On falling, being held

Some people can say things so well. (My) Life with MS, and especially the last few weeks (the protection part), could be defined like this:

"If I had to name my disability, I would call it an unwillingness to fall ... This reluctance signals the mistrust of the central truth of the Christian gospel: life springs from death, not only at the last but also in the many little deaths along the way. When everything you count on for protection has failed, the Divine Presence does not fail. The hands are still there -- not promising to rescue, not promising to intervene -- promising only to hold you no matter how far you fall."

- Barbara Brown Taylor, from her book Leaving Church: A Memoir of Faith

Zap!

Random post...

Here we go again, back to the surgery debacle where the meds which control my leg spasms were at least cut in half due to whatever. And what followed was pretty much hell. For anyone who has had leg spasms, they hurt. They go away by standing / moving. When I couldn't do those things, I was in trouble. When I couldn't get my medicine which blocks the cramps a bit, I told the poor nurse, "well, this is going to be one hell of a night." And it was. I got back on all my medicines. I got to start walking again. But still, I had spasms in the morning (uncommon for me) and spasms in the afternoon (somewhat uncommon for me).

Enter acupuncture! I started this years ago and am not someone to believe in alternative medicine. Back then, I had afternoon spasms and would sit in meetings, hoping they would hold off. But acupuncture worked for those - they went away. I was still left with evening/night spasms, so if I go anywhere anytime past about 4, it's common to see my rip off my leg brace, move my leg around, massage my foot, etc. I imagine it's quite a site! But I can handle that. I just can't handle painful spasms that cause my legs to try to jump to the ceiling, all day.

Yesterday I went back to acupuncture, because just being back on my medicines clearly wasn't enough. This should have been filmed. Normally, these tiny needles are stuck in my feet and legs, and my feet and legs remain calm. But this time, touching my foot caused it to jump. Getting needles in the legs made them jump and convulse all over the place. And then I was left, needles in legs, for about 30 minutes. During this time, I watched legs alternate convulsing, back and forth, sometimes simultaneously. It seemed like pulling the devil out of the legs, or some stange medieval torture mechanism. And then I went home, completely exhausted.

And this morning? No spasms. I don't get how that worked. I love western medicine trying to explain eastern medicine. I try to have my acupuncturist explain eastern medicine to me and it makes sense, but I don't really get it. But I do get that, for me, it works. It doesn't solve MS - it doesn't make me walk any better. But it does make life liveable. And that is what I want.

So where does God play into all of this? Somewhere - I have no idea. Perhaps that whole "suffering produces endurance, and endurance produces character, and character produces hope, and hope does not disappoint." Hope can be seen in so many ways - now, a bit later, much later that I'll never know. But perhaps here, hope didn't disappoint. Scripture - read so many different ways at different times.

Thanks be to God for hope.

Chanty

I decided I was done playing the piano, but today it was just sitting there, inviting me to play. And there was the piece Chanty, which I played at my grandparents' small memorial services. But it wasn't good enough then - not like it used to sound (not full feeling in my fingers) - so that was the end.

But today I accepted that invitation to play Chanty again. And just like in the many years I took piano lessons, I was immersed. It's difficult to explain. I was the person who wasn't the best technically because of my smaller hands, but musically I would dive and lose myself. So there I was again.

Tonight, waiting for Lori to practice, I dove again. Then she appeared in a dance outfit and danced to Chanty. And then I asked her what she thought of the piece and what it meant to her. She said, "It's like a river or ocean. It starts slowly, then picks up, and then is very calm again at the end."

Yes, that's exactly what Chanty is. I may not hit all the notes, but I guess I can still convey the music. That is something that MS cannot take away - the ability to dive, to lose oneself, in something so beautiful.

Chanty.

Before and after

It's great to be home. I'm getting occupational therapy (OT) which mainly helps arms, but the goal is "functional," so this therapy helps to make sure you can function in your daily life. Today we did a bunch of exercises and I thought I was doing pretty well. But then we tried stand up, reach to get dish from cupboard, put dish on counter. Seems pretty basic. No - actually difficult, and OT was followed by a nap!

But regardless of the comeback I'm told there are differences in Beth. People say I seem to be doing so well, and I have to think I was miserable prior to what turned into minor surgery, still necessitating major comeback. This a bit of my before and after - much of the before was not realized until the after.

