Day 373. Energy

Atlas sculpture, New York City, by sculptor Le...

Did you notice?  I missed a day. Day 374…completely gone. One whole day of important writing I could have done.  If I don’t finish a book, you’ll know why.

It was for a great reason.  I saw my oldest, dearest friend, Scott, yesterday.  We went out for lunch and celebrated his good health — he’s recovering from an ungodly illness that makes mine pale in comparison.  We hadn’t seen each other in many, many years, and it was just uncanny that we would find each other again and both have these awful illnesses at the same time.  We compared scars and all.  Mine are bigger and uglier.

That was worth missing some writing for.  I have a hard time remembering to keep things like that in perspective when I am trying to write, in pain and fatigued. It doesn’t seem like a lot to ask — to have the energy to go out for lunch, walk across the street to and from the parked car, and then hang out at home for a couple of hours.  Even after a nap, it seems like I’m not demanding much, then, to write a blog entry and then about four pages of my book.  No going, though.  (A normal person would give up, put the computer away, and enjoy some crap T.V. or read a book.  Not me.  I stared at that screen for hours in a cold sweat.)

I have been learning this energy lesson gradually now for more than ten years, and nowhere has it been a more difficult lesson than with my friends.

I have many good friends.

When I got sick, though, I began to feel like I was turning into the statue of Atlas, as though doing any single thing more would add to my load of holding up the world.  Just the act of going to work all week was such a drag on my dwindling energy that the simple, kind request of a friend to go to happy hour sent me into a spiral of angst.  I knew I wanted to go but also that I could not possibly drag my foot forward another centimeter.

My college and graduate school friends had to develop a great deal of understanding about the situation, having long ago known my party girl self. I used to be the one who instigated the fun, who extended the night the latest.  Now I have become the one who always says I can’t go out or that I have to leave early — or I just plain cancel the plans at the last minute because I am too sick to go.  Soon enough, people have eventually stopped remembering to call me.  It must have seemed like I didn’t like them very much. Newer friends, like the people I worked with at Northern Virginia Community College never knew me when I was not at least little bit sick, a little bit tired.  So they have not been so easily offended when I have declined invitations.  Still, never going out with the people you like the best is no way to make friends.  (Consider this: I am an equal opportunity decliner.  The people I like best obviously includes my family, and I have missed birthdays, Christmas, Thanksgiving, lots of things, because I didn’t feel well.)

Usually, work at the college was too busy to go to lunch with friends because we all had to teach, meet with students, or attend committee meetings.  However, on Friday afternoons, few classes met, and colleagues would sometimes be on campus and go to lunch. The week before school started was also a big lunch-going time.  I remember fall 2006 keenly because all the colleagues I thought were my friends had made lunch plans without me.  I sat at my desk and cried like a sixth-grader.  It felt just like sixth grade too, and I laughed at myself as I cried at how silly I had been to take the situation so seriously. I could logically see how they would exclude me.  They had no idea how grave my condition had become, and I had no explanation for them about how it had become that way.  So I sat at my desk and worked instead.

As I have gotten sicker, I have become even less connected to friends.  It has felt, and frequently still feels on bad days, like social events with friends and family (particularly among large groups) are so taxing that I need several days of quiet rest between them or I feel sick for a long time.  Even answering a lot of email at once makes me feel like I have been shouted at (please don’t stop emailing me, though!  I will answer you!).  I feel engulfed in the many tasks involved in answering those many emails.  It feels like it will take hours, though when I finally get to it, it only takes a matter of seconds to respond to most messages.

I went to the mall today, on Saturday, with my parents.  The walking was difficult for me — we went only about the distance of three city blocks.  The difficult part is afterwards, about an hour later, all the joints from my hips downward are in agony.  But also the number of people in the place drains my energy.  By the time we left, my body was like a dried out hunk of bread, crisp and crusty, barely able to move.  I had to rush home to the heating pad and a huge lunch (I get really, really hungry, as though I have run a marathon) and then to send my parents away, God love them.  I just had to be in a quiet place.  No voices.  I went almost immediately to bed.  All I could think of was “Thank God I don’t have to do anything until Monday.”  If anyone — the President, even — called, I would just say, listen, it’ll have to be Tuesday.  I’m booked this weekend and on Monday I have a doctor’s appointment.

All I can think of is I will sit as still as a statue in this amazingly comfortable memory foam bed, against this astonishingly soothing body-sized infrared heating pad and not move anything for the duration.  (Of course a thousand interruptions occur: I forgot the damn phone.  I get up.  Then I get comfortable again.  Now I forgot the damn cell phone.  Same routine.  Then I realize the remote for the T.V. is across the room.  Same deal.  What else?  What else?  I try to make it perfect.  This is my command module for the night.  I don’t intend to move again until it is absolutely necessary.)

