Spring is Here

It’s been a rough week.

The bell has been rung five of the past six nights.  (That’s a little misleading.  I think it only rang one night.  The other four times, she lied awake in bed until she heard me stir in the other room before ringing so as not to disturb my sleep.  Even in her suffering, she thinks of others first.)  I haven’t gotten much sleep. My wife has gotten even less.  She has been very ill the past few days.  Her insomnia has been severe, she had some gastrointestinal issues, and she has just had the general, overall feeling that she describes as “her body shutting down”.  What’s also very troubling is that two of her issues that had improved have worsened:  POTS (postural orthostatic tachycardia syndrome) and neuropathy.

I’ll get more into the specifics of both of these two conditions in later posts.  The thing I wish to talk about today is the bane of many chronically ill people’s existence: the relapse.

In an earlier post, I had mentioned how my wife had dragged herself to her grandmother’s funeral three weeks ago.  She’s still suffering the consequences.  When healthy people go out, we are subjected to all sorts of nasty things, both natural (viruses, bacteria, molds, fungi) and artificial (toxins, radiation, etc.)  Our immune systems are functional enough that even when exposed to these bad actors, we usually don’t get acutely sick (obviously, one whiff of airborne asbestos isn’t going to make you sick, but years of exposure will.  That’s a different story.)  Sometimes, however, we are subjected to a level of exposure that does make us ill.  Then we get sick.  Then we get better.  People with healthy immune systems are like rubber bands; they get stretched, then they return to their original shape once the load is removed.  To put it in dorky structural engineering terms, healthy people are elastic.

Not so with many of the chronically ill, particularly those who have weak immune systems.  First of all, any exposure almost certainly results in an adverse reaction.  Their threshold for getting sick is much lower.  But the real insidious thing is that, unlike the rubber band, when the load is removed, they stay stretched.  To continue the structural engineering analogy, you could say they’ve undergone a plastic deformation.  The load has caused their bodies to yield.  They do not return to their initial condition.

Now if you had a steel bridge girder that had yielded and plastically deformed, you would repair it.  You would reinforce it, shore it up, or do something else to help it regain its original strength and form.  Now let’s pretend that while you were making these repairs, another over-loaded truck drove over your bridge, which not only undid all of your repairs, it returned the damaged girder to its original state of disrepair.  That’s what happens to some of the chronically ill when they get sick.  They don’t just get a cold or the flu and get better.   They get the illness, the illness is usually more prolonged, and then once the original germ has left, they usually find that they have been significantly set back in their long-term recovery.

It’s bad enough that she now has to deal with the worsening of her POTS and neuropathy.  The POTS, as terrifying as the symptoms can be (dizziness, shortness of breath, pounding and racing heart, feeling very faint, inability to sit up or stand without exacerbating the symptoms, nausea, uncontrolled shaking, sometimes even convulsions, and just a general feeling that your body has no energy) can be dealt with through diet (adding salt to food, adding electrolyte drops to water, Endure is the particular brand we use), being religious about hydration, and generally trying to avoid over-exertion or prolonged standing ( a few minutes for someone with POTS.)  There’s not much you can do about neuropathy except suffer through it.  She feels as if her legs and arms are on fire.  The way she describes it, it reminds me of the time I was in boot camp on Parris Island.  We were out in the swamps training when the Drill Instructors ordered us to hit the deck (incoming artillery rounds were being simulated).  Well, I dove right into a fire ant nest.  I soon had several dozen up my pants legs.  They weren’t happy.  As anybody who lives in the Southeastern United States who has had a run in with these critters knows, there is a good reason they are called fire ants.  She often feels like she is covered with fire ants.  Sometimes it manifests itself as a buzzing or stabbing sensation, but tonight it’s burning.

Anyway, if all she had to deal with was the physical suffering, she’d breeze through it.  What is difficult to come to terms with is that a year of progress has apparently evaporated.  That hurts more than any neuropathy. 

