Spoons

Work usually ends the last week of September and for me it's a bitter-sweet time. I look forward to catching up on the canning, housework, and free-time I've missed the six months working.  But, I also miss the laughter, jokes, lunch dates, gossip, and friends from the office.  It's a long six months wait to head back.  But this was an Indian Summer so, work kept on through to the end of the October.

I  just barely finished up with my classes in the Master Preserver Course in mid-September when I started up with the Horticulture Diagnostic Classes.  I had my work days switched from Wednesday to Friday so I could attend. To add to my bulging schedule were my duties as the  President of the Utah County Master Gardener's Association. The Fall Social was around the corner, and I had to make sure everything was running smoothly.  Even though it was in November, there were several meetings I was in charge of, emails to send, phone calls to make, and volunteer hours to count.   

One Wednesday, I arrived late to Diagnostic Class looking like death warmed over. Lecture had been going for 15 minutes.  To give you a quick picture here, class is held in the basement of a building by massively beautiful gardens located in Northern Utah County.  It is a good, brisk, ten-minute walk for me on a good day.

This was not a good day, and the parking lot seemed to be out in the back 40. For those who aren't familiar with the farming term, that means the back 40 acres of the property or in other words, a long, long way.  I silently cursed myself for even coming to class and contemplated just crawling back into the van and driving home. But, the drive home would've taken twenty minutes, several gallons of gas, and I really wanted to go to this specific class.  Scooter it was. 

I sat through class thankful I'd stayed, but all the while dreading the poweride back out to the car.  [At least it was a ride and not a walk, or crawl].  My co-worker and friend, Meredith, must have been watching me because when class was finished, she leaned over to me, "So, you finished all your spoons for the day."

Blank stare.

"Your spoons.  You know-the spoon story."

"I've no idea what you are talking about."  Meredith was always the sane, older one.  Maybe she was talking about something for the fall social I had forgotten about.   

"You know my daughter has Lupus, right?"  I nodded and she continued, "While I was visiting her this past week, she share the spoon story with me.  You and her are a lot alike."

She then proceeded to share the spoon story with me.  I wish I had been smart enough to come up with this analogy.  But I wasn't.  I do thank Christine Miserandino for her insight though.  I have shared this with everyone I can-whether or not they can benefit from it.  It hit the nail on the head.

There are a few items I'd like to point out to non-MS people out there (well, anyone with a full day with 12 spoons).  Please read the story first.  It is really hard to explain that just taking a shower (not getting dressed or fixing  hair or all the good stuff that comes with it) can use up 3 spoons if I'm not careful.  Or how on other days, I feel so fantastic I'm buzzing around 50 mph and use up all 12 spoons + 4 of tomorrows and regret it the next day.  Christine did a great job trying to write a visual for others to see it.

One time, while I was sitting in my psychologist's office and crying to him about the loss of feeling in my fingertips, he nodded his head.  He was scribbling something on his pad, and I got angry.  I took his nodding for him knowing how I felt.  I stopped my boo-hooing and started yelling at him.

"You do not know how it feels to not feel anything-not to be able to tell if your kids are running a fever; or stroke their cheeks and feel baby soft skin!  You can't tell when you're burning your fingers on the stove until you smell burning flesh!  I couldn't even change the heater knobs in the car on the way over here.  And it wasn't because they were cold.  It was because I. CAN'T. FEEL. THEM!"

He looked at me, and, in the stupid, soft voice of a shrink, he asked, "Then, explain it to me."

I thought of someway to tell him what it felt like. I looked at my thumb, where a large bandage covered a wound from slicing tomatoes.  "It's like having a bandage on every single one of your fingers.  Try living life every single day dealing with that.  Try typing, writing, cooking, driving, whatever! Bandages on all ten fingers."

I finished the session and didn't think anything more of it, until the following week, when my doctor informed me he had tried it.  Tried what?  The bandages on his fingers.  Not intentionally, but he had cut three of his fingers chopping wood so instead of taping up just the three, he did all ten.

"And?"

"I don't know how you do it.  Everything took twice as long, and somethings, I just gave up.  I have to say, I admire you for not giving up."

To be honest with you, I have given up in frustration. But I've also have picked 'it' up again, knowing if I don't keep trying to do 'it,' I will fail. There are times I don't give up, even when sometimes I probably should--like maybe when I am out of spoons for the day.  But if I had given up way back when I couldn't do anything with my fingers (1998), I wouldn't be writing, typing, sewing, tying my shoes, and the list goes on.  I will say it was extremely frustrating.  I taught myself to do all of that on my own again.  I was in between neurologists and had nobody but my family to encourage me.  It was the thought of my family, my little children,  and all the things people told me I couldn't or shouldn't do, that spurred me on.

There are things I've accepted I can't do anymore, so I don't throw away my spoons away needlessly. But, there will always be other times when I can't help myself by saying, "Maybe just one more spoon."

.

Rantings

Recently, I was away from my main PC and was trying to get into my blog site.  I just Googled "Ramblings of a Domestic" and was expecting my page to pop right up.  Now about a year ago, this would have been the case.  But not today.  I was in for a surprise.  I got things all domestic in it but with variations of what type of ramblings or goddess.

