Snow and Eggs

(Ding)

Is that what I think I heard?

 

Wait in the darkness
 

(Ding)

I’m 98% sure that was the bell. 

I check the clock.  It’s a little after 4 AM.  It’s Sunday.  So much for sleeping in this weekend.

I get up out of bed and creep toward the bedroom door.  My wife and I currently rent a one bedroom apartment in a sleepy little Hudson Valley Town.  We moved here from Queens about 3-years into her illness.  At the time, we lived across the street from an auto body shop.  Every time they ran the spray booth, which was most weekdays, my wife would end up very sick.  We had to get away. 

I felt that the best thing to do for her health was to move up to the country.  People have been escaping the city to convalesce in the fresh mountain air for centuries.  To me, it seemed like the best thing for her health.  It didn’t help that rents in the City were going up, as were our medical expenses, and my salary wasn’t.  The reality was that we could no longer afford to live in or near the City.  Anyway, we found a small apartment near the Hudson, which met all of our health related requirements like wood floors (more on this in later posts) about an hour and a half north of Manhattan.  The perfect place for her to heal for a few months.  In that time, we would certainly find a house, and then we could put down roots.  After a few months of fresh air, I was certain that my wife would be ready to begin a new life in a new house.

Problem is we haven’t found a house yet.  It’s been a year and a half.  We’ve had seven houses slip out of our hands.  Each one slipping away under more preposterous circumstances than the last.  Some of them had even gotten to the point where we invested in home inspections, but for one reason or another, it just never worked out.

It’s important for her healing process for us to find a house.  It’s one thing for me, a country boy, to leave Queens and head up to the hills.  I was able to get my job relocated and away I went.

It’s much different for my wife to leave the City.  It’s not just leaving her home, her family, and her friends or adapting to a new lifestyle, she could adjust to that.  It’s that she doesn’t drive.  She got her license when she started working, but she’s only been behind the wheel a few times.  If it were just inexperience we could deal with that, but her neurological condition causes complications.  For one, she has trouble focusing, to say the least.  A few times when we’ve gone on short walks, she’s started to accidentally walk into traffic.  Her brain just isn’t all there sometimes.  She often jokes it would be one thing if she walked into traffic, she’d just injure herself, but she doesn’t want to be responsible for harming or killing others if she blows a red light or something.  In addition, when her neuropathy flares it causes numbness, tingling, and pain in her feet, which would make working the pedals difficult.  She’s also suffered from convulsions and near fainting spells, which obviously affect one’s ability to safely operate an automobile.  Anyway, for a person who doesn’t drive, moving to the country is like moving to complete isolation.  There is no public transportation.  On the few days when she does feel semi-functional, there is no way for her to get anywhere without me unless she wants to walk nearly a mile each way, which she can’t physically do.  We don’t know anyone up here who can come give her a ride.  Most of her friends don’t venture this far Upstate or don’t drive or own cars.  She’s completely isolated without me.  That’s why it’s so important for us to find a house, because a house in a more walkable, village-like setting would give her some independence, and some sanity, back.  She’s losing her mind sitting inside this one bedroom apartment.  She is like an animal in captivity.  She needs to get out on the days she feels well enough to.

It’s the other reason that we desperately need a house that is obvious to me right now.   The layout of this house is not conducive to her healing.  For starters, we live on the main level of the house, the owner of the house lives on the bottom floor.  When he decides to clean, usually with ammonia, it means that my wife’s chemical sensitivities are kicked into overdrive.  We have no control over our home environment, which is critical for a person with her condition.

The pressing issue though is her extreme insomnia, which is brought about, at least partially, by the neurological injuries she suffers from.  When she is lucky enough to actually sleep, she typically falls asleep sometime between 3 and 6 AM and gets up around noon.  I get up at about 4:40 AM to go to work.  Obviously, those schedules are incompatible, as I usually ended up being awoken by her coming to bed, which gyps me out of an hour or two of sleep each night (I average about 6 hours if I’m allowed to sleep, so losing an hour a night on a regular basis is pretty detrimental to my health).  About a year ago, I started sleeping on the futon in the eat in kitchen/ living room area of our apartment.  That solved some of our sleeping issues, but presented others.

The kitchen is right outside of the bedroom.  When I do get up before 5 o’clock, I’m usually puttering around the kitchen to get breakfast and get ready for work. This often wakes her up right as she is falling asleep, and often has dire consequences for her sleep.  The front door is adjacent to the bedroom door and the driveway is next to the bedroom window.  The act of me leaving the house, walking to the car, and starting the car also usually wakes her up, which means she will lie there for another hour or so trying to get back to sleep.

So that’s how I ended up on the futon.  Now I am groggily creeping towards the bedroom door.  I want to confirm I heard the bell. Many times I’ve dreamt that I’ve heard the bell when it wasn’t actually rung, and the last thing I want to do is deprive her of sleep because of an imagined bell.  So I wait outside the door, listening intently.

