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.

Citrus Teas

Because winter doesn’t seem to want to end this year, I thought I’d post these recipes for citrus and spice teas that my wife found in Martha Stewart Living.  They are slightly modified for ease of preparation, and I leave out the "sweet stuff" that might not be good for a chronically ill person (you can find the original recipes here).  They only take 5-10 minutes to brew up, they are chock full of Vitamin C and herbs known to have healing properties, and they hit the spot on a cold winter afternoon.  Each recipe makes three cups.  Brew them when you have time, or while you are cooking up dinner (they’ll keep in the fridge for up to a week.)  Usually my wife has one and we pour the other two into two Pyrex containers (each container is a single serving.  Now if she wants a tea on a busy weeknight or during the day when I’m not home, all she has to do is just dump one of the Pyrexes into a saucepan, put it on the stove, and in like 2 minutes she has homemade herbal tea) or she has one, we save one, and I have one myself.  If you have the time, the second option is a great way for caregiver and care receiver (I need to find a better name for this individual during the course of this blog.  I’m open to suggestions.) to spend 20 minutes together and just talk like normal people and forget all the craziness surrounding them.

For both recipes, all you do is boil water, dump the citrus juice in, dump the grated spice in, let it simmer for a few minutes, and then strain the chunks out while you are pouring it into the cups/ Pyrex.  It really couldn’t be easier.

Lemon-Turmeric Tea

·         3 ½ cups of water (we always use filtered water)

·         Juice from 1 large lemon (or 2 small…use your judgment and suit to your taste)

·         About an inch long piece of turmeric root, peeled and grated (you could use about a ½  teaspoon of ground turmeric if you can’t find the root in the store)

·         Dash of ground cayenne pepper

Ginger-Lime Tea

·         3 ½ cups of water

·         Juice from 1 large (or 2 small) limes

·         About 4-inch long piece of ginger, peeled and chopped or grated

Answering the Bell

When I was discharged from the Marine Corps in 1999 after a grueling 4-year tour in the Infantry, I had mixed emotions.  I was excited about my new life ahead of me, my newfound freedom, and the new opportunities that awaited.  I was relieved that I would no longer have to endure the rigors of military life, the “zero dark thirty” reveilles, the forced marches with 80-pound packs, the isolation that often comes with military service, and I was excited that I would now sleep in a bed almost every night (I’ve spent more nights lying in the bogs of swamps, surrounded by every form of crawling thing you can think of, than I care to remember).  But I also felt a sense of sadness.  Sure, there was sadness with leaving friends, and any life transition is accompanied by bittersweet feelings for what is left behind, but there was a different longing here.  I joined the Marines to help defend the weak.  I truly believed we could stop genocides, prevent terrorist attacks, and generally ensure peace and stability abroad.  I was never called upon to actually do that. 

Now this probably makes absolutely no sense to anyone who did not serve.  I should be on my knees thanking God that I never had to endure combat. And true, I can appreciate how lucky I was much more now that I’m pushing 40, and hopefully a little wiser, than I could when I was 22-years old and thought I could save the world.  I realize now that life is much more complicated, but I still think that military action, though not a long term geo-political solution, can save lives in the short term when used cautiously and appropriately.  But I often times still have trouble dealing with that aspect of my life.  I feel like I didn’t do my job.  Most of all, I feel like I let my brothers down.

I skated.

That’s what we called it in the Marines.  It’s military slang that immediately makes sense to anyone who understands it, but if you need it explained to you, you’ll probably never understand it.  Picture a column of hot dusty Marines plodding up a road carrying rifles and packs, while somebody goes zipping by on a pair of roller skates.  That’s the visual you need to understand this.  A skater is somebody who got out of doing theirs, someone who didn’t carry their share of the burden, someone who didn’t have to “drink from the cup”.  But it’s more than not just doing your fair share.  It’s doubly bad because a skater isn’t just skating laps at a roller rink, he’s cruising on his skates while his brothers are humping packs. 

I had a very hard time coming to grips with this feeling.  I mentioned that I was discharged in 1999.  These feelings got even tougher to deal with a couple of short years later after 9/11.   Here I am, safe at my desk at the engineering company I worked for, eating a nice hot lunch (because, you know, I had a lunch break and access to hot food) scouring the internet looking for any information I could about my old unit, which was currently engaged in the Battle of Nasiriyah.  I trained those kids (and that’s what they were, kids) just a few years ago.  Every time I heard of a Marine casualty, I got a lump in my throat.  Was it Cottrell?  Did Chewie get it?  Maybe it was Young or Holmes or Wilson?   

