In my previous post, I said my Aunt Cathy started this nonprofit, but I want to clarify that she set up this fund through Help Hope Live to facilitate this tax-deductible fundraising campaign. Thanks Aunt Cathy! Now what are you waiting for? Go read my last post, “Exciting News!”

Exciting News!

My creative, brilliant Aunt Cathy created a nonprofit to raise funds for my care, meaning going forward, all donations to my care through the nonprofit are TAX-DEDUCTIBLE! Please check out the nonprofit Rachel Doboga Campaign website at https://helphopelive.org/campaign/16990/

This website is very special to me, not only because one of my role models worked so tirelessly on it, but because it features actual footage of me cooking with my family and speaking. I can’t believe I was once able to do these things. Forgetting is so easy. However, in addition to including precious videos of my past, the website narrates how I lived before the monster called ALS took over my body, my life. Of course, it also explains how I live now, which I forget as well because I really do think people can get used to anything. I cherish this website for reminding me of invaluable truths.

I also cherish this website for its purpose – raising money for my care. Evan provides almost every hour of my care because in my state, no one except a nurse or family member can provide ventilator care. In December when my caregiver abandoned us and Evan was working 16 hour days to meet my needs, I called on you for respite care for him. Your generosity provided 6 months of naps, watching movies, sometimes even playing guitar when his spirits were high enough – but always with the baby monitor whose other end is attached to, you guessed it, my ventilator.

We’re in very serious danger right now of caregiver burnout, which is when a person has worked so hard for so long without a true break that they are unable to function as a caregiver. Evan has the will and the skills to be a fantastic caregiver for the rest of my life, but his health is degrading now. He needs more self-care, more true respite when he’s not on call. My husband desperately needs a haircut. He needs to walk the dogs, leave the house, something he hasn’t done in MONTHS. For this to happen, I need a lot of expensive, specialized care. Nursing care on top of overnight care will run $4500 per month, and that’s just for 6 hours of nursing care / respite per week. I am asking that we raise $25,000 to pay into my husband’s health and prevent the catastrophe that caregiver burnout would be.

$25,000 seems like an impossible amount, and maybe it is, but I hope you understand that I have to ask for 6 months of only 6 hours per week of nursing care for me and respite for Evan. That will last us until almost the new year. We are of course grateful for any tax-deductible contribution you are able to make. You can make your donation to my care and Evan’s respite at the nonprofit Rachel Doboga Campaign website, https://helphopelive.org/campaign/16990/

NOTE: If donating through PayPal is more convenient for you, you can still contribute that way. Just be aware your gift won’t be tax-deductible. You can donate via PayPal to Friends of Rachel at https://paypal.me/pools/c/8oeQxv9gau

A Letter from My Mother on the Anniversary of My ALS Diagnosis

I screamed when I heard that my 28 year old daughter was diagnosed with ALS. Looking back, I knew something was very wrong when she dragged her leg as we walked through the parking lot of her apartment complex. A mother always knows, right? But I never guessed this.

The night that the phone call came there was no sleeping. The tears would not stop. The next morning, family was notified via texts, phone calls, emails. In between, was research and more tears. I immediately ordered books on ALS. What is this monster of a disease that has no cure? Can this be real? Surely there was a mistake in the diagnosis. Not my baby, not my daughter.

Rachel is 34 years old now. She is married to Evan, a kind, loving, supportive man who has stayed by her side and is truly the best caregiver. They have 2 dogs, Malka and Pickle. Rachel has always maintained that if she has her books, dogs and husband she will be okay. Rachel was an English teacher and loved her job and students. She had to quit her job after just 3 years as a teacher because of ALS. She and her husband have been robbed of starting a family and of growing old together. She is going in to her 6th year with this disease when the average life expectancy is 2-5 years. She survives on a ventilator now.

Now, all these years later, I don’t know if prayer works or if there is a God. After Rachel’s diagnosis, I strongly believed there would be a cure in her lifetime. Once, a priest said to pray the problem, not the answer. I tried that. Nothing. Then I decided I would pray for what I wanted, for what is needed. Nothing. Six years later I am not so sure about prayer, but I live with hope.

*I can’t post comments or reply to them, but I can read them and I love them. For this post, I will be sure to share them all with my mom.

If you have fond memories of Rachel as a teacher in her life before ALS, or if a post on this blog has ever moved you, please consider making a tax-deductible contribution to Rachel’s care through the new nonprofit, Rachel Doboga Campaign at https://helphopelive.org/campaign/16990/

Losing Control

“We have to talk,” Evan says in that scary way, the way a person uses right before they say they have an addiction or they’ve emptied your savings account.
“What is it?” I ask, heart racing.
“Have you noticed that it’s been taking longer for me to clean you up on the toilet?”
“Yes,” I say cautiously.
“That’s because there’s already stuff there. You’re becoming incontinent sweetheart,” he says gently.

Incontinence is the word of the day. For those of you who don’t know what this means, count yourselves lucky. I will break it down for you. Incontinence means I can no longer control my bowels, so I leave poop wherever I sit or lay. God knows what would happen if I could walk.

It’s mostly at night, and it’s a small amount, but I still wake up laying in it. It has also been happening in the afternoon now. I dread having accidents. I feel ashamed and guilty that Evan has to clean me, though he says I shouldn’t feel either of these things. He says he doesn’t mind because he loves me, so it’s not gross to him. He says I am still beautiful and sexy to him, though I don’t see how this is possible. However, my best friend Melissa always tells me to reverse the situation. If (God forbid) the situation was reversed, wouldn’t I still think he was still the sexiest, most handsome man on earth? I answer with a resounding yes.
Still, it will only get worse. I know this, but I can’t think about it without feeling nauseous.

I’m afraid friends will leave me because I smell. I am scared of getting a UTI or a painful rash. Evan says I should know that he takes good enough care of me to prevent these things, but some of them are inevitable. I never thought I’d be in diapers in my mid-thirties.

I know my motto is hope over fear, but this a hopeless situation, and I am terrified.

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.