Heartfelt
Midlife
Bad
Sorta
Southern

Really?!  Stealing my name and idea?  Can't think of your own blog title?  And what do you mean by Bad? Or Sorta?  Is Bad like in naughty or as in terrible?  And is Sorta, like you are into it only half-way?

I know Domestic Goddess has probably been around for a long time, and I don't have the patent on it. But Rick gave me that nickname a long, long, time ago.  I even have a pair of PJ's with the name on he gave me one year for Christmas.  He likes to joke with me: I'm his stay-at-home Goddess, hence my superhero name-'Domestic Goddess'.

I came up with the 'Ramblings' since I don't have specific topic on any given day; I don't have set times or days I post; and I wanted to have the freedom to post  whatever I darn well please.  AND I chose 'DISABLED' because I feel handicapped is so lame.  I'm still perfectly able to do a lot of things. The dictionary defines disability as the lack of adequate power or strength to do something. That doesn't mean I can't still do it. When you call people with MS (multiple sclerosis) or other diseases handicapped, you are putting a cap on the things we can do.  So derogatory.  The dictionary says the word handicapped sometimes offensive and gives the synonyms for it as hinder, impede, cripple, incapacitate.

So... all those out there who have piggy-backed on my great name, I'm here to let you know you're in no way 'handicapping' this Disabled Goddess in anyway, shape or form from Rambling.  'Rambling' the way it was intended--to share information;  help others know someone else has been there, done that; and hopefully help them feel good about themselves!

In the Eyes of the Young

MS and summers don't mix.  The heat drains energy and exacerbates the symptoms.  For me, my right leg seems to fluctuate between a cement post or a Jell-o Jiggler.  This causes tremendous problems with walking and balance.

My family decided to go to the monster truck show one evening of the county fair.  We parked in the back and beyond (yes, even the handicap places where out there).  We decided to take a 'short' cut. To my dismay, there was a little canal with a bridge.  Just before the bridge was a  5" step up.  Before I could start panicking over that, Rick told me to get off the scooter and the men would just lift the it over it.  I'd walk up the step and continue to ride the scooter over the bridge and down the other side (there was no step on the other side).  Problem solved.

We wandered around the fair; looked at the ribbons I'd won for the exhibits I'd entered; ate some greasy fair food; and then, went over to the monster truck show.  By this time, I was hot and tired, even with riding on my scooter.  This is never good for MS. Being tired wears you down faster; it also makes me cranky.

Rick and I sat in the handicap section, only to be told 30 minutes before the show started that we had to move, since we were in the 'splatter zone'.  We could stay there if we wanted to be hit with flying mud.  We weren't the only disabled people who had to move.  All the seats were taken by then, but folding chairs were brought in, and we were given good viewing seats.  Good thing, too!  I was really cranky by then.  :)

By the time the show was over, I was in a good mood. We slowly made our way back to the car via the short cut.  When we got to the bridge, I hopped of the scooter, and instantly, my leg turned into a cement post.

This is where a good sense of humor comes in when having any type of disease.  You must be fast on your feet and and have a quick wit.  The feet part wasn't going to happen this night, but the wit part didn't fail me.

As I was trying to step down, I started off with the wrong foot--the cement post, stiff-as-a-board leg. I felt myself start to fall.  Think of this in slow motion:

My hands went out in front of me.  In my mind, I was remembering several years ago when I had fractured my left wrist 3 times, fractured my left elbow, and sprained my right wrist. I went to pull my hands back when out of the corner of my eye, I see a tall figure walking toward me.  I reach out toward it and grab hold.

(Back to normal speed)

This tall figure was a dad carrying his four-year old daughter on his shoulders.  He catches my arms as I go stumbling forward, threatening to drag his shirt down the front of his body.  Together, we teeter around, while his daughter has a death-grip on to his hair.  As we gain our balance, I apologize profusely, and he tells me it's no problem.  We laugh, and he checks to see that I'm okay.  Rick runs over to us only to find all is well.  Meanwhile, the little girl is staring at me, my scooter, and pipes up, "Are you old?"

Her dad dies a thousand deaths, and I laugh at her. "Older than you, sweetie.  Older than your dad."

"I'm sorry for my daughter.  She has a problem with saying the first thing that comes out of her mouth. No shut off valve."

"You don't look old, but you have..."

"Hahaha, honey that's enough.  Let the nice lady move on."

"It's okay.  She just wants to know why I have a cane and a scooter, "  Turning to the curious little girl, I tell her I need those to help me walk so I'm not falling like I just did on to her daddy.

She looks all knowing and nods her head.  The dad apologizes for her rudeness and rushes off.  As he does, I can hear her telling him, "I still think she's old."

I laughed all the way to the car.  It made light an embarrassing situation.  It also took my mind off my sore and twisted ankle.  But it also got me thinking about how many times parents try to shush up the kids when all they are trying to do is find out information.

I've had children ask me before why I have a cane or walk with a limp.  I used to be offended.  But then, I realized they really do want to know.  They aren't being rude.  To them, it's a new world and they want to know how it works. Sometimes, we both have fun with it.

