Staying in an acute rehab hospital is definitely an experience. Everyone seems to stay in their own room; they seem a bit older than me; and I think generally there are more than physical disabilities for people here. I think I'm the only mom with a child. But perhaps that adds to the variety of it all.
It was a pretty tough day of meeting and working with physical and occupational therapists... pretty serious stuff. But it started with a phone call home at 7:30 this morning. "Hi Mommy!" piped the cheery 7 year old who then went on to tell me the foods she didn't like.
Then at 4:30pm ... quiet ... giggle, giggle ... enter Lori and Grandma. That's when the fun of the day started. We took her paper airplane outside to the "park" and watched as she repeatedly threw it. We used the bridge to play "3 Billy Goats Gruff." And then leave it to Lori to find the toys. Grandma, Lori, and I ate dinner, each in a wheelchair. There are now 3 wheelchairs in the room - Nemo (mine), my grandma's (it has arms so I may use it), and a borrowed power chair. The power chair! What fun! I haven't used it, but Lori hopped on it and took it around the halls.
Enter Dave (my husband), in the middle of this giggling driving lesson. Back outside for more airplane action. Back inside. Lori really can add a spark to this serious place. We continue to live, but realize the love we all have and the laughter we share.
And I remember why I love being a mom. It's such a great gift.
Thanks be to God.
Thursday, April 15, 2010
Wednesday, April 14, 2010
Hospital observations:
Post-surgery:
The nerve block from surgery made my arm and hand go numb. Amazing strange sensation that the numb hand was at chest level when it was really by my side.
I don’t really like tv – it seems annoying. I thought I was more addicted.
Confirmed I’m not a phone person – I left my cell phone at home. The other person in my room loves her phone. But she’s not a computer person -I am.
I like to type, then nap, and alternate these activities.
Hate relying on others!!!
Yup, I’m right handed – more difficult!!!
I can get my pulse to 121 just by registering for surgery.
I like seeing the cross on the wall in front of me.
I like the note Lori wrote me that I’m brave, and all her get well mommy stuff.
I have confirmed to people that I work – why such a shock?
So many beeps and machine noises at the hospital.
Some people think that all people with MS are the same. I love the people who realize that we are not.
"How often are you wheelchair-bound?" Answer: "Never. A wheelchair is freeing." New concept, I guess! :)
Now to rehab... what fun!
God is here somewhere... but the cross is gone at rehab and I miss it!
The nerve block from surgery made my arm and hand go numb. Amazing strange sensation that the numb hand was at chest level when it was really by my side.
I don’t really like tv – it seems annoying. I thought I was more addicted.
Confirmed I’m not a phone person – I left my cell phone at home. The other person in my room loves her phone. But she’s not a computer person -I am.
I like to type, then nap, and alternate these activities.
Hate relying on others!!!
Yup, I’m right handed – more difficult!!!
I can get my pulse to 121 just by registering for surgery.
I like seeing the cross on the wall in front of me.
I like the note Lori wrote me that I’m brave, and all her get well mommy stuff.
I have confirmed to people that I work – why such a shock?
So many beeps and machine noises at the hospital.
Some people think that all people with MS are the same. I love the people who realize that we are not.
"How often are you wheelchair-bound?" Answer: "Never. A wheelchair is freeing." New concept, I guess! :)
Now to rehab... what fun!
God is here somewhere... but the cross is gone at rehab and I miss it!
Saturday, April 10, 2010
When you don't get to say goodbye
I think everyone knows those times - when you suddenly discover you probably won't see someone again and you wish you had said more to them, had taken a bit more extra time with them, or perhaps just treasured each time you saw them, because you never knew which time would be the last.
A person I knew - not well, but we knew each other throughout the years as I transitioned from programmer to program developer (or whatever what I do now is called), and she transitioned up the ladder as a nurse. My MS changed and she had a son born with Cerebral Palsy. She is an advocate for worthwhile causes, and has this way - when she says something, people listen. Action happens. We started to collaborate on disability and healthcare. And then, all of a sudden she left. The last time I saw her was when I presented on disability at her kids' school. I thought it was neat - we hugged goodbye because of the context of everything. And oddly, that was, in a sense, a final goodbye hug. Unexpected.
