cystic fibrosis

Peculiarity

I have been reading a fair amount this winter break from school, but I think my neurons have been a bit fried to write all that much.

I have been sleeping a lot. But I have been getting the best sleep I think ever have. My educated guess is because my body is functioning with less resistance or just allowed to rest.

I feel like this medication is the tool, or The three tools that my body has been working without all these years. Now that the tools are in place, my engine is running smoother, the gears are turning, and my body is working almost automatically.  It is saying, “You rest, step aside, let us take over.” 

I have never had this before. I have always had to make the machine run by me getting up and making the machine work. Almost mind first then body.

I have gained some weight, which they said would happen. I think it’s part of the whole less energy needed to survive thing, and the calories just hang on.

I feel stronger and I think I am. I have been able to do more exercise reps and sets than I normally do, and overall the exercises are easier. And still –  I am not coughing.

Coughing overtime feels like you are getting pushed around and almost punched from the inside. It’s terrible.

I am not exactly sure where my lung capacity is at. I am also being honest with myself that it may show improvement, or it may not. Or it may take a long time to heal. But, physically I can almost say I feel as if I am almost reversing in age, maybe.

However, I had been aging at an accelerated rate for quite some time compared to people in my age group.

What do I know? That I am sleeping really well. I am not coughing and I thankful beyond what I can say or do or be.

One of my respiratory techs in Minnesota is married to a CFer, and he is post transplant, doing well. She said, “You don’t realize how much medical paraphernalia you have and the room and space and time it all takes until you don’t have to do it.”

I write this wondering . . .

Post transplant people still have to do treatments but usually it decreased in size and time.

She said this delicately knowing I was sitting the hospital, doing my treatments and junk, but sipping my latte along the way.

I recently finished listening to Becoming by Michelle Obama in my car. I am moving onto one of Obama’s books. These two can make you think you can change the world.

I am taking a memoir class this semester. Should be interesting. I just got my book list. You can tell a lot about a class by the book list.

Why Be Happy When You Can Be Normal? – Jeanette Winterson

Situation & the Story – Vivian Gornick

This Boy’s Life – Tobias Wolff

Fierce Attachments – Vivian Gornick, again

Year of Magical Thinking – Joan Didion. I have read this before. Don’t be fooled, this book can ground you and change you.

See the cover – the letters J-O-H-N are in blue, faintly – it’s a dedication to her husband and her love for him. That’s one part of the book. There is more.

Truth & Beauty – Ann Patchett

Moveable Feast – Hemingway. Not sure about this one yet.

All Souls: Family Story from Southie – Michael MacDonald

Between the World & Me – Ta-Nehisi Coates

Crossing – Samar Yazbek

Argonauts – Maggie Nelson

 

I listened to this interesting podcast the other day. It is good. Check it out.

https://podcasts.apple.com/us/podcast/revisionist-history/id1119389968?i=1000451855699

Life is quite peculiar. Thank you, Life, for being so.

Much love.

 

 

cystic fibrosis

Nicole

“Have you ever had to drink this stuff?” Nicole asked.

“No,” shaking my head.

She was hanging onto the jug of Golightly making a sideways face, her eyebrows lifted.

Me, I was on my way to work at medical records at the U of M, passing through the pharmacy.

Nicole and I met when she was nineteen and I was twenty-two. I worked at Children’s Hospital in Minneapolis at the coffee place and the atrium around the corner was having a CF round table event. My nurse, Mary Jo McCracken, was one of the attendees. I didn’t go to the CF round table, a bit too much for me. But afterward, Mary Jo introduced Nicole to me.

Note: this is before cross-contamination was known. Then, CFers could talk freely and engage with one another.

She often went by Nikki, but I called her Nicole. I tend to use full names, rather than the shorter version. To me, they sound nicer, rounder, and more distinct.

Nicole was petite even wearing jean overalls. Shorter than me, pale with a touch of rosy red cheeks. Fine blond hair and perked up the moment you said her name.

