Article

Out on a Vulnerable Limb (A Conversation with Me)

the first duty of love is to listen - Paul Tillich

This quote has stayed with me since I was a teen. I hope it stays with you.

 

Here is my truth: I have been in bed, in pain, suffering for two days.

Here is my truth that is easy for you to hear because it doesn’t push buttons or point fingers: I have been in bed, in pain, suffering for two days.

Let me say that one more time for the cheap seats in the back: I have been in bed, in pain, suffering for two days.

And I say this knowing, with confidence, that the majority of you have paused and taken a moment to empathize with my life living with two chronic, degenerative, incurable diseases, because you are my friends, my fam, my circle of like-minded individuals, but even for those of you who don’t know me I am confident you are compassionately reading (thank you).

Now, humor me.

Imagine if I stepped out on that limb, vulnerable and isolated, and said the same thing, “I have been in bed, in pain, suffering for two days,” knowing I wasn’t alone, knowing full well thousands upon thousands of people are in my same situation and some of those people need me to be their voice and so I spoke my truth with the intention to raise awareness for a CURE to my diseases, but was met with this:

“What exactly did you do to get yourself in that position?”
“As a healthy person, I can see both sides to this argument. I mean, it’s understandable how your admission of suffering makes other people look bad, but isn’t it selfish to say that you suffer and we don’t?”
“Is it really suffering? I mean you have a bed when so many people suffer and they don’t even have a bed.”
“Buck up, buttercup. Pull yourself up by your bootstraps.”
“Always trying to be a victim.”
“What is your agenda?”
“Hey, don’t vilify the well! We can’t help that YOU are sick.”
“People like you give modern medicine a bad name.”
“Just because you aren’t having a good time doesn’t mean you need to ruin it for the rest of us.”
“Is it really that bad?”
“Clearly, you’re exaggerating for attention.”
“You aren’t doing enough.”
“Your lifestyle choices contribute to your suffering, therefore you shouldn’t force your suffering on us.”
“Stop whining, at least it isn’t cancer. You won’t die.”
“You should be grateful. Use your suffering to make better art and write better stories.”
“You could have said you were suffering in a different way to make it more easy for us to understand. How were we supposed to know you were suffering if you didn’t communicate with us more clearly? We would have helped you if we knew. We aren’t mind readers.”
“Pain is subjective.”

We as a culture are in a period of great awakening and have the opportunity to acknowledge, reconcile, change and evolve. There are so many brave men and women out there ON THE VULNERABLE LIMB doing their best, speaking their truth and changing the world so even if you don’t understand (yet) the significance of what they’re doing and saying and the truth they are living out loud for MILLIONS of people that change will still happen eventually and that is amazing.

WAIT, before you say anything think about it: someone stepping out on the vulnerable limb even before YOU are ready is amazing, full stop, so when you see someone’s truth do me a favor and stop to simply listen.

There are some moments when you don’t have to be a vigilante and can trust that if there is malicious intent that truth will also come to light, because those of us who identify with the people out on the vulnerable limb are listening. We are listening to them and we are also listening to you and learning, every single day, how very much alone we are and truly how much work needs to be done for us to feel safe.

I am so very grateful to all people of color, minorities and those who have survived sexual abuse/harassment volunteering their safety and time through out history to awaken the world to evil abuse of power and domination.

The daily education of the privileged is so exhausting, as so many trailblazing pioneers of justice and equality already know, but y’all, the blowback, the knee-jerk reactions, the judgment, the hyper defensiveness, the white-knuckle hold on comfortable ignorance NEEDS TO END. They do this work so we can do our work.

So I am stepping out on the vulnerable limb, on this tiny platform I own who’s ethos is about communication to say those who step out on that vulnerable limb knowing they will be attacked, their character will be assassinated, do so because their integrity does not allow them to remain silent, the safety of other’s does not allow them to remain silent and your comfort does not justify their silence.

This conversation isn’t just for the next generation, for my kids, for our teens and your kids to solve, apply and implement. This is a now issue, this was a then issue, this needs to be a part of the past.

I learned a long time ago when you want someone to listen make it about you, so this conversation is about me, the Aziz conversation is about me, “Grab um by the pussy” is about me, #yesallwomen is about me, #metoo is about me, but really it is about us.

I didn’t learn how to “properly” say no well enough for “people to understand me” until I was 30.

Please, just listen.
Please, just listen.
Please, just listen and do better and I promise to do the same for you.

Thank you.

 

 
 

Article

Fighting Fear with Kindness

conversations with hank

 

Hank: (walking into my office) Hey, mom.

Me: (staring at a blank word document, a blinking curser, taking long, deep breaths) Hey, buddy.

Hank: Whatcha doing?

Me: Thinking.

Hank: About what?

