My Journey

Since my last post, things have been a whirlwind.  On Wednesday, I had my MRI.  Before I arrived, I took my suggested dosage of four pills to calm me down, get my mind off the fact that I would be stuffed inside a coffin-like machine . . . for over an hour while my body was scanned . . . to determine if I had “white matter changes” . . . which would then mean I am susceptible to developing muscular sclerosis in the future.  Because I couldn’t drive in my drug-induced confusion, my sweet mama and fiancé accompanied me . . . and we all trooped inside the imaging center together.

From the moment I stepped in the door, I was whisked away.  I thought for sure I could convince the nurses to allow at least one of my family members into the MRI area with me, but they scooped me up so fast, I didn’t even have a chance to turn around to say bye to my mom or James.  Down the hallway, in front of a locker, I took off all metal objects — my sweatshirt because it had silver “ring hooks” on it, my earrings, and necklace.  Then time to go.  I thought I’d be okay.  I thought I could surprise everyone, show them the meds really helped.  . . . I thought.

The nurse told me to lay down on the bench.  Fine, expected.  She explained I’d be pushed back into the MRI machine.  Again, fine and expected.  But what I didn’t expect was this Silence-of-the-Lambs type of head-holding device to be thrust and locked not only over my entire head, but also my shoulders and chest.  I freaked out.  “WAIT!” I yelled to her.  She took the torture like mechanism away from my face.  “What IS that?!  Does that stay on me the ENTIRE time?!”  She explained, yes, it does . . . but didn’t exactly give an answer why and proceeded to put it over my face/chest again.  “NO!  PLEASE wait,” I said, struggling with what was happening.  If I could just get a grip on what she was doing and what this hour would entail, I may be okay . . . if things weren’t so rushed, hurried.  “Do you have to lock it in place . . . or does it just sit there?”  If it just sat, I think I could make it out alive . . .  “It locks into place . . . like this” and here she shoved her body weight on my face and shoulders until the mechanism popped into place four times.  I may have let out a little scream; I may have bolted upright.  What I do know is that I ordered her to take off the head-gear.  I know; I sound ridiculous, but listen — the MRI was enough.  I had prepared myself for that; no one gave me the warning though about this body-part-locking piece of plastic.

After the nurse removed it, I began to cry.  Since this eye mess, it seems that’s all I’ve done recently.  I was past a point of caring who I broke down in front of.  Who thought what of me.  Who I begged in order to bring my family members to me.  I just needed some type of normalcy . . . so I once again pleaded for my mom or fiancé to come into the room.  The nurse disappeared and the returned moments later with my mom . . . then I was instantly ordered to lay back down.  My mom later admitted she knew I was scared of the MRI, but didn’t know what had caused such a commotion from me . . . until she saw the Silence-of-the-Lambs device herself . . . to which she said in her mind, “Oh shit” (and PS-this coming from a woman who thinks “shut up” are bad words together).  At seeing the head-gear, she calmly said, “Honey, I think you should close your eyes.”  Already there, mama . . . already there.

So the rest of the MRI went off uneventfully, thank goodness.  James waited for my mom and I to return to the waiting area . . . and my mom stood beside me the entire hour, rubbing my feet and calves and letting me twirl my grandma’s wedding and engagement ring around her finger.  And then, that was it.  We got a six-minute warning that the MRI would be over . . . and before we knew it, the machine was sliding me back out into the room and part of my nightmare was over.  We could now go home.

* * * * *

Thursday was upon us before I even had a chance to blink.  I guess I should contribute it to the liquid MRI pills.  After the meds and the stress, I don’t even remember the drive back home, going to sleep that night.  In fact, I woke that afternoon and was completely confused about where I was, what happened and where James had disappeared to.

I had taken off of work Thursday because the doctor had laughed when I asked if I’d be able to go in.  “Trust us — The medicine will be with you most of the day.”  And trust I do, now.  So I made a comfy bed on the sofa and did something I hadn’t done for a few days — breathe . . . until that is, I got a call from Doctor Thurston’s office.  Doctor Thurston is my precious bow-tie wearing eye doctor who ordered me to get the MRI stat.  I didn’t recognize the number so I let it go to voicemail . . . and a voicemail was exactly what I got — a very nervous one.  “Hi, Laura.  This is Debbie from Doctor Thurston’s office.  We — um, have the results from your MRI back . . . and um — Call me, okay?  Call me AS SOON AS YOU get this.  Call me.  If you can’t get me at this number, call my direct line.  . . .  And if I don’t answer there, call this number and have them page me.  Call soon.  Okay?  . . . Okay, bye.”  That scared me.  Debbie happens to be a kind of breathless person, someone who seems to be thinking a million things a million miles a minute, but this voicemail seemed more urgent than her normal tone.  I called right away.

