I cried over supper tonight

Nothing I do is enough. Whatever I’m doing, it’s the wrong thing. Whatever I do, it’s keeping me from doing something else I should be doing, or wish that I was doing.

“It’s not your fault,” Mark says. “I’m not helping you, I can’t help you enough. I’m sorry. I hurt too much.” 

  

   

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Anyone else’s funeral

IMG_4446If it had been anyone else’s visitation, Aunt Chyrell would have greeted me in the funeral home with a compliment on my outfit, or my earrings, or maybe my hair. She wouldn’t just have been trying to be nice–it would have been a genuine and heartfelt expression of admiration.

By way of greeting, I would have hugged her–gently so as not to cause her distress if she was having a rough day of pain.

She would have asked me how Naya was, and where she was staying while we were gone. She would have turned to Mark and asked how he was feeling, anticipating his answer based on her shrewd, but never unkind, observation of whether he looked rested and relaxed or tired and in pain.

She would have snagged someone by the arm and brought them to meet me, delightedly introducing me as her niece. She would have mentioned that she was the first one who got to hold me when I was born. She would have told me, with equal pride and delight, that this person to whom she was introducing me was one of her “theater kids,” or perhaps a relative I hadn’t met before.

In spite of the shared sadness of a lost loved one, she would have made me feel warm, and loved, and special.

Later on, she and Mark would have found more time to talk. In the hallway, perhaps, or off in a corner, the two of them would have commiserated on their shared, but invisible, chronic fibromyalgia pain. They would have compared notes as to how their doctors had treated them, and what medications had most recently been prescribed.

If it had been anyone else’s burial, Aunt Chyrell would have reassured me that no one would notice or mind that I had worn the exact same outfit to the visitation the night before because I couldn’t think of anything else that was appropriate. She would have exclaimed over Naya and how big she has gotten. She would have noticed and celebrated the way Naya brings joy and love to Mark’s eyes even as holding her would be causing him obvious pain.

No doubt, at both the visitation and burial, she would have made others feel warm and loved as well, saying hello, noticing and remarking on pretty scarves or hairstyles, expressing her condolences, providing Kleenex. To her, I was special… and so was everyone else.

But it was Aunt Chyrell herself lying there in the casket: her kind, strong, strong-willed, generous, loving, certain, secure, and vibrant presence suddenly stilled and gone.

In the aching emptiness she left behind, the best I can hope for to keep her memory alive is to keep her love alive, to emulate what I loved about her.

 

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I’m no warrior

The following is a guest post from Mark. It is a series of thoughts written over the course of several days.

11/10 – There are a lot of references these days to military veterans as “warriors.” Today, I’m no warrior. A warrior doesn’t feel like a two year-old in the middle of a tantrum.

Most days I am able to hold myself together. Some days it’s harder. Today I received a call from a group who helps veterans with disabilities. After the call I looked them up online. As I read their Mission Statement I suddenly began to cry. It was the same cry that told me a few years ago that I needed help for PTSD: A hard, sudden cry of “I can’t take this pain anymore.” Today I wanted to kick and scream, yell and rage. I am lonely but don’t want anyone to come around, and I’m in too much pain to go anywhere. I was glad nobody came by to see me. They probably would have come over because they felt bad for me but would soon discover I already had that covered.

A warrior doesn’t break down in the fight. I am broken, physically and emotionally.

~~~~~

11/11 – I’ve arrived at another Veterans day. It feels a lot like several recent Veterans days. I remember not so long ago lying in a hospital bed and being surprised when a guy from the American Legion came in to wish me a Happy Veterans day. I appreciated the visit but was not really very happy. This year I am in so much pain I’d rather be sound asleep, hoping for another, better day. (I wonder how many other Veterans are alone with their pain today?)

But I am not asleep. I am awake and I am a Daddy. I can’t just check out and hide until the pain passes.

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As part of my PTSD therapy, I had my Liberation of Kuwait medal tattooed on my shoulder. After years of hiding my medals in a drawer, I realized that military service makes up much of who I am.  I can’t hide from it. I am a veteran, and I am also a Daddy.

I needed some information from the VA today, but they didn’t answer the phones… Happy Veterans Day. As my wife joked, “We don’t serve our Veterans on Veterans Day”.

