Book · Illness - Encephalitis

The Word ‘Thankful’ All Folded UP (Part 1)

         – The Word ‘Thankful’ All Folded Up (Part 1) –

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Time to do something: think. Think of an extra-tough time you’ve gone through. Okay, maybe not the most joy-filled request.

Now, look at the definition of thankful: 

1. Aware and appreciative of a benefit; grateful – grateful and appreciative

2. of, relating to, or expressing thanks – a thankful feeling – thankful words

Curious why I’m asking you to think of an extra-tough time, as well as defining what thankful means? It’s to help you understand what got me—as years went by—to be closer to being thankful for these two, somewhat life-changing hardships I’d gone through.  (*1) (*2)

Thankfulness. Do I want you to think that from day one I was filled with thankfulness when my teenage pregnancy soap opera started? Or, do I want you to think I was overflowing with thanks a few years later when my brain-damaging encephalitis hit, that had me unable to even understand who God was TO thank? Am I saying that that one question, ‘Why, God?’ was nowhere to be found during both of those times? Of course not. As a matter of fact, if it could have been visible, “Why, God?” would have been bubbled over my head more hours of the day than not. I bet all of you reading this have had that bubble at least once, and that it seemed, at the time, impossible to pop.

God, having saved me when I was eighteen years old, was who I gave most of my thanks to, as most things went by pretty smoothly that first year. This verse fit perfectly:

Ephesians 5:2 – Giving thanks always for all things to God the Father in the name of our Lord Jesus Christ,            

 But about a year later . .   download   . . things changed.

I was so young when I was hit with the first of these two trials. Young in age, at nineteen, yes, but I’m mainly talking about young in my Christian life. There had only been one year of God’s word and guidance before that larger-than-life trial unplanned pregnancy occurred, followed by the brain illness only a few years later.

Thankfulness was difficult to detect. It was hard to even find a little drip-drip-drip of thankfulness. Yes, I did sense God’s Fatherly care, but thankfulness as to why I needed that care sure wasn’t standing out. That word ‘thankful’ was folded up at least ten times, put in the back pocket of my jeans in that closet I never wore.

Hearing those common words, ‘God has reasons,’ caused me to think ‘But what are they?’ That question was glued in my thoughts as every day, week, and month I was pregnant went by, and especially after every day, week, and months, even years, after my illness went by.

As time did go by, however, I—how shall I say it—started wearing those jeans tucked in the drawer, sensing something was going on in that back pocket. Something was unfolding.

James 1:12 slowly began making sense.

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To be continued.

1* First trial

2* Second trial

Marianne Petersen’s book God and Your Pillow is now available. (Amazon) – You can follow Marianne on Twitter at @marimemoirs and read more on her blog, marimemoirs.com.

Illness - Encephalitis

God, a Stranger and Tears (Part 2)

   – God, a Stranger, and Tears (Part 2) –

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I mentioned in my last blog how getting a surprise can mean a lot. Time to share that getting a surprise can also change a bit of your life. I had received a phone call from a total stranger who heard about my illness and wanted to talk. She wanted to hear how it had affected me, as her daughter had also come down with Encephalitis. (1*)

That was the very first conversation I had ever had with anyone who experienced the serious illness I had gone through. Indeed, one priceless conversation. One piece of information she shared stood out.

“Marianne, you should check out this certain website,” she suggested. “It will get you contact with many others with your illness.”

My mouth dropped. “Really? Others who had what I had?”

I eagerly grabbed a pen and quickly scribbled down that website on the closest piece of paper I could find. After passing our thanks to each other for sharing our stories, I didn’t even blink before typing that website on my computer. I found it!  Encephalitis Global. (www.inspire.com)

I saw titles of different letters from different people. Titles like . . .

– My Hardest Encephalitis Problems

– My Family Doesn’t Understand 

– Who Else Is Feeling Alone?

– Five Years Since I got Hit With Encephalitis

The list went on and on. After clicking the first one, I couldn’t believe what I was reading.

This person knows exactly what it’s like!  (I bet I even said that out loud.) Then I checked another person’s title. I can relate to his problems, too!

Time to fit in that saying “died and gone to heaven,” because I felt like I had.                   My computer had just become my new best friend.

Business woman typing on keyboard

Slowly, my eyes were getting damp. I read more. Tears were accumulating.

Tears of joy, yet tears of sorrow. I guess those ten years of loneliness had piled up inside and it was time to pour them all out. Now sure, I did have my dear husband, children, plus family and friends, but my heart still ached inside feeling alone, so having found people who could understand caused me to let loose many tears.