It was in this context, in the grip of these emotions, plagued with this guilt, that I had a conversation that has always stuck with me.  I was at one of my good friend’s bachelor parties in Sylvan Beach.  I ended up spending a good part of the evening chatting with his father, who was a Vietnam vet.  I expressed to him how awful I felt about everything.  But I got something from him that I’ve never gotten from anybody else: understanding.  He knew why I felt the way I did.  He didn’t offer any simple platitudes, but he did say something that I’ll never forget.

He told me it wasn’t my fault.

It wasn’t my fault that I was born in 1976.

He told me that the simple fact of the matter was that I answered the bell.

I was there.  I went where I was told, I did what I was supposed to, and I did it honorably.  It’s not my fault that when I got to the far off lands I was sent to that nobody shot back at me.  I never shirked my duty, and I should never feel that I did.

Had I been born in 1922 like my grandfather, I would have answered the bell and fought World War II.

Had I been born in 1949 like him, I would have answered the bell and gone to Vietnam.

Had I been born in 1971, I would have answered the bell for the first Gulf War.

And had I been born in 1984, I would have answered the bell for the War on Terror.

And that’s the thing about answering the bell, you never know what you are going to get.  My grandfather answered the bell and got thrown into the hell that was the Pacific Theater.  I answered the bell and got four years of peacetime service and a trip around the world.

It’s not really fair what happens, but the results don’t really matter.  What’s important is the moral courage and the attitude that stands up to answer the bell.    

My friend’s dad told me that from what he could tell from my character, he knew I would have been right there alongside him in the jungles and the rice paddies.  To him, that was more important in some ways than actually being there, and as far as he was concerned, I had done my duty.  That would have meant nothing coming from most people, but coming from a Vietnam vet, that almost made me cry.

I still have days when I feel like I got off easy.  Like I skated out of duty.  I work with a guy who was a Marine in Vietnam and with a woman whose husband was a Marine sniper who recently returned from his second tour in Iraq.  I still don’t consider myself a veteran in the same sense that they are.  They certainly endured more hardship than I did.  But whenever I have these thoughts, I think back to that conversation in Sylvan Beach.  I think back to my final fitness report when I was a Sergeant of Marines where my platoon commander, who later went on to command troops in Fallujah and al-Anbar Province, wrote that of all the Marines he had ever met, I would be his first choice to take into battle.  And although I never did engage the enemy in direct combat, I know in my heart that had circumstances been different, I would have answered the bell in time of war the same way I did in peacetime: with every fiber of my being.

So where am I going with all of this?

I’m fighting my war now.

For the past four and a half years, my wife has been suffering with a chronic illness.  She is disabled.  She is almost entirely housebound, and some days, bedridden.  I am her sole caregiver.

I have no specific desire to get into the details of her illness now.  There will be plenty of time for that in later posts.  Right now, suffice to say it’s a condition you’ve never heard of, it’s not anything that would make any sense to you, and you have no idea of how much it has devastated her life.

I wish I could tell you she had a disease that you had heard of, that had a colored ribbon or a popular walk-a-thon associated with it.  You would understand that, and many of you would get to work wearing a ribbon or raising money walking.  But it’s not something you could understand like that.  That makes it all the more difficult because for the most part, it’s a war we fight alone.  When I tell people at work that my wife is disabled, they inevitably ask what’s wrong.   I think to myself, “Do I really want to spend the next 20 minutes explaining her condition to someone who is not going to understand?”  And it’s not that they don’t understand because they’re stupid or because they are horrible selfish people.  It’s because it is hard to understand and I often don’t fully understand it myself.

I just know that she is very, very sick.  She is less functional than my mother who is going through chemotherapy for Stage 3 lung cancer.  One co-worker did understand once, because his best friend is going through the same ordeal.  He kind of just took me aside after I told him about my wife to offer some encouragement.  He told me how he grew up in his house with his stepfather who was a quadriplegic.   He told me that it is difficult, but having a disabled family member often leads to blessings that most people don’t get to experience.  I told him that yes, I did understand this on an intellectual level, and that I had experienced some of these blessings, but that it didn’t make it any less difficult at times.  He said he knew.  He knew because he saw that his friend, who has this same illness as my wife, had a poorer quality of life on a day-to-day basis than the quadriplegic stepfather he grew up with.

Think about that.  My wife feels sicker than someone with cancer, has less quality of life than someone who cannot use their arms or legs, and I can’t even really talk to you about it because it’s a condition that you’ve never heard of and it would make your head explode if it were explained to you.

