Every day I see this guy give it all he’s got. He is incredibly inspiring.

So much so, I embarked on a health and fitness journey two years ago today. I was way past the category of a healthy BMI. In fact, I was considered obese. At the rate I was going I would end up an ineffective caregiver for Tom due to my poor health.

His goal has always been to kick the shit out of ALS. Boy, hasn’t he been crushing that goal? I wanted to be there for him and so I made some health goals of my own. One was to reach a healthy BMI and today I have done that.


The month of May is ALS Awareness Month. It is also the month  Military Caregiver are recognized. Veterans are twice as likely to get ALS than non-veterans. Tom is a veteran of the Marine Corps. He served from 1972-1975. He was diagnosed with ALS on June 21, 2010. He has a slowly progressive variant of the disease. He is service-connected for ALS and I am his caregiver. #EndALS

These are two ALS blogs I follow. I love both of these bloggers so very much.

Gill is a veteran living with ALS. He doesn’t shy away from the truths he lives with each and every single day. ALS has a formidable enemy in Gill. Gill is doing his damndest to prevent ALS from winning: Gill’s blog

Lara Garey is a caregiver of a veteran living with ALS. She is armed to the teeth with grit and determination. Under the armor are all of her feels. She is one of a very few of my best friends. When it comes to ALS caregiving we are one another’s sounding board, venting lifeline, and are transparent like glass: Tom’s Troops




She was an old lady. The oldest one I’d ever known. Her hands, in her lap, the skin was thin. Her blue veins were visible. It was as if I could see inside her skin. When I touched her hands, they were cold, always cold. She would let me gently pinch her skin and pull it up. We’d watch to see how long it would take to flatten out again, and giggle. She’d pat my youthful hands and smile. She was just a few years older than I am now. She was my favorite person and the only grandparent I’d ever known.

Her name was Jessica Constance Grubert Marten. Gram to me and her grands. I know her full name not because she was so much a woman before her time that she included them as part of her identity but because she was a storyteller. She always had a story to spin. She liked to tell me what her full name was and where she came from. I’d sit with her when she had her lunch of spreadable liver on rye toast and a cup of decaffeinated coffee, dark. She had beautiful, soft blue eyes with a twinkle at the ready. Her eyes were super large with her glasses on. It would be years before I learned she had failed cataract surgery so her glasses had a strong prescription in them. She would make eye contact just before she tipped into a story. A favorite of mine was one she shared dozens of times that never got old. When she was a young girl, she loved to roller skate on the streets of her Brooklyn neighborhood. If by chance the iceman came by for deliveries she and her friends would hide in an alley when they saw him coming from down the street. As soon as he passed where they were hiding, they would skate out of the alley and hold onto the back of the ice cart. They’d hang for a bit and let go for the fun of it. She’d laugh when she told this story. She had a great laugh. Her shoulders would shake and she would say, using her favorite name for me, “Maresy Dotes it was such fun”.

She was a lover of reading, a poet, and a piemaker. She was kind, funny, caring, and strong. She believed humans were good, most of the time. She believed in forgiveness. A whole lifetime ago and she’s never forgotten. I am different than she thought I would be, not better, not worse, just different. She would have loved the woman I became. I took her strength and reshaped it applying it in my life as needed.

She is one woman among so many millions before, during, and after her time on this Earth. She didn’t go to college or own a business or march for anyone’s rights or try to change the world for others outside of her field of vision. Her influence on my life was profound and positive, and so loving. She was comfortable in her own skin. She is, and always will be, the personification of a good human who happened to be a woman. She was, and always will be, my lady.

This isn’t Tom and I robustly walking together on the beach in our senior years. It never will be us. It can’t ever be us. We will not retire together. When I retire it will be because he has died. We will never travel together to all of the places I wanted to see. We will never bask in the glow of our golden years. We skipped over those years sooner than we should have and felt the gold in golden for such a brief period it barely registers in my memory.

Amyotrophic Lateral Sclerosis (ALS) is a demanding disease for the person who has it and the person who cares for them. It is uniformly fatal. The longer a person has it the more challenging the care becomes. Where there were once two independent lives, moving and grooving to their own inner music, they eventually become one. One person having to depend completely on another to care for them, for every single bodily need. One person caring completely for another, for every single bodily need, including their own. Two become one.

I wouldn’t wish our life with ALS on anyone, even those I don’t care for. We have what we have and no amount of wishing will change it. I also wouldn’t trade my life for the world. Do I miss not walking on the beach with Tom? Absolutely, 100%. A thousand years ago he proposed to me on a Long Island beach, while we walked hand-in-hand in the sand. The last time we walked on the beach was a few days ago and it was baby steps for Tom. He held the handrail with one hand and I held the other arm to help keep him on track. We covered 20 steps over many minutes. It was his wish to do so while he still could. Instead of Tom doing the heavy lifting to get us from one place to another like he used to it was me who did it for him. I miss that part of us. I miss his contributions in our life. He was really good at participating. Though we will not have a retirement life together, we do not have regrets of the life we had prior to ALS or the life we have now. The most important thing is we redefine what a life well lived means to us each and every day that we still have together.


Over it.  Over not feeling healthy. Over being overweight. I woke up one morning in early May 2019 and stepped on the scale. It was an icky number and not a surprising one. I put off weighing myself because I knew I wouldn’t like it. I was right. I didn’t like it. I was at least 60 lbs too much. I say at least because it seemed more achievable than, say 70 lbs. Even that wouldn’t get me to what I weighed in my early 20’s. I’d have to lose 80 lbs to meet that goal. To lose 70 or 80 lbs, I don’t know, seemed aggressive with an outcome I might not like in terms of being too frail, and too wrinkly. I set my sights on 60-ish lbs, give or take.

When I started on this health-kick journey I was 59 years old. I was a former runner turned walker. It felt impossible to run being so overweight. The more weight I gained over the years the less effective exercise was for me. The joints in my ankles and bones in my feet hurt. The more I hurt the less I ran until I stopped altogether.

Exercise has always helped my peace of mind. As the ability to run faded over the years I introduced morning walks. Walking in the early morning is delicious. We live close to the beach. The morning sky often fills my soul. It wasn’t a terrible alternative to running. Exercise in almost any form is good for us. It’s good for our heart, digestion, and mindset. For me, it wasn’t a dependable way to control my weight as I aged. It was what I was eating, and how much I was eating, that was the problem.

I was opposed to dieting and still am. Dieting seems like a scam. It seems like something one goes on and one goes off and on and off. One will cheat on the diet, then feel terrible about themselves. When someone meets their goal they think they are done and then go back to their same eating habits. They gain the weight back, maybe even more than when they first started the diet they were just on. Some diets have maintenance plans and that seems to be a struggle to stay on as well. I, therefore, rejected the concept of dieting but did nothing about my weight gain until 22 months ago.

My only experience with a diet plan was when I was a kid. My mother became a Weight Watcher lecturer when I was 5 years old. Sometimes I would go to meetings with her. I would sit at the back table where people checked in. Their names were on an index card with their dates and weights. People would lose a quarter of a pound or half a pound or more. People would gain weight. Before the lecture started people would be invited to share how they were feeling about their weigh-in. I can’t even say why this bugged me when I was so young but it was like I sensed their vulnerability in that moment. Like if they gained weight they seemed to feel awful. When I was a toddler I had a disfiguring eye injury that left me legally blind in one eye. The pupil is permanently enlarged. It was super noticeable to kids. Some kids were mean about it. It often felt like a shaming moment when I was made fun of by other kids. I suppose I sensed this when people at my mom’s meetings admitted their weight gain to the group. I believe it is how I came to reject the concept of a diet.

If I reject diets then how did I lose weight over the past 20 months? I changed my way of eating. I made a lifestyle change that would stick. The first thing I did was dedicate a notebook to the cause. I set my daily caloric goal at 1,200 a day if I didn’t exercise, and maybe 1,400 depending on how much exercise I do. There are plenty of free apps that will do this for you but I needed to write it down so I could understand where the hidden calories were coming from. I needed to see it on paper. I look up calories of foods on my phone. I create dinners that are flavorful while not overdoing the calories. I give myself grace twice a week with pancakes for breakfast though I do so reasonably these days in terms of caloric load. Why pancakes? Because I love them. I’ll crave them and then eat too much of them at some point if I don’t build it into my week.

I used my notebook on a daily basis for about a year. I took notes daily on the calories I consumed, how much I weighed, and what exercise I did that day. I am gluten-free so in that way, I’ve had to be a little more creative in good food choices. Gluten-free foods can be quite high in calories. I’ve essentially cut out bread most of the time for that reason. Again, being a believer in the power of grace, I sometimes indulge in a sandwich. Instead of feeling guilty, or that I cheated, I relish each bite.

Each time I lost a pound I celebrated with my second favorite food: ice cream. Sure, it may seem crazy, like I sabotaged myself. I didn’t though. I was celebrating my success. I found joy in the positive messaging I offered myself. If I couldn’t pat myself on the back then really no one could.

The weight has been slow to come off for several reasons. I chose not to starve myself. I chose to make lifestyle changes in how much I was eating and what I was eating. I am in my early 60’s now. The older we are the slower our metabolism is. I have hypothyroidism, controlled by medication. I am of the opinion that even when hypothyroidism is in control the metabolism still suffers, not like when it is out of control, but almost like it’s never what it was.

Walking became running for me once again after I lost about 20 lbs. I run five days a week and love it. I love running because I lose my mind while doing it. I forget everything else and just run. I lift light weights and do Yoga on the days I run. Yoga helps to stretch these old lady muscles I have. It also grounds me emotionally. I take two days off, not back to back, from exercise each week. I haven’t felt this healthy, this fit, ever. I have lost 55 lbs. Initially, my goal was to lose 60. I may lose that last 5 or I may not. I will continue to do what I have been doing since May of 2019 without making an extra effort. If those few more pounds come off great, if they don’t, great. Now when I weigh in a few times a week I am all in on feeling I have done my best to take care of my physical, spiritual, and mental health. The most important thing is that I feel successful in my endeavor to change my life for the good.