For my free topic day, I thought I'd write about something that's been on my heart a lot recently as I go through a difficult season of health.
My whole life, I've fought hard to be someone who accomplishes something great in life. I was a smart kid, and I did well in school. I was motivated to achieve goals, and I set my aspirations pretty high. College was when I went through a period of realization that CF could and likely would get in the way of achieving the impactful life I yearned for. I cycled through feelings of anger, grief, and fear, but always ended up firmly planted in determination. Determination that I would live a normal life no matter what my odds were; determination that I would live way past that average life expectancy if I just ignored it and pretended it didn't exist.
The problem with this determination that drove me so hard is that oftentimes it was actually just a romanticized version of denial.
Personally, I'm not going to sit here and preach that a sense of denial with an unpredictable disease like CF is a bad thing. In my case, a healthy dose of not wanting to acknowledge statistics and give them a hold over me allowed me to reach higher than I probably would have otherwise. Knowing I had some tenuous early expiration date out there was always in the back of my mind, but I didn't let it stop me from striving for things I wanted to achieve - in fact, it made me more determined to accomplish things, and in my mind my little accomplishments were all the more impressive because of what having CF could have meant in terms of never finishing those goals.
I'm glad that I didn't let CF slow me down and stop me from achieving big goals I had for myself. But somewhere along the way, the drive of denial got stronger and stronger until that was all that was driving me instead of any realistic determination.
About 1-2 years ago, I started feeling an intuition that CF life was about to catch up with me, and I needed to slow it down. I didn't heed the feeling. It made me angry, and I was "determined" NOT to give up on the future I had planned, in the order I had planned it - get a job, become a good lawyer, work for 1-2 years, then start a family. I would NOT let CF interfere with this perfect plan I had.
Even as that first year went by and I could feel my health declining, I refused to admit it. I just knew all I needed was more rest, and to get better at my job so that I wasn't stressed as often, then things could continue as I'd planned. Then one illness succeeded another, and another, and another, but still I wasn't ready to completely give up my career plans that I'd worked so hard for.
And then it all came tumbling down in the span of 6 months. And I finally had to acknowledge my body isn't like "normal" people's bodies, and my life necessarily cannot be like theirs either. It was long past time to leave my job and focus on my health.
I wish I'd heeded my body's warnings and intuitions sooner. But my denial about what this disease could do to me, and how little control I truly had over it has led me to a current place of heartache, regret, and questioning that I think could have been avoided.
So my message is this: Set your goals high, CF fighters! Don't let this disease define your hopes and dreams, and work hard to achieve what you've set your mind to achieve. BUT...
BUT...
Listen to your body and your spirit. It's ok to put your health in front of your aspirations. When the time comes to decide between letting go of a dream or your health, it honestly might be the hardest decision your ever wrestle with. But don't let pride and denial get in the way of taking care of yourself. Don't push so far that you don't know if you'll be able to get back to a good place when you finally decide to try. It's ok to let your health be a primary focus in your life. It doesn't make you less of a person. Don't be afraid to find your healthy balance between truly living life and making sure you have plenty of life to live.
I had a fast and unexpected decline as well!! It was so strange because I had ALWAYS gotten back to baseline so even though I knew things could remain bad I never actually believed it would happen. Why would it? I always bounced back easily. Denial is absolutely a part of CF life. I am sorry you had to go through a decline. It is absolutely terrifying and an ugly reminder of how unpredictable and absolutely horrific CF can be!
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