As bad as that sounds, there are two other factors that make it even worse.  First, the illness is invisible.  My wife looks fine.  If you saw her, you wouldn’t think a thing was wrong with her.  Part of that is her pride and dignity, which you can’t fault her for because most of us would do the same thing.  Her grandmother recently died, and through a herculean effort, she made it to the funeral (more on these difficulties in later posts).  She looked great at the funeral.  She’s an attractive woman, and it was important to her to look presentable as sign of respect to her beloved grandmother.  That’s what people saw.  What they didn’t see was that after expending that effort, she spent the next three weeks (and counting) in bed.   

The other unfortunate circumstance is that her illness is chronic.  People will often tell her, “Oh, be happy you don’t have such-and-such disease.”  I know it’s well meaning, but it’s an ignorant thing to say to someone who is chronically ill.  Many housebound, chronically ill people would trade places with someone who is terminally ill.  It’s in the root of the word.  Terminal illnesses end.  She often suffers just as much on a daily basis, without knowing if or when her suffering will end.  As of now, it looks like she might continue to suffer until natural death (she is currently 34).  Now you might be thinking to yourself, “What a terrible attitude.”  I’m a marathoner.  Imagine running a marathon, and then having somebody tell you, “We changed the race course, the finish line has been pushed back.  We’re not sure how far it’s been pushed back, but the race is going to be a LOT further than 26.2 miles now.”  How would you feel?  In the comfort of the chair you are sitting in right now, you might think, “Oh, I’d just buckle down and keep going.”  I’d love to hear what you’d actually say on Mile 19.  I’d bet that you’d be singing a different tune then.  It reminds me of a psychological tactic we used to use during physical training in the Marines.  Instead of telling the platoon that we’d be doing 20 pushups for our next exercise, the corporals or sergeants leading the exercise would just say, “We are going to do many, many of them.”  You can count down to 20.  You can’t count to “many, many”.  It really does make the physical exercise seem harder.

Now don’t get me wrong.  I am in no way, shape, or form suggesting that those who have cancer, serious spinal cord injury, or any other disease or condition are in any way better off, not suffering, or unworthy of our utmost respect and sympathy.  Nor am I saying that I wish my wife had any of these other diseases, injuries, or conditions.  They are horrific situations that I wouldn’t wish upon anyone.  I am simply saying that the chronically ill also deserve the same respect and dignity as those whose disease has a recognizable name. 

But the real triumph here is that she keeps going with hope and a sense of humor.  The people who suffer from disabling chronic illness are the absolute toughest people that I know, and between my time in the military, my athletic hobbies, and my current career in the construction industry, I’ve met more than a few tough guys.  The chronically ill endure horrific pain and suffering, they do it with no end in sight, and they do it without an ounce of respect from society.  That’s the purpose of this blog.  To give a voice to those who have none.  To shine a light on these people who deserve our admiration and respect.  To let the world know their stories so that they may not suffer in vain.  I also hope that it can give encouragement and advice to the chronically ill and their caregivers.

The story, of course, will be told through the eyes of her caregiver.  That’s one thing about the sick.  They are often too sick to even tell their own story.  In some ways this may be beneficial because not only will you hear the story of the chronically ill, you will see the effect it has on families.

In boxing, most of you know that between rounds the fighters retreat back to their corners where they will get a brief rest, a swig of water, some coaching or encouragement from their manager, and medical attention from their trainer if needed.  When the bell rings to start the next round, they have a choice.  They can stay in their corner, and if they are unable to continue to fight, their trainer will wave a towel, or toss it to the center of the ring.  They can throw in the towel.  Or, if they want to continue to fight, they must stand up, put their hands up, and walk to the center of the ring.  They can answer the bell.  You never know what you are going to get when you answer the bell.  You might win the next round.  You might get knocked out.

My mother-in-law bought my wife one of those little bells that you might find at a diner to alert a waitress that an order’s up, or on the desk of the Post Office or some place with a little sign that says “Ring for Service” or something.  She got it half-joking for our kitchen because it can sometimes seem like a diner in there (more on this in later posts).  Now, we leave it next to my wife’s bed so she can call me if she needs me (I sleep on the futon in the living room for reasons that will become apparent in later posts).  That bell rings far too often.  Too many times has that bell been rung in suffering at some horrific early morning hour, to alert me that she needed assistance.  It has conditioned a Pavlovian response in me.

It’s been 20 years since I was an 18-year old kid who shipped out to boot camp, ready to take on the world.

I’m still answering the bell.