My head is buzzing. I am not sure why my head is buzzing – I think I need to exercise. I will, soon. I also have three projects roaming around and I have made progress on two of them – I think that’s good. Tiny, fun, fruitful, bouncing bits of energy.
So, I decided to stick with my poetry class. This could be scary or not scary at all. I think it is my perception.
This is when a writer asks, “What is it you really want to say?” What I really want to say, truly I can’t say here. What that is? You can ask me later.
I met up with one of my best friends for 20-years out-of-the-blue yesterday – Sarah’s style. Absolutely wonderful to see her. So great to think of our history, our friendship, and how much I truly adore her.
Hmm . . . I am having a bit of survivor’s guilt I think. Yet – I work hard every day and yet fuck-ups happen.
There is this young girl that follows my blog, and she isn’t doing well. She is having to deal with too much at her age. It’s like I want to press rewind, let’s slowly step backward and see where and what we can do. Reverse the train before it truly derails. She can do it. I know she can. That strength is there. Focus. Settle.
Personally, I think everyone should go to Minnesota, and I feel extremely fortunate that I was born in a particular space, proximity, and time to the University of Minnesota. That I was well enough for years, giving and allowing for the time it took to map the human genome and finally finding the location for the CF gene in 1989. I remember my doctor was ecstatic trying to explain to me how I should be as well.
Then when I started to need real antibiotics, heavy duty ones, that they (well especially one), was available and came out 1-2 years prior.
That I recognized at the age of five or six that in order to survive, I needed to exercise. That this would be necessary. That while going to the clinic over the years, and when I used to see kids in the clinic, chest rounded, skinny arms and legs – I mean legs as thin as their arms, and bloated tummies, I didn’t want to be that. They were just so thin . . . Perhaps, it was vanity or maybe it was fear, probably both.
While thinking about all of this just briefly, I made a decision that this year was to move forward. One strong step in front of the other – and that’s it.
I will step into fear and I will step into strength.
I will also fuck up. I mean in this elaborate orchestration of treatments and medications, I am not perfect.
I forget to bring a medication here and there. I take most of my vitamins daily. The ones I chose not to, are ones I added myself.
Sometimes I have forgotten to recharge my rechargeable air compressor and I sometimes my medication is cut short, just like 5-minutes but it is 5 minutes. I truly have only done this three times, but it could always happen.
I reuse some of my neb cups (I call them particles, there is a history to that), more than one day. I have particles coming out of my ears and the rotation is nuts.
Beyond that, I am pretty on-par.I do about 97% of what I am supposed to do, in an exact way, order, and amount that I am supposed to do them. But, I am not perfect. I am human, and that fudge-factor could add-up in the future, but I try my BEST.
I experiment and I don’t tell my doctors until I have more results. As doctor Warwick used to say, “The thing about patients with CF is that they’re good scientists,” he said. “They always experiment.” – “The Bell Curve”
For better or worse, I will continue to experiment.
I will step into fear and I will step into strength.
Mary Oliver died the other day. One of my all-time favorite poets. She made words easy on the eyes, they found their way inside and settled warmly and they became friends within you – something to aspire to.
Three Things To Remember
As long as you’re dancing, you can
break the rules.
Sometimes breaking the rules is just
extending the rules.
Sometimes there are no rules.
– Mary Oliver
Article with Dr. Warwick highlighted: https://www.newyorker.com/magazine/2004/12/06/the-bell-curve