It’s the Only Half We Need

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This morning, as I was trying to summon the energy to sit down and write, I stumbled upon this blog post by Tim Keller.  Go ahead and read it.  I’ll wait.

Apparently, Tim Keller, a favorite author of Kevin’s and a pastor of a church in New York City, also had cancer.  And when he did, he struggled with the question, “Why me?”  And then when he didn’t die, but others did from the same cancer, he again struggled with the question, “Why me?”  My friend Candace said that she and Stuart have gone through the same thing.  Why was Stuart spared and others weren’t?  The mind naturally turns to this question.

As I mentioned earlier in the week, I’m not struggling so much with “Why us?” rather with the bigger question of, “Why evil at all?”  Why is there sin, sadness, brokenness, and death.  I understand the fall, and man’s free will to turn from God, and the trickle down effect that this has had over thousands of years of brokenness.  Yet still, it really does seem like maybe, just maybe, it might have been a better idea to have just not let evil come into existence to begin with me.

But that’s just me.

Anyway, luckily, I’m not God.  And in Tim’s article, he goes through four of the main answers that people tend to hear for the question of suffering, none of which are very satisfactory.  In the second half of the article, he points out that of all the world’s religions, Christianity is the only one that teaches that God came to earth (in Jesus Christ) and became subject to suffering and death, “so that some day he can return to earth to end all suffering without ending us.”

He goes on to say:

Do you see what this means? Yes, we don’t know the reason God allows evil and suffering to continue, or why it is so random, but now at least we know what the reason isn’t—what it can’t be. It can’t be that he doesn’t love us! It can’t be that he doesn’t care. He is so committed to our ultimate happiness that he was willing to plunge into the greatest depths of suffering himself.

And he rightly acknowledges that this is only half of the answer.  But he quickly points out that “it is the half that we need.”

 

I don’t know why this is happening to us.  It’s not right.  It’s not fair.  I don’t know if Kevin is going to live or die.  And the not knowing, frankly, is killing me more than I imagine the actual grief of death might be.  It’s slowly driving me insane.

And I can honestly tell you that I don’t trust God right now.

I can honestly say that I don’t believe He has a plan for all of us, so please, dear friends, don’t reach out and encourage me that He does.

This right here, this that we are going through…  It’s senseless.  It’s horrible, and it hurts, and it sucks.  And I do not, for one second believe that it is part of God’s plan.  And it frankly hurts when people tell me so.  They say these things in love, in an attempt to be encouraging, but the most encouraging thing right now is for all of you to sit with us (physically or virtually) and agree that this stinks.  It really really does.  Stupid cancer.

And then, after we’ve all had a good cry about it, we can look up and see that God is still here.  Thank goodness that we can cry and shake our fists and scream angry, unwritable words at God and He can take it.

I don’t know why this is happening or what will happen next and I will probably not understand any piece of this mystery on this side of heaven.  But I am finding a lot of comfort in realizing that the half of the answer I have is the half I need.

God loves me.  God loves Kevin.

“We should not expect to be able to grasp all God’s purposes, but through the Cross and gospel of Jesus Christ, we can know his love. And that is what we need most.”

That is the only half I need.

Complaining

I just feel like complaining for a moment so indulge me. A week ago our AC upstairs broke. But our friends had just put insulation in so instead of getting to 113, it only got to 87. Also, three days earlier, some other friends sent us $500. The AC repair was $480. Thanking God for blessings and meeting our needs. I was keeping my chin up.

But then… On Monday our car broke down, then the scans had to be delayed, then we got the bad news and then last night my iphone fell off the couch just a two foot fall and I just discovered the edge of the front glass is cracked. And that’s just not fair.

Scan Results

Will write more later but here is a quick update. Kevins brain MRI came back clear, praise God. His other scans showed some increased growth on his face and the spot on his liver disappeared but a new spot appeared, so I guess that means its worse. Either way he will not be continuing IL-2 treatment. We will meet with doctors Monday to discuss the next step.

We are numb and don’t really know how we feel. Please keep us in prayer for now.

Love,
Rachel and Kevin

On dying to self and other Monday lessons

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Kevin has his scans today.  Our calendar stops at this Wednesday.  We simply cannot plan a thing past that day, since we have no idea what will be happening next.  Maybe the scans will show progress and we will rejoice and return for the third round of IL-2 next Monday.  Maybe they will show no progress, and we will cry and then take a deep breath and discuss further treatment options.  Maybe they will show that not only has the treatment not helped things, but the cancer has continued to grow and spread.  And we will mourn.  And we will pray.  And we will try to trust God.  Maybe.

But today, I cannot live in maybe.  I can only live in today, and try not to worry about the maybe.  Kevin decided to go to work this morning because it is good for him and he is, amazingly, able to set aside his worries and fears and focus on his job.  Work is a wonderful distraction for him when he feels well enough.  I decided to go up to a coffee shop that I have recently discovered.  It rests hidden in the back of a wooded apartment complex, overlooking the Chattahoochee River, right up against national park and trails.  It is one of the most peaceful and relaxing places I have ever been, and I go there and walk among the rocks at the edge of the water and meet with God.

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This morning my neighbor called me up.  She has twin girls who have a birthday today.  Sweet little Ra’Niya is turning twelve.  But her sister Sa’Miya died when she was six months old from SIDS.  Maiya was calling to see if I was around for a visit, but I had already headed up to the coffee shop.  I listened to her share about how Ra’Niya woke up at 4AM this morning crying, mourning the death of a sister she had never known, but who still holds a piece of her heart.  I cannot imagine losing my own twin, or even the very idea of having one but having never known her, only having known your mother’s grief as the years’ milestones pass by… birthdays, deathdays, holidays.  Even twelve years later, the wound is still deep and painful.

