Unaware of All the Invisible Things

I spent my twenties angry that my thighs were not thinner and my abs were not flatter. Sometimes I try to calculate how many hours of untapped imagination was wasted in that decade. Time I could have spent exploring my world instead of agonizing over my perfectly healthy body. On my nuttiest days I try to measure out my bad deeds on a "karma scale" to see if the total equals MS in your thirties. 

How far away or close are we to our brains — our miraculous life force floating pristine in fluid right behind or eyes?

How much of us is our brain?

I think about these questions all the time. When I have to lie in a coffin for an hour just to get a picture of my brain, I feel miles away from it. When it silently degenerates inside my skull while I'm cooking dinner and playing pat-a-cake, I feel like my brain is a long lost friend with whom I've become estranged.
 
I always find it strangely poetic that after years of silently attacking myself for all the things I felt were flawed, I got diagnosed with a disease that — by nature — is my body mistakenly and mercilessly attacking its keeper: my brain. If only I could have known I would meet my match, how much sooner would I have laid down my sword?
 
"You got your results in the mail while we were gone," he says with a pause. And I know, by the length of that pause, that he opened the mail. Strangely, I'm relieved. Relieved that he is sharing in this vulnerable burden…your life boiled down to one envelope that came after Christmas. He reads the words to me. Posterior, superior, periventricular, temporal, demyelination, plaque. Right turn, left turn, and right.... driving to pick up the kids.
 
My kids. Little beings who can't even grasp, "mommy had a bad day" let alone, "mommy is worried she won't always be the mommy you need,” or "mommy is angry that she has a disease she can't control." There they are. My daughter, wisps of hair whipping her face while she elaborately tells me about her friends in school. My son, a chubby baby planting sloppy, wet kisses on my face. So present and so unaware of all the invisible things.
 
I buckle them in and we drive. Right turn, left turn, and right. Somewhere in my haze I hear, "Mommy? Can you play my Trolls Song?" Mindlessly I hit play, grateful for an excuse to tune out the world. This dumb song that I've listened to on repeat for months begins to play.
 
Then it happens. I realize, that for the first time, my daughter has decided to try to sing along. And she knows all the words. One or two steps behind the beat, completely out of tune, but clear as day, she begins to speak to me.

The music is gone

and all I hear is her tiny, confident voice:
 
"I'm off on this remarkable adventure.
What if it's all a big mistake? What if it's more than I can take?
No! I can't think that way, ‘cause I know that I'm really
really
really
gonna be okay." 
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Danah

Danah Brown

Danah Brown was diagnosed with MS in August 2013, three months after giving birth to her baby girl. Danah is a psychologist and lives in Iowa with her husband, daughter, and dog, Ernie.  

