Death

Widows like Us


James Tissot - A Widow

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The link at the bottom of the page is to a column in the local newspaper. My personal opinion of the paper and its editorial writers is fairly low. The newspaper itself is generally light on actual news, and whatever course reporters take in journalism school to learn about bias and the importance of neutrality and fair and balanced reporting is evidently not a required one judging from the slant in most of the news articles I have read. Columnists are generally exempt from being non-judgmental. In fact they are paid o be opinionated. Infuriating columns are read by those on both sides of the issues. Employing an irritating columnist or two (or all in the Des Moines Register’s case) is good for the business of selling newspapers. Newspapers are not in the business of reporting news these days, or maybe ever, as an educated and informed populace is not the point. News is entertainment and going strictly by the number of talk news shows and the heads that populate them, some people are being entertained at the expense of those who need to be informed.

Although it is hard to pick a least favorite member of the Register’s editorial team, Rekha Basu probably ranks close. She favors heavy-handed liberal social agenda stuff. Her style is fairly dry, and she is preachy. Her late husband was a much better writer. His style was personable in a story-teller way and had he chosen heavier topics, I think he would have easily proved his superiority. My dislike of her is personal though. It goes back to the early days of Will’s illness when I was trying desperately to get him on SSDI (Social Security Disability Insurance). Having been told by the kindly young man who walked me through the application process that it was fairly likely that Will’s claim would be denied, I was willing to try anything to call attention to our plight and elicit some help in getting him accepted. At this point I had already sent emails to both state senators and several legislaturers. I would eventually receive help from the Republican Senator, Charles Grassley, but at this point I was desperate.

Someone I knew thought that I should contact Ms. Basu. This person was a fan of her writing and thought that Will’s story was the kind of cause that Basu usually took up. And I have to admit, she does use her column to point out social inequities and injustices an often uses real life stories of Iowans to do this. Not feeling I had anything to lose, I sent her an email as well. Within a few days I returned home to a message on the answering machine from her and asking me to call. I did. I never heard back from her.

It wasn’t until much later that I learned, through her husband’s column, that she had joined me in the widow in waiting club around this time when he was diagnosed with ALS. Will was in a nursing home by then. It was closing in on the last summer of his life. I don’t think I paid much attention to the news coverage and columns that followed but to note that it must be better to be famous when you were terminally ill because you seemed to get more help and support that way.

She lost her husband the June after Will died. There was a lot of press coverage. She was sainted. Shortly after she began writing her series on Surviving. In her widow’s zeal to make sense of her tragedy by helping others, which many of us do early out, she wrote about all forms of loss as though they were equal. Any widow can tell you that in no way does losing your spouse compare with divorce or unemployment, but she was very early days and, evidently, number than most at that point.

There was a message board attached to the series. It invited people to comment and tell their stories. I was just coming out of the fog at that point, and shy I am not when it comes to sharing my opinion and feelings in a message board forum. Let’s just say, I could have employed more tact. But since no one ever responded to me, I quickly lost interest and went elsewhere.

A couple months later, Ms. Basu wrote a column about the WET group, Widows Experiencing Transition, that was active in the metro area where I lived. I had been trying desperately at that point to find a support group that wasn’t online. The only ones I could find though were mixed groups, not just for those experiencing the death of a spouse or for groups or widows and the divorced which I couldn’t fathom attending. Thrilled to know of a real live widows’ group I sent her an email. Judging from her reply, she had read my posts to her message board and apparently I was not someone she wanted to hear from. She sent the contact information for the group but wrote also that she didn’t think I was the kind of person who would benefit from it. Ouch. I wrote her an apology and then scurried off the the UK widows’ board to flog myself for having hurt her feelings. It was only then occurring to me that as the further out, I should have been more cognizant of the tone of my posts and more supportive of her efforts. It was a mistake I have since strived to avoid in my dealings with “younger” widows.

I don’t read Rehka Basu’s work much anymore. I find her writing clinical and self-righteous still though I was impressed by the piece she did on profiling when her son was victimized by it recently. I also read her column about the death of her mother-in-law which kicks off her semi-dormant surviving series was again. The link is below.