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I invited Maiya and Ra’Niya to come up and meet me here at the coffee shop, knowing that it would be a special place where we could pray and perhaps God could meet with them the way He has been meeting with me out on the water or on the trails.  They are coming up, but first, said Maiya, she needed to pay a visit to a friend who was admitted to the hospital last night because the treatment is not working and the cancer has spread to her brain.  They are going to sit with her friend for a while, and then come and join me and we will cry and pray together.

 

In her own grief, Maiya is making time to minister to another.  She comforts her daughter while enduring the pain of her own loss.  I can not fathom the pain of the loss of a child.  Nor the painfully intertwined emotions of having a twin that survived while one did not.  Daily reminders of joy and pain, gifts and loss.

In going through this time of such and pain and loss for our family I too often forget how many others are grieving.  Kevin is still here with me.  We woke up this morning and were granted another day.  Yet there is still loss.  Life will never be the same, no matter how this whole thing turns out.  He will never be the same and neither will I or even our children for that matter.  There are wounds that will take the rest of our lifetime to heal and grief over missed opportunities and lost time.

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Yet this morning, I find myself drawn the thought that I must die to self.  That in dying to self, to my own grief and fears, I can minister to others who are grieving and who are hurting.  As I pondered that thought, I knew what I wanted to write about today.  I opened my computer and looked up the verse on dying to self.  I was surprised that all the translations I found did not use the word “dying.”  The word used in nearly every translation I found was to “deny” ourselves.  The command is from Jesus.

He says in Mark 8:34-35 

“Whoever wants to be my disciple must deny themselves and take up their cross and follow me. For whoever wants to save their life will lose it, but whoever loses their life for me and for the gospel will save it.”

I don’t know, I’m not a theologian, and I haven’t taken the time to really study this verse in context.  But what it says to me today is that I can, in fact I must set down my own fears, my own worries in order to follow Christ.  And in doing so, Christ will be able to use me to minister to others.  And I’m not just bailing on my own needs either.  Because if things work out the way He is commanding, then someone else will deny themselves and follow Christ and be led to minister to me.  In trusting that God works things out this way, He allows all of us to minister and be ministered to.  He allows us all to be a part of His overflowing love.

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I spoke with a friend and mentor yesterday about my current struggles not with why did Kevin get cancer, why did God allow it, etc.  But my struggles are currently a little bigger, more like, why God, in Your perfect design and wisdom, would you have even created a world that had the possibility of evil to begin with?  It all seems a little absurd that if You could design ANYthing in ANY way you wanted, you would really create it all this way.  Sometimes it seems like everything after the fall is just like this great crazy compromise.

I am blessed to know I am not alone in my doubts and questions.  This issue is one that has been studied and debated throughout all of the history of Christianity.

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John shared with me one idea that God was so overflowing with His own love and goodness that He wanted to create man to share it with and to add to His own expression of His love.  And even before the fall, God created man to be in relationship with other humans, again as an expression of His goodness.  He said, “It is not good for man to be alone.”  And then He created woman.

So anyway, as I meditated this morning on this denying self and ministering to others who were grieving and hurting, I came back to what John shared.  In His love and goodness and wisdom, God created it this way.  From the beginning to the end of the Bible, God tells us that He created us to reflect and pour out HIS love through ourselves and into others.  And to receive HIS love into ourselves from others.

And so today, instead of borrowing worries from tomorrow, I choose to die to self, to deny myself, and to allow God to use me instead to comfort another.  And in so doing, I am myself comforted.  Thank you God for your wisdom in this mysterious design.

On kayaking and following God

Fire kayak

Photo Used With Permission From: Creative Every Day

Last week, Kevin and I went up to our friend’s lakehouse just north of the city.  It was a wonderful place to get away, and we were so grateful to have been given the opportunity for a change of scenery.  Unfortunately, Kevin was pretty sick for most of the visit and he needed me to stay close by, so neither of us got to enjoy much more than the inside of the house.

But I did manage to slip down to the dock once during one of his naps.  My friend had encouraged me to go out on the lake in one of their kayaks, which were waiting for me by the water.  I had never been kayaking before, but it didn’t look too complicated.  Put boat in water, climb in, paddle toward pretty island in the distance.

And so I did.

At first it was just lovely being in the water.  I felt like I was paddling away from all of my cares and worries.  I dipped the paddle, first on the right, then evenly on the left.  I picked up speed, cutting quickly through the water.  But as I got a little farther from the dock, the kayak started to slow.  Then it started to swerve to the right, and even though I was paddling once on the left, once on the right, the boat started to turn around.

I adjusted my paddling, trying to keep a straight course toward the little island.  Now I was paddling once on the left, twice on the right.  But then I started turning in a circle in the other direction.  I dug the paddle in harder, still trying to find a pattern of paddling that would keep me moving as cleanly as I was just moments earlier.  But the kayak refused to cooperate.  I couldn’t figure it out, should I be paddling twice on the left, then once on the right?  No, that didn’t work, let me adjust again.  Now more adjusting.  But it was never the same.

I got irritated, feeling like it didn’t make any sense why, in the middle of a calm and peaceful lake, I was getting nowhere.

In frustration, I set down my paddle and gave up.

As the kayak recovered from my furious paddling and circling, the water around me evened out and for a shred of a moment, the kayak was completely still.  Slowly, and without any movement from me, the kayak started to move.  It was only then that I realized, even though the water seemed quiet and motionless directly surrounding my boat, that there was movement in the water ahead of me.  I sat very still and focused on the water’s movement about 20 feet out and could see, almost imperceptibly, that there was a current, and it was slowly drawing me toward the cove to my right.

I sat still for a while longer, wondering how long it would take for the current to move me and my kayak that long distance, and how much speed I really would pick up while doing absolutely nothing.  I started to think about how there are so many, many times in life when we feel like we should be furiously paddling toward some arbitrarily chosen destination.  We get frustrated and angry because things don’t seem to be working out the way we think they should.  And we pray loud and hard, trying to figure out what God wants us to do and where He wants us to go.  We tell Him that we are willing to try really really hard if that’s what it takes.  We are His valiant warrior, fighting for His goals and His ways.  But somehow, we are not getting anywhere.  And it’s really stinkin’ annoying.

