“My secrets must be poetic to be believable.” ~ Mick Jagger
Napping all day. Alarm clock turned off. Please don’t wake me. Gimme Shelter. I want to stay a sleep until the evil leaves. Dozing until I feel better. Existing in a culture of trauma. A Beast of Burden. God and monsters rule my life. Every day I pray for help. But the heavens seem to only watch as a demon destroys me from the inside.
Annoyed at the world. Frustrated with life. Furious at the Universe. The preacher tells me it’s no one’s fault. But I can’t help it. I’m still mad.
In private, wrestling with God. Pointing my finger to the sky and asking why. In public, smiling and masking how I really feel. Trying to save face by living a lie. Talking to myself because no one understands. Keeping it inside so they don’t think I’m crazy.
Insecure. Living in my head. Sharing my mind with double negative thoughts. I Can’t Get No Satisfaction.
I try to distract myself. But madness is a magnet that keeps attracting me. News headlines make me worry. The stories my husband tells me of his childhood make me sad. And the words of the people in charge confuse me.
I stay prepared for anything. The unexpected. I’m Jumpin’ Jack Flash. Keith Richards on bass. Spending my days hitchhiking with therapeutic medications close at hand. It helps to Start Me Up. Meditation and slow breathing keep me calm in crisis. Cooling vest and ice water regulates my temperature. Sleeping with my fingers crossed wishing the universe will allow me to wake up to see the sunrise at least one more time.
Sometimes I’m afraid of living in this world. But I’m also inspired by the beauty of humankind. I still believe in miracles. I still love life. And that love makes me happy. Even when existing in this body is hard.
The cynics say You Can’t Always Get What You Want. But that will not stop me from trying. I’ll just keep going like a rolling stone.
Nicole, I have had MS FOR 21 yrs, I am confined to a scooter 24/7, I cannot walk, I have limited use of my right hd I type with my index finger, my left hand & arm are useless. In July I was diagnosed with stage IV primary peritoneal carcinoma, cancer of the abdominal lining. It is terminAl. Life goes on for my husband & I. We find joy in everything & have never dwelled on my MS or now cancer. Please be more positive in your daily life. You never know when it could end.
Thank you, I feel like a rolling stone slowly getting my balance and tumbling downward into cement. Heavy legs and heavy thoughts
Your blog describes the feelings I, too, struggle with every day. A big issue for me is that people really don’t understand what MS is like. My reasonable side argues back that I wouldn’t believe the symptoms myself if I didn’t have the disease. I guess the bottom line is: you have to walk in my shoes.
As a Stones fan, I’m particularly fond of this post my friend. But I hate that you go through so much. “A smile relieves a heart that grieves” from Waiting on a Friend sometimes helps me, though it’s not always so easy… Big hugs my friend…
Thank you for boldly writing your truth. I’m so impressed by you and your writing. People who don’t live with this monster MS don’t have the foggiest idea what it’s like. I’m even shocked and surprised now when new weirdo symptoms appear. But we plug along, smiling, worrying about the other person’s feelings. It’s good you can be your beautiful self in here. I love you and your writing. And the Stones – great shirt you’re wearing!
Don’t be afraid. Keep on trying. Love both of ya!
I’m continually amazed by your creativity.
Keep on posting your thoughts and feelings! Happy Thanksgiving to you and your husband. ✝️❤️
Brilliant! Emotional Rescue
brilliant! Emotional Rescue