Debbie explained, “Your MRI results show you have white matter changes and an enhanced optic nerve which is why Doctor Thurston suggests you start your IV steroid treatments as soon as possible and we have you booked for tomorrow morning.”  One breath.  I don’t think she paused once throughout the multiple sentences . . . which became one big, fat sentence.  “What does that mean?” I questioned.  She couldn’t say much, just that Doctor Thurston wanted me to know this as soon as possible.  “What am I supposed to do?”  “Go to your IV steroid treatment appointments.  They last for three consecutive days.  The first one may take about two hours, but the others are shorter — about an hour-long.”  “Wait, wait, wait,” I ordered to her again.  The news was slipping out of my grasp, things were moving too quickly.  I couldn’t hold on.  Just give me a second, Debbie.  I explained I was starting to get nervous.  Again I asked, “What does this mean?”  She said I could do one of two things — I could start my IV steroid treatments now and then see Doctor Thurston Tuesday . . . or I could hold off on the treatments until I see Doctor Thurston, “but,” as she reminded me, “Doctor Thurston highly suggests you start your treatment now.”  Fine.  I see no point in waiting.  It doesn’t change what I have to do.  But more important questions were weighing on my mind — “Does this mean I have MS?” I asked.  She gave me a round-about answer that answered nothing.  “I would like to speak with Doctor Thurston,” I announced.  “If I have MS . . . or he thinks I may get MS, I want to talk to him now.  Or he can call me.  Soon.  I want to talk to him.”  She rapidly told me he was doing hospital rounds and does not take patient calls during that time.  “He rarely even calls me back.”  “Try,” was all I said, and we basically ended the conversation with her promising to get in touch with him.

I listened to the silence on the end of the phone for awhile.  Why was she so nervous, anxious, worried?  Why?  Why wouldn’t she answer my questions?  Why wasn’t there anyone to answer my questions?  I knew my reality was slipping again, more quickly.  I knew I was about to cry (again).  I called my mom . . . but she was at work and couldn’t talk.  So I called my dad.  He listened patiently and told me not to overreact until I had a chance to talk to Doctor Thurston . . . in six days.  He reminded me that this news wasn’t anything new.  “Doctor Thurston has already told us all of this the very first time we met with him.”  But why did it feel so different now?

I called James, woke him up.  By this time I was in a panicked state.  I just as rapidly explained what Debbie had told me and asked — over and over again — if this meant I had MS?  Have I said already I am marrying the absolutely most amazing man?  I am beyond 100% convinced there is no one better than him in the world.  He calmly explained this does not mean I have muscular sclerosis.  The “white matter changes,” he said “show I have an increased risk of developing another episode” — which would then mean I have MS.  What’s another episode?  He reminded me, it means my limbs may not function like I’m used to, how I may feel like I’m dragging a leg, tingling in an arm.  But I do not have MS.  He concentrated on the good news — The “enhancement of my optic nerve” meant exactly what Doctor Thurston and all of the doctors before said, so we are on the right treatment path.  And he also stressed the IV steroid treatments were a good thing because “they greatly reduce your risk of having a second episode . . . which in turn reduces your chance of being diagnosed with MS.”

The phone was silent for a moment as I decided if I should unload this brick, this heavy issue that’s been sitting on my chest.  I haven’t mentioned it to James . . . except now, it must be out.  It must be brought into the open space that filled our cell phone connection.  And here I gave it to him, in a small dose.  I asked if he still wanted to marry me.  I mean, I knew his answer would be what it was — yes, of course.  But what I wanted was for him not to answer . . . for him to seriously consider this.  With our wedding approaching the 20th Day, of course this is something weighing heavily on my mind . . . and I want to make sure that he is taken care of, for his entire life.  If I have more episodes, more of what he and the doctors describe, I don’t know how bad it could get . . . and the last thing I want him to do is devote his life to taking care of me.  He’s already done so much . . . and he deserves so much more than I can ever give him.  I want him to be happy.  I want him to lead the most wonderful, normal life . . . and if that’s not with me . . . I would give him up . . . to make sure he was happy.  I could tell he knew I’d been thinking about this and he kept reassuring me that — no matter what — he would be there by my side, that he wanted to be.  “When we say our vows, we aren’t just saying them.  This is what it means.  This exactly.  For better, for worse.  For sickness, and in health.  To love and to cherish, til death do us part.  This is what that means.”  I want to say that made me feel better, but the truth is it hurt more.  I have the best fiancé, the best man will soon become my husband.  And from the first moment I met him, I also felt I didn’t deserve him.  He’s too good for me.  I want him to have someone who he deserves; someone who will make him so incredibly happy, all the time, every time.  I’m fine with the better or worse, with the sickness and health.  I want to cherish him and stay with him until death do us part.  But the honest part is, I don’t want him to have to go through that for me.  I want him to have the best life imaginable.