And then, in the moment when we just give up in exasperation, we find a place of quiet and stillness.  And in that space, we begin to feel God’s movement.  At times it feels like leading, and at other times, we are just along for the ride, simply not fighting against the current.

I floated along for some time as the kayak picked up speed and drew me into the cove.  I bumped into the shoreline and continued to sit quietly, wondering what God wanted to show me here.  Why was I here?  Both literally and figuratively, I pondered that question.  I sat, probably looking pretty silly, on the edge of someone’s lakefront property, staring at a sandy patch of shore for a good ten minutes.

I thought, “This is really dumb.  There’s nothing here.  I can’t get out of the boat and explore, it’s private property.  I’m just kind of stuck here staring at some tree roots.  What is it God?  I am willing to yield to you.  I’m totally getting this lesson you’re teaching me here in the kayak.  So, what is it you want me to see?!”

I realized how often I’ve felt this way lately.  I read so much about dying to self and yielding to God’s sovereign power in my life.  But what does that mean?  Okay, so I’ll yield, as best as I can figure out, and let go, and enjoy the ride, whatever, whatever.  It all makes for a sweet little inspirational guidebook.

But what do you actually do?

If you just stop moving and ride along where the current takes you, you end up sitting, beached on the shoreline, staring at tree trunks.

Or you end up sitting in bed watching another episode of television.

Or you end up staring at the dishes filling up your sink thinking, “I don’t feel like doing the dishes.  God, do you want me to do the dishes?  Where are you leading me?”

Frankly, I feel like the letting go just leads me into a place where I feel stuck.

In a funk.

And you know how I feel about feeling funky.  It’s not fun.

So, keep in mind, that as I’m pondering all of this, I’ve been sitting in a beached kayak, at the edge of someone else’s property, slowly bobbing up and down, staring at tree trunks.  I saw some movement flick above me and looked up to notice someone peering down from the edge of their screened in porch.

Oops, I’d better get going.

So, I shoved my kayak off and started carefully paddling my way out of the cove and heading toward the little island, my first destination.  As I paddled, I unconsciously started to look and feel for the current.  I anticipated the slight breeze and which way it would push the kayak, and watched the water ahead of me, more carefully adjusting my paddling to be in sync with its movement.

And finally, I started to glide.  I picked up a little speed, but as soon as I focused on my own paddling and not the water in front of me, I lost my sync and had to slow down and re-adjust.  In that moment, I feel like I got it.  Yes, there are times when we must simply let go and rest quietly in his presence.  And I am so grateful that we can peacefully sit and let God carry us along.

But I don’t think He wants us to check out either.  Prayer is a two way street.  It’s talking to Him AND listening.  It’s asking AND receiving.  I believe that it was good for me to simply put my paddle down and sit quietly, resting in His leading.  But I also believe that God gives me desires to follow and pursue.  BUT, and this is the big thing, I must pursue them whilst keeping my eyes on His leading.  I must listen for His voice, look for His presence.  It’s not difficult, but it requires discipline.  Luckily, grace abounds, and we constantly have new opportunities to join Christ in journeying, listening, paddling, participating.

I reached the island.

And it was perfect.

Playing hookey from work… not as fun as you might think. Our week in pictures.

I was trying to post an update on Wednesday, but we went up to our friends’ lakehouse and I forgot my laptop charger… blergh!!  Then, when we got home, Kevin was still sick, I got in a funk, he got in a funk, and well, here we are Sunday morning, both of us finally starting to feel less “funky”.

We’ve been home from the hospital for about a week, and at this point after the last round, Kevin was feeling pretty good.  In fact, his whole week of recovery was almost, dare I say it, nice.  He mostly felt tired, and every day felt a little better.  We didn’t have the kids with us, and weren’t really missing them too badly yet.  We were able to go out when we wanted, sleep when we wanted, watch TV when we wanted.  We kind of felt like we were playing hookey from life, and it wasn’t all that bad!

This round, however, has most decidedly not been nice.  It’s not been relaxing, fun, or rejuvenating.  Kevin has had nausea every day since he’s been home, as well as constant fatigue mixed with sleeplessness.  That is really not a good combination for much of anything but getting depressed.

We have spent a large amount of our days right here, in front of the television.  Take note of the yak bucket next to Kevin’s side of the bed.

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I  have spent a lot of my time here, working on puzzles.

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Or doing mindless word games.

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Even when we went up to our friend’s lake, which was beautiful, and a wonderful escape, Kevin was too sick to do much more than lay around.  He didn’t really feel up to even going outside very  much, because sitting up was too exhausting for him or made him feel nauseous.  So, it was really just more of a change of scenery.  Good nonetheless, but not as great as I’d hoped.  I did manage to go down to the water and out on the kayak once, and that was amazing, but for the most part, Kevin wanted me near him.

Kevin has never struggled with depression in his life, and has often questioned me about how it feels, because it’s so outside of his realm of understanding.  We are coming up on a year now that Kevin has been sick for probably 75% of the time, and the exhaustion is definitely taking its toll emotionally.  He is starting to understand depression.  When you don’t feel like getting out of bed, but you can’t really sleep, but you don’t really want to watch another television show, you start to get depressed.  And he’s really tired of feeling crummy all the time.

I try to be his cheerleader, encouraging him to get up, take a shower, get dressed, sit outside, read a book, take a walk, etc.  But if you feel like total crap, sometimes a cheerleader can be really annoying.  So I try to find the balance.  And that gets hard for me too.

Sometimes, I curl up in bed with him, and we enjoy a marathon of a few episodes of The West Wing.

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Sometimes, I sit in the recliner next to our bed and try to read, or simply watch him sleep.

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Often, I’m running up and down the stairs making him breakfast that he may or may not feel like eating.

First I try this:

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Okay, that didn’t go over so well, how about this?

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Or bringing him medicine that may or may not make him feel better.

