the same, as mine. And just as everyone is different in general, each day, hour, second, or moment is different as well. Everyone has good and bad days. This is amplified for many people with disabilities.

Mostly, I think we, people with disabilities, want out voices heard - not solutions made without asking us. If there's a group setting, and someone raises a question on disability, is someone with a disability is sitting right there? What do they think.? Ask. Always (unless you know they don't want to be asked). It's pretty interesting to watch people jump into something, sitting next to someone who does know a bit more - it happens a lot. Of course everyone should be included, but that includes those both those with and without disabilities.

And I think people with disabilities want to know that people care, not that we're considered a pain. Often I hear the phrase of "dealing with" certain people and our "issues." We need to get past that. Jesus didn't deal with us. Jesus accepted us when others didn't. Jesus accepted so many who weren't accepted by anyone else. I think we could all learn a lot from this. Love each other; embrace disability; see potential; give acceptance. Open it beyond disability - there's so much else out there. Color outside the lines.

Saturday, March 20, 2010

Unexpected similarities

At the beginning of each year I have at least 2 or 3 calendars I want to put somewhere. This year, 1 calendar had skiing pictures of Lori and me, so that went right on my desk at work. The second calendar had gorgeous photos from Kenyon College, where I went to college, so that went on a wall at work. The third calendar I got at church and is unique in that, instead of being simply a religious calendar, it emphasizes various service work done by people in the Evangelical Lutheran Church of America. I put this calendar up on the wall and wondered if I would get in trouble, since it is religious.

What has happened is not what I expected at all. I tend to assume people are not religious or don't go to church. But the calendar has been a conversation starter. One woman on my team saw it and we talked about what her church, some offshoot of the ELCA, does for service - that seems to be their emphasis. Then I discovered another person goes to a big ELCA church, and we discussed how/why she and I have switched to the ELCA. Others look at it and are intrigued. So I have discovered that so many more people than I thought are religious, and more people than I thought go to church and it's a big, though mostly unspoken, part of their life. That also is interesting - it's unspoken, yet so important.

Another different similarity, somewhat unexpected, lies in the diverse interest in community service work, and the bonding power such work has. This needs an explanation! This week we kicked off our company's 2010 disability association with our first meeting (yes, it's March - it being this late to start speaks to the economy, really). Last year we started working with other multi-cultural associations the company has - our Veterans association and our GLBT association. I wanted to attempt a new community service "activity" this year which is a bit outside of what our association usually does. Surprisingly, adding this to our agenda seemed to attract a few new people to our meeting to learn more. Also surprising - people said let's not do this alone. Let's work with the Vet and GLBT associations, because they would love to be involved in this. And maybe that will bring other associations with it. Following the meeting, new people were gathering useful statistics and reaching out to other people they knew. So by finding similarities through new potential outreach, we find new energy, and can accomplish so much more.

It's great to see this happening. Things have been working in such silos lately. That isn't the most effective. As we break some of these small silos and learn to work together more, maybe someone will take notice and larger silos will break. We'll all learn what seems so obvious. Harry Belafonte has said it so well: "All of us are here for a very, very short time. In that time that we're here, there really isn't any difference in any of us, if we take time out to understand each other. The question is, do I know who you are? Do you know who I am? Do we care about each other? 'Cause if we do, together we can, turn the world around."

You have to love what he did with the Muppets ( I think he's right. Let's turn the world around, silo by silo.

Thanks be to God.

Thursday, March 18, 2010

Lifting Beth

For awhile, I've thought it would be great to have a lift (think mini-elevator) to replace the 3 stairs from our garage into our house. I'm normally fine with them - I somewhat pull myself up and partly use my legs - I figure it's good exercise. It's only been a disaster when I have an MS attack, but then everything becomes a disaster. But once my shoulder began to hurt, I thought that pulling myself into the house is just further damaging my shoulders. Certainly I could find a lift for $4,000.