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    22 Comments

  • Spencer   Feb 22, 2017 10:37 AM
    You bring a poetic view to the disease, which can be as unpredictable as free verse. Great post! I'm not sure if you've seen it, but I try to keep up my MS blog at http://metaspencer.blogspot.com ... It's great to see another blogger at it!
  • Cecilia   Feb 22, 2017 10:46 AM
    Thanks for your wonderful piece!
  • ywhoknos   Feb 22, 2017 4:42 PM
    Wonderful story.
  • newzea4me  Feb 22, 2017 5:17 PM
    I find myself re-reading this over and over. It really spoke to me, pulled; rather, ripped at my heartstrings. I was diagnosed in 2012. I was nearing the end of my 30's, now into my 40's. I have an over-abundance of journal entries similar to your post. As with anyone, MS or not, there are peaks and valleys in our lives, right? Thank you for sharing yours. And adding to mine.
  • SmartyPants   Feb 22, 2017 10:13 PM
    Your story touched me deeply, I too remember walking out of my neurologist's office, down a long hall thinking I knew something was wrong, but the final revelation hits you smack dab in your middle. I spent my twenties at a thin I could eat everything size and went through life as a beautiful woman, who could get herself hired, or any man that I wanted. Well when I was 53 at the height of my career, caring for disabled people, I ironically got MS and was forced to retire. i wasn't a happy person for the first year, took to counseling to stop the anger about why God would take away my life work. I used all my expertise and got all the wheelchairs, walkers, grab bars and ramps and set down to wait for the shoe to drop. Well, all the workstress had made me get steadily worse, progressive kind, my neurologist wrote a letter,about how he thought i would be wheelchair bound shortly. Well when I finally quit the job, it took a year struggling with fatigue, the heat making me get vertigo and the feeling tired all the time. Well i would have kept working although my counselor was asking "When are you going to let Diane quit that job" the 16 hour days was literally killing me. Well it took a finally fall, where my back was so bad I was bedbound for 6 months. My loving mate, he took care of me, after he came home from work, he cooked and brought up a tray, he stood behind me in the shower holding me up so i could shower. It made us unbelievably close, closer. Well, quess what I am 60 and I haven't gotten worse, that's right after taking stress out of my life, My MS stabilized. I walk with canes, walker and sometimes use the wheelchair, for the air cusion I sit on, keeps my back from getting so bad i have to lie down. I got on a good pain me, which gave me my life back. But the skinny woman, well, I got fat, oh yes, as I wasn't as active as before. So i was the opposite of you < I was skinny and now had to adjust to being fat. I know how you feel, the self estemm lowers, I wear clothes to hide the heaviness. But I got busy and started a twice a day work out. every morning, first thing I jump on my incumbent riding bike and ride 45 min or 8.2 miles, then up on the bed for weights, crunches and another 20 min. Then i swim every tue and thrursday, swimming a straight hour, laps non stop. I am in the best physical shape I have ever been, I lost 16 lbs but need to lose 30 more but I am healthy. My bad vice is sugar.
    So don't feel bad, you are who you are, MS will not define you after awhile. No really when I first got MS i thought i was going to die. But it has been bearable. But wait for it, here comes the good part, I was cleaning out my closets and found my old journals from when I first moved to Oregon and was working as a forester living in my tent doing timber inventory with six other people. Well as I sat chuckling, as the mostly men crew teased me relentlessly, i thought this would make a good book. And so I wrote three books, 'The Eve Chronicles" by Diane DeVillers, look it up on Amazon. Without getting MS I never would have had the time to write them. Without MS I never would have known how much my darling beloved loves me. He took up the slack, works longer hours and we kept the house which we both love, on Moon Mt. what a great name.
    So darling, just put MS at the back of your mind, don't jinx yourself, and breathe, breathe, and be, be you. You are a child of the universe, perfect just the way you are. I never had any children so I envy you, that you have them in your life, they are your reason for accepting this. A friend you never met you, SmartyPants
  • tslaghuis  Feb 23, 2017 2:48 AM
    Oh my goodness, your wonderful words have moved me to tears. Thank you for sharing.
  • Leanne   Feb 24, 2017 10:15 AM
    Diagnosed 3 months after my 2nd child, had to have a nanny for 6 months. Toughest time of my life, although coping with my MS is soul/life destroying.
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    cjtmn  Feb 24, 2017 11:47 AM
    So beautiful. I had my first attack (albeit unknown) after the birth of my second child. My Dx didn't happen for 7.5 years after that. I had no idea what was happening, and as you stated, was so concerned about being perfect physically, a perfect business woman, a perfect wife and a perfect mom. I put these unrealistic expectations on myself and then berated myself for not meeting or exceeding them.

    It all changed in the fall of 2015. Perspective is a beautiful thing and I'm doing everything in my power to be present in my life here and now. Your blog really touched me. Thank you for so eloquently writing what my heart has felt, too.
  • paolo rieza   Feb 24, 2017 1:05 PM
    Your post and the comments made my day. I'm from the Philippines, was diagnosed with a Relapsing-Remitting Multiple Sclerosis in 2005, I was 15. MS changed my life and I think, the lives of the people I love and love me. It was a nightmare lying in a hospital bed waiting for my MRI scan. I was so terrified I thought I was going to be cremated.

    I woke up the next day in the ICU. My parents said I had not my spine had not been scanned, I had more than 10 seizure episodes inside the MRI machine. Eventually, I was scanned after asking mom to hold my toe while inside the MRI machine.

