What I think He was thinking

Did you, as a parent, ever make your child do something because you knew it would be good for her? Did she glare daggers at you while she was doing it?

I've been that child.

Did you, as a parent, ever let your child attempt something that you knew she couldn’t do, rather than tell her she couldn’t?

I’ve been that kid, too.

So every day for 15 months I prayed, on my way to work, that God would give me strength and energy, and that I would represent Him well in everything I did. I reminded myself that I wanted to be God’s instrument, in spite of my exhaustion.

I started skipping my basic work preparation steps – make-up, hair, some days even brushing my teeth, just to stay in bed as long as possible and still be on time for a job that gave me very little satisfaction. I didn’t have much interaction with coworkers and advancing beyond this entry-level job was looking less and less likely every day. I tried to maintain a positive attitude at work (God isn’t glorified by a nasty one), and it seemed I had the respect of my coworkers and even superiors. But I was so angry to be literally killing myself for so little.

As any hopes for promotion continued melting away, my daily prayers started betraying my bitterness (like He didn’t already know). I told God more than once that I couldn’t wait to be chagrinned about my bad attitude for having to endure this challenge. I kept reminding myself that He had a reason, but told Him it’d have to be really good!

Then the wheels fell off. I started calling in every day, due to vertigo and all the other fun caused by the plaques in my brain. After a week, my supervisor called me, and while I was preparing myself for the dismissal announcement, she explained that I was now eligible for Short Term Disability – a benefit I had heard of but knew nothing about. She gave the phone number to call, and a few weeks later I started collecting a portion of my regular pay – enough to keep rent paid at least. Wow. I didn’t expect that!

And, since I had health insurance, I visited my doctor and had blood work done that showed low B12 levels – at least part of the reason I couldn’t think. The health insurance also permitted me to have physical and occupational therapists into my place – providing tips and aids to help my day-to-day living.

After six months, I was notified that the short-term disability was expiring, but with a little info from my doctor’s office, I was approved for long-term disability – something that will not end!  I was blown away.

I spent many of my working years as a contractor getting to do some really cool things – but didn’t have benefits. Here in my late forties I took a menial job for a large corporation, and frankly kept asking “WHY?” Disability insurance, who knew? In addition, my disability request through Social Security was approved faster because there was documentation that I couldn’t work.

 

Perhaps most importantly, I proved to myself that I could no longer work, which helped me release some of the dreams and goals I held for myself. Ah, the warmth of a good, humbling chagrin. I get it now. Thank you, God.

Chagrinned pt Deux

My dream job ended in January of 2009. I chose to see it as a blessing as my dad was in his last days. I had enough money to live on, so I fully turned my attention to my parents, grateful that I could. Dad passed away March 19^th, 2009, and those two months were precious and beautiful.

Of course, the MS really flared during this time and with the Michigan economy the way it was, I couldn’t find any contract work. In February of 2010 a friend told me about a part-time job in a call center – a major step down from my writing work – but something. This job would begin in April, but as I had gone through my savings, I figured I’d make it work, with God’s help, until I got my first paycheck.

On my way to the interview I prayed that God would keep the MS from being very apparent, and help me to have energy for the interview. I also prayed that He would do something that was all HIM. I was thinking maybe He’d connect me with someone who needed a writer, or perhaps introduce me to a man; just something that was totally a God thing.

I was able to walk into the building without stumbling, phew! I was meeting with my friend for the first part of the interview, and almost the first thing out of her mouth was “We have a full-time position that would start on Monday (this was Friday). I know you were thinking part-time, but we really need this position filled. Would you consider full-time?” Well, that sure came out of the blue - perhaps a God thing!

I took the full-time job, claiming that line in the song “I am weak but He is strong.” I was frustrated that I would be exhausting myself for an entry level position, but I was grateful to get paychecks and to have insurance for the first time in eight years.  

 

There was very little face-to-face interaction at work, and since I was working 40 hours, I had to cut doing anything else, including even going to dinner with my extended family. Oh, and the one-way walk from the handicapped parking to my desk was a quarter of a mile! I was lonely and exhausted, and I started asking why.

All I did was go to work, come home and go to bed. I tried to look at the work as an opportunity to bless the people I would speak with on the phone, but I noticed that I wasn’t absorbing new information the way I always had. I blamed the exhaustion, but it burned that I wasn’t performing the way I was used to and even finished the first 9 months as a “partially meets” employee, which meant I wouldn’t get a raise, and was ineligible for promotion. All for a quarter of the income I had working 20 hours a week as a contractor. Seriously, why?

