Trying to understand the misunderstood

People seem a bit amazed that the death of Michael Jackson saddened me. He was one who was misunderstood, I think, and I'll never know him, but I can make things up...

- He was such a success, but he was lonely, and as a child, his father had no compassion and pushed him too hard.

- Music meant so much to him. People who knew him said how talking with him could be a bit strange until he started talking about his music. His music was addictive.

- We'll never know if he abused children. I don't believe he did, but since no one knows, we shouldn't judge him for it.

- He was a great father. His kids loved him and will miss him.

- He wanted to see what the average life was like so much that a grocery store opened at night just for him and his family to experience going to the grocery store.

- He had events in his life which caused him chronic pain and people will say he was a drug addict and judge him for that. Have those people experienced chronic pain? There are nights I wake up in so much pain from leg cramps that I must go sit in a chair to calm them down. It's horrible. I can see how someone could become addicted. I think there needs to be more compassion surrounding pain.

So, I thank God for my life, that I don't have addictions to pain killers, and that I was addicted to Michael Jackson's music. May he rest in peace.

Finish it

Today we had a lesson from 2 Corinthians. Of course, though I shouldn't, I tend to apply these things to my personal life. And since I was reading, I was paying more attention. The lesson to me, in part, was about the fact that although I might not be the best at something--if it is something where I have a passion, then that is most important, and so I should finish it. I related it back to my Masters which, if I do finish, will be in Public Affairs.

People ask me when I will be done, thinking I must almost be there. But I'm only halfway there and it seems like such a slow process. I love almost every class I've taken and have learned so much. I don't know exactly how I will use it when I'm done, but I think teaching in some way could make me happy. That must be because my parents are/were both Professors. Now I'm on a tangent.

This takes forever because it took me forever to define this passion. Then I have a family, a full-time job, and the desire to remain athletic. And then there's having MS--probably the biggest slowdown mechanism. But today was somewhat confirming--yes, finish it. I may not be the best or the fastest at getting it done. But with the passion driving it, I should finish.

Thanks be to God for helping me find the passion, and for in some small way, speaking to me today and telling me to finish it.

What do you really, really want?

So much has been happening in life that I haven't had time for this "diary."

This week I listened to a session from a National Quality Conference, video-conferenced from California. The physician who talked discussed having the patient at the center of care (nothing about us without us concept). We then went through an exercise, after which he gave his answers, making us all re-think ours. So here are the questions with my new answers.

What do you want (think healthcare)?
I want to drive my own care if I can, but I want a doctor who listens, is empathic, encouraging, and tolerates my paranoias.

What do you really want (here he started deviating)?
I really want to be able to continue to be an athlete.

What do you really, really want (the dream)?
I want to be able to run again.

Sometimes we never get what we want, but we fumble through life just the same, and to put it in some kind of religious context, God helps us through it all, the good and the bad.

Inclusion at its best

Today was a great day. I kept wondering if I should go to church or rest, so today I went. Threw on a shirt and thought it really doesn't look my best, but oh well! Off we went! And then we were there and everyone said hello. Everyone wanted to help if I wanted to be pushed in my walker. Anf if I didn't, that was respected as well. Then there was the sermon and I don't remember most of it, but I do remember the pastor saying the times when you don't feel your best are the times you should get to church. Then I knew I was in the right place and it felt like home.

This afternoon I went to a graduation party for someone at my church. They opened part of their fence, had me drive up it, onto their lawn, and then wheeled me up and into their house. It was so awesome. And I didn't have to ask--they just knew.

And why is that? When I don't ask, people know--it's certain people. When I do ask (the 1 time--see below), I am told no. I saw a quote from Gandhi recently: "First they ignore you, then they laugh at you, then they fight you, then you win." It's not about winning, but I like the quote. What I like better is not having to be ignored or laughed at, and not having to fight. What I like is what happened today--beautiful people helping because they just do--they care.

Thanks be to God for those people who care.

Helpless

MS is exhausting. It's been an exhausting week. And it has ended with an answer from my daughter's school that they will not help me. No way. Nope. Not going to happen. Never.

When I have an MS attack, or a bad MS day, I am stranded at home. I'm exhausted. I may not be able to walk or even stand. The last thing I should do is attempt to leave the house to pick my daughter up. So I have her take the bus. Then the neighbors can help her get home. But we're in year-round school, so the neighbors are not always home. I requested my daughter be put on the same schedule as the neighbors so there would always be someone there for her. I was told my request doesn't fall under the ADA (but it does) in a letter today. And then I fell apart.

It seems no one cares about our safety. It seems no one even wants to understand this disease. It seems no one realizes the uncertainty MS brings to one's life. It seems no one cares if I am lying on the floor of my garage unable to move, and my daughter is who knows where. And no on wants to help.

Who can help? I've now contacted the Colorado Cross Disability Coalition and the MS Society. I sent an email to the department of education (federal). I put a post on Facebook. I was having so much fun (not really) that I also sent an email to the president and my 2 state senators. And will anyone help? I am very much doubting it.

Can God help? How?

When no one is watching...

When no one is watching the person with MS, a "sequence of unfortunate events" can be devastating, but is anyone watching in the end? Consider the events:

- My daughter, Lori, finally diagnosed with eColi after a fever and tummy ache. I was at the doctor with her and got to hold her through all the tests. I am grateful.

- The project at work. I think I put everything into that--too much. No one was helping, and I did ask for help from multiple places. And in the end, it's not what was wanted, but there was no help. Now there is help from those who wouldn't give it when I asked. It's funny how that works.

- In the midst of that, there were the unfortunate events surrounding me. The above causes stress, and stress is not good for MS. So over the last week, I felt it coming, my legs getting weak, me getting tired but pushing on. Somehow I didn't let things get to the point where I hurt myself, but I could no longer stand up. There was nothing there.

I called my doctor. I think he somehow understands. He doesn't question why this might have happened so soon after the last attack. I think he may see it often--the economy and stress. MS triggers.

And who is watching? I think God is, somehow. I know I need to rest, and I know I need to do some things over the next 2 weeks. I don't see how that will happen. But I hope that God is there leading me. Actually I know God is there. Maybe the question is whether or not I will listen.

Serving

It is interesting to me the common stereotypes people who are not religious have of people who are religious. I've been called "one of those religious people" and wonder what that means. Today I really wondered.

Today our church was a site for a popular health fair, used largely by people without insurance. I volunteered and thought a few other people might do the same. I came to the church and EVERYONE from church was volunteering1 It was better than the turnout on any Sunday! I don't think the pastor appreciated it when I told him my observation. And we didn't wave any religious flags--we just did community service. Our church members do a ton of that without waving any religious flags.

So it got me to thinking more about the "you religious types" comments. Obviously people don't see what we do. Yes, we go to church. We form a community. It's support. It can and does feel like family. And we reach to the community. It seems a part of who we are.

And thanks be to God for that.