Enter the MS Society. I know someone there who is great and gave me 4 resources and encouraged me to apply for a grant. As I tell people, I don't qualify for grants. They tell me am I sure? Maybe I should try... No, I'm 100% certain I wouldn't qualify (we're not rich, but we are fine and have 2 adults working good jobs). So I started through the sources.

Two of the sources referred me back to source #1, and he came and gave me an estimate. It just happened the estimate was $8,000! Now, I guess we could afford that, but it's not where I want my money to go. So, I asked this person if there were other brands. Back and forth started - did I know of other brands? Which ones? Could I give him their names and he would give me info on them? But the problem was, intermixed in the back and forth, emerged a patronizing tone... "brand x is the best because ... best warranty ... platform ... set up ... Beth, could you do the Internet research, because I can't compare to phantoms." The phantom conversation occurred because I asked about other brands. Shouldn't someone in that field know about other brands? In the end, I thought, this is really patronizing. Is this person being this way because they think I have a disability and can't think to explore other options? Is it because I'm a woman who also can't think to explore other options? Or is this just how this person is? Maybe it's how the person is - but then it's not a good way to get business from me. Even if I needed to pay $8,000, it wasn't going to go to him.

I called the last company on the list. This company talked about multiple brands. The guy who has talked to me has always listened and seems patient. He explored used lifts, and found the perfect one for me. It's not $8,000. It's $3,300. Wow. It's always good to explore options. I don't need the Cadillac lift. I need a lift that works, and a company that will service it if it breaks.

And I let the MS Society know how great they have been. I hope in what I do, I learn to listen more. I think after this I will listen more, and perhaps I'll learn a bit more about patience at the same time. And I will be lifted - into the house. Smile.

Monday, March 15, 2010

Here, there, everywhere...

If someone were to come clean all my stuff everywhere, they would discover this thing I do. They would find that, if they look one way, there's probably a Bible verse cut out and stuck to something. Or another way there may be a verse, hymn, or prayer lying on a table. There's a prayer taped to the side of my printer which is specially formatted, because I found it on the Internet and made it look better. One on my nightstand, my favorite verse (Romans 5) staring at me in our office at home. They're mostly cut from church bulletins or quickly printed from the Internet. At first, when I find these, they are each so important, but then they get a bit forgotten amidst clutter. The great thing is, since there's one hidden seemingly everywhere, I get these surprises when I open a drawer that hasn't been opened for awhile, or when I glance toward something I haven't in awhile.

I just got off the phone with my rehab doctor. He's my favorite doctor in the world, who always makes me laugh while at the same time takes all my concerns seriously and addresses each of them. I had a whole list of notes on what I need to know to help recover after my shoulder is carved (Jack-o-Lantern?). He was able to talk through all of these - we'll do this, we'll get you this, you'll just have to deal with this... Rather than telling me how much time I should take off, he asks me how much time I want off, because he knows I'll want less time than he would be willing to give me. And then he also gave me the name of a book to read. Bonus! Better order that!

So, I got off the phone and glanced. What's that piece of paper over there on my desk? It's been just sitting there, probably for at least 6 months. It says:

"God is our refuge and strength,
a very present help in trouble.
Therefore we will not fear,
though the earth should change,
though the mountains shake
in the heart of the sea;
though its waters roar and foam,
though the mountains tremble with its tumult."
Psalm 46: 1-3

I think I'll keep cutting those verses. Thanks be to God.

Saturday, March 13, 2010

Joy in the Spirit

I'm using a book called "Lenten Journey" as part of increasing my reflection time for Lent. It's a great book - I think I'll go through it again after Lent. Each day has a "theme" where I read a few pages and contemplate some things. A recent entry was on Joy. I like this - thinking about joy in life. So I'll answer 3 questions they pose, in the context of my life.

When do you experience spontaneous moments of joy?
- When I find some way to help someone, whether they know it or not.
- Whenever I enter the office for the BOEC (adaptive athletics), am welcomed, feel myself, and leave disability at the door.
- When my daughter, Lori, does something no one expects, but that gives her great joy.
- When my husband, Dave, and I exchange stories about Lori, and we laugh.
- Friday, when I skied a blue without falling - totally unexpected - joy!