My friend Steve had lymphoma and we had known for some time. He had a stem cell transplant. He and I talked about it at length in his office. I thought it was a cure but he told me it only bought him time. I started to use a walker and he brought me one of those bike attachments that looks like a trumpet. You squeeze part of it and it beeps. That's how, we joked, people would get out of my way. A gift like that from some people might have been at the very least, annoying. But from Steve, it was funny, and we joked. Then work got busy. His office door was closed more. I thought he was just busy. And then he was gone. The trumpet device never got attached to the walker, but it sits on my desk at work as a reminder of Steve. I wish I would have spent more time when we were both busy.
So work can do that - everyone is so busy, something happens, and everyone is left with jaws dropped. And perhaps one day I will learn to take more time and be less busy. But, I will be grateful for these 2 people. They both had passion for what they did. And we did spend time together - there's just never enough. They taught me so much, and we shared so much.
And how often do we really get to say goodbye, or at least a very heartfelt, "see you later." Not often enough.
A person I knew - not well, but we knew each other throughout the years as I transitioned from programmer to program developer (or whatever what I do now is called), and she transitioned up the ladder as a nurse. My MS changed and she had a son born with Cerebral Palsy. She is an advocate for worthwhile causes, and has this way - when she says something, people listen. Action happens. We started to collaborate on disability and healthcare. And then, all of a sudden she left. The last time I saw her was when I presented on disability at her kids' school. I thought it was neat - we hugged goodbye because of the context of everything. And oddly, that was, in a sense, a final goodbye hug. Unexpected.
My friend Steve had lymphoma and we had known for some time. He had a stem cell transplant. He and I talked about it at length in his office. I thought it was a cure but he told me it only bought him time. I started to use a walker and he brought me one of those bike attachments that looks like a trumpet. You squeeze part of it and it beeps. That's how, we joked, people would get out of my way. A gift like that from some people might have been at the very least, annoying. But from Steve, it was funny, and we joked. Then work got busy. His office door was closed more. I thought he was just busy. And then he was gone. The trumpet device never got attached to the walker, but it sits on my desk at work as a reminder of Steve. I wish I would have spent more time when we were both busy.
So work can do that - everyone is so busy, something happens, and everyone is left with jaws dropped. And perhaps one day I will learn to take more time and be less busy. But, I will be grateful for these 2 people. They both had passion for what they did. And we did spend time together - there's just never enough. They taught me so much, and we shared so much.
And how often do we really get to say goodbye, or at least a very heartfelt, "see you later." Not often enough.
Thursday, April 8, 2010
The Cave
Sometimes I wonder how I will get through a period of time. I get through it and sometimes it's not pretty, or it's a strange mixture, but it happens. This week - what a strange series of events! I've felt in a cave, wanting to get out, get away, breathe, escape. But the cave keeps drawing me back...
Working so hard as if surgery depended on it. Sometimes I wonder why I can't just say no, but that I want/have to get everything done. And I am training someone to do what I do in a week. I get a parking ticket for a strange reason. I get pulled into a big discussion on parking at work.
I have to get a bunch of paperwork and appointments done - forms for work, acupuncture, forms for surgery, appointments for surgery, meetings. The lift at home is finally installed.
And then there is school and a paper. No choice but to get that done.
And then random things seem to get lost. And then one by one, they are found, and there's a sense of relief, some glimmer somehow, of hope.
And I am tired. My reflection time from Lent seemed to evaporate as soon as Easter arrived. I want it back. It's been replaced by frustration and frenzy that somehow, I appear to be ignoring. I'm not listening to reason.
But if I hold on for just a few days, I get to do a few things I love. Then I get to rest, in a strange sort of way. I get to put things away. I get to sleep. And so, although it will be hard, I will get to sit, and reflect, and watch my legs jump :) It seems so minor and silly, and at the same time so difficult.
And once again, God pulls me through the thick mud with glimpes of joy along the way. And though this may get old for some...
Thanks be to God.
Working so hard as if surgery depended on it. Sometimes I wonder why I can't just say no, but that I want/have to get everything done. And I am training someone to do what I do in a week. I get a parking ticket for a strange reason. I get pulled into a big discussion on parking at work.
I have to get a bunch of paperwork and appointments done - forms for work, acupuncture, forms for surgery, appointments for surgery, meetings. The lift at home is finally installed.
And then there is school and a paper. No choice but to get that done.
And then random things seem to get lost. And then one by one, they are found, and there's a sense of relief, some glimmer somehow, of hope.
