Tuesday, February 22, 2011

doubt and faith

In the still of the morning,
Legs are swung off the bed.
Each morning.
I sit, balanced.

Balance should give me faith
in me.
I didn't used to balance like this.
This is MS.
Each day is different.
But now I can balance.

And I hesitate.
Will my legs work when I rise?
I doubt.

Should I grip the dresser, as I used to do?
Or should I trust that my legs will hold me?
I hesitate, for how long?
I push up and my legs work,
without faith.
I am standing.

And yet
I do not doubt God,
I have faith in God,
that God will be with me
on my journey.

I doubt myself
and test how my legs work
because I do not have faith in me.

All of this
seems backward.
It seems I would have doubt
and lack faith
in God.

But I doubt
and lack faith
in me

not doubting,
having complete faith
that God is with me.


Saturday, February 19, 2011

Happy birthday Lori!

(Enter one doctor)
"No, you can't.
You need to do ..........
That's impossible."

(Enter my favorite rehab doc, months later)
Me: "I'm pregnant."

Him: "Congratulations."
He really meant it.

Him: "Go to Alaska. Have a great time.
Come back and we'll go from there.
You will be fine."

And so began Lori.

MS in chaos.

MS calmed.

Lori born. (Feb 20)

Symptoms of MS weren't as bad.

I tell her she is a miracle.

I think she is sick of hearing this.

But she is... a miracle.

Never say can't.

Start with some kind of "can" and go from there.

8 years old.

I wouldn't change a thing.

I always wanted a daughter.

She is a true gift.


Monday, February 14, 2011

To Love and Be Loved

Occasionally people say things that are so very basic, so simple - you may have heard them previously - yet they stick with you as you go through your life.

We were on a lift (skiing) and someone was talking about a relationship that seemed like ... well, it seemed like, given the people in it, it couldn't be "real" or it wasn't a relationship in the way one would traditionally think of a relationship. The volunteer who was with the instructor and me that day said, "everyone deserves to love and be loved."

That seems easy enough. But the instructor clearly was done with love. I think he said he was too old for it. So I thought there must be something... his cat died recently and he absolutely adored that cat. He couldn't express that, but you could feel it. Yet, the cat was gone, and he is not getting another cat. So I came up with it - his Harley. Yup - I think he loves his Harley (I also think, when he can't ride his Harley, he loves his monoski). Untraditional when one thinks of love.

There are many other untraditional people we love (or animals, or motorcycles, or whatever). What bothers me is that with some of these, we tend to judge them. I don't need to name them, because I think people know what they are. What seems to be most accepted is if two people are basically the same, one being a man and the other being a woman, and they are married, live in a house with a white picket fence, have 2 kids, etc. We laugh about the white picket fence, but I think it still exists. And that's ok too, because everyone deserves to love and be loved.

But these other, untraditional, loves - they're ok too. I think everyone does deserve to love and be loved, and I hope I don't judge.

So, very importantly, "The first duty of love is to listen." (Paul Tillich)

And also,

"And now faith, hope, and love abide, these three; and the greatest of these is love." - 1 Corinthians 13:13

Happy Valentine's Day.


Friday, February 11, 2011

Another year, same disease, different outcome

It's always a week that sneaks up and seems to say "gotcha" without warning, so there's something about it. It's a week where I'm not in a good mood, and I feel down, until today, because I remember knowing, and knowing was better than thinking I was imagining things. (Quotes from "One Maker" by James Hersch)

I've had MS for 21 years, and 18 years ago today I was diagnosed with MS.

"Leaf falling, river running, flower dying in the fall."

I remember the neurologist said at one visit, "it's an exciting time to have MS ... (pause) ... I mean ..." We both smiled. As far as neurologists go, he was my favorite - maybe because he didn't specialize in MS? He diagnosed me with lovely MS, with my good friend Kelley there, as I was in school in Ohio. He let me use his phone to call my parents who were in Colorado. Thank goodness for all the people who helped at Kenyon - that is, the people who knew - I asked that not everyone be told - and that was honored. So the cross-country team, an econ professor, and the pastor of the small church there (and a few other friends). And I got better for awhile - I started to run again - I ran for about 6 more years.

"Dead of winter, spring's coming. Who can understand it all?"

We prayed - the pastor, his secretary, and me, in the basement, and I felt God and that everything would be ok. And the story repeats each year. God told me that everything would be ok. That's because God is there along the journey, which has seemed long.

