Fixed Points in Time

Originally written 9/11/2018 - still true.

 1. Grief has touched us all, and the loss of 1 loved one is just as valid as the loss of another. This is true no matter how a life ended - in a tower; on a hijacked plane; in your arms in a hospital after a surgery.

2. Donations to charities, for first responders and volunteers who put themselves into harms way often, are welcomed on a local level just as much as the help is welcomed by the brave souls at Ground Zero.

3. Post Traumatic Stress Disorder (PTSD) happens to the volunteers of the local firefighting truck & ladder just as sure as it happens with full fledged firefighters - and they need just as much compassion and care.

4. Grief does not stop. Some learn to carry it. Some never do. Rather than "fixing" someone, sit down next to them and just *be there.* Silence can soothe a soul far more deeply than words.

5. Today is marked as a fixed point of history. "Where were you that day?" We ask just as often about Kennedy's assassination, Oswald's death by Jack Ruby, the Challenger Explosion. For a moment, we tasted the daily fear other countries have accepted as the status quo. We had no one we could call on. Our seeming invincibility on the Global Stage fell, as we fell to our knees.

So commemorate the historical tragedy today. Recall where you were. Feel your love of this country in your blood as you react to the unfathomable.

I only suggest that we recall the pain of loss as it has touched our lives in that most intimate of ways - the loss of those we loved so much, so sincerely.

I struggle to carry myself as the person who my loved ones wanted me to become. I fail routinely at "letting go" of the grief every missing piece of my heart pours into my soul. But I continue to try. And I always will. Always.

Midnight

 It's almost midnight. I'm wearing a t-shirt announcing the important reality: "Pudge controls the weather." The Princess & The Frog is announcing Bayou Back Bay queens in the background.

It feels as though a bowling ball is breaking my ribs as it rams under my ribcage to destinations unknown.

So here we are. Less than 15 minutes left in my Saturday. I've had 2 good days in 9. Most of those days were me laying in bed - some sleeping, most not getting up for anything beyond medications, food, or using the bathroom.

Thursday was an okay day. I fought hard to get my tiny list of errands done. Even got blood work done on my monthly schedule.

The 9 AM Friday phone call surprised me. The news that weekly blood work is my new routine was, and is, a 2 layer puzzle.

I can explain why I have to be watched so closely. I know every medical term. I can give you estimates on prognosis and other clinical data.

I can also tell you I want my Mom. That comfort, that determined attitude that "only the best of outcomes is happening. Non-negotiable." My Mom was incredibly capable and strong. It would be fine if it was a silent moment. Just a hug. I think that would be enough.

The truth is that I'm sicker. It took me 5 years to jump 5 points on the "how bad it is & how high on the list for transplant" scale. In the last 3 weeks I've jumped 8 points.

What does that mean? Medically I'm in a fragile position. Personally? It's harder to face down the fear. No one can tell me how much worse I'll be by the time a liver is available for me.

So it's just past midnight. I'm enjoying Disney, hoping the pain will shift enough to allow sleep. I'm intellectually prepared for the world's shift to new reality. And I'm scared.

Please don't ask me what you can do. I don't know what I can do so I have no grasp on what I can say "please help by" yet. Video chats are wonderful! Pictures and texts, phone calls... Wonderful. I beg your patience. I'm swimming with anchors and chains. If I forget important things, if I miss a party or celebration? I still love you. I'm still here. Just trying to find my way forward, and straight on through.

Can't Do It

It's been a minute since I wrote here. Truly, my intentions are good but the landing remains unstuck.

I was stable enough to take a small trip to another state. I did all I could to prep for a deliberately walk-filled visit. I was not, however, anticipating a 400% increase in what I normally do. Still, it was lovely.

I came home to the beginnings of the COVID-19 horror.

I ironically was too tired to do much so I was "self isolating" as a matter of course. I've watched terror multiply in grocery stores, pharmaceutical spots and even medical platforms.

I've finally reached a place where I just can't anymore.

I'm out of patience for defiant jerks.

I'm out of understanding for why things that I *need,* in a tangible medical sense, are sitting idly on the shelves of smug self righteousness.

I'm done listening patiently as people lecture me about my need to be careful.

