Multiple Sclerosis, Multiple Emotions

I was diagnosed with multiple sclerosis nine months ago. I’ve been struggling with how to write about it ever since. I wanted to find something funny, or at the very least, insightful, to say about the experience. But so far I haven’t found anything remotely funny about it and my insights are banal at best, self-indulgent at worst. Mostly what I can think to say is that I hate that have MS. (See, I told you.)

But I feel compelled to try to write something, because writing is how I make sense of the world. And if ever there was something I needed to make sense of, this is it. So here goes…

My journey to MS has been a long and complicated one. For almost nine years, I had troubling neurological symptoms and abnormal brain MRIs. I had some, but not enough, evidence of the disease. Then last fall, I developed new symptoms that my doc thought might be coming from damage in my spinal cord. Turns out, he was right.

In MS, the body attacks itself by eating away at the protective covering around nerves in your brain and spinal cord. It interrupts the way messages are sent and received throughout your central nervous system. Because your central nervous system controls most of the functions of the body and mind, this means MS can affect nearly anything and everything you do. It can affect your ability to see, speak, go to the bathroom, think clearly, and/or properly use your hands, arms, feet and legs. In one person, MS can mean a bit of tingling. In another, it can cause severe paralysis. And no one can predict the course your disease will take. It’s a crapshoot with your quality of life on the line.

The day I went to get my doctor’s suspicions checked out, I walked out of the hospital and his nurse called before I even started my car. “We need you to come in to talk about your MRI.” You know you are not getting good news when you get a call like that. My doctor walked into the room. He told me I had MS while he was still standing up. He said now that it was in my spinal cord in addition to my brain, it was time to start treatment. I asked if I had to. I was scared. He said that the spinal cord is “valuable real estate,” and while none of the medications could stop the damage from occurring, they could potentially slow it down by 30%. Those weren’t the best odds I’d ever heard of, but I put my money on the drugs anyway.

So that is where I am now. I don’t know if the medication is working. I won’t ever really know because how do you measure a drug that is 30% effective at preventing something that may or may not happen? I do know that it has made half of my hair fall out, which I’ll admit with shame has been harder on me than I thought it would be. (To all the women who have gone through chemotherapy: Every single one of you is a stone-cold badass.)

I take my pills everyday and very occasionally try to sort through my feelings about the whole thing. Some moments I feel like this is no big deal and I’m stupid if I feel stressed about it. Other times, I feel a resigned sort of sadness. Most of time, however, I am just not sure how to feel about it. Feeling sad seems defeatest, while feeling upbeat about it seems naive. The quote I keep coming back to about living with MS is from American writer, Joan Didion. In her memoir, The White Album, she writes about her experience of being diagnosed in the 1960s. “I had, at the time, a sharp apprehension not of what it was like to be old, but of what it was like to open the door to the stranger and find that the stranger did indeed have the knife.”

Leave it to Joan to get it exactly right.

Practically speaking, I am doing fine. I have been extremely lucky so far. The worst thing I have is neuropathic pain in my feet. This pain, while not intense, is constant. Like 24/7 for months now, constant. So my feet hurt whether I’m sitting still or running around. They hurt in the morning, the afternoon, the evening, and in middle of the night. They hurt all the fucking time. And it is quite possible they will feel like this everyday for the rest of forever. Sometimes I catch myself feeling frustrated or sorry for myself about this. When that happens, I almost immediately send this transmission out into the ether: I don’t mean to complain! If this is all that I have to deal with, I’ll take it! I make bargains with my MS. I’ll take the pain, if I can keep my eyesight. I will gladly accept the numbness, if I can walk without assistance. Give me tingling in my hands, but leave me control of my bladder.

So in many ways, for me, that is the worst part. At least right now. It’s the fear of the unknown. I think we all fear the unknown to a certain extent, but in this case it’s a little different because there is a clear and present danger. To take Ms. Didion’s metaphor a step further, it’s like being locked inside a building with the stranger who has the knife. You know he’s coming for you, you just don’t know when, or how much damage he’s going to do.

This bit of writing aside, I don’t sit around obsessing about my health and I try not to give into self-pity. I am, at this moment, a healthy, active woman with far more immediate fish to fry. Like the literal fish I have to make for dinner. Or the metaphorical fish of throwing away a bunch of my kids’ junk before they get home from camp. I work every single day at making sure MS doesn’t become more important than it needs to be. This involves a healthy reliance on denial. And champagne. And Pringles. But most heavily, I rely on my husband, without whom I would fold like a cheap suit. And my dear, dear friends and family, who have made this stupid disease almost worth having by being so unbelievably nice to me these past months.

So as promised, this essay was neither funny nor insightful. It actually turned out a bit more self-indulgent and gloomy than I had hoped. I’m sorry for that. But this is just my first try and it has only been nine months (and honestly it has been a pretty shitty nine months at that). Please know I am working on getting back to the annoyingly positive attitude I once had. And next time I write about this, it will be filled with exclamation points and smiley faces. Because who doesn’t love writing filled with those? For now, I just thank you for reading. I’m not sure I made sense of anything by writing this, but I do feel a bit lighter for having shared it. And that would not have been possible without you!!!