Me: I am thinking about American politics. I am seething about power and it’s ability to corrupt and disrespect and the systemic blindness that has gone on far too long or the overall ignorance of people’s personal space and safty.  I am thinking about the state of the oceans and how they are full of plastic. How fish and sea life are eating plastic and therefore we are eating plastic when we eat them and how soon, unless we all stop using unnecessary plastic which we can do, we are all capable of this conservation, there will be nothing in this world untouched by plastic and that makes me so tense with worry that it is hard to breathe. I am thinking about the state of my career and my idea of success. About how I philosophically claim to be satisfied and 99% of my waking moments I am, but right now I am not, I crave more and want a traditional idea of success and achievement and that also is making my chest tight with stress because in order to break out of my simple comfortable box I’d have a laundry list of more and more things I have to give and I have nothing left to give. I don’t want to take anymore time away from you and Molly and your Pai (dad) and my poor health requires so much already. I know I am giving all that I am able and comfortable to give and therefore I need to be satisfied and for this brief moment I am not and so I am spiraling. I am also thinking about cookies

Hank: Cookies?

Me: (nodding) And how I want to eat all the cookies the world has on offer, because eating cookies when I am spiraling makes me feel better, but cookies are packaged in plastic and those plastics, some of which are not recyclable or reusable, will end up in the an ocean and wash up on a beach I will never meet so I am obviously thinking in a continuous loop of worry and fear! BUT I am also calmly telling myself, on top of all the spiraling panic, that I am okay, that I am doing my best and that my best is enough. I don’t believe myself yet, but I keep reminding myself over top of all the noise my irrational brain is making that I am okay. That I have the ability to get the recipes for every cookie in the world and am able to bake those cookies and avoid as much plastics as possible. I am telling myself that what work I publish and share is enough for now and someday someone else will want to assist me in publishing my books, but until then my job is to remove stories from my brain and write them down, print and archive them and that is a huge success in addition to being a wife, a mother and a friend. I am spiraling, but at the same time I am treating myself carefully and calmly, like I would treat you if you were in crisis and so I know if I comfort myself eventually I will be comforted and reassured that I am doing my best and my best is enough. I am listening to the rain, I am breathing intentionally and now I am talking to you and telling you all this so you know that everyone feels out of control, no matter who you are, no matter how put together and responsible you appear and it is okay as long as you treat yourself as you would a child that needs caring for or a friend who needs an ear to listen. That is what I am thinking about, Hank.

Hank: I feel like that sometimes. My thoughts are too much.

Me: When you are overwhelmed treat yourself like you your treat your little sister. You would never tell Molly to toughen up, be a man, or to stop feeling like an idiot. You would never call Molly stupid or fraca (weak) if she was in crisis. A person is brave if they face their fears and not ignore them or stuff them away.  Try and silence fear and it will always come back and haunt you.

Hank: I would never be mean to my sister. She is still learning.

Me: And so are you and so am I. People never stop learning and you have to be polite to yourself when you’re learning something new.

Hank:

Me: I will be okay because I have learned that there is nothing wrong with sad moments, or moments of worry and if I treat myself the way I would treat my children then no matter how panicked I feel in the moment I will eventually feel better and if I don’t feel better then I always have you and your Pai (dad) and Molly to turn to for comfort and help. We all have irrational moments where fear wants to tell us we are not okay. You are never alone in that, Hank. Regardless of people’s reactions or misguided ideas everyone has moments of fear. Today, I am punching fear in the face by being kind to myself. Fear doesn’t want that, it wants me to flip out, but I won’t let fear win. I can accomplish nothing in a panic. (deep breath) So, I am going to sit here until I calm down and then I will go into the kitchen and have one, single delicious cookie and a nice, cold glass of milk.

Hank: Do you want me to bring you a cookie and some milk?

Me: No, thank you. I am not ready yet.

Hank: Okay mom, let me know if you need me.

Me: (smiling) Will do, thank you for listening.

Hank: (leaving my office)

Me: (eyes moving away from the blinking curser, shutting my computer to look out at the gray winter rain while taking long, soothing deep breaths)

Article

Doctor’s Visit

 

Hank: (walking out of the ER on our way home, deep sigh)

Me: (putting on my sunglasses) You’re thinking rather loudly.

Hank: I am happy the doctors said I am fine…

Me: But?

Hank: But now I feel like I didn’t need to go to the doctor. I wasn’t sick.

Me: Were you suffering?

Hank: Yes.

Me: Were you in pain?

Hank: Yes.

Me: To the point of tears?

Hank: Yes.

Me: Did you know what was wrong with you?

Hank: No.

Me: Then you go to the doctor. Ponte Final (Period)!

Hank: (shoulders slumped)

Me: I don’t think you realized that a major part, top of the Pro/Con List, of why I chose to immigrate to Portugal was for healthcare.

Hank: Really?

Me: Yup. Sure the food, climate, access to the sea and therefore sea food, the culture, language acquisition, the fact that we had an apartment here, family and friends made the decision much easier, but really it was for this, for today, for the day you called me from school crying and I didn’t have to give taking you to the doctor a second thought because I have already paid for the service and can make sure what ails your isn’t more just than growing-pains.

