Of Richards, Generators, Love Seats and Respites

Hi Friends. It’s been a few months since I’ve sent along an update and there are multiple reasons for this. One, I’m tired. Tired in a way that’s becoming increasingly difficult to explain, because it transcends bodily fatigue. I’m weary in my bones, in my soul.

Two, while I really, really, really (if I say it thrice will it come to be?) wanted to post something positive, uplifting, hopeful, the truth is that ALS doesn’t allow that. Ever. Pointedly, several months ago I read a memoir written by an older lady around a decade ago, whose husband also succumbed to this demon of a disease. Before purchasing the Kindle version, I read the reviews, and one struck me: “It’s all doom and gloom,” one reviewer wrote. A rage grew in my belly and took an express elevator upwards. I was to write back, “What the hell did you think when you read the letters A, L and S you dimwit?!” The obtuse critique infuriated me, but it also stifled me. Do you all really want to know how bad this is? Probably not. And I get it; we both do. I don’t have many glittering words of duck-and-bunny frivolity. It’s been a difficult few months, but I’m writing this anyway.

Richard

So last March (and I cannot remember if I wrote of this before, and while I could go look, I’m too tired to do so, so I beg your patience), we finally found a Home Health Aid. He showed up one morning without warning. I answered the door wondering who this long-haired and hippy-like dude was, standing there with an expectant smile on his face. Well, angels come in so many guises, and if we don’t offer hospitality, we might come to rue the day. Thankfully, (after sending him away), I chased after him to find out more details and sure enough, he was here to help. Richard was like those elves who come into your house in the middle of the night and cobble all of your shoes. You awake the next morning feeling like you can face the world because something remarkable has happened. There are a couple of people on David’s team whom I’ve felt bestow on you the unspoken assurance of “Don’t worry, it’s all going to be OK.” Richard was one of those folks.

Richard has the most loving heart, shared our love for fantasy and science fiction, and my love of Tears for Fears and the Violent Femmes, which is to say he could occupy both of us with conversation that took us away from the stresses and fears of the day. As for care-taking, I trusted him implicitly, and I learned so much from him. He helped get me past my trepidation of using the Lift, and I taught him how to do a mean Cough Assist. His presence allowed me to go outside of our house and into the world knowing with certainty that David was well cared for. Alas, though, Richard has a family of his own, and his family moved to Indiana in mid-June. When Richard left, David and I were both crying. He wasn’t just a caretaker, he is our friend. And while we wish him the very best, we both also miss him everyday. In truth, I should write one stand-alone entry here about Richard alone, because he embodies the core of what it means to care for, and to take care of.

Generators & Love Seats

One day in late June, I woke up with the house dropping into silence. This could mean only thing: power outage. I jumped out of bed to watch David’s bed begin to deflate. He uses an air mattress that helps with circulation, muscular support and skin health, and it was sinking before my eyes! These eyes grew huge and round as I raced to find a solution to get him supported. Power chair!, I thought. Scrambling, I got David into the sling and using the Lift, into the living room to place him in the power chair. It’s not a fast endeavor. It requires maneuvering and adjusting, all while David is fighting deep discomfort, dangling in his sling. I admit that I was crying the entire time. Images kept flashing before me of him aspirating because of his posture, etc. As seems to happen, the power came back on as soon as he was in his power chair. But would it stay on? I happened to glance out the window and saw the energy repair folks driving away from the poles along our street. The odds were good that it was repaired and so I got him back in his now inflated bed. No harm, no foul, I suppose, but it did put fear in my heart. Luckily, the VA responded immediately by sending a very fancy generator. Like a wish from a genie in a bottle, it just appeared one day, perched on its pallet, waiting to be of service.

Two weeks later, as instantaneously as it appeared, it disappeared in the same way. Stolen. Too heavy for me to move by myself, it had sat there, hidden behind our big SUV. The moment I had to move the car though, was the moment someone decided it was their right to come onto our property and take away a safety net.

