“The past beats inside me like a second heart.” ~ John Banville
Lately I’ve been thinking about my life before being diagnosed. I try not to do it but it seems to periodically pop into my mind.
Reminiscing is not a bad thing. And actually sometimes the here and now can be so hard that past memories are a great escape.
But my downfall is when my thoughts dwell in the past. I get stuck and fixated on how my life used to be.
It’s like I’m chasing ghost. Haunted by a reality that has long deserted me. Continually searching for a person who has disappeared. But now I have to learn to love my current self. And that’s hard when my body is constantly letting me down. How can I love that?
When I look in the mirror I see my real life. Not the one I created in my head. My mind remembers the old me but my eyes see the new me. I don’t want to admit it but the life I left behind is still the one I want now. Sometimes I spend all day trying to get back to it.
But I’m growing tired of living in the past. Always yearning for the good old days. Craving history instead of making it. I’ve done it so much, I get lost in my dreams. Spending all my free time trying to reach an improbable normalcy. It’s all I think about. And before I know it, I’m no longer living. I’m just wishing my existence away. Sitting on the passenger side watching my life pass me by. Daydreaming about what was, instead of what is. Battling to keep my sanity as my sweetness for living is slowly being replaced with bitterness and resentment.
So as I continue to slowly sink into uncertainty, I look for remains among the ruins by diving head first into my past. Trying to retrieve what was stolen. Searching for anything that was once mine. Being haunted by the spirits of hopefulness as I attempt to ignore the fiend that lives inside of me. Screaming at the ghost. Telling them to stop haunting me, while struggling to focus on making new memories. And convincing myself, there will be better days. But my life will never get better until I learn how to stop chasing the ghost of my past.
Omg this post made me cry as this is my life with MS. God bless you and all of us with this disease
Beautifully written, I find myself daydreaming more than a soon to be 42 year old should. I was diagnosed at 22 years old so in some insane alternate reality I’m still waiting for my life to start. The worst part is this disease is a one way street. I always try to play the, if I could just stay at this level, but eventually I move farther down the street. That’s the saddest aspect , the car won’t stop (it may slow from time to time) and will never turn around. It’s just a question of how long the ride is… I enjoy reading your stuff, thank you for sharing. What might be talked about the least is the things you lose that you never thought would be possible like your dignity or pride, coming from a guy, zero hope of being John Wayne, But the worst for me is I had it great, i had outsmarted life, I was actually living on the beach playing golf everyday. Now I pee though a tube that sticks out of my stomach into a bag. If that isn’t one extreme to the other. I joke because it’s all I can do, I can’t defend it like it’s cool to carry your urine around. All kidding aside nice essay
*sorry for any spelling,grammatical or just plain jibberish that I may have written it’s the MS’s fault. Cheers
I love your posts. We all love to look back on life when we could do things. I was in RRMS for 20 years and never really miserated over what I couldn’t do during an exacerbation because I knew it would pass. Being in SPMS for 14 years, it is a different story. I am getting older and am forgetting vignettes of my life. example: I was eating dinner with my daughter and complimented her on her stemware…she said, “Of course you like it, you gave it to me.” I couldn’t remember that, but I told her it made me feel good that I had given her such lovely stemware. I forget having eaten at a restaurant…and my husband points out that I had and what I ordered. He is very understanding and we laugh about my spotty memory. There is no rhyme or reason…I remember some things so clearly and some things are just gone. I guess that is one way to have less to look back on. My husband calls it “sometimers.”
Excellent sentiment on how I also feel. You do understand!
Love this post! Thank you. Hope you are doing as well as possible. I keep trying on a daily basis. Sometimes when I am alone, I give MS a severe tongue lashing. Take care
I feel like you just wrote my own story.
Nicole you are a gifted writer, I save all your posts as the remind me of a beautiful piece of art, an image that stays with you long after you have left the gallery. They inspire, they touch the soul that only one who knows could do. I look forward to the day you publish your first book.
You are so real.
You put all of our thoughts into words!! I often wonder what “old” age would feel like without MS! I have had it for 25 years and am thankful that I was able to do all the things I did with my children, but sometimes I can’t help but want to do those things with my grandchildren! I have lost a lot with this disease including a marriage of 37 years-but I try to count my blessings and know that there are many things I have that others don’t. The hardest part for me was having my oldest son diagnosed last year- he is 36, two years younger than I was when my symptoms began. I worry for him and my other children.
Anyone with MS can’t help but remember their life before being diagnosed. I, too, get angry at my limitations. God’s season sends me profound messages which I sometimes receive. I was in Florida waiting to get on a plane. Thankfully, the airline had facilitated my movement through entry and I would be one of the first to board. I saw a little girl about 9 who was in a wheelchair. Her hands were curved in, her feet awry, and her eyes were blank. I begin talking with her mother and found out she was born with cystic fibrosis. It hit me that I had had 59 wonderful years in the fast lane. I thought about all I have been able to do and was fortunate enough to accomplish. And this child would not have any of those years. This helps me whenever I’m very discouraged. I look around my friends and family and know that good health is just a roll of the dice. My job is so to try and make the best of my life when I can. Things to this event, I can more often think about the past and be thankful that I had it. A friend with MS told me that it’s our job to handle what God sends us. And it is quite a job! So grateful for your blogs Nicole. You are a very special and beautiful lady, inside and out. We all depend upon your words of understanding.
I once heard an appropriate saying-I cried because I had no shoes until I met the man with no feet. We all need to focus on our blessings, no matter how small.
Beautifully stated!!! There are so many emotions you feel dealing with ms, the uncertainty of it, missing the old you, etc. You are only human to feel that way, but I pray the thoughts don’t linger!! I’ve had ms since 1993, and I am 71 years old. My thoughts are like yours, plus+.
That is so on point. I know what you mean.
Hi Nicole! I often do the same thing, living in the past. My third and last child will be going off to college in the fall, and it’s hard not to think of all the things I used to do with the kids that i am no longer able to. We have to live in this new normal, but i guess it’s ok to think of the “good old days” once in a while. I wish you well and pray for you often. You are an inspiration.
Nicole, would you like to follow the Wahl’s Protocol with me? I just purchased her cookbook and received it yesterday in the mail. I would really like to share it with you, and we get healthier together. I met you last year at the MS Getaway in Woodworth, La, and I really enjoyed your company. I’ll inbox you my number and email address so we can communicate.
Blessings Nicole!
Wonderfully put as always. Living in the past is easy to do. We all need to live for today.