~~~~~

10/13 – Today I have a telephone appointment with my primary care doctor at the VA clinic at 10:00 am. I need to know how and when my conditions are to be treated and she is the one that is supposed to coordinate that treatment.

Time will tell, but if I need surgery for both my back and for the arterial blockage in my gut, several folks tell me that those surgeries will have to be done in sequence. If the chronic mesenteric ischemia (blood flow in my abdomen) requires surgery, it will have to be done before any surgical procedure on my back. This is not the greatest news to me because the pain in my back is so severe.

I have been sitting at the dining room table since 9:50 a.m. and it’s nearly 11:00 now, but my doctor hasn’t called. (I did try to call and was told she must be still with a patient.) If I weren’t in such need of the VA’s help I would have taken a nap instead. I have never been one to bash the VA as they have helped me numerous times, but they are making it really hard now. If I am an hour late to an appointment they move on to the next patient and they should. What does the veteran do when the VA is an hour late to appointment? If I miss a VA appointment, I receive a “you failed to appear for an appointment letter” a few days later. Can I send one to the VA if they fail to appear for my appointment?

Update: We found out later that my primary care doctor did try to call at least twice and did leave me a message… on my work cell phone. I had specifically told the lady who scheduled the phone appointment to have my doctor call my personal cell as I am not working and would not have my work phone available. This information, and the phone number I supplied, was obviously not given to my doctor.