I've told my Cub Scouts my cane has a secret sword hidden in it, and if they don't behave, I will slash them to ribbons.  Of course, I wink, and then, they know I'm joking, But it takes the awkwardness out of the situation.  I've let my young women in our youth group use my walker or wheelchair for fun and to experience what it would be like to have disabilities. In public, I've noticed stares from children and answered their unasked questions-much to their parents' chagrin.  But it's okay.  It's how everyone learns to deal with disabilities.  It's how I learn to let people into my life and how they learn that I'm a normal person.

If you are reading this, you need to think of where you stand.  Are you a person who is afraid to let someone talk to a disabled person?  Afraid of offending them or embarrassing them?  Sometimes the person will be.  Maybe they haven't gotten over the pain, anger, frustration, or whatever grudge they are carrying in their life.  If you happen to run into one of those, just apologize for disturbing them, wish them a wonderful day, and move on.  But I can safely say, most people are not like that.  We would love to share and talk with you.

Or, are you the person who hates to have people ask about your day or about what's ailing you?  Does it make you afraid to have another human being want to know what makes you tick? Is there anything wrong with someone else talking to you and try to socialize with you?   If so, I'm sorry for you! Being a hermit is no way to live. Yes, we all need a little 'me' time, but too much of it, isn't very good. Most people don't bite. Reach out and find someone to share your burdens with and you'll find life is so much easier to bear.  Even if you're told you're 'old' by a little four-year old!

Bathrooms

Recently, I took a vacation trip that left me questioning my sanity of ever leaving the four walls of my house.  It's already hard for me to run to the store, movie theater, or doctor's office without having to make a pit stop if these outings become to long.

Take a normal movie of about 2 hrs and 11 mins. I use the facilities during the previews, hobbling back to my seat just before the start of the show.  I always seem to get the show house situated at the opposite end of where the restrooms are located.  I don't dare have a drink of any kind as that will exacerbate the 2nd trip. This will come right during the crucial moment of the movie-the murder scene or answer to the mystery. When the twinge hits, I have to hoof it.  AND if I'm lucky enough for the place to have a handicap stall nearer to me, someone that's NOT handicap is using it.  I've seen that happen a number of times as I'm limping from the back-and-beyond (barely making it, mind you) and seeing someone rushing out of there.  Errrrrrr.......So, back to the movie, missing about 15 minutes, not knowing where we are, trying to ask Rick and getting shushed by everyone.  You get the point.  If I am lucky, there is no 3rd trip until the movie is over, and then, it is look out everyone!  Peg-leg lady coming through.

On this trip through Nevada and California, I came armed with an app that was to help find bathrooms.  The app was almost worthless.  Maybe in other states it would have worked, but who knows.    I must say though, Nevada has gotten better over the years  I didn't have to worry about finding a non-existent piece of tumbleweed or hide behind a Joshua Tree to do my business.  But California!  What a joke!

I guess I am used to friendlier states with rest stops, convenience stores with actual bathrooms, grocery stores that actually let you use there bathrooms, restaurants that care if the bathrooms are not nuclear waste dumps, and people who care if you have a disease that doesn't always allows you to control your bladder. There was only one 7-11 I went into with a nice clerk who allowed me to use the nuclear grounds.  If I hadn't been about to explode, I might have thought twice about it. But believe me, after about falling over some barrels of unidentified toxins, using the grimy sink, thanking her profusely, I sanitized myself from head to toe.

This trip has made me realize I can't handle all the driving.  I really do hate road trips.  Hate it, hate it, hate it. Maybe a  plane or train where the bathrooms are accessible, but all this stopping every hour or worrying about finding a bathroom really is too much stress for me. I want a relaxing trip; I don't want a dark cloud hanging over me all day until I get to the hotel.  Plus, I want to eat and drink what I want.  I have to avoid caffeinated drinks, spicy foods, chocolate, and other things that irritate the bladder.  After this trip,  I was dehydrated from not drinking and felt like I'd never catch up.  Not good for the body.

Society has come a long way with more accessible buildings, better access to transportation, and an awareness like never before.  But, I know there are things that need to be done to help others with health issues like mine.  I, also, have to step it up.  I can do things to help out.  One, make others aware where the bathrooms are!  Two, not traveling where there aren't bathrooms (or bring one with me ☺).  Three, this one I like best, travel by plane or train and take shorter trips with a rental car.

For those out there with issues like mine, I had a hard time coming to grips with this.  The jokes of mom always knowing where every bathroom was from Canada to Mexico or why the family wasn't surprised when the first place I ran to at a restaurant or store was the restroom were getting old.  I'm coming to terms with this and learning to laugh back.  Life is too short to worry and stress.  Take it in stride and laugh back at them!!

The Merry-Go-Round

This year is flying by and I'm barely hanging on.  Ideas for this blog have flitted in and out of the recesses of my mind as I have struggled with issues due to MS, recovery from my surgery, and just life.  I enjoy sitting down and talking to my blogger world, but as the sun sets each day, I find myself flopping into bed not even kissing my hubby goodnight.

I remember as a young girl a commercial about lemonade.  It was filmed in a hazy, warm light with kids swinging in a tire swing under a big leafy tree and a huge grassy field behind them.  The camera would pan along a dirt road and into town to two old men playing a game on the porch of some shop with them laughing and sipping the lemonade.  And of course, the voice-over would ask if you remembered the lazy days of summer and how you could have it now by enjoying some lemonade.

I don't know about you, but my lazy days of summer, or any other time of the year, ended about the time I turned ten.  And with each year, they are getting faster and faster.  In fact, I've compared it to being on the Merry-Go-Round at the fair.  Life started out slow and fun. But now, my beautiful white horse with the flowing pink mane and golden bridle is spinning around so fast, I'm going to be flung off into a black hole somewhere.  I just want to stop the ride and get off.

But getting off is not an option.  Trying to slow down the ride is.

A few weeks ago, Rick and I were able to do just that.  Maybe not slow it down but giving ourselves the illusion our carousel was not going at warp speed. He had a business conference that fell right before our anniversary weekend. The conference was at a really nice lodge in Deer Valley, UT and it was all-expenses paid.  So I went with him.  The rooms were offered at reduced rates for the weekend so we took them up on the offer.  He got to attend his conference; I got some R&R; we got to spend several days together for very little money; and our anniversary wasn't some rushed date out to Texas Roadhouse Grill.

I've been eagerly awaiting the planting season.  As I was laid up with my bum hip in January, I was plotting and planning my garden.  I started my little seedlings a little later than usual, but with Mother Nature being the fickle woman she is, being late was okay.  My seedlings were going to make it.  Until...they got left out in the blazing heat and were fried!  Literally, there was nothing left of them not even a shriveled stem.  After that, I wanted to give up.  I was really too busy with doctors', work, and just keeping up with the house to even think about trying to jump off my white horse to go buy plants for my garden.  I just wouldn't do it.  It'd save me all the long months' of weeding, watering, and eventually canning and freezing.  Besides, I still had all my fruit to deal with.  And believe me, it's plenty.

To add to the frustration of trying to keep up with my spinning whirlgig, my AFO or leg brace broke--snapped by the ankle.  Who knew carbon steel could do that?  So I was back to using my worn out one. I had to really concentrate to pick up my toes and not trip over them.  I got tired faster.  One day at work, I did a beautiful face plant on the carpet.  That wore me out even more.

Even with all this, you and I know this fair ride called Life is permanent.  Face plants or dead plants don't allow us to call it quits and yell at the carnie worker, "Hey! Stop the thing. I don't like this anymore."  We have to keep plugging away.

What keeps us from losing our lunch are the moments of  lazy days and lemonade. Where the trials, tests, frustrations, jobs, headaches, life on their little merry-go-round are in slow-motion for a brief moment in time and let us gain some sanity. We breathe, start to laugh, enjoy our chosen steed, and say, "I like this ride after all, Mr. Carnie.  Let's go for another spin. And make it faster this time, please!"

A Horrible, Very, Bad Day

I'm sure we remember the book we read as a child about Alexander and his bad day.  To a little kid, it's funny how everything goes wrong.  We could relate.

Today, I was thinking about the title.  I was thinking I can relate.

My life with the no-good days started in high school gym class.  I remember it vividly. I had a gym teacher, who happened to be the track coach. I'm sure he felt it was his responsibility in life to make everyone an Olympic runner, whether they wanted to be or not.

It was cold and rainy outside, and it was another terrible day of running laps around our immense gym.  We had a 50-minute period to run- around the gymnasium mezzanine; down the stairs and across a large stage; then, down another set of stairs to the gym floor; circle around the floor and back up the stairs; head back across the stage, up the opposite stairs, and to the mezzanine;  only to repeat the process all over again. And if you were caught cutting, drop to your knees and do so many push-ups.

Now, I could do about a 7 1/2 minute-8 minute mile depending on the day.  But, I was not on the track team nor did I like gym class.  I couldn't climb a rope to save my life (and he knew this), and I was lucky to do two push-ups.  I played tennis on my own; went hiking in the back country with my family; but basically, all around sucked in this class.  He did not like me.  I think he thought I was always trying to come up with ways to get out of his class, which I didn't.  I worked hard and tried to not complain.

On this particular day, I was on the mezzanine, running.  It was about 30-minutes into class when my right leg just gave out, and I hit the cement floor.  My fellow classmates made derogatory remarks to me about being in the way and tripping them up.  One of the most popular girls in the school was in my class and just happened to be running by. She 'accidentally' stepped on me. We know how that works.   Anyway, the coach runs up,  "Get up!"

I tried. My leg was jello.  It buckled under me again.  "I'm trying."  I showed him I was attempting it and came crashing down again, bruising my knee on the hard cement.

"Quit faking it and get up!"

"I can't.  My leg won't work."  I was pretty close to tears and trying not to look like a wuss.  Classmates were running by, and I could feel the sneers burning a hole into my head.

Coach yelled at the TA.  "Drag her over to the side, so she isn't in the way of those of us who want to run." He took off running with the rest of the class.  The TA came over and tried to yank me up on my feet. My leg wouldn't support my weight and buckled under me again.  He grabbed my arm, dragging me over by some folded bleachers.  I wanted to crawl under the bleachers and die.

