Words to Live by: ‘I Am Fine’
“I am fine.” Three words I know as rote. I say them frequently and without hesitation. I utter them as much for others as I do for myself. My reality is too much for most. At times it is too much for me. This packaged response is almost expected. And that is OK.
Social norms are different for someone with chronic illness. I learned from a young age to hide behind packaged etiquette, conversing with a social grace far beyond my years. I felt the safety of idle chitchat. Little did I know this would become an art form.
What does it mean to be fine? It depends on the day, and at times, the hour. It means I am saving you from details that might make you uncomfortable. The persistent pain, sleepless nights, and exhausting dawns are my norms. Yet, they are impossible to understand. And I do not expect you to. I say I am fine because I have to be. I choose to be fine because I want to be. I pray to be fine — it sustains me.
I say I am fine because I am weary. I begin my fight from the moment I open my eyes. I harness precious energy and focus intently on tasks I once did without thought. I am holding onto “fine” in hopes it will someday be true. I can only control my reaction and thoughts. Hence, you can bet I will hold onto hope every chance I get. If my narrative is fine, then so too am I.
I am weary of being anything less than fine. To admit my truth would be to open a faucet that is so hard to shut. Almost immediately, the trickle of well-meaning platitudes begin. Clichés belong in hallmark cards. They can level someone with MS. I have been told I do not look sick. That they imagine everyone wishes to look as sick as I do. That tomorrow is a new day. That I should be grateful I am not worse. I understand these are said without malice. However, it is often easier to avoid hearing them altogether.
The faucet is just warming up. Given time, everyone is suddenly a neurologist, dietician, physical therapist, and psychiatrist. I am told how to heal myself then asked why I have not yet done so. This is incredibly defeating. I do not want to have MS. I listen to my doctor. I do what I am told. I eat the best I can and move as much as possible. I am told to beware of this medication or that because they know someone who died of MS. I would rather not hear of anyone dying due to MS. Shocker, I know.
Ultimately, I am somewhat private when it comes to my struggles. If my pain or insomnia is bad, or my disease is on the prowl, chances are you will not know.
And that is fine.
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Comments
Mike Albert
Wow, you wrote my story
Jennifer (Jenn) Powell
Hi Mike,
I’m grateful you could relate!
Stay well.
Kindly,
Jenn
Patrick
Thank you for sharing. It almost brought me to tears knowing someone else goes through this. Sometimes It comforting to know that you’re not alone.
Lorri Redmon
This really hits home so deeply. Thank you for painting my/our experience so adeptly.
Diva
Great article, by the way I’m fine too!
Cynthia
You told it perfectly .... Thank you
I have been told that I can't possibly have MS because "a friend of mine has it and she's in a wheelchair "
Others don't see me at home using my wheelchair when my legs just won't work.
I ,too ,am fine .... and that's what I tell anyone who asks
And I do know that I am much better off than others .
Stephanie Beck
Thank you Jennifer for this article. I was diagnosed at 18 and now I’m getting ready to turn 50. I can no longer hide behind my ‘I am fine’ scenario because when people see me in my wheelchair that ‘oh how pitiful’ look immediately shows on their face. For years and years I played the ‘I am fine’ card day in and day out. I was one of the best actresses there’s ever been. I let no one see me having a bad day. At night I was so exhausted from playing and acting like all was well that I would crash as soon as I walked into my house. Nowadays I don’t have enough energy to get out that often much less the energy to get into my previous playing fine mindset. When asked about how I am doing I still answer “I’m fine” because I don’t have the energy to discuss otherwise and I’ve learned that people don’t really want to hear the truth to that question. They ask as more of an obligatory question not because they really care.
Newly diagnosed MSer’s should be offered a class on how to answer everyone’s stupid questions or how to comment when all the sudden everyone becomes a neurologist, dietitian, pharmacist or physical therapist.
Your article was so well written and it’s sad that it touches so many of us and how we all have to learn those three words just to be able to leave our homes.
Jennifer (Jenn) Powell
Dear Stephanie,
Thank you so much for taking the time not only to read but respond. I am better for hearing your perspective.
I think it would truly benefit so many newly diagnosed individuals if they had a ‘stock’ answer. As you well know our disease changes and so do the questions. We go from shielding others to saving ourselves. I wish we could just start with the latter. We deserve that much. Energy is a precious commodity and you know what? So are we!
I’m grateful to be surrounded by people such as yourself who reach out with their truth. You touched my heart today. Here’s to this article being irrelevant one day??
With sincere gratitude
Jenn
Shirley A. Nobbs
I have primary progressive. I have little had very little help from my neurologist. He just says my symptoms are MS related. I got a private MRI, as I didn’t know why I was loosing memory, then I seen neurologist, that was 12 years ago. I finally convinced my family doctor I should have an MRI. He would only consent to one on my head. There are no lesions in my brain, which the MRI report said. I am 76 years old and they say, I definitely have MS but the problem is my age.
Mer
Thank you for this. I grew up in an I’m fine family. My brother and sister both have/had that mantra. It used to drive me nuts until I got my own diagnosis and I lived into their reality. Now I use the phrase with a smile. What can you do, after all.
Beautiful writing Jennifer. Thanks.