    The world fell down on me when the neurologist told us it's MS and explained what could happen next. I have big dreams, I was about to enter my dream university before I temporarily lost my sight, ability to walk, and had problems urinating.

    Life goes on, MS made me appreciate and realize how loved I am by my parents, siblings, friends and people I did not expect to be concerned on me.

    I'm now on my tenth year in the university as an undergraduate student. It was hard specially when people would not seem to understand my condition or could not be convinced what I had been asking was due consideration not special consideration.

    I, we can't give up. I have faith on the people who love and continue to care for me, MS is part of my life and my will is stronger than MS. MS may rob me some of my bilities but it cannot stop me from doing something good. It may occasionaly take something from so we must make the most out of it whenever we gain it back, in whole or in parts.

    We can be more resilient and strong than how we think we are. We have endured excrutiating pain even if there's no physical proof of its cause. Pain you'd pray your loved ones or anyone to experience. We know how to be tired even during a very relaxed day or feel exhausted after a good night's sleep. Unlike you, I have not gained significant weight after I was diagnosed.

    I am very grateful to those like you who continue to inspire us and can still see an open and lighted path beyond the barrier MS has built in front of us. I will continue to pursue my dreams to someday be able to serve, support and give assistance to the poor, the elderly, people with illnesses, disabilities, the disempowered, the vulnersbles and help them actualize their full potentials however limited it can be.

    We can fight MS and turn it into a friend who will push us towards the achievement of our goals. Love life, keep going. It's our simplest way of paying back God and those who struggle with us. It's a struggle, at the same time a wondeful and exciting journey. God bless to all #MSWarriors, our families, friends, doctors, therapists, caregivers and to anyone who care.
  • paolo rieza   Feb 24, 2017 1:40 PM
    Sorry I had problems, editing and submitting my comment. I apologize for the error. Internet service not that good here. The 7th paragraph should be:

    We can be more resilient and strongER than how we think we are. We have endured, OR CONTINUE TO ENDURE excrutianing pain even if there's no physical proof of its cause. Pain you WOULD NEVER PRAY your loved ones or anyone you know to experience. We know how to be tired during a very relaxed day or be exhausted even after a good night's sleep. LIE AWAKE IN BED FOR HOURS IN THE NIGHT OR WAKE UP LATE WITHOUT THE WILL OR STRENGTH TO RISE UP. Unlike you, I had not gained significant weight after I'VE BEEN DIAGNOSED.
  • Ashley   Feb 24, 2017 4:41 PM
    This brought tears to my eyes! Beautifully written and a great reminder that it's never too late to explore the world!
  • Pat Lamias   Feb 24, 2017 11:48 PM
    Thanks for sharing! You have a beautiful baby girl! I went alot of years knowing
    something was wrong, but not really getting any answers. I still remember having years of feeling "OFF" that is how I felt.. Had all the testing for diabetes, etc. We were in temporary quarters at an Air Force Base and my youngest of three was 4years old. I woke up one morning blind in my left eye. That was the start of my journey. It was in 1982 and no MRI's. Saw a base Opthomologist and all he could tell me was I did not have a brain tumor or a stroke!! Wow, I was not thinking that!! Long story short, glad Danah you have been diagnosed early. Hopefully they can keep you from progressing!! I want to tell people out there, if you know something is not right with your body, keep pushing for answers!!! I was not diagnosed until years later!!! I have been very blessed to still be walking even though I use a cane now. God Bless, Patti
  • Bridget   Feb 25, 2017 3:58 PM
    Is there a connection between giving birth and MS, like the body is weakened? Thank you.
  • JuNae Jones   Feb 25, 2017 4:45 PM
    I have had multiple sclerosis for 20 years and am feeling optimistic about my future I am a very optimistic about life in all aspects thank you for letting us know this about yourself.
  • shynooze  Feb 26, 2017 12:34 PM
    Am just diagnosed. Am terrifief
  • Jonathan Strum   Feb 27, 2017 7:07 PM
    I'm glad you spent your twenties thinking about the things that women in their twenties think about.