I can't bleach down my purchases effectively - all the bleach wipes are gone. I have 1 package of 24 rolls of toilet paper, and the unfortunate reality is that I use more than an average person because of my medical needs. I have to justify purchases people don't understand - like easily digested snacks I can have at 2 am when I need to take more pain medication to sleep & pain meds on an empty stomach could cause vomiting, which could cause enough internal damage I'd require surgery to fix it. I have to drink electrolyte infused beverages (thank God for smart water) because my body can't absorb them right and they're required, but these are becoming increasingly rare finds as well.

So I hear every word. And I know it's love & worry. But I just can't hear it anymore.

After I'm in public I come home & shower. I routinely scrub my hands over 20 seconds because my immune system is a jerk. I cook at home because I'm still learning what my body can handle with this new shorter digestive system. I avoid any potential illness carriers - one cold last Fall and I ended up in septic shock because of all the strep in my blood.

So I get it. I have, up to know, found a great deal of affection in the care. It becomes frustrating when love becomes lectures on what I need to do. I'm taking care, being aggressive in my healthcare behaviour, and I can say with confidence that my methods of doing so are more thorough than the current guidelines for this pandemic require.

Check on people. Support local businesses. Observe overly cautious space requests. Actively take responsibility for your part in this scary time.

Please think about what you say, though. Many people with immune system illness live like this all the time. I can only speak for myself on this one, but asking is so much better than telling.

Bad: "You should..." "Boost your immune system!" "You look tired - you have it! I know you do!"

Good: "How do you normally get through cold/flu season?" "I know your immune system is crazy - how does that impact how this might hit you?" "Is there anything I can help with, so we can limit any exposure for you?" "I love you & I'm scared this will hurt you - are there things about how you take care of yourself you're comfortable sharing? I think that will help me feel less anxious about your well being."

I am good. I'm extremely well taken care of, by my husband & my medical staff. Please keep what I said in mind. It's exhaustive to use any energy reserves I've fought to replenish to argue that I've got this risk well minimized. And that's harder on me right now than just about everything else.

A Brief

I have found a new primary care doctor.

I had a lot of blood tests Friday. I have the white blood cell count of a slug and the red blood cell count of half a slug. I have been coughing completely clear grossness.

There was a small moment this weekend when we saw family. Dropped off a couple Christmas presents.

So I sound like I have a cold, even though I don't. I'm hiding home to avoid all manner of germ infestations. I'm thankful for the sleep I've gotten since Friday (pain management is life changing). I wish I could hug everyone but my body is insane. Rest and isolation are my current plan. So I'm hoping I rebound. We shall see.

Friday Fun

This morning I met with a physician intended to be my new primary care. She heard 1 word and literally stopped listening to anything I said. I was accused of being a drug seeking liar who was getting multiple drugs from multiple doctors at the same time.

I cannot take over the counter pain medication. Tylenol has caffeine in it which triggers terrible headaches in me, and UT damages the liver so that's very much a no. Ibuprofen causes anemia and blood clotting issues. There's nothing I can do about the fact that it hurts when I lay down to sleep and I ask for pain management to give me just enough relief to go to sleep. I have been on the same milligram dosage and number of times a day taken since I was initially prescribed the medication. I am therefore not escalating my dosage nor am I abusing the substance.

It has been an impressive amount of time since I felt so despised and rejected by a doctor. I immediately contacted my other doctors. I don't know how I'll cope with the pain & sleeping challenges but at least I'll never have to see that doctor again. She didn't even ask if I was in pain. Just went from a semi nice person to not speaking for the majority of the 1+hours  I was in her office, unless it was to tell me I was lying.

So I'm trying to salvage my day. Stay positive and remember that the information backs me up, not the "drug seeker" myth. I have pain that validates my request. The pain management center who REFERRED ME TO THIS PHYSICIAN indicated that my pain management needs were so low, a family care practitioner should absolutely monitor and prescribe my pain medication.

So I burned the dinner I tried to make accidentally. And I've napped. And a nurse is coming at 8 pm to draw blood for lab tests. So that's fun. Hoping my day will be better by the time it's over. Because right now I'm still hurt emotionally from her allegations, and hurting physically from my myriad illnesses, abdominal surgeries and adhesions.

Jess Care Pages

It's been a long time, to quote Timbaland.

This is the new, official home of the PUBLIC ACCESS health support and treatment for me.

I will update the look & entries tomorrow but for tonight, if you want to share my medical adventures with others, this is the public platform I'm providing for that opportunity.

Sending you love & light for all the joy and care sent to Jon & I. We will catch up soon.