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A lot of the time, I find myself ambling around the house, not really knowing what to do.

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I have all this time.

Sort of.

I don’t have the kids with me, so my day is soooo much less full, but Kevin is awake/asleep/well/sick at unpredictable times.  I find it hard to get started on a project, not knowing when I will need to stop.  I also, frankly, find it hard to get motivated on much.  I mean, really, would you feel like cleaning your house if your husband was upstairs sick from cancer treatment?  Plus, I really miss my kids.

It’s been a rough week, even with the lake vacation.  I’m starting to realize something that I’d never really considered.  As much as we all love to have a vacation here and there, we as God’s creatures were created to work.  Now that doesn’t mean we must work like dogs from morning until night.  Margin is good.  Space is good.  Rest is good.  But without meaningful work and rhythm to our days, we fall into a funk and depression sets in.  We find it hard to do much of anything and it becomes even harder to pull out of that funk.   Kevin is on “vacation” from his job when he is home sick.  I am on “vacation” from mine with the kids out in Cali.  Both of us feel awkward and out of our element.  We are ready for a return to normalcy.  Oh, what we both wouldn’t give to just have our life back.

Kevin starts back to work tomorrow, but he’s not exactly looking forward to it.  He’s feeling kind of overwhelmed and worried that he will continue to be sick.  But he also wants to work because he’s hoping it will help to break the cycle we’ve fallen into.  Plus, work is good for the bank account, and that motivates him.  But the biggest thing for both of us is finding a new rhythm and balance each week to avoid falling into this funk again.

Question for any of you my dear friends…  How you find rhythm or a sense of purpose to your days when there is no obvious one imposed on you?

My ADHD Story Part 2

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Hi there!  If you didn’t drop in yesterday, click here to catch part one of this story.

After that first diagnosis, I began what I would call my conscious ADHD journey.  I’m now 33 years old, so it’s been six years of learning and growing.  I originally bought a few books on the subject of Adult ADHD, and I wouldn’t say I exactly devoured them.  It took me a full year to be able to read through any of those books without breaking down and crying with regret for the pain and lost years.  I would read the case studies in the books, and they would just hit so close to home that it hurt.  That is what I referred to earlier when I mentioned a “mourning” period.  Even though I now had an answer, or a name at least, to describe how my crazy little brain works, it still just took time until I was ready to really begin active “work” on utilizing ADHD resources and tools.

After about a year, I was finally ready, and so that would have been about summer of 2007.  I probably spent the next year or so really actively reading different books and articles and trying to put things into practice in my life.  By fall of 2008, I felt like I had gone about as far as I could without professional help, and was starting to also be open to learning about how medication could help.  But we decided to start our family instead, and pretty much since fall 2008 until fall 2011, I have been either pregnant or nursing, so no ADHD medication for me.

But I continued reading books and trying new things, particularly in the area of time management and understanding my own abilities.  I figured out that while some moms are appear to be supermoms, I was just not the type of person who was ever going to be able to “do it all” and I started to get to a place where I could just be okay with that.  Understanding my own limitations led me to start developing more healthy expectations for myself and my various roles as wife, mother, home-maker, photogapher, etc.  This was a really really huge turning point for me.

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I also started really working on getting a better sense of time passing.  I was surprised to read several times that people with ADHD have a lot of trouble with time.  I wasn’t someone who was really chronically late to meetings, etc. but I was always rushing to make sure I was on time.  And as far as projects and other things with deadlines, I was often late with those, or struggling at the very last minute.  I would also make these grandiose lists and plans for my day, and then feel like a failure when so little of it got done.  Even when I was feeling really focused, and worked really hard, I rarely made a dent.  But in reality, I had made a plan that would have been impossible for even supermom to complete in any given day!

I started to understand that I had a lot of trouble knowing how long a given activity or task would take.  So I did a few simple things like putting a clock in every room of the house (even the bathrooms!) and utilizing timers to keep me on task or to see how long something really took.  The biggest thing that came out of this was me having a renewed understanding of how much less I was able to accomplish in a day than I thought I should be able to get done.  I learned to adjust my expectations, and to also know when my high and low energy times were.  I realized I’d been constantly setting myself up for failure by not taking these very real aspects of who I was into account.

I also started working on rhythms and routines.  One of the best things that ever happened to my ADHD was having two colicky children.  Both of them struggled with reflux, thrush, and just plain colic.  Out of sheer desperation, I put them each on strict, age appropriate schedules, because they were crying all day anyway, and at least this way I knew that I was feeding them enough and giving them enough opportunities for sleep.  They both eventually caught on, and life got better when each of them reached about six months of age.

But because of those forced schedules, my days had a rhythm imposed upon them that I probably wouldn’t have had the discipline to do myself.  During Jude’s first year, there were times when he was up at 6AM.  After nursing and getting changed, he was wide awake and naptime wasn’t until 9.  So I would toss him in the stroller and we would go to the park at 6:30.  I ended up getting outdoor time, quiet time, and time management, all because I’d put my kids on these crazy, strict schedules.  (Please know that I am making no comment on others’ ways of handling that first year of babyhood.  This is what worked for me, taking into account our place in life and the realities of the way I’m wired.  I know plenty of other folks who’ve done things very differently and their kids are totally awesome.  Don’t let yourself get “should on” or think I’m preaching about parenting or anything.  This is just part of my story).

So, by the time each child was about a year, I had a rhythm in my life that had a set wake up time, set times for eating, diaper changes, and naps (read, mommy time).  This was nowhere near as specific as the schedules I’d tried to outline for myself numerous, numerous, NUMEROUS times in my life, but it was the first time I’d had ANY type of schedule that I stayed on for more than a day or two.  You could set a clock by my kids.  12:50 would roll around and they’d be yawning, rubbing their eyes, and ready to go down.

