Where Does the Time Go?

I got the vaccine March 30th, the perfect birthday gift! I am now 34, which I know is still young, but I can’t help but wonder where the time goes. I have had ALS for nearly six years. I was a teenager 20 years ago. Evan and I have been together 15 years! We were babies when we first met! In my mind, it’s forever June and I am 23. We had this amazing summer where we canoed and sang all the while. We hunted for fossils and I found one that was three million years old! We also went on this road trip from Virginia to Atlanta where we did a sleepover at the world famous aquarium. We pretended we were on our honeymoon and they gave us a really romantic time. We slept under the whale shark tank.

What age are you eternally? What was one of your best summers?

Health Update: Facing an Old Enemy

First, I must thank you for your generous donations to Friends of Rachel after my call for help for respite funds for Evan in my last post, “Disappearing Act.” You teach me about generosity each time I ask for donations.

Now on to my health, mental and physical. Both are not good. I sleep 18 – 20 hours a day, which wreaks havoc on my relationships, and consequently my mental health. I am also incredibly anxious again, though this time Evan doesn’t have to coach me through brushing my teeth. Still, this a serious problem. I am wondering if I have general anxiety disorder. The good news is I have a therapist now to ask questions like that. He’s also going to help me write even when I am anxious. I have so much to share with you. 14 post topic ideas! But speaking of writing…

I have felt like such a failure for having a few weeks of clarity and peace during which I could write a post asking for financial help, then being too anxious again to write a simple thank you note. I have been worried you would feel like I used you. Just know that what is happening in my head is as real to me as a flesh and blood wound. I just can’t put a tourniquet on it.

I can make you a promise though. I will complete and edit old drafts for you while I learn to write while anxious. This way, you’ll know I haven’t forgotten you. I could never forget you, dear reader, not even on my most anxious day.

Signing off.

Your Rachel

PS It’s hard for me to publish and reply to comments, but I am reading them and I love them!

Disappearing Act

“Love ya, Sweet Rach!” my primary caregiver called over her shoulder with a big smile, her typical 5 o’clock farewell. I was so completely dependent on her, so used to waking up to her face, that I could never in my wildest dreams imagine she simply would disappear from my life.

My main caregiver quit without a day’s notice. Now we’re up a creek because, as my caseworker said, “The Medicaid well has run dry,” meaning that the agencies our insurance covers have not a single caregiver available. We are on a waiting list. Until it’s our turn – and we find someone willing to take on a high needs client like me – Evan does everything. Every day. He provides my care 7 days a week, up to 16 hours a day. My care includes vent suctioning, trach care and cleaning, meals and meds via feeding tube, and so much more.

It’s been well over a month since my caregiver left us. Now, we’re drawing from Friends of Rachel to give Evan much-needed respite. This is currently just not sustainable because we use the fund to cover nights so Evan can sleep. That expense is one we can afford, thanks to your generosity.

I’m afraid we must call on you again, though I had hoped not to have to make this request for several months. Please consider making a gift to Friends of Rachel so Evan can have a bit of a break, if only for this month. I know this could not come at a worse time. We are just coming out of Giving Tuesday, you’re doing holiday shopping, and so many worthy causes need donations. Still, I have to ask because this is survival for us. Evan simply can’t go on like this. A gift would mean the world to us.

Just a reminder, care is $36 / hour and $144 / four hour shift, though anything you can give would be appreciated. We know it has been a rough year. Click on the link below for a quick and easy way to donate through PayPal.

Thank you, and happy holidays.

Contribute here:

Health Update: I am not in the driver’s seat anymore

If we are going to do this, it has to be fast. I’m not in the driver’s seat anymore. Who knows how much time I have before It takes over again? It appeared without any known cause, but It acted fast. I wake up with a racing heart, overwhelmed by even the thought of brushing my teeth. Evan is the only thing It fears. Each morning he sits with me, rubbing my head and saying wonderful things to me, things like, “I love you more than anything in the entire universe, my beautiful, precious angel.” That’s only effective for so long after he leaves though. It is relentless. On my bad days, It doesn’t let me eat or sleep.

I have just been put on medicine for the anxiety. I hope and pray it works quickly. Until then, It will keep me silent. I can’t even answer the beautiful comments left by people like Nick and my friend with PRS. Oh, the anxiety is taking over. I have to –

Health Update Part 3 / 3 : Depression and Sweet Release

Day 8. Today is full of visitors, which I need right now.
I wake up to a beautiful tattooed arm of black etchings of roses I would know anywhere. It’s Lorraina, the dear caregiver who was there at the very beginning of this wretched journey, reaching out to squeeze my hand.. “Oh Rach, I just want to take care of you!”
Next come my in-laws, who I feel like I haven’t seen in ages. They always make me smile. Lorraina leaves because it is getting crowed.
Then the star of the day arrives: Dr. Goslin. My neurologist and I have a special bond. “I have been thinking of you all week. How are you doing?”
I use my language of blinking to answer. “I’m great!” I back the reply up with what Evan calls my “million dollar smile.” Dr. G takes a picture of said smile and tells me she loves me.
She shows me a picture of her new Icelandic horse,, and then she has to say goodbye. A short while later, everyone follows until it’s only my friend Ellen, who manages to light up the room on her own.
“I wore this gown just for you. Do you like it?”
“It could be worse. It could have tiny flowers on it” she reasons. Note: Next time I see her, she’s wearing a mask with tiny flowers on it.
Then she has to leave, too, so now it’s just my mom and Evan. The room that was so full of life just moments ago is now just as sterile and barren as before. That insidious thing that has been growing all week finds a black home in my brain and cracks me open I feel myself sliding into depression. I try to reason with myself and focus on the immense love that remains, burning bright within my mother and husband. It’s not enough though. No

Day 9. Dark Evan emerges. He takes pictures of the screen saver on the nurse’s computer, pointing out the absolute nonsense of it – all of which I can see from my hospital bed. Then Dark Evan takes pictures of the super hero figurines hanging by their necks across the courtyard outside the window. He says, “How sick! Who’s this even for?”
Mom is going crazy looking at my stats on the board next to me. The display includes lung volume and pressure, which mean little to me but everything to her. Tomorrow’s the day we go home, tomorrow, tomorrow. I chant in my head. Dark Evan “packs” by throwing everything in a bag. Tomorrow, tomorrow…

Day 10. From the minute I wake up, it feels like Christmas. Today, I am getting my freedom.
Then we’re told the Trilogy isn’t coming today. That there are none in the hospital, or even the state. It could take weeks or months to get a Trilogy.
Evan gets worked up. “Her scheduled surgery was last Friday. We were supposed to go home this week. What was your plan?” he demands of the equipment center representative.
Mom puts down her bag that we packed last night with such certainty. If there’s one thing you should know about my mom, it’s that she’s a fierce warrior. She joins the fight.
But I don’t get the chance to see her in her glory. I have my own mission to accomplish. I lower the volume of my tobii, and whisper Evan’s name.
He hurries away to hear what I need to say.
“I’m not doing well,” I say, which is our code for “my depression is back.”
“We’ve got to get you out of here,” he says, his knuckles tightening to white on the bed rail between us. This whole situation is wrong. There should be nothing between us. I break down further. He leaves my side and heads to the window sill, then grabs the Astral ventilator and settles on his cot. He takes out his phone and alternates between typing away on the phone and Astral, waging his own quiet war. I am overwhelmed at last by the love these two people have for me. I’m back in the game and ready to fight, which in this situation means letting things be done to me.
After my mom gets rid of the representative, we get down to the plan. Evan is programming the Astral to match the Trilogy. Then he will call Home Medical Equipment. HME will send a respiratory therapist to check out the machine and either say it worked.- at which point, we would have to leave the hospital Against Medical Advice – or they could give us the Trilogy we suspect they have been withholding.
So we wait while Evan works. Mom leaves to get him some brain food – pizza – and I stare at him while he works until I fall asleep. I wake up to a strange man entering the room. Evidently Evan made the phone call to HME while I was asleep, and this is their representative. The moment of truth arrives. Time to let things be done to me.
The representative approves of the programming Evan did. I am proud of my brilliant man. Now it’s time to see if the circuit works. The representative lays the Astral circuit on my chest, and is about to plug it in to my trach when Evan sees The circuit isn’t blowing air. He climbs over the representative, too determined to be polite. He’s in “save my wife” mode.
“There’s no air coming out,” he points out, and the representative seems entirely shocked by this. “Do you mind if I do that,” Evan says. It’s more of a statement than a question.
“Sure,” the representative readily agrees.
A hospital higher up comes to watch. My mom kicks in with, “If you let her leave with that machine and something happens to her, I will rain holy hell down on this hospital.”
Evan tries and tries to get the circuit to blow air, but the Astral circuit just won’t work. I am glad to be in Evan’s hands again, regardless of the outcome of the experiment.
The representative excuses himself to make a phone call. Within five minutes, he returns and says, “You have a Trilogy.” We didn’t know why HME would withhold the machine at the time. However, now that ventilators are on the news as the virus sweeps the globe, the difficulty around getting a working ventilator has become clear.
We don’t believe our ears, but within two hours, our very own Trilogy arrives! The hospital wants to watch me overnight to make sure the machine works, which I feel is fair considering the shoddy work of the HME representative. But tomorrow, tomorrow!

Day 11. “Don’t pay attention to what they’re doing to you,” Heather, the respiratory therapist, says from up near my head. I am strapped to yet another gurney, and it feels like the squad of EMTs is breaking my fingers one at a time as they strap me in.
“You’re going home to sleep in your own bed in your own pajamas,” she continues. Then I am whisked away through the halls, never to see her again. I hope she knows what a difference she made in those final moments in the hospital. Then I am outside for the first time in nearly two weeks. It’s cold, halfway between lion and lamb, and the trees lay their dappled shadows across me. Spring happened while I was in the hospital.
I am loaded up, and Evan hops into the ambulance beside me. The wheels are churning up the mucus still in my lungs from awful Day 1. I want to cough, but my lungs have been too weak to cough independently for over a year now. I catch Evan’s gaze, then look at the machine called a cough assist. He springs into action. He pulls off part of my trach and for a few seconds, my lungs are a vacuum. Then he hooks up the cough assist, and I am hacking. Relief. I look at him with gratitude, and he says, “Clear lungs, full heart.” I smile and nod in agreement.
We almost pass our little blue home, but the ambulance maneuvers into our driveway. Then I am out in spring again. The EMTs pause to discuss entrance strategies. I notice every detail. The tulips bloomed without me. They humble me because, despite me almost losing my mind, the rest of the world continued on.
Then we are moving again through the front door, past the living room and into our bedroom. Before I know it, I’m being transferred to my own cozy bed. The EMTs are gone so fast, they could have been a figment of my imagination.
Evan kneels beside me, and a tear slips out. “Are you overwhelmed?” he asks.
I nod “Do you need some privacy?” I nod again. He kisses me on the forehead and leaves.
Finally, finally, I cry.

thing is enough. That’s the way depression works and hurts.

Health Update Part 2 /3 : More Unfortunate Events and Some Romance

Day 4. Air, beautiful air! Over the five years I have had ALS, I forgot how it feels to take a full breath. I wish I had done this months ago. (Dr. Libby, take that and rejoice!)
My mom arrives, and the first words out of her mouth are, “You look so good!”
Evan tells crazy stories about our pets. We get a room in 2R, the respiratory unit, where there’s an actual cot for Evan. It is all around a joyful day.