That was my first experience with an MS symptom.  My mother took me into our doctor, and he didn't have a clue about what was going on.  He banged on my knee and couldn't duplicate the symptom.  When he heard about me playing tennis, he jumped on it and said "Oh, that's it.  You have tendinitis.  Take these pills, and you'll be all better."

So, that was that.  Just a horrible, bad day.  Humiliation and some pills.

Thankfully, for me, nothing else happened for ten more years.  I was able to enjoy college, dating, newlywed life, and my children for a few brief months before I started having a few more of those terrible days.  And with those ten years, a bit of maturity.

I'm not saying maturity helps things.  Like today for instance, I can label it just as Alexander did-the Terrible, Horrible, No Good, Very Bad Day.  But I can also look back at a lot of good days and hope they're right around the corner.

Slow and Steady

Growing up I always had a problem with the Aesop's fable of The Hare and the Tortoise. I'm sure it was the prospective of a child's mind that a hare was a fast and a tortoise was incredible slow.  And nothing anyone said could convince me, that outside this ridiculous story, would a hare ever lose to a tortoise, or a rabbit to a turtle.

I see now that I missed the whole gist of the story.  Which is funny, because I caught on quickly to The Ant and The Grasshopper  and The Little Red Hen .  As the years go on with my MS and the natural aging process, I notice I'm slowing down more and more. Things once easy are not that simple.

I recently had a tear in my right hip repaired. This is also the leg with all the MS issues. So for me, recovery hasn't been as easy as my other surgeries have been--a week or two down and then back to my usual self. And they were some pretty major surgeries-the most recent about three years ago being a rib removal.  I wasn't a young whipper snapper then, so this one has been a bit frustration for me.

It's not like I am bed-ridden or in a wheel-chair.  I just run out of stamina sooner than I feel like I should.  I have to stop and rest more often.  Instead of one power nap a day, maybe I have to take two.  And so this is where the moral of the Tortoise and the Hare is really starting to set in to me-Slow and steady.  Or as the original Aesop fable said: Plodding wins the race.

As I was trying to recover my energy one day, I received news about a dear friend's 15-year son who was just diagnosed with A.L.L. leukemia.  She and her husband have seven other children they are trying to all juggle with his principal job and the shocking news. I went to her blog one day and wept for her, wanting to help in some way.  She knows where I am at, since she came to help me out before her son was diagnosed. But Rick and Taylor went and pruned their fruit trees last Saturday, calling me with questions I could answer. Slow and Steady. Maren knows I can't physically help her, but I can do others things to help. I can call her, send texts, or letters.

Around my house, I work a little at a time.  I try to put things away the FIRST time, so it doesn't lay there on the table miraculously growing and mutating.  Have you noticed how things do that?  You leave a dish by the sink and before you know it the whole counter is covered in dirty dishes.  Or you leave a stack of papers on a desk or end-table and soon the said object disappears under an avalanche of paperwork never again to be found.

Now with children around, I know it's very hard to keep this up.  I have a 19-year old still at home going to school.  He seems to think items are put away by the house elves, even though he is wading through the 'creep' in his room and only does laundry when he has no clean clothes left to wear.  He actually has thought that since he was about six, even when we made him pick up his room and help with the laundry--go figure.  "Fires" still start around on flat surfaces if I am not vigilant at all times. Slow and steady.

It's when I stop being the tortoise and become the hare and laze around the house, I start to lose.  I even tried that once (laze around the house) to try to teach my children a lesson. Mistake there was I didn't tell them I was teaching them a lesson.  I just didn't do anything, and they kept doing what kids do best-make messes.  And when they do that without anyone telling them what Mom's game plan is suppose to be, the fires became a raging inferno.  The next time I decided to do that I told them.  I left my resignation letter on the door.  That went over really well.  Kids were in a huge panic that Mom quit.  They didn't think moms could do that.  Life was better at home for quite a while after that.

But now, it is just me and Rick, and I can't quit.  So, I must learn to take things slow and steady.  I must not let raging infernos take control.  I can't become the hare and be complacent in things that are important.  And what IS important?  This past surgery has been giving me some more time to decide.

Happily Ever After?

I'm here stretched out in the recliner trying to write this post on my tablet. This is huge frustration for me. The speak prompt seems to not want to work. My husband would tell you it was the user button.  It probably is.

I've spent the past month visiting doctors getting ready for hip surgery, which I now have the pleasure of recovering from.  And now, it's been three weeks reclining almost 24/7 looking at all the things around me that need to be done-both inside and out.  It doesn't do much for one's morale.

I have two good friends who are also down and out with me at this time due to surgery, and we've been chatting via text or Facebook.  We all have the same woes-months of recovery and things weighing on our minds.  One of them is a principal of a high school, so she also has to hobble around while taking care of those duties. This led me to thinking about life and all its frustrations.

As a girl growing up,  I had my life all mapped out. I would miraculously have golden tresses; marry a dark, handsome prince; be swept off to some far away kingdom in New Zealand and have 6 boys and 2 girls. My dad informed me unless I married a rich man, I would be the only one at my New Zealand wedding.

