Control Freak

It has taken me a decade to admit that yes, I am a control freak. From wanting the bed made every morning, to checking in three times to see if my husband followed my to-do list when dropping off the baby at daycare: I have accepted the truth that I am not as laid back as I pretend to be. I realize it can be a funny or endearing term, but I also know from experience there is a deep-seeded anxiety that lives in all of us control freaks.

“If I don’t have the control then I am in danger.”

I don’t know when or how it began for me. My creative mind can concoct all kinds of catastrophic events from the time I open my eyes to the time I lay my head down on the pillow. I am always blown away when I ask my husband what he’s thinking when quietly sitting there, and he says, simply and honestly “I wasn’t.” No fatal car accidents? No chicken pox before we get the vaccine? No spontaneous job loss?

When I became pregnant, my husband and I were both sure my control freak tendencies would go into overdrive. Surprisingly, the opposite happened. For the majority of my pregnancy and after Naya’s birth, I rode a pink, fluffy dopamine magic carpet. I didn’t think about SIDS. I didn’t care if the dog barked and woke her up. My baby weight didn’t faze me. I had forgotten about being a control freak.

And then, after suddenly going blind in one eye, I was diagnosed with multiple sclerosis. At 29. Healthy. Doing everything (well…mostly everything) right.

Anyone who has MS, or loves someone who has MS, knows it’s about as unpredictable as it gets. Almost every question I asked my doctor was met with:

“We don’t really know.”

“It really is different for everybody.”

“It’s hard to say.”

For a control freak, they may as well have just hung banners in the exam room that read, “Hey, this is your worst nightmare.

And so began a surprisingly predictable dance through Kubler-Ross’s stages of grief:

Denial: “Don’t think for one second I’m changing my diet, getting on medications, or running some marathon. This will NOT define me.”

Bargaining: “Alright, God…. I’ll make you a deal. You give me MS and we’ll call it a fair trade for my kid’s lifetime guarantee of protection.”

Anger: …. {This one doesn’t need a caption. You can imagine it.}

Depression: Why me? This isn’t fair for Naya. What kind of mom am I going to be?”

Acceptance: Acceptance and I have a funny relationship. Acceptance is like that pair of skinny jeans that only fits half of the month, but man do I rock them when they fit. And when they don’t fit…. Well, I guess I just recycle through the stages again. It took me almost a year after being diagnosed to fully grasp what acceptance meant for me.

Let’s be honest. Even after all the self-exploration and grief work, I’m still a control freak to the bone. I make to-do lists and set reminders. I still ask one hundred questions. But here is something I learned by being handed this new journey of MS:

Acceptance: None of us are in control.

The week I was diagnosed, feeling angry and victimized that I couldn’t predict my future, a dear friend of mine took a playful and adventurous dive off a cliff into the Boundary Waters never to come back up for air.

Acceptance: This world, our health, the form our bodies will take years from now, is not guaranteed.

Through accepting this painfully terrifying truth I have started to heal and live better. I have allowed my grief to be witnessed, I have changed my diet substantially (goodbye, cheese….hello, kale), I have become more compliant and accepting of my daily injections, and I have run a marathon (…well, I walked an organized MS 2k, but who really counts the miles?). And, finally, I have come to understand that my lack of control over the future is just as it should be.

Acceptance: “The uncertainty of life is the most generous source of opportunity.” (a quote from the PaleoChef, Mary Shenouda, that I read to myself when I need reminding) 

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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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    25 Comments