Soon, however, tears of joy took over. People understand! I’M NO ALONE!

“I understand how you feel,” I replied to at least ten different people. I can’t even begin to describe how great it felt sharing parts of my story to people who understood. I felt even better when, only a few minutes later, someone replied back.

I’m talking to someone who knows what it’s like! They understand me, I understand them, and we can chat back and forth!  That website became my new companion, and I checked it out a few times every day. It felt like God was telling me, “Marianne, I know what I’ve planned for you can be tough, but I’m still with you. I love giving you surprises.”

Now, years later, I’m still connected to that website and can’t even begin to explain what a treasure it’s been reading and relating with many, even having few of those now as dear friends. 

Let me share one simple fact I learned as time went by after that call. God wants us to pray for and, when possible, comfort those in need. 

II Corinthians 1:3b-4 says – God of all comfort, who comforts us in all our tribulation, that we may be able to comfort those who are in any trouble, with the comfort with which we ourselves are comforted by God. 

At the beginning, the website helped and encouraged me immensely, talking with others who have gone through what I had gone through. Well, with years behind me, I now use it as my opportunity to encourage others. I’ve even Skyped and talked over the phone with a few, watching or listening to some shedding a few tears while giving them my ear.  I savored their thank-you e-mail letters they later sent.

About six years ago, an opportunity arrived for a few of us to begin an annual lunch gathering for those in the Northwest. Worth the drive each year, indeed.

E GROUP

 

 

 

 

 

 

And this summer, a yearly encephalitis conference will be in my Seattle area for the first time. I am ever-so thankful I can help put it together.

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I’ll end here saying how I’m not in my own little world anymore, and God still hears my many thanks.

Question – Should you ask yourself if you can reach out to any who may be going through something you’ve experienced?  Believe me, it feels great if you do. Just keep in mind what Christ says in Luke 6:31 – Do to others as you would have them do to you.

I’d love it if you could pass me a note if you’ve used your rough road you’ve been on to help others. 

Illness - Encephalitis

God, a Stranger, and Tears (Part 1)

         – God, a Stranger, and Tears (Part 1) –

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Fast forward twelve years from the snowy day in December when I had that life-changing seizure. (1*) Yes, I can share much of what went on during those years, but I can’t. I mean, I can, but before I do, I’d rather show how, about twelve years later, God used a total stranger to help me.

But first I need you to do something. Imagine you went through a huge life-changing ordeal that came out of the blue, hit you hard, and altered your normal way of thinking. Now, imagine what it would be like if, for years, no one could fully understand how hard it was for you in remembering names of very common things, places, and people. What if, day in and day out, week after week, month after month, and yes, year after year, you often had to think twice as much before you said things that, for most others, were easy to remember and say? And what if that illness was rare enough that finding others with that ailment was impossible? Well, readers, that was me. 

loneliness

 

I felt alone.

 

 

 

For years I had not talked to one person who had the same illness, who could fully understand what I was going through. A few years after my illness hit I did meet one man who sort of had a memory problem from an accident, but still, not the same.

“I have a taste of what it’s like forgetting names,” people often said (and still say).

No, you really don’t, soon became the first thought that followed (and still does).

As years went by I got used to it, thankfully, as God used family and friends to show me love, support and patience when I couldn’t just pop so-and-so’s name out or say what the movie was called I had seen the night before, along with using simple words in explaining things.  However, it still was hard not knowing even one like-minded (literally) individual who could truly understand what it was like.

God knew it was finally time to do something on one particular day. An unforgettable phone call came from a dear friend.

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“Marianne, I told a friend yesterday about you having had Encephalitis twelve years ago. She wants to talk to you because her teenage daughter had it.”

My eyes got bigger. “Really?”

“Yes. She was wondering if she could call you. Can I give her your number?”

“REALLY? Oh, my word! You sure can!”

Later that afternoon. Ring, ri… (yes, I was patiently waiting with my phone close at hand and grabbed it as soon at I heard any ring.)

“Hello.”

“Hi. I was wondering if I can talk to Marianne Petersen.”

To be continued.

1* – Click here to read about that life changing seizure.

Illness - Encephalitis

I Live Here? (Part 2)

            – I live here?  (Part 2) –

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As Chris began opening that door, I asked again, but this time just to myself, “I live here?”

 

 

 

That was the last sentence of my last post about the first time visiting my home while staying in the hospital. That illness called encephalitis affected my memory big time, keeping me from remembering anything about that sweet little apartment my husband, myself, and our two young daughters called home. (1*)

As I felt uncertainty about all that was around me, my husband opened the door. There I was, standing in my home that, to me, felt like the first time. Pretend it was your first time visiting your friend’s new place. You go in, begin looking around, curious at what you see. Even though I had lived there a few years, that is exactly how I felt.

Once inside, one of the first things I noticed was my mom, who was standing in the living room with my two daughters. She held our six-month-old, Trina, as our three-year-old, Cassie, was standing there glued to her Grandma’s leg. I did recognize the girls, since they had visited me a few times in the hospital, but not instantly. After all, that was my first time seeing them outside the home I was used to: the hospital. Sad to say, but having a Mommy-type feeling toward them was still hard to find.

“This is where all four of us live,” Chris said, as he and my mom sensed a cloud of questions floating over my head while looking around.  They knew not to overflow me with information about the things I was looking at. Slowly I began asking questions about those things that stood out.

 

KS-Question-Marks

 

“Who gave this to me?” “How long have we had this?” “Do we use this a lot?” “This is a paper towel, right?”

 

 

I’m sure I more than once asked, ‘What is this?’ After all, things like a microwave, rocking chair, or changing table, were things I didn’t recall seeing before.   

“It’s time we now go downstairs,” my husband said, finally sensing I was enjoying looking around.

“Oh, cool! More neat stuff to look at,” and down we all went.

“You mean all these clothes are just mine? This shower is a lot bigger than that one at the hospital. I know what those are,” I said with a grin. “Toothbrushes! Is this one mine? It’s  yellow, right?”

And now the one thing I can perfectly picture me saying. “So this is where I sleep?” feeling all around while sitting on it. “This bed is huge!”

Remember, I was only familiar with twin-sized beds from both hospitals.

I stayed on my bed most of the time in the hospitals, so of course seeing that bigger bed stood out.

The things I saw that, to this day, stand out the most:

“What are those little boxes? They sort of look funny?” I asked while looking under my bed.

hidden gift

Looking under my bed? Yep. By this point I was having fun looking above and below, inside and out of almost everything. 

“I don’t know,” Chris answered. “but they do have a certain look that gives me a clue what they are. Let’s pull them out.”

Chris and my mom must have giggled inside, knowing that was the best time for them to explain what wrapped Christmas gifts were all about.  My face must have had the same look of excitement as a little kid who is about to unwrap Christmas presents.

“I wanna see what I got for people,” I said, grinning from ear to ear.

Of course I forget what they were, but I do know I’ll never forget sitting on my huge bed, my three-year-old-daughter, Cassie, who was now a bit more comfortable standing closer to me, hoping she would get to see a gift that was meant for her. 

Christmas time, ever since, is very special to me when watching little kids open up gifts. And I believe it’s because I got to experience opening up Christmas presents as a twenty-three-year-old little kid.

1* – Click here to read I Live Here? (Part 1)

 

Marianne Petersen is a member of Northwest Christian Writers Association and author of a forthcoming memoir about her experience with encephalitisYou can follow Marianne on Twitter at @marimemoirs and read more at her blog, MariMemiors.com.

Illness - Encephalitis

I Live Here? (Part 1)

                  –  I Live Here?  (Part 1) –

sp_1

What do you think it would be like for a twenty-three-year old to forget what Christmas is all about? Go back a few years, and that’s exactly what happened to me the Christmas of 1990.

A severe brain injury called encephalitis hit me hard December 20 that year, causing me to forget a majority of everything. (1*)  Working on getting my brain to move toward normality was taking place in the second hospital about three weeks after that brain injury hit. Thankfully, while in that hospital, a special afternoon outing took place about four weeks after Christmas. I got to visit my home for, what felt like to me, the first time.

Now I don’t recall who was with me besides my husband, who, of course, did the driving. No way could I drive, being I still had to get used to understanding how cars even worked.

My family of four lived in a six-plex apartment with two levels: the main level had the kitchen and living room, while the bottom level had two bedrooms and one bathroom. I can describe it now, but when getting out of the car that day, I hadn’t the faintest idea what to expect.

“Well, here it is,” Chris said as we pulled up right in front of our door. “Here’s the place we’ve been living for about two-and-a-half years.”

“This is where I live?” I quietly asked myself as the car came to a stop.