375 Days. What is VEDS?

In 2008, after being sick for a several years with an illness nobody could explain, I got an unpleasant surprise: an aneurysm ruptured in my leg, causing a lengthy recovery and permanent nerve damage and severe pain, the kind that awakens me from sleep screaming sometimes or collapses me on the floor, holding the leg.  The result, however, was that I was finally diagnosed with a genetic disease, Ehlers Danlos Syndrome, Vascular type (VEDS), a rare disease (about 250, 000 people total are thought to have it).  At least I knew why I was sick.

EDS causes a defect in the body’s formation of collagen that can cause hypermobility in joints (being able to bend the thumb down to touch the bone under the wrist, for example, and all varieties of unusual double-jointedness, depending on the way the disease affects the individual), and constant pain.  But more seriously in VEDS, that malformation also occurs in blood vessels, which frequently causes them to balloon, forming aneurysms, and dissect, which is to tear.

Existing treatments for aneurysms are advanced, requiring no traditional surgery. Stents can be threaded through a small incision in the groin and brought (using a micro-camera) to the site and used to replace the vessel that is damaged. This is remarkable, and the best treatment available, since no specialized medication is available for VEDS. Avoiding surgery is critical, since doing surgery on someone with VEDS is comparable to trying to sew on wet toilet paper.

Unfortunately for me, though, according to my doctor, my aneurysms are in places where stents would not be effective.  Several of my aneurysms are on the renal arteries (near my kidneys), and the most dangerous one is on my superior mesenteric artery (SMA) (below the aorta).  This is where arteries are huge.  For comparison, the aorta is the size of a garden hose.  Making the tiniest surgical mistake on the SMA would be immediately fatal; the surgeon explained that in the case of fixing the aneurysm surgically, the risk outweighs the benefit.  If it ruptures, I will die immediately, before anyone possibly could fix it.  Thus, my predicted shortened lifespan.

Here’s the good news:  unlike many people my age, I have low blood pressure, which means less pressure on the aneurysm to grow.  Having consulted with a nutritionist, I am a vegan (gluten-free as well) and I eat a reasonable amount of protein and take many (excellent quality) vitamins and nutritional supplements for maintaining my health (and I’m happy with the brand I’m using). Not eating garbage, especially meat with hormones of all kinds injected, is very important.  I believe taking these important steps will lengthen my life beyond that doctor’s flip prediction.

What do you think?  Do you agree that my diet may have an impact on my lifespan?  How about my use of nutritional supplements?  Do you use them?

375 days.  Tick, tick, tick.

376 days. The clock is ticking.

What would you do if you found out your days were numbered?

Would you quit your job and travel the world?  Could you?

Would you speak more kindly to your family?

Would you finally learn to paint?

Would you write that book you have been meaning to write?

I have had to consider these questions deeply (and on the surface) for the past three years.

Almost exactly three years ago to the day, when I was 44, a doctor I had never met walked into the examining room where I sat, greeted me briefly and said (in the voice of Bill Lumberg from the movie Office Space), “Uh, yeah.  I’ve seen the pictures you brought in, the MRA, and I just want to be up front about this.  An aneurysm this size, on a woman your age.  Look, you probably can’t expect to live much past 48.”  In tears, for the most part, I missed the rest of his callous speech. He is the expert in the field, having literally written the textbook on how to do surgery on people with my disease; so it was hard for me to dispute his opinion. Then, to add insult to injury, he told me that because I was crying so much, I was probably depressed.

Wouldn’t you be?

He did do me a great service that day by making me very angry.  I intend to prove him wrong.

So, knowing all these things, have I changed my life considerably?  Well, yes and no.  Even though I had just completed my Ph.D. and was optimistic about my job as a college professor at Northern Virginia Community College, I had to stop working.  That was devastating.

I have gotten much closer to my family, and I try to remember to really look at them (I guess to memorize their faces for eternity) and understand them a little bit better than I ever have before.

My friends are a different story.  It’s hard to keep in close contact with friends when you’re sick all the time, and you never know whether you will have to cancel plans because you just don’t feel well.  But I’m making a real effort to socialize on different terms.  I’ll talk more about that in an upcoming post.

Heidi's Watercolor 8-19-11

After going through a period of real angst, though, I realized that I had a great deal of time on my hands to do what I had always wanted to do:  write.  Writing is very hard for me since I had my aneurysm.  It takes a very long time.  I had to go from writing a sentence a day to a paragraph a day to a page or two a day (I can’t do much more than that without becoming exhausted).   But I don’t love it any less.  I also have always wanted to learn to paint.  So I took an online watercolor class with my friend John, and I found that I love to paint.  Now I have a big box of paints and a number of books on the subject.  I’ve framed some paintingsand given them as gifts (which means the poor recipients are stuck with them and have to hang them up).

So this is what I’m doing so far, 376 days and counting.  I want to prove Dr. Mean wrong, but just in case….some days, as I try to finish my book, and I don’t feel well or don’t feel like writing, I tell myself, “Hurry, hurry…no time to spare.”