You have to take the good with the bad. I subscribe to this philosophy not just when it comes to my life but also when it comes to my favorite hobby – scrapbooking.

I started scrapbooking almost two years ago now. My mom had made me a beautiful scrapbook for my Bat Mitzvah when I was 13. She promised my younger sister Danielle the same thing. But life got in the way and my sister’s Bat Mitzvah scrapbook turned into a middle school graduation scrapbook then a high school graduation scrapbook and finally a college graduation scrapbook.

As Danielle’s college graduation approached my mom still hadn’t started the scrapbook. But I figured maybe I could help. After all, I was home all day with nothing to do. It might even be fun, I figured. I had no idea I would end up loving it so much, that I would find a hidden talent, and a passion… well more like an obsession.

When all was said and done, my sister’s college graduation scrapbook became a three volume set encompassing her entire life up until that point. It was time to move on to other things, so I started in on my own life.

While going through my own pictures from the last several years, there were many pertaining to my illness. Hospital stays, doctors appointments, and so on. There was even a birthday I spent in the hospital.

At first I was hesitant to include these not so happy memories in my scrapbook. But I realized that these were experiences that I also wanted to remember. These bad times in my life are part of what makes me who I am. So I put them in.

The actual time I spend scrapbooking is therapeutic. It exercises my creative muscles and helps me relax for a few hours while I design and arrange, cut and glue, label and decorate.

It’s actually rather therapeutic to scrapbook memories of my illness. Once it is scrapbooked, it feel more concretely in the past. And it can help me look to the future. For instance, I did a page of my me taking my first few steps when I first started walking again. Now I am able to walk around a store! I can look back and remember it and see how far I’ve come!

Things have been emotionally rough and raw lately.  Lot’s of things are in transition.  Relationships in flux.  And I’m still stuck in the hospital (33 consecutive days and 39 total days in the hospital by my count).  I’m trying to think of it as being 39 days closer to being released from the hospital.  It doesn’t work that well though.  But cheery flowers like these ones I got from my Great Aunt and Cousins brightened my room and my mood.

Tests a trickling in and no definitive diagnosis concerning the cause of my brain stem inflammation is yet emerging.

So I was especially pleasantly surprised to receive this cuddly visitor today.  It was just what the doctor ordered.

In the midst of confusion, I often turn to poetry to help capture my thoughts.  I wrote this one in about ten minutes, and I rather like it.  An emotional moment forever frozen like a bug trapped in amber.

A Place For Him

by Lauren Soffer

Life can be wild
Wonder is lost on this child
So she goes it alone
As she makes her way home

But the time she tripped
And she didn’t fall
A silent scream
Yet He heard the call
Still She goes it alone
As she makes her way home

Not ready
Not ready to let go
Not ready
For a hand to hold
Cause even crying all alone
At least she knows
It’s all she knows

Life can be wild
Wonder is lost on this child
This girl must
Grow up
Not a child anymore
Stand up
Reach out a hand
Lift up
Her heart till it holds
Always
A place for Him

EDIT: Last night my friends Spencer, Kristi, and I had a blast in my hospital room writing music to my lyrics.  Here’s a REALLY rough take of it – complete with my voice still completely hoarse from an allergic reaction and nasal from having a feeding tube up my nose.  Hehe.  So forgive my lack of ability to hit any of the notes right now, but I at least wanted to give you the idea.

I hoped for the best, but prepared for the worst, and unfortunately the worst won out this time.

I’m back in the hospital again.

I woke up Thursday morning feeling pretty horrible.  Fever, chills, dizziness, and worsening kidney pain.  After three days of oral antibiotics, my kidney infection was getting worse not better.  I called my doctor who agreed it was time to head to the hospital.

By the time I got the ER, fever, pain and dehydration had conspired to give me tachycardia (racing heart rate).  I suppose one of the upsides of being really sick is being seen right away.  Despite the crowded waiting room, they found me a bed in the ER straight from triage.

They ran some tests.  Not surprisingly my white blood cell count was way up due to infection.  The ER doctor quickly explained that though they send home 95% of patients with kidney infections, there were multiple reasons he felt I needed to be admitted.  I’m immunosupressed from all the Prednsione I’m on, I have multiple chronic illnesses, the oral antibiotics at home didn’t work, and so on.