Seeking Relief

Chaos is not the best look on many people. We wear it in panicked expressions, rapid or even ragged breathing, even tears. To feel the solid ground we expected under our feet shudder, shake, disappear... it goes deeper than nervousness. This is a primary, visceral fear.

To abate our terror, we seek relief.

We learn from the world where we can find sanctuary. For some, immediate family is a welcoming haven. For others, it is art, or work, or the family they have created in friends.

We make choices when faced with panic. Not all those choices are great. Sometimes, we eat poorly. We push away people whose intentions are good. We push reckless behavior to the limit, daring some force to interfere or at least determine whether you keep the wheel straight to go over the island cliff or whip it back onto the road at the last possible second.

Obviously, my body is a betrayal I never anticipated. Damaged before I could speak, I knew the physical was no reflection of my internal world. My mind became my refuge, my solace.

Sometimes the pain that rocks my world is terrifying. There are people in this world who feel slicing agony in their left side and think, "Is it cancer? Is it bleeding?" There are people who dread simple tasks because at any moment, that chaos can engulf them.

So we seek relief. We abate the pain in the unknown as best we can.

We all do. We all seek relief.

Love can be a relief. Opening a message that was waiting just for you, filled with images of your favorite things? Hearing a voicemail filled with laughter and inside jokes, reminding you that you matter to someone who thought of you just because they love you?

Food can be a relief. Not just eating it. At times, being able to complete a dish that is technically challenging is actually a relief. It may take me forever, but it's still something I can do.

Playing games, in all their forms, can be so restful. Some games are meditative. I can make no claim to have found Zen Koi on my own, but many of my Warrior Women with chronic pain/ailment issues find satisfaction and distraction in its soothing music and simple gameplay. And Yet It Moves, on Wii, is beautiful and engaging with simple colors and soothing music.

People can be both relief and weight. These are the razor edges of human experience. Someone intending to be so helpful, slicing wounds beyond repair - and the weight of your own wellbeing. Do you forgive an honest mistake? Is the jagged edge stitchless and unhealing? When all you can do is put on clothes in the morning, and barely function, is it fair to expect that you repair the breech?

Razors aren't just hidden in the faces of the world. Movies, books, comics: the bastion of refuge for so many can hide remembrances that rob you of breath, and chase away the relief you sought. We look to touchstones, we search out the ways that other people we know and trust have found their way through the pain and chaos we all carry, and we hope to make it through the pitfalls more intact than not.

Rosemary Kennedy's quote about time healing wounds is one of my favorites of all time. She shares the heartbreak that a well of painful loss washes some of us in. That the wound never heals, and we only learn to carry the pain is the truest of all lessons I have ever learned.

We are surrounded by varying degrees of people in chaos. We exist in a world where we never know what winds blow across our lives, nor what they carry. Even as I read "I'll Be Gone In The Dark" by the late Michelle McNamara, I find myself sobbing at a life lived in service to others, gone as she struggled to find a way to bring a glimpse of peace into the lives of those who will find no relief without answers.

Michelle McNamara told her husband, Patton Oswalt, frequently, that it's chaos and we should simply be kind to one another. That stays with me.

I carry the pain of a body that is dying faster than it should at my age, and all the surgeries and toxic chemicals that are weirdly keeping me alive while making my hair/eye lashes/memory disappear in clumps. I carry the loss of my parents, my brother, the niece who will never recover from a car accident, the extended family I missed out on for one reason or another. My friends who are gone, Melissa Moses chief among them, are prominent scars across my heart.

I also carry the hope of relief.

I am frequently given relief. Texts from my Sister in the Seattle area, texts from my Sister Melissa, my husband finds ways throughout the day to give me laughter and sweetness. I have an extended family of in-laws without whom I would be lost. I cook the meals my mother taught me. I can pack a car with Tetris-style precision because my Dad insisted on help. I sometimes put lotion on the backs of my hands and rub them together, hearing Melissa Moses shyly whisper, "I don't like it on my palms." I love hot chocolate, and can still remember the hot chocolates my niece and I would drive out to get before her car accident left her in a coma. Even the razors that once sliced into my heart and left me a wounded mess now help me clear the cobwebs, and remember the sweetness of the loves I've carried.

So onward we strive. We step with as much confidence as we can, on this walk through life. We carry scars and secrets, we find family in the friends who stay with us. We feel pain and we seek relief.

Be gentle with the people around you. Most of us are doing our best, and the ones who aren't are hunting for relief for a wound they may not even know they have.