Mary Hahn Ward Creative Works bio picture
  • Mary Hahn Ward is a long time caregiver to her husband Tom. Tom had encephalitis more than 25 years ago. This serious brain infection left him with permanent cognitive impairments rendering him permanently and totally disabled. In 2010 Tom was diagnosed with Amyotrophic Lateral Sclerosis, ALS. Tom is service connected for ALS. Veterans get ALS at more than 50% the rate of non-veterans. Mary's care giving roll has increased steadily since the ALS diagnosis.

    Mary holds a graduate degree in health services management and policy and a masters in public administration. She has served in hospital and program management and has been a social studies teacher during her career.

    Mary's self care passion is photography, writing, and podcasting. Mary's blog writing is whatever she is interested in writing about, mostly care giving issues, however, she does not feel the need to narrow her focus to this topic.

    Mary and Tom have two grown children, a daughter-in-law, and two precious grandchildren. Family is everything to them.

From the day of diagnosis to May 1, 2018, this is how many days Amyotrophic Lateral Sclerosis, ALS, has been in our life. It is a lot of days. It is a long time. It feels like yesterday. It feels like time is on speed.

The journey to a definitive diagnosis was a long time in coming. It took years. It was fear filled. It was words we did not want to hear.

Fasiculations, muscle weakness and atrophy were, and are, daily reminders that this is a disease of epic proportions. Tom’s progression is slower than most accounting for the difficulty in diagnosing it. It was not a surprise that it was ALS. It took our breath away. It made me think of all of the days we had together. It made me scared of our future.

My dad used to say Tom and I were tied to the hip. It’s an old-fashioned kind of saying. It’s a true statement. It’s a poignant reminder of our mad love for each other.

We saw a number of specialists in search of a diagnosis. We traveled up and down the east coast, over a few years, seeking an answer to his ills. It was a mission. It was important to us to know what was wrong. It is a time I miss, a time of not knowing. It is ignorance is bliss.

After going through the tests, and the tests, and the tests, we saw one last neurologist. He kindly sat in front of Tom, making eye contact with just him, as if I was not in the room, and said he was sure Tom had ALS. That was it. The diagnosis became real and life changed. It was our new reality. It was all at once a relief to know and heartbreaking to hear.

We left the office hand in hand and went home. We didn’t cry, not then anyway. It would be a lie to say I didn’t cry later or don’t cry from time to time. It is a hard disease. It is a lot of days to live with it. It is a lot of days of waiting for the next part of his body to not work. It is a fact that crying is a useful release of pent up sadness.

Every day is not a sad day. Most days are good ones. Our love grows deeper, as it always has, when life has thrown us curve balls. This was the curvest ball we have had to field, ever. It is a beast. It will not destroy the tenderness we have for one another. It is fatal but it cannot kill our heart. It isn’t allowed.

May 1, 2018

 

 

 

 

 

Standing up for what you believe, that’s what I saw today when kids all across America participated in a walkout in solidarity for their 17 peers who were mercilessly gunned down in what should be a safe place for every young person.

Perhaps, over time, they can accomplish what adults seem incapable of fixing. Safe schools. It isn’t one problem that leads to violence in schools. It is multiple ones.

Their collective voices were heard today – if you disagree with them, you heard them – if you agree with them, you heard them. Peaceful disobedience is the very essence of what America was founded on. As a student of government, a teacher of government, as an American, I applaud them for taking a stand. #NationalWalkOutDay #NeverAgain

To some ‘on a whim’ translates to ‘let’s do it’ and it happens in the snap of the finger. To us it means, oh maybe, an hour or more to prepare, get the van loaded with everything. Everything is the painting gear – easel, tubes of paint, rags, tools – Tom and the wheelchair, Maddie in her vest, some snacks, and my photography gear.

On a whim I offered Tom the opportunity to plein air at the beach. You see, if I don’t he can’t go. He cannot drive anymore, and hasn’t for quite some time. It was a perfect day for it. Overcast, chilly though not freezing, and still off season, so not too crowded, and he had been in too long because of my work schedule.

ALS and ‘on a whim’ are opposites. I forget these things sometimes and that’s okay, it’s even good. It means, to me at least, that though Tom has ALS, we don’t let it define our lives. We work around the problems it presents.

I thought I would kick back and relax while Tom painted but I couldn’t help myself. I had to document the few hours we were there, after all, isn’t that what cameras are for?

With assistance he can still get to the sand. The assistance comes in chunks of effort. We do it in stages. He transports things with his wheelchair and I carry bunches of stuff that we can’t load on him and the chair. There are hooks on the back of it that help me so much, it’s crazy how much I love them! Who would have thought hooks could make someone happy? All the while we are mindful of Maddie being in a safe place with us, secure and protected from dogs that are off leash. Back and forth from the van to the beach and I’ve got him out on the sand. Then we reverse it when we are done.

This ‘on a whim’ took the better part of five hours from beginning to end.

This is what I get out of this series of photographs: there is more wasting than ever in his hands, his dominant right hand is weaker than it was the last time I took photos of him painting, his left hand is barely useful but he gets everything he can out of it. Tom’s resilience is incredible and enduring. He doesn’t give in, or give up, easily.

To the degree that anyone can fight this formidable enemy clearly he does. Though he can’t stop progression, he can control whether or not he allows it to infiltrate his heart and soul. Day after day, hour after hour, minute by minute, any time ALS tries to lay it’s negative shit down inside his brain, he shoots it down with a 50 caliber thought bullet.

He spends time organizing his thoughts before he gets started

Not so easy to squeeze the paint out anymore

Or open the tubes

Just like that he is transported into his other world of painting

His downrange look at his inspiration for the canvas

This look though…little did I know he wanted to know why I didn’t remember to bring his palette knives…he had to suffer with brushes.

So much concentration

Working with what he’s got

These are the ‘notes’ he takes on canvas. He will finish this in his studio tomorrow.

#ALS #Every90Minutes #VeteranswithALS #Onceamarinealwaysamarine

This Bench is Waiting for You

This bench is waiting for you
It faces the rising sun
It faces the ocean
It faces the setting sun
It faces east and west
The back moves to, and fro,
your choice
It’s empty
It will bring you peace
It is waiting for you

Break of Day Photographs