So I was admitted.

I received two different IV antibiotics over the next several days.  My veins weren’t happy about it and I went through 6 IVs in as many days.  But overall my stay has been uneventful.  Mostly I’ve been too tired to do anything but sleep.

I had several visitors who helped break up the monotony.  My mom and dad spent the most time here with me.  Sunday I was pleasantly surprised by a visit from two friends from church, Liz and Halee.  Then yesterday an old friend from high school Jenny paid me a visit followed by Christy and Brad from church.

I’ve been waiting this morning to find out the results of my latest tests and was just told they are good to go.  I’ve been discharged!  Yay!

I will go home with oral antibiotics which I will stay on long term to hopefully prevent yet another one of these kidney infections I seem so prone to getting.  It’s getting old – ending up in the hospital every few months from these things.  I’m hoping that these long term antibiotics will do the trick and keep me out of the hospital.

Wouldn’t it be amazing if, during our darkest hour, we could reach under our bed and open up a box of hope?  A “box of hope” could be a figurative thing that we reach inside ourselves or out to God to find.  But sometimes you need something more.  Sometimes you need a literal box of hope.  And that is just what I created for myself during my darkest hour.

When I was 16 years old, during my senior year of high school, I was immersed in a deep and serious clinic depression.  My Obsessive Compulsive Disorder had just been diagnosed but was not yet under control.  I had constant intrusive thoughts of hurting myself – of ending my life.

Looking back I really had amazing self control on the whole.  But I could only handle so much.  The second time I caved in to the constant bombardment of intrusive images of self-harm, and I ended up cutting myself using razor blades my parents had forgotten to hide out in the garage.

Afterward I was on the phone with my therapist at the time.  She was telling me I was at a crossroads… that if I chose to continue down this path of cutting I would probably end up in a hospital.  I wasn’t really listening to what she was saying.  Instead, I was transfixed by what was sitting on the desk in front of me – the candlelighting piece my mom had made for my younger sister’s Bat Mitzvah.  She had glued this tiny shells all over the outside of it go with my sister’s tropical theme.  And it struck me then with incredible intensity how very beautiful those tiny shells were – how simply amazing it was that something SO tiny could be SO beautiful.  And if something that tiny in life could be that beautiful… well all of life was beautiful and precious as well.

I rushed to get off the phone with my therapist.  I knew that I had to find a way to hang onto this feeling.  I had stumbled upon my internal box of hope!  But I knew that it wouldn’t be easy to tap into again.  I had to find a way to make it physical while it was fresh in my mind.  I had to find a way to remind myself of this epiphany every day because I knew there would be many dark days ahead where I would desperately need to draw on my box of hope.

So I had my mom (who is good at crafty things) help me cover an old shoe box with some bright pretty wrapping paper.  I wanted my box of hope to be private and inconspicuous on the outside.  I didn’t tell her what it was for, but perhaps sensing my urgency she kindly helped me anyway.  Then I took the box upstairs to my room and set to work.

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Going through pictures and old magazines I decorated the inside of the box with things I wanted to do with my life, places I wanted to travel, people who cared about me, things that filled me with hope.  I hadn’t yet found out if I had gotten into USC Film School (a few months later I did), so I put a picture of a director’s chair with “USC Alumni” written on it.  I glued in some of the very shells that had led me to make the box to remind me of how beautiful life could be.

I put a picture of myself as a child to remind myself of happy memories of my childhood innocence.  I was obsessed with The X-Files and desperately wanted to know how it would all end, so I put a picture of that as well.

Most importantly I wrote in large purple letters:

I CHOOSE TO CONTINUE LIVING

I WILL GET THROUGH THIS

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Then it was time to fill the box.  Inside I placed a smiling drama mask to remind me of my love of theater and the creative arts since creativity had always sustained me during dark times and given me something to look forward to.

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I placed my childhood comfort animals – my blanky, kitty, and lamby – inside.  Though nubby and threadbare from a lifetime of being loved the went into the box to remind me to always feel safe.

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Next went the rug I wove myself while learning about Native Americans in elementary school.  I had always hated looking at it when I was younger because I hadn’t done it perfectly like my best friend Jennifer.  But over time I came to love it for it’s imperfections.  In the box, it reminded me that imperfection could be beautiful too!