What do you think I did? Jump out all happy, smiling ear to ear while skipping to the door? Far from it. Instead, I slowly stepped out.

“This . . . is our place?” I calmly asked while insecurely folding my arms as I began walking toward our apartment I didn’t recall ever seeing. I stared up and down that front door and its surroundings. “I live here?”

fix-door-x

 

As Chris began to open the door, I asked again, but this time just whispering to myself,  “I live here?”

 

 

 

 

– To be continued.

 

1*  – Click here and read what took place just a few weeks before. 

Illness - Encephalitis

How Sadness Showed Me God’s Presence

             – How Sadness Showed Me God’s Presence –

 

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Are you one who makes your own abbreviations for words you find difficult to spell or those that are really long? For instance, ‘E’ is the letter I type instead of encephalitis, the word used most often to describe the illness I had years ago. (*1)

That illness caused me to forget what the names of many people, places, and things were called. (I jokingly call it my noun illness. After all, I have to find some humor in it.) It also affected my spelling, making it harder for me to glue in certain words: ‘E’ being one of them. Excuse me, I mean encephalitis.

Since there were many other things I was working on recalling—who my family and friends were, what certain items I was being shown were used for—food was far from the top of my list of what to work on to remember.  But, I still had to eat.

From that one day in the first hospital when I ‘woke up,’ (*2) they slowly but surely got me back to eating. However, sitting up on my bed was, to me, the only place to eat, having known of no other place . . . yet. Finally, one unforgettable day took place in the second hospital. I had my first experience eating in a room with other patients. No biggie for most twenty-three-year olds to eat with other people around, but for me, it was a day I’ll never forget.

“Now, Marianne, many patients eat together in this room,” my nurse told me as we walked down the hall to the dining room. “Everyone here is like you: all healthy enough and physically able to eat in this room together, but having a tough time remembering things. A few of you will sit at different tables, while a few people who work here will bring you your food.”

fotolia_106265296As I slowly looked around at all those tables, the nurse showed me where to sit. I’m glad she did, because there was no way was I able to think where to sit when I didn’t really love the idea of sitting next to strangers. Even people I’d known for years still seemed a little like strangers to me, but I knew these people I’d eat with really were strangers.

Once sitting, I was just like all the others: silent. While looking around, I noticed that the majority of those around me looked down-and-out. Sure, illness was to blame, but it still seemed far too negative to me. I had a brain-damaging illness, also, but I just didn’t get why I felt a bit more peace-filled than most of the others seemed to be.

After we got our food I’ll never forget what I asked that lady who put my plate down.

“What is this I’m eating?” as I looked at this brown, ball shaped something about the side of my fist.

“Tonights dinner comes with a baked potato. Here’s some butter if you’d like some.” No way in the world will I forget staring at that baked potato. Now remember, my sense of taste was gone thus why I just stared at it for a minute or two. After we all started eating, we slowly started talking to other patients or to those who were serving us. I couldn’t help but feel sorry for the ones who had this negative glow around them.

They shouldn’t seem so upset about so much. It just makes being here harder. I feel sorry for them. They should be happier.

Seeing all that hit me hard, for some reason.

I asked my nurses as we walked back to my room afterwards one important question. “Why are they like that?”

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“Their brains have similar problems as yours and most patients can’t help but react that way. Many get mad at almost anything because they are sick and tired of working hard at remembering. There are really only a few like you who do not get angry while here working on memory.”

After that unforgettable baked potato meal, I ate in that room many times, eventually getting a bit more comfortable sitting with those few who were willing to be more positive. That first meal, however, is the one that stood out.

Why is this on my ‘Must Share’ list? Because is was at that time, I realized God was with me in that hospital. Even though I couldn’t understand it all at that moment, as days went by I realized it was because God, my Father, was holding me, the Holy Spirit was inside me, and Christ was sitting right there next to me . . . and those potatoes. Those three are the ones I give credit to for keeping that little extra peace inside of me, which I felt and needed.

Thank you, Lord, for living in your children, even when we aren’t clear what it is we are going through.

Romans 8:26 – Likewise, the Spirit also helps our weaknesses. for we do not know what we should pray as we ought, but the Spirit Himself makes intercession for us with groanings which cannot be uttered.  (NKJV)

Romans 8:27  –And He that searches the hearts knows what the mind of the Spirit is, because he makes intercession for the saints according to the will of God.  (NKJV)

1* Click to read how my encephalitis began.

2* Click here to read about that day I ‘woke up’.