MnikesaSpeaksOfGuests:Student Writer Series, Part 2!!! 😍 (Niki, Age 11)

From time to time I will have the privilege of showcasing the work of some of my students! In these wild times, I am still doing what I love—teaching! Today, I present 2 of my young students who have been working diligently this summer on the following pieces! Enjoy Parts 1 and 2!

Niki has been a prolific artist for years—which is saying a lot since he’s only 11! He loves architecture which is why he wanted to use his unique gifts to think critically and creatively 😜 about what the PERFECT COVID-ready classroom would look like. Architectural design, artist’s statement, and key are all original and below!

A COVID Architectural Design by Niki; Key Below…

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CORONAVIRUS FREE CLASSROOM 

An Architectural Design By Niki, Age 11

In COVID-19, lots of schools have switched to online learning. In many cases, the quality of schooling is poorer because online learning is difficult. In this crazy time of COVID in the USA, crazy ideas are needed. This layout is the layout of one idea for a microorganism free classroom. Though it may be expensive, it is logical and necessary to stand a chance against the tough corona-virus. 

Upon entering the COVID-19 protected classroom, you will walk through a laser-beam temperature detector. Any sign of fever, you get checked out. Next, you walk to one of the 7 isolated sink stalls. The glass door automatically opens and stays closed for 20 seconds for you to wash your hands. Then you get sprayed down with disinfectant. In groups, you proceed to walk to your desk area, surrounded by glass for particle protection. An advanced system of drones flies by cleaning, disinfecting, and refreshing the whole day. It's the end of the day. Your assigned group leaves the classroom by a different exit. On the way, they pass through multiple gates for social distancing. They sanitize their hands and leave the classroom.

A1 : DRONE PAD 1

This classroom has an advanced system of drones. Section A1 is one out of two drone landing pads. The drones have different uses: to help keep the classroom clean and healthy. There are four sanitizing drones, one trash drone, three delivery drones, and 3 camera & microphone drones. The trash drone flies around collecting any trash. The delivery drones deliver backpacks and any other objects. The sanitizing drones sanitize objects that have been touched. The camera & microphone drones fly around and spotlight the person that is speaking. (For show and tell or something). 

A2 : DRONE PAD 2

Drone Pad Two has only two types of drones. It has air drones and surveillance drones. The air drone has small air filters attached to them. They fly around to the stuffier spots in the classroom and air it out. The surveillance drones make sure that everybody is doing what they are supposed to do and make sure they are following the procedures.

B : STANDARD POD

The Standard Pod is where the student would probably be for most of the day. It has a glass wall surrounding it, and an automatic gate for entry and exit. Inside the pod are a triangular desk, a monitor (iMac), and a wireless keyboard & mouse. It also has a comfortable chair and a small locker for your backpack. The locker is lit with ultraviolet lights to kill germs. (All the lights in the classroom are, too). The glass walls can be tinted by the push of a button.

C : SOCIAL POD

The Social Pod is one of four social pods. They connect to form one pod. Each pod is surrounded by glass. The four pods are facing each other so that you could do a group activity. The pod has an iMac, a wireless keyboard & mouse, a fourth of a table, a mic, and some speakers. The speakers are strategically positioned to make it seem like the people in different pods are speaking from that direction.

D : REFRESHER

The Refresher is basically a giant air filter. It has stations to pick up masks in case yours breaks. It also has 6 hand sanitizer stations. This also functions as a storage area for school supplies. 

E : ONE-ON-ONE POD

The One-On-One pod is for one on one meetings ( student-teacher). The pod is surrounded by glass and has a mic, speaker, and computer setup. The mic and speaker allow it to seem like there is no glass at all. The pod is facing the Teacher’s Area.

F : SPRAY-DOWN POD

The Sprayer is simple. You step on the platform, it checks your temperature, and then sprays you down with sanitizer. The platform is surrounded by glass that with the press of a button can become tinted.

G : TEACHER’S AREA

The Teacher’s Area is the control area of the classroom. It has a total of 7 monitors to work and control the classroom. 3 of the screens are for the drones, 1 for controlling ac and gates, and 3 for work. Inside there is a chair, an air filter, the monitors, and also the small Drone Pad 2 is in the area.