It made it hard because I sometimes felt tied to the house, especially with nearly three straight years of someone needing both morning AND afternoon naps.  But I guarded their naptime religiously because it was just so bad in the early days before they learned how to sleep, and they were just so miserable when they were tired.  So, a schedule was created that persisted.  This schedule gave me and the kids very real tent poles to hang onto when the storms of the last few years have hit.  And I absolutely credit them for keeping me from checking myself into the looney bin (just kidding.  well maybe a little.)

In the fall of 2011, when pretty much our whole world fell apart, Evie was done nursing, we knew we were done having kids, and I knew there was no way I was going to make it through the impending storm if I didn’t get some extra help to take care of myself.  I saw my regular doctor and got referred to a psychiatrist.  She felt that my feelings of overwhelm and anxiety were completely normal, given that we’d moved cross country just one year before, Kevin had started a new job, we’d had another baby, we’d moved three times in a little over a year, and my husband had just been diagnosed with cancer.  And those were just the big things!  She felt like she was seeing some depression as well, and so decided to try me on Wellbutrin first, because it has shown some positive effects for adults with ADHD as well as being officially prescribed for treating depression.  Of course, I was one of the less than five percent for whom the drug made my symptoms worse, and after figuring that out, we gave Adderall a try.

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Oh my word, I cannot even begin to explain to you how much of a magic bullet adderall was.  When I first tried it, I was understandably scared.  I mean seriously, it’s speed!  In fact, if you don’t have ADHD and take it, you’ll get high and be bouncing off the walls.  Trust me, the irony of giving amphetamines to someone with ADHD was not lost on me.  But the basic idea behind the science is that people with ADHD have a part of their brain that is under-active.  ADHD drugs rev up that part of the brain and bring things into better balance, thus enabling more stable energy and better focus, etc.

Well, Adderall did that for me and more.  I started taking it in January, so we’d been dealing with cancer stuff for about three months now, and Kevin was just starting radiation.  The first thing that I noticed was that I was no longer just exhausted by the energy it took to simply make it through the day.  I felt like I could focus more and everyday distractions didn’t derail me as much.  But I truly believe that the biggest reason that Adderall made such a difference was because I’d done so much other work before ever taking it.  Most people, when diagnosed with ADHD, start medications as their first lifestyle change.  For me, it was my last. So I feel like I was probably 75-80 percent of the way there, and the medicine was the last piece of the puzzle.

The kids and I have a high deductible HSA health care plan, which in short, means that we pay the first $10,000 worth of our healthcare before insurance kicks in (Kevin is on a different plan with his employer now).  So Adderall, even the generic kind, was costing me about $250 a month.  Plus we were paying full price for the psychiatric visits, which were about $300 each, and she wanted to see me monthly while we worked on getting dosages, etc. figured out.  But I’m telling you, even at $550 a month, I felt like the difference was worth the expense.  Still, I feared the cost was not sustainable, and so I researched less expensive drugs, and then brought them up with my psychiatrist to see if she thought any of them would work as well.  Turns out you can get generic Ritalin at Wal-Mart for four bucks!  Four bucks versus two hundred and fifty?  You bet we both agreed it was worth giving it a try.  It seems to have been working just as well, and now I am down to seeing the doctor just once every six months, which is much easier on the pocketbook.

So that’s where I stand today. This is a continuing journey of self-discovery, brought on only because of the sheer desperation and sense of failure that ADHD can engender.  But the thing is, I heard several of you commenting that you thought you might have ADHD, but weren’t sure.  Or you figured you didn’t, but could still really relate.  The amazing thing is that, besides ADHD medication, you can make use of any of these tools, even without a formal diagnosis.  I have really seen that most everything I read has practical applications for everyone.  And simply deciding that you aren’t happy with a certain area of your life, or aspect of yourself and knowing that you can go DO something about it, well that is a really great, healthy thing for anyone to do.

This does not mean you have to read and study and obsess every day about yourself or your environment.  It does not mean you have to buy a ton of stuff to “get organized”.  It does not mean that there is anything “wrong” with you (or me!)  I no longer see ADHD as anything other than a label.  I refuse to define this label as good or bad, a gift or a deficiency.  It simply is a pretty good description of how I “tick” and gives me a really helpful google search term to find resources that help me make my life better and help me to be be a happier person, and a better reflection of the God who created me.

RSH 1751

Here are some books, articles, and resources that I’ve found very helpful:

Reading

Delivered From Distraction by Ed Hallowell  My favorite comprehensive ADHD book

Margin: Restoring Emotional, Physical, Financial, and Time Reserves to Overloaded Lives by Richard Swenson  Oh my word, I cannot tell you how much this guy’s teaching changed my life.  The very concept of choosing to build margin into my life was so radical for me.  It felt like the opposite of productivity!  But it actually gave me the ability to do so much more, be so much more, and just be happier and less stressed.  This is not an ADHD specific book, and I recommend it to ANYone who feels like they are always overwhelmed, super busy, or that there’s never enough time.  It will change you and give you valuable, specific tools for carving out margin in your life.

ADD Friendly Ways to Organize Your Life by Kathleen Nadeau  THE best book on organization I have ever read.  I have put more things into practice from this book than any other, and most of them have “stuck”!

Untapped Brilliance A really great “beginner” book for ADHD.  I really felt like this book covered all the bases without being overwhelming.  It was not as in depth as Delivered From Distraction, but often that’s not what you need.  I got a lot of great things out of this book.

You Mean I’m Not Lazy, Stupid, Or Crazy?  By Kate Kelly  Not the best book in the world, but great case studies, and the title is just sooo affirming!

Websites

ADDitude online magazine with tons of great resources for children and adults living with ADHD.  Horrible design for an ADDer to navigate, but the content is so good, I keep coming back.  Really good articles.

Untapped Brilliance Haven’t explored this site too much, but it comes highly highly recomended from a friend.  The book was great!

CHADD local Atlanta ADHD support groups  I haven’t been yet, but I keep trying to!  I went to a support group a while back and was so surprised at how helpful it was

Disclaimer:  I used our family’s amazon affiliates code in the links to the books above.  If you choose to make a purchase through those links, a small percentage will go toward our family’s finances.  But I recommend the books regardless of that!  These are definitely my top picks for ADHD reading material!

