Very Much Alive

Posted by: 
Rima Manomaitis

My name is Laura Cynova, I am 29 years old and I was diagnosed with Cystic Fibrosis when I was almost three years old.  Today I have been married for almost ten years and I have two beautiful children and I live every day making sure that Cystic Fibrosis doesn't run me or my life.  I have been a recipient of the Cystic Fibrosis Lifestyle Foundation grants several times now since 2019 and I am so thankful for this organization.  I started out by having a gym membership at a local gym where I spent an hour and half every day of the week pushing my body to the limits and then some.  Having the opportunity to exercise with all the equipment a gym offered without worrying about paying for yet another part of my CF care, especially one that insurance doesn't cover at all, was such a big help for me.  Along with the modulator Trikafta, this peer grant allowed me to do so many things for the first time. 

One particular accomplishment was when I was jogging on the treadmill in the gym one day, about 3 months after starting Trikafta, and I was pushing myself to see just how far I could go before my lungs just couldn't handle it.  I looked down when I couldn't jog any longer before my legs turned to jello and the odometer on the treadmill said "1.4 miles."  I was astonished to see how easily I had made it to one mile, and even more amazed that the reason I had to stop was because of my legs and not my lungs.  In fact, I remember thinking that I could push myself a little more because my lungs were showing no sign of fatigue.  I barely made it off the treadmill and onto the floor before I broke out in tears in the middle of the gym.  I just collapsed as the many emotions washed over me.  The biggest emotion for me was that I am so healthy now that I can run a mile and I realized that I had been taking it for granted.... I was taking normal everyday life things for granted whereas before I would be thankful for each breath. 


How many of my friends have passed away before getting to experience the "normal" life that Trikafta would bring?  I decided that I would run a 5K in honor ofthose that passed before seeing the miracle that Trikafta brought.  Unfortunately, COVID put a stop to that idea and I had to table it.  In March of 2020 before Arkansas shut down my husband and I had bought a piece of land that had a large wooden storage shed that we fit everythilng we owned into while we built our house.  We lived in a tiny camper during the pandemic and I was forced to stop working out in the gym and moved back to working out at home with very little equipment, outside in the blazing Arkansas heat.  By June I had to stop working out alltogether because it was just too hot to safely workout outside. 


We moved into our new house the first part of September 2020.  My husband and I were trying to decide at that time what to do with the giant shed now that it wasempty, we had thoughts to sell it and use the money for something we needed for the house, but I remembered the CFLF grant had stated that we could use our grant money to buy 

equpipment. I applied for the grant to get a treadmill since I was pregnant at the time I couldn't really work out like I had in the past but I could walk.  I was awarded the grant and I decided to turn the shed into my own home gym.  We had to put off the construction of the gym for the first of 2021 because we were coming into the holidays, getting closer to my delivery date for my son, and we just had so much going on.  

I was so excited about getting to build and design my own home gym and I started to brainstorm ideas of what I wanted it to look like, how I wanted to decorate and what equipment I would want.  My brother in law was getting rid of a lot of his dumbbells and a weight bench and asked if I wanted it, to which I excitedly said "YES!"  I already had my treadmill, some resistence bands, floor sliders, yoga mats and smaller dumbbells.  When I started to envision my gym I wanted to put inspirational quotes on the wall but I couldn't really find any that "fit" how I felt about the gym, and about my thankfulness that Trikafta gave me in my health. 
I had the idea then that I wanted to honor those that can no longer fight and for those that are still fighting CF everyday.  Metaphorically, the grim reaper has been hot on my heels for most of my life.  I can think of multiple times that CF almost ended me, one time that my mental health and the emotional toll that CF can take on us almost made me take my own life, how CF has taken the lives of my friends and how CF itself can be a grim reaper.  Death has tried to grab me so many times and I wanted to incorporate that into my gym. 
I decided that I wanted to have a big mural painted on one of the walls to represent this.... the question was "what do I put on the wall?"  One day one of my CF friends posted a picture of a shirt she loved that had a skeleton hand holding a rose and it was perfefct!  CF was once referred to as "65 Roses" and the "grim reaper of death" was always trying to grab that beautiful rose and destroy it.  So I drew that image.... the bony hand of the reaper reaching up to grab the rose.... but never quite touching it.  "Death has lost its grip on me," a lyrical line in a worship song that I absolutely love sang loudly in my ear as I was drawing this skeleton hand and I knew I had to put that on my mural.  Another thought that a friend said to me in regards to almost dying herself while awaiting a double lung transplant was "I'm very much alive," and I thought that was the perfect saying for my mural because all of us with CF are "very much alive" regardless of what CF tries to do to us or tell us.  I knew I wanted the mural to be dramatic, metaphorical and beautiful, but I also wanted it to be a reflection of my  own life and be a motivation to other people.  I also wanted to put the names of those that have passed away as a reminder that each breath we take is only borrowed and to remember to never take it for granted. 
Once we got the sheetrock hung and finished I was able to start painting.  I started with just a basic grey wall so that I had a neutral canvas for my mural.  I posted on a local facebook mom group asking if anyone could take the picture I drew on paper and blow it up onto the wall and help me paint it beccause I can't draw large scale.  I was put in contact with a very sweet woman named Kym and she came out every night for over a week and helped me.  I made sure she was fed and felt welcome while her kids played with my oldest and we spent every evening from about 5pm until aobut 7:30pm painting and conversating.  I was so thankful that she agreed to hlep me with such a big project without charging me.  Finally, my mural was finished, and my vision was brought to life.  Seeing my vision completely finished brought me to tears. 
The skeleton's fingers don't touch the rose stem, they are so close but they just can't grasp it.  The reaper will always be so close, but yet so far away from grabbing me physically, but also mentally and spiritually.  I am very much alive.  All CF patients are very much alive.  Death has lost its grip on my because I have Jesus on my side and He is healing me from the inside out.  Trikafta is healing me, the beatuiful purple rose is vibrant, strong, and open just like the life and path I now have. 
The CFLF has granted so much equipment for my gym;
TRX Bands
Punching Bag
Aerobic Stepper
Resistance Bands
Boxing Gloves
But they also covered the cost of my full gym membership from 2018-2020. 
When you donate to this organization the money goes directly to CF patients just like me who are just trying to survive. CF is so expensive medically we rarely have enough to afford things to keep us active and to enjoy. Thank you to all of those that have donated to this wonderful organization

Help Others Live STRONGER and LONGER- 


My name is Laura Cynova, I am a 30 year old Cystic Fibrosis patient as well as a mom to two beautiful kiddos that have CF Related Disorder. I enjoy reading, exercising, swimming and spending time with my family. I married my husband, Nathan, ten years ago and from day one he’s been the most amazing, supportive man I’ve ever met! 


Add new comment

Filtered HTML

  • Web page addresses and e-mail addresses turn into links automatically.
  • Allowed HTML tags: <a> <em> <strong> <cite> <blockquote> <code> <ul> <ol> <li> <dl> <dt> <dd> <p> <h3> <h4> <h5>
  • Lines and paragraphs break automatically.

Plain text

  • No HTML tags allowed.
  • Web page addresses and e-mail addresses turn into links automatically.
  • Lines and paragraphs break automatically.
Support CFLF