Day 5. We are settling in nicely for what we hope won’t be a long stay. Evan organizes the machines that will keep my lungs clear and pumping. I nap, and mom collects some food from the cafeteria. Today ends with a far more solemn Evan reading the manuals for the machines. He also dives into learning the functions I will need to survive. I am a patient guinea pig, even when it hurts, even when it feels like I am suffocating. Mom watches with fear in her eyes. Even at age 32, I will always be her baby.
The nurses start giving me nightly injections of blood thinner in my stomach to prevent blood clots, and an inky black substance that no one else can see appears beneath my fingernails. I know exactly what it is, though. Something wicked this way comes.

Day 6. The hospital stay has been long enough to wear on everyone. The black thing runs up the veins of my wrists.
Evan develops what he calls “hospital hair,” a product of not showering and running his hand through his hair in anxiety. He says he worries whenever he is away from me. I worry, too. I’m an expert at that. When mom is gone for the night, I ask Evan a question that has been weighing on me. “Will you ever get tired of the sound of my machines?”
He puts the manual down.” No,” he says without hesitation. “That’s the sound of our forever.”

Day 7. Friday rolls around, the day of the scheduled surgery.
The pulmonologist comes in and says, “You’re stable and ready to go home once you get your ventilator from the equipment center.”
My heart soars! The excitement in that horrible beige room is tangible.
“We brought our ventilator with us,” Evan says, pointing to the machine we received from our clinic.
“That’s an Astral, and you need a Trilogy. No one in the hospital even knows how to work one of those.” The insidious black has climbed up my arms and is webbing across my neck.
“I bet we get Trilogy this afternoon and are home tomorrow,” Evan says.
“Hopefully,” the doctor says. “The equipment center is only open business hours, so either you get a Trilogy today, or you’re here for the weekend.”
My heart plummets through my stomach and goes splat on the floor like a rotten tomato.
This Trilogy doesn’t come today.

Health Update Part 1 / 3: A Series of Unfortunate Events

Day 1. I wake up in the worst possible way. I’m feverish, my oxygen has plummeted to 83, and part of my left lung has collapsed and is filling with fluid. Someone calls 911, but everything is a blur, and I just want to sleep. I don’t care if I live or die. I actually think this is a very peaceful way to go. I try thinking of Evan to bolster me, to give me some of my old fight. That doesn’t work. I’m on a gurney, and on the way out the front door. My dear, purple-haired caregiver Lorraina, calls, “I love you!”
In the ambulance, someone shoves a mask on my face. A man says, “I know these things are unbearable. Just hang in there. We are only ten minutes away.”
I don’t know what the man is talking about because to me, the mask is heaven. It smells like maple syrup, and it’s pushing air into my lungs. Suddenly, I care very much about living. I look up at Evan, who attempts a small smile and squeezes my hand.
The ambulance stops with a jolt, and I am whisked through hallways to a glass room in the ER. Evan arrives breathless seconds later with my tobii, wasting no time setting it up so I can communicate.
“Am I going to die?” I ask him.
“No,” he promises, as if his love and will are enough to keep me, but when the doctor comes in, the first thing he says is: “She’s out of danger now, right?”
The doctor nods, saying, “It’s a good thing you came in when you did.”
I don’t remember anything of the next 24 hours.

