When I Understood What ‘Till Death Do Us Part’ Really Means

594
594
4

“‘Til death do us part.”

When I said those words at the end of our marriage vows, I wasn’t thinking about death. I was thinking about living and loving as long as I could.

Our rabbi reminded me of them a few weeks ago, and the idea that the vows I had made were not open-ended, but only in force until death came, hit me like some kind of Old Testament revelation.

Death came, there was no denying that. A specific year, month, week, day, minute, second, recorded and shrouded in paper work. One could not get away from it. Death was instant. Everywhere in my life.

But the parting? There is nothing instant about that. Instead, it has been been slow, drawn out, merciless, emotional torture. Death brings absence. Fine. We don’t accept it, hate it, resent it, fight it, but it is a fact, so we absorb absence into our heart, our soul, our mind, our life and think, Ah-ha! I am moving forward.”

But parting requires more than absence. It requires acceptance. And it comes in segments, surprising you, throwing you off balance. Just when you accept that there will never be anymore of this, you are suddenly reminded that there will also never be more of that, and that, and that. And so it goes, month after month, the perpetual parting. Every moment you shared together has to be parted with, let go… there seems to be no end to the discoveries of what death has taken from you, what you must reconcile yourself to be parted from, to do without.

I acknowledge now that I have been purposely resisting the parting that is part of death. I did not want to permit it, felt that somehow any healing, any movement away from grief would be a betrayal, a kind of infidelity. Intellectually, I know that is foolish, but the heart and the intellect are often strangers.

And yet, however much one hoards one’s grief, the parting does come. You do learn to sit at the table and eat breakfast alone. You do learn to do up your own zippers, carve your own meat, balance the checkbook. You accept that there is no one beside you to share the laughter, get the joke, understand your anger, hold you in the night. You realize, finally, that the ties that bind are now fastened only to you. There is no one at the other end. You may not want to part, but the parting takes place. Like death, it is inevitable.

You don’t want to forget either, but you do forget. Yesterday I was trying to remember a joke that my husband told over and over and over — so often that I would grit my teeth. Now I can’t remember the punch line. I am not forgetting him, but I am forgetting the little things that were such a part of him.

The grief is still there. But suddenly, from somewhere, almost 18 months later, I do now occasionally experience the unadulterated joy that I never thought I would again. To my surprise, I am no longer numb. The flowers in the park, a small child patting my dog, the flight of a bird, planning a visit with my grandson with his friends — these things bring a lift to my heart that, for the first time, is not shadowed with the thought, Nothing is any fun without you.

I miss him terribly. I mourn his absence every day. Still. But there is a lightness to me now that I truly thought I would never feel again. I was not only sure that life was over, I wanted it to be over. Now I hear life knocking at my door. Does that make me any less of a wife, turn me into an unfaithful widow?

Next month, we will observe the traditional ceremony at the cemetery that, in the Jewish religion, officially marks the end of mourning. This should have been done in January, a year after his death — I put that off, giving the weather as the reason, but in truth, I didn’t want to end my mourning. I wasn’t ready.

Am I ready now? I do not know. What I do know is that when death comes, parting is inevitable. That one can forget and not forget. One can live with death and still be alive; mourn and still feel joy.

Because death, parting, forgetting, a return to life —  none of those things pose a threat to the love we shared. That will always be.

My husband died. But not love. Love never dies; it is endless, stronger than death, stronger than parting, strong enough to say, “Enter,” to life, knocking at the door.

joan straus

Joan Sutton’s essays on Alzheimer’s, caregiving, and becoming a widow are now available in a book (hard and soft covers) and ebook: The Alzheimer’s Diary. 100 percent of the author royalties from her book go to the Alzheimer’s Drug Discovery Foundation.

the alzheimer's diary book cover

A version of this post originally appeared on Sutton’s Place.

The Mighty is asking its readers the following: Describe a memory with a loved one you didn’t realize you’d held so dear until after they’d passed away. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

Want to help celebrate the human spirit? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

594
594
4
TOPICS
JOIN THE CONVERSATION

RELATED VIDEOS

One of the Best Things You Can Do for Someone With a Severe Mental Illness

906
906
0

Having an episode of psychosis or mania is hard. Trying to put the pieces of my life back together afterward is brutal. But the things society says to me every day chip away pieces of myself, even when I should be repairing the damage.

Once a psychotic episode is over and I can think rationally, the things I did and said while psychotic cause me great shame. Not only do I have to live with telling people I was Jesus, how the government was out to get me, that I was being filmed or recorded or any number of other delusions I may have during an episode, I also have to live with the day to day barrage of messages from the outside — messages that tell me I’m dangerous and that my illness is something to make light of, even make fun of. I have to live with that stigma. 

I’m not going to go into all of the jokes and memes people say on social media every day that chip away at my self-esteem, but I will say that even people who like to call themselves progressive, loving and accepting join in the “fun.” Even people who think they are sensitive to social situations and people who are marginalized toss out words like insane, nut-job, lunatic and pass around cartoons depicting a “crazy” lady with PMS.

When I see those words written from people who claim to like or love me, all I feel from them is a lack of understanding and hate. Yes, I literally feel as if they are sending hate at those who live with mental illness, and at me. Everyone in my life knows that I have schizophrenia. Anyone that wants to know what schizophrenia is like can read my book, Pills, Poetry & Prose: Life with Schizophrenia, read my blog or even more amazing, they can ask me.

If someone were to ask me what having schizophrenia is like, I would tell them it can be like going to a place with your worst fears, and living those fears out for days, weeks and possibly months. Are you afraid of being tortured? You will believe you are about to be tortured. Are you afraid of going to jail? You will believe you are going to jail. And then sometimes during psychosis, you will even be afraid of things you didn’t know you were afraid of. I can think of nothing more appropriate to call it than hell on earth. In the beginning psychosis is usually pleasant for me, but it always turns to terror over time, and that terror is total and complete.

So, if you ever wonder what you can do for someone with a severe mental illness, I have a suggestion: You can help build them up. The world is already constantly tossing self-esteem battering messages their way. You can be the change in their lives. You can help them see their talents. You can help them see their strengths. You can point out their positives. You can be kind to them, because it is tough. It is so damn tough, and we all get tired. It’s exhausting to constantly tell yourself you’re OK when the world says differently. It’s almost impossible to fight the world on your own. Be an ally. Spread the love.

unnamed-44

A version of this post originally appeared on A Journey With You.

Want to end the stigma around mental illness? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

906
906
0
JOIN THE CONVERSATION

A Letter to My Husband: Thank You for Being a Loving Special Needs Dad

419
419
3

Dear Ralph,

I couldn’t have known when we married what a wonderful father you would become. I couldn’t have known we would have a medically fragile boy who would test our faith. I couldn’t have known your inquiring mind and ability to think outside the box would be such a blessing in raising our son.

I remember being in the hospital room when you picked up the manual to Samuel’s ventilator and studied each page. Soon, you were as versed in the ventilator as the respiratory therapist, understanding the meaning of terms like positive end-expiratory pressure (PEEP), pressure support and volume control. Oh, how I relied on your mechanical mind to navigate the technical aspects of our son’s care. 

Once we were home, you created ingenious methods of assisting in Samuel’s care. One favorite was the toy you attached to the oxygen tank. The lights of the spinner wand would light up automatically when we turned the oxygen tank on, reminding us to turn it off when we were done.

I remember when you attached a fishing rod to the IV pole and used two dog leashes to hold Samuel’s gastronomy tube when we moved him. All the nurses commented on how practical it was and how they wished all their kids could use it.   

I’m so thankful you are Samuel’s father. You have valiantly taken the night shift, listening and responding to our son’s heart rate and oxygen alarms. I rely on the calming effect you have on our son and love all the walks you take him on in the stroller.

You are the unsung hero in the journey of Samuel’s life. You have not only stayed by my side every step of the way, but have proved a solid commitment to our son. I could not be on this journey without you. Thank you for being an amazing, loving, kind-hearted and caring father. You are so appreciated not only on Father’s Day but every day, indeed, every hour.

Your Wife,

Evelyn

The Mighty wants to hear more about relationships and special needs parenting. Can you share a moment on your special needs journey that strengthened your relationship? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

419
419
3
TOPICS
JOIN THE CONVERSATION

Photographer Captures Reality of His Dad’s Alzheimer’s in Striking Series

191
191
1

For Mark Seymour, photography is more than just a profession or passion. It helped him cope with his father’s last few years of life.

When his dad, Ronnie Seymour, was diagnosed with Alzheimer’s disease five years ago, what had begun as Mark Seymour photographing his parents’ daily lives turned into a way to face and document his father’s experience with dementia. The result was a four-year photo series, “Remember Me,” (below), as well as a short film, “A Portrait of Ronnie.”

“[It was]… a difficult and painful project but something I felt compelled to do, bringing meaning not just to us as a family but so I could take something positive from this situation and use it to help raise the awareness of… what dementia does to a person and their family,” Seymour wrote on his Kickstarter campaign page.

Ronnie and his wife Winnie in February 2014
Ronnie playing the harmonica in May 2014
Ronnie a month before he passed away

Ronnie Seymour passed away in March 2015, but his legacy now lives on through his son’s black and white photographs. The photos (full series below) show Seymour’s disease’s progression, from his diagnosis to moving into a local care home, to his death this year.

“Taking the pictures was relatively easy,” Mark Seymour told The Mighty in an email. “The tears came at the editing stage, when confronted by [the photos] on my screen.”

Seymour’s photographs will be displayed at an exhibition in London this September that will coincide with World Alzheimer’s Month. Afterwards, he hopes to take his exhibition to local and regional areas. He told The Mighty he wants to give people “an awareness of what Alzheimer’s is really like and what stages the patient goes through.”

To see the story in pictures watch the video below:

 

The Mighty finds strength, joy and beauty in people facing disease and disability. Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

191
191
1
TOPICS
JOIN THE CONVERSATION

What I Think Everyone With a Mental Illness Needs to Know

850
850
6

Dear Mental Illness Warriors,

I just want to tell all of you out there who have mental illnesses that you are loved. You are amazing, and you are my heroes.

What you go through on a daily basis and have gone through with your illness is hard, and you’re getting through it like a rock star. I am so proud of you for dealing with all you’ve dealt with.

The stigma you face is unbelievable, but you are overcoming it. You’re talking it out and doing whatever you can to help yourself. That is definitely something to be proud of, and in case no one has told you that in awhile, I’m telling you now that I am so very proud of you.

People who don’t have or understand mental illnesses may think it’s your fault. They may think because you have this kind of illness, that you are “bad,” “immoral,” “crazy,” “attention-seeking”… the list goes on. But I’m here to tell you that your mental illness is not your fault, and you are definitely not bad, immoral, crazy or attention-seeking. You are a person who happens to have a mental illness, and that’s nothing to be ashamed of. You did not ask for this. No one asks for any kind of illness.

I know having a mental illness affects your personality, behaviors, feelings and relationships, both with yourself and with others. That’s just the nature of the illness, and you can’t help it.

Don’t let anyone tell you you’re not worthy of help, treatment, love, or respect because of your illness. You are worthy of all of those things, but sometimes, you must fight to get them. Don’t give up. Keep fighting for what you deserve and don’t settle for anything less.

Don’t forget — you are not alone. You need not be ashamed and it’s not your fault.

I believe in you.

Sincerely,

Your fellow warrior, Megan

850
850
6
JOIN THE CONVERSATION

8 Ways to Ask (and Not Ask) About Why I Look Different

448
448
4

A friend recently asked me, “Lisa, how do you want people to approach the fact that you look different? What exactly would you like people to do or say when they meet you and are interested in learning about your disease (scleroderma)?” I’ve gotta say, it’s a stumper! Humans are curious creatures. It’s natural and healthy to wonder why people vary from the norm either in appearance or behavior.

I will attempt to answer this tricky question, but before I do, I must first give you a sampling of how I do not want people to approach the topic with me.

1. Blurting out, “What’s wrong with you?” or spontaneously asking, “Why are you sooooo skinny?”

Don’t go up to strangers and ask them personal questions about their appearance. It’s weird when some random patron at the grocery store stares at my splotchy, mangled hands as we examine the produce and says, “What’s wrong with your hands?” This person is not invested in my well-being. Their inquiry is blunt and off-putting. My fantasy response is, “I’m allergic to weird strangers who ask me intrusive questions.”

2. Exclaiming, “Congratulations! Do you know if you’re having a boy or a girl?” 

I have super skinny arms and legs but a disproportionally large mid-section. Possible contributing factors are: the aftermath of eight major abdominal surgeries, distention caused by scleroderma, my ostomy bag inflating, or my affinity for donuts and total lack of willpower.

3. Asking, “Are you a witch?”

4. Pretending to not notice I look different when meeting me, but determined not to pursue a friendship with me because I’m weird-looking.

It’s much easier to make a list of what not-to-do than to advise on the best way to handle this delicate situation. Through deep consideration, I devised the following guidelines:

1. Get to know me first.

If you meet someone in a social situation and get to know them as a person, then I think it is perfectly normal to ask them a few questions about his/her altered appearance. I recommend framing your conversation in the context of genuinely wanting to get to know them better.

2. Ease the blow.

It’s best to compliment someone first by saying, “You have gorgeous eyes, but what’s wrong with the rest of your face?” You’ve gotta soften the blow a little.

3. If I give you a clue, take it.

I try to give people overt clues about my disease. This saves us both a lot of awkward dancing. I have a magnet on my car that says “Cure Scleroderma.” When I go swimming, I always wear a Scleroderma Walk tee-shirt over my bathing suit. The silver lining in not being able to wear a cute bikini is that my tee shirts allow me to raise awareness for scleroderma, conceal my purple and red spots, allow people who meet me to immediately know what I have and go home and Google it if they so desire.

4. Emulate this third-grader.

I can think of no better way to describe how to approach me about my appearance than an interaction I had with a third-grader just this past fall. I had been working with this boy in a small group for several weeks. While dismissing the group, we had the following brief interaction:

Third-grader: Mrs. H, you’re beautiful! I mean really really beautiful! Honestly, you’re so beautiful, but I’ve been wondering, why are your wrists sooooo skinny?

Me: That’s a great question and I must tell you I am so impressed with the way you asked it! I know I look different, right? So here’s the deal: I have a problem with my skin that makes it much tighter than most people’s. That’s why my wrists look so skinny. My skin doesn’t stretch as much as it should. Does that make sense?

Third-grader: Yes. Does it hurt?

Me: Sometimes, but I’m really used to it so it doesn’t bother me so much.

Third-grader:  Oh. Like I said, you are really really beautiful, Mrs. H.

Mind blown! This third-grader just masterfully steered his way through a complicated question most adults are uncomfortable asking. He followed my prescribed guidelines to perfection:

-He waited several weeks and got to know me before asking me a personal question.

-He expressed interest in my well-being.

I must admit that I still don’t openly discuss my altered appearance with my kiddos. When a child asks, I answer with honesty, but I don’t bring it up. If I were truly fearless, I would ask my district if they would allow me to lead an assembly on “Embracing Our Differences.” I would boldly get up in front of the 600 students in my school and share my experiences in an age-appropriate presentation. I truly believe this would help our kids navigate these difficult issues that many of them face. Most cruel behavior stems from misunderstanding the differences that exist between us.

I would like all you readers out there to weigh in on this. I especially would love to hear from fellow teachers, former students and parents. Please take a moment to make a comment below.

448
448
4
JOIN THE CONVERSATION

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.