The Time My Husband Saved My Life

This was actually the first of three times Evan saved my life over the course of a single year. Read on to find out how my husband became my hero.

#1 My oxygen has dropped to 82, but I can’t find it in myself to care. In fact, I don’t care if I live or die. I just want to sleep. I try to think of Evan and how devastated he would be if I died, but instead I imagine him healing and finding love again.

“Hang on, sweet pea. The ambulance is coming,” he says, desperation in his voice.

I don’t remember being in the ambulance or even the emergency room. I wake up in the ICU where I learn part of my left lung has collapsed. I also learn I will be getting a tracheostomy, the surgery to put a trach in my throat and let me live on a ventilator. I thought I had more time before this life-altering surgery, but then I realize this complaint pales in comparison to the fact that I get to live, and all because Evan called 911 in time.

To hear about the other two times he saved my life, read on…

#2 One day when we are hanging out, the ventilator – the machine that breathes for me – starts making the oddest sounds. High-pitched beeping like the alert for when I am breathing too fast, musical chimes like when my lungs need suction, and the alarm for when there is a leak, but all at once.

Evan jumps up to look at my numbers and sees on the screen they are all crashing. Then the screen goes dark. Evan runs (and I mean RUNS) to our medical supply closet, grabs the travel ventilator and races back to me. He hooks it up before I even realize or feel that I am suffocating. He truly is my hero.

The third time Evan saved my life is the best, most dramatic story, so I saved it for last! Also we’re going in chronological order and this was most recent, so there’s that. But anyway, wait for it, wait for it…

#3 Each crisis almost always starts the same. My oxygen drops. This time is unique for two very important reasons, though. The first is I remain somewhat lucid, and the second goes a little something like this…

“I’m scared of going to the hospital again,” I say, a slight tremor in my voice.

“Well I’m scared because your oxygen is dropping fast,” Evan replies, rushing around the house and grabbing the things we need for a long hospital stay: fresh underwear, protein bars, and medicine the hospital pharmacy won’t be able to provide, though we know from experience that they will demand absolute control of all meds.

Evan’s admission that he is scared shakes me. I’m the one who leans on him. If he’s scared, and if he’s telling me, I am in danger. Suddenly I wish the ambulance would get here faster, but I’m unconscious before I even hear sirens.

I wake up in the emergency room feeling amazing. Upon seeing my eyes open, Evan springs up from the tiny plastic chair where he’s furiously texting (my mom, I assume based on how these crises usually go). He hurries over to my hospital bed and wastes no time getting my tobii eye gaze computer set up so I can speak.

“I feel so much better!” I tell him with a smile.

“That’s because you’re on 100% oxygen Rachel,” he says gently. “Your oxygen was in the fifties.”

Before I can really start worrying about brain damage and other long term effects, the doctor enters.

“What we have here’s a Whiteout,” he pauses like he expects us to know what this means. Seeing only confusion and worry, he goes on to explain. “Lungs are supposed to be black on an x-ray, but her left lung was completely white. It’s not functioning at all because it is totally filled with fluid. This is obviously very dangerous.”

“That’s where part of her lung collapsed last year,” Evan supplies, scared but trying to be helpful all the same.

“We saw that,” the doctor says, his patience wearing thin.

“But she’s safe now, right?” Evan asks.

The doctor hesitates, then says, “It’s a good thing you bought her in when you did.” With this cryptic, unsettling answer, he leaves.

As terrified as I am, I realize this could have been much, much worse, probably fatal. However, when minutes counted, Evan called for help, saving my life.

* I can’t post comments or reply to them, but I can read them and I love them. Keep writing!

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 Rachel Doboga Campaign at 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. From your PayPal account you can donate to FriendsofRachelDoboga@gmail.com

Comfortably Numb

“There is no pain… I have become comfortably numb.” – Pink Floyd

“It will work because it has to. It will work because it has to. It will work because it has to.”

I chant this over and over in my head until my body seizes up again. Then I pray to everyone who  might be up there.

“God, Goddess, and Jesus Christ, make it stop! “

“This is killing me!” Evan says, never stopping massaging my limbs even though his hands must be tired.

Finally the spasms abate, so I go back to chanting. “The medicine will work because it has to. It will work because it has to. It will work because it has to.”

Another round of spasms. More prayers. An hour later, the Valium and muscle relaxer slow the spasms until I become comfortably numb and pass out.

I have been dealing with severe muscle spasms for about four years. For the last two years, through surgery and finding the right combination of medicine (the game changer was actually a heart medicine, if you can believe it) the spasms have been mostly under control with the occasional flare up. However, this flare is lasting longer than usual, and the spasms are agony. Sometimes the pain is so bad it makes me nauseous. I am scared because I have almost reached the max dose of Baclofen through my pump. The surgery was to put a pump along my rib cage that is refilled every three months with Baclofen, the strongest medicine out there for spasms. The pump has a small tube that snakes around my torso under my skin and goes directly into my spinal cord where it delivers the Baclofen. I have long scars along my spine and rib cage, battle wounds from my war on spasms.

If the Baclofen is failing, what about the muscle relaxer, Valium, and boatload of preventative medications I am on? I recently had an appointment with my neurologist, and it is now my understanding that most of these medications – my army of defense against spasms – fit into a class of drug called benzodiazepenes.  Evidently, the human body eventually gets used to these drugs and the effect wears off. That’s what is happening with my muscle relaxer, and I can’t help but wonder if this will happen with all my other medications. The thought terrifies me. I just want to be comfortably numb. 

