A letter

 As a woman in America I am acutely aware of diet and exercise. I have been dieted and exercised within an inch of my life. Telling me to change my diet and lifestyle is the laziest treatment advice. I am literally a patient in the Liver & Digestive disorders clinic.  If you bother to look at my chart you would see multiple GI diagnoses that typically cause life threatening weight loss. Also, the very first subject we covered in this appointment is my feeding tube.  I have been encourage to diet since I was in grade school. Do you think 30 years of dieting has not been enough?  Maybe if you say it again I'll understand.  And again. And again.

You tell me after the fact that the Fibroscan can't be trusted because of my BMI.  The last time I checked BMI is not a measure of the distance between by skin and my liver capsule.  Are you afraid to say the word fat?  Is it because you automatically think fat is bad? 

You did nothing to prepare for my appointment.  Literally nothing.  

The part I found especially degrading was the RN tasked with bringing me my discharge papers who interrupted the two residents explaining the research study you all were so desperate to enroll me in.  Is it a requirement that she read the dietary advice aloud to me?  Do you require that for your smaller patients? Or is it that, despite overwhelming evidence to the contrary, your entire practice is based on the idea that fatness comes from being lazy and willfully ignorant of the dietary precepts that are blasted out of every media source we encounter every day of our lives?  

Your staff drips exhaustion as they repeat the same trite phrases about lifestyle changes.  The resident who told me how strong I was and patted my knee in a patronizing way as she told me to try all the things that I've already done.  You know, those things that are listed in my chart? Are you guys allergic to reading the chart or something? 

Between

You think of breathing as constant. Your heartbeat is always ongoing. But there is 

space

between each breath. From beat to beat. I am living in the silence between. 

In Memory of Norma Jean Ashcraft

1 Corinthians 13

New International Version

1 If I speak in the tongues of men or of angels, but do not have love, I am only a resounding gong or a clanging cymbal. 

2 If I have the gift of prophecy and can fathom all mysteries and all knowledge, and if I have a faith that can move mountains, but do not have love, I am nothing. 

3 If I give all I possess to the poor and give over my body to hardship that I may boast, but do not have love, I gain nothing.

These verses are a part of Corinthians 13 we don't hear that often. I'm sure all of us have been to a wedding with the reading "love is patient, love is kind" etc. This passage precedes those verses. What we often hear as an admonition to newlyweds is part of a greater missive generally accepted to have been written about unconditional love. 

What I hold in my heart from day to day is what Nanny taught me about love. Her life, and all our lives, was not and are not easy. We face a world of challenges every day. But in that same world exist all the beautiful variations of art, music, language, food, creativity and love. 

Nanny taught me how to love in a world that doesn't always make sense. How to love life fully and recklessly. I treasure the lessons she gave about love. And because of her I also love the person she taught me to be. 

I believe that if she saw the world as it is today she would remind us to live carefully but love recklessly. Thank you all for being here today and a special thank you to Nanny for loving us. 

Norma Jean Ashcraft

October 24, 1934 - February 19th, 2020

Palliative Self Care

NOTE: This was written as a spoken word piece. I am not talking about suicide, just the natural process of living and dying with chronic illness. 

*******

When you are not ready to die but it is too painful to live then it is time to engage in palliative self care. It is time to acknowledge that you are living in pain. Being of this world is hard. It is, quite literally, the hardest and longest thing you will ever do. You will never work so hard on anything as you do on living. 

The pain you feel is real. The injury is real. 

Let go of the facade for a while. You don't have to keep pretending that you are fine. I know I'm not fine. 

So, what do you do?

Being this sick is a full time job. I jokingly refer to myself as a professional patient but it's really more true thanl, anything else. Every moment of my day, waking or sleeping, is permeated with medical procedures and equipment. I have 3-5 appointments or interactions with medical professionals in any given week. 

In order to survive with complex chronic illness you have to become an expert in your own body. You become a diagnostician, your own nurse, your own dietitian. If you are lucky you are able to call on actual professionals to consult. My medical team has expanded to include a dozen providers and paraprofessionals too numerous to count. 

And still there is but one ultimate expert at living in my faulty meat suit. I have been traveling in this body for 40 years. I know every detail of its aches and pains. I know the depth of feeling carried in it's neurotransmitters and electrical impulses. I have come to trust my own knowledge above that of any doctor. I will accept and utilize their knowledge but they do not decide for me. 

I am not woke...

Written December 2020

I am not woke. I am simply tired. I am tired of people dying. I am tired of it being done in my name, paid for by my tax dollars and sanctioned by the government officials who claim to represent me.

This is not a new problem. This is the same problem with a hastily made disguise thinly veiling the state sanctioned white supremacy. In our names the government and their out of control police force are trampling our siblings. 

Your people were no longer enslaved? Then they will pipeline you directly from poverty to prison. Every disadvantage will be yours. Lack of resources, culturally accepted tropes of the hardened will of the down trodden, massive bias against you in everything from legal proceedings to housing, you will have it all.

I am not woke. But I am very, very tired. When you fight back, you are killed. I cannot even imagine how tired you must be. 

The more things change...

...the more they stay the same.

I've finally gotten to a point where my pancreatitis isn't flaring all the time. Wound up discontinuing two medications and starting two new ones. One for psych and one for blood sugar control. Because of this progress I've been able to continue in the bariatric program I started earlier this year.

That said, I'm in this in between space with my chronic illnesses. They are just debilitating enough that I can't work but not quite so debilitating that I've been able to win my disability claim. I received my first denial today. We will, of course, appeal.

The new psych med that I started, Seroquel, has been sufficiently stabilizing my mood but it has a number of negative side effects including weight gain. I am thinking my next steps will involve a total overhaul of my psych cocktail. It's only working for part of my life and I really need a holistic approach if I'm going to take full advantage of the weight loss surgery.