We agreed to disagree that he should be with someone better than me.  And in the end, I let him go back to sleep.  Poor thing.  Throughout all of this, he’s literally has gotten only a handful of hours of sleep a day.  Before we hung up, we made another promise — that I would call him if I needed to talk about it again, get it more clear in my head.  James, how I so dearly love you.

* * * * *

The next day brought with it my first round of IV steroid treatments.  Once again, my mama and James were there.  My mom even pulled this giraffe stress ball from her pocket to “keep my mind off things.”  So thoughtful.  My entire family is so thoughtful.

We got checked in and sat right down.  Time to get started.  Pack after pack were placed in front of me . . . a needle, tubes, steroid treatment and more.

Then, the needle was poked into my left arm . . .
followed by the tubing . . . and slowly, but surely the IV filled with steroids which dripped into my body.  We sat for about an hour, emptying out the steroid bag.  Things began to smell and taste metallic-y.  I tried to focus on anything but the fact that this needle, this tube was jammed up my vein . . . without luck.

The nurse, Susan, was such a sweetheart.  She explained just the other day, she had a man come in here with optic neuritis and he too had to have IV steroid treatments.  She said he told her that his vision improved greatly after the second round.  I hoped I’d have the same story to tell when it came time for my Day Two.

The weekend passed, one IV steroid treatment at a time.  My sister and mom went with me Saturday, James took Sunday.  Each time we went, I was greeted by more absolutely wonderful nurses.  From the woman I met the first time, Susan . . . to a different Susan . . . to Faith . . . to Reynell, all were the most kind-hearted, patient nurses I can ever recall meeting.  And somehow, they made the experience bearable; they made it okay.

Before I knew it, Sunday came and went and my last treatment was over.  Four big needles that drew blood and slowly poured in steroids . . . all in about a week.  But now, that part is over.  The only thing left is my bruised “needle” vein and red skin from the tape.

True, I do have the check-up with Doctor Thurston’s office tomorrow . . . but what I don’t have is a pounding headache from two different images my left and right eyes are putting out.  What I don’t have are crazy bright white lights and fuzzy vision out of my left eye.  In fact, what I do have today is about a 80% better left eye.  I’m just so grateful.  Grateful I’m improving.  Grateful I’ll be able to see everyone who comes out to celebrate our wedding in nineteen days.  Ever so very very grateful I’ll actually be able to see James, standing in that tux, us holding hands, slipping rings over our fingers, reading our vows to one another . . . and giving each other one of the most romantic kisses.  I’m so thankful I’ll be able to see him.

It’s strange.  I almost see my optic neuritis as a blessing because it reminded me of people I sometimes overlook or take for granted — my incredible family and friends that have surrounded me, supported me, held me up during this time.  From a best friend countries away who sent me an email the second I found out about my eye problem and she followed with little gifts every Friday to get my mind off of things . . . to a friend I used to work with who sent me the most touching, inspiring story about someone they know who had optic neuritis (I still think about your friend all the time, Paul) . . . to other friends at work who offered up a phone number of one of their family member’s whose been diagnosed with MS . . . to family friends I’ve known for years — all avidly praying for me — and doing incredibly thoughtful things like keep our guests in the dark during my bridal shower because the light hurt my head a few days after I was diagnosed with optic neuritis . . . and of course to my own family — from the hugs, sweet text messages to get me through the day, James’ family has constantly kept me in their thoughts since Day One . . . and to my own family who accompanied me to so many doctor’s appointments, an MRI visit, and treatment after treatment after treatments . . . and finally, to my fiancé, who I could not have done any of this without you.  You put aside everything in your life without a second thought and stood by my side, offered your ear at every second, listened to every word the doctor’s told me, and provided that moral support I so badly needed.  I do not know what I would do without my amazing family and friends.

James told me recently he doesn’t necessarily believe people are given what they can handle.  Instead, he thinks people are given what they and their support group can handle.  I’m beginning to believe this.

Author: L

Hi there! I am the impulsive do-er, the jumper, the one tugging to move past comfort zones to embrace a life of sheer surprise. I am a writer -- a pursuer of stories -- because I believe in the destination over the journey. I am a chaser of sunrises and sunsets and cherisher of the moments between. I have an overwhelming curiosity, an insatiable desire travel, and an obsessive yearn to turn dreams into realities. For all of these reasons, the word that best summarizes who I am is "seeker" -- I am forever a seeker.

Leave a Reply

This site uses Akismet to reduce spam. Learn how your comment data is processed.