That afternoon, I found myself sitting in our living room alone, on a couch we’d bought when we first moved to Washington. It was creme-colored and it had these cool rivets along the edges. It wasn’t expensive, but it was one of the first pieces of furniture we’d chosen together. I sat there crying, feeling the violation of something so important being stolen. I felt a kind of futility that curled me into a ball and made me pound fists into the cushions. Why? How is it, I thought, that someone lives their life in such a way to justify taking what is not theirs, taking from someone who has given so much, given everything? I felt defeated. Defeated by a burglary, defeated by this disease, defeated in my body that felt closer to 90 than 56. At end, I filed a police report (that has been ignored) and the with that, the VA is replacing the generator. I’ve had no choice but to choose the belief that whomever felt compelled to steal, needed it more than we did. Ultimately, we lost nothing. To remain with the violation is to remain in the state of curling into that couch. I had to get rid of it. It was too big for the space of living in the Living Room.

I have no graceful transition into the sub-heading of Love Seat. I have no energy to sit here and conceive of some witty way of linking the two events: we got rid of that couch and our new leather love seat arrived today. Here’s the thing about the couch. I’ve become obsessed with getting our house decorated and “set.” New book shelves, this leather love seat, a small armoire, a new TV console . . . all of these things picked out by David and I. They are things I will have for my lifetime, and I’m driven to create our home . . . why? David doesn’t use them. I do. David rarely sees them. I do. But I want them here, when he’s here, because . . . why? Because I want to hold onto him? I want to be strong enough to say to him, when the time comes, “You can go if you need to go.” But between you and I, I don’t want him to go. I want him to stay. That’s the rock. The hard place is seeing him suffer. And yes things are getting more and more difficult for him. We cry more than we laugh now. We’re facing things, but i won’t pretend that it’s not the most difficult thing either of us has ever faced. He is dying, and bits of my self are dying along with him. And in this seat, this leather he chose, I am always loved.

Respite

The burglary of the generator was a wake-up call of sorts. My marriage is changing. Is it ending? Sometimes it feels that way. Sometimes we bicker with one another, and it’s always because we’re frightened. We’re grasping. We’re holding on. David is trying his best. I’m trying my best. And I’m realizing I cannot, no matter how hard I try, no matter how intelligent I can be, no matter how I spend hours trying to conceive of some untried means to cure him, I cannot save his life. And he will leave; and I will be left to contend with that particular kind of solitude, and I am beginning to feel empty because of it. The face I wear outside, through text, or facebook, probably, maybe, for the most part, might appear brave. I am not brave. My care for him is a way of hiding from the black hole in my core. We’ve not had enough time. We were meant to move to Europe. We were meant to write a book together. David was meant to finish building his airplane. We were meant to go skiing, buy a boat, go to Marrakesh, to Switzerland, plant gardens and grow old. And we are, both of us, in our ways, heartbroken.

In a couple of days, I will take David to a top-notch rehab facility, and I will begin 7 days of respite. That’s a funny word, “respite”. Nowhere in its history does it mean physical rest. More accurately it means a reflective, liminal point of time, a delay. This term, “delay,” it’s heavy with meaning, and fear. Yet rest is exactly what this intention holds. Through the VA’s Caretake Support Program, which I was approved for in May, I am given 30 days of respite a year. This means that David can enter a care facility, and I can rest. Now we’ve tried this before. Only three weeks ago in fact. David was there for 5 hours, at which point I took him home. This too deserves a post in itself. Let me just say that there was no way I was going to leave him in that place. For the entire week leading up to that day, I grappled with feelings of guilt, or having failed him in some way. Yet my fatigue has reached critical mass. My stress threatens my own health. I need to sleep. I need to breathe knowing he’s OK. I need to know . . . that he’s OK!

Friends, if you could, a favor? Write to him, email him, next week, this week, frequently and often. Just say hi. He may or may not write back. It’s tiring for him, and a lot of that energy still goes to the writing of his book. But keep writing, OK? Send some funny or nice photos, tell stories. We’ll appreciate it. I WILL APPRECIATE IT. Because it’s getting hard, and it’s getting sad, and it’s getting heartbreaking. And love is ultimately, the most healing force, and boy, we could sure use some directed our way.