  • Kristan   Nov 5, 2014 2:33 PM
    It's been 5 years since I was finally diagnosed and 8 since my first episode. I still have not accepted it. I am currently in the "not taking my meds because I don't want this stupid disease" state. It's not working so well for me. Lol . I'm a 37 year old control freak.
  • Faith Davis   Nov 5, 2014 2:34 PM
    Love your story, I was diagnosed in 2005 when I was taking on the world! It humbled me and taught me to slow down. Life is not a race, now I consider my MS a blessing because it has me living the way I always should have, slow, steady and happy:) God Bless, Faith
  • Gina Padilla   Nov 5, 2014 2:36 PM
    thanks for sharing
  • Stacy   Nov 5, 2014 2:45 PM
    My daughter, mother of a now 10.5 month old is permanently blind in her left eye at the young age of 23. I have been through an original roller coaster. Her onset started about 4 months after delivery of her son. I just pray everyday for a cure and slow progression. Godspeed to all of you!
  • Tonya   Nov 5, 2014 3:06 PM
    Thank you so much for your story. I was diagnosed with MS July 4th of this year. It is something I have had symptoms of since high school but was far from diagnosed. I am the type of person who walks straight and narrow. Divorced with 2 kids but worked hard for everything. Had a bad episode in June and was finally diagnosed. It was initially a relief To know, but then started doing research. Then I got scared... Now I want something to blame and want to know "why me" but there is no answer. Hopefully we can find a cure for this very painful disease!
  • Chrissy   Nov 5, 2014 3:52 PM
    Love this! I too am a control freak with MS.
  • msandreaw  Nov 5, 2014 4:04 PM
    Totally understand you, acceptance has taken me 10 years after diagnosis, I have been angry and in pain and my heart has been hardened.I am a control freak and do not like this moody, bitchy person I am today! I am trying to stay positive but it's hard when you hurt all the time! I am not giving up yet, I am going to Mayo clinic hoping for resolution so I don't have to live the rest of my life like this! Good luck to you in your MS journey!
  • Stephanie Devaney   Nov 5, 2014 4:44 PM
    Thank you so much for your article! I think you hit the nail on the head perfectly! Especially the acceptance parts! Feels like some days two steps forward and in step back on the KR grief stages... But I feel like that is progress.
  • rndee95  Nov 5, 2014 5:02 PM
    Thanks for sharing your thoughts. New diagnosis Sept 5, 2014. Unable to work as an RN. I never know what I'm going to get each morning as far as symptoms go. I hope to talk with a therapist soon so I can grieve a little. Been so busy with paper work, interviews, appointments and getting thru the day with a mind and body that doesn't seem like my own any more, I can't fit grieving in :(
  • sandra bage   Nov 5, 2014 6:06 PM
    I've been diagnosed when my baby was 8 months, unpredictable. It is for me a prisoner in my own body,walking is not easy for me, stairs are a no no holding my.baby he just feels to much for me to hold, I try but to unsteady lucky he is walking now, falls are always happening for me it's not good, I've excepted it been through the why me still get depressed,wish I could walk really but 10 month into my diagnosis I'm ok,happy to have my baby happy to have a lovely husband I'm happy.
  • kritika.jeffrine   Nov 5, 2014 7:02 PM
    Hi
    This is kritika I'm from India I have been fighting science last four years. I just wanted to know tht can I opt for marriage and does this thing affect my child
  • Paula Preston   Nov 5, 2014 8:14 PM
    When my daughter Brittiany was diagnosed with MS four years ago, I felt a fist pummel into my stomach. I can't imagine how she felt. She has been a rock, raising her three boys. She told me that she left it in God's hands and was not taking it back. The injections did not work for her. There was a new pill coming out and she was on the trial. She has dine wonderful.
  • nancy   Nov 6, 2014 6:18 AM
    I call it being a perfectionist...I had to give in and I try to cope with "its not important" mantra but to me it is so frustrating.
  • km  Nov 6, 2014 12:21 PM
    Perfect timing. I needed this today. Finally gave into meds this week, but still had my rebellious cheese omelette for breakfast! Gave myself permission to do absolutely nothing today, in spite of the mounting laundry and insurance follow up calls. However, the desire to make good use of my time has me making lists of what Saturday afternoon will consist of. - thank you for reminding me that I am not alone on this journey.
  • Avatar
    Phil See  Nov 6, 2014 1:02 PM
