“At 47-years-old, Cystic Fibrosis has left me with a lot of stories. It was hard to decide which ones to share. Is my first memory of when I heard a doctor say I was going to die ‘too raw?’ Is it the time I was super excited about my Pulmonary Function Test (PFT) after being sick? How about having my son, Brett? People have babies every day, right? Yes, but it is ALWAYS worth talking about. Should I mention that my significant other, Chad, was also my next door neighbor when we were growing up? And that we were high school sweethearts? Or that his love is so evident he doesn’t even have to say it? And what about my friends? I am so lucky to have a group of friends that have been in my life for over 30 years. My very best friend, Kristen, is more like a sister; my actual sisters – do I include those stories? Do I talk about my morning coughing fits that are so productive I think I’m a reincarnated Lungfish, or is that too gross? Well, it all makes up my life and what I like to call ‘My Adventures in CF.’ Pain, coughing, nausea, fatigue, medications, worry, and more medications, mixed with a tremendous amount of love, friendship, and patience. This is just daily life for me. So, I’ll share what pops into my mind while I’m writing and hopefully it will be interesting, bring awareness to CF, and evidence that love is essential to healing.
A memory that set the the stage for a lot of anxiety throughout my young life happened in a doctors office when I was 7-years-old. My mother and I were sitting after my examination and the doctor, (who I had never seen before and was filling in for my regular doctor who was on vacation), said ‘Mrs. Chase, I don’t think you need to worry about how many sick days Leah has, or if she is held back because of it because she will not live past 10-years-old. She has already passed average survival age,’ (which was true in the 70’s). I still remember how I felt. At 7-years-old, I was wondering why I was even born. I never wanted to see that doctor again, and I didn’t. My mother isn’t much for communication so the ride home was pretty quiet with a ‘let’s forget what the doctor said’ diversion of McDonalds and ice cream.
Now that I’m older, I know she was fighting her own fears about my life. Fast forward a few years; the night before my 10th birthday. Most kids are anxious with thoughts of a party, presents, cake, friends and all the awesome things that make birthdays extra great. I was not anxious about those things. I was trying to be, but, mostly I was worried about falling asleep because it was the night before I turned 10 and the doctor said I wouldn’t live past 10. I was afraid if I went to sleep, I would die. I spent the next day, my birthday, exhausted and afraid. I also spent a lot of the year that way. When I opened up to my mother about it, she said ‘That doctor had no right to say that, and no doctor can say how long anyone else will live. You’re still here so he is wrong.’ I said ‘I hope I never have to see him again.’ She said ‘You won’t. I told Dr. B we would not be seeing the other doctor again.’ She went on to say Dr. B was very angry about what had been said in front of me. I slept better that night but I have always carried thoughts of ‘expiration dates’ with me. It wasn’t the last time I was told I only had this or that amount of time to live. But, the older I’ve gotten, the more I take it as a personal challenge or a double dog dare rather than a source of anxiety. I am fortunate to have strength in an amazing support group of friends and family.
My son Brett — probably my biggest motivator, and he would be surprised to hear that. I was relatively healthy when I got pregnant with Brett. Since fertility is generally an issue, I wanted Brett’s father to know we may not be able to have children, so before marrying his father, I went to four specialists all of whom said some semblance of ‘you won’t get pregnant without fertility drugs and even then it’s a long shot.’ Well, three months after we were married, I was pregnant. I think that is when I knew for sure that doctors shouldn’t give absolutes, no matter what statistics say. The year I was pregnant with him was the same year that carrier testing became available so Brett’s father was tested and we were very relieved that he was not a carrier. Since it takes a gene from each parent to inherit CF, that meant there was no way Brett would have CF. I don’t have the words to explain the amount of stress that left my body when his carrier test came back negative.
I carried him to term and I enjoyed every minute of it. I would hear other women complain about the things that come with being pregnant, like peeing constantly, fatigue, gas, swelling, back ache and I wanted to tell them to be quiet and focus on what was actually happening in their bodies. I was terrified, yet grateful to be pregnant. I drank three high calorie shakes a day to insure Brett’s growth and my health. To me, my health and strength was essential in raising Brett.
Yes, he saw me in the hospital but I never let him see how truly sick I felt because I never wanted him to feel scared or responsible for me. I pushed myself in ways I probably wouldn’t have if it weren’t for Brett and that has prolonged my life. Brett is 21-years-old now and is Air Crew in the Air Force. Like I said, I have always tried to hide how truly awful I feel, and I do this with everyone. every day. This past holiday season, I was very sick and had emergency surgery that didn’t go well. I ended up on a ventilator and woke up with Brett and Chad sitting at my side. I hadn’t seen Brett in 2 years and now this was how he’s seeing me. I was excited beyond words to see him and so very angry I was too weak to sit up and hug him. I tried so hard to sit up but I couldn’t and he just kept saying ‘Mom, it’s ok, you can give me a proper hug when you’re better. I love you tons.’ So, I cried, just like I’m doing now writing this.
Brett spent the next month with me in the hospital every day. Christmas Eve, Christmas Day and even though we made the best of it, I still have so much anger about how our time together was being spent – with me being so sick he had to help me to the bedside commode. I kept apologizing to him and he said ‘Mom, we are together and that’s all that matters. I will always be here for you. Stop worrying. Stop being embarrassed. I am glad I’m here to help you. I promise I won’t be scarred for life.’ I had joked that he will be scarred for life because at one point when he was helping me, my hospital gown (which are not made for small people), fell off. I was grateful to get out of the hospital before New Years and give my son a bear hug. A weak bear hug but a bear hug nonetheless. My sister-friend Kristen threw a party at her house and all of our closest friends were there. They knew how much it bothered me how Brett had spent his first Christmas home in 2 years and how much I wanted him to have some sort of festive gathering outside of a hospital room and they made it happen.
Brett, my friends, Chad, my sister Audrey — they’ve all spent countless hours and days in hospital rooms with me. Bringing me actual edible food. Helping me wash my hair and shower so I could feel human again. I have so many stories of love from all of these people. I always pray I am as much of an asset to their lives as they are to mine. Their strength, patience, and kindness have pulled me through times that I really could have just given up. Unconditional love, don’t be afraid to show it. You may be saving someone’s life.”
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