H : TEACHER’S LOUNGE

The Teacher’s Lounge is a nice place for the teacher to relax. It has a small desk, a computer, and a  chair. On the other side of the lounge is the relaxing part. It has a TV, a lounge chair, and a table with a coffee machine.

MnikesaSpeaksOfGuests: Student Writer Series, Part 1!!! 😍 (Annika, Age 9)

From time to time I will have the privilege of showcasing the work of some of my students here on my blog! In these wild times, I am still doing what I love—teaching! Today, I present 2 of my young students who have been working diligently this summer on the following pieces! Enjoy Parts 1 and 2!

Annika has a powerful voice and has recently discovered that she LOVES poetry. She is a master baker and one day you will see her dominating on the Stanford Women’s Golf Team. Look out, world 🌍 . She’s 9 going on ready-to-take-on-everybody!

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Tournament by Annika, Age 9

“Next up we have-                                                                     

Annika Grawala.” 

No, No

NO

This can’t-

Can’t

Be happening- 

Deep breath-

Nope, not possible-

“A-annika… it's your turn?”

Is it

Too late to

Quit?

Annika.- 

Annika.-

Annika.

You

Have to play 

In one tournament-

Have to-

Have to-

Too much

Stress

Calm-

Think of your family 

Cheering you on

At home-

HOME 

Where I want to be

Right now-

Do it

Annika.

Only two hours of your life. 

I grab 

My club

Swing

One done

Only 44 more

To go...

Annika in action!

#MnikesaSpeaksofPraise

Praise.

If she were here in flesh (and not as an ancestor), Auntie would encourage me to do that. Maybe she’s still doing so...maybe that’s why this Poem-A-Day— “Praise” by Angelo Geter— dropping into my inbox at 3am felt like intercession or prophecy.

This past week I have been the sickest I have been in a very long time. That is significant for 2 reasons. First, it’s draining as hell. On top of everything else going on right now, it’s not the ideal time to Black, female, and getting sicker. (#CovidIsSTILLaThing #YallSureBlackLivesMatterThisTime🤨 #WeIncludingWomen? #WeIncludingALLWomen?) In other words, it’s emotionally, taxing also, y’all.

A small respite in a devastatingly difficult week.

Secondly, and less sassily 🙃, I have always known my illness has an eventual and final downturn. There will be a point when the onset of new symptoms is not an “infection” but is actually a sign of my lungs worsening. And there isn’t a lot of room left for them to “worsen to.” 😔 So we’ve been waiting anxiously to see if this round of antibiotics has an effect; my doctor said that if it didn’t, we’d need to do some tests to investigate. But Justin and I both registered the concern in his eyes (even on a telehealth appointment). And we knew the weight of the uncertainty immediately ahead of us. But today, though I am still needing to wear my oxygen most of the time (which is new for me), I say “praise.”

For the pills 💊 that have been working.

For the oxygen that fortifies me.

For the sleep that has mercifully visited me.

For my husband.

For my mother.

For my sisters.

For all the ancestors praying my strength.

And praise…for the body that has not yet quit.

Please, read this poem. Listen. You can hear the poet speak his own words. Few things are more powerful.

#MnikesaSpeaksOfASingleStory

“Stories matter. Many stories matter. Stories have been used to dispossess and to malign, but stories can also be used to empower and to humanize. Stories can break the dignity of a people, but stories can also repair that broken dignity….When we reject the single story, when we realize that there is never a single story about any place, we regain a kind of paradise.”

~Chimamanda Ngozi Adichie

This quote is from one of the most memorable TED Talks I’ve heard, entitled, “The Danger of a Single Story.” These are my 2 take-aways:

1. It is indeed true that we contain multitudes⭐️💫. 

2. If you only look at a single part of a thing, it is incomplete. That, too, is the danger of a single story. 

 The truth is as I sit here quarantined from my husband in our lovely but small apartment(It’s California, y’all; they’re all small.), I am scared.  We are unsure if either of us has COVID-19 or not; only today, almost 2 weeks after we first suspected that one of us might have some symptoms, have we both finally been able to be tested. 

In which I leave my house for the first time in 4 weeks to take the novel coronavirus test. Dressed as a slightly cold, futuristic alien-woman.

Prior to this, and still while we await results and instructions, we have been exercising an abundance of caution. With my advanced pulmonary fibrosis, I am in the high risk category.  Contrary to the constellation of conflicting information that the federal government is disseminating, this is not just about your “grandaddy, your pop pop  and your nana,” Mr. Surgeon General. It is confusing to people when you say this, sir, because there are more stories contained here than those of our elders. Many lives, if they survive, will remember this as a new defining moment by which they mark time—Before the Virus. After the Virus.  In a matter this urgent, consistent, accurate repetition are essential.  

I remember being in a huge district-wide orientation before the first days of school almost 20 years ago during my first year as a teacher.  The superintendent got up to speak to us and said that in our role as educators there was one critical thing we must do: “Repeat the important things.” Then he repeated himself, we all laughed, and—non-ironically— I never forgot that moment. It has been an invaluable principle in both my pedagogy and my life. So, I say again: in a matter of urgency, consistency and repetition are essential. Every time our officials speak in a time of public panic, it is essential that they speak with clarity, focus, and accuracy thereby consistently and repeatedly giving people the whole story, not a single story.  And there is a difference. 

The whole story in the case of the Novel Coronavirus includes the grim acceptance that there is still an immeasurable amount of uncertainty ahead. We do not like uncertainty. As my therapist tells me, the brain likes to have an answer. It would be easier and neater to be able to put our understanding of the COVID-19 in a box—only the elderly/only that race/only the other.  Any box will do, as long as we eliminate the uncertainty and its cousins: anxiety, overwhelm, and fear. But in a rush to do that—to steady the “markets” and to quell people’s trepidations— misinformation has prevailed. There are people facing this global pandemic choosing for themselves whatever box creates the least amount of uncertainty, regardless of the veracity or completeness contained therein. We have been warned that that these boxes do not and cannot contain the whole story. The first thousands of victims and their physicians have told us. The scientists, epidemiologists, and immunologists have told us. Our neighbors in the Eastern hemisphere who suffered first have told us. To look at all of it is to acknowledge that there are many, many stories present and that any kind of thriving through this, surviving through this means also accepting the inherent, cosmic recklessness of uncertainty.

I think this also means the following:

• In addition to our grandparents, there are dozens of children and young people with asthma who, if they get sick, will suffer greatly.  I hope that there is room in the hospitals for them; I hope they are not turned away if they are brown, poor or homeless.  All we can know now is that there is not one “type” of potentially sick person. Some are more likely to get this, due to age and illness, yet not all elderly people look their age,  nor do all sick people look sick. Doctors and scientists keep reminding us that there is still so much we do not yet know.

• There are chronically ill people like me who are right now reassessing what their End will look like; we are a resilient lot having to deal with endless doctors, pills, appointments, pain, and our mortality on a regular basis.  But this is new. Even for us. We are the asthma sufferers, people with heart and lung diseases, and we are also that other group that is often forgotten: those with rare diseases, like mine. Many of these diseases you have never heard of. (You can start advocating with us each year on Rare Disease Day! 😃) Our diseases are often called invisible because “we don’t look sick”—whatever that means. 😑 It takes unimaginable effort to keep living in a chronically ill body—to choose stay here, to be present and be visible. So invisible illness? We get the concept. But, nope. They are not invisible. Not to us or to our caretakers. And the countless stories of the people with rare illnesses who are walking through this pandemic are not invisible either. They are as varied and as complex as the illnesses that our bodies bear.

• There are individuals who have been quarantined—like me—for weeks. We have not had any physical touch in days. Even Simon the Girl Cat has had to stay away from me. She doesn’t understand why I won’t open the bedroom door. She keeps pawing at it asking to come sleep on my feet like she usually does. But for now, Cat Dad/AKA my husband gets to keep her with him in order to keep all the germs in one place. It’s wearing on me. If you’re quarantined from your people—furry and otherwise— it’s probably wearing on you, too. 