My ADHD Story Part 1

RSH 1737

Kevin installed something on our website called google analytics.  It’s really interesting, and gives me insights into which posts I write get the most views, etc.  While it only gives data for as long as it has been installed (a few weeks), I was surprised to see that the most read post was this one, which is the first time I’ve opened up about some of my struggles with ADHD.  It also got more comments than anything else I’ve written.

Now just so we are clear, this blog has a few specific purposes for me right now.  First, it’s an outlet for me to process everything we have been going through.  I find that in writing something out, I am better able to have a perspective on my feelings and to come out healthier on the other end.  Secondly, it’s a way for me to share cancer updates and simply the goings on of our family with you our friends.

But since so many people seemed to enjoy reading about some of the other, non cancer and non direct family related things I have to say, and since I’ve wanted to write about other stuff for a while, I thought I’d try to share a little more on some of those topics.

As you know, I have ADHD.  I wasn’t diagnosed until I was 27 years old, and the diagnosis truly changed my life.  I had struggled with years of feeling, well, lazy, crazy, or stupid.  I had (and still do to some extent) struggled with poor social skills, which translated into challenges making friends, which translated into periods of my life where I’ve struggled with depression.  Finding out I had ADHD was not exactly earth shattering news, but after I got over the initial shock and mourning process (I’ll write more on that later) I found that knowing I had ADHD gave me access to many many wonderful tools that have changed my life for the better.  And the beauty of it all, is that anyone, even folks who don’t have a formal ADHD diagnosis, can make use of these tools in whatever way they serve you best.

Okay, just so ya’ll know, the title of this blog post was originally “How to Prepare for Guests… Guest Bedroom Reveal” but obviously I got off track somewhere, so that post will come next.  I realized I’ve written my “intro” so long, that it pretty much deserves a full post.  How’s that for distractable?  But seriously, I’ve gotten SOOOO much better!

RSH 1741

Anyway, back to ADHD as a tool.  I want everyone to know that I do take ADHD medication.  And I’m not ashamed of it.  But I only started taking medication about eight months ago.  Up to that point, I had done an intense amount of work non-medicinally.  Some of that was diet and nutrition changes, like cutting out artificial colors and flavors as much as possible and taking a multi-vitamin and omega-3s.  This is because there is some evidence that artificial colors and flavors can make ADHD symptoms worse, and I figured they’re probably not very good for me anyway.  And the vitamins and omega-3s are because most people with ADHD have vitamin deficiencies, and there is pretty solid science for omega 3 fatty acids that shows improvement in focus as well lot’s of other health benefits.  But beyond that, all of the other changes in my life were more “procedural”.  They involved learning about how my ADHD brain works, figuring out what areas of my life I was unhappy with, and accessing ADHD tools to help me reach my goals or find contentedness in those areas.

I thought some folks might find it interesting to hear my ADHD story.

People have told me I talk too much.  When I was little, I remember my siblings and cousins would sing the oldies song “You Talk Too Much” to me in a form of gentle teasing.  But I remember that it hurt because the truth always hurts.  But I was six, or eight, and I had no clue what to do about it!  I would try really hard to just shut up, but that rarely worked.  Thoughts would come into my mind and go straight out through my mouth.  I interrupted people all the time (still do) and was not good at listening to what other people had to say.  It was a vicious cycle, and the biggest thing I remember about it was that it seemed to be a big impediment to making friends.  I have a twin sister, so I kind of had a “control” to compare myself by, even though we were not identical.  She seemed very good at socializing and always had friends for as long as I could remember.  My own memories are more of tagging along, feeling left out, or just being alone.  Now who’s to say how things really were, but it doesn’t really matter.  Just that I felt from early on that there was something “wrong” with me, or so I thought.

The other thing I can remember from very early was struggles in school.  I always had a pretty good sense that I was bright.  A lot of things came very easily to me, like reading. At the same time, one of my earliest school memories was having to sit inside during first grade (In Mrs. BeeBee’s class!) during recess because I hadn’t finished my work.  I remember sitting there and thinking, “Why can’t I just finish this work?  I know how to do it, it’s not at all hard.  But my hand hurts, and I don’t want to write my words five times each.  I already know how to spell them.  I knew how to spell them before she gave them to me.  Plus, I just can’t even figure out how to get started”.  If you remember my post from yesterday, I lamented that I hadn’t written a post in nearly a week, despite wanting to and trying to every day.  Yes, this is an area of my life, sort of a combination between procrastination and mental block, that still dogs me to this day.  I’ll write more about coping techniques later.

That was the beginning that I can remember of school challenges.  I’m pretty sure I enjoyed preschool and kindergarten.  I remember liking them, and feeling on top of things, but from first grade forward, I always felt “behind.”  I felt behind in my classwork and also in the social world.  Ironically, I often tested into gifted programs or advanced classes.  But I could never get my work done, especially homework.  I would most of the time forget, or if I would remember, it would be the morning of, in the class, just minutes before it was due.  I was smart, but I wasn’t that smart, and it was impossible to get more than a few problems scribbled through before I had to hand it in.  I remember wondering how everybody else did it.

I know my parents tried to help me.  There were parent teacher conferences, with the constant refrain, “Rachel is just not living up to her potential.”  That word dogged me all through elementary school.  It was yet another indicator of my failure, and somehow it was now a personal failing, because, you know, if I really wanted to, I could do my homework, complete my classwork, and be able to interact normally with the other kids.  Because, you know, I had all this potential.  I know of course that those words and many others were said with love, but they constantly stung, again and again, because no matter how hard I tried, I just couldn’t measure up.  I often felt like a broken record… “I’m sorry Mrs. Bradlely, I forgot.”  I would almost always have zeros or incompletes for homework or projects, and then 100s for tests.  Like I said, this only served to reinforce my feelings that I must be lazy.