Before: Constant pain. I avoided going anywhere because doing anything hurt. I'm dependent on my shoulders.
After: There is pain, but it's different. I haven't gone anywhere because I haven't been cleared to drive, but I WANT to go places.

Before: I pretty much stopped cooking because reaching for anything hurt too much.
After: Now I'm working with OT to be able to reach things like plates and be able to cook again.

Before: Dave, my husband, was actually carrying me across the house due to pain.
After: I'm using a wheelchair for the first time in my house, but Dave doesn't have to carry me - good thing.

Before: I wasn't sure what exactly I should ask God, so I asked God to help me through whatever I faced.
After: I made it; God was there; the cross in front of me in the hospital was comforting.

Before: People told me I seemed really stressed. I was. The biggest stress was the anesthesia, and not knowing how I would react to it.
After: Well, I remember going to sleep before they even gave me the real anesthesia. But I woke up. I think that was my first comment: "I woke up!"

Before: I thought anesthesia was the biggest concern, followed by mobility.
After: I realized making sure my medication dosages were interpreted correctly should have been my biggest concern. I felt a desperate sense of "Believe me!" and wish I could somehow communicate to others to make sure, before entering a hospital, you not only tell people how much medicine you take, but when you take the medicine and how much you take each time.

Before: I was stressed about so many things that I didn't look around me.
After: I'm watching things, going outside, feeling the fresh air.

Before: Dependent on shoulders.
After: Working really hard to use my legs more when I stand. It's tiring!

Before: Strong faith.
After: Strong faith. I woke up. I am home.

Thanks be to God.

Stereotypes

They're everywhere. Everyone makes them. I suppose that's human nature (to make stereotypes, or assumptions, about people for whatever reason).

In the disability world, we try to knock down those stereotypes. Over the past week, people have assumed I don't work until it somehow comes up in conversation and then there's this sense of amazement.

Then we dive into stereotypes surrounding MS. Amazing assumptions are there - that because I have MS, I also have every symptom of MS. So I explain that no, MS affects my legs mostly. It affects everyone differently. And it's the same for whatever disease is out there - everyone is different, yet there are so many stereotypes.

I remember attending an MS workshop a long time ago, in Duluth MN, way back when I was still running. One of the sessions was on fatigue and a friend of mine, Tom, was the facilitator. One of the people with MS at the session started talking about being sick. I must have had my face scrunched tightly in a ball. Tom paused and said, "Beth, the word sick really seems to bother you." "Yes, I said. I don't perceive myself as sick. I perceive myself as having MS, and I have good times and times when I struggle. But when I think sick, I think of a cold, or something like that." So then, I do think there's a stereotype of people with MS being sick (I've heard it from others). But if I played into that, my life would be different. If I'm not sick, I can challenge myself more and carry on with life better. Works for me - maybe not for others. But the sick stereotype - I'm not a fan.

I was telling someone about the MS and employment stereotype yesterday. And she said, "it's like me and that Easter comment." "You're totally right," I said. She had been leaving a meeting and wished someone a happy Easter. The person gave her a strange look and said, "you celebrate Easter?!!" Her skin is darker - I forget her exact origin. But she goes to a Lutheran church like me. That was a jaw-dropping stereotype for me.

So I'm reminded - the stereotypes are not just there for disabilities. They are all over the place. And hopefully we can stop them, one at a time, against human nature, so we're more inclusive without thinking about it.

The baseball game

Rapid-fire entries - after this one I foresee a break from my computer for awhile...

This is a continuation of baseball season (an earlier entry - a few back) ... really paralleling baseball with my surgery, kind of. We have a baseball team that could be great, but was missing some links, and didn't have some key people, including a coach.

So, from the previous entry, we had an excellent pitcher who had tunnel vision, but he is an excellent pitcher. That's the orthopedic surgeon. He is incredibly awesome at what he does. It's been 5 days. I'm not on any pain medication. My shoulder hurts, but it's manageable. He did a fantastic job.

The catcher, or the person who is so good at coordinating things, is my rehab doctor. He is also the best. He found out I've been at an acute rehab hospital, and got me a message to call him. I don't know how he does this, but he totally "gets" Beth. So he said (after a stellar pep talk), "What do you think you need to do to get out of there?" (He knows this place was not the plan, and that I want to be home) So I said, "I need to be able to do all transfers independently." He replied, "That sounds reasonable. So as soon as YOU know you can do that, YOU can decide to leave." Something in the way he put all this really brought me around to see I was much closer than I thought. I discovered on my own, unknowingly breaking rules, that I could do all the transfers. And so yesterday, after an ordeal about breaking those rules, I decided I was ready to go home.