• For my husband and me, we are staying in separate rooms in our 1 bedroom apartment at all times, until we are certain about our results. The anxiety is palpable. We both know what it means if I get the virus.  We both wonder if we’ll both live to see the other side of this.  Will there be enough ventilators if I do get sick? Will my very weakened immune system be able to fight this? Will my compromised lungs have the strength to pull through? We were asking similar questions one year ago about my (possible) lung transplant, which is still an option and the only chance to "save” my life from failing lungs should they suddenly get worse from a bad infection or worsening disease; I don’t have a lot of reserve left. These were scary questions then when we were somewhat sure of the state of the world.  Now? They are indescribably stark. The stories that Justin and I tell ourselves as we keep going each day, as we filter what news we take in, as we handle our mental health, and do our best to care for each other 30 feet apart and via FaceTime are vastly different from each other. You know, because subjective reality.  I suspect this duality of experience is happening that way in most marriages and relationships globally. We are all kind of narrating ourselves through this; I think if we could read some of the observations from the people closest to us, what we’d find among the pages would be astounding. Profound. Heartbreaking. Insightful. Surprising. 

In the year A.V., After the Virus,  I suspect that there will be a reckoning of all the stories that are now being written subconsciously and otherwise. I hope so. I envision a collective of people raising their hands saying, “Yes, I have something to say, too. Someone else will need to hear this so they will know they aren’t alone. Or crazy. Or unworthy. Or failing.” And isn’t that what stories have always been able to do?

Rejecting the single story means rejecting a deception, a lie.  Like Chimimanda says, seeing the multitudes offers something greater: “a kind of paradise.” I don’t know what and who will populate that paradise in the year A.V., but I do know that to get there, to experience it, you’ve got to be willing to read the whole book, not just the convenient parts. 

#MnikesaSpeaksOfLiberation

Black Girl In Pink in Paris…with Oxygen

It took me a long time to accept certain things about myself.

A List:

Justin & Me (oh, and her)

1. That I, as a dancer growing up in the Pre-Misty Copeland era 90’s would always have muscular thighs, regardless of the “type” of body that my classical ballet training treasured.

   1. Co-point, along with #1, that I, as a dancer, was still worthy even though I didn’t begin my dance training until 11 years old, much later than most dancers. Worthy enough to dance semi-professionally. Worthy enough to found and run BalletHaven for 7 years, an organization that changed a community.

   2. That it is ok to be the only Black girl in the room; that still doesn’t mean I have to speak on behalf of “all black experience” because Blackness is not a monolith. And I learned that I still have a right to correct you if you call me “articulate” or “well-educated” in said rooms. That does not make me angry, combative or petty, however it might suggest something about you. 😬

   3. That I deserve to be in rooms that matter to me, even if I am the only Black woman there—rooms about education, literacy, women’s & girls’ rights, dance, equity, the arts.

   4. That being an introvert is not a new and trendy thing, but a deep part of my personality that makes “me” make so much more sense. I would say to my younger self, compassionately, “Be at peace. You’re more than ok.” Also, #LongLiveStayingInAndReadingABook.

   5. That some people will always be visibly uncomfortable with the way my oxygen looks—the way the reality of my illness presents itself. The way it means that this is the thing that will likely take my life. And it’s not my responsibility to make them comfortable with it. (Coincidentally, I would like very much not to have to lug Wallie, as my Portable Oxygen Concentrator is called, around with me. He’s heavy, makes my nose run and makes you painfully aware of how truly inaccessible the world is. But, I don’t get that choice. I would like to breathe, soooo…)

      This past October, I remember when we were traveling through France. There was a woman on the train ride from Paris to Avignon. We were in First Class, and I was wearing my oxygen because breathing. She and her partner looked like they were accustomed to traveling in First, but looks are deceiving, which of course is my entire point. What I remember so clearly is the way she kept staring. At me. Conspicuously. Boldy. I don’t know if it was because I was brown (Yes, I was the only one in First.) or because I was in an interracial relationship (Yep. Again, only one.) or because I was the only one with oxygen glued to my face, or because I have beautiful braids with hints of purple and pink mixed in (Yes, I was the only on both of those counts, too.) The point is I didn’t like it. It FELT like she was staring down her nose at me. But as a disabled, Black, interracially married woman, I’ve accepted that I’ve given you lots of reasons to stare. And I may stare back. (Which I did.) 😉

