Disability: Having A Sound Bite

Gasps greeted me as I walked into the exam room.  "Oh my- what happened to you?!"

Caught entirely off guard, I struggled for a response, but blanked.  There was an awkward pause in the room.  The problem was...

(Sporadic) Money Update: 2018, or, Imagine Me Rolling My Eyes

I am so sick of paying down debt.  So let's talk about it!

My husband and I are in the middle of this debt-paying thing.  At this point we have completed several of the most important steps:

- figured out how much debt we actually have, which is horrifying but necessary
- refinanced all of our loans for a lower interest rate (which will save us approximately $40,000 over the life of the loan)
- sucked it up and started paying ridiculous amounts of money on our loans

That means that we are in the "paying ridiculous amounts of money" stage.

Uncertainty, or, 2019: Midnight Tracks

I love planners; I'm a bit obsessed with them, really.  I've always had one.  I think by nature I'm a plan-maker, someone who takes the long view.  Years of practice and training have taken my penchant for journalling and turned me into a list-maker as well.  At this point, if I don't have a formal planner, I eventually clutter up my life with piles of to-do lists and thought fragments.  This year, when it became fatiguing to write, I tried to abandon my paper planner for digital alternatives that I can talk into, but it's not the same.  So a 2019 paper one it is.  Usually I get something with monthly and weekly pages, and room for notes - pretty standard.  My planner choice* is different this time, though.  For the first time, I want a goal-setting planner, I think for several reasons.

Uncertainty, or, 2018: A Retrospective

What a year.

Did anyone else have a really eventful 2018?  I certainly did.  The time passed so quickly that I'm tempted to say not much happened, but that is completely wrong.  Enough happened this year - and enough is happening next year - that I've decided to do something I've never done before and try to look back on the year as a whole.

Reflections on Primary Care

Just because I haven't written about burnout in a while doesn't mean I don't still care about it.

Over the past year or so, I've become an avid, sympathetic reader of a blog called Reflections of a Millennial Doctor.  The author, M, vividly details her struggle with burnout and giving up on primary care.  She fought so hard this past year, wrestling with whether or not to stay in her current practice or throw in the towel and try her hand at something else.  She recently admitted that she will be leaving her practice soon for a job as a hospitalist.  I can relate - not to the hospitalist part! I hate hospital medicine.  But her tale of getting bled dry by her clinic job resonated with me deeply.  Honestly, I don't know how her primary care dreams survived her training.  Mine didn't.

I remember being a medical student and writing an essay about the importance of trajectory change for my family medicine residency application.

Sometimes they live

A patient walked out on me the other day.

It doesn't happen every day, but it happens often enough.  I usually never find out why.  Sometimes it's to go pick up children or meet another time-sensitive obligation.  Sometimes it's to go smoke a cigarette or get a dose of drugs.  I think sometimes they get scared and feel as though running from the department can help them escape their diagnosis.  Whatever the reason, I learned early on that I have to be able to let those people go.  The other side of the patient autonomy coin is this: they're responsible for getting the care they need and it's not my job to force or coerce them.

Except when it is.

Sometimes they die

Honestly?  I hate traumas.

I can't stop thinking about one I got a while back.  Auto vs. motorcycle.  A nice young man had been driving at dusk - not texting or anything as far as we know - and turned left in front of a motorcyclist who wasn't wearing any gear.  He never even saw the motorcycle coming.  The driver in the car was fine.  The guy riding the motorcycle - another young guy, I never quite learned his age - became our patient.  I was the backup doctor in the room but it still felt like he belonged to me.

Traumas don't go the way you would envision from watching a show.

Suffering

It's 6am and I've been up for three hours, the consequence of coming off a long weekend of night shifts.  I read for a while, but as often happens to me, eventually I was driven to write.  And so here I am.

My hands are healing, I think, and my feet.  In retrospect I've been through this cycle a dozen times before and just didn't recognise it.  It matches what my neurologist told me about my disease.  It's a cyclic dance, led by demyelination, followed by damage to the axon, the long delicate wire of the nerve cell, as it loses its insulating myelin sheath.  I lose some function.  Then comes whatever healing the body can muster and some degree of functional improvement - all set against the relentless drumbeat of the disease state itself.  So I get worse, and then I get better, sort of.  What matters to me now is that I've crossed back over the invisible line that lets me use my right hand.  I can write again, so I can do my own paperwork at work.  I can hold a glass in my dominant hand without thinking about it.  I can put my car in gear without reaching across my body.  I can type a bit.  I'm definitely not back to normal.  I still wear a wrist brace (like this one) on the right about half the time since it's very fatiguing for me to control my wrist and fingers simultaneously.  I prefer to use a big silly-looking pen that's easier for me to grip.  I've switched my mouse to my left hand and don't plan to switch back.  And at this point I still can't really do repetitive tasks that require fine motor skills - scissors, suturing, chopping vegetables.  But it's so much better than it was.

Obviously it's going to get worse again eventually.

I've been thinking lately about suffering, and about God's purposes in allowing His children to suffer.  I have found myself crying out to Him this summer in confusion and pain.  Why, God?  Why this?  Why now?  Why my right hand, the hand I rely on?  Why should I suffer like this?  It's a hard question, and a nuanced one.  It's different from painfully pouring oneself out to serve others,  different from the direct and expected consequences of sin, different again from persecution for my faith.  This just... sucks.  It sucks every day.  And nothing I or anyone else did caused this.  I think the temptation is to see suffering as meaningless, just a random consequence of living in a broken, messed-up world, but Christians don't have that philosophical out.  We trust and believe that we have a personal God, one who cares for us and is invested in us.  So why the suffering?