I’ve been thinking about finances in the last few days. The prospect of a long recovery has me worried. I don’t know how I will pay the bills if this extends too long. I don’t know where I can get help if we can’t make ends meet.

~~~~~

11/16 – How much must a man suffer? How many humiliating walks must I make out of another ER after being told everything looks fine? How many kicks when I am down do I have to take, how many comebacks can I make? Today my employer’s disability center called and denied my short term disability.

I feel like my military service has placed me and continues to place me at a severe disadvantage. I don’t want to stop working in order stay healthy; that’s a load of rubbish. I also don’t think being retired or something like that is the answer.

I have been trying for so long to understand what I can or should learn from all this. I think I understand better every day the Vietnam veterans who have become mean and angry. I’ve just about stopped caring if anyone understands what I’m dealing with.

Here is how it feels to me: Most Americans support our troops; just not once they transition from active military to veterans. Then we are just like anyone else you’d pass on the street, maybe thinking, “He looks nasty and a bit frightening.” In fact, I’m starting to be glad you’re a little afraid. It’s time to admit the truth. Our veterans get frightened, shot at, sick, and die for you every damn day. You don’t see it or hear about it because often it’s a veteran not a troop who’s dying. Often our stories end like this: “There at the end when he couldn’t hold a job….”

What the f**k are veterans for… so you get a holiday to assuage the spot inside that says “I didn’t go because of (fill in the blank)?” Veterans get bullshitted everyday. Nobody’s going to take care of us. It wasn’t budgeted into the cost of the wars. We are valued like bullets… spent shell casings bent too badly for reloading.

Mothers and fathers, are your sons or daughters considering military service? In my opinion, this country doesn’t need another veteran. We don’t have a clue what to do with the ones we already have.

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What do you want from me?

It’s Veteran’s Day again. Facebook is awash in tributes, photos, and images honoring our veterans. As I suppose it should be. I thought about scanning and sharing my favorite photo of Mark from when he was serving in Desert Storm.

But I’m really tired, and moody, and a little bit heartsick, again. Mark, my own beloved veteran, is in unrelenting and often excruciating pain, again. It’s physical as well as emotional, because what loving and devoted Daddy wouldn’t be distraught by not being able to pick up and play with his toddler because it hurts too much?

This is where we are this Veteran’s Day: Mark is unable to work because it’s impossible to sit in a chair and focus while in the kind of pain he’s experiencing. (It’s mostly lower back pain, but also continuation of months of abdominal pain.) When this pain crisis started a few weeks ago, he called the VA. He was in so much pain they said he should go to our local ER. The ER doctor said, “What do you want from me?” He was given a shot of painkiller and sent home.

Then Mark tried to get an appointment with his VA primary care physician at the clinic in Rockford. She was out of the office, so he was given an appointment with a PCP whom he’s never seen. (Apparently, one of the efforts to have veterans seen in a timely manner now is to give them the first available appointment with any provider.) After a cursory exam and questioning, this physician recommended physical therapy. Mark asked if that could take place somewhere close to our home instead of at the VA clinic which is 50 minutes away and riding in the car was too painful, let alone driving. The doctor said no, the physical therapy had to take place at the VA clinic. Mark said there was no way he could do it as the drive would be too painful and require him to take too much time off work (almost a half-day for every appointment).

Mark’s manager at work expressed (understandable) frustration at the time Mark was missing and (disappointing) lack of compassion for his plight, telling him he was hurting the project and the team by being unreliable. (Ironically, a more senior manager on another team–whom Mark works with extensively–noted that the exemplary job and extensive workload Mark was carrying was all the more obvious during his absence). His manager started the process to put Mark on disability and told him not to work.

So Mark tried again to make contact with his own VA primary care doctor. Now he was in a hurry, because he was still in too much pain to return to work, but under pressure to go on disability if he was to be out much longer. In order to be approved for disability, a physician must fill out and sign off on paperwork. His doctor was still unavailable for an appointment but communicated via her nurse that she wouldn’t address any disability paperwork until Mark went to a pain consult at the Madison VA. The nurse also noted that Mark had “refused” physical therapy. Mark tried to find out when the pain consult appointment was to take place. No word.

Still in pain, still under pressure, and fearful for his job, Mark made appointments with his chiropractor and our local family doctor.