   6. That accepting help, for me, will s̶o̶m̶e̶t̶i̶m̶e̶s̶ often mean that I need the assistance of a wheelchair or scooter. It makes me uncomfortable, and I hate that people stare because after all, I look so “normal” 🙄 without my oxygen on and I can walk. I just can’t walk when it’s for long periods of time (like in museums, parks, zoos, grocery stores, airports, concert halls—you get the picture). So I’m doing what Michelle (THE Michelle, guys. You know theres only one, right?) would do. I lean on my Barack (His name is Justin.). He never makes me feel ugly or small, even in a wheelchair. I mean, look at us in the Louvre with the Mona Lisa! He advocates for me when I’m too tired, angry or stressed out to “people.” I used to think that leaning on someone like this made me a weak woman. I’m glad I’ve grown up from that kind of thinking. And I’m glad we’ve found each other.

   7. That speaking about the freedom of Black and Brown female bodies and minds threatens people. That demonstrating that freedom makes folks uncomfortable. Especially if those bodies are older. Wanna cause a commotion? Be brownish, female, and have something to say without asking permission. If you do it with sexy clothes on (even if you show the same amount that a man shows) you’ll get a bigger reaction. I’m a 41 year old dancer who was told that I would survive to 26—tops—given my diagnosis. So yeah, I’m here for all of the Afro-Carribean, Latinx excellence and thought that went into the 2/2/20 Halftime Show headlined by 2 women who are near-ish my age. I’ve accepted that some people want to argue about it, but I won’t be one of them. Maybe once your body has been through what a brown/black/female/disabled/daily-dying/dancer’s body is subjected to, you wouldn’t want to either.

   8. That though illness meant I had to retire from classroom teaching, and caused a deep depression I didn’t fully comprehend until much later, that wasn’t the end of my story as an educator. It sure felt like a permanent ending when it happened. I felt like I had lost my identity. But there was liberation waiting. I found it in remembering that my heart has always been for the empowerment of people of color and women. I found that my skills were still useful and needed. I remembered what Mufasa told Simba: Remember who you are. Me? I am Mnikesa. I teach people, especially women and people of color, to speak, read, write and listen at deep levels of comprehension because I believe that literacy is liberation.

Portrait of women liberated, lively and fearless. Photo by Getty Images, Hollywood Reporter

#MnikesaSpeaksofTravel: Ain’t I a Woman?

For the first time in over 15 years—since my systemic scleroderma diagnosis—I am traveling out of the country. It’s an unbelievable gift to be able to do so. My husband has a conference in Europe and I am able to tag along; we are extending our trip on both sides by several days to go to a couple more places we’ve always wanted to visit—Barcelona, Paris, the region of Provence.

And yet I find my sick, disabled body at a unique place. As people living in broken bodies, chronically & terminally ill patients like me are encouraged relentlessly by others “not to claim the disease” (a phrase whose spirit I understand however it mystifies me as to why people think it is a useful thing to say). We, the sick and dying, are admonished to “remember we are more than the disease.” Doctors and physical therapists remind us at almost every visit of the “consequential importance of exercise” and of an “active lifestyle.”

And at the same time, we—the incurable and slowly dying—have necessarily made a certain peace with our mortality. We often live in the valleys of anxiety and depression at the reality of what is happening to us. We live in this ambivalence, which is aptly defined as equal forces pushing against each other: here, I experience it as the force of illness that wants to take my life, and the will to fashion a Life of Abundance on my own terms.

So you can imagine my anger, frustration and disbelief as my husband and I began organizing my oxygen for this 2 week trip overseas having been met with these realities:

• My oxygen supplier (which is covered by my very good insurance) does not support overseas travel. That means they do not supply any supplemental equipment such as extra cannulas and batteries if it’s to support international travel. (Incidentally, you always need extras of both of these when you combine significant lung disease with any extended travel—even if it’s a day full of errands) .

• Their reasoning is that if something happens to the machine (malfunctioning, etc) they have no support system set up internationally to help me. So they refer out to another company, which I’ll call Company B.