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What Death Really Looks Like


I went and saw the movie The Prestige last night with a friend. There is a scene early on in the film where Hugh Jackman’s character watches his wife drown in a water tank during an escape trick gone bad. As the scene went on I could feel the balls of my feet bracing against the floor and pushing me back in me seat. My arms drew up into a x across my chest and my hands covered my mouth. I could feel my friend’s concern as the scene progressed and Jackman’s character tried to first revive the wife and then dissolved into disbelief and tears. After the scene had passed I relaxed and slumped a bit in my seat.

There were other uncomfortable scenes but this one stayed with me. It reminded me of watching my husband die. It did so because of the terror of both the husband and the wife. I was so afraid of being with Will when he died and equally terrified that I would not be there.

The hospice workers tell you exactly what to expect. Even as his body began to cool, extremities first, and his skin mottle from lack of oxygen, behind the back of the knees is where it starts, I was still not prepared for the last minutes.

His arms and legs had contracted with each stage of his illness. He was so spastic that his arms and legs refused to bend at all by the end. As he slowly lost that last battle with pneumonia, they relaxed and unfurled. I had forgotten how tall he actually was until I came back that evening to stay the night with him and found him completely relaxed with arms and legs straight and loose.

The breathing begins to be less obviously labored and slows. The urine output is negligible and bubbly. As the strength required to draw breath in wanes, the chest stops its rise and fall and the effort shifts to the diaphragm. The nurse on duty that night pointed it out to me. I asked if it meant that he was going to die soon, but she told me that this was unlikely and this could go on for most of the night though she was sure he would not still be struggling so when morning arrived.

He looked waxen and even less like the man I married than usual. I was alone with him when I noticed the odd way he was gulping. Like a fish when it is lying on a dry surface. It seemed almost as if he was using his tongue to pull the air into his mouth and force it down his lungs. I watched for a minute, maybe two more. His head now hung limp and he was facing me with glazed eyes.

I hit the call button. The aide took forever, though really a couple of minutes, to arrive. I pointed to him, asked if that was normal. She didn’t know. New? I don’t know. I never saw her again. She went for the duty nurse. By the time she arrived I was sitting on the bed holding his hand with my other placed on his chest.

“Is this it?” I asked.

“I didn’t think it would happen this soon,” was the reply.

“Tell him it’s all right to go,” she told me.

I could feel his heart speed up, an uncountable number of beats. I repeated what I had been told. I told him I loved him.

Suddenly everything is moving very fast. The worst was watching him try to breathe frantically through his mouth. Trying to bring air to lungs that were still. There was no sound. I am grateful still for that. I can block out the image when it pops up but know that I would be defenseless against sounds.

And then it was done. A deep sigh. His head hung limply, eyes half open. I felt the heart beat just a few seconds longer. Then he wasn’t there anymore.

I just cried. I would rather endure just about anything other than to cry in front of someone else but I didn’t even notice that the nurse was still there until she came around the bed and sat down behind me and gave me a hug. Then she left me alone. And I was alone. He wasn’t there. I wanted to believe that he was still in the room with me and finally able to understand what I was saying to him but I am not so sure. I didn’t feel him at all and I would know him anywhere. I stopped crying almost as quickly as I began and didn’t cry again for nearly a week.

This feeling of disconnected numbness settles in and it stays for quite a while. I still sometimes feel so removed from myself and my actions that it is like watching a movie. I can do such dumb, self-destructive things then.

I avoid movies and television for the most part anymore just because of what happened last night. It’s not real and doesn’t even look real because I know what death really looks like, but it’s enough like reality to pull me back.

And I want out.

A Little Background


I was holding my husband’s right hand when he died.  My left was on his chest. I could feel his heart racing even as he began to stop breathing. Faster. A thumping gallop that slowed and faded beneath my fingertips. He was gone. And it only took two years, five months and twenty-three days.

He was twenty-four when I met him. He didn’t even notice me, but I had noticed him to the point that the guy I was dating at the time asked me if I was going to break up with him for Will.

