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?

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:
https://paypal.me/pools/c/8oeQxv9gau