“Fear is not in the habit of speaking truth.” ~ Tacitus
(A conversation I had with my husband on the drive home from a party in 2011)
Were you watching? Could you see me struggling?
When I said I was all right, that wasn’t true. I don’t know if I was fooling everyone or just fooling myself. It’s just these pins and needles have me feeling funny. You can see it in the way I move. The way I use the wall to stand. All night I couldn’t feel my feet and my right leg was totally numb.
I hate going to crowded parties. I know I look crazy. Stumbling around the room, pretending it’s normal. But what else could I do? Wall walking keeps me afloat so I don’t drown.
Wait, someone said I looked drunk?
I promise, I wasn’t. I know I was slurring my words but I haven’t had a cocktail in years. That wasn’t liquor they smelled. That was steroids on my breath. I take enough of those to make anyone drunk.
Faking has become second nature to me. I’ve conditioned myself to smile through the pain. Most times, I’m over in the corner hoping no one notices me. Hiding from reality. And when I come out, I return to lying about what I’m really feeling.
But if you look closely, you can see it in my eyes. That’s where the truth is. Where nothing can hide. My eyes show my reality. My face holds the details.
People constantly ask me, “How are you doing?” My voice always deceitfully trembles when I answer, “It’s going great”. I’ve said it so much that my mouth stays dry from swallowing so many lies.
But now, I can barely form the words to tell that untruth again. It hurts when I fake like everything is okay. Because everything is not always okay. MS is not fun. I can’t continuously put on a happy face just to make everyone comfortable. I did it for years. But I can’t do it anymore. Sorry to disappoint you. It has become too overwhelming to keep pretending. My mind doesn’t work like that.
I am not saying I’ll be the person at the party killing all the fun by making everyone sad. But, from now on, when I’m feeling bad and someone asks me, “How are you doing?” I’m going the tell the truth and say, “Not to good today, but I’m still trying.”
I hope to find the strength you have to find my honesty. I find it easier to pretend I’m asymptomatic rather then admit the truth (heat is my kryptonite.) I forget details like where I live, struggle with word-finding, and discuss matters for which I can’t recall later. I’d rather people think I’m crazy or stupid rather than admit I have a serious disease process. Thank you for giving me inspiration to be honest… I’ve never stated my truths out loud before despite being diagnosed in 2009. here’s my start.
hi, I just read your Blog, and when people ask how I am doing I just reply “STILL STANDING”.
whether I am leaning on my cane or standing against the wall we continue on!!
We do the best we can with what we have.
Thank you-I feel the same and if asked tell as close to the truth as I can about how I feel. Was just diagnosed this year but sure I have had it for a while. Struggling with the new normal and having to pace and adjust.Frustrating but could be worse
Nicole, I am still having nightmares over the medications you take. You describe perfectly what living with MS is like. I figured out people really don’t want to know (or feel comfortable knowing) how I am doing. You answer so perfectly to ask them back how they are doing. Focusing on what is pleasant or beautiful also helps me get through the day.
Nicole, I don’t often post but I ALWAYS read every word you write. Peace to you, my friend, and Merry Christmas.
Thank you for your post, Miss Nicole. I appreciate your honesty and salute your warrior gurl soul. Crowds over stimulate my brain and often send me into major mental and physical fatigue. Too much exterior movement makes my head tremor crank up and makes me dizzy. The last 5 years I can only do small gatherings otherwise all of the above occurs. I also have learned that I can always attend a get together for a short period of time and if I feel real crappy I can always say no. Such a delicate balance of not isolating, being mindful of me energy levels and the amount of days I may need to recover. Try if we can and if we can’t we cannot punish ourselves either. Many blessings to you
This is so true Nicole, I am so glad you obliged us with another well written piece. You just put many of my experiences into words. It’s so difficult because most of them really don’t understand or truly care. I get weary from explaining this illness at times. Thanks for the share. What a trooper you are!
Hi Nicole, I haven’t commented lately but this stopped me in my tracks. My PPMS manifests itself cognitively. I forget what the topic of conversation is in the moment. I fear one on one conversations with people I don’t know well. It can be embarrassing.
My husband now attends work parties alone. I feel terrible about this and I hate being left out. I can’t face strangers, the stress is overwhelming.
I feel the need to tell the truth, and stop pretending. But having spent a lifetime – well 50 years – being a polite Brit, and saying “I’m good thanks – and you?”… it’s hard to bite my tongue and tell the truth. But after ten years of having MS, it is easier. Thanks for the encouraging post.
You are such inspiration….You keep me lifted..
Nicole, your words are so true for me as well. We have my husbands Christmas party this upcoming weekend. I will be in my wheel chair. Everyone will be coming up to me bending down to my level (I feel like a three year old) to give hugs and conversation. I appreciate their kindness. I have known most of them for many years, however, just the same, I feel like a circus side show. I also like to hide out in the back corner as well. I try to stay positive and put on a brave face to get through the evening and just wing it !!!! Love the pic you posted. Your smile is infectious. Happy Holidays
Nicole,
I love reading your blog because you write about these kinds of topics so honestly. I think that trying is all you can do. As a daughter of a woman with secondary progressive MS, I can tell you that the people who love you do see how hard you try. Every now and then my mom tells me how horrible she feels that she can’t do more with me, but truthfully, it doesn’t bother me that she is limited in her capabilities. I’d be much more upset if I knew she wasn’t trying. You’re trying, and that’s the best you can do. And if some days you don’t want to try as hard, that’s okay, too. Your husband will still love you!
Well said. I totally agree with everything you said doll.
Keep on keeping on
LORI
I have two “how are you doing” answers. On a good day (what passes for good). i say “Some days good, some days bad, y’know, just like life.” On many days, I start with “How much time do you have?”
But even during the worst days with The Disease, there’s still beauty. A flower. The ever-changing colors of the sun on the leaves. The difference in colors between the sunset when you look towards it and when you see what it is shining ON. Which direction the wind is blowing, and the ever-changing scent in the air… Including the surprise addition of the smells from the local burger place (which makes really good burgers, by the way).
This is our task as MSers, and as humans… to have and fully experience truly sucky moments, and yet, to see beauty and smile.
Nicole,
I can’t seem to enjoy the crowded parties for the same reasons . There is always someone there that thinks they can fix it right then and there. Merry Christmas to a brilliant writer .
Keep on keeping on. You make it look effortless!❤️
Your the best girlfriend. Once again you nailed it.
Nice job putting your reality to words, all I can say is ditto. Your reality is mine too. Thanks