In the meantime, Mark and I both traveled to Madison for a previously-scheduled (before the back pain crisis) abdominal CT scan. While we were there, we visited with the patient advocate regarding the need for Mark to be seen by his primary care physician to figure out why the pain was so much worse and how it could be treated, and to take care of the disability paperwork.

Two days later, probably in response to escalation by the patient advocate in Madison, Mark had an appointment with yet another primary care physician (not his own, who has been compassionate and at least knows his history) at the Rockford VA clinic. I couldn’t go, so a friend drove him to the appointment. Mark took the required disability forms with him. This doctor didn’t examine Mark or question him about his pain. He informed Mark of the date for his pain consult in Madison (three weeks away), which was the first Mark had heard of it. He also said, with clear sarcasm, “You have chronic pain. What do you want from me?” Mark managed to contain his disappointment and fury, and left without bothering to ask about the disability paperwork.

Back at home, the chiropractor x-rayed Mark’s back, worked to alleviate his pain, and referred him for an MRI. Our family doctor referred him to an orthopedic specialist and to a local physical therapist. Both the chiropractor and family doctor unhesitatingly expressed willingness to clear Mark for disability based on his obvious pain. (Why wouldn’t either of the two VA PCPs Mark saw do any of these things?)

In the midst of all the appointments, Mark’s VA gastrointestinal specialist in Rockford called with the results of the abdominal CT scan. It turns out that the years of gut pain, discomfort, and diarrhea may have an explanation beyond irritable bowel syndrome. One of the three main arteries that supply blood to his intestines is blocked. I have a new medical term to add to my arsenal: Mesenteric artery ischemia. The GI doctor said someone from the Madison VA hospital would call regarding treatment/surgery. That was over a week ago. Incidentally, the National Institutes of Health’s MedlinePlus website says “Acute mesenteric artery ischemia is an emergency.”

The results of Mark’s MRI (conducted within just one day of the referral by his chiropractor!) show significant changes in the lumbar area of his spine from just a few years ago. He might need surgery.

That’s where we are on this Veteran’s Day. My Army veteran was in bed at 7:30 p.m. with back and abdominal pain. He tried to call the VA today to ask about treatment for the blocked artery, but no one answered.

After all, it’s Veterans Day. The VA is closed.

Update on 11/14/14:

  • Both the local chiropractor and physical therapist say Mark needs to be evaluated further for back treatment. Neither chiropractic adjustments nor physical therapy are appropriate until this takes place. Mark is still in excruciating pain.
My veteran on a little R & R back in the days of Desert Shield/Desert Storm. Mark says they received their desert fatigues just before they came back home. "E.T.s" is what they called themselves in their greens: easy targets.

My veteran on a little R & R back in the days of Desert Shield/Desert Storm. Mark says they received their desert fatigues just before they came back home. “E.T.s” is what they called themselves in their greens: easy targets.

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“I think I was exposed to nerve agent.”

A few years ago, or maybe it’s been several, Mark had his first “pain consult” at the Madison VA Hospital. I went along, with my usual high hopes that maybe THIS time the doctors would offer us a new thread of hope: some sort of answer that would lead to effective treatment of Mark’s cascade of symptoms.

The pain consultation was pretty fascinating, actually. We were in a room with at least five doctors, all with different specialties. One of them carefully examined Mark, poking, prodding, manipulating his limbs and checking his reflexes. All of the doctors asked extensive questions about his symptoms. I remember thinking the brainpower in that small exam room seemed almost palpable. Towards the end of the session, I vividly remember one doctor asking a question no doctor before or since has ever asked. “What does Mark think?” I don’t remember his specialty, but I remember that he was a UW Madison doctor with an interesting overseas accent. Mark was caught off guard by the question, and asked him to clarify. “What do you think happened?” the doctor asked.

“I think I was exposed to nerve agent,” Mark said.

At the time, it seemed like a far-out theory to me. I wasn’t there in northern Saudi Arabia, of course, when the nerve gas alarms went off. But people who are exposed to nerve gas pretty much drop dead, don’t they?

Or maybe not. Maybe, if the exposure is slight, their nerves are “on fire”–as Mark has often described–for the rest of their lives. They hurt like hell all over when there seems to be no reason for it. Their sleep mechanisms are disrupted so they can’t sleep at night and struggle to drag themselves through the day. Their temperature regulation is addled so that they chatter with cold bundled in a dozen layers of clothing, yet break into a clammy sweat for no apparent reason. I could go on.

I don’t remember what came of that pain consult. Nothing earth-shattering; probably another change in medication. There have been other pain consultations since, with the same results. No other doctor has ever asked what Mark thinks may have happened to cause his illness. The exposure expert at WRIISC (the War Related Illness and Injury Study Center) in East Orange, New Jersey did not find much credibility to the idea that service members in Operation Desert Storm (outside of the known Khamisayah incident) could have been exposed to nerve agents.