It didn’t happen quite that way, but seven months later I was sitting with him in his beloved S-10 declaring myself and asking him if he could see us together forever. Eleven months later we were married on a Friday the 13th. He scoffed at the triskaidekaphobics, and I am sure that more than one person remembered the date of our wedding when they heard that Will was dying, but he would never have associated the two events and neither do I because my husband was dying even before that first day I laid eyes on him.

Will had an x-linked metabolic disorder, Adrenoleukodystrophy. Susan Saradon made a movie about it once. It wasn’t a time bomb more like a cyberworm, slowing chewing away at his nerve’s protective covering leaving them exposed and defenseless until the external world could no longer find a way in, and the person who was my husband could no longer find his way out.

So silent and subtle that we missed the cues, we went on with our life together. Planned a future. Had a child. We were happy. He was twenty-nine when the doctors finally diagnosed him after two years of uncertainty. Of being told it was all in his head. Which ironically it was, though not in the way that they meant. Of course there was little that could be done and even then his illness was too far progressed.

He was losing control of his body. He had dementia. His short-term memory was so faulty that every time he heard he was going to die was like learning of it for the first time all over again. Suddenly, even though we still slept back to back, I was all alone with a terminally ill husband, a fourteen month old baby, and no one I could count on every day but me.

Yeah, my family helped and helped and helped. Dysfunctional they may be, but they also know how to circle the wagons. But, they were 3 and a half hours away with lives and problems of their own. His family? They were sprinters. Good for short bursts, not marathons. Some people are just that way. Friends? Well, I have learned something about people and crisis. Most can only be counted on for one, maybe two favors, so it is best to space them out and ask wisely. Most people have little patience for those of us with open-ended crises. People do not like to be around you when things are bad. Bad luck is contagious.

And things were very bad. It took nine months and two irate e-mails to my state senators to get my husband on Social Security. Social Security is the ultimate lottery and the deck is stacked in favor of longevity. Most people with catastrophic illnesses will die before they are even approved for disability benefits and forget about Medicaid. Dirty little secret there is that you have to be approved for Social Security before the state will help you. Ironically, it was the Republican who helped us through the shell game that SSDI is. Shame on him. There is a party plank against helping people like me and my husband. The Democrat, champion of the disabled (a self-anointment akin to Michael Jackson’s King of Pop), never even acknowledged my missive which didn’t surprise me at all. We wouldn’t have made much of a photo-op. We survived in the meantime with the help of my dear godmother, my mother’s older sister, who told me, “Whatever you need. You know you can ask me.”

For four months I pressed my luck and left my Will home alone while I worked. The unemployed alcoholic next door looked out for him, but I was lucky beyond measure that the house was still standing every afternoon when my daughter and I got home. After Christmas it was clear that I couldn’t keep taking risks, so my 76 year old father began to make the three plus hour trip to our home every Monday morning at 5 AM and would stay with us until Wednesday afternoon. On Thursdays I coerced my mother-in-law to take him on her day off. Friday? I strapped his cellphone to him and called him – a lot.

When he was finally accepted for SSDI, we were able to put him in daycare. He hated it. He was the youngest one there by decades. Every morning I was up at five. Dressed myself. Dressed him. Dressed our baby. Our commute included the baby’s daycare and his. It was a twenty minute drive that took nearly an hour, and it was repeated every afternoon. I was averaging six hours of sleep a night and that was during a good week of which we didn’t have many.

In addition to my middle school teaching job, I had a now toddler and nearly so husband whose basic and not-so basic needs required my attention, plus the cooking, cleaning, laundry (with a still incontinent child and a now incontinent husband – there is a lot of that), yard work and shopping. I felt like an old woman and despite the fact that my sister assured me there were many other women my age who looked much worse, I began to wonder what kind of toll this was going to ultimately take on me.

Our income was nearly halved when Will got sick. I was borrowing money from my family. I was probably fifteen thousand dollars in debt at one point, and that wasn’t counting the mortgage. I was determined to hang on to our house, and I was going to get us out of debt. The only way to do that was to make more money. And the only way to make more money, as a teacher, was to get my masters.