When and in what do I lose myself?
- Handcycling (an attempted replacement for running). I'm out there, in my zone.
- Writing things like this - writing...
- Being outside - enjoying a gorgeous view - exiting the Eisenhower Tunnel in Colorado and seeing the vast expanse of mountains.

What spiritual practices help awaken contemplation in you?
- Sitting on my bed, legs crossed, in prayer and reflection.
- Being still, and alone, in silence, reflecting. God, why does it seem so difficult to find time for this one? It's my favorite.

Thanks be to God for moments of joy, and for being with us always, particularly during times of reflection and prayer.

Wednesday, March 10, 2010

Optimist, Pessimist, Realist

I am definitely a pessimist. This sometimes surprises people, but it’s true. I think it drives me. Tell me I can't do something and that motivates me to do it. It can also hinder me - it's an annoying voice in the back of my head telling me what I can't, or shouldn't, do, or what I will never do well - somewhat a voice of perfectionism gone wrong. But recently, I think I've switched roles and become an optimist, just in one area. How can that be?

With shoulder surgery scheduled, I'm working on getting my house more friendly to someone with one arm. I've thought about it, and decided I can take a week or two off from work, and then either be ok to go to work, or be able to work from home. My mom is planning to come to help quite a bit. Dave, my husband, works but he always is a help. I've scheduled a phone appointment with my rehab doc to talk about things I might need to help and for him to fill out the FMLA paperwork. So, although I have no idea how this will go, I'm feeling like I'm ok. And I'll get time to be quiet and still which is different for me.

Enter the rest of the world. Very few are optimistic about this. One person said: "WHAT are you going to do?" meaning how the heck am I going to get through this? When I tell people I plan to take one or two weeks off, the reaction is frequently rolling of eyes or a "good luck with that!" chuckle. Wait a minute! This paragraph is supposed to be me, the pessimist, playing my role.

I don't know WHAT I am going to do, but one of the few other optimists about this, and someone who has been through something similar, said, "You'll get through it. You’re Beth, and you know you can get through it." Someone else advised me not to be embarassed to need help, because I will need help, and I know this. Perhaps my return-to-work expectation is not realistic, but then maybe it is, because I bet I’ll get bored quickly. So, I think I'll remain the optimist. It’s a different role for me, but I like it. After surgery, hopefully I'll be a realist. But, I can play any role, apparently.

So as I head to the ski slopes Friday, I'm really wondering how the skiing will go, given that my shoulder has been hurting worse since I slipped on black ice. But life goes on. The optimist tells me I will be fine and I'll have my usual skiing day and may even surprise myself. The pessimist is that voice in the back of my head asking me why I am going skiing and telling me I am going to fall a lot. The realist is right. The realist in me tells me that I am going to the Breckenridge Outdoor Education Center for skiing because it is there where I don't feel different, where I am simply Beth. And there it can be determined how to adapt to my shoulder problems, rather than dwell on them. Simply, Beth. I like that. Simple.

Saturday, March 6, 2010

Guinea pigs with disabilities

My daughter, like all children, has very inreresting things to say. Most recently, I asked her how big she thinks guinea pigs are. To this, without hesitating, she said, "they get as big as cats. If they are smaller, then they have a disability." Interesting.

It's also interesting to watch her perceptions as she grows up. At one point she thought it would be neat for everyone in the family to have a disability, so for me it was my legs, for Daddy his eyes, for the cat her renal failure (worded differently), for the dog her panting. I don't recall that she had a disability though.

She's very intrigued by the parking. She hates the word "handicapped," especially when she sees it on a parking sign. She asks when my legs will work; she sometimes prays for them and for another guy who uses a wheelchair and goes to our church. She imagines inventions of shoes that will make my legs work. It is all intriguing.