And now there’s this. This article gave me the shivers, especially that part that reads:

“In the first study, civilian weather satellite images from the National Oceanic and Atmospheric Administration (NOAA) reveal a massive fallout cloud rising from the bombing of Iraqi chemical weapon storage facilities near Muthanna and Falluja, Iraq on the third night of the air campaign, January 18-19, 1991. 

The fallout plume then traveled more than 350 miles and stalled over U.S. troop positions in northern Saudi Arabia, triggering thousands of nerve gas alarms.”

The entire article is well worth reading, but if you don’t, here’s another bit that will make you think:

“This is being dubbed by some as the largest example of “friendly fire” in American history, because the so-called nerve and blister agents that dropped on American troops were supplied to Iraq by the U.S. before the Gulf War. These chemicals were then bombed by U.S. forces, which lifted them into the atmosphere and dropped on our own troops.”

Many thanks to Gulf War veteran Anthony Hardie, creator of 91outcomes.com, for continuing to diligently follow the research, articles, and legislation affecting his fellow veterans. It is his blog that led me to this article, and to a wealth of other information that has helped Mark and helped us both understand his illness.

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Leaving early

We went to a fancy dinner event tonight. It was amazing. It was held outdoors in an enormous tent… there were white tablecloths, wine, elaborate floral arrangements, mingling, and one of my favorite foods: beef tenderloin. It was the sort of event you RSVP for weeks in advance.

Ever since Mark’s illness started shaping our lives, RSVP-required events have given me fits. Not knowing from one hour to the next how he will be feeling makes committing to attending a wedding, birthday party or other such event a few weeks before it happens is risky business. Many an RSVP card have languished under a magnet on our refrigerator door as I tried to decide how to handle the invitation. Not responding promptly makes me feel guilty. Not responding at all makes me feel like a heel. Saying no to a celebration that would be an enjoyable way to catch up with friends or family is depressing. Committing and not showing up just doesn’t seem classy. What to do?

So when the invitation for tonight’s event arrived and Mark said it sounded like fun, I said a silent prayer, marked the date on our kitchen calendar, and filled out the response card. “Think positively,” I thought to myself as I dropped it in the mail.

Then this week arrived. It’s been a brutal and exhausting week for Mark, physically. I could see our chances at making it to the event slipping away. I e-mailed the host to say we were still planning on coming but if we weren’t there, it was because Mark wasn’t feeling well.

Then today came. Mark was very, very tired after work, but we dressed up and went anyway. I drove and he struggled to stay awake both in the car and when we arrived. It was a beautiful and well-planned event, though, so despite his fatigue we soon found ourselves enjoying great food and conversation.

I could see he was crumbling when the second speaker of the evening stepped up to the microphone. “I have to go home, sweetie,” he whispered to me. I wavered for two to three more speakers, torn between the exhaustion in his eyes and the awkwardness of getting up and walking out while everyone else was settling in and pouring a little more wine. I hated to leave during the program and appear rude, plus I had seen a couple more people I was looking forward to chatting with before the evening was over.

Finally, we left. Timing our departure to take place during the applause between presenters, we walked out the nearest tent opening. As we made our getaway, I couldn’t help but remember the wedding receptions, concerts, and birthday parties we’ve also left early. In fact, since Mark has been sick, it seems we leave everything early.

I guess leaving early is just something we’re going to have to live with.

But doggone it—we missed dessert.

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When trivial problems loom large

I’m frustrated right now, and in the overall scheme of things I probably shouldn’t be. On top of being frustrated, I am feeling sad and helpless, emotions that in this case ARE appropriate in the larger context.

My frustration is caused by the fact that Mark’s manager called today (Sunday afternoon) to let him know that because of a decision made higher along the food chain in his company, Mark must report to work in an office an hour’s drive away tomorrow and for the foreseeable future. Before you roll your eyes and say, “So what—lots of people commute that far and further every single day,” I’d like to remind you that Mark has serious chronic pain, chronic fatigue, and irritable bowel syndrome that sometimes means bathroom sprints several times a day. Working from a “virtual” or home office has been the only reason he’s been able to remain employed for the past few years.

