The Monster Under My Bed
Some of us as children see the monster under our bed. Late at night when mom and dad would shut off the lights, I could remember fearing that moment because in the darkness lurked the monster that was just waiting to creep from beneath the murky darkness beneath my bed and pounce upon me stealing me away into the night to do only God knows what to me. So I did what any respectable, intelligent child would do and I screamed as if bamboo shoots were being shoved beneath my fingernails until someone came and turned on the light. Ah yes, the light. It was like magic. It could disintegrate the monsters into a fine vapor in seconds so like any child I asked to keep a night light in my room to ward off the monsters.
The sound of dishes clamored in the sink, and the almost calming sound of the water flowing to purify our dinner plates could be heard down the hall as I lifted the shirt gingerly from a squirming twin girl preparing her for her bath. Her twin brother came racing down the hall giggling so I grabbed him too, or so I thought. My hand was tingling and numb and I missed him by nearly half a foot when I went to reach for him. My aim was never that off . . . still, I shrugged and attributed it to stress and continued to soap and bubble the babies in the berry smelling bath until they squeaked with cleanliness. I reached for Madison, again missing her by inches, but getting her out nonetheless, and next for Dale. I prepared the other three children in this fashion until all were clean, brushed and kneeling for prayers. As I went to kneel I fell. My leg buckled under me. It gave way under just my weight alone. My autistic son began rocking back and forth screaming, my eldest daughter came to my aid and the twins and Kiley, middle baby, sat and watched as she helped me to my knees again. What no one saw thankfully, was the dribble of urine trickling down my right thigh as she sat me up. I was mortified and terrified. I got the children through prayers and stood slowly to my feet fearing another episode of “Mosh-Pit Mommy” would happen and I would hurt a child in the process.
Once tucked in I called a friend, a nurse of twenty two years and asked for advice. She recommended I get to the ER fast or at least in the morning. She thought maybe some type of bad infection. I personally think she knew it was MS and didn’t want to tell me. Or perhaps she thought very strongly it was MS but felt there were a few things that needed ruling out first. My mind began to spin webs of doubt and fear so I did what I do best when I need to relax . . . I read. I knew I needed to prepare for a procedure in externship so I studied that and fell asleep.
The tranquil sound of Pachelbel’s “Cannon in ‘D'” played entirely by strings awoke me. It is what I set my alarm to. My room smelled of lavender, I remember that because I still had lavender blossoms in my room from Yoga the afternoon beforehand and I had left them on my nightstand. I inhaled deeply, taking in what was the beauty of the day. Truly, who could argue with beautiful music, soothing aroma’a and … and … as I opened my eyes, nothing. Well, nothing out of the central vision of my right eye and limited vision in the left coupled with pain when the eye moved. Like every corny movie I had ever watched with the sound of a scratching record in the background that indicates everything good coming to a screeching halt, that is what that moment felt like. Queue screeching record sound at this moment. I sat up like a bolt of lighting had struck me from the heavens and began rubbing my eyes as if I could magically rub the sight back into them. When the alarm in my house sounds though it meant that I had no time to ponder my plight … there were five children that needed to be up, dressed, fed and ready to depart for daycare and school. My autistic child Nicholas absolutely could not have breakfast delayed not even by a minute. Thankfully I was painfully aware of this fact and had everyone’s things laid out on the half-wall in the living room so that I could cook as they dressed and I could help them dress whilst things progressed on the stove without going to far. I also used to prepare several batches of pancakes ahead of time and just warm them up for occasions such as these. I made scrambled eggs to go with the pancakes, fed the children then realized … I couldn’t drive them in my condition. I grabbed the phone, called in a favor and off we went.
Once at my externship site, I immediately reported to my Dr. there at the facility and informed him of my impairment and asked him to take a look at my eye to see if he could see anything wrong with it. At the conclusion of his examination, he informed me that there were no corneal abrasions or tears that he could see, but my pupillary response time in the right eye was delayed. Known as Marcus Gunn Pupil or so I am told. I asked him what this meant, and he too deflected and simply replied that I needed to go to the ER. Having no vehicle to drive me I had to wait until my shift was over. A shift in which I spent taking pulse rates, and answering phones.
The friend that drove me to school also dropped me off at the ER and stayed with the children. I went in alone, scared and terrified of what they were going to tell me was wrong. An X-Ray, CAT scan, blood work later and they decided I needed a Lumbar Puncture and an MRI. By this time an eye doctor had also stopped by to visit with me and had determined that not only was I color blind to specific colors, I had a condition known as Unilateral Optic Neuritis. I was actually relieved to hear that because at least we identified the monster under my bed. The doctor just switched on the light only the light was still very dim. We didn’t know who the head monster was yet that was leading the utter revolt upon my life. The staff was certainly motivated to find out. That evening I left the ER with a diagnosis of right sided optic neuritis, hydrocodone for pain, and an appointment to have an MRI done.