And I am tired. My reflection time from Lent seemed to evaporate as soon as Easter arrived. I want it back. It's been replaced by frustration and frenzy that somehow, I appear to be ignoring. I'm not listening to reason.
But if I hold on for just a few days, I get to do a few things I love. Then I get to rest, in a strange sort of way. I get to put things away. I get to sleep. And so, although it will be hard, I will get to sit, and reflect, and watch my legs jump :) It seems so minor and silly, and at the same time so difficult.
And once again, God pulls me through the thick mud with glimpes of joy along the way. And though this may get old for some...
Thanks be to God.
Tuesday, April 6, 2010
Baseball season
In a different kind of way...
It seems that to have a successful baseball team, a number of different things are needed. You need a coach/manager to coordinate everything. You need a pitcher who not only pitches, but "listens" to the catcher and the rest of the team, because I'm told the catcher really directs things. You definitely need a catcher who can coordinates a lot, and who directly relays messages to the pitcher. And you need a supporting "cast" with an infielder, 3 basepeople, outfielders, and people in the dugout. What happens when things aren't quite right? Can the team still be effective? Can the team still win? What qualifies as winning? What happens when the team is "thrown a curve ball?"
Consider this scenerio. The pitcher is the absolute best as an individual pitcher. He has some tunnel vision, thinks his pitching is all that matters, and in a sense, runs the show, not listening to anyone, really. It's always worked for him - why change now? The catcher has the best intentions, but with a lack of communication with the pitcher, he's a bit stuck in only being able to effectively communicate with other team members.
Oh no! Where's the coach? It doesn't appear there's a coach. The pitcher might have told the coach to go away. That's unfortunate, because there's an upcoming game where a coach is needed.
Well look - here comes the infielder. Someone determined he should show up, but he's not sure how long he'll be there. He'll be there if requests for him continue. The catcher has talked to him, and the catcher effectively has communication with first, second, and third base. But this pitcher and lack of coach seem to be a problem.
Add some outfielders. They are thinking "what if," and they're great, because they've thought of many different scenerios. But they're not in contact with anyone in the infield. Too bad. They have vision. But one outfielder is confused with the whole process. This outfielder can't catch the ball and didn't think you needed to be able to catch to be an outfielder. Hmm... Someone has to catch those flyballs!
Wow. So we need a coach who can get through to the pitcher. The pitcher needs to be more of a team player. The infielder needs more involvement. Without some of this, routine games may indeed be won. But unexpected games - I'm thinking there may be problems.
That's baseball. No, actually that's a comparison I'm making for my shoulder surgery. Different players - can you place where they are in this mix? There's the orthopedic surgeon, the rehabilitation doctor, the physical therapist, the MRI, the durable medical equipment company, the chronic care coordinator, a nurse, another outside physical therapist, and a bunch of people in the dugout asking questions. I'm not sure where I am. I certainly hope they get a coach soon! These are interesting times!
It seems that to have a successful baseball team, a number of different things are needed. You need a coach/manager to coordinate everything. You need a pitcher who not only pitches, but "listens" to the catcher and the rest of the team, because I'm told the catcher really directs things. You definitely need a catcher who can coordinates a lot, and who directly relays messages to the pitcher. And you need a supporting "cast" with an infielder, 3 basepeople, outfielders, and people in the dugout. What happens when things aren't quite right? Can the team still be effective? Can the team still win? What qualifies as winning? What happens when the team is "thrown a curve ball?"
Consider this scenerio. The pitcher is the absolute best as an individual pitcher. He has some tunnel vision, thinks his pitching is all that matters, and in a sense, runs the show, not listening to anyone, really. It's always worked for him - why change now? The catcher has the best intentions, but with a lack of communication with the pitcher, he's a bit stuck in only being able to effectively communicate with other team members.
Oh no! Where's the coach? It doesn't appear there's a coach. The pitcher might have told the coach to go away. That's unfortunate, because there's an upcoming game where a coach is needed.
Well look - here comes the infielder. Someone determined he should show up, but he's not sure how long he'll be there. He'll be there if requests for him continue. The catcher has talked to him, and the catcher effectively has communication with first, second, and third base. But this pitcher and lack of coach seem to be a problem.
