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.
Thursday, March 18, 2010
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.
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.
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.
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 http://www.youtube.com/watch?v=qYEQFYtiEy0 - 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.
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 http://www.youtube.com/watch?v=qYEQFYtiEy0 - 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
Distracted
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.
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.
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.
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