A few months went by, I couldn’t tell you how many to be exact, and I walked into my math course at the U of M. I step down a few rows and looked to my left and about midway through sat Nicole. I didn’t notice her at first glance, but then as I got closer I said, “Hey” and she smiled and said “Hey” in response. I sat down with a seat between us and we were friends from that moment on.

The class was a few floors below ground level, two-three floors. I remember as we climbed, Nicole got a little winded as it was harder to talk as we climbed. So, we slowed it down a half-pace, just enough to continue our conversation.

We saw each other on campus – all across campus. We met at Breuggers, met for coffee, sometimes planned and sometimes not. I remember one such morning it was 7am as I walked on in, and she was already standing in line. I was off to radiology rotations and she was off to class shortly. She was working on getting her child psychology BA.

I met her husband, Mike, at the annual CF Conference. He was a very sweet guy, gentle, and could tell he cared about Nicole quite a bit. We met at the CF climb; she couldn’t climb but Mike did for her. I drove over to her place and exchanged Christmas gifts.

We talked and caught up – every time we made each other laugh. We laughed a lot. She told me one time, “Whenever I see you, you cheer me up.”

She never said too much about how she felt, but one time she had bruises all over and she said they were regulating her Vitamin K. One time at the coffee shop, her hair seemed finer and limper, and she was thinner. Her upper arms were about as thin as her forearms.

“You look good,” she would say.

“You do too. How you been feeling?”  Sometimes she would tilt her head slightly sideways and make a half-grin.

One day, I received a gift from her in the mail. It was a gift certificate to try out her chiropractor. She often spoke about how it made her feel so much better and that I should try it, like gleefully.

I don’t like chiropractors, or I should say they scare me. But, she was so excited to give me this wanting to see if I liked it as much as her or felt relief – I just responded “Thank you so much,” and for sure I would try them out.

This is classic Minnesotan. You never want to make someone feel bad, ever. I mean, who am I to do that? I would be an egotistical asshole. I don’t know anything more than anyone else and I should always be grateful and say thank you. It doesn’t matter if I don’t like chiropractors or not, she spent money on this presumably and really wanted me to try it, sharing her good wealth.

It is the silliest thing, but I almost didn’t want to run into her on campus afraid she would ask me. She was my friend, I couldn’t lie. I could only slightly bend the situation. I eventually went for an intro appointment, and there was a part two and I never returned. I didn’t want them cracking anything. I felt fine for the most part.

She was hospitalized during my crazy, busy radiology rotations but she never told me. She told me after but didn’t want to worry me. I knew she was struggling more but she didn’t want to vocalize it. I reached out to her more, but it became harder which is never a good sign.

Then, I graduated from radiology school and was determined to move out-of-state. I did not want to her tell her I was moving. Also, I was healthier than she was and even if no one said it, we both knew it. That’s the most difficult thing being friends with someone with the same condition, it’s a mirror. Then, a comparison of who is healthier and who isn’t. Rate your illness. The intention is never poor, or mean, or malicious, it is just there. The truth can’t be hidden.

I eventually moved and it became harder to stay in contact. Mostly, I didn’t want to do “This is what I am doing” bullshit. I hate that bullshit. What works for me, doesn’t necessarily work for you. She was good with her route, I just went this route. Yet, I was taking a leap and it was a big one; it couldn’t be ignored.

When we did talk, I really wanted to know how she was doing and I got a lot of “Fines,” or “I am doing alright.” She never expanded.

I did not want to go on about Boston and blah… blah….blah. We talked about school and how she graduated and was working with children, and this is what she always wanted to do.

Then it got quiet for a while. Whenever someone has a chronic condition and they get quite – it isn’t good. Things are happening. Sometimes they can’t speak about them mentally and/or physically. But, it is never good and whenever you have a friend, and a friend especially with a chronic condition “get quiet,” reach out more.

I didn’t because I didn’t want to go on about what I was doing, and it was just life stuff but it was in a new place and new experiences. I was busy, and I was also getting more the same “I am fine.” And to be honest, I do not think I told her directly that I like women – and I was afraid of that as well. I never talked about men or women, it was just off the table. I didn’t know her beliefs and I didn’t know how she would react.

I get an email from her husband some months later. He and Nicole’s family created a memorial fund in the honor of Nicole’s passing.

Reading those words felt like a ghost passed through me. It felt like air-filled my belly. I became weak, and once I started registering, shaky.

I spoke to Mike on the phone. He thought I knew. He said she had passed three months prior. She had not been doing well for a while. She got an infection and was admitted, ICU, and within two weeks her system couldn’t do it.

Nicole tried, she tried really hard. I would have loved to have seen her experience what’s happening now. She passed at the age of 27. Too many years between now and then.

I don’t know exactly why I have been thinking of her – could be the holidays, Golightly, or just the fact we got each other the moment we said, “Hey.” Or maybe her spirit is around saying, “You lucky shit,” or more than likely she would say, “I am happy for you. Now go get’em.” You never know.

We laughed a lot, like we laughed all the time. Then we would cough. I think it is the laughing that I remember the most and the fact she was shorter than me.

She was a great friend.

Much love.

 

 

 

 

 

cystic fibrosis

Carry A. Nation

Today the name Carrie Nation came to mind; aka. Carry Nation or Carry A. Nation.

She was a robust woman, standing about six-feet, born in the mid-1800s that was a stern believer in prohibition and the temperance movement.

She believed that alcohol tore families and societies apart – as it did her own. She married a young man post the civil war named Charles Gloyd that unbeknownst to her, was a severe alcoholic. He was a functional alcoholic until he wasn’t. He died at the age of 29 while leaving Carry with her young child.

She remarried later to a preacher and lawyer named, David Nation in Kansas. There she got involved with the Women’s Christian Temperance Union (WTCU) – they who supported her beliefs regarding anti-alcoholism. Nation also supported women’s rights and the women’s suffrage movement, and she did not believe in wearing corsets as the structure was harmful to women’s bodies.

In 1880, Kansas was the first state to adopt a constitutional ban on selling alcohol; however, many saloons remained open and sold alcohol readily. Some of the women began singing and basically loitering around saloons and liquor stores singing hymns and preaching the ill-ways of alcohol.

Nation felt she needed to do something more. It is said that she got a call from God and encouragement from her husband. She then picked-up a hatchet, walked into the town’s saloon, and began breaking and smashing bottles of liquor while singing and praying.

The saloon townsmen often did not know what to do – they either backed away while she smashed the bottles and other times she was assaulted and brought to jail.

As soon as she could post bail, or her supporters posted bail for her, it didn’t take long for her to go into another saloon with her hatchet and smash up more bottles.

Carry started to travel, and speak about her temperance cause. Her reputation spread and soon saloons hung a sign that said: “All Nation’s are welcome but Carrie.” She was arrested roughly 30 times between 1900-1910 for her “hatchetations.” One time her bail amount was an equivalent of $15,000 today.

She soon got the idea to sell miniature souvenir hatchets and buttons to help fund her crusade as well as pay her jail-fines.

At one point, her husband could not support her violent ways and eventually distanced himself from her.

Carry went on to publish a biweekly newsletter called The Smasher’s Mail, The Hatchet newspaper, and wrote an autobiography.

Later in life after giving up her hatchetations – she bought a home called the “Hatchet Home” to help women who have fled their homes because of their alcoholic husbands.

In 1911, Nation collapsed while giving a speech and passed at the age of 64. She never saw a nationwide ban on alcohol as that didn’t take place until 1920 – eventually abolished in 1933. Nor that women’s vote until 1920.

“The Woman’s Christian Temperance Union later erected a stone inscribed “Faithful to the Cause of Prohibition, She Hath Done What She Could” and the name “Carry A. Nation”.