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I put in a bracelet I made when I was 11.  All the beads were pretty by themselves but together well… it reminds me that you can have too much of a good thing.  But also to have fun and to have a sense of humor in all things.

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Second to last I put in a rope I tediously made myself during Outdoor Education in 5th grade.  I spent over an hour with my hands going numb in an icy cold river laboriously pounding all the moisture out of a reed before braiding it into a rope.  It reminds me of the power of hard work.  And the rope itself, which could hold my whole body weight, reminds me to always be strong.

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Finally I included a letter that saved my life one day.  I was home alone after school and feeling very suicidal.  I was searching for a knife to cut myself with.  Suddenly, I had a prompting to go check the mail before I got any further.  I almost never received any mail, but on that very day the following letter was there for me.

I cried when I read the letter.  It quite possibly saved my life that day.  I stopped looking for a knife and starting trying to figure out who could have sent it.  I didn’t think about hurting myself at all for the rest of that day.  The letter reminds me that I am loved even when I don’t realize it or it doesn’t feel that way, and that God is there working miracles in my life.

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I looked at my box of hope every day for about a year. It got me through a lot of very dark hours and days and months. Then there came a time when I could carry my box of hope around with me in my heart, and I didn’t need to look at it so often.

Now it mostly sits in my closet, but I always know it is there if I need it.  But today I was talking with a friend who is going through a very dark time in her life, and I told her about it.  I offered to send her photos of it, but, I thought, why not go a step farther and share it here?  Perhaps there is someone else who needed a little box of hope today.

Has anyone else made a box of hope or something similar?  Please share and post about it in the comments!

I’m well on my way on the road to recovery.  I’ve been doing more and more things independently, and I’ve been walking up a storm.  But I’ve been asking myself how much better is better enough?  What risks am I willing to take to achieve a complete recovery?

Since my Baptism three weeks ago, I’ve only used my wheelchair twice – once to attend an all day Transmedia Conference at USC and once to go to the Santa Barbara Zoo for the day with the Singles Ward at Church.  Though I’ve been doing fabulously with increasing my stamina for walking, I’m still a long ways away from being able to walk around all day at a hilly zoo.  The conference and the zoo were both a blast, but it amazed me that I already feel so weird being back in my wheelchair for short periods.  It’s hard greeting people’s belly buttons again when I’ve finally been able to look people in the eye for the first time in over a year.  I also feel more visibly disabled than when I’m just using my walker.

And I’m worried I’m headed back to my wheelchair.  The more I walk the more my joints have been hurting me.  But I’ve been pushing through the pain anyway which probably hasn’t been the best idea because I have now given myself an overuse injury in my left knee.  Now I need to get a knee braces and I’m considering getting ankle braces to prevent further injury.  I’m also supposed to start physical therapy.

So though I’ve been doing great at increasing the distance I can walk, it has come at a cost.  So that is one part of the equation.

The other part of the equation is the question of how I’ve been able to reach this point.  I believe it is largely a miracle.  A gift from God that has allowed me to recover my strength so quickly.  But my doctors feel (and I agree) that it is also that the Rituxan that I did all those months ago has finally shown some benefit.  So the question becomes would another round of Rituxan would get me even farther?  And is that worth the risk?

Those Rituxan infusions were no walk in the park.  I had problems with low oxygen during the infusions themselves followed by weeks of needing to be on extra Prednisone to counter an adverse reaction involving horrible back pain, fevers, and a rash.  And that was relatively minor compared to the other risks involved which could rarely include life threatening complications and infections.  But if the Rituxan helped reduce my joint pain this far, how much more could I be helped by further infusions?  That is a question I will discuss with my Rheumatologist at my next appointment.

In the meantime, I’m left to ponder if this is as pain free as I can get without further risk, can I live with that?  Am I better enough?  But even as I write this, I think I know the answer.

No.

I want my life back.  I want to live without pain every moment of every day.  I want to be able to go hiking and play tennis again.  I want to be able to make plans and not worry about how much energy I’ll have.  I want to be able to accept jobs and not worry about ending up in the hospital in the middle of them.  I want to be able to go back to school and not wonder if I’ll stay healthy enough to make it through the semester.

So NO I don’t want to be better enough.  I want to be better!  And I’m willing to risk a lot to get there.