In my prayers, I told God that I was looking forward to my chagrinned moment – discovering what beautiful good there was as a result of it all. Well, it was on it's way!

Chagrinned

Chagrin: a feeling of vexation marked by disappointment or humiliation

I discovered I couldn’t take “the pill” in my early twenties. I was understandably angry about it – the last thing someone wants to worry about is how to make sure she doesn’t have a larger family than she and her husband could feed. But the pill actually made me afraid of my own behavior, so I walked away from it, lest I actually earn the moniker “homicidal maniac.” What a pain!

Fast forward to a summer day when I was 36, recovering from a surgery that rid me of ovarian cancer, thinking about how fortunate I was because it was “half the size that it is normally when it’s found” per the doctor. It was stage 1 – hadn’t gone into the lymph nodes or anywhere else. The type of cancer I had is resistant to chemo-therapy and radiation.

Reliving the path that got me to that day, I thought about one doctor who blamed my female trouble on the emotional upheaval of the end of my marriage, and the second one (a year later) who recommended I go on the pill as a possible remedy the situation, if I gave it six months. I told him that I was a homicidal maniac on the pill and couldn’t take it. Instead, two months later I was reeling from the thought that my body had turned against me so secretly and how my world had once again been knocked off its axis, and how I’d still have cancer if I could have taken the pill.

Then I thought “Wait a minute: Who made me a homicidal maniac on the birth control pill?” I had spent so much time frustrated that I couldn’t control my reproduction the way I wanted, and now I knew why. I was surprised, but God is never surprised. That was my chagrinned moment. The “oh, I’m not really in charge of it all, there are things I do not and cannot know” moment.  I was again humbled by my inadequacy, feeling like the kid who’d just confidently shouted the wrong answer in 7^th grade.

It was wonderful – I just sat there, red-faced, and so thankfully chagrinned. I thought about all the time I’d spent angry at my inconvenience, and how the One who loves me most knew my feelings all that time, like an experienced parent lets his child be angry about taking a nap, and still puts her down for one. God is not a guilt-ridden, insecure parent – He knows each individual’s needs and confidently provides for them, whether or not He’s liked for it.

Since then, whenever my life is miserable and I’m at the end of myself, I kind of look forward to my chagrinned moment – because I know that God is working something out for my good. I’ll tell you about my next big "chagrinned moment" and how it was another real God Thing next time!

 

 

 

My relationship with God

I’ve been working on my next blog post for weeks now, and it just wasn’t coming together – too circuitous and detailed and confusing. My goal is clear enough – I want to share all the God Things that have happened since my health turned, they are vast and so perfect. But each attempt was fraught with problems. Finally, with prayer, God showed me I really need to tell more about my relationship with Him, first; then the details of the past year and a half will make more sense.

I asked Jesus into my heart when I was about 11 years old, but retained control over my own decisions until I was in my mid-twenties. See, I thought a good Christian used the gifts that God gave her to take control of the details and make good choices, so as not to bother Him with minor stuff. My job was to make my plan, present it to God to get His rubber stamp “OK,” and then carry it out. If I thought what He wanted me to do was obvious, I just did it.  If I thought He wouldn’t be real keen on my plan, I just didn’t mention it to Him.

It was during the execution of one of those unmentionable things that I first heard that still, small voice, clear as day. It reminded me of the one time my grandfather corrected me. I knew he loved me unconditionally, but His corrective words made me wither in shame. That’s when I learned that I didn’t have to tell Him my plan in order for Him to know what I was doing. Still, I thought I shouldn’t bother Him with things I could do on my own.

I will never forget the night, years after that corrective voice, when I went to Him to confess that there was nothing I could do about the mess I was in, and apologetically asked for His assistance. The next morning, though nothing in my reality had changed, I had the “peace that passes understanding.”  I knew that things would work out somehow, and they did. I also internalized the meaning of those four words from that fun old song.

 

It was still a long time before I really understood that God wants us to bring everything to Him first. He isn't like a school teacher who encourages students to work on problems alone before bothering her and seeking assistance. Standing on your own and trying to be independent is the opposite of what God wants from us!

More later, but in the meantime, take care of yourself by looking for the God Things in your life – you might be surprised to see how much God cares about you!

A brief synopsis of MS in my life...

So I’ve told you a little about how all this started last year, but I thought I’d share a piece I submitted to the National MS Society about a month ago for a contest they were holding. I’m proud to say I was a finalist, but didn’t make the top five. Since I didn’t, I can share this in my blog!