One-story frame house with wraparound front porch

Carry Nation Home in Medicine Lodge, Kansas

 “Her home in Medicine Lodge, Kansas, the Carrie Nation House, was bought by the Woman’s Christian Temperance Union in the 1950s and was declared a U.S. National Historic Landmark in 1976.” This was the first home for what is known as “Battered women’s shelters” today.”

It is also known she visited prisoners and sewed clothing for women, and prepare meals for people on the holidays.

Today her souvenir hatchets, buttons, and signs may still be found. Her folklore lives on in films and one bar in California is called “Carry’s Nations,” and in Massachusetts “Carrie Nation.”

Whenever I go into an antique store or a flea market, my eyes look around to see if I spot an old hatchet or button. I think of this woman marching into a liquor store or saloon, men stepping back while they watch her swing her hatchet, smash bottles, singing and praying.

It is kind of comical, yet I can admire her mission especially regarding the fight for women’s rights and the protection of women and their children.

I mean who would want to mess with this woman –

 

Work Cited:

http://www.history.com/this-day-in-history/carry-nation-smashes-bar

en.wikipedia.org/wiki/Carrie_Nation#%22Hatchetations%22

Kansas Historical Society

 

 

cystic fibrosis

Happy New Year’s!

I love food. I think food and drinking coffee are my favorite past times.

I had my first colonoscopy with success! “Normal” – such a great word. My goal was to get it done by the end of the year. I squeaked it in.

I worked hard on my prep. CFers have the extended, long prep; 2-3 day prep, mag citrate, one-gallon of liquid, etc. prep.

Throughout my sugars held steady for the most part. That was one of my greatest concerns. I checked my sugars daily a few times to make sure.

I stopped eating solids Friday evening to make sure I did not have to redo the procedure and then all hopes everything would be okay.

I did not technically have to stop eating solids completely until the day before, but I knew all of it would be easier while having a much higher success rate if I stopped early.

I am so happy.

I did have many Tootsie roll pops on Saturday, the crunch-factor I think. And then have Werther’s Original caramel candies in between my prep helped a lot. I ate a lot of them too.

The CF Foundation recommends CFers to screen at age 40. It took me two years to get it done. They suggest it, rather push-it because our bodies are a mess.

However, when the nurse listened to my lungs I asked if she had heard any crackles or wheezes, not a one. The colon doc had said he has already seen improvement in patients since Trikafta came out.

I am not coughing. No, none, zilch, crud in my lungs. I am breathing deeper. Everything seems easier. I am having less resistance and less exhaustion. I am picking up the pace.

I just look around the room and am unbelievably thankful for all of this.

So now what – magic.

My friend sent me this little magic. It is to begin my vision board, which I have been meaning to do –

Then, I look on Instagram three days ago and my friend Melissa Wells published her 2020 Vision Board Clip Art Book. A tiny blip – her book has “over 150 images and 200 words so that you can cut and paste into a powerful and effective vision board. It is like having 10 magazines into one book.” I ordered it right away.

Mel is a friend of mine. We met a couple years ago or so. She is an artist and used to have classes on creating vision boards – to actualize your dreams. So, there you have it! I will create a vision board, finally.

Throughout this last weekend, I visualized food quite a bit. Yesterday, I preemptively picked up some food, knowing how good it would be today.

So far today I have had a Luna bar, a bagel with cream cheese from Bruegger’s, macaroni and cheese from the grocer (four-cheese macaroni), half of this large Tuscany chicken sandwich I often get at this deli as well. I then have had a slice of quiche I made, and 10 marshmallows that I heated up in the microwave. It is a simple gooey and yummy treat without a lot of sugar. I have had a couple lattes as well, nice thick and rich milk, and it is not 5pm yet.

I love food. It is joyous and as my friend, Lisa says, “a delight.”

So, for your New Year’s and mine, is to take all the goodness and hold it. Believe in it and move forward with it.

