Tuesday, May 31, 2011

7 Years Later: My, My, Look At Those Thighs

Early in my life I decided that I hated my thighs.   I mean, really hated them.  The problem was they were attached to me, yet I was at war with them...my own body.  For 25 years I was at war with them. 
The night after my first neurologist appointment a cease fire was called between my psyche and my legs in the shower.  I felt the water trickle over my body on the left side - light, warm, and comforting; my right side - sharp, stinging and muted all at the same time; I was regaining some feeling.  I was very aware of the contrast; I imagined what it would be to sense the left side on my right.  I prayed for that kind of healing. And then I think the brain lesion had something say; I think God said, "You have hated these legs for way too long.  They are yours.  You want them.  You really do."  I really did.  I grieved and felt free all at the same time.     

This is how it is when your life is turned upside down in a moment.  Any time of stillness brings up something unexpected; often overwhelming.  Plus - I was on a boat load of steroids, anti-seizure meds, etc.  We are whole people; that could have factored in.

Friday, May 27, 2011

7 Years Later: Hurry Up and Wait

Imagine how your lip feels when you go to the dentist.  The numbest stage: thick, thick, thick, heavy.  The phantom stage: "did I really just feel that twinge and tingle?"  ...and so on...to the final part where you think: "Sometime in the next 5 minutes I will feel 'normal' again."  That final stage is how I live with my right side now - 7 years later - I am thankful.  And the sea-ship that my body feels like it is on has found much quieter waters.  Most days, my imbalance is hardly noticeable and maybe even lulling.  I often find myself swaying to keep up; I don't think others even see it. 

I'm not even sure when my body arrived at this "baseline," this "new normal."  It must have been sometime in the last 7 years...SEVEN, 7, seven years.  That is a long time.

I am fast-forwarding too much as I write.  I am.  I want to HURRY UP.  Get to the good stuff.  The stuff about how I went through more and more hell, BUT that I learned so much about myself, life, God, others.   That my story winds through misdiagnoses, surgery, diagnoses, undiagnoses (which isn't even a word).

But in reality; in real time; although I wanted to hurry up, and deeply believed in the good stuff on the other end, I had to, (and have to?) wait: uncertain, suffering, waiting.  And wait some more...in a lot of waiting rooms. 

Thursday, May 26, 2011

7 Years Later: Half Numb

I think my first tears of this journey came in the MRI machine: such a solitary, isolating experience.  You lay there alone, prone, required to be completely still.  Only the hammering sound of the machine to keep you company.  There was nothing to distract me and my physical symptoms were suddenly more apparent.  I talked to God; I did not plead, I mostly wondered.  Something was definitely very wrong.  The slow burn of a new reality settled in. 

They found a white lesion through out my left corpus colosum: the "switchboard" of your brain; the means by which left brain controls the right side of your body and vice versa.  And one in my left temporal lobe.

My right side (draw a vertical line down the center of my body - half my nose, half my trunk, my right leg) had lost its ability to sense.  ("right side anesthesia" is the medical term; motor functioning intact, yet you need sensory input to achieve normal motor functioning).  Dizziness and imbalance are tame terms to describe the added layer of misery.

Back in the ER, with my faithful friend and grandparents, the news was the "best that could be expected."  "The good news is that you did not have a stroke and you do not have a brain tumor.  But it does look like this is first episode of Multiple Sclerosis.  You will need to see a neurologist right away to consider immediate treatment for this episode.  People don't die from this; your life is not at risk, but you do need to see a neurologist right away."

My M.O. in crisis: think, act, feel.  My brain was tired, the action for the day was over: I wept.

Sunday, May 22, 2011

7 Years Later: What a Day Can Bring

My story took a drastic and unexpected turn 7 years ago this July.  They say it takes seven years to recover from a brain injury, and since I am nearing that mark, I figure it is time to start telling my story.  Plus, I can hardly get by myself for more than two seconds without thinking about how to put words to this.  this.  ...story of mine.

So, to start, it is very strange thing to have an injury that no one can see.  We live in a world that values what it can see.  If you can see it; it is real.  So, an "invisible" injury has so many difficulties without even naming the symptoms.  "Well, you look good."  "Well...ummm...thanks. ? ." 

I went swimming on a Friday night.  A full time grad student.  A full time employee.  I was training for a triathlon that was scheduled in a few months.  I wasn't feeling great, but went anyways.  What was a little dizziness and fatigue anyways?  Stress?  Inner ear?  Swimming was low impact, so I picked that over running.

I went to bed that night satisfied.  I had just gotten back from a week out east for a dear friends wedding and time with family.  Work and school were good; my relationships were deepening; life was moving.  I was 25; not bad for 25.

And so when I woke up that Saturday feeling even more off than I had for the last week, I didn't think too, too much about it.  "Maybe I am just really worn out.?"  And so I sat down to read some and journal a bit.  The page was a little blurry as I read and it was hard to write, but again...worn out...tired?  I felt calm, but the symptoms were slowly becoming undeniable as my grogginess wore off.  "I think my right leg feels numb...and maybe my ear, cheek..."

And so I called: my friend, "I'm taking you to the hospital;" my mom, "Please go to the hospital."

Before I knew it I was in an MRI machine.