Add some outfielders. They are thinking "what if," and they're great, because they've thought of many different scenerios. But they're not in contact with anyone in the infield. Too bad. They have vision. But one outfielder is confused with the whole process. This outfielder can't catch the ball and didn't think you needed to be able to catch to be an outfielder. Hmm... Someone has to catch those flyballs!
Wow. So we need a coach who can get through to the pitcher. The pitcher needs to be more of a team player. The infielder needs more involvement. Without some of this, routine games may indeed be won. But unexpected games - I'm thinking there may be problems.
That's baseball. No, actually that's a comparison I'm making for my shoulder surgery. Different players - can you place where they are in this mix? There's the orthopedic surgeon, the rehabilitation doctor, the physical therapist, the MRI, the durable medical equipment company, the chronic care coordinator, a nurse, another outside physical therapist, and a bunch of people in the dugout asking questions. I'm not sure where I am. I certainly hope they get a coach soon! These are interesting times!
Sunday, April 4, 2010
Look Up!
He is risen! He is risen indeed! What a wonderful day - happy Easter!
My best memory ever of Easter is the Easter of my sophomore year in college. It had been a rough fall where my body seemed to be falling apart with no explanation, and then I was diagnosed with MS. But right around the time I was diagnosed, things started to change. My legs started to work better again - a cloud seemed to lift. MS is so unpredictable. I began to run again (and in my senior year, completed a marathon). It was slower running, but it was running, and it was awesome. I remember the smells of spring, the feel of the air against my face, cool mornings, a new appreciation for each day, an appreciation for each time my legs lifted and ran. On Easter that year, before church, on a cool and clear morning, I went and ran up a long hill to a golf course, did a few laps, and returned to campus. Kenyon College is in a very rural area, so getting off campus and running was heaven - being out in nature.
As I ran slowly down the hill from the golf course toward Kenyon, a woman drove by me, window rolled down, and exclaimed "Happy Easter!" A big smile came to my face. I'll never forget the feel of that cool morning breeze and being out in nature. The feel of Easter was all around me. Out there, no one around me, I extended my arms up, circled, and looked up.
I gave thanks to God for being with me through the worst, and also, being with me through the best. That morning was one of the best.
Today I continue to look up, and tomorrow I will be looking up again, for a different reason, because life goes on. You see tomorrow, my high school friend Dorothy is headed into space. So many of her friends will wake up very early to watch the launch, looking up via computers, wishing the best for her. Life has gone on through Lent and goes on now. And I look up, tomorrow for Dorothy. May she have a peaceful journey and return safely. And may God be with her.
Thanks be to God. Alleluiah!
My best memory ever of Easter is the Easter of my sophomore year in college. It had been a rough fall where my body seemed to be falling apart with no explanation, and then I was diagnosed with MS. But right around the time I was diagnosed, things started to change. My legs started to work better again - a cloud seemed to lift. MS is so unpredictable. I began to run again (and in my senior year, completed a marathon). It was slower running, but it was running, and it was awesome. I remember the smells of spring, the feel of the air against my face, cool mornings, a new appreciation for each day, an appreciation for each time my legs lifted and ran. On Easter that year, before church, on a cool and clear morning, I went and ran up a long hill to a golf course, did a few laps, and returned to campus. Kenyon College is in a very rural area, so getting off campus and running was heaven - being out in nature.
As I ran slowly down the hill from the golf course toward Kenyon, a woman drove by me, window rolled down, and exclaimed "Happy Easter!" A big smile came to my face. I'll never forget the feel of that cool morning breeze and being out in nature. The feel of Easter was all around me. Out there, no one around me, I extended my arms up, circled, and looked up.
I gave thanks to God for being with me through the worst, and also, being with me through the best. That morning was one of the best.
Today I continue to look up, and tomorrow I will be looking up again, for a different reason, because life goes on. You see tomorrow, my high school friend Dorothy is headed into space. So many of her friends will wake up very early to watch the launch, looking up via computers, wishing the best for her. Life has gone on through Lent and goes on now. And I look up, tomorrow for Dorothy. May she have a peaceful journey and return safely. And may God be with her.
Thanks be to God. Alleluiah!
Thursday, April 1, 2010
Torn down; lifted by love
I was a sophomore at Kenyon College and something was quite clearly wrong. I couldn't run. I would go watch the cross-country practices and help time intervals. All I could do was watch from the sidelines. This was not right.