(Ding)

She was calling me.

I walk into the bedroom to ask what is wrong.  It’s 4 AM and she still is not able to sleep.  Her face is burning, her leg feels like it is on fire, and she has a bad stomach ache. 

I ask the question that I need to ask, even though it often upsets her, “What can I do?”

In this case, not much.

I end up just sitting with her in the darkness for the next two hours.  She’s very upset.  The illness has taken a psychological toll on her, not just a physical one.  She feel’s forgotten by society.  She feels forgotten by many of her friends.  She feels forgotten by some of her family.  She’s very angry at the world.  It’s one thing to be sick every day, lose your successful career, lose your social life, lose most of your friends, lose your independence, lose your dreams of having a family, and lose your sense of normalcy.  It’s quite another thing to lose all this, knowing that your illness was caused by negligence of others, and that you have no legal recourse.  After all of this, very few people even recognize your struggle, and many people say disparaging things regarding your health on a regular basis.  It’s literal insult added to injury.

This morning, she’s upset by a nasty comment regarding her health that her uncle’s wife made after her grandmother’s funeral, and the subsequent argument that ensued.  But this morning, she’s also upset with me.  I’m the last one standing in her corner, and I hurt her yesterday.  It was nothing I did intentionally, but I hurt her nonetheless.  Suffice to say that being a Marine sergeant, a structural engineer, and a stereotypical man, I’m probably not the best at dealing with emotional issues.  There was some family drama that I probably should not have inserted myself into.  I thought I was behaving logically, but logic often has no place in these matters, and I ended up making things worse.

The end result is that my wife, who had already had enough, now feels even more alone.  And I share some of the blame for that.

I brew a cup of coffee and we discuss the matter. After she has gotten a few things off her chest, she seems to feel a little better, at least emotionally.  Interspersed amongst the conversation about the family situation we try to evaluate her physical condition.  When I first came in the bedroom, she asked me to take her to the hospital because she felt so ill.  After examining the benefits of going to the hospital (very few…there’s not much doctors can do for her) and the risks (not only would she be disrupted and uncomfortable, she’d almost certainly pick up a germ), we mutually decide her bed is the best place for her.  The darkness is giving way to the early morning twilight.  I get her a supplement to help her sleep.

I leave her around a quarter after 7.  I hope she will get some sleep.  But now I need to get ready for church.  I’m already late when I suddenly realize that we got a lot more snow last night than I thought we were supposed to get.  I don’t have time to shovel the driveway, but even if I did, I couldn’t.  You remember how I mentioned that the bedroom window is right next to the driveway?  That means making no noise in that area until she is up.  She usually wakes up around noon, so by the time I get her breakfast ready, the earliest I will get onto the driveway is 2 PM.  An incredibly minor point compared with everything that we deal with, but it has the effect of condensing my day.  As mentioned, I’ll need to get up early tomorrow morning.  That means getting to bed at a reasonable hour tonight.  I’ll have a lot of chores to get to today but they are either in the driveway or in the kitchen, which means they won’t start until she gets up.  It’s hard enough working full time and being the sole caregiver for a disabled woman, on top of everything else that needs to get done.  Losing half the day doesn’t help.

What do I have to do you ask?  Because of her various food intolerances and due to some of her neurological issues, she needs to eat a very strict diet.  Her diet requires fresh food cooked from mostly organic ingredients.  I have a system set up for it that requires military level planning and efficiency.  After consulting her, I prepare a menu for her every Tuesday night for the next week, making sure that she gets the nutritional profile that she requires.  This doubles as my shopping list for Wednesday (10% off at the grocery store 5-8 on Wednesday!)  Although I’ll supplement this major shopping with a couple quick trips to a local grocery store or the farmer’s market, I limit trips to the big grocery store (and the number of 40 minute round trips, not counting time spent shopping) by hitting the store once on Wednesday with a comprehensive list for the week.  Then, on the weekends, I look ahead to the weekday meals and identify those items that can be prepared in advance or that will require a lot of cooking time.  Those get made on weekend afternoons and refrigerated or frozen until needed.  This saves precious time during the week when I may be running late at work, or have to bring her to the doctor or something.  We wouldn’t eat without this level of planning.  This is what we have to do because we are basically alone in this.  But cooking will have to wait until I am allowed in the kitchen.

After church, I head to the local diner.  I really like this place.  It’s not just two eggs with corned beef hash (not that there’s anything wrong with that!) They serve high quality organic food, without the pretentiousness.  It’s the best of both worlds.  It’s your down-to-earth, friendly, local country diner serving up gourmet fare.  The sign on the wall pretty much sums up the atmosphere here, “Be nice or leave.”