Yesterday we were supposed to travel to my mother-in-law’s for the reading of her grandmother’s will.  The one hour trip is difficult for my wife on good days.  After the week she had had, including only getting 2 or 3 hours of sleep on Friday night, I didn’t think there was any way she was going to make it on Saturday.  I begged and pleaded with her not to go.  It would require too much effort from her.  She would definitely get sick (she picks up a bug almost every time she leaves the house), plus her mother’s building has a serious mold problem, and it always makes her sicker.  The car ride would hurt her neck.  It was going to be cold out.  I could go, place my phone on speaker, and we could have a conference call.  There was absolutely no reason for her to go.  It made no sense.

Through an enormous effort, she got up.  She got dressed.  She made it to her mother’s on time.  If you looked at her, she looked great.  She looked like any other young woman.  You would have had no idea how sick she was.  Of course, the trip made her sicker and the bell rang last night (or more accurately, first thing this morning.) 

Why pursue this illogical course of action?

Because she told me it was important to her to not let this illness keep her locked up.  She would rather face the consequences of going than admit that she was unable to leave her house for three straight weeks.  That’s answering the bell my friends.

We made it there.  Considering the circumstances, it was actually a pleasant family gathering.  It was a time to remember her grandmother and to look at some WWII era black and white photos.  Seeing the photos of her grandmother as a teenager was the first time I ever noticed the resemblance between her and my wife.  I even got to hear my wife laugh, a deep belly laugh.  I’m not going to get into what made her laugh so hard, I will never understand some aspects of her sense of humor (just like she will never understand why I watch football), but I was just so happy to hear her laugh again.

So here it is, March 1^st.  Spring is here! 

I got out of bed this morning, and it was 12 degrees and snowing. 

My wife is very ill.

My life is pretty far from normal.

So how do I feel?

I’m full of hope.

In church this morning, I listened to the story of Abraham and Sarah, and how they had a child against all odds.

Then, I check my e-mail and learn that good friends of ours, who have been trying for a long while, are expecting.

Even though it looks bleak and white and cold right now, I know that soon everything will be sunny and green and alright.  Soon, here, is a relative term, but I know that in the end everything will be OK.

When you are dealing with life’s traumas, tragedies, trials, and tests, particularly those of the extended variety, it’s easy to let yourself become numb.   It’s a natural defense mechanism to prevent the hurt that seems to come all too often.  But you can’t turn off the negative emotion without turning off the positive. 

I think that’s an easy trap for caregivers to fall into.  We often become numb to the suffering around us.  Sometimes, it’s the only way to deal with it.  If you’re a caregiver and you feel numb, like you’ve lost the feeling for the person you look after, you shouldn’t judge yourself.  It’s natural.  I’ve often felt very guilty about losing that empathy, but I’ve come to realize that it’s a normal thing, that the numbness will pass, and that you shouldn’t beat yourself up over it. 

Lately, I’ve kind of gone into one of those numb periods.  Maybe that helps me to keep going in some ways, but it’s come at the expense of losing the empathy I have for my wife.  That empathy makes me a better caregiver.  To feel it again, I’m going to have to open myself up to the entire spectrum of emotions, including the horrible ones.  To open myself back up to the entire spectrum of emotion, I’m going to have to pick one to start with.

So today, I’m joyful.  I can honestly say that.  And I’m going to let myself be joyful.  Sitting in the diner this morning listening to the chatter made me happy, whereas last week it left me feeling empty.  Looking over my computer screen and out the window at the cardinal sitting in the tree, the vibrant red in stark contrast to the white snow blowing all around, is filling me with wonder.  Being joyful is a huge risk.  I know that the bell could ring before I finish typing this sentence, and this day could go downhill fast.  (She’s still sleeping soundly in the other room.  Phew.)

But if my wife can risk leaving the house yesterday to prove that this illness won’t keep her down, then I can risk being happy to prove that her illness won’t keep me down.  If she can try to better herself at the risk of horrible suffering, then I can try to better myself at the risk of feeling a little sad.

Spring is here.  Let it snow.