After one interval session, we all came up to the dining hall. The team came around me and handed me something, a note. A few years ago I had also visited Earlham College, a small Quaker liberal arts college - one of the 4 colleges I considered. They happened to also be in Kenyon's athletic conference and had noticed that I had disappeared from the running scene. In this small world, the coaches had talked, and the Earlham team, who I had met, sent me this note. They said their thoughts were with me and they wished me the best. It made me cry then and it makes me cry even today. Love one another.
This past summer I was training to handcycle up Vail Pass. I was getting up early to ride. I was exhausted. Work was really difficult. It seemed there was some finger-pointing occurring, and I was somehow a target. So I would come home exhausted.
One day I came home on one of my most exhausted days when I collapse and wonder how we're going to have dinner. That day there was a random letter waiting for me. It was from my high school cross-country coach, who didn't even know about my training for Vail. The card had a picture of a trail, similar to switchbacks we used to run in the mountains. It said "the climb may be steep, but the reward monumental." Tears. I could do Vail (I did Vail!). Good timing. Love one another.
Our family just returned from skiing. Good family time. What is skiing? On my own, that had to be the worst I skied in a few years. There was some ice. I couldn't pull things together. All I could think about was how I needed to not dig my shoulder into the ground, which only seemed to make me dig my shoulder into the ground worse. So I went tethered (always fixes my mental lapses) and did more advanced stuff and had fun. But skiing on my own? No way. Disappointment. Discouragement. My friend Charlie couldn't ski with me either. He wasn't even there the second day and he never said goodbye. What kind of ending is that? It hurt.
I returned home. There was a green envelope on our island, from the ADA (Americans with Disabilities Act) Center. I'm a network leader for them, so I answer questions on the ADA, give presentations, yada, yada, yada. It's this part of my life that I love. But what were they sending me? I opened it. It was a funny card, wishing me well on my surgery. Everyone there had signed it. Guess what? Sniff... yup - tears. Love one another.
If someone sends me something saying hey, if you need help, let me know, I like that - very thoughtful. But these cards - random ones just send to say we care about you - they really hit me. I am reminded that I am loved.
"I give you a new commandment, that you love one another. Just as I have loved you, you should love one another." John 13:34
Thanks be to God.
After one interval session, we all came up to the dining hall. The team came around me and handed me something, a note. A few years ago I had also visited Earlham College, a small Quaker liberal arts college - one of the 4 colleges I considered. They happened to also be in Kenyon's athletic conference and had noticed that I had disappeared from the running scene. In this small world, the coaches had talked, and the Earlham team, who I had met, sent me this note. They said their thoughts were with me and they wished me the best. It made me cry then and it makes me cry even today. Love one another.
This past summer I was training to handcycle up Vail Pass. I was getting up early to ride. I was exhausted. Work was really difficult. It seemed there was some finger-pointing occurring, and I was somehow a target. So I would come home exhausted.
One day I came home on one of my most exhausted days when I collapse and wonder how we're going to have dinner. That day there was a random letter waiting for me. It was from my high school cross-country coach, who didn't even know about my training for Vail. The card had a picture of a trail, similar to switchbacks we used to run in the mountains. It said "the climb may be steep, but the reward monumental." Tears. I could do Vail (I did Vail!). Good timing. Love one another.
Our family just returned from skiing. Good family time. What is skiing? On my own, that had to be the worst I skied in a few years. There was some ice. I couldn't pull things together. All I could think about was how I needed to not dig my shoulder into the ground, which only seemed to make me dig my shoulder into the ground worse. So I went tethered (always fixes my mental lapses) and did more advanced stuff and had fun. But skiing on my own? No way. Disappointment. Discouragement. My friend Charlie couldn't ski with me either. He wasn't even there the second day and he never said goodbye. What kind of ending is that? It hurt.
I returned home. There was a green envelope on our island, from the ADA (Americans with Disabilities Act) Center. I'm a network leader for them, so I answer questions on the ADA, give presentations, yada, yada, yada. It's this part of my life that I love. But what were they sending me? I opened it. It was a funny card, wishing me well on my surgery. Everyone there had signed it. Guess what? Sniff... yup - tears. Love one another.
If someone sends me something saying hey, if you need help, let me know, I like that - very thoughtful. But these cards - random ones just send to say we care about you - they really hit me. I am reminded that I am loved.
"I give you a new commandment, that you love one another. Just as I have loved you, you should love one another." John 13:34
Thanks be to God.
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