I usually go to the coffee shop after church, not so much because I like it, but because I have ulterior motives.  You see, I can sit in the coffee shop, spend an hour reading the paper, and nobody will care or notice, because that’s what people in coffee shops do.  That keeps me out of the house for an extra hour because if I’m in our one bedroom apartment between the hours of 9-12, it’s inevitable, no matter how hard I try to be quiet, that I will wake her up.  However, I’m trying to cut back on carbs, so I’m foregoing my weekly bagel, at least for a little while, so that leads me to a place that serves mostly protein.     

I enjoy my Portuguese scramble (eggs, chorizo, kale, and a little bit of potato…and yes I know I’m trying to cut back on carbs, but it’s Sunday, so I’ll treat myself to a few forks of hash browns) wishing she could be here with me.  She’d love it here too.  Not just the food, because before she got sick and she had to stick with this insane diet she was quite the foodie, but she’d love the atmosphere too.  A real friendly place.  I make plans to maybe take her here someday.  I scan the menu…she could maybe eat that, oh wait, it has potato.  Or this…well, they’d have to make it without the sauce, which probably wouldn’t taste as good.  Maybe she could just get an omelet with fresh veggies?  I’d just have to check to make sure the eggs were antibiotic free, that the vegetables are organic (we’ve noticed that meat or dairy that isn’t certified organic and antibiotic free can exacerbate her neurological and gastrointestinal issues.  Organic vegetables are important too, but not as critical as the animal products.)  It gets complicated.  Fast.

Then, I’d just have to not come here with her until May, to make sure that the risk of another customer having a cold or the flu was minimal, because her immune system is very weak (she catches a germ about once a month, just about every time she leaves the house), so I can’t risk her being exposed, or else that means weeks of her lying in bed (she also recovers slower, more on this in later posts.)  The eggs here are good, but not worth that.  And I’d also have to make sure we sit in an isolated area so that nobody comes in wearing strong perfumes (again, certain synthetic chemicals in the perfumes would trigger a neurological response) and away from the kitchen, to make sure no offending smells from that area do the same thing.  And then, if she gets up at noon, it usually takes her an hour to get out of bed each morning because she’s either in too much pain or she just doesn’t have the energy.  So if she showers the night before, all she’d have to do is get dressed…we could maybe be here by two, which is when they close.  So forget it.  I’ll never get to take her here.  Even with the best laid plans, it would never work.  Chalk two more things up to this condition: the most routine things become an exercise in logistics and the loss of companionship.

As I have no dining companion today, I sit at the bar.  In comes the after church crowd.  Luis (names changed to protect privacy), also a Marine, in Vietnam I believe, and his wife.  Their daughter, son-in-law, and grandkid have joined them.  It’s hard not to feel a little sad.  Barring a miracle, we’ll probably never bring kids to see their grandparents at Sunday morning brunch.  Next comes Joe and his wife.  They are an absolutely adorable couple.  Joe’s a World War II vet, so he has to be in his late 80’s at least.  He still passes out the bulletin at the door after Mass every week.  I’d love to get to know both of them better, but I’m a ridiculous introvert and I feel incredibly self-conscious sitting alone at the bar.  I don’t want to start a conversation.  Particularly an awkward one.

Both seem like great families, and I’m sure they would help if they could or knew how.  I don’t even know what to ask for help with though.  What are they going to do?  Make my wife’s body stop burning?  Buy us a house? (We can afford a house, just not one that works for us.  It needs to be walkable to give her independence and move-in ready.  Not that we both wouldn’t love fixing up an old house, it’s because we can’t do anything with her in it.  You think it was bad with an auto body shop across the street?  Imagine the fumes created by remodeling a room.  Anyhow, the houses that would work are quickly gobbled up by hipsters from Brooklyn who apparently have piles of money lying around their bedrooms.  We can’t compete with that having lost what we have.  And it’s not like we can start a fundraiser for this either as there is very little understanding of the limitations of my wife’s illness.  Most people would think, “Well, I want a move-in ready house in a walkable neighborhood too.”  For us though, it’s not just a convenience that would be nice.  It’s essential to my wife’s health.)  Could they cook a meal to the exact specifications?  Make people stop calling or texting her when she desperately needs rest?  What help do I ask for?

That’s why it’s such an awkward conversation.  If all I had to say was, “My wife couldn’t be here today, she’s not feeling well.  She’s dealing with (fill in the blank recognizable illness)”, it wouldn’t be awkward.  It’s a conversation most everyone would understand.  And many people would lend whatever support they could.

Now, I know this sounds like a lot of complaining, but I don’t want sympathy.  I just want to give people a glimpse into the average day of a chronically ill and housebound person.  I just want people to understand what they go through so that they will be treated with the respect and dignity they deserve.

I can only nurse my cup of coffee for so long before I have to give up the spot and pay the tab.  I head home, but it’s still much too early.  I try to sneak in without waking her. I had time enough to write this, so obviously I was successful in being fairly quiet.

(Ding)

She barely slept.  She is still burning all over.  She can’t get out of bed to get herself to the bathroom.  It’s going to be a bad day.  I need to go.