“Learn from yesterday, live for today, hope for tomorrow.”
Albert Einstein
I am Paola Celi, born and raised in Quito, Ecuador. I am 38 years old. For the past 13 years, I’ve been living in Texas, where I am currently working as an accredited staging professional and I am also a licensed realtor. I am passionate about what I do.
Since I was a little girl, the word hope has had a powerful meaning in my life, for you see, I was only 12 years old when I started to feel different. How can I forget that afternoon when I was trying to do my 6th grade math homework? For the first time, I felt helpless. Why was it so hard to write a single number?
After a lot of tests, including an MRI and brain scans, I was diagnosed with Juvenile Parkinsonism. The only thing I knew about Parkinson’s was that my grandfather had it and he spent most of his time in bed, unable to move, talk, or eat by himself. This is when hope became meaningful to me.
I hoped to live like the rest of my friends, to be a normal girl who happened to take medications to keep myself active and my symptoms under control.
I also hoped nobody would find out that I was going through so many changes, both physically and emotionally. I now believe that it was a mistake to try to hide my symptoms, and that doing so increased my anxiety. My Parkinson’s was getting worse, more side effects started to appear. There were days when it was so difficult to control my dyskinesias. People said I was hyperactive because I moved a lot.
Though living in this way was difficult, I didn’t let Parkinson’s stop me from pursuing my dreams.
I finished high school and moved to England to work for one year as a Spanish Language Assistant in a boarding school. I saved some money, and with it I traveled all around Europe as a backpacker. I also visited Egypt. After that year, I went back to Ecuador to start college and get my economics degree. I worked as an analyst in the stock exchange.
I hoped that one day I would meet my soulmate, and I did. We got married and we moved to the United States. I left my country, my family, and my job to start my new life next to the person I loved. It is difficult to be so far away, but it proved me that despite my PD, which is progressing and taking part of my body and my mind, I could do anything I wanted.
I became a wife and, later, also a mom. I have two beautiful and healthy sons. I believe my PD worsened after my second child was born. It was hard; changing diapers sometimes was so frustrating but love goes beyond the stiffness and I found a way to do it.
I try to make the most of everyday, because life is too short to sit and wait; it is a story and we are the writers who can make our life speak, to others and to ourselves.
I would not change anything of what I have lived.
I am blessed in so many ways. Medications still control my symptoms very well, and I have to say I have more good days than bad ones. I believe that everyone should have good a quality of life, which is why we need to keep our hope growing as our story unfolds.
It has been 26 years since I was diagnosed and everyday I wake up wondering how my day is going to be; perhaps I will have “off” episodes or maybe not. Today is what I have, the same is true for you, and we have to make the most of it.
I love my busy life as a wife and a mother. My husband and our two sons are my reason to be brave. Hope is what keeps me going in life. Since I was a little girl, I have known that life does not need to be perfect to be wonderful. So I promised myself never to give up.
Of course, every day is a new challenge. The challenge starts the moment I open my eyes after just a few hours of sleep. I have to wait 30 minutes, and sometimes an hour, for my medications to kick-in to start my day. Often, I cannot move well enough to get out of my bed if I am not on my medication.
During the day, I experience “off” episodes or frozen moments, which make me lose my balance and fall. I have been three times to the emergency room because of those unexpected falls. It is challenging to move around the house when my muscles are stiff. I have to crawl from one place to another.
The biggest challenge I have been through daily is to keep training my mind and convince myself that despite the progression of the disease, which, little by little, wants to control me, I have to prove to myself that I am strong and I can still fight.
It is not easy. Sometimes it feels as though I will not make it through the next day, when my challenges begin again.
This is when hope kicks in.
I do not know a life without Parkinson’s. Every day since the day I was diagnosed back in 1994, I have had to learn how to adapt my life to it. I also do not know what the future will bring me, but I will keep hoping that one day soon new treatments (or, why not a cure?) will be found.
I believe too strongly that we all have the right to a decent quality of life not to fight for it.
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Paola Celi is 38 years old, married, and the mother of two young sons. She lives in Houston, Texas and works as a realtor and staging professional. She was diagnosed with Juvenile Parkinson’s Disease at the age of 12.