One of my New Year’s goodness is to take Chester on more car rides. I don’t walk him much anymore because he is old and he overdoes it. His back can’t take it. But, he loves car rides. So, I brought him and his sidekick in a short car ride today. He was smiling.

Much love. Thank you for always reading, listening, and being.

 

cystic fibrosis

The Road

I think I barely got by with an A this semester. I handed in a draft of my final paper a week and a half ago and had to tie-in more of the semester readings.

I knew it wasn’t grounded that much in the readings, more of a leaping-off point. Truthfully, some of the readings were poignant yet – really starting to bore me, except for the last text we read.

I think we should have done more writing in between classes to keep the conversation going. Even though one of my professors made us do this extra work between classes, a reflection of the reading material and discussion each week, it was actually quite beneficial.

Also, some of my classmates annoyed me. I am feeling the age gap more. One of my classmates quit teaching after three years. She is probably 27 or 28.

I see and hear this more and more. If the position isn’t a perfect fit, people quit. It is like the have this ideal life transfixed in their mind and unless their real-life meets their ideal, they move on. Teaching may not have been a good fit for her, but I just hear this more and more.

I am concerned that people are not understanding that at work, you have to “work.” And work actually means exactly that. You may have to do things you don’t want to do. Doing things you only want to do is called a vacation. One that you usually have to earn through work.

Then when I was growing up, alongside my friends, many of us had two jobs. We had two jobs because we were earning and saving to get a car, maybe a new car, and have a place of our own. Being able to have an apartment without roommates was gigantic and oh so worthy of that second or third job.

I did a coffee shop gig for a year and a half or so, and I had to be there at 6am for the 630am opening. I worked until 130-2pm, and then some days I went to work at my second job in the evening until like 11pm. I was in my twenties, I could do it. We were all in our twenties, we could do it.

Was all my time at my jobs glorious? That would be no. But they paid decently enough at the time, and I could live on my own and pay for everything.

Work an ambition –

My prof also said I was a little ambitious with this paper. I was tackling probably too much in a small space. I kind of knew that but it interested me. I have a habit of tackling a bit too much, but with writing, that is why there are editors. HA!

And now the biggest ambitious medication of my lifetime – Trikafta. Each of the cell correctors is ambitious – but this one really tops it.

I have only been on Trikafta for a little more than a week, and I do not know how Trikafta will translate into numbers, but I do not hear a wheeze or a crackle in my lungs.

I feel when I take a deep breath and exhale hard, it is easier and much clearer. I am having very little CF symptoms. I Am not coughing very much at all, and I feel really good. Doing everyday activities seem easier. I have truly been in shock, and it may take some time to register all of this.

This is a shift. I can start to look out and see great possibilities, once the shock settles.

I am a dreamer. I believe in the impossible. Sometimes or often, I do not the details of how to set out or execute these dreams. But, what I do know is if one asks questions and keeps asking, eventually that empty space fills. The echo quiets. I will have to spend some time writing to ground myself.

I am unbelievably thankful. Grateful beyond. I have been given a gigantic gift that I cannot even encompass.

I say thank you to everyone and everything daily – I feel so grateful just to be here. I am also aware, because this is life, that there many unknowns to come. What I always hope is that I will have the strength to endure.

Much Love.

Happy Holidays.

The Road (a draft)

The road does not give in to
its secrets. The yellow and the white,
dashed, and solid, paved by workers,
our ancestors.

The waves of black climb up the
hillside, chased downward
by chestnut-red ravines. Curved
around the bend, and flushed-up
against the sunsets’ beams.

They literally laid the ground,
paved the way. Their ambitions
pushed up and through by the winds
of their father’s and mother’s dreams.

Beyond what they could
see; maybe what they should
see – Beyond the prism of their
own individual ability.

– TW

cystic fibrosis

High-pitched snarly gear

I have been absent writing and reading; trying to wrap up my class. I still have to make some edits  . . .