My favorite Disney movie has always been Sleeping Beauty (hence the blond hair).  I never liked Snow White (must have been the squeaky voice) and at the time, she was the only brunette. And even though in the stories the fair maiden suffered trials and setbacks before she got to the end, I never thought about that. I just always looked at her happily ever after.

I had my fairy tale all planned.  What girl doesn't?  What PERSON doesn't have their life planned out? I even had parts of my plan written out on paper (ask my mom).  But as I grew older and wiser, I came to see life isn't a fairy tale. Don't we all see it at some point in our lives?  I mean, it can be a story that we write,  full of ogres and beasts that we have to over come, but our 'happily ever afters' are what we make of them. There is no prince to sweep us up on some giant horse and ride us through the trials of life without a scratch on our faces; it just doesn't work that way (that only happens in B class movies).  After the honeymoon, life moves on.
                           
            (after several days, I have now switched to the keyboard)

I was reading a small book the other day called "Your Happily Ever After" by Dieter F. Uchtdorf.  In it, he states, "It is your reaction to adversity, not the adversity itself, that determines how your life's story will develop."  He then goes on to tell us how we react to that adversity is  'a critical factor' in whether we arrive at our happy ending.  I believe he is right.  I have seen it so many times, people given a hard pill in life to swallow and becoming bitter and resentful.  And then, turning down a road of hate and loneliness.

Even though, things in my life didn't follow the script I had made, I chose not to go down the rocky road of resentment.  I rewrote my script.  I try to be upbeat and positive.  I'm not always that way; I do have pity-parties now and then.  I'm human after all, but I try never to stay down for long.  I find things that lift me up and make me happy.

Some of the things that lead me down the road to MY happily ever after are:

• My Family-husband, children, parents, siblings-all a part of who I am
• My Love of the Outdoors
• My Love of Gardening
• My Love of the Gospel of Jesus Christ
• The Scriptures-One of my favorite scriptures is from the Old Testament in the Holy Bible:  Isaiah 40:31 But they that await upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.
• My Friends-from all walks of life.  Without them and their views I would be lost.  I love them and hope they find their happily ever afters!
• My Many Talents to help me broaden my horizons
• My Chronic Illness-yes, you heard this right. It has made me a more compassionate and caring person.  I now have a deeper understanding of things both spiritual and mental I would have never had if it weren't for MS.
• My list goes on and on

I challenge you to think about what is leading you to your Happily Ever After.  If you can't think of anything, is it because you are spinning your wheels and going no where?  Have you already arrived at your Nirvana? Haven't you even thought about it?  Or did you give up long ago thinking there is no such thing or that you don't deserve to be happy?

I'll tell you now-YOU'RE WRONG!  Everyone deserves to be happy.  Starting now.  Live in the moment and find joy in each and every day-a flower blooming or a robin singing. Maybe the sound of rain splashing against the window pane or the sound of children playing outside.  But, it is something that needs to be looked for and found each and every day.

Wahkeena Waterfall
along Columbia River Historic Highway
Oregon, USA
2007

Latourell Waterfall
along Columbia River Historic Highway
Oregon, USA
2007

Fresh raspberries from my garden
Can't wait!!

Jess's Story

(My daughter emailed this to me Dec 26, 2013.  I got her permission to share this with you.  This is her email in its entirety, unedited.) 

Jessica Renee Segeberg Anderson

My mom was diagnosed with Multiple Sclerosis May 16, 1996. I was four years old then. I don’t have a lot of memories from back then, and the ones I have are few and far between and fuzzy. I briefly remember her first relapse. I was five. My mom used to walk me to school and drop me off, but one day it was my neighbor. All I knew was that mom was sick, and I assumed that she would walk me to school again once she got better next week. She didn't. After that I walked to school with some of the girls in my ward who went to my school. I’d come home and my mom would be in bed, in too much pain to move. I’d try to have her read me stories and cuddle with her to make her feel better, but cuddling with her caused her too much pain so she would flinch away. I often wondered if she was dying, and that scared me.

At a young age I had to step up to the plate. I was the oldest, so many of the responsibilities fell to me. I was cleaning the house when I was six; doing laundry when I was eight; learning basic cooking and baking when I was nine. I knew I had to pick my toys up so that mom wouldn't hurt herself on them. I thought I had to help Taylor too, since he was the youngest. He didn't like that very much. I quickly had to accept that my mom couldn't do my hair in ringlets all the time, and if she did I needed to be patient. I knew that she would burn her fingers on the curling iron sometimes. At the time I thought if I held really still she wouldn't.

During my elementary school years I didn't tell people about my mom. I knew they wouldn't understand. Many of my classmates would ask why my mom never came on field trips with us and why she only did crafts for our holiday parties and took a while to stand up when it was time to leave. I always had an excuse. The only ones who understood were my closest friends: Katie, Tiana and Quinn. They knew it was easier for my mom if I went to their house so she didn't have to worry about me. They knew that my mom wasn't always able to drive me over, so I had to ask their mom to come get me to come over and play. They were always patient, and they never asked questions. To this day I am still grateful for their love and understanding.