• Company B does not, however, take anybody’s insurance ever. So to get the same level of equipment that I ALREADY HAVE AT HOME for my trip, it would cost $1075. This does NOT include the additional batteries I need, which are $50/week per battery. So that would be an additional $100 per battery for this trip. And I would need approximately 8 total batteries. If I heard the agent from Company B correctly when I called, the comparable POC (portable oxygen concentrator) comes with 3 batteries. So I’d need at least 5 more. (Fun fact: when traveling with oxygen, you must have a “permission slip” signed by your doctors and approved by the airlines. Every time. And each airline is different with what their slip looks like and the types of hoops you must jump through to prove you can fly; another post for another day. For all of the slips, the number of batteries you need is indicated on the form. I’ve never had an airline agent actually check for my batteries but they always ask to make sure I have the required amount; so if you’re thinking it’s possible to cheat somehow, it isn’t.) If you’re keeping track, that’s a minimum of approximately $1575 to take my “medicine” with me on this trip. Yes, it’s definitely medicine with a prescription.

• My husband reached out to support groups, I reached out to my primary care doctor, and my lung doctor…all to see what other options were available. I am not the only person trying to live a Life while on oxygen, I thought, as we began our search (and I still believe that). What I got back in response was an apologetic, this is just how it is. Unfortunately, most elderly patients aren’t traveling overseas. [Side note: I am 40 years old. I’ve been sick since I was 22. I know I’m not the only youngish person with this illness. And I suspect there are elderly people who want to and would travel more if there were not so many discouraging roadblocks in the way.]
  

I am grateful to have a support system that consists of people who will tirelessly speak up for me. I’m grateful to be in a mental space in spite of the steady push of depression and anxiety that allows me to speak up for myself. And yet I’m extremely troubled at this gap in care for people like me.

It is intellectually dishonest to expect patients to push and push and push for Life and then mindlessly block their attempts to do so. No, every patient’s idea of living their best life isn’t a trip overseas. But I’ve even been criticized in my former clinic for even traveling domestically (to see my twin sister and her family, for taking family vacations—very “normal” things) compared to other patients; that permission slip I mentioned? I remember one time calling with about 2 weeks notice to have it signed and emailed back to me so I could get it to the airlines in plenty of time. I fill it out; the staff (not even my doctor) has to sign. The 3rd or so trip in maybe the span of a year, I’d called to get a status update on my paperwork. The staff member said something indicating that I needed it “really soon” as if 2 weeks’ notice wasn’t nearly enough. I asked her how long patients usually gave. She said, “Oh, you know. Three months or so.” She went on to say that grandparents usually aren’t traveling that much and can plan out ahead. GREAT. But I’m not a grandparent, and the experience of disease and how we live in it is NOT a monolith. What is the point in in comparing me (or any patient) to another? I have not gone against any guidelines for this paperwork or caused any undue hardship. What exactly are you trying to accomplish, ma’am? Either we encourage LIFE or we do not, understanding that that definition will manifest differently for each patient according to age, temperament and their personal goals related to their disease severity. And I will say it again: SOME GRANDPARENTS 👏🏾MAY 👏🏾WANT 👏🏾TO 👏🏾CLIMB 👏🏾A 👏🏾MOTHER 👏🏾BLEEPING 👏🏾MOUNTAIN. If they have the strength to do it, who gon’ check them, boo????

It is my hope that by beginning to document these things, it will be among the first steps in changing what is considered the normal experience of often numbered days in the lives of patients like me and for the people who love us. And you know, I know I’ll be ok. Which is not saying I’m going to be cured or I’m going to get better. I can’t know that. But I am assured that whatever happens I have the chutzpah to speak up for myself and to tirelessly advocate for myself; that reactive personality comes in handy. 🙃And when I am overwrought and overwhelmed, my “people” are right there advocating for me. But I have lived too long in a body that’s both black and female to not be painfully aware that there are many people who walk roads like this alone. So, I’m raising my voice for all of us. So that one day, when a young dying woman chooses A Life in spite of her diagnosis and decides she will join her friends on that safari in Botswana in spite of her oxygen requirement, her nurse doesn’t have to regrettably tell her that Medicare, followed quickly by other insurance companies, has said that “traveling is a luxury so oxygen will only be covered domestically.” (Yes, Medicare actually said that.) While I don’t have Medicare, there are many, people who rely on its services. And their decision in this matter has caused other private insurance companies to follow suit. That matters.

