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At 9:30 a.m., this was how my day kicked into high gear. I decided to go to O’Leary’s because yesterday I tried going to another place of business that does oil changes and inspections. It was super busy, lots of people close together, none wearing masks. Leaving honored my promise to Tom to be careful in my outings.

I pulled into O’Leary’s and it all was good. Hardly anyone there. In fact only the people who worked there were there. Kate followed me so I could leave the car and get it later. Only it didn’t work out that way. I made a slightly too wide turn into the parking spot on wet pavement. My wheel caught the concrete retaining wall, read that as the wheel went over the edge and wasn’t budging. The retaining wall is flush with the parking lot.

When I realized I was stuck I broke out in a sweat. I went through all of the things in my memory that Tom has taught me about these kinds of non-magical moments when the world feels more against than for a person. He’s not a panic-driven person. After decades together he has imbued that in me as well. Take a pause when you need it and take it again and again when you are in a difficult situation so I do and did.

Kate parked her car, very well I might add, all tires on the ground. The three men in the store came out to offer their thoughts. Still, I didn’t panic or worry when they had no workable solution. Neither Kate nor I had our phones. Who does that, right? I guess we do. I also had a pancake for breakfast. It seemed rather big of me to do that on a Wednesday especially while I am still in the weight loss game but it held me over for the 2 hours of trickery involved in getting all of my wheels on the ground so it was a good decision. By then I was neutral on decisions. One bad one, i.e. no phone, and one good one, i.e. a pancake.

We called Triple AAA. Actually the manager did and had to speak for me since I wouldn’t use his phone. I had a mask on but he didn’t, neither did his two mechanics. I felt like I was rolling the COVID-19 disease dice being in there. The tow driver, no mask, too close to me, touching my keys, but, literally, with moist eyes promised me he would do his best to not hurt my car yet he couldn’t guarantee it. I couldn’t watch it. I love my car. It was a present I bought myself to drive something other than a handicap accessible van, to not stand out but blend in with the crowd once in a while. As you can see I am not very good at achieving the ‘not standing out’ in a crowd thing.

With no phone to bury myself in and no Kate who went home to conference with her students’ parents, I was left to TV. Did you know there was a game show called “Common Knowledge”? Me either. Some dude from the group NSYNC is the host. I had no idea. When Kate came back with my phone she enlightened me. It isn’t a terrible game show and seemed better than watching my car that may or may not be rescued. I loved that the tow truck occluded my view. The car, not a scratch! I sent them pizza for lunch as a thank you.

Earlier this week wasn’t so hot either. All the smoker detectors must be replaced including the one on the 12 ft ceiling. Again, Kate saves the day. Were it not for her that sucker would still be chirping. Tom can’t climb a ladder. Technically, I could but I’d probably still be up there. Monocular vision and heights are not friends. We thought we could call the fire department, non-emergent, but it was a lost cause getting someone to actually answer the non-emergency line. In the meantime, the dogs were freaked out.

When we settled back down Tom needed help adjusting the chin strap for his breathing machine. He woke up hypoxic this morning from the loose-fitting. Wouldn’t you know I broke it? For the third time, Kate saved us. She sewed it back on. Because the obstructionist VA respiratory manager finally retired the new guy stepped up and put two in the mail to Tom pronto. It really can be that easy at the VA with can-do people on board.

There are some slivers of silver linings in all of this. For one Tom is still here for me even if he is not physically doing these things with me but giving me the space to cry about them when I come home to him. And also tomorrow is Thursday which brings us one day closer to the end of the week. #ALSLife #ALSawareness

 

 

“Thinking Through VA Benefits and VA Care – A Resource for Veterans with ALS & Their Caregivers” is a project I have been dedicated to for the past two years. The goal is to help our veterans with ALS, and their caregivers, to avoid some of the mistakes we have made; to understand how to navigate the VA system as efficiently as possible. ALS is a treacherous disease. The less time we spend on VA issues the more time we can spend living our lives.

The e edition is available on Amazon. It is $2.99 or free if you participate in the unlimited Kindle program.

The print edition is also available on Amazon. It is $10.00.

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A long time ago when I became a caregiver, it did not occur to me that I was one or would be one for the rest of my life. At thirty-three years old that’s a lot to consume. In the beginning, each new day was all I could focus on. Get through today. Don’t think about tomorrow. At the time I knew someone, about my age, who was caring for her husband. She did not see me.

At the end of each day when I lay in bed all of the worries looped through my mind. There were concerns without answers. Where would I get the money to put food on the table, to keep the roof over our heads, to pay the enormous health insurance premium now that he wasn’t working anymore? If we did not have insurance how could he continue to get care? Did I even want to get up in the mornings anymore? Economically I was woefully unprepared to take care of our family. No one could see me.

Sad, scared, barely surviving, there was no one to see the ambiguous grief crushing my heart.

Days and nights, nights and days, blended into each other for months. The first year led to the second, the second year to the third and so on. As I emerged from the fog of a life dismantled, I was hired to work at the local hospital at a low-level job. Getting my foot in the door was huge. It boosted my confidence. It gave me hope. Eventually, I worked for someone who understood I was a caregiver even if I still did not see it. She could see me.

Someone seeing me shifted my perception of myself. I was less alone. I was less lonesome. I began to see I could do more than survive, I could thrive in the face of this adversity. Seeing me mattered.

