Thursday, January 31, 2008

Drama Queens - and Kings - Need Not Apply

With as many medical problems as I have, drama is never in short supply. I get so much of it, in fact, that I no longer watch movies that are dramas -- entertainment is supposed to be escapism, and the last thing I find entertaining is dedicating two hours of my life to watching fictional problems.

If only ridding myself of exposure to excess -- and even unnecessary -- drama in real life were as easy as turning the channel or popping out a DVD.

Lately I’ve been going through one of the phases in which my tolerance for other people’s drama is at a low point. Don’t get me wrong -- I’ve not become a jerk when friends or family face real problems. There is, and always will be, plenty of sincere compassion to share with those who face troubling times.

What’s pushed my tolerance point to breaking is the artificial drama generated by drama kings and queens. The royalty of misery come in two forms: people reacting way out of proportion with the size of the problem they face, and their more sinister (and trying) cousins -- people who work themselves into frenzies over problems that they don’t have. For some reason, there’s been no shortage of either around me lately.

The over-reactors are easiest to find in people who are sick -- especially men. Give some people the slightest ailment and they act as though they’re in the final stages of plague. Some people I’ve shared a residence with will be quiet when they’re sick -- until they know someone is listening. When that happens, they start in with enough moans and whimpers and grunts to qualify as a messed up opera, and the end up with a dent in their lips because the thermometer takes up semi-permanent residence in their mouth.

But the worst of this crowd are the drama vomiters. This is also a guy thing. Every man I have ever known, starting with my father and ending with my husband, can only throw up if he gags, retches, coughs, groans, and spits at full volume. This is, by far, the fastest way to turn off any genuine sympathy I have for how bad you feel.

Fortunately, the drama sickees have been in short supply lately. Instead, my cup runneth over with the dramatist wannabes -- those folks for whom a crisis and pity are as essential to their . If they have a progressive disease, they start freaking out over the absolute worse happening to them on day one. If their current level of illness isn’t dire enough to satisfy them, they go shopping around for a doctor who will give them the serious diagnosis they crave, and get angrier and angrier when they are old that their condition just isn’t that severe.

I just don’t get it. And you know what? I don’t want to.

Real problems, those I understand. So unless you have something real going on, keep your drama to yourself, please. And if you’re really eager for some, feel free to take some of mine -- I’ve got more than enough to go around.

Thursday, January 24, 2008

Half Full or Half Empty? I’m Just Grateful I’ve Got a Glass

I’m slipping into one of those periods when I have absolutely no tolerance for people who, from where I sit, are pretty darn well off yet seem obsessed with focusing on their “burdens.”

The need to take medications on a schedule is a good example. There’s a TV commercial for an osteoporosis medication that only needs to be taken once a month that portrays the alternative treatment -- having to take one pill a week -- as the most complicated, inconvenient task ever. And I recently saw a woman who had been given a new life in the form of a kidney transplant talk about how horrible it was to need to take her anti-rejection medication twice a day. Are you kidding me? I need to take anywhere between 35 and 60 pills every day just to function, some of which are taken every three hours. And I’m happy to do it -- these drugs enable me to function relatively free from pain, spasms, depression and infection. What’s to complain about?

Body image is another hot button topic. I’ve had it up to here with people with the most mild body imperfections whining about how devastating it is for them. The latest was someone with scoliosis (a side-to-side curve of the spine) talking about feeling terribly self-conscious in a bathing suit because she was sure everyone was staring. I have scoliosis, plus a 90 degree front to back spinal curve that makes me look as though I have no neck and thrusts my head forward, scars all over my body, and a Quasimodo-like hump in my left shoulder caused by a muscle graft. If I worried about people staring at me, I’d never get out of bed. I have to wonder how this woman with scoliosis would ever survive if something truly disfiguring ever happened to her.

The one that really gets under my skin is pain levels. My neurological problems have progressed so much that I now need pretty high levels of several narcotic pain medications to manage my pain. Leaving the house for errands or any size, from getting my hair cut to traveling to my doctor in Puerto Rico, come with a price tag -- my pain levels flare for hours or days, keeping me in bed until they calm down enough for me to get back in my wheelchair and start over again.

I’m not angry about this -- everything in life is about trade-offs, and that’s just the trade-off I need to make. What does make me angry is listening to people with a much milder neuro condition complain about how their pain levels go way up after playing softball with their kids, or how brave they are for dealing with their pain without prescription drugs. How can they be so blind to what incredible blessings those abilities are? Yet instead of hearing how thankful they are for still having the ability to run around with kids, or to get by with ibuprofen, conversations with them are riddled with comments about how hard their lives are.