So, the summer after Will got sick, I started grad school. I guess that was crazy. I mean, looking back on it now I can see where the average person might think that was crazy, but I had to survive. My husband was going to die, but I wasn’t. And I had a child. Beautiful and smart and funny. And she deserved more than rubble to start over in because one day we were going to be starting over. Although the funny thing about that is that I was already starting over and didn’t know it.

Will went into a nursing home that fall. I couldn’t take care of him anymore. He wore diapers. He fell. He was nearly blind. I didn’t let myself cry. I never let myself cry. If I cried, I would be dead in the water. There would be time for tears later, I thought. Every time we visited him, he would ask when he would be able to come home. I would explain again that he couldn’t and he would say, “That fucking sucks.” By Christmas he was in a wheelchair most of the time. By spring a geri-chair. He couldn’t feed himself. You couldn’t understand him anymore but it didn’t matter because he would only ask to go home at that point anyway and I was past tired of trying to explain to him why he couldn’t.

That summer, during the weeks when I wasn’t in class from 8 AM to 3:30 everyday, I would drop my daughter off at daycare in the morning and go and feed him breakfast. The aides were always glad to see me. He barely ate for anyone else. It was the closet to time alone I could get with him. After he was fed, I would pry his fingers from my hand and go home to take care of housework or homework or errands. Come back. Feed him lunch. Go home and do whatever yard work there was or sneak in a run if it wasn’t too hot and my asthma wasn’t too suffocating. Then I picked up my daughter. Maybe I would convince her to go out to see her father, but often she would cry and refuse. He scared her. The other residents scared her. We never went for dinner. That was his mother’s time.

In the fall I changed schools to try and shorten my commute, be closer to the preschool my daughter attended, and because the strain of preteens was beyond too much for me anymore. I loved teaching middle school. They are fun, honest to the point of a blunt instrument, and still salvageable, but they are emotional parasites. I moved up to the high school. I was teaching at-risk kids, who interestingly possess many of the same traits I adore in the younger students, but they are not quite as needy. They are aIso a bit more empathetic though I didn’t share much with them. They knew I had it rough too, and it gave us a common bond. I helped them make up credits they needed to graduate, and they helped me feel, for at least from 7:30 to 2:30 every day, that I was normal.

We were in a routine. My life was my daughter, my job, grad school and visiting Will. We had only a few friends left at this point. They do come back for the funeral, but by then they are just people you used to know. It was a lonely way to live. I filled in the holes with books and magazines and DVD’s and the internet message board friends I had made over the years.

Strangely I had more faceless contact with the women on my mommies board than I did with people I was actually teaching with most days. That was my fault though. I couldn’t really concentrate on face to face interaction. I found myself retreating into elaborate daydreams, like I did when I was a kid, and my parents fighting and my dad’s drinking got to be too much. Better than Zoloft , fewer side effects anyway. His mother’s family couldn’t be bothered and his mother had even moved without giving me her new address or phone number.

Routine. It’s good. It’s welcome even, but it makes you complacent. You start to forget what it feels like to land square on your tailbone on the very thin ice. My dad had a stroke the weekend before Halloween. I went home to help out, support my mom. He was having surgery and could have easily died. The reality for me was that my mom and sister were not going to be able to help me much anymore. How selfish is that? The survival instinct is stronger than one realizes.

When I got back home, Will was in ICU. Embolisms and pneumonia. No one from the nursing home called me on my cell. I found out what had happened from the overflowing answering machine that I was almost too tired to check. I arrived at the hospital at 3 in the afternoon with a terrified three year old on my hip. Will had been there since 9 AM. I found my Cheshire cat of a mother-in-law playing out her dream role for an unsuspecting hospital staff who clearly thought that my poor husband had a wife who didn’t much care about what happened to him. What did I want them to do, the doctor asked me. I didn’t know. I had not planned on hospitals. I had naively assumed that Will would die in the nursing home. In his sleep. That I would get a call one morning and it would all be over. Most people don’t die in their sleep. People like my husband get pneumonia from aspirating food. They get pulmonary embolisms from lying in bed all of the time. They die slowly over days. They are awake. It took me nearly two days to get anyone to put me in touch with the palliative care nurse. They assess patients for hospice care. They make recommendations that doctors sign and insurance companies approve. It took still another day to check Will into a hospice.

