Saturday, November 17, 2012

Why (or why not) church?

Dear God,

Last Sunday during adult education, we talked about why people go to church, or why they don't.  It was interesting to hear perceptions on why people choose whether or not to go.  I said that one reason I go is because, during the most difficult parts of my life, it (church) has somehow been the most help.  But it's more than that. 

It's interesting to hear people talk about youth in church, especially confirmation, and some people think we should require more to be confirmed - "it's too easy."  I think why?  Sometimes, if it is so much work, will all those teens really want to keep coming back when they are done?  I don't know.

When I was a teen, I saw my friends who were part of the same (big) church.  They did a lot together - it seemed exciting.  So God, given that my grandfather was a minister, why didn't I get that?  My friends went through a lot for confirmation and I didn't.  I read a book, with my brother, and then we talked with the minister about it.  It was a book for adults, with 3 main sections - the 2 Creeds and the Lord's Prayer.  It didn't make sense to me and I would fall asleep reading.  My brother had great conversations with the minister about it.  Occasionally my opinion (which I didn't have, because I didn't understand the book) was asked and that was it.  And God, while I'm at it here, I really feel like if I hadn't pushed it, if I hadn't asked to be confirmed, nothing would have happened.  And for me, confirmation was just about being able to receive communion.  That's why I let my daughter receive communion when she expressed interest.  This is somewhat of a tangent.  But God, given this history of not a lot being required to be confirmed, you'd think church wouldn't be important to me.  But it was (and is).  My godparents came to my confirmation and that was so important to me.  And then I continued to be religious throughout high school, whether or not my family went to church or not.  So God, since everyone seems to have someone who influenced their faith life perhaps at this stage, what was happening to me?  It really confuses me, and in a strange way, I suppose I'm a bit angry that I can't say, "Why yes!  It was this person who really influenced my faith and is why I go to church today."  There's really nothing other than me wanting to see my grandfather's Bible, knowing he baptized me, etc.  There was intrigue there.

Then people talk about after confirmation as the time young adults leave church, and I'm thinking about college.  They also talk about people in their 20s and why they don't go to church, in general.  Again, I'm unique. I went to college where almost no one went to church, but I went most weeks, with this background of...  not much.  When I was diagnosed with MS, one of my first thoughts out of nowhere was wanting to meet with the minister on campus.  With the church secretary, the three of us prayed together in the basement of the church and I felt this strange presence of something.  Was that you, God?  Even when I went to church growing up, we never learned that there might be this strange sense somedayI didn't grow up with the background of God having an actual presence; in fact, I grew up in an environment where that wasn't a thought.  I then went to church more often because it seemed natural.  I did a bible study at the minister's house, and watched his small farm when his family went on vacation.

I moved to Minnesota and went to a church there, in my 20s.  No one really seemed to pay attention to someone in their 20s in church, and when I moved back to Colorado and started "church shopping," I found the same thing - no one noticed me - and that didn't bother me because I was looking at many different churches.  At one church, people waved their hands in the air, seemed to make a political statement, and I was gone.  At another small church, I darted out right after communion because it seemed small.  I wanted to find a place where there was a group of people my age.  I didn't find such a place.  I asked at one church and was told I was actually too young - their singles group was people in their 30s.  Then I found the church where I currently go.  I don't remember anyone meeting me there either.  I went to the new member orientation once, then stopped, and then came back a few months later.  And now I go every week.

So God, why church?  Over time, the church where I go has become like family.  Some people there annoy me - you don't pick your family - but most people are awesome.  If I don't go to church, things just don't seem quite right.  When I don't want to go because something bad is going on in my life, it never fails that church comes and turns things around.  Why, God?  That doesn't make any sense.

So I now go to church every week with my daughter.  I do other things with the church.  I can't imagine no church - seems there would be a great void.

Why church?  I don't know.  It's confusing, God, how it happened that I go to church regularly.  I wonder if I'll ever be able to sort out why I became a person who goes to church every week.



Monday, November 12, 2012

Stuck in "Park"

Life has been so much better for me since Ampyra entered it over 2 years ago.  There are downsides - I get leg spasms that are worse, and which are a message for me to walk.  But seemingly nothing really has gone physically wrong - I didn't get any sicknesses that other people would get - I didn't get any of Lori's sicknesses.  I have had milk and dairy cravings.  But I was to the point that I thought I might be immune to everything. 

But then other chaos from the world finally caught up with me, grabbed me, and I was caught.  The chaos forced my body to find the limit - the limit not even Ampyra could conquer.  The crud hit me, fast and furious.

It hit on a day I had gone to help some physical therapy (PT) students.  There were 2 sessions - one in the morning and one in the afternoon.  In the morning I was fine - to others I might have not looked good at all, but I have come a long way.  In the afternoon, I suddenly thought the room was hot.  I was with a different group of PT students and it seemed nothing was working and my fingers and feet were numb (usually this means the room is too hot for me).  By the time I went back to my van, I could barely get in.  And by the time I picked up my daughter and was handed the pen to sign her out of the after-school program, the realization hit me that I couldn't grip the pen and couldn't write.  We went home and I couldn't get myself on our lift (I walk onto the lift, but I couldn't lift my foot).  My daughter brought a wheelchair behind me and I sat, and she pushed me onto the lift.  In a matter of hours, a mild fever rendered me completely useless.  That is MS - the surprises come from seemingly nowhere and are never fun.  Scary?  Well, not with a fever - it's more of a feeling of breaking things into steps, but the steps are so small - get inside, find the Tylenol - getting Tylenol, as silly as it may seem, is like winning a big trophy.

Immediately, I started taking Tylenol.  That evening and night never seemed to end, with my body alternating between hot and cold, no feeling in my hands, legs, or feet.  The next morning I did try to get up.  I had put my wheelchair right next to the bed (usually it's in a different room), and I made it there.  To get the Tylenol, I had to go to the floor and drag myself to it.  I didn't wake up Dave because I guess I am just that stubborn and I could handle this.  I took the day off of work - I don't do that (I don't really get sick), and I just sat, taking Tylenol every 4 hours.

Next I got a huge cold.  I went to work for 2 days, came home, and collapsed.  I was very sick.  On one of those days I went to a couch in our sunroom and put my legs up.  I couldn't stop coughing (a dry cough) and had to do a series of relaxation strategies to stop.  I fell asleep.  When I woke up I didn't want to move.  An hour later I sat up. God, really, is this ever going to end?  And then, would my legs feel better?

There were strange feelings in my legs through all of this.  I recall wondering what my usual self feels like.  Ampyra was still flowing, but I wasn't walking.  I had the strange sensation that I suppose would be like if a person got in their car, kept the car in "Park," and then pushed halfway on the gas pedal and kept it going.  The car wants to go, but it's in "Park."  Nothing can take it out of "Park."  What a waste.  The person would sit there in the car, knowing it was a complete waste, but still keeping that gas pedal down, going nowhere, wondering if at some point, they could get out of "Park" and go somewhere.

Almost as quickly as I was hit by this thing, I recovered.  On Friday, I decided to take a sick day because I didn't feel I was pulling through.  I felt like I was starting each day at 50% and finishing each day like the car in Park with the gas going.  So Friday, I rested.  I couldn't sleep much, but I could move a bit.  On Friday, I stood straight for the first time and it felt so good, like I was still in Park but I took off the gas pedal.  By Friday night I was walking some and on Saturday morning, I stood up and felt like I could move.  By Monday, I was back at work, not quite doing what I had, but close.  The car was out of Park.  If I pushed too much, I would feel hot again, which was strange.

Sometimes I don't know why I decide to write about various things, and this would be one of those times.  Perhaps it's so I can try to explain how things can be different for someone like me - if I'm a little sick, it might be different than for someone else.  A little fever below 100 degrees results in nothing working.  At the same time, I can "pop" back, and I think Ampyra helps with that.

In the next week, I was back to working on standing straight, making my legs go straighter when I walk, etc.

Faith is only a small part of this.  I remember sitting on the couch and thinking, God, you have got to be kidding me.  When going through motions of survival with MS and another sickness, it's a thought process of "I need to be there," "I need to move my legs there," "I need Tylenol." And then "thank you, God" or "you have got to be kidding me God," or "God, am I going to make it through this?"

There were no answers from God.  But faith doesn't always need answers.  Faith is sometimes, in the middle of chaos, where we can find


Saturday, November 3, 2012

Poking and prodding

About a week ago I got to go spend some time with students learning to be physical therapists (PTs).  My therapist had asked if I wanted to do this and I thought it sounded neat - a way to educate using real patients, because for awhile, PT students may not get a lot of interaction with patients, and they have to practice various tests on themselves.

3 students were assigned to me in the morning and then 3 in the afternoon.  They did various tests on me to do things like check reflexes, strength, and range of motion.  It was interesting to watch as they had not done much of this previously, and had not been exposed to MS, so I found myself explaining Ampyra in detail to them.

Several questions they had were interesting:

"Have you fallen much lately?"  To this I asked them to define a fall.  I think people think of falling as such an easy thing to understand.  But really, it's not that simple.  With my MS, I know when I am getting tired, and I might actually plan to sit somewhere, which I suppose could be judged as a fall.  Their definition was the unexpected event, not planned at all.  This rarely happens because I can work though things so that instead of falling, I am sitting, purposely.

"Is having a progressive disease really hard emotionally?"  That's a loaded question!  I think perhaps people look at things totally differently from the outside.  Since Ampyra, I've been improving physically, so I don't feel that MS is draining me emotionally.  In fact, being on Ampyra has done the opposite for me.  The problem with seeing students 1 time is they haven't how far I have come.  But the main answer to this question, is that often it is not the disease that is emotionally draining as much as factors outside the disease that drive stress, create an emotional drain, and impact the disease.  These factors are part of everyday life - home, work, etc.  It's the external factors that are more draining than the actual disease itself.

"How do you get out of bed in the morning?"  This was a question asked in the afternoon.  Something strange happened that day.  In the morning I felt fine.  In the afternoon, the room felt hot.  My body felt like it was going numb.  I was supposed to be rolling on and off a mat, which was not like my bed, but apparently the PT students thought it was enough like a bed to wonder how I managed.  They also wondered if I had a grab bar to help get out of bed.  Wow - did I look that bad?  I don't have trouble getting in and out of bed like they were thinking.

What I chose to do was to explain something about MS to them.  Someone with MS may come to physical therapy and perhaps at some point they may want help with something like a bed.  But a neurologist said it best when he said, "There's one thing everyone who comes into my office with MS wants and that is to walk."  That's it.  Yes, we want to move around our houses, get in and out of bed, have a life.  But when it really comes down to what is most important, I think we just want to walk.

As I finished that day and took a real downhill spiral into an evil fever and cold, I thought about the day and whether I would want to do something like that again.  And I surprised myself.  While always wanting to help people, my "calling" is not to go and provide education in the form of being poked and prodded by students.  To me, that points out everything that is wrong, rather than all that is right.  I can educate students on what people with MS really want, and get them past MS being the emotional driver (because the emotional drivers are external to MS many times), but something about doing that in this context didn't work for me.

A big part of it is all the poking and prodding I experienced on the way to diagnosis.  I was diagnosed at a teaching hospital and went through so many tests at an age when most kids are in college and learning to be independent.  After college, I worked at another teaching hospital where there was more poking and prodding.  So educating the PT students somehow brought back memories of trying to figure out what was wrong with me, the frustration of all the various tests done again, and again, and again.  For me, I've been there, done that, and am moving on.

Right after I was diagnosed, I went to see the Pastor at our college.  That was, I suppose, the beginning of the end of the poking and prodding.  Now that I had a diagnosis, one "treatment" was talking and praying with him, and there was no poking and prodding.  And from there, life could continue.

Many people with MS go through yearly MRIs and I think they get poked on a regular basis, but I have found ways to cut back on that.  These last 2 years, I have really been able to look forward, to focus on the positive, and that's the way I'd like to continue.

Kudos to people who can help PT students on a regular basis. I suppose we all have our different, unique gifts we can offer to educate people on so many things, and the experience of working with PT students for me was valuable in showing me there are many others areas in which to focus.