There were highs and lows throughout my K-12 schooling, sometimes with me hitting a successful patch, where I did well in an advanced class, but then other times, I would utterly fail and have to take a course in summer school.  The entire time, I read voraciously, and that became not only an escape, but a parallel education of my own.  If only there was the internet in 1990, I might have done enough googling to figure out what was “wrong” with me and find some answers!

But this was a time when ADHD was not often diagnosed, and there was controversy as to whether or not it was even a real thing or just kids with behavior problems.  Add to this that I didn’t exhibit some of the famous signs of ADHD, like hyperactivity.  I talk a lot, and I fidget a lot, but I can also sit for hours reading a book in which I am engrossed.  Plus, I think I read somewhere that even now, girls and women are much less likely to be diagnosed than men and boys.

Okay, so enough background from my childhood.  I struggled through and barely managed to graduate from high school.  The irony is that, while I had a 2.8 GPA (and even that was bolstered by high grades in music and drama classes), I had a very high SAT score, and a perfect score on the verbal section.  And I had failed two classes in high school!  Plus, I had been kicked out of the gifted program not once, but twice in elementary school, and I had been placed in advanced math and science and then been “downgraded” more than once throughout middle and high school.

RSH 1751

In college, though, something started to click, and I think it had a lot more to do with the way college works.  First of all, it was my choice to be there, and secondly, I was choosing what I wanted to study.  Add in that the teachers didn’t care a whit whether I’d done the reading and there was no homework in most classes, and I was in heaven!  For whatever reason, I did so much better in classes where there was only a paper and a final exam.  I still struggled with procrastination, with many a paper started at 10PM (or 2AM) the night before it was due.  But I managed to get through on the strength of my writing skills, and I was also unwittingly learning something about the way my brain worked… It actually did better under pressure.  Now, I hated writing my papers last minute.  Every time I pulled an all nighter, I swore I’d never do it again.  But the one time I actually paced myself and wrote a paper the “right” way, by brainstorming, outlining, drafting, and re-drafting over a period of several weeks, the paper wasn’t very coherent and I received my lowest grade.  What I was learning, though I didn’t have words to describe it, was that I had a powerful gift of something called “hyperfocus”.

This is a trait that many people with ADHD have, and it can be a blessing and a curse.  Hyperfocus allows a person to “get in the zone” and often do incredibly creative things like edit movies or write books in these crazy long spurts.  And I have been able to use it in those ways at various times in my life, but in my struggle to get “in the zone” I have also hyperfocused on less “productive” things, like hours spent browsing pinterest or copiously researching some new tool that I’ve decided I need. (Case in point, last night I believe I researched timers on amazon for two hours.  Seriously.)

RSH 1746

Anyway, I took a long and ambling path through college, laced with a semi-successful acting career.  I think I went to seven colleges in as many years.  It took me about ten years, but somewhere along the line, I was able to get it together enough to get accepted into and graduate from UCLA.  I ended up getting married to Kevin in between my “junior” and “senior” years of college.  I was almost 27 years old.  During my senior year, which was also my first year of marriage, and a year in which I planned a wedding in two and a half months and moved not one, but three times, I started to have meltdowns.  It was the spring of 2006, and I was struggling through my final quarter at UCLA, and almost every morning that Kevin would leave for work, I would end up in tears somewhere in our apartment.  I couldn’t figure out why or what was going on.  I was stressed out and struggling to get focused, but that was nothing new.  After several false starts at student psychological services, (the first two psychiatrists interrupted me and simply asked what kind of medicine I wanted) I ended up in the office of the head of the department.

I had broken down in a professor’s office just days earlier when I was yet again late on a project.  After sharing a little with her, she asked me if I thought I might have ADHD.  I told her I’d wondered at times, but I didn’t think I had all the signs, primarily because I assumed people with ADD or ADHD were always bouncing off the walls and had tons of energy.  I often felt completely sapped of energy, and no one had ever described me as hyper.  But after she shared with me the traits of her son and daughter, who both had ADHD, albeit in very differing forms, I was convinced enough to pursue things further.

Which brings me back to the psychologist.  After about ten minutes of talking and then going over some simple ADHD checklists and questionnaires, she told me that I was absolutely textbook ADHD.  I had every single trait in the DSM except for those regarding risky behavior.  Her prescription for me?  At least an hour of outside time every day.  At least an hour of physical activity every day.  At least a half hour of some sort of focusing, meditative, and prayer work.  And a time management schedule.  That was it.  Nothing magical.  In fact, these are practical things that are good for most anyone.  I was able to put some things into practice immediately, like being outside and getting a little physical activity.  I was amazed at how much of a difference it made just to get outside, even for a minute.  I have since managed to prioritize at least this one thing in my life.  Sitting outside has such an amazing, calming effect for me.  And I often feel energized at the same time.

RSH 1736

Check in tomorrow to hear the rest of my story.

Candace… Part 2 and the rest of the melanoma recurrence story

Okay, you know you really have a problem with ADHD when you have 16 unfinished blog post drafts, but haven’t posted anything in a week.  Le sigh…

And also, these two blog posts shouldn’t really be called simply “Candace” because it’s really the whole story of Kevin’s recurrence.  But whatever.

IMG 0037

If you remember where I left off yesterday last week, God had very clearly orchestrated putting someone in my life who was able to offer some empathy during the difficult time while Kevin and I were plodding through the maintenance phase of his interferon.  And two days after I met Candace, Kevin and I visited Dr. Lawson’s office, only to hear that they were concerned about how sick the interferon had made him, as well as his large amount of weight loss, and that they were ordering scans.

We went to lunch that day, and I pretty much sobbed through the whole meal.  I remember Kevin asking me what I was thinking about, and telling him, “I’m thinking that I don’t know if you want to be buried or cremated.  I’m thinking that I don’t know how to pay the mortgage!  How am I going to live without you?  How am I going to raise two kids without you?!”  And I remember him telling me, “I’m not going to die today.  So let’s just get through today.”