The sadness and helplessness stems from the fact that our neighbor is apparently in the final days of his long fight with cancer. We’re losing a terrific friend, an amazing person, and someone who has always been a great neighbor in every sense of the word. Ever since his diagnosis some years ago, we knew this time would come. Contemplating the world without him and the grief and loss being experienced by his family make our annoyance with the decree that Mark must drive to an office tomorrow morning seem pretty trivial.

And still, I must vent about the lesser issue at hand.

Mark works for a major Fortune 500 company. He’s good at his job as a project manager. In fact he’s outstanding. He’s a fast learner, therefore quick to retain and understand the quickly-evolving and highly technical nature of his industry. What clinches his value in his role, though, is his amazing ability to lead and motivate people and get them working together to get things done. He sees the big picture and what has to happen each step of the way for the project to coalesce, and by power of his personality, helps to make it happen. He lets people know they are valued, and in turn they work harder. I hear him on conference calls all the time. I have no idea what he is talking about, but his technical understanding and people skills are obvious. He cares about getting the job done, but he cares about people, too.

Here’s the thing. None of what he does, NONE of it requires that he be in an office building. In fact, the office building he’s been ordered to report to houses no one who even works in his group. Whether he’s here at home or in an office an hour away, he will sound exactly the same over the phone to the folks he works with daily. We live in Illinois. His manager and several others he interfaces with on a daily basis are in Minnesota. Others are located all over the United States. Commuting will NOT facilitate face-to-face communication with his coworkers, nor will it provide him access to anything he doesn’t already have in order to do his job: a computer, printer, desk phone, and cell phone. In fact, by going to an office in the city, he will be hampered by the lack of two extra monitors and other peripherals he’s purchased on his own so that he can work more efficiently.

Commuting an hour means that by the time Mark arrives at the office, he is guaranteed to be in pain. The hour he will spend driving in the morning and afternoon would normally be spent in his home office, reading and responding to e-mail while sitting in a high-quality, ergonomic office chair, typing on an ergonomic keyboard—items also purchased on his own so he could work with less discomfort. If he’s commuting he can’t take pain killers strong enough to stave off the pain caused by driving… because he’ll be driving, and said pain killers are contraindicated while “operating heavy machinery,” such as motor vehicles.

Working in an office means that the nap he takes around lunch time each day is out of the question. Normal office workers may go out to lunch or to the building cafeteria. Working at home, Mark takes a 30-45 minute nap and eats lunch at his desk, usually while on a conference call. The nap makes it possible for him to get through the afternoon and still be productive.

Working in an office also means that if he experiences one of his all-too-common bouts of serious, repetitive diarrhea, he has to deal with it in a public bathroom, in a public building. If he makes it to the office before it happens. If he makes it to the bathroom once he has made it to the office. At home, this isn’t such a big deal. It’s annoying, but a shower and fresh underwear are a few steps away if needed. He retains his dignity. He can keep working diligently with no one having to know that some days involve 12 hasty visits to the bathroom… before noon.

Working in an office means not only will he already be in pain when he arrives, he will also be tired. City driving used to be second nature to him. Now it wears him out, utterly.

He tried to get official clearance—a medical waiver, so to say—from the company a year or so ago so that his status as a “virtual employee” would be official. But the paperwork got hung up in bureaucracy. His manager didn’t mind him working from home, so Mark continued to do so. Now, apparently, the matter is out of his manager’s control.

Mark is trying to stay positive. I, however, have lost that battle. I’m just worried and angry. Worried about how sick and beat up he’ll feel adding the commute to his already high-stress job. Angry because it’s so pointless. Some jobs, like mine, mean you have to be somewhere specific to do the job. Others, like Mark’s are such that you can be anywhere as long as you have a phone and internet connection. But, because of someone’s whim, Mark is going to waste time, energy, fuel, and productivity to drive to a building where no one there even works with him.

You’d think a cutting-edge company like this one would encourage telecommuting among its employees. So they own a nearly-empty office building? Maybe they should sell it, and quit trying to justify the space. They’ll increase employee productivity, save money, and reduce their carbon footprint all in one shot.

I guess my deepest, darkest worry is that the added pain, fatigue and stress he’ll endure will accelerate the pace of his illness and thereby the time that elapses before the day when—like my dying neighbor’s wife—I too, will be clutching hospice paperwork and trying to comprehend it through a blur of helpless tears.

Come to think of it, that doesn’t seem so trivial.

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