I just don’t get it.

I have a new friend, who has it pretty bad off. She’s my age, and like me uses a wheelchair because of muscle tremors and weakness. But unlike me, her home is not fully accessible -- she must rely on a portable commode chair because she can’t get her wheelchair into her bathroom -- and she lives in severe, chronic pain because no pain medications work for her. But despite leading a life in which she’s lost her independence and her privacy, I’ve never heard her complain. When you talk with her, it’s clear that she’s so far beyond the debates over whether her glass is half full or half empty -- everything she does, every word she says makes it clear that she’s so incredibly grateful to still have a glass.

That’s exactly how I feel about my life. It doesn’t matter most days whether it’s good or bad -- it’s still mine, and I’m damn grateful to be able to wake up every day, even if those days are filled with pain.

I really want to be more tolerant, and to be able to embrace emotionally what I know logically -- that these problems are very real to these people, and that for them, these situations are the worst they have known. But there are days when it’s so very hard not to scream, “Do you realize how good you have it, not just compared to me but to so many people in the world?” I pray that these folks never have to look back on their current lives as the good old days, but I sure wish they’d be able to focus less on what they’ve lost and a lot more on everything they’ve got.

Sunday, January 20, 2008

Boy, Was I Wrong

A while back, I wrote an entry about finding a message board that I hoped would connect me with other people who have the same neurological problems I have, and how disappointed I was when I discovered that type of tethering covered addressed there is very different than the type that affects me. At that point in time, this disappointment about not finding my peer group (even if it is just one other person) left me feeling alone, again.

I could not have been more wrong.

Even after finding out that the site wasn’t going to be able to answer my questions about my tethering problem, I continued to stay and read. And in doing so, I discovered that the people who participated in the discussions were, to various extents, living my life -- they shared many of my symptoms, had the same hopes and frustrations, and could empathize, not just sympathize, with what it was like to go through life as me. It’s not the shared medical condition that makes someone my peer -- it’s the shared experiences.

And as it turns out, the folks on this message board share a lot of my experiences. I’ve found people who have had myelograms, people living in chronic pain and done battle to get the pain meds they need, and far too many people who have been told their problems are “all in your head” before their actual disease was discovered. There are wheelchair users, people who’ve had spinal fluid leaks, and even one young man who has a Baclofen pump. There aren’t words that will do justice to the feelings that come from being able to talk with people who really get it.

I knew I could learn things from these folks -- after all, they have conditions with which I’m less than familiar -- and I have. But what I didn’t expect is how much I’d be able to offer, and how satisfying it would be to be able to be helpful. My involvement on the site is the first time since I had to stop working in which I honestly feel like I am being useful. I’ve always been big about give back something to the world as a way of showing my gratitude for the good fortune I have -- be9ng active on this site has been a surprising way for me to do that.

I can’t believe how short-sighted I was to believe that I had little to gain from participating there. And I’m so grateful I figured out my mistakes before I walked away for good.

Friday, January 04, 2008

The Days the Earth Stood Still

Everyone has at least one moment in their life that they will remember with absolute clarity -- that point in which time stands still, and when the rest of the world seems to disappear, leaving only you. The most prominent of mine are the moments in which I was told that the doctors had finally found out what was causing all of my health problems, and what needed to be done about it.

The first time I experienced this was I the early afternoon on October 17, 1977. I was 14 years old. The last two years of my life had been a blur of unexplained symptoms (vomiting, weight loss, vision problems, painful stiff neck, dizziness, loss of consciousness, and both hands curled into fists due to profound muscle weakness and loss of control) and visits to more specialists than I can remember -- neurologists and neurosurgeons, orthopedic surgeons, rheumatologists, psychiatrists. Two years of tests that failed to explain anything. And two years of fighting to convince just one doctor that the problem causing me and my family so much misery was physical in nature.

At this moment, however, I had no memory of any of that. All I knew was that I was flat on my back on a hospital gurney, which had been placed into a small waiting room painted that particular shade of institutional green found exclusively in. I was in such severe pain that I was fading in and out of consciousness -- my cheeks were flushed and still wet from my tears. I had just been wheeled out of a radiology suite at Children’s Hospital of Michigan, where my neurosurgeons had performed a myelogram so they could examine my spinal cord for abnormalities.

After being left alone for a few moments, I heard a jumble of voices approaching. There were very few people I wanted to deal with at that point, so I shut my eyes tightly in self-defense and pretended to sleep until I could figure out who was approaching and what they wanted from me. As the group took their places around my gurney, I recognized that my mom and dad had taken up position on my left while my two neurosurgeons stood to my right. They were already deep in conversation as I felt my mothers soft hand reach out and rest across my forehead, a touch she had used to comfort me for as long as I can remember.