RSH 1520

On Thursday, he had a full body PET/CT Scan and a brain MRI.  Even though I had been devastated after the initial doctor’s appointment, by Thursday evening, I was at peace and hopeful that maybe, just maybe, the scans would come back clear AND Kevin would get to stop interferon.  The kids were still at my parents’, and Kevin and I went to Centennial Olympic Park to relax for the evening.  I remember lying down on a quilt next to Kevin, imagining how wonderful it might be if we could have our old life back.  Kevin had been instructed to stop interferon immediately, and he was already feeling better.  The weather was warm, but with a breeze, and I remember vaguely thinking back on meeting Candace the previous Sunday.  I wondered about the details of what all they had been through, and wondered if she had had moments like this.  We went home feeling calm and hopeful.

IMG 0892

Friday morning Kevin went to work as usual, and I was getting ready to run some errands with my neighbor Maiya.  She called to tell me she was at my door, and as I was running downstairs to let her in, the phone rang again.  The number was an Emory prefix, and when I answered, it was Dr. Lawson’s nurse.  I remember instantly feeling relieved, thinking that it must be good news, because it was the nurse calling, and she was calling me, not Kevin.  And so it felt like a double whammy when the next words out of her mouth were, “You need to bring Kevin in as soon as you can, because the scans are showing some “possible new growth” in his face and neck.”

What?

As I hung up the phone, I dissolved into my neighbor’s arms, sobbing uncontrollably.  After a few minutes, I finally pulled it together, and made new plans for the morning.  I picked up Kevin and we went in to Dr. Lawson’s office, where he was examined and a fine needle aspiration (biopsy) was performed to confirm that the spots found by the scans were, in fact, cancer.  A spot on his liver had also glowed on the PET/CT, so a liver MRI was ordered for Saturday morning.  The one piece of good news was that the brain MRI had come back clear.  By Monday morning we had confirmation that the spot on the liver was cancer as well, and by Tuesday, we were going over treatment options.

RSH 1315

My sentiments exactly

I don’t remember exactly when, during those crazy few days, that I texted Candace, but it was definitely after we had found out about the recurrence.  At some point, we found the chance to talk on the phone, and I asked her to tell me all of Stuart’s story.  I was floored by some of the similarities.  While it was a different cancer, Stu was treated at Emory, like Kevin, and he also underwent inpatient treatment with the same regimen that Kevin was about to undergo.  He was treated in the same ward, and even on the same floor as Kevin would be!  Candace knew all about hospital life, which Kevin and I had mostly avoided up until this point.  We were now looking at three months of on/off inpatient treatment.  After she had shared with me everything about her own experiences walking with Stuart through their cancer battle, she also shared with me a wealth of tips for life in the hospital.  I asked if she would come with us on the first day to help us get acclimated.

Once we had gotten our treatment plan figured out, we worked on plans to make a trip to Los Angeles to visit with family and friends (Kevin was born and raised there, and I lived there for most of my 20s).  My amazing sister in law Jenn got into high gear and within hours had booked us tickets for the following week.  We took a whirlwind, exhausting trip to LA, where, as you know, we left the kids for the duration of Kevin’s treatment.  We flew back on Sunday July 8th and walked through the door to our house at 8:45 in the evening.

At 9:00, friends and family joined us for a time of prayer and scripture reading to prepare our hearts and spirits for battle.  Then we quickly unpacked from the LA trip and packed for the hospital.  Candace and her husband, who we really barely knew, but had this new, terrible thing bonding us together, had joined us for the evening.  When it came time to pack, Candace, Becky, and my sister started busying themselves getting everything ready.  For the umpteenth time this year, my brain was fried, and I certainly couldn’t think about what I needed for a week at the hospital.  Candace pulled out this huge bag of stuff and started sorting it out in and amongst the things my sister was packing for me.  I couldn’t believe it!

RSH 1549

She’d gone and bought very specific, thoughtful things for me, like a toiletry bag filled with unscented shampoos, soaps, and deodorants (she remembered that Stuart’s nose was VERY sensitive during treatment).  She’d also gathered things that I never would have thought of, but proved to be oh so important during the especially scary parts of treatment.  She’d packed large blank posterboards and sharpie markers and used them to help me write out verses and prayers and tape them up onto the hospital walls.

RSH 1556

When Kevin was in the midst of rigors, I would look around the room and just start reading off the verses and prayers that I saw.  They were a constant help in times of need.  She also thought of what seemed like a million other little details that no one would have thought of had they not already gone through this.  Plus, I’m pretty sure her brain works a lot like mine, and she knew that I would need things to feel cozy and comfy, almost like a dorm room, for my own sanity.

RSH 1575

Not quite like the dorm rooms we remember in college…

Here’s the thing.  I’m not writing this stuff about Candace to say, “oh she’s this amazing new friend and I just love her so much!”  Sure, that’s definitely true, but I have SO many amazing friends right now who have all done so many things for us.  And I love them ALL so much!  But to me, my sense of awe and gratitude comes not so much from Candace, but from God, and how in His absolutely perfect timing and wisdom, He would place someone in my life who KNOWS, who truly KNOWS.  And that He would do it just days before this next chapter in our journey would start.

RSH 1569

I am in awe of a God who Himself KNOWS, oh so truly KNOWS our pain, yet would take the time and interest to demonstrate that truth to me in such a physical, tangible way this side of heaven.  That is an amazing God.  God has met our needs every step of the way.  Do I wish we didn’t have cancer at all?  Absolutely!  If I had it all to do over again, would I have chosen this path?  Absolutely not!  And I make no apologies about that.

BUT, the one thing that I do know, and I know I’m starting to sound like a broken record here, is that God is GOOD, and he LOVES us COMPLETELY.  He wants nothing but good things for us, and in every detail, as we make our way through a sinful and broken world, He is still present, powerful, and active.  And that is why I wanted to tell you all about Candace.  I hope you can hear His message of active, ever-present love through this story.