The morning they moved him to hospice, I had a migraine so bad that I could barely crawl to the bathroom in time to throw up. I threw up all the while my daughter watched PBS Kids and periodically came in to pat my back and ask if I had “pukey-tummy”, and reassure me with, “I am going to be a doctor when I get big. Then I can help your pukey-tummy, Mama.” I finally had to call my best friend to come and take her to school so I could try and sleep until my medication kicked in.

I didn’t get to the hospice until after Will had been settled in. Not a good first impression and one that would cause quite a few problems in the coming three months. Still, hospices are a little slice of the waiting room to heaven. They took such good care of him. Of us.

I am not amazing. I am not particularly strong. I am not a saint. No one will ever make a Lifetime movie about me. But the day my husband died, I was out of (major) debt and six months from my masters. I don’t know how many people came to Will’s memorial because my mother-in-law rolled off with the guest registry, but at one point there was no place to stand and a line out the front door. He was the amazing one. He loved unconditionally. He gave the shirt off his back. His friends, big guys who drove trucks and collected power tools, stood in front of me with tears rolling down their cheeks. I consoled more people, hugged them even, and I would rather be peeled like a grape than touch someone I don’t really know. I will never live up to Will’s image of me but I did my best that night. He, though, will always surpass my most cherished memories of him even with his warts.

I took off three weeks from work. I was sick as a dog. I had a strep infection the week before Will’s final illness and the lack of sleep and stress turned that into shingles. I didn’t have time to be sick or cry or think about anyone’s grief but my daughter’s. I had a five chapter research paper to finish, a course on reading strategies I was in the middle of and four books to read and write essays on for my masters seminar. Then it was back to school, mid-term grades, parent teacher conferences and just before spring break – comprehensive exams.

I was in the middle of comps, on -line essay stuff that was like writing a second research paper, when my dad needed more surgery. I spent nearly all of spring break sitting in the hospital. He nearly bled to death and had to spend time in ICU.

At one point he was in one room and my uncle’s wife of 50 some years was dying in the room next door. I remember walking my uncle to up to my dad’s room, after he was moved out of ICU. He was telling me about how long he and my aunt had been together. He looked so small and lost as he shuffled onto the elevator. I just listened. I knew better than to tell him how lucky he was to have had so much time with the woman he loved. Because when you love someone, you’ll never feel as though you had enough time. There will always be one more thing to say or do. That’s the beauty in having found someone. My uncle was a very lucky man.

I took the last month of school off. Sick again. With most of my grad work done and my students finishing up for the year, I had time to think again about something other than making it through the day, and 3 some years of stress and holding on kinda caught up with me. I ran into a co-worker on one of my trips to school to check up on my sub and turn in senior grades, and we chatted a bit about what had been going on.

She was just coming out of hard times herself. Her husband had had cancer but after a long struggle was well and cancer-free. She told me how glad she was that I was finally taking time for myself, and I mentioned that it would likely be a short respite because I was going to need to take in my 12 year old nephew for the summer at least. My parents had been raising him, but with my dad’s health problems it was a strain now. “Have I told you how wonderful you are?” she asked. No, I told her but thanks.

I don’t think I am wonderful, but I am lucky. As lucky as my uncle and aunt. As lucky as any lottery winner. I had nearly 7 years with one of the greatest guys ever. I have an extraordinary little girl. I have a family that loves me. I know who my friends are and aren’t. I have a job that even with NCLB doesn’t suck. And I am going to be okay. A friend I worked with in middle school asked me early on in Will’s illness how I could get up everyday and come to work and be so normal. “Because someday I am going to be happy again”, I told her. Someday is now.