* I can’t post comments or reply to them, but I can read them and I love them. Keep writing!

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 Rachel Doboga Campaign at 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. From your PayPal account you can donate to FriendsofRachelDoboga@gmail.com

The Pandemic is a Taste of ALS

Full disclosure: my therapist came up with this idea, but it’s brilliant, so I’m stealing it. Don’t worry, I’m a thief with morals. I will give him credit along the way.

The beginning of COVID was so chaotic, it’s hard to say what came first. Was it the rush on hand sanitizer and toilet paper, the masks, or the dreaded quarantines?

I realize this is a controversial statement right now, but as someone with a compromised immune system, I am all for masks and quarantines. However, that doesn’t mean the isolation of quarantines is any easier to deal with. I know one woman who, after being forced to work from home for several months, started dressing up as though she was going to the office. We all cope with the isolation the best we can.

The isolation ALS has caused is crippling. It has taken my career and interactions with co-workers and students. How can I teach middle school being nonverbal and totally immobile? I miss the little things: chatting with other teachers about the upcoming school play while checking my mail in the lounge, grading papers together, and listening to my students’ deep breathing during my guided meditations.

Then there’s the loss of church because I sleep through services. I especially miss how people of all religions came to my church. We were all together in one place (we attend/ed a Unitarian Universalist church if you’re curious). I sleep 18 – 20 hours a day, so I also miss support group meetings. In fact, I don’t know a single other person living with ALS.

Of course, all this affects Evan because where I go, he goes. He also misses services and support group meetings because he has to stay home and watch the ventilator – the machine that breathes for me – and give me food and medicine through my feeding tube while I sleep. He had to quit a job he loved just to take care of me. And of course, no more trivia nights at the local bar with his friends. He’s a history buff, so he was a priceless member of his team. No, all we have now is each other. Thank God his parents live close by. I am scared to think of what we will one day do without them, but God willing, that will be a long, long time away.

Yes, my therapist was right. Both quarantines and the isolation of ALS are terrible. Both wreck our relationships and mental health. However, there is one key difference between the isolation of quarantines and ALS. Quarantines end, but ALS is forever.

* I can’t post comments or reply to them, but I can read them and I love them. Keep writing!

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 Rachel Doboga Campaign at 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. From your PayPal account you can donate to FriendsofRachelDoboga@gmail.com

Thank You!

Thank you to my donors! A special thanks to my anonymous donors since we can’t send them a thank you note. So far, we’ve raised about $11,000, bringing our Help Hope Live total up to over $14,000! We found a brilliant nurse who knows practically everything about ventilators, and Evan is getting the respite he so desperately needs. During his weekly six hours off duty, he has gone to a socially-distanced movie theater to watch a movie he’s been dying to see, had lunch with his dad, and gone hiking. He’s even planning a short canoe trip! We’re holding off on the much-needed haircut until the delta variant calms down. His depression has lifted to the point where he’s playing guitar again, which I love to see! I can’t tell you how much this respite means to us. We plan all week for what Evan will do on his mini vacation Fridays when my beloved nurse comes.

You can still donate as this fundraiser is ongoing in order to ensure my care and Evan’s respite last longer. Make a tax-deductible contribution to the Rachel Doboga Campaign! Follow this link:  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. From your PayPal account you can donate to FriendsofRachelDoboga@gmail.com

* I can’t post comments or reply to them, but I can read them and I love them. Keep writing!

Health Update: Good News!

I have some good health news. I may not be incontinent after all. I mentioned the issues I have been having to my primary care, and she said based on the consistency, it seems like a dietary problem. Maybe not enough fiber. She’s connecting me with a nutritionist soon. I am trying not to get my hopes up, but this could be big for me.

I also have a new eating method which is pretty cool. The food goes through a little machine that spaces out the food over 12 – 16 hours so I don’t get too full. This way I can tolerate all my meals so I am not literally starving (I have lost forty pounds in the last year). Of course, Evan had the idea for this and made it happen in two days. He truly is my hero.

I am still anxious, but I think I am managing it better. I have stopped micromanaging Evan which is a good sign, as well as a relief to the poor guy. I do have a few new coping techniques. I meditate, and when that doesn’t work I distract myself by spelling complex sentences backwards. When I can’t sleep, at Evan’s suggestion I alphabetize the works of my favorite writers – Dickens, Shakespeare, and Nabokov – then do it backwards. However, my best friend advised me that the anxiety will go up and down, which was wise because I do feel it rising from my worries about Evan’s health, happiness, and potential burnout. I love him more than my own life, and watching him suffer is nearly unbearable. The good news is that, thanks to the generosity of the donors who have contributed to the fundraiser, we are able to afford for a nurse to come out for six hours a week to take care of me while he benefits from some time off duty. You can still donate as this fundraiser is ongoing to ensure my care and Evan’s respite last longer. Make a tax-deductible contribution at https://helphopelive.org/campaign/16990/

* I can’t post comments or reply to them, but I can read them and I love them. Keep writing!

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 Rachel Doboga Campaign at 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 at https://paypal.me/pools/c/8oeQxv9gau

Oops!

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?