Day 2. I wake up to searing pain on my lower back. I am being transferred to another gurney, another ambulance, another hospital. My hospital. Apparently, I couldn’t make it that far yesterday. Evan says I was on oxygen and a machine that breathed for me all day and night.
This ICU room is smaller than the last, and the IV in the wrist hurts worse. This little pain temporarily distracts me from the burning of my back. However, once we are settled in, the clawing pain returns tenfold, so I tell the nurse, and he rolls me onto my side. We discover a foot long wound across my back. He cleans up the blood while Evan holds me. Once the wound is bandaged, I am rolled over onto my back. This pain feels more bearable now.
“Transfers can be violent depending on the material you use,” the nurse informs us.
We’re alone only seconds when the surgeon walks in and introduces himself so quickly that I don’t catch his name.
He says, “You have two options. Surgery is tomorrow, but for now, I can have a tube put down into your lungs with a camera at the end to give me a better look at what’s going on. The other option is to let the monitors do their job and send signals if you are in distress.”
I feel so ashamed when I tell him that I don’t want the camera. I have been scared terribly before, but that has made me cautious. I have never actually shied away from something out of fear that I can remember.
Once we’re alone, Evan says he is proud of me.
“For being a coward?” I ask.
“For being brave enough to make these tough choices,” he says.
I don’t – or can’t – believe him, so I switch the subject. “Where will you sleep?” I ask.
After surveying the room, Evan pulls a chair across from me so if the tobii dies, he can read my face. We settle in for the night.

Day 3. I remember shockingly little of the day of the surgery. I sleep up to and after the main event. All that stands out is Evan asking, “Does it feel weird?”
“No,” I say, not entirely sure what he means. Then lights out.

Friends of Rachel

I am on a ventilator, and I love it! However, I need 24 / 7 care for the rest of my life to prevent blocked lungs that could lead to a coma.

If I ever taught your children in my life before ALS, and you were happy with the work I did ; if you have ever been moved by a story you have read on this blog, please consider becoming a Friend of Rachel!

One hour of care costs $36, and a four hour shift is $144. We are looking for monthly or annual gifts (don’t worry, I’ll remind you by posting this every March). Please consider donating in whatever way and amount you can!
Thank you.



Winding Down

I told you that a long absence means a decline in my health. Read on for the most important health update I have ever posted over the years.

When I heard the news that my pulmonologist wants me to go on a ventilator, I thought, “I’m not ready. I need more time free of a machine.” Another few years wouldn’t have changed that feeling, though. I can’t believe my time is almost up. If not for the technology of a ventilator, my lungs would just stop. I just really felt that my will was strong enough to make a difference. I was stubborn and arrogant, as if no one before me ever had this much fight in them. I am no different than any of thousands of other people living with this merciless disease.

I have no delusions about how difficult my future will be. My greatest fear is that we won’t be able to organize the 24 / 7 care that is necessary for people on ventilators, and I will end up in a group home. Being on a ventilator will be a hard way of life, but I will be alive. As long as Evan lives, I am not done. I will do absolutely anything to stay here on earth with him.

I’m afraid, but there is a great deal of work to do now, so I’m trying to be brave and throw myself into it. We are making a list of questions for the medicaid representative regarding skilled care coverage and availability (even if care is covered financially, finding caregivers who meet Medicaid’s rigid qualifications can be a real struggle).

My neurologist said I’m ready for this in a lot of ways because I already use the hoyer lift for transferring, the tobii for communicating, and the feeding tube for eating. I guess people whose lungs fail first have a really hard time adjusting to losing speaking and eating all at once because the trach (the procedure to go on a ventilator) takes away all that. I have had the luxury of easing into ALS in a way I can tolerate. For that I’m immensely grateful.

So here we go on yet another ALS adventure. I am dealing with negative side effects of living with lungs that are only functioning at 25%, mostly extreme exhaustion. I wake up tired. I have to take a long nap after getting my hair brushed and face cleaned. I’m looking forward to being more energetic. I miss spending time with Evan, family and friends, writing and reading. I miss my life. The ventilator should give it back.

My Gratitude List

  1. Evan, Evan, Evan!
  2. 2. The family, friends, and dogs who support me as I face the monster inside of me
  3. 3. Every day without spasms
  4. 4. Every hour without pain
  5. 5. My caregivers – they are remarkable women
  6. 6. The fact that ALS will never take my mind
  7. 7. Writing
  8. 8. Books
  9. 9. I will never lose sensation
  10. 10. You, dear reader!