After teaching to kids this week I have realized that the younger they are, the less they are likely to have pre-conceived notions about what people can do. Then someone pointed me to a talk by Aimee Mullen, who has said she loves that she is finally known as Aimee Mullen rather than her disability. She recited a version of a poem at a talk recently that comes back to kids. My daughter sees me and some limitations, but she also sees me as her mom, as any kid would do. So this poem which Aimee Mullen used to end a recent talk gives such a great sense of it all... (from - an amazing talk by Aimee Mullen)

The God Who Only Knows 4 Words:
Every child has known God
Not the God of names
Not the God of don'ts
But the God who knows 4 words
and keeps repeating them, saying
Come, dance with me
Come. Dance with me.

Thursday, March 4, 2010


There are times I think come on Beth... there's Haiti, there's Chile, there's poverty everywhere, there's adversity everywhere. So get a grip! But yet I can still be completely distracted. Now is one of those times.

It started with genetics, being an athlete, getting MS, still being an athlete. If I still ran, given genetics, I would have bad knees. But instead I have a bad shoulder.

Last summer I trained hard to handcycle Vail Pass, and I did it! It was worth it. But that's when the pain started--it seems so long ago. I tried physical therapy and then a cortisone shot in the shoulder. The pain came back. I thought I should make sure this wasn't really serious so I asked for a "preventive" (in my mind) MRI. It wasn't preventive. I met with 2 surgeons who showed me the MRI and said basically, "now this is bad, and this is bad, and this is related and bad, and it's all related to THIS! which is a BIG problem." This, that, and the other thing are complicated. The second opinion surgeon said, "yup, you're at surgery." Darn.

Denial! OK, I thought, surgery with local anesthetic as an outpatient - I can do that. I'll miss a few days of work and 6 weeks of handcycling and if I don't move my arm, it won't hurt. Well, now I'm told this will all take more time than was in MY schedule and there will be pain without movement. Me, me, me... distracted.

Today denial ended. I scheduled surgery - I do get to wait until after Easter and ski season - me, me, me... And then somehow I suppose this surgery will happen. I "get" to go to the hospital because I have MS. I suppose the precaution of getting admitted for a night is good, again, because I have MS.

I think I'll get through this. I just wish it didn't completely distract me from everything else. I now do everything because I'm afraid of what I will miss after surgery. I have to be at Lori's dance practices. I have to finish all the skiing. I have to help Lori with each piano practice. "Have to" isn't really true - it's just my mindset.

I wish I could just take all of this and hand it to God. I guess I have a bit over a month to think about that.

Monday, March 1, 2010

Teaching children

Today I got to go to a religious school and spend the afternoon teaching kids in grades K through 12 about people with disabilities from many angles - on what we CAN do (imagine lots of sports pictures and videos), about how we can have the same thing (ie MS) and be different both in disease and things we like / don't like. We explored some of what the kids thought and tried to change if something was misperceived. The K-5 group was my favorite - they didn't seem to have much bias. Maybe it's that I have a 7 year old, but they just seemed so much fun, and they loved seeing everything. The preschool class came up afterward and even gave me a hug - somewhat priceless!

In the presentation, one of the leaders had to explain how God loves us all, even though we are each different - we are each special. Then it got a bit sticky. She proceeded to say God gives us each things like disabilities. I wasn't expecting this. I hear it many times but it's not how I look at things, and many times, it's not really what people mean (that God causes bad things to happen). But, I have to say, I don't think God gave me MS because I'm special and can deal with it. So I explored her words with her before the older group of kids came. I think she really thinks God does cause things. I, on the other hand, have a definite opinion that God doesn't give us things like MS, doesn't cause things like Haiti or Chile disasters, but instead is a loving God who supports us through everything, good and bad. I believe evil exists - it is just there. And God supports us.

For the older kids, she gave a milder version of God giving us things that was leaning a little more toward God being there for us, and us each being special.

And so the day ended, and it was a very good day. Younger kids without bias who thought we could do pretty much everything got to see it all. Middle and high schoolers - a different crowd - hard to read. What seemed to hit them is when we discussed friendships we have somehow lost because of disability, because there seems to be some kind of fear. So hopefully, they can learn not to fear disability, but to embrace it.

Thanks be to God.