Within moments after gathering around me, the doctors announced their findings. “There is a large mass compressing her spinal cord. It’s quite long, and almost completely blocked the flow of the contrast material. We believe this is a cyst, and immediate surgery to drain it is warranted. The surgery is scheduled for Wednesday morning sat 7 am.” My mom choked back her tears and my father let out a deep, sad sigh before saying, “Thank you, doctors” in that tone of voice I now recognize as his logic voice, the part of his brain that takes over whenever his emotions threaten to overwhelm him. Those we the last sounds I heard before I let the shock from what I had just heard and the pain from what I had experienced carry me of into unconsciousness.

I remember very little of the time between hearing I needed surgery and being prepped for the OR except that I spent it flat on my back. (A significant amount of cerebral spinal fluid was withdrawn during myelograms performed at that time, so it was necessary to lie flat for 16-34 hours after the procedure while the CSF amounts returned to normal levels or risk debilitating headaches and other problems).

The morning of my first operation ever, my parent’s minister came to sit with us in the early morning hours before I was taken to the OR. I recall the relative quiet of the hospital at that early hour. I also remember how my mother, father, older brother and I were all equally nervous, sleepy, and upbeat, each doing his/her best to put on a brave face for the others.

Fast forward 24 hours. I was in the operating room for just over 14 hours, and awoke in the neuro ICU unit. My mother was at my bed side, just as she would be for countless days following the surgeries to come in the years ahead. After helping me take inventory -- this was the first of many times I would ask if my toes were moving and break into joyful tears when I learned that they were -- the tone in the room, and the look in my mother’s eyes, switched in a heartbeat from relief to apprehension and sorrow as she prepared for one of the most difficult and disturbing conversations any parent can have with their child.

Over the next hour, my mom broke the news to me that my surgeons had been wrong -- the mass they saw on the myelogram wasn’t just a cyst, it was a tumor called an astrocytoma. The doctors believe it could have been present from birth, growing slowly enough and remaining small enough to avoid causing any problems with or damage to the spinal cord until the tumor bled from the top. This bleed formed a cyst, which is what caused the stiff neck and vomiting/weight loss/vision problems -- as the bleeding subsided and the pressure from the blood-filled cyst eased, the symptoms it caused all but disappeared. A year after the upper cyst shrunk down, the lower portion of the tumor bled -- the cyst that developed caused me to lose the lose of my hands until it, too, stopped bleeding.

The news that it was malignant was saved until after the story of how this invader had ruled the last two years of my life was complete. Only then did my mother tell me that the tumor was cancerous, and that my doctors weren’t able to remove it all because it was so intertwined with the nerves of the cord.

And that was the moment that the earth stood still -- for the first time. I had to go through hearing the news that this cancer was living inside me two more times. And each time it was the same: the earth and time stood still, all sound vanished, there was nothing except me, the tumor, and the unknown.

Wednesday, January 02, 2008

The Obligatory ‘Goals for the New Year’ List

Happy new year, gentle readers! We celebrated it as we celebrate all holidays -- namely, we don’t. I actually slept most of the day and evening away, my body and brain’s attempt to make up for another bout of insomnia that kept me awake and on edge for the better part of the previous two days. The only traditional new year’s activity in which we took part was the midnight kiss -- the Hip Hubby came into our bedroom and gently woke me up with a kiss and a quiet, “Happy New Year.”

Then we listened to our fellow islanders indulge in the insanely dangerous custom of shooting their guns into the night sky. As Jeff Dunham’s friend Walter would say, “Dumbasses.” ~lol~

So without further ado, here are my goals for the year ahead.

  • I’m going to post more regularly to this blog. My goal is to average a modest ten entries each month. This should be an easy success by just resisting distractions and writing multiple entries when I’m feeling good so I have a supply of material on hand in the event I get sick and am unable to write for a while.

  • I will finally dedicate myself to finishing the book about my experiences that I promised my mother I’d write. Brain fog can no longer be a convenient excuse for letting this slide. I owe it to my mother, who did so very much for me.

  • I will perform as many acts of kindness (random or otherwise) as possible. For the last month and a half, I’ve been contributing to an online forum, and have been told by many of the people there that what I contribute makes a difference. It’s been an incredibly beneficial experience for me to be able to help others navigate the roads I’ve already walked down.

  • I will no longer permit the lack of a structured schedule serve as an excuse to do nothing.

    And there you have it. 2008 -- the year in which I will get off my butt and be of use.