Lorenzo’s Oil

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.