Forging ahead in order to return.
This is what I have done my whole life. From the time I was born, to the time of diagnosis weighing 9lbs at 9 months; then even after diagnosis, still only weighing 12 pounds at 12 months. From those early years of fighting for my life, even when I didn’t know that I was.
From the time I had to take 2 years of preschool because I was behind the other kids. From all the time I spent studying my math flash cards, practicing the alphabet, and just trying to catch up and be normal.
From the time I set my alarm or just go up earlier on the weekends to get my treatment done to be “on-time” with everyone else. To get home after school and get my evening treatment done as fast as I could to jump in with the games that already started.
From all the times I never said a peep about having cystic fibrosis because I never wanted to be treated differently. I never wanted anyone to feel sorry for me, and I clearly have never wanted to be treated differently. I still do not to this day and detest the thought of it. It actually makes me want to vomit.
From all the times I just kept all my anger inside because I didn’t want anyone to know or that this disease to know that it had me. That it had taken over me and it in some ways in different times in my life it felt like it won. As I have learned, CF was never a game. I just had to learn, while still learning every day, what it is teaching me is that I am only the student. I am never smarter than it or should I ever pretend to be.
From all the times that I have worked so hard to try and become like any other person – at least on the outside.
And perhaps, all this working comes from never being able to trust time, even knowing that is the very thing I need to trust. It is inches away as soon as I get close to it. You can never truly feel the weight of it. It is like placing your hand in water, striving to hold it, only to seep through your fingers leaving you with the wetness of a few moments before but no proof it existed at all.
But something I have learned – I am not forging ahead to return to a place, or to catch time in its place, or to catch up with everyone swirling around me, almost taking ahold of me – but I am forging ahead to return to a feeling. A feeling of trust, love, friendship, kindness, calm, stillness, all wrapped-up in warmth that fills you, literally overcoming you.
The feeling is so full when I think of kindness in my life, tears fall. When I think of the gravity of certain relationships and friendships I am in disbelief that can this actually be true or will it slip away? It isn’t the people, place, or thing, I am truly questioning, but I am questioning trust – the trust in life? I am sometimes afraid it will be taken away.
I believe when you are born with such an uncertainty, you cannot be certain of anything. It does not and I think cannot come natural. I know this is the honest truth for me because tears comes to my eyes as I type this.
As it goes, it falls on this omniscient, ever powerful, thing called trust.
A trust in everything.
And so we continue to learn as a students do. I am not going to pretend I know everything at the end of this, because I do not.
The only thing I know is to find the rhythm, then close my eyes, feel my heart, and be open to what all life has to offer. Try and believe that trust will fall heavy in my hands just like the water I knew once did. Practice and do things every day that make me happy and try and bring that happiest to others – even if that sounds corny as can be, I truly mean it.
And I pray I never stop hearing that rhythm that beats so loudly in my head. I do not want it ever to stop.