My dancing years were also hard. My mom would use all her energy trying to get my thick, short hair in a perfect bun with glitter like my teacher would ask. Because of the lack of feeling in my mom’s fingers, I would often walk away with several pulled hairs, sore spots where I had been stabbed with the bobby pins carefully stuck by my mom’s shaking hands and I felt like my eyes were being pulled back Chinese style. Several times I thought my eyes would stick that way. Even if the bun was too tight I didn’t dare say a word to her because it took her forty-five minutes to get my hair that way and she was tired. She had to teach me to put on some of my own make-up since she couldn’t do all of it. What wasn’t done was done by the other dance moms who understood.

My mom’s condition really struck me hard when I hit middle school. My mom had offered to take me shopping at the mall for back to school clothes. But because my favorite stores were so spread out, we had to rent a wheelchair from the front desk. It was too hard for her to walk. While I tried to be the understanding daughter, a small part of me was embarrassed. My mom was supposed to take care of me, so why did I have to push her around in a stupid chair? The trip quickly became frustrating; the clothing racks were put too closely together; people would stare, especially when the chair became stuck (which was often); when my mom would ask the sales person a question they talked down to her like she wasn’t all there; others would avoid us entirely. How dare they? Why do they just stare when clearly a twelve-year old girl is struggling? Why are they staring at all? Can’t they see that my mom is a very intelligent person and does not need to be talked to that way? And we don’t have the plague! Walking past us is not going to put you in a wheel chair, though I might put you in one. After only a few minutes I would quickly become irritable and snappy, making the trip unpleasant for the both of us. This was repeated every year during my time in middle school. Sometimes I would run into classmate, who would stare and be confused and then corner me the following day at school. “What’s with your mom?” they would ask. “Why is she in a wheelchair? Is she handicapped?” And then following the questions, before I could even explain, was the look of pity. I grew to hate that look. I would always brush the questions off with a brief explanation, since I knew they really didn't care that much. “She has MS. Walking is difficult for her sometimes.” This was often followed by a “oh, okay” or a small nod. Occasionally I would get the question asked by one of my overly dramatic classmates if that meant my mom was going to die soon. No, no it does not.

Ninth grade things started to get a little harder. I was hanging out with friends more often, friends whose mothers didn't understand and were too busy so my mom would have to drive me. At one point I was “dating” a guy in my orchestra class. Thinking I could open up to him about my mom, I tried. Instead, I was shut down with all his problems and how my mom’s disease was nothing compared to his pain. I’m still trying to figure out why I stuck with him for so long (six months). Thinking that others would be the same, I shut the concerns about my mom away. I even stopped talking about it to my friends who already knew about my mom’s condition.

I started high school trying to hide the fact that I was concerned about my mom’s well-being. I had been watching her for years give herself shots every other night to help with the symptoms, but I was frustrated. They didn't seem to be working. I felt like it was just dragging out the inevitable, whatever that was. I didn't want to think about it. By this point I had pretty much taken over the majority of the house-hold duties—laundry, dishes (most of the time), sweeping, mopping, vacuuming, and keeping the house clean. I became a neat freak so I spent most of my energy doing this. My mom would make dinner most nights and have me help. Occasionally when she had done too much in the garden, or she had decided to haul out her scrapbooking stuff and worn herself out, I would make dinner. I would often stay up late to do my homework so I could make sure that I was available when she called me. Often I would get frustrated with this, but I knew that she needed me. I had no idea what I was in for in the next few months.

One morning in February 2008, I woke up to my alarm. I shut it off and rolled over to try and catch a few extra minutes of sleep when I noticed that the lights were all off in the kitchen, and it was quiet—too quiet. My dad was out of the country, but usually my mom was up at this point. She was usually yelling at me to get up and get ready, because I took “foreeeeeever.” I got up and got dressed, thinking maybe she overslept. Taylor came upstairs a few minutes later, also dressed and ready for school. He looked confused when he noticed that mom wasn't up yet.

“Where’s mom?” he asked me.

“I don’t know…” I got up to go get her. It was her turn to drive us to school and we had to leave soon. I slowly opened her bedroom door trying not to let any light in. To my surprise, she was awake. But she was still in bed, only half dressed and crying. She told me that our next door neighbor was going to drive us to school today because she wasn't feeling good. I rushed to the kitchen and got her a tall glass of ice water and some crackers to munch on. I didn't know it at the time, but my mom had relapsed. Her body had started rejecting her old medication and to start a new one, she had to go a month without her medication to detox her system.

It was the hardest month of my life. With my dad gone for two weeks, I suddenly had more things I had to take care of. At sixteen, it was overwhelming. I had to make sure that Taylor was up on time to get to school. I had to make sure that my homework—and his—was done for the next day. I had to make dinner for both of us, and my mom when she was feeling up to eating. I had to keep up on laundry, which seemed to never end. I couldn't hang out with my friends because I was scared of leaving my mom. A few of them became angry. “Why do you have to take care of her? She’s your MOM. She should be taking care of YOU.” This never made sense to me. It seemed selfish to me. My dad called as often as he could, but being in India made it hard. I cried on the phone to him a lot because I didn't know what to do. At one point, my grandma came over to help, which was comforting. But nothing could change that my mom was deteriorating in front of me and I couldn't stop it.