Hank:

Me: In America, in my experience, a doctor’s visit, not an ER visit, would cost anywhere between $60-$120.

Hank: WHAT?!

Me: (nodding) America has a different system of healthcare. In Portugal we all pay a solidarity tax based on our income that gives us access to our family doctor at the health center and ER as well as hospital and specialist care. When I go to the health center or ER I pay €5 out-of-pocket in addition to what I have already paid with my taxes. When you or Molly go to the health center or ER you pay nothing out-of-pocket until you are 18 years old.

Hank: I wouldn’t have wanted to go to the doctor if I knew it cost money.

Me: The doctor ALWAYS costs money, don’t be confused by what I’ve said, there is no such thing as FREE heath care. Your papa and I and allllllll the taxpaying citizens of Portugal have already paid for the health care provided and if we are not satisfied with the national health care system paid for by our tax dollars we can choose to pay to see a doctor through the private health service.

Hank: And you’ve done that for you doenças (diseases). You’ve gone to private clinics.

Me: Yes, I have paid for second and third opinions as well as complimentary care such as physical therapy, acupuncture, etc and when I don’t want to wait to see a specialist through the national health care services I have gone to see them privately. What I have learned is the level of care is the same at both public and private clinics and the same doctors that work at the public hospitals and clinics work at the private hospitals and clinics, too.

Hank: So why do people use the public hospitals and clinics?

Me: Preference or the doctor they’d prefer to work with doesn’t work at their assigned hospital or health center or as I have said, second opinions or because they want to be seen faster. Wait time is always based on your priority and urgency.

Hank: So America is like all private and no public?

Me: Correct.

Hank: So they don’t have options?

Me: They have many options, but all the options cost money and adds the burden of financial stress on top of being sick.

Hank: So if we lived in America and today happened I would feel bad when the doctor did all the exams and found out that my stomach pain was not appendicitis or a bladder infection, because I would have spent money for nothing.

Me: I am not telling you how to feel, but I would do everything in my power to not lay financial burden or guilt on you for needing to see a doctor.

Hank: I guess, I mean, that is exactly how I would feel even if you told me not to. I would feel bad for there being nothing wrong with me.

Me: But there was something wrong, Hank, and the doctors and I were so happy to tell you that you weren’t in dire straits and get the advice we needed for you to feel better faster. That was worth leaving school early, going to the health center to find out they were full for the day and being sent to the ER to see a doctor there. The whole thing took 3 hours more or less and the knowledge and piece of mind we now have is priceless.

Hank: And cost nothing… I mean, cost what we’ve already paid for it so we might as well go.

Me: Exactly, use it or lose it. Imagine how upset the doctors at the ER would be if you DID have appendicitis and we waited until it was a life or death emergency for you to go see them for help. They would be so angry, because there is no reason to suffer and wait. So much of Portuguese healthcare is focused on preventive medicine, making sure to handle an illness before it becomes an emergency. If something ails you it is your job to go to the health center or the ER so they can do their job making you better before you have a health crisis.

Hank: I don’t know what I would do if I lived in America and kinda felt sick, but not bad like it was an emergency.

Me: You would still go see your family doctor. There is a whole other area to this conversation about complicated levels of insurance, personal responsibility, cost and coverage that I am going to save for when you’re older.  Regardless I feel the American system, no matter your access to care, puts too much financial stress on the sick and/or their caretakers, so yah… more for another day. What is important for today is this:  I love that I grew up American. America gave me so much and I would never trade my first 30 years there, but my life-goals, my family and my health require a different heath care option and I am grateful I was able to immigrate to a country that recognizes access to affordable heath care as a humanitarian right. I find the system in Portugal infinitely less stressful than the one I had growing up with poor health and limited access to doctors and insurance. That system made me strong willed and a fighter, but ultimately let me down.

Hank: I know I’m ten and I don’t want to understand adult problems yet, but I think I understand why you chose Portugal, especially after today.

Me: Thank you for taking the time to ask questions and listen and I want to remind you immigrating here was MY best choice. I want you to stay open minded enough to know my best choices may not be the best choice for others or your best choices in the future.

Hank: Okay.

Me: (throwing my arm around his shoulders, almost home) And thank you for critically listening to a complicated issue when you aren’t feeling well.

Hank: I am feeling much better knowing I’m okay and that I will always be okay as long as I listen to myself and get help when I have questions.

Me: No one ever…

Hank: I know… No one ever called me dumb, not one day, but that is because of you and papa teaching me things.

Me: Thank you, Hank, but our lessons would mean nothing if you weren’t an open-minded listener. Always remember to compassionately listen and learn from others, not just your papa and I.

Hank: (climbing the stairs to our building faster than me, turning back) Now all I need is a hot chocolate and some rest before my sister gets home and I want to play with her and make her laugh. She has the best laugh, doesn’t she?

Me: She does indeed. Molly’s laugh is like music and fills the whole house.

Hank: Her laugh will make me even more feeling better. Laughter is medicine.

Me: (fishing out my keys) True story.