18 Comments on “Multiple Sclerosis, Multiple Emotions”

  1. Penny Messer says:

    I am so sorry Jill. You are such a wonderful person, and you have such a wonderful family. My prayers are with you. You are a strong woman, and I know that you will deal with this in the best way possible. Life is certainly not fair.

  2. gale spencer says:

    Jill – I love you! I always love reading your blog and today was no exception. (I am totally resisting the urge to start discussing holistic things like taking curcumin daily, or throwing out all chemical infused foods in your pantry!) There really are no good words to say, are there? I know you will deal with this like a champ, but I have to admit that I am actually thinking stuff like, “This situation could really work in the plot line of her next novel!” 😉 I am happy to call you a friend!!

    • Jill Orr says:

      Gale- how did I know you were going to suggest something homepathic?!?! 😉 Love it! And one of these days, I WILL put down the Pringles! Until then, we will just have to talk books and drink fruity drinks together. Thanks for always being in my corner. I think of you and Scott often. Hope you’re both well! xxoo

  3. Jen Montgomery says:

    I love you my dear friend!! I hate that you have to go through this. Thank you for sharing all of your feelings about MS. You said that writing this piece will help you, but your story, thoughts, and feelings will also help each person who reads this in some way. Thank you for being you! Love, Jen

    • Jill Orr says:

      Jenny-jen! I’m sorry I wasn’t able to read your message clearly… could you just come down to Como and tell me in person? 😉 (Just kidding. I miss you though and I wanted to trick you into a visit!) Thanks, as always for your kind words and encouragement. Love you, girl!

  4. To be present with life requires that we acknowledge the pain and sadness along with happiness and pleasures. How brave, authentic and helpful you are to all who have to deal with the jolt of serious health issues. I read a book called “How to be Sick” by a woman helpfully shared her journey with an odd disease that dibilitated her. The book was a gitt in dealing with my own issues. Thank you for being real.

  5. Molly Veltz says:

    The MS brochure, the one that explains the disease and the prognosis and the treatments, it needs to have this essay inside it. Quality stuff. Thanks for writing it. I have a chronic disease too, (rheumatoid arthritis) and it certainly does suck imagining all the possibilities that the future may hold. I feel for you and I admire you and I’m sure you’re going to live with this and not let it stop you. Because you seem unstoppable!

  6. Damommachef says:

    I have been reading your blog valiantly ever since your very first post. I know we aren’t friends, but as an internet friend please accept the sorrow I feel in your behalf. I wish you all the best. My niece was also just recently diagnosed; she is a young mom with three little ones. Sending virtual good karma and friendship your way.

    • Jill Orr says:

      I say we ARE friends, internet and otherwise! Thank you for reading my ramblings all this time, and for commenting. I always look forward to hearing what you have to say. I truly appreciate the nice words and the positive thoughts. Sorry about your niece. I hope she is doing well. xo, jill

  7. I’m so sorry you are going through this. I’ve seen it firsthand with a friend and I know the pain is very real. I hope the best for you and that you won’t feel this way forever. Thank you for sharing this part of you as I’m sure it was very hard to do.

  8. I don’t know if there’s truly any way to make a post like this funny rather than serious. It’s a scary disease, especially with all the uncertainty. All i can say is I wish you well and appreciate it that you are taking the rest of us along on your ride.

  9. Karen says:

    Brava for writing this important and touching perspective on your MS; and I mean brave of you as well as congratulations. I wish that everyone who knows someone with MS could read it.

    But I aldi write

  10. Karen says:

    Umm, I hit the wrong button & didn’t get to finish. 😳

    I wanted to add, take heart. I have a beloved sister who has dealt with MS for over 25 years, and despite her symptoms, which are sometimes overwhelming, she has led an active & productive life and is still rambunctious at age 70! We have also seen significant and improved treatment measures for her during that time which bodes well for you and others in the future.
    Sending you

  11. Mary Gold says:

    Dearest Jill, you set a great example of how to be brave! Hang in there.

  12. Arlene Kalaf says:

    Jill: I would never have guessed you had MS. I read your articles all the time in the magazine and love what you write. Keep up the writing, see you in the neighborhood

  13. June Holt says:

    Jill, I admire your strength, courage and honesty as you write about the situation your are now facing. My prayers are with you as you travel this path.

  14. rsbbmn72 says:

    Jill, not sure how I missed this post when you first published it…I wish this was a joke as I hate to learn that your suspicions you shared with me months ago came to be fact—yet another example of a great person having to deal with something unfair and undeserved! 😦 Bravo for your fearless attitude and perspective on things. I will be wishing nothing but the best for you and for you to have the “best case” scenario going forward. I know you have a wonderful family support system and many close friends to lean on –don’t be afraid to ask for help if you need it! I know that can be hard, but that is what friends and family are for. Keep up your “fighter” attitude and keep kicking MS in the a**!! I hope to see you all on my next trip to Columbia! XO – Becky Brown

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