Do you remember being 17 years old, and the plans you had for yourself, everything you would do when you were finally in control of your life? My plan was to marry well and throw parties.

Then I was diagnosed with Muscular Dystrophy. Six months later the diagnosis was reversed. I heard MS the first time when I was 31, when a second neurologist tested me for it, but still didn’t solidify a diagnosis. I’ve spent years denying how I felt and “soldiering on,” wondering why I couldn’t do all the things my friends did in a day, and so did my husband. We eventually divorced.

With no diagnosis, I doubted myself, and denied what my body was saying.  When I was told I indeed had Relapsing Remitting MS at 41, and I felt vindicated and relieved.  I learned the fatigue I have always felt is part of MS.

The fatigue cost me my job, and I applied for disability through Social Security. I was told I’d be denied but then to fight it. The attorney I consulted told me I would lose because I was too young. “Okay,” I thought, “I’ll just ignore myself some more.”

I worked until I could literally work no longer – last year. An MRI confirmed that I have graduated to Secondary Progressive MS with relapses – up to 80% of people with RRMS do. I was measured for a wheelchair, and I got a walker to use around home.

I applied for disability again, and this time I was approved. The government finally acknowledged my reality – now I could, too. But there is no work, my children are grown – how, in this world that promotes the notion that the best people are the “human doings,” do I matter at all?

Well, I am blessed to know I am a child of God.  I know that I am precious in His sight, so the world’s view of me matters less than it once did.  I can truly assess how I’m feeling, physically and mentally, and do what is best for me for that day. My goal every day is to “represent” well.

I have stopped thinking I “must” do anything to earn the “right” to take care of myself. I still sometimes stubbornly do things, and then I pay for it!  The key for me has been to accept myself and strive to stay in my new reality, with grace. Of course there is grief for things I wanted to do and probably never will. The nice thing is that I don’t have to deny how I am. Some days I can do some writing, and some days showering is my big “tah-dah.”  Many days, I feel like all I can say is that I grew my hair and finger nails.

 
I never dreamt I’d be divorced and disabled, living on a quarter of what I once made, but I couldn’t control those things. I do still control my attitude and the light I shine on others, and I’ll do my best at that for the rest of my days.

Oh man - July 17, 2011

Have you ever used TV commercials to identify with your life situation?

I am using commercials to remind myself of my new situation, the way I seem to have done all my life. In the mid 80’s it was the late night Burger King commercial with the “shall we?” look at my husband, followed by the immediate memory that the baby was sleeping – we were new parents and couldn’t flee the house on a whim… I was a little surprised and resentful, followed by guilt, of course.

By the late 80’s it was the tampon commercial where the woman is talking about what she told her daughter, which prodded me to think “I’ll tell my daughter…” followed by the realization that I won’t have a daughter…Oh man, I cried! Then I reminded myself that I had 2 healthy, beautiful little boys and was blessed, and that God knew what I needed. Still, it hurt.

And now, the Buick LaCrosse commercial that generated the thought that maybe I’ll win the lottery and get one, the idea I’ve had for years; followed by remembering that I gave my car away because my legs don’t work anymore. Oh yeah, there aren’t going to be any new cars. If I win the lottery, I’ll hire a car service.

I walk within my apartment – short distances with walls and tables to hold on to. I walk past my wheelchair – the one prescribed by my Neurologist and tailored to my size. It just doesn’t seem very convenient to use, but it has felt good when I’ve used it. But how do I carry things from the kitchen when I’m in the chair? Then there’s the folding table I put up by myself a few weeks – OK, maybe a month ago, that I now have no hope of taking down by myself. It’s removal would make the chair easier to use when I’m not carrying anything. And, I’m moving to a first floor unit to accommodate the illness. How do I feel about that? I don’t know what to think or how I feel. It’s all too much to absorb right now, maybe because my B12 is so low. The doctor told me to take twice the recommended amount!   

I’m reminded again of that little girl with another bout of tonsillitis wondering if it was always going to be like this. My mom would assure that it would pass, and it did, and I was always so relieved. Now, with the legs, I’m again wondering if it will always be this way. Unfortunately, with MS, no one knows for sure. There is no reassurance about what my body is going to do. The blessings are great, though – my family and my God. Someday I’ll make a list of all the “God things” I’ve witnessed since June 21^st.