    You are on the right track saying goodbye to cheese. Diagnosed in 2002, I said goodbye to beef and pork and in, 2012 cut my animal protein down to 5% or less per serving and said goodbye to most dairy products. At that same time, I made my diet a mostly whole foods/plant based diet. I still have cheese (parmasan) on my pasta and land o lakes butter made with canola oil lightly spread over freshly baked French bread, dusted with garlic powder and toasted in the oven to go with that pasta, when ever we have it. What little meat I do have is occasional fish and even more rare, poultry. Since changing my diet in 2012, I haven't had a single MS exacerbation. My diet is the only "medication" I have ever taken for MS and it has done amazing things for me. I can still work and play all my musical instruments I did before my diagnosis. Whether it is MS or some other disease, processed foods with chemical additives/preservatives are a catalyst for diseases waking up in our bodies so, again, you are definitely on the right track. Keep fighting the good fight :-)
  • mira   Nov 7, 2014 4:06 PM
    i have MS from 2008, i was control freak till 2 years ago when my husbant tell me can't live with an ill person. now, i'm only me with my dog, and our life is better, i'm better and i'm thankful for each day, it's not easy, but it is how it is.
    all of you, be strong!!!
  • Kelly Nickl   Nov 7, 2014 4:23 PM
    I think my lack of control of my MS has turned me into more of a control freak than I ever was before.
    Suddenly, I go crazy when the big forks and small forks are not separated properly, or that the towels aren't folded just right, or when the stainless steel pans are mixed in with the copper bottom pans. I drive my family nuts with all my rules & regulations. They try so hard to help with things around the house & all I do is get angry if things are not, 'just so'.
    Two years ago, I could've cared less how the pans were stacked, as long as the cupboard door would stay shut.
    I should be grateful for their help, but it only makes me feel more inadequate and less capable of performing my 'womanly' household duties.
    I find myself angry almost all the time. I'm constantly rolling my eyes at things being out of place or when it's not done as quickly as it should be.
    Why can't I let it go? Accept the help and be grateful?
    Because it's simply admitting to myself that I am no longer the person I once was....nor will I ever be.
  • Brigidlikeshedgehogs  Nov 12, 2014 9:15 AM
    Thanks for the humor, I guess because it's true for me too. I was active duty Air Force when diagnosed, so you can imagine how well I took it (denial was my diet). I alpre iate your story. Thank you for sharing it.
  • Marie   Nov 13, 2014 8:07 AM
    Thank you for putting into words what we've all thought. Now I know I'm not the only one God. I know He's listening.
  • Lisa Adey   Nov 14, 2014 2:49 PM
    Thanks for the blog! It is so me!! I was diagnosed with MS in June 2013. It has been a roller-coaster ride to say the least. I was immediately started on Rebif and had no side effects but was just not responding to the medicine. I was then started on Tysabri in April 2014. Also no side effects. What I get the most frustrated with is with all the medications I am on; why am I only getting worse? I am now diagnosed with Progressive MS. So I have tried to learn to "let it all go" but it is still hard to get to that point when you were so in control of everything before. The best things that I have found is #1. Give it all to God...if He brought you to it, He WILL bring you through it. And #2. Have a great supporter/comforter (my husband...who is amazing and says that we will get through this together...he is my rock). Thanks for sharing! Lisa
  • Darlene   Nov 20, 2014 3:03 PM
    I am 77 years old and in good health, except for MS. I miss walking and quilting and doing fun things with my grand kids. My husband of 50 years is my only caregiver...I can do almost nothing without him. I was diagnosed when I was 50 and the first 10 years were not bad, now I spend my days in my recliner. MS is Miserable Stuff !
  • Avatar
    silverfeather31  Oct 23, 2015 10:58 AM
    Thank you for this. I am on my way to being diagnosed and the stages you list are me right now. Bargaining hit last night. Acceptance is very much like skinny jeans. You nailed it! Thank you so much! It helps me to read this as I move forward in the process. To learn I am not alone.
  • Nicole   Dec 10, 2015 5:33 PM
    I am 42 and my mother had MS and passed away in 2008, she fought a good fight for 28 years .. I recently was diagnosed with mono but I started having some kind of flare up above and beyond mono .. I have had blurry vision , balance issues , memory issues .. Pain and numbness .. I have had lymes ruled out and because of my mothers history we think this might be going on .. I see neuro Monday .. I know in my heart that's what it is .. The symptoms have been awful
  • Terry Fritts   Mar 11, 2016 9:40 AM
    Thank you for writing this article, Danah. I have been a perfectionist all my life, just ask Barbara! Some people would say to me, "That's a good thing." It's not. Being a perfectionist is a curse, as you know. I was constantly organizing our home and could never relax until I thought everything looked perfect and the clothes were folded perfectly, etc. With MS depleting so much of my energy, each year that became more and more difficult. Although I was not diagnosed until the age of 57 , my neurologist told me that I probably had this disease brewing for at least 25 years before I had my first event.
  • Pam L   Jun 12, 2016 12:43 PM
    Have you ever met or heard of anyone over 50 being diagnosed with MS?