Yesterday I sobbed through a talk given by Joni Eareckson Tada, a lady who is a staunch believer in Jesus, an author, speaker, and artist, and a quadriplegic since the age of 17.  I highly recommend that you listen to the talk, although if you're not dealing with personal hardship/ disability it may not resonate with you.  She confronts the endless gauntlet of her daily life (you'd better believe that being a sharp mind trapped in a useless body involves suffering) with a matter-of-fact courage that frightens me.  She does not spare anyone the harshness of truth.  I'll give you an example.  For anyone, but especially a quadriplegic, to say, There are better things than walking.  There are better things than the use of your hands, is deeply shocking, right?  But with reflection I've realised that of course that is true, especially for a Christian.  Jesus is better than anything.

The goodness of God is the truth that sustains a person through even the deepest darkness.  I thank her for reminding me of that.  Joni Eareckson Tada exemplifies for me the concept of suffering well, something she touches on in that talk.  It's hard for me to get my arms all the way around the idea, but I think it's a mixture of day-to-day grit and unswerving, joyful faith in a good God.  I don't know how to do it yet like she does (I'll grant that she's had fifty years to learn how to suffer well and I've had, like, two months).  But I think most people never learn how.  It's just not guaranteed.  And I think it's a lofty goal but a worthy one, this idea of suffering well as a Christian.  I have this disease.  There is no getting rid of it.  But to suffer well... if that is my race to run in this life, God grant that I might achieve that.

Spoons

A few weeks ago, my hand cramped solid around a woman's leg while I was trying to put a splint on her, and then went limp for the rest of the shift.  Let's talk about spoons.

News

I thought about being artistically coy in how I would introduce this post, but I can't bring myself to do it.  I got some bad news about a month ago and it has changed my life.

I was recently diagnosed with Charcot-Marie-Tooth disease.  In medical terms, it is a genetic neuromuscular disorder, caused (in my case) by a duplication of one tiny area of chromosome 17.  It leads to abnormal nerve structure and thus abnormal nerve signal transmission.  Over time, the nerves degrade and die off (this is called neuropathy), taking the muscles with them.  It starts in the feet and works its way up the legs, and at some point begins in the hands and works its way up the arms.  The rate and degree of progression is different for every affected person.

CMT is a progressive disease, and the form I have generally comes on slowly.  So it was with me, although I didn't know it.  I've been "clumsy" all my life, with weak ankles that are prone to rolling, and weak reflexes.  I've always gotten muscle cramps a lot.  My feet are always cold.  None of that held me back, per se, but there were a series of nuisances to be managed.  No stiletto heels.  Watch how you walk so you don't sprain an ankle again.  Do any workout besides running.  But otherwise, it was fine.  Then during residency, I started getting intermittent weakness in my feet and toes.  The cramps got worse.  I started having falls and trouble keeping my balance, especially when I'd been awake for long shifts or wasn't sleeping well.  People commented a few times on how my gait looked different, "like it's hard for you to walk."  They were right.  It felt very hard to walk.  I assumed I needed to sleep more and be more diligent about working out, chalked the falls up to residency fatigue, and kept pushing.

I know, I know.  I'm crazy.  No one in their mid twenties should be falling and having trouble walking.  I know.  But I... just didn't think about it.  I was trying to hold it together and finish training, and there was work to be done.  So I went to work.

Fast forward a few more years.  This spring I started tripping over my toes, and I realized I couldn't move them.  My right hand began cramping around my pen every time I picked it up.  I realized I couldn't feel the bottoms of my feet.  Then my knees started to constantly feel like they were giving out, and I finally got scared enough to pursue a possible diagnosis.  If you think a doctor can't have denial, think again; despite all of that I honestly thought they were going to tell me it was stress.  Instead, two neurologists and $3000 worth of tests later, I was given a diagnosis that explained every troublesome thing I've ever had with this body - and made it clear it is going to get worse.  And it has gotten worse; it's gotten a lot worse just in the past couple of months.  Apparently that happens sometimes.

I will be honest here and admit that I feel inexpressibly sad about it all.  I don't know what this will mean for my personal life or my career.  It's scary and taxing to try to navigate the sudden drop in my physical ability (a topic to discuss more in a later post).  I feel newly, terrifyingly dependent on Jesus, while at the same time I feel so confused that He would allow a time bomb like this to be seeded in my DNA.  I trust Him.  But I don't understand.

I expect the tone of this blog will change significantly from here on out but I don't yet know how.  I guess I'll just take it post by post and day by day.  But I knew that I couldn't blithely write about the happenings of my life and career while withholding this diagnosis.

On Terror

"EMS to ED."

My charge nurse hit the button on the transponder.

"This is ED, go ahead EMS."

"ED, this is EMS en route to your facility, emergency status - "

All the staff within hearing distance stopped what we were doing to listen further.

Change

So I'm changing things up for myself.

When I finished residency, you may remember that I was pretty much done with medicine but still needed to earn a living in order to pay off our debts.  I chose urgent care because I needed something that was simple in terms of the mechanics of the job and emotionally undemanding in terms of the patient care required.  I think urgent care is pretty much the pinnacle of that.  See patient, make 1-2 decisions regarding care, discharge patient, write short note.  Move on.  No call, no critically ill patients (most of the time), minimal paperwork, few moving parts.  The hiring process went very smoothly.  But for some reason that I barely understood given that I felt like I was aiming to get out of medicine altogether, I threw in an ask in my interview: I wanted to do a little work in my local ED if they were amenable to that.  It turned out they were.