“You have to find your peace within the chaos and still find some sort of mission.” ~ Ta-Nehisi Coates
I’m the Mad Hatter. Feeling looney. Alice falling down the rabbit-hole. Waking up lost. Joseph and Mary following a star. Bacon and eggs with a side of depression at breakfast. Unable to see the forest for the trees.
Why am I so tired? Can’t get my bearings before morning medication. The ambiguity is taking a toll on me. Making my heart blue. My thoughts frantic. My weeping common. Such a tortured time.
Soul touching sorrow saturates my bones. Filling me up. Flooding me with grief. Keeping me trapped in my own mind.
Anxious. Quarantining on the weekends. Listening to The Weeknd. Needing to be outside. Watching Inside Amy Schumer.
A different colored mask for every day. Paranoid. The newspaper says the pandemic is over. But I can’t afford to get sick cause I’m already sick.
The room is spinning. There is a high-pitched ringing in my ears. Sitting sideways. Standing off-balanced. Vertigo. Eating prescribed poison trying to stay functional. The pharmacist keeps my mouth full. Helping me make it through the day. But these side effects got me feeling like I’m playing games with my life. Taking medication, I know nothing about. Ten stories up. Jumping out the window with no parachute.
Lusting to be cured. Swimming in a deadly sin. One transgression down and six more to go. Eyes blood shot red. Water crystals stain my face. You can see the imperfections even when I’m not crying.
Afraid of losing touch with friends. Sad because they have the life I desire. Tired of feeling like I deserve better. Furious I got a circumstance no one wants.
Living out of sync. Scared of my own shadow. My broken parts terrify me. Dismissing the facts. Denying what I know is true.
Medicine always on call. Sleeping pills close at hand. Napping until the anxieties are gone. That’s how I cope.
A no mirror policy in my house. Shielding my eyes from my reflection. Sometimes angry for no apparent reason. Cremating my feelings so I don’t scare people away.
Mouth stays dry from swallowing so much pain. Eyes stay wet from all the lies people tell me. You can smell the stench of heartache on my breath. Hear the torture in my words. Taste the grief on my lips.
Constantly looking for peace. Looking for happiness. Looking for something secure. Feeling crazy like that glue. Swimming in faith while drowning in reality. Tired of being tired. If I could end the sorrow, I would do anything. Give anything. Cross my heart. Hope to live pain free.
Attempting to go unnoticed while wall walking through life. Struggling to fit in. I take it one day at a time. Trying to be patient. But it’s getting so late. I’m getting so old. And this sequence is getting so tedious. Making me a living contradiction.
Touched by an angel. Because I’m still here. But the devil is never far away. Residing inside my body. Controlling my movements. Obscuring some of my greatest life moments and childhood memories.
Trapping me between the sands and the ocean. Closing the walls in on me. The pressure so great I can’t see clearly. Adsorbing all the air from my lungs. Paralyzing my vocal cords. Blurry vision is common place.
Ending my day sitting motionless in my chair. Watching Seinfeld reruns as the television and my body tells me, “No soup for you.”
*This Post Is Featured In HealthCentral 3-Part Video Series My Chronic Life: A Voice for MS.
Thank you for giving a voice to us: the invisible. I have been bedridden for a few years now, after 39 years of MS and every treatment imaginable (HSCT, CCSVI treatment, intrathecal methotrexate included). Can’t sit up due to extreme vertigo (have had the intense eat ringing in ears for about 6 months now, too), and severe. No more wall walking for me; I fall even when holding on with both hands.
I have so many thoughts going through my mind after reading this. To begin, you are a wonderful writer and your mind is very accute. I am in my 40th year with MS and wish I did not relate to so much you have described here. I wish I could walk better and stand longer but I am very thankful that I can see well enough to nread books and watch TV. My husband has an engaging sense of humor and a good laugh seems to lighten my spirit each day. I am so sorry for the burdens this disease places on you. Trying to focus on the positives helps me. The negatives add up, clearly and the limitations are life changing. For myself, I respect the limitations as it is dangerous not to. Thankfully, my scooter, walker, cane, and husband’s arm has kept me going. Your summation was so heavy and overwelming. At 74, my age is going to give out before this disease wins, I think.
Thank you so much Nicole. Your words are so incredibly relative. I hope you can find some comfort in the fact that so many of us share your thoughts and feelings. MS is so frustrating and unpredictable. You are an incredible woman and spirit. I appreciate the time and effort you put in to your posts. Looking forward to the next. Susan.
Yes, for years now I have marveled at your gift for writing, you express what many feel but can’t share: you do it for them. You put their emotions on the page so others can have a glimpse of the life you fight so hard for. I have so much respect for you and what you have offered up, to so many. I wish you didn’t have to pay such a high price for sharing what you know.
Great writing its exactly how I feel at times
Amazing writing, don’t give up you have a gift. You are explaining how so many of us fellow sufferers feel
Amazing writing but so down it breaks my heart. I wish you would turn the blog into a book. Is there energy for that? I have followed ypu for so long. I have seen your MS progress. Wall walking. How I identify with that! My MS is progressing too, but did not progress that quickly for the first 15 years. The last 15 it has spend up a lot. You were always my hope as a model. Now I hope you find a way to maintain some joy during all this.
Your writing is so on target. So well expressed and powerful
Wow. Very deep and meaningful. I am so sorry for your pain.
You write so honestly. I feel so strongly about your brutal description of your situation. I understand that the fatigue is so exhausting. Sending you warm greetings and hugs. Helen
What an amazing writer you are! I wish you the best.