“We have to dare to be ourselves, however frightening or strange that
self may prove to be.” – Mary Sarton
I wish I had a boring life.
I would be a mom with two kids and a stay at home wife.
I’d watch TV half the day.
Then shop the other time away.
I’d have lunch with friends.
Then, the next day, meet them again.
Go dancing on weekends and stay up late.
Every night, dinner with my husband is a usual date.
No medicine to ingest. No shots to inject.
I can go all day, no need for rest.
No doctors to see. No nurses around.
I’m always happy, you never see me frown.
I wouldn’t have to explain why I’m in a wheelchair, because there would be none there.
I would go to the movies and watch it from beginning to end.
I would run at the park with all my old and new friends.
I would sleep all day by choice.
And when I spoke, everyone would respect my voice.
No more smiling out of fear.
I’m the best at everything, the envy of all my peers.
My husband would be my husband, not my caretaker or nurse.
I would love that the most, because that part hurts the worst.
Am I wrong for wanting to be like everyone else?
I’m sad that I feel this way, but I really wish my life were a cliché.
Is there a “normal?”
What you describe may seem ideal, but it hardly sounds normal. A mom who can sleep all day and/or go out dancing all night sounds like fun, but who is this tireless Stepford wife? Wouldn’t the nurse/writer side of you grow bored?
I tend to believe life’s obstacles are the marrow of life, but then I may be saying that from a self serving angle as my family has lots of obstacles. That said, I take great pleasure from the times I see my friends, for I have fewer now than in the past and our visits are often months apart. I can’t take them for granted and am forced to treasure every moment. “Youth is wasted on the young” is very true.
I know it’s hard and some times daunting, but take solace in the inspiration you provide for all of us unsure in the normalcy of our emotions dealing with all MS throws. Yours is the normal we look to in our times when we need to know somebody else understands.
Thank you.
U took the words right out of my mouth! 🙂
Normal people do not understand all we have to go through to just get through the day, Thank you for inspiration
Gail, I call them able bodied.
I have those moments too. I appreciate you giving a voice to those feelings. You said so well.
I WISH I knew the truth! I’ve been Probable for 20 years! It’s SOOOO frustrating!! I just want to know yes or no. I don’t even care anymore what it is. I just want to know!
Love your honesty. Your poem expresses beautifully what we yearn for.
Excellent post Nicole. How nice it would be to have a peaceful, cliche of a life. It isn’t true to our real world however and without the experiences that we have had in our ms lives we would probably be really bored. But with all that we now know…boring would be good…a little, “Lucy, I am home” might be nice…
Heartfelt poem. Very touching.
I find my self getting mad or upset reading facebook posts. And some days I see there pics and all I can do is smile. Hugs my friend
Just found your website yesterday. . . I’m really glad to find a place that isn’t all sunshine and roses about MS. I don’t have it; my husband does, but it’s really advanced and he’s really young and it’s really changed both of our lives, and I just get so frustrated at all of the “I have MS, but it doesn’t have me!” messaging out there. It does have us.
Nova reader,
I’m glad you found us! I dread that statement to! I’m the first to. yell out Well, it got me all wrapped up!
When people are in RRMS, it is understandable to not be had by this disease. I used to think MS was an acceptable disease since it wasn’t life threatening…just life altering during an episode. And when it went into remission, I felt things were great. But when it became SPMS, well, that was permanently life altering and I could no longer go without being identified with the disease. I started to tell people I had MS rather than let them think I was drunk or mentally disabled. I have been going through the realization that this is truly awful as I could no longer stand up with a cane or support myself standing. I need help using the bathroom. And when I am away from home, a small panic sets in…worried about having to use the bathroom. For some reason I can’t explain, things have improved a little over the last couple of days. I have actually been able to support a small amount of weight on my legs…not standing up straight or walking but being able to lend some support to my husband when getting into the wheelchair or into the car. I actually feel paranoid about jinxing the improvement. In spite of all of this Nicole, I m still optimistic. I am excited by the progress in stem cell research and am watching the remarkable progress being attained by the patients of Dr. Doug Broeska and his stem sell study. AND I still have the eyesight and improvements made by Dr. Damadian and Dr. Rosa when I joined their MS study having no regression since their treatment in the feeling in my abdomen, no bladder infections or chronic constipation…and I can still whistle and put in my own earrings.
Hi Nicole, WOW! as Laurie said, yes this hits too close to home for me as well. However, I still try and find all the good things in my life. Everyday of course is not perfect and I too at times hide behind the smile and fight back the tears especially in front of my children. Again thank you for sharing your thoughts with us.
Nicole,
The part about smiling out of fear seems to be a everyday event. The smile that hides the pain and yet sometimes gives us hope . The pool is a renewal of our spirit and our body as we are not disabled but merely a swimmer. Thank you for the visual of green hope in our daily walk this quagmire!
It breaks my heart to read this, but I wish my life were boring too. Maybe that’s why it hurts to read it – it hits too close to home.