In whatever way caregiving comes to you it’s an enormous life challenge. We hold another person’s life in our hands every day. Caregiving needs come in all shapes and sizes, from providing supervision to paying bills to total care. Some days the challenge is daunting, some days it’s not. Some days it’s incredibly rewarding, some days it is not. Most days are somewhere in the middle.

Wherever you are in this caregiver life I see you.

The photograph was taken January 18, 2020, at Federal Point, Ft. Fisher, North Carolina. This is a self-assigned photograph for an ongoing documentary of Thomas J. Ward. Tom is a veteran of the Marine Corps, 1972-1975. In June 2010 he was diagnosed with service-connected Amyotrophic Lateral Sclerosis, ALS. I have been photographing Tom’s painting and the progression of the disease since diagnosis for the purpose of a documentary exhibit to inspire others to improvise, adapt, and overcome what seems impossible at first look, but is in fact, not impossible at all.

Tom was painting long before he was diagnosed with ALS. Living well with ALS takes daily courage and commitment. ALS is an unremitting enemy. In the end, it doesn’t lose, it takes the body, but it will never win his Tom’s soul. Every single day he wakes up he embraces fully. He honors all of us with his focus to give his best. He never gives in. He never gives up.

Tom paints despite the difficulties the disease imposes. In this photograph, he is opening a 37-milliliter tube of paint. It’s a struggle. His fine motor movements are compromised from the disease. His left hand is nearly paralyzed. If he puts down his paintbrush, he will have to pick it up again after he finally gets the tube open. If he puts it down, he may not be able to pick it back up. When he paints, he continuously improvises because every time he paints, he faces new progression with the disease. He adapts so he can overcome the obstacles.

Some people would give up painting if they confronted the challenges Tom does. Giving up is not an option for him.

The Marine Corps values are embedded in this Marine. It is these values that get him out of bed every single day with a purpose. He embodies the essence of the United States Marine Corps with how he conducts his life despite the enemy that lives within him.

Pinky is one of our three dogs. She is a mini-dachshund, a black and white dapple. We accepted Pinky and her sister from another mother, Mimi when our son and his wife divorced. They called them ‘the girls’ and we did, and do, the same. Mimi is a classic red mini-dachshund. She’s smaller than Pinky by a few pounds and shorter by a few inches. They were both bred and born in Germany. My son and his wife bought them in Germany when they were stationed there.

Our third one is really Tom’s dog. Tom’s the husband. Maddie is his service dog. She is a yellow labrador retriever. For the most part, they do not behave like a pack, simply because Tom and Maddie are so well bonded. The girls hang with me most of the time.

Mimi kind of dances to her own tune. She always loves a visitor. Runs around them in circles flips on her back, and pees upside down. She does this nearly 100% of the time. She prefers to spend the day under blankets. She’s friendly until she’s not. You can have her on your lap for a while, when you put her on the ground she snarls pretty good. When a fight ensues with the girls, it’s generally Mimi that starts it.

Pinky is the youngest of the crew. She will be seven-years-old on January 17th. She was sick this summer, diagnosed with an autoimmune disease. She had cyst-like bumps popping out of her skin, a fever and was generally not well. I thought she wasn’t going to make it. She rallied though and came back to her jovial, mischevious self. One of her favorite tricks is jumping on the kitchen chair and then the table when we aren’t looking. She’s exceptionally social. She doesn’t have a mean streak in her at all. She’s more of a party girl.

Pinky likes to pick up a bone almost as long as herself and bring it in my office when I’m working. If I get up and go to another room she follows, bringing her bone. Often I’m going in and out of a room, back to my office, moving quickly. She follows anyway. I’m her human.

This last week she developed acute pancreatitis. She’s super sick and doesn’t seem to be getting better despite fantastic veterinarian care. She spends the day at the vet getting treatments and comes home at night. I like that they let me bring her home so I love on her.

This morning she’d seemed markedly worse than when we went to bed. Her breathing was troubling her and she was in more pain than she’d been in despite having the pain medication I gave her. I wrapped her in a blanket and sat on the front porch with her on my lap with my coffee and camera close by. I would learn later on when I took her back to the vet that she had a 103 temperature. While we were on the porch all I knew was how much worse she was and wondered if she was going to beat this.

From the front porch, I can see the colors of the sunrise. I can’t see the horizon but I can see when the sky changes colors in the early morning. We are approximately one mile from the Intracoastal Waterway.  It’s super nice when you can actually be at the waters edge, however, any day you can sit on your porch and see what I do almost daily you’ve got nothing to complain about.

I was supposed to run a 5k this morning. It’s part of my get healthy, lose weight initiative that I’ve had going on since May 2019. I was dressed and ready when I realized I couldn’t leave her and the care she needed. I couldn’t leave her to Tom. She’s my pup and I’m her person.

It was lightly raining at my house yet the sun wasn’t having it. The sky was opening up to beautiful colors over the Intracoastal. Pinky was snuggled on my lap, coffee was delicious and I got lost in photographing the sunrise from my cozy chair on the porch. Photography brings me to complete mindfulness almost instantly. It didn’t make Pinky physically better but ya know I feel like she felt the calmness that mindfulness brings to people, to me, and how loved she is.

This mornings sky: