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.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Fall, 1986 – Kate was just two years old. Sean was just months from turning four. They are 19 months apart in age. I was 26 years old soon to be 27. I was pregnant in this photo. It is the only photograph we have in which we know we were pregnant with our last baby.

October is National Pregnancy and Infant Loss Awareness Month. Every year when October seems to suddenly be here and I see soical media posts about it being Pregnancy and Infant Loss Awareness month I consider becoming part of the conversation in my own small way by sharing my story, and then I don’t do it. I didn’t decide to write it this year in preparation for this month. It was decided for me. I was looking for some photos for a project and came across this photo of me with the kids. It feels like the right time to share.

Tom and I made the decision to have children a few years after we married. I was in my early 20’s and physically fit. I had been long distance running for a few years and felt prepared physically. As planned we got pregnant just a few months after going off birth control pills. Like so many women who are wondering if they are pregnant I took an at home pregnancy test. I was pretty excited to find out I was. Two months into the pregnancy we had a miscarriage.

For sure I thought it was my fault as I had continued to run after I knew I was pregnant. My obstetrician thought otherwise and counseled me to let go of the guilt. I’m not sure I did that so easily. I was miserable that I had a miscarriage. I had to have a procedure to stop the heavy bleeding and needed some time to heal both my body and my heart.

Over a period of 18 months, we would have 3 miscarriages. Just in case running was a problem with the first pregnancy I never ran again when I was pregnant. I can still recall with laser sharpness how people tried to offer comfort that hurt more than helped. “Don’t worry, you are young, you can keep trying” “There was probably something wrong with those babies. They were not strong enough to survive.” “At least you know you can pregnant”.  I wish I could say I let those words slide off of me but I didn’t. My feelings were raw and my fear was real that I’d never be able to carry a baby to term. Those sentiments shared with me did not help. I do know they were trying to help me feel better and meant no harm. People, me included, struggle with the right words during tragic or difficult times of loved ones.

All of these years later I’ve learned to offer others, and myself, more grace than I was able to back then. The truth of it is sometimes nothing can make you feel better. You just have to feel the things as they are and give yourself the space you need for those feelings. Some things in life are not fixable.

Our fourth pregnancy brought us our son. Nineteen months later we had our daughter. Each of their births were by cesearan section. We did not anticipate a c-section for either of their births and held out to the last minute before agreeing it was the right thing to do. We were not stubborn about it. We just wanted the best shot at a natural birth if at all possible. It took exactly one second of our babies in our arms to fall in love with them.

One would think two live babies who were now toddlers would be enough but we weren’t done yet. Tom and I wanted to have at least one more child. In the fall of 1986 I was pregnant again. After the births of our two children, we knew what we were in for and super excited. I had a ton of morning sickness with this pregnancy, the day and night kind of morning sickness one hears about. At 16 weeks we heard the babies heartbeat. We thought for sure we were going to go the distance with this pregnancy just like with our son and daughter.

When we were pregnant with our daughter I had intermittent bleeding. It was January. Tom worked full-time and was in college at night, four nights a week. We had one car and lived in an apartment. The apartment’s heaters were under the windows. They would make the windows moist and freeze over. It was either too hot or too cold in the apartment. When the bleeding started I was put on bedrest. Our son was just 11 months old. How does bedrest work in a situation like that? It doesn’t. The boy and I stayed home all day, all night, every day until the weekends. With frozen windows it was like we lived in an iglo. On the weekends’ Tom did everything to get us ready for the next week – laundry, food shopping, taking our son to the park, he did all the things except his homework. He never had a minute to breath on weekends. On week days he left at 7:45 a.m. and walked in the door at 11 p.m. If anyone could handle all of everything it was Tom. Amazingly, our little cherub survived the crazy life we had and came into the world at a healthy weight of 8 pounds 9 ounces and 22 inches.

Our last baby offered no clues as to any distress. I felt quite pregnant with all of the hallmarks of feeling naseous and my waist beginning to expand and then I didn’t. One day pregnant, the next day not. It was just like that.  Tom and I went to the doctor and the baby no longer had a heartbeat. There was nothing to do but wait until my body released the baby. It would be a week before that happened.

Christmas Day, 1986, that’s the day my body chose to let our baby go. It was the most difficult one of all of the babies. So much bleeding, so much heartache. I spent the night in the hospital after the procedure. They let me convalese on a surgical/medical floor instead of the maternity floor. I picked up a virus while in the hospital and came home terribly sick. I don’t care what anyone says my broken heart left my body vulnerable to illness. It took me weeks to feel healthy again.

Tom made a decision to have a vasectomy. Every time we were pregnant I had surgery of some kind, so six surgeries and two toddlers who needed a momma to take care of them brought Tom to that decision. He was unmoved by my resistance to his decision. I knew he was right but hated that he was. I grieved that decision pretty hard for a long time.

Every baby of ours that died I grieved. Even though I barely knew them I grieved hard for them. I told myself a story about each of them. I gave them names and genders: Margaret, Siobhan, Oliver, and Megan. They may have came into my life briefly but they left indelible love in my heart, for always. All of these babies and the two who lived to be bright shining stars, Sean and Kate, deepened my life more than I could possibly have imagined.

To all of the moms whose babies have died I hear you. I see you.