My brain is quite tired tonight, so forgive me. Yet, I want to say a couple things.

I want to say that going to graduate school has been one of the best decisions of my life. It is ten, twenty times better than undergrad. Why you ask?

You get to have real intelligent conversations with your peers and almost more importantly with your professors. You learn and think about things you never even imagined.

I think one of the best things in life is learning something new. You don’t have to go to school if school is not your thing. But – learn something new for the fun of it.

Sometimes I listen to live webinars – this is more financially driven. I want to take a short 2-3 night course on the ABCs of investing. I look at the Brookline Adult Education book every season and my local community book – to see if there is a class or something I want to learn.

Learning something new just opens you up.

Which brings me to the conversation I had with my professor this week. We bounced ideas off one another for my final project, while he took notes. He created a reading list for me to start. Then he asks, “What do I want to do when I am done with my MA?”

Big question.

I can teach – which I would like to do in some capacity at some point. I have learned and realized that I like to help people with the moments and things that I found in my life the most difficult. Is that paying it forward?

Or maybe it is like, I am so appreciative of those moments and opportunities in life that I want someone else to feel that relief, feel that support.

Then he asked if I want to go further and get my Ph.D. He said, “What I know about you is that you are curious – and you love to learn.”

Yes.

I said, “The thing is a couple programs I looked at requires to take three classes the first semester – I can’t do that.” Then I started spilling.

“This is what I want to do my final project on .” I told him the term I want to call it – his eyes perked.

I took out the book Disability Rhetoric.

“This is the thing, which I shouldn’t even have to do (my prof understands this); Do you know what cystic fibrosis is?”

“I have heard of it.”

I begin to explain. “I know you know what I am talking about – just as it said here in this book – ableism/disablism; normates/non-normates.

If you are not a normate – a white, heterosexual man – many times, if not always, you have to state yourself.”

A normate by definition is – the constructed identity of those who, by way of the bodily configurations and cultural capital they assume, can step into a position of authority and wield the power it grants them” – Rosemarie Garland-Thomson.

“Rhetorically – or truly, normalcy functions not to define itself, but to mark out what it is not.”

Disability scholars have pointed out, the categories of normal and abnormal, able and disabled are invented and enforced in service of “a certain kind of society” in service of particular ideologies.”

So – you have the ideal and if you are not the ideal, often times you must state or deal with the ramifications of not being ideal.

“I am a woman. I am a homosexual. I am trans. I am queer. I am black. I am Asian . . . ” And thus then define yourself behind the normate backdrop.

“I am Tessa and I cannot take three classes the first semester because I have cystic fibrosis.” I can work to obtain a Ph.D. – but I have to do it in my own timeline.

Then I said – “Okay, people used to have 2, 3 chronic conditions – now it is 8, 10, because of science, technology, and brains combined with longevity – as we all seem to want to live longer and fuller lives . . . ” my prof then steps in and says “We will all probably have a chronic condition if not several in our lifetimes.” Thus, deemed to be disabled.

“We need to have systems and infrastructures created for non-normates.” Then, I even get more going – “But the thing is, I shouldn’t even have to say this or define myself. We are who we are and culture should accept and accommodate – but not even accommodate because I am not asking for “special accommodations” but to have or understand that people do not follow one, linear path for education or for anything.”

Then I said, “I have to questions myself at times – Is my disease legit enough to bring forth concerns? I have a big disease or big in the way that people still die all the time with this disease, which again I shouldn’t even have to rate or put myself on a tier ranking about how legit my disease is.

But, let’s say a person has arthritis, or psoriatic arthritis, fibromyalgia or another auto-immune disease? Then, their definitions get really long and the questioning and explaining are like a scroll dropping to the floor.

Then there are the disability myths – Omg. Films play these out again and again, physical and psychological:

Kill or cure.

Overcoming or Compensation – “the person with a disability overcomes their impairment through hard work or some special talent that offsets their deficiencies.