What am I supposed to be doing or planning with these legs and feet? I realized this week that my feet don’t work right. The feet don’t go off the ground the normal way. Who knew feet lift off the ground even just walking?  Well, now I know they do, or in my case, don’t. That would explain why I trip on throw rugs. I shuffle my feet the way a teenager does when his shoes are too big or aren’t tied – the noise that grates on adult’s nerves. I do that in my bare feet. I never thought about how feet worked, and now I can’t stop thinking about them. It’s my legs and my feet. I’m wanting to learn all about it, from a clinical standpoint - a reason to go back to school - ha ha.

It's been a year!

It's been a year! One year is a real marker. Here's what was happening this week last year:

July 3, 2011

 I gave my car away yesterday. It was a logical decision – I’m not able to drive right now, and probably won’t be able to again. It’s just been sitting in the carport for 2 weeks, and my son needed a car. It was a very short leap, a “duh” thing, really. But I gave my car away yesterday, that’s a big deal, isn’t it? Why don’t I care more about what that means?

The walking debacle yesterday was much worse than the car thing. Freaked me right out when I realized how much trouble I was in. I mean, going up and down steps was a challenge and I knew it would be, but the realization that I needed to sit and there was nowhere to do that, and what that meant to my legs? That was bad. And that it happened so fast, it’s not like we had walked a few blocks, even. My legs get rather mule-ish when they’ve done too much – they just freeze up and won’t move. That it was all happening in front of my mom and my son was especially bad. The enormity – how would I feel if I was the mom watching this happen to her child, or the child watching it happen to his mom? At least I really cried about it at the time, instead of trying to hide it.

This is enormous. I can’t work, I’m not mentally processing the way I’ve always been able to, I’ve asked for assistance from my family. And I’ve noticed I can’t stand the 2 minutes required to brush my teeth with my electric toothbrush. I’ve known what MS can do to people and I’ve considered myself lucky thus far. I didn’t know that it could change so quickly. It feels like I just woke up one morning and everything was different.

It’s kind of like getting a terminal diagnosis with no chance to fight it. In this case, though, my previous way of life is what’s dead. I can’t work, which means I’m not going to make a difference for my company through promotions to other positions. I’m not going to be respected for my abilities to write for Farmers. I’m not going to advance to making a comfortable amount of money. I’ve made the call to get the “I’ve fallen and can’t get up” button. And, I’ve had to ask my sibling to help me think and do paperwork to get on assistance programs. The real Susan would be irate over this.

Maybe my lack of emotion regarding everything that’s happening to me right now is indicative of how overwhelmed I am. I have thought it was a sign that the MS has messed with that part of my brain – the apparent inability to process what’s really going on. That could be, too. In a perfect world, it would be a sign that I know what I control and what I don’t, and that I easily trust God for all things I can’t fix. I don’t think that’s entirely it.

I had a miscarriage once. I was suddenly bleeding from a place that meant only one thing – that I was losing the baby that I was still getting used to existing. I went to the hospital and let the docs do what they had to do, but it took months to process how I felt about it. You know what? That’s where I am right now. I’m doing what has to be done and I’ll feel it more fully later on. And it’s gonna hurt.

At the same time, though, I realize that I will be able to use my God-given talents in ways that will glorify Him – blogging about MS and my faith, for example. So there are some truly wonderful things on the horizon, too.

It started with a Dream...

It started with a dream, with “It” being the clue that it was time to accept some things. I apparently don’t do that easily.

Here’s the dream:
               I was leaving my brother and sister in law’s place, but it wasn’t really their house – you know how dreams do that. I was traveling a road I’ve driven since I was 16 when suddenly I was in a field. I had no idea how I’d gotten there – I tried to remember if I’d felt the bump of a curb (I hadn’t) and looked back to see how far off the road I’d gone, but there was no road anymore, and I realized that I hadn’t made a turn, the road was just gone.
              I got out of the car and was standing on dirt with flowering weeds standing at least three-and-a-half feet tall all around and I thought “well the flowers are pretty.” Somehow I was not thinking about finding the road as much as I was wondering how it all happened.

I had this dream on June 11, 2011. Ten days later was the last day I tried to go into work - MS wouldn’t let me. I couldn’t walk, had wicked vertigo, and more terrifying, I was thinking one thing and saying something else without knowing it. Within a month I had filed for Social Security Disability, had a wheelchair delivered to my place and had been told to move since I lived on the third floor and there was no way I could safely get out of the place if there was a fire.

It’s been a mind-boggling seven months, but through it all God has been so present, in big and in quiet ways. I have experienced so much love and support from family and friends; I am so blessed and humbled. Truly the flowers are so pretty that I accept that there is no road for me anymore.

I hope my new blog messages encourage you to praise God and love, accept and care for yourself!