During this time I became severely depressed. My friends who didn't understand left me, thinking I would sort it out myself. Tiana and Quinn stuck by me though it all, offering to come over and help if I needed it. I’m wishing now I had taken them up on that offer. I’m sad to say at that time I shut a lot of people out. Including my mom.

In the middle of March, when my dad had returned home, my mom started a new medication—Tysabri. While I was grateful that she would start getting better and functioning again, I knew the damage had been done. My mom now had foot drop; her right foot now dragged on the floor, causing her to limp. She couldn't walk down to the bathroom without using the wall or her cane for support. She had to use the electric wheelchairs at the grocery store, and she couldn't do all of it without some help (usually me).

During this time I had made a friend who I had learned to trust. At some point—I don’t remember when—I had opened up to him about my mom and my concerns. Thinking that he would reject me like my “boyfriend,” I tried not to go into too much detail. But I was quickly surprised. He asked questions, showed his concern, asked if there was anything he could do personally for my family, even if it was just a prayer. He was the first person that I completely opened up to about my mom’s disease, and that I was afraid of losing her. I told him I was probably defensive about it because I was trying to ignore it, make it go away. Since I was a kid I've always subconsciously thought that if I ignore it, it will go away. But that’s not the case in life. And I will never forget what he told me.

“Shutting down and shutting people out isn't going to make it go away. Shutting her out isn’t going to help her. She needs you, Jess. She loves you. Maybe it’s not fair that you got dealt this hand in life, but I know you are strong enough to do this. So stop shutting everyone out, especially her. Be the best daughter you can be for her.”

Even though it’s been hard living with a mom who has MS, I've learned a lot. I do not feel sorry for myself, and I don’t want anyone to feel sorry for me. Even though it’s been hard, it’s been a blessing. The past eighteen years have taught me more than I now. I didn't realize it until I moved away.

1. I am more mature than a lot of people my age. A lot of people used to pity me for “losing my childhood” but I have never felt that way. Even though I had to step up to the plate at a young age, I still got to be a kid. I still got to run through the sprinklers during the summer and play on the playground. I played with my toys and read books. I still got to be a kid. And because of everything I learned, I was well prepared for when I moved out. I taught one of my roommates to cook and I am currently teaching my husband to as well. I’m still teaching him my definition of “clean” as far as the house goes.

2. I know how to work and the value of it. At thirteen I volunteered to work at the Scera Theater in town to get some work experience for when I turned sixteen. What surprised me most when I started there was I already knew how to work. I knew how to work because my mom had taught me. I knew that I had to do to my absolute best and not take any short cuts. In my house, taking short cuts and not doing it properly meant doing it again.

3. I’m close to everyone in my family. Because my mom was sick so often, Taylor and I often were left to fend for ourselves entertainment-wise. We knew the rules; we had to finish our chores before fun, and we were only allowed to be on the TV for an hour and a half. After that, Taylor and I usually went to our rooms and devised some way to play with my Barbies and his action figures for his tree house. Sometimes we would combine our TV time together and take turns being Link (from legend of Zelda) and his off screen side-kick or the little blue fairy Navi (on screen). Sometimes this was nixed though because our high pitched voices would irritate my mom. I don’t blame her. Often my dad was asked to run errands for my mom. My dad would invite me along to spend time with him, because sometimes it was all we had. I still cherish the times were we would crank the stereo as loud as we could (because we couldn't when mom was in the car) and sing at the top of our lungs with my dad playing the air guitar or using the steering wheel as a drum. I didn't get to go on a lot of “shopping” sprees like other girls do with their moms, but I did spend a lot of time playing games with her. Our favorite is Scattergories. I have her (and video games, believe it or not) to thank for my vast vocabulary. When she was feeling good, we would spend a few hours playing until our brains hurt or until we started getting the same answers (which was often).

4. I know who my true friends are. With my mom’s relapse, I learned who really cares and who doesn't. The people who are my friends today stuck with me through everything—thick or thin. Even though we've all moved away, we still stay in touch and they always ask how my mom is and how they can help, even if it’s just a prayer.

5. I don’t judge others and I try to serve where I can. I used to get so irritated with people when I would get the judgmental looks when they would see my mom in a wheelchair. Over the years I've learned to look back at them and make them as uncomfortable as possible. I've even come out and asked a lady what she was looking at and that it was rude to stare. I know that people are rude, and ignorant. But that doesn't mean I should be too. I've always tried to be caring to those who are different, and I go out of my way to help people in need. One day at the grocery store an elderly woman in a wheel chair dropped her credit card. Immediately thinking of my mom and how long it would take her to get out of the chair, grab the card and then hoist herself back into it without knocking it over or falling over, I stopped. I stooped down, grabbed it and handed it back to her while I helped her back into her chair. She thanked me, patting my hand and looking into my face with her teary eyes. It only took me a minute.

Even though the past eighteen years have been a challenge for me and my family, I feel that we have come out on top. I realize that things could be much worse and we are blessed. I've tried to always look at the bright side of things to keep my chin up. Sometimes its things like watching my mom buzz along the aisles at Joann’s in the electric wheel chair; she’s pro at it now and buzzes a long like she’s in NASCAR and not the store. Other times it’s help from ward members or friends. Even though life was hard, I’m grateful for my challenges.