One tiny white pill made the world spin and my eyes so heavy. My friend was so very funny with her use of the word, “Fork”. I kept repeating the word “Fork”, and wondered if Spork’s were the result of Spoon and Fork procreation. I was mumbling this as I walked into the magical gateway commonly known to others as the MRI. I was okay with everything till they wanted to strap my head down with a hannibal lecture like contraption then I sobered up with an immeasurable speed and began panicking. The nice nurse gave me some medicine in my IV port that made it all go away though. I think she called it Versed. She is my hero and monster slayer extraordinaire. I awoke to the sound of running water, which incidentally helped me fill their request for a sample, and the smell of cucumbers and watermelon, which made me desire a slice of watermelon. It was a truly suggestive place I was in, but they catered to those who were very phobic and that is most assuredly me. My chariot was waiting outside for my clearly drugged and curious self to depart the suggestive MRI facility with their melons and cucumbers and waterfall thoughts. I was fairly sleepy most of the ride home until my friend asked how I was feeling and I replied in what I can assume was broken latin from my younger years . . . “Sic infit” So it begins. Then I drifted back into a slumber.
Sunlight seemed to find its way beyond the shades that hung at my windows and melted the sleep from my eyes in symbiotic union with the ringing of my phone. Sunlight on my eyes set to the music of Johann Sebastian Bach was a beautiful way to wake up and be requested to meet with a neurologist with a curious name. After having shuffled the children off to their respective locations I made my way via good friend to the appointment. The room initially made me nervous as it had what looked like medieval torture devices there. He ran a number of tests that involved me flopping my hands a bit, walking to and from, smiling really big, etc… then answering some questions. Once we made it beyond that nonsense the doctor had me sit then told me the news. I, a twenty seven year old, former United States Marine, now had a disabling disease that they raise money for in walks on TV. I laughed, and not the giggle girly laugh, I did the deep full on belly laugh that insinuates the person I am laughing at must have recently lost their marbles kind of laugh. After telling him I thought that to be a very unprofessional joke, what do I “REALLY” have… he repeated the same. This time I wasn’t laughing. This time I stiffened up and like the Marine in me was bound to do simply asked as a solitary tear feel from my cheek, “How do we treat it?”
After peeling my face from the popcorn bowl I had prepared for myself to eat whilst watching the treatment option videos the doctor had sent with me, I had decided that Copaxone was going to be my first nightlight. We had already identified the monsters and their leader, now it was time to nuke em and I was actually excited to get started… until the part in the video where it talked about injecting the magic flashlight treatment. Then I wanted my teddy bear and blankey again because hiding under it was far more comfortable than injecting a needle into my body daily that was going to burn, cause a lump at the site, redness, tenderness, itching, and make me a little blah, but compared to the other medication treatments… this one posed the least amount of harm to me and the needle was smaller with a self injector thingy’ma’bob.
UPS trucks excite me because they bring magical goodness in syringe form and on this particular day, I had received my first box of goodies. Being a Medical Assistant and having gone through the training I was ready to administer my first injection that evening and now that it was in my hand, I was terrified. I set it up, swabbed the injection site clean, and froze for forty five minutes. I couldn’t bring myself to do it. I had my husband, who they brought back home from Iraq when I was hospitalized to treat the exacerbation, he did it for me that evening. I was disappointed with myself. I had this inner warrior like feeling when my package arrived, was so compelled to fight back against my own disease, then with the weapon in hand I basically screamed like a little girl and hid under my blankey from the monsters again. I did eventually master the art of the sub-cutaneous injection and it wasn’t so bad after all. It was, however, short lived. Copaxone wasn’t working and I was having exacerbation’s every other month that landed me in the hospital for at least three to four days on IV Methylprednisolone 1 Gm. daily, or 250 mg. IV/ q 6 hrs. x 4 d. I got used to reading that so much I would see the medications and dosages in my sleep. I could vividly remember the metallic taste one has in the mouth when the drip begins of Solumedrol, which is the other commonly known name for the anti-inflammatory that functions like a low-grade light switch to the immune system. This many exacerbation’s this close together was of great concern to my Neurologist and he pulled me off of Copaxone and placed me on Rebiff. Another sub-cutaneous injection only this one comes bearing gifts. Three times a week I had the pleasure of experiencing flu like symptoms, nausea, vomiting, seizures/convulsions due to fever, and tenderness at the injection site. The medication may have completely been a pain when taken, but it did its job and for a few years I had no exacerbation’s. We found the magic flashlight that kept the monsters at bay.
There is so much more to my story … my husband and I are no longer married, there was a tremendous amount of discord involved with that separation. There is the cancer a few years ago, and a tremendous amount more. I am considering publishing a book about my life with MS. So those details can be found there …
I will end this snippet with this … “I am currently a nursing student, raising five children as a single parent with a fiance who is understanding. I am racing against the clock now as they found two new lesions and both are in my spinal cord. I am now taking Avonex, it is once weekly injection so I can suffer the ill effects on the weekend and avoid interruption to my education.
I wasn’t born to quit and I simply love a challenge. There is so much life yet to be lived, so much to do… so many people I want to help, to make a difference in some small way for them to have a better quality of life. That is my goal. It is what keeps me going. To provide a blessed and joyful life for my family and help others to achieve the same.
May you all find your beacon of hope, that special light that illuminates your path and helps you to find your special reason to smile each day. I find I like people who have endured adversity in their lives more so than those that have not … because those that have appreciate and embrace peace and joy and understand what a true blessing they truly can be. It is my wish that you are able to slay the monsters under your beds and I will pray that you can do so.