I address these final words to Medicare and friends: You erroneously call travel a luxury. I would like to correct you. Yes, travel is many things: a gift, a blessing, a thing of value. (Actually, you all might be surprised at how skilled dying people are at recognizing and appreciating these things in life. Maybe you should talk to more of us? 🤷🏾‍♀️) But this I know for sure: being able to breathe, being able to choose a Life that matters—these are 2 things that are not luxuries. They are rights.

Travel Uniform for European Adventure 2019! 🧳

#MnikesaSpeaksOfTravelInPicturesPartOne

Some favorites so far in no particular order. Barcelona and Budapest.Day 5/15 🇪🇸 🇭🇺 🇫🇷 #lasagradafamilia #tablaucordobes #tiniestelevator #CasaVaganto #reallyprettycoffeemugthatmadmehappy🙇🏾‍♀️

#MnikesaSpeaksOfTravel ♥️ Packing Light

I get obsessed with lists. And order. And more lists. Part of it is personality. Part of it is a recognition (formally subconscious) that when your body is breaking or dying or diseasing at an incurable and unpredictable rate that is completely out of your control, you will search for anything that gives back to you a small sense of the control you’ve lost.

So in my illness, I’ve become a list-lover.

Can’t sleep? Make a list.

Upset? Make a list?

Generalized anxiety or existential ick? Read a list!

(Side Note A: There are some great ones from truly helpful feeds of trusted therapists I follow on IG. Side Note B:Of course, following them isn’t a substitute for going to your own therapist, which I do 2x a week every week. Side Note C: It’s ok if you’re thinking of going, and are scared. I was at first, too. Sometimes I still am! But I wouldn’t change it. Side Note D: The profiles I mentioned of the people I like are here, here, here, here and here.)

So with all this listiness, of course I like packing lists as I prepare to travel. I’ve found my favorite packing app EVER, and it’s been a gift.

But I’ve also noticed that I can never seem to be the girl in the airport who travels with the ultra mini chain purse and one magazine as her carryon. (🤨How?!) Or even the person who bops along the concourse effortlessly—one handed— with their very cute “luggage wardrobe” (no shade, Away Luggage. I really do want my own Wardrobe—particularly the pink carryon and tote🙂). It’s just that when you’re chronically ill like me, you need another whole luggage addendum to your situation, depending on how sick you happen to be at the moment, to carry any of the following items:

• Meds for the plane (for pain, sleep, digestion, coughing)

• Daily meds to carryon (approx 12 pills in my case) in case your luggage gets lost

• batteries for your oxygen to carryon(2-6, weighing about 3 pounds each)

• charger for oxygen to carryon(weighing about 2 pounds)

• heat packs to carryon(for heart and lung symptoms; ALWAYS COLD!)

• mittens to carryon(see above)

• a blanket (yes, even in Cancun and Maui I need my heating blanket; mercifully I can pack this)

• Emergency meds (because autoimmunity doesn’t play nice and is unpredictable AF)

  • allergy meds, respiratory infection meds, GI rescue meds, fever reducer, endometriosis emergency meds, extra clothes for explosions out of any orifices

It might be another tote, sizing up your carry-on to a checked piece or simply surrendering to the fact that—no, you can not reasonably negotiate: your 15-pound wheeling oxygen concentrator, a rolling carryon luggage piece, a purse/backpack AND your batteries,charger,plane meds, emergency meds, and other supplies.

In packing this week and looking at lots of fabulous lists by some femme minimalist packers I admire, I realized something: they weren’t exactly for me. I mean they were all aimed at traveling light which is an aspiration of mine. Just like them, I do hate feeling bogged down unnecessarily. But that’s just it! I realized today that I don’t have to. And I wanted you to know that, too. Maybe there’s a “traveling light” for us. Maybe it’s agreeing with ourselves that for each trip (to the mailbox, grocery store, couch or beyond…)we will let go of one expectation or feeling of guilt we’re holding on to from when our bodies were labeled “healthier” or when we didn’t feel “broken” or from any of those other hurtful things we say to ourselves. Because the truth is, I need to take all that heavy paraphernalia with me. And if you’re sick, you do, too. That’s not changing any time soon. But we don’t have to feel bogged down. We can control that part, bit by bit. And, hell. Maybe I’ll make a packing light list for Sick Chicks. 💪🏾 In the meantime, here’s to making peace with how you can #TravelLight.

Simon the Girl Cat practices packing herself into a packing cube.