"Time moving, earth spinning. Another new beginning."

"One Spirit in the world surrounds us.
One Savior with his arms around us.
One Maker with a promise for them all."

And I pause here for my statement - God doesn't have this grand plan so that I get MS and someone else gets abused and another mass killing occurs. Our God is a good God. God gave us free choice. Evil happens. God is with us along the journey. God does not decide who gets what, and who wins a battle, who doesn't win. God doesn't say Beth can have MS because Beth can handle it. But God is with Beth along the way, and it is by faith that I have worked through much of these past 21 years.

"One Spirit, one Savior, one Maker for them all."

Nothing seemed to help me, things somewhat slowly broke, and much went unnoticed by me and others who wouldn't notice certain things. And then came Ampyra - really the first thing to come and help me. Other things help other people and though happy for them, I wondered why nothing worked for me. And the journey continued. Ampyra doesn't work for everyone - I don't know how long it will work for me - but this year has been a different year for my MS.

"One Spirit in the World surrounds us.
One Savior with his arms around us.
One Maker with a promise for them all."

No one knows where a journey will lead. Every year this day comes and it's a reminder - "gotcha - you are mine." But this year perhaps I play a "gotcha." 8 months without an attack, even though Ampyra isn't supposed to stop those.

"Gotcha" - life is better.
"Gotcha" - I've come a long way.

There is still such a disconnect from where I came when this all started. I realize I have come so far these past 6 months (I actually have been learning how to crawl!), and yet, to the outside world, it looks like things are difficult. Sometimes things are difficult, but nothing like they were. And I don't know where they will go, but God will be with me.

18 years. 17.5 of those years spent with nothing but some small hope. .5 years of a turn-around. God there along the way, through good and bad.

"One suffering, one crying, One back against the wall.
One living. One dying. One learning how to crawl.
One given in sorrow. Praying for a new tomorrow."

"One Spirit, One Savior, One Maker for us all."


Thursday, February 3, 2011

Celebrate Living

Someone wrote on "Celebrate Walking," so I informed people that it wasn't very inclusive of people who still did things but can't walk. As per the 2000 Census, 21.2 million, or 8.2 percent of the population has a limit to basic physical activity, like walking. (http://www.census.gov/prod/2003pubs/c2kbr-17.pdf) I "walked" into that one! "Well Beth, why don't you write an alternative then?" And so this would be the first draft, like the rest of the posts here. Let's see how it goes.

I thought I would go with the title "Celebrate Movement." But then Jean Ann, my former track coach left this world last week due to ALS, or Lou Gehrig's disease. Jean Ann could hardly move. But inside, Jean Ann was still there, sending funny emails only 5 days before she left.

Her brother said, "even in the midst of the worst possible thing that could happen, we know life... And we can live also ... not waiting until tomorrow ... but now. Abundantly and full and joyful. Even in the midst of death, we can live."

Celebrate living. Perhaps some people with (physical) disabilities can walk. Perhaps that walk is limited and a cane, crutches, or a walker is/are used. Perhaps walking is celebrated in the sense of being able to walk, even if it is only a few steps. Perhaps it is celebrated with a new medicine designed to help walking with Multiple Sclerosis - maybe it's still a limited walk, but it's better than it was.

Celebrate living. Perhaps people with (physical) disabilities use wheelchairs, power chairs, or scooters. Perhaps these devices are used all the time. Perhaps they are used for distance and the person can walk sometimes. Perhaps we should celebrate rolling - it gives more independence, because wheels allow people to go places. People can go to the mall! People are not stuck at home.

Celebrate living. People with disabilities can experience extreme fatigue. This may keep some at home. From home, the online medical record can be accessed, the physician's office can be called, the physician can be emailed, or medicines can be ordered online (and delivered via mail).

Celebrate living. It can take a lot if energy to go to a medical office - getting out of a car, coming and going. But our flu clinics mean people never have to get out of the car. People can go to a drive-through clinic, roll down the window, and stick out their arm for a shot.

Celebrate living. There isn't a need to walk when there is adaptive skiing (allowing a person to sit), handcycling (a bike powered by arms), accessible ropes courses, accessible anything. There are many activities. If a person can lift their head, start there - it's a sit-up - celebrate that.

Celebrate living. Jean Ann kept a very active life on the Internet by using her eyes to type - many jokes, frustration, happiness. She exemplified how to celebrate life.

Now, what have I missed in draft 1?