Breaking The Silence
Last updated: May 2022
For the longest while, I have been debating what the topic of my first post on here should be. I don’t want to be too graphic, I don’t want to talk about things that have already been saying. Living with cystic fibrosis makes you understand and come to peace with things that are out of your control.
During the fall of 2020, I was put on a ventilator and was told that there was nothing more that could be done. I was told to get my affairs in order because I was going to die. When I heard that for the first time I felt the weight of the world being lifted from my shoulders. I felt relieved. I felt that I had achieved everything I wanted in life.
The people I love
Ever since I was young, I had dreamed of creating my own family. I love every single one of my given family, as I don’t think I could have been any more fortunate. My grandparents loved me beyond belief, and I cherished this because I know a lot of people who have never met their grandparents.
I then have my chosen family. This group of people genuinely love me and want to keep me safe. They show me love when I don’t feel like I am alone and a burden on all of them. They fight for me when I am at my weakest. They never backed down, even when there was no hope of me surviving. The people I love stepped up their love and genuine words of encouragement without me asking anything of them.
Hospital to home
Because I was hospitalized for the majority of 2020, I was so used to being alone in my hospital room, being lonely felt natural. Of course, my parents would make the effort to visit me as much as they can, while working 5 days a week, and sometimes working the night shift.
To some extent, I feel almost completely unbothered when I had to be admitted for whatever reason. The hospital smell, the smell of medical supplies, the IV machines making their little sounds while emulating their soft green nighttime glow. All of this felt normal, but those feelings turned to adjusting to home life a bigger chore than what I thought it would be.
There is no doubt I was counting down the days to when I would be discharged from my transplant that happened on the 25th of 2020. But another part of me was very anxious, very sad, and very scared because my mind was so fixated on the question “what do I do if something happens to me at home, away from the hospital?”. Though I am one-year post-transplant, I still feel these feelings but to a smaller effect.
Nothing but love
Life just seems so simple whenever I am in the hospital.
Again, I am super happy about being home for long periods. My friends have the option to hang out with me, as do my blood relatives. I think having these feelings are normal, as I can distinguish what is going on with myself mentally.
To all my blood relatives who still keep in contact with me, I have nothing but love for you.
Abdul, Annette, Allie, Addy, Shiva, Sarah. I love you guys so much! Thank you for being there for me, no matter what the situation may be.
I Love You.
Have you participated in clinical or market research before?