When Will This Cruel War Be Over?

When I was a teenager, I read this book about a girl growing up during the Civil War called “When Will This Cruel War Be Over?” Twenty years later, that phrase keeps going through my head about COVID. It has to end at some point, right?

We can’t catch Omicron or worse, the deadly Delta variant (my doctor said it’s still out there!). We just can’t. If we caught COVID, even if I didn’t end up in the hospital separated from Evan, my interpreter and the only person who knows how to set up my tobii (eye gaze computer), our care agencies would put us in quarantine. Then what would we do about nighttime care? Remember that someone must always be awake to listen for the ventilator alarm. What do people on ventilators do in these situations? 

No, we can’t catch COVID… Except Evan did. Needless to say, caregivers are avoiding us like we have the plague, which Evan does. Still, it just doesn’t seem right that he has to stay up all night and take care of me all day, especially when he’s sick. Also, what a freak thing to happen to Evan to catch COVID just after his booster became fully effective. We’re not out of the woods yet in terms of me catching it, but we’re both vaccinated, I got my booster shot before Evan – he gave me the appointment – and he’s been wearing a mask and gloves around me. He is quarantined except for my care, and we miss each other terribly. Who knew you could miss someone in the same house? I guess I shouldn’t complain too much, though. All these measures seem to be working to keep me safe.

Beyond practical concerns, there’s the fact that COVID is breaking my heart. It has separated me from my family, who live across the country, for two intolerably long periods of time. Once for a year when the pandemic first started its assault on humanity, and currently for seven months while we waited for first the Delta variant and now Omicron to die down.

When will this cruel war be over? 

* 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

 

As My Granddaddy Used to Say…

My Grandpa Stan, who spent the last 20 years of his life convinced he was dying, always said, “If you don’t have your health, you don’t have anything.”

However, my Grandpa Stan was wrong. Take it from me, someone who has lost nearly everything in terms of health. I am unable to move except for my face and my feet, and my feet only about an inch (I cherish that inch). I use an eye gaze computer to communicate because I can no longer speak. I survive now on a ventilator and feeding tube. All that remains are my mind and senses. Well, scratch that. My sense of smell is totally lost because air doesn’t move through my nose anymore, just the hole in my throat. My sense of taste exists, but the only thing that goes in my mouth is toothpaste, so taste is nearly irrelevant.

Despite all this, I know my grandpa was wrong. It would be easy for me to become bitter if I focused on what the monster called ALS has stolen from me, but I have something more important than health. I have love.

I realize “love conquers all” sounds trite, but it’s something I really do believe. Without love, my life would be unbearable. I am loved deeply by family and friends. My parents tell me how many people at their church – total strangers to me, but readers of my blog – ask about me and my husband Evan. The love that affects me most, though, comes from Evan.

“That’s 20,” he says after a flurry of kisses on the tip of my nose.

His affection gets me through the day. From scalp massages to shoulder rubs, he spoils me rotten. Sometimes he even hugs me, no small task considering I’m completely limp and unable to hug him back. Oh, what I would give to hug him!

So in this new year, hold your dear ones near, and may you be blessed with health, safety, and most of all, love

* 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

How ALS Taught Me to Hate the Holidays

I used to love the holidays. My favorite part was finding or making the perfect gift to give each person I love. My best year, I wrote mushy poetry for Evan; found the perfect mystery novel for my dad; learned how to make a dream catcher for my sister, who was having trouble sleeping; sewed matching aprons for my mom and grandma (they were always in the kitchen together); and gave my best friend, who wanted to be a tattoo artist, a photography book of tattoos from around the world. 

Post-ALS, I can’t make anything, though I still write poems for Evan, and we can’t afford to buy gifts since we live off my disability and the kindness of family, much to my shame. That’s not the reason I hate the holidays though. It’s not even because of the distance between me and my family so I can go to one of the nation’s top ALS clinics. The separation is especially difficult this time of year. No, it’s because of this dirty word – “coverage.”

It’s a rough time of year for people on ventilators and their families because we have to have someone awake at all times to listen for the ventilator alarm, and our regular overnight caregivers are often unavailable on Christmas Eve, Christmas, and New Year’s Eve. This means Evan has to stay up all night and take care of me during the day. Thank God Evan’s parents are willing to stay up and split the night with him.

The search for coverage starts in October, with my mom helping out by calling every Medicaid and private pay agency in the city again and again over several months until we find someone willing to take at least one of the nights. And God forbid it snows. I used to love the snow, especially as a teacher. Snow days were the best. Building snowmen that my dog would tackle, baking delicious vegan chocolate chip cookies… It was all wonderful. Now all snow means to me is Evan staying up nights on end because caregivers can’t drive on the icy roads (our city doesn’t salt the roads). We have a caregiver who rescued us during a snow storm last year with her big truck so Evan didn’t have to stay up two nights in a row, but she’s slowly leaving us. I am scared to think of what we will do without her.

I know my motto is hope over fear, but I’m afraid of so much right now. Caregivers leaving, snow, spasms, and so much more. However, my best friend made me a wonderful offer. She said, “I’ll hold the hope right now while you’re afraid.”

It’s nice to know my hope is somewhere safe waiting for me.

* 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 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