Pity or charity

Physical deformity is a sign of an internal flaw

Disability as evil – as if the character has a disability because they are mad at the world. Richard III is the best example.

Disability as Good – as in Tiny Tim. It allows for a litmus test for good and put his goodness up against other characters.

Disability as an ethical test.

Disability as Isolating – almost like a personal tragedy.

Disability as a sign of a social ill – a character regarded as less than because they may look different and then deemed as evil or bad.

There are five-six more myths.

How about we accept disabilities – which some people may not even be disabled, and allow them to live full, healthy, able lives. That may be within their own context but not a myth.

While saying all this – I have met and have been in social relationships, work relationships, just walking through life relationships where people are kind, receptive, and empathetic and know that perhaps I just need a little more time to accomplish daily if not life activities. I don’t consider myself disabled – and nor should anyone else.

However, trying to always “fit” into an able-bodied world is like jumping through hoops and over hurdles at times. I am thankful for the people in my life who have created a space to make it a bit easier.

While noting, a friend of mine who has MS is working at home. While through the applying and interviewing process she realized that her MS never had to be a part of the conversation. A great relief.

So, could I go on in school, possibly, yes? I love learning and I love being around people who are curious. My prof even said, “You could work with Jay Dolmage.” He is the author of Disability Rhetoric that book I identify so much with.

Perhaps, schools have those accommodation structures, the non-linear, non-normate, but it isn’t stated on their “how to apply” face value web page. I would need to dig and have conversations, followed by definitions.

How did this all start? Stories, Greek myths, histories, and acceptance. Written well, I would submit this work to a conference.

At some point – all of us, will have a chronic condition if, more like when, we live long enough.

words –

The churning of the crank stops,
yields its forwardness, to oil
its high-pitched snarly gear.

Switches its tracks. The steel
wheel grinds. The pitch squeaks,
you squint, taking in its notes.

Forwardness resumes when the oil
plotted properly in its grooves, and
the man with the hat says,
“It’s time to move!”

 Much love.

Work Cited: Jay Timoth Dolmage Disability Rhetoric. Syracuse University Press. 2014.

cystic fibrosis

Thank you

When you live with a life-threatening condition – and I am not even going to put that in quotations or downgrade that – you always plan and prepare for the worst. You plan and prepare to when you can’t anymore.

I save, I don’t do things I would really love to do – because getting sick and dying is real.

And you are set up to be like that, think like that – it’s ingrained in your mind and the people around you. The people that don’t ever say you can grow up and be something, because people don’t know if you will. They may be more scared than you are.

They freeze. Blinders. One day at a time. Breathe. Exhale. Next appointment. Treatment after treatment. On and on.

You don’t travel far from your house or hospital because “What if?” So you stay close while others move out of the radius.

Then, some people just freeze for years never knowing they have been. And then when you start to accumulate time, like snow falling thicker and fuller, people start to believe until something else comes up. Then you freeze again.

You do this all your life. It is cyclical almost but in an elliptical cyclical nature. Always trying to find your ground while medications, therapies, statistics keep changing – some for the good and some for the bad.

You keep on planning for the worst. Be prepared. Save. Stash. Make legal documents: a will, power of attorney, on and on. But no life insurance, can’t get life insurance.

But then – things start changing. You start to unfreeze, but you are afraid to. Still afraid but you try.

You do this please and thank you, try and make amends in this constant exchange with everyone and everything. You try and open up without falling over.

Today I got my liver function tests done and my liver is in perfect health. I can continue taking my drug.

I did yoga for an hour the other day – I coughed once. I felt like I could stretch and open up my lungs more than before. Perhaps less inflammation?

I had a dream the other night that I was in the Olympics competing in four races.

Things will keep changing.

But right now – I am not coughing. I will still prepare. That’s too far ingrained in me. But I may start to allow myself to reach further than I ever thought.

For years I have been asking for relief.

Today, I’m finally getting some.

Thank you a million times over.