At Kaiser Permanente, my case manager, who I know through my rehab doctor (it seems I know so many people at Kaiser), supported this and arranged for home physical therapy and occupational therapy. She wasn't in the game previously, but I suppose she'd be the strong infielder.

And in the end, I became the coach, advocating all along the way.

So I could now insert all the negatives about the week, all the things that went so horribly wrong, but perhaps it is time to somehow move on. In real life, I am somewhat clinging to the negatives because there were so many and they hurt, they were potentially devastating. But things worked out. So I need to let go of them. Perhaps somehow hand them to God, even though I'm not there yet. Perhaps I need to spend time thinking of how God was with me through all of this. And I need to go home, find a bit of alone time and space, and cry. Crying can release so much - it's highly underrated.

So to end on a few more positive notes, there were people along the way who were the best (not part of the original team) ... a night nurse, a student nurse at the hospital. The rehab doctor at this rehab hospital who quickly was able to change my prescriptions back to what they were supposed to be. He knew this was critical. The main physician assistant here tried so hard to make me happy, to get my problems addressed, to get things ordered for me, even if it didn't work 100%. And then some of the nurses here have been great - they have put up with independent, stubborn Beth. Lastly, one physical therapist had me standing using parallel bars. She showed me that I have more leg muscles than I thought, and that perhaps I could relearn walking a bit, and strengthen some muscles I never realized I used for walking.

To end this game, it was a success in some strange, round-about way. Some people don't think I should leave quite yet. But there's been a small, consistent voice coming from the dugout. It says, "Mommy, I love you. Mommy, get better. Mommy, when are you coming home? Mommy, I miss you. Mommy, I want you home." That's a pretty convincing voice. And Dave, my husband, comes every day. I don't think, perhaps, I realized how much I love him, until he has walked through that door smiling. Lori and Dave clearly want me to quit coaching.

Home I go. Thanks be to God for being right with me through this game, and for perhaps showing me the importance of family more.

The Facebook thing...

I'll admit it. I'm addicted to my laptop, and to Facebook. I like to read what people are doing. I love that our whole neighborhood growing up reconnected. I posted our 2nd grade class picture - everyone found it - we all reminisced about elementary school. Facebook is addicting - I often spend too much time on it, aimlessly reading who is feeling lazy or old, and creating such entries myself.

This week we discussed social networking in a class I'm taking. And while people saw how things like Facebook allow people to completely waste as much time as they want, they also saw benefits - mostly professional.

What I have found is this: Facebook and other online resources are fantastic for people with disabilities (pwd). Networking for pwd has been documented - like this:
http://www.denverpost.com/search/ci_14752670

It is incredible. I have different circles of friends on Facebook, but pwd seem to be there in force. Maybe we're too tired to meet or something prevents us from meeting. I know I get exhausted and turn on Facebook as if I'm conversing with people. I find out about handcycle rides. My friends with disabilities join other sites and I join them too. All the info on Paralympics was there. People posted updates and photos of the Paralympics. Someone is doing an event and they let people know. Good links to articles are posted. We joke about things and I wonder if people who read the postings who do not have disabilities "get" the sarcasm we're tossing this way and that. Someone organizes a big ride and posts it as an event. So many of us are spread out, but we meet, and we begin to explore similaries (and differences). I tend to converse with people with spinal cord injuries, and a bit with people with MS. And if I have a question, I can reach out to someone via Facebook and I'll either get an answer, or get some resources.

Beyond Facebook, I'll find myself in the world of blogs. There are so many. Each one has an interesting point of view. They can be disease-specific, they can be religious, they can be non-disease specific, and on and on. And so it seems I then can make friends even across he globe.

I wish all the people I meet were right here. But they're spread everywhere, near and far. And we are brought together. And I wonder a bit about the phrase "where two or more are gathered" and worship. In a much different sense, can pwd who shift focus to religion somehow find their "two or more" gathering place online? So often, it seems a place where I find acceptance, understanding, and a sense of being together.

And yes, I still do need to close my laptop more often than I do :)

Live, Love, Laugh

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.

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!

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.

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.

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!

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!

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.