    And please be kind to yourself and toss that karma scale. Nobody deserves MS. Not for any reason.
  • Terence   Feb 28, 2017 11:26 AM
    Thank you for this post. It really struck a cord. I do not have MS, but I have the perspective of your children that I think you are curious about. My mother was diagnosed with MS in 1986 when I was two years old. She had been experiencing symptoms since the late 70s, but never got answers until her diagnosis. I had an older brother at the time, two years older than me, and my mom went on to have two more boys after me. Her children were...are...everything to her. I could not appreciate it at the time because I was so young, but I have found old letters that she wrote to friends and family discussing her fears of MS and missing out on watching her boys grow up. She had episodes where she lost her eyesight and wrote that she would rather lose her ability to walk and talk than lose her ability to see her boys grow up. It was prophetic. Today she has lost her ability to walk and communicate, but she can still see. She got to see all of her boys graduate college and graduate school and become men, her two oldest boys get married, and meet her four grandchildren, including my daughter who carries her name. Don't get me wrong. MS has challenged my family every single day since she was diagnosed. It's not easy and I still struggle with the void in my life caused by my mother's inability to have the same level of involvement as a health mom would. Like you, my wife is a psychologist and constantly wrestles to better understand the deep affect this disease had on my whole family. However, know that my brothers and I all turned out okay, even with the challenges my mom faced raising us. Know that there was far less research and information known about MS when my mom was diagnosed versus what we know today. My mom had already suffered the bulk of her attacks before the breakthrough treatments available today were discovered. You are already many miles ahead of where she was when I was your daughter's age. This is why I continue to support the MS Society every year - so that what happened to my mom can be prevented for those who follow. Cherish your time with your daughter. Tell her you love her, hug her every night and feel confident letter her know you will always be there for her.
  • pam   Feb 28, 2017 8:24 PM
    What a writer you are! Beautifully written... I seemed to have taken my diagnosis in stride at the time over 24 years ago. I do recall my neurologist saying to me as I was walking out the door an afterthought..He shouted, "Don"t call me if you have any patches of numbness!" I didn't even know what that meant!? What were patches of numbness? All I knew was I better not bother him about it... What a wonderful introduction to MS and to my first of many neurologists. I'm not one to call a doctor to bother him. Most of them would have me walk about 6 steps and they would say, "yeah, you are getting worse." I try not to see any Dr. if I don't have to even my primary care Dr, Hope you are doing well. Thank you for sharing.
  • Greg   Mar 11, 2017 6:48 PM
    This disorder, known as MS, has a weird way of opening my eyes to what is really important in this life. You seemed to have arrived there before me.....great story/poem.

    Greg D.
    Diagnosed August of 2016
  • pam   Mar 30, 2017 1:33 PM
    Danah, What a REAL story about you living with MS; your feelings, anger, frustrations, yet you do what you have to do...what you need to do. Great job
    just keepin on keeping on! Only we understand. I've had MS for 24yrs. I really enjoy MS World. You should check it out. Ive sent stories, poems, and paintings. Look under creative section. You will enjoy reading more and we will all enjoy reading more from you! Thank you, Pam T.
  • pam   Mar 30, 2017 1:54 PM
    Danah, I just noticed I left a comment almost exactly ONE MONTH AGO! It was so different that this one. Like I said I've had MS for 24 yrs but also I am 68...is it my MS or age affecting my memory? Oh Well... You all understand. ha...but I'm not laughing. Pam T.
  • Laura   Apr 9, 2017 8:40 PM
    I was diagnosed in October 2013 a year after giving birth to my daughter. Did you know that birth control gives you a 70% less chance of getting MS after birth. Our hormones are a big factor in MS and so many women get this awful disease after having a baby. This article made me laugh because I was slightly vain before my diagnoses. I was using latisse that stuff that makes your eye lashes grow thick and long. I had my first MS attack and I spent 3 weeks in the hospital temporarily paralyzed on my left side. When I finally drug myself into the bathroom in the hospital and looked at myself in the mirror I saw that the latisse had finally kicked in and my eye lashes were gorgeous and here I am half paralyzed lol it really made me laugh and realize what is important in life. Laura orlando, FL