Thursday, April 28, 2011
A couple years ago I flew home from a Hawaii vacation and landed a new symptom: Bell's Palsy. As the plane touched down, the left side of my face was drooping, an ice pick seemed lodged in my left eye and temple, yet my facial skin and half my tongue were numb. I'd never had this symptom before. I was exhausted but couldn't sleep. I couldn't get up the following morning to take my kids to school. I was a sleep-deprived zombie. I was in a ton of pain. I was riddled with fear about my face. At noon, I forced myself out of bed to begin calling doctors. A month later, I would be diagnosed with late stage Lyme Disease.
One of my relatives also flew back from Hawaii that day, too. He was very ill due to chemotherapy treatments for Stage 4 cancer. He read books in a pool recliner during our entire vacation. We were impressed. The morning after we flew back, while I lay in bed with Bell's Palsy, he went to work running a large organization and worked a full day. Everyone was impressed. His family and employees all catered to him.
I called my best friend to tell her about my new facial symptoms. She told me I just need to "think happy thoughts." She severed our friendship that day. I've hardly talked to her since. My medical problems were too much for her.
Last year three family members chose chemotherapy and radiation treatments for cancer. I knew they would temporarily have the awful symptoms I've dealt with for twenty years: exhaustion, nausea, pain, digestive problems, and cognitive difficulties. Unlike my ongoing and unpredictable exacerbations, each of their treatments were acute and usually scheduled. Two of my dear relatives died.
Unlike Lyme, none of my relatives with cancer experienced a lack of empathy in addition to all the other trials they faced. Like others around them, I ran errands for them, attended chemo infusions, did research for them, and offered remedies that have worked for me. Unlike others around them, I did all this for them while I was feeling as crappy as they were.
I've been the patient in an IV room a few dozen times and only once did anyone come with me. (My brother, who was only in town for a day so he had no choice if he wanted to see me.) No one has done research for me. No one offered to do errands for me. No one has sent me a care package. Family members berate me for my "special needs;" others snicker behind my back about my special diet. I even found out that some moms at my kids school were telling others that I wasn't really sick, that my medical problems were designed to get attention. (Hello, anyone remember Mandy from Under Our Skin?)
"I should just shave my head," said one of my dear Lyme friends, regarding the difference between how people treat chemo and Lyme patients.
What she meant is that we are feeling just as bad as chemotherapy patients, yet there is a huge gap in support and empathy. Is it that people can't see how bad we feel on a day to day basis? Why aren't we lauded for keeping up with life while faking that we feel better than we do? We do this for others - to be social. (See my post on the Ginger Rogers Club.) Do our loved ones forget how hard it is for us to keep up with life, every day of our lives?
Is it that cancer is terminal, while most think Lyme is not a fatal illness? (Lyme patients do die of heart failure and suicide.) Is there is no perceived urgency to help us? Have we already worn people out with years of "hypochondriac-sounding" symptoms? Are people wary of being worn out with long-term favors that will never get returned?
Why is quality of life valued less than quantity of life?
Recently, I had major abdominal surgery. This was a scheduled event, self-contained, like a cancer patient's first chemo treatment. I was blown away by friends' empathy and willingness to help manage the many moving parts of my life and the lives of my children. I was frequently moved to tears over their kindness. I sent out a thank you email every couple days naming 15 friends who had stepped up. This proved that lack of empathy around my illness wasn't just me - that people care, but they operate best around scheduled, contained events. They operate best when they can literally see what's wrong.
After a certain point, I felt that people had already done too much. I stopped sending email updates about how I was doing for fear of more friends dropping me like my former BFF. I didn't want to ask for more favors, and the offers slowed down. Due to the Lyme flare-up post surgery, I needed help for much longer than anyone knew, but few were there for me. I was back to being a Lyme patient. I still needed help. Again I struggled alone, only more depressed than ever since I'd been doing so well before the surgery. I was about 20% of my pre-surgery self.
The only friends who really understood my extended recovery were my Lyme friends. Calls, cards, flowers, emails, and unexpected favors kept arriving, long after most of the non-Lyme crowd had forgotten about me. For them and the handful of friends who kept checking in on me, I am forever grateful that their kindness made me feel loved and like I still mattered. Lyme patients need a reason to get up and fake it for everyone else. They gave it to me, and you know what? It's their empathy that has given me the will and courage to keep getting out of bed.
Wednesday, April 27, 2011
There is something about Lyme that is particularly infuriating: It messes with your head and your heart. Just like Love. After 2 hours of sleep, I just woke up with not only trembling in my chest that is running at about 8 Hz (the same as my tremors elsewhere, such as feet and right arm), but with a high pulse (83). At first I thought vaguely, "Oh, you're ok. This is normal. True, you could barely eat dinner tonight, trying to coordinate your arms, and you had trouble standing upright in the shower at the gym without falling over, almost froze like a block of concrete staring at the bed tinight trying to remember how to get in it, or remember how to brush your teeth, but it's nothing. Roll over and go back to sleep. Ok. Now, how do I roll over, again?" For anyone with neuro Lyme or with Parkinson's, these experiences are common. This is everyday reality. The part that makes you feel insane is wondering a) whether it's normal, and b) if it will ever be different, will I ever feel 'right' again?
You have to remember, 'sleep' for me already means something different than it does for the average Joe. First, I put in a sleep-apnea oral appliance that looks like a double retainer, sort of like what you get after the orthodontist takes off your braces, only one for the top teeth and one for the bottom, tied together with a steel pin. The object of this device is to push the jaw (technically called the 'mandible') out, in order to prevent the tongue from falling back into the air passage and stopping me from breathing. Then, to prevent me from breathing through my mouth (I'm what they call a 'mouth breather'), I have to tape my lips together with something. I use 3M Micropore tape because it's for medical purposes and hurts only a little to remove in the morning. Then I put in foam earplugs, because I sleep so lightly that even raindrops on the window will awaken me (as they just did). Then an eye shade because ditto, for light. After all that and 6mg of Melatonin, I hit the hay. And then I pray I'll be able to sleep.
An important factor of successful or even semi-successful sleep is that I start in a good position. I know what you're thinking. Your thinking "Oh, come on Bob, this is true for everybody, including me." But what you don't know is, I have to pick a perfect position because I'm not going to move during the night. Not because I don't want to, but just because I don't. I don't know why, but this is true for people with Parkinson's disease, too. They just don't know how to move while sleeping, apparently. So I will wake up in the same position I went to sleep in. If I'm a little bit off, such as my back is out of alignment, I will have a sore back the next day. Or if the pillow is under my head in the wrong way, it's going to be that way the whole night. I might have a sore neck the next day.
It's also true that for me, and for a typical Parkinson's patients, we don't know how to turn over even when we are awake. Or semi awake. It's almost impossible for me to turn over in bed or to change my position. It's a combination of lack of strength and lack of coordination. It's a little bit like trying to find a word that you can't quite remember. I used to know how to turn over in bed. I used to know how to hold my fork and eat a piece of steak, and how to cut it. But now I can't seem to remember how to do either.
And no, according to brain scans (I've had four), I have not had a stroke. I do have a half dozen small holes in my brain but they are no bigger than the average holes in anyone's brain. So what used to be simple pleasures like this become sort of brainteasers like playing sudoku for doing a crossword puzzle, only infuriating, non-optional, and low on my entertainment scale. I have to remember mechanically, or I have to figure it out on the fly: "Now let's see, how would I get that steak into my mouth if I were human being who had to pick up this fork and hold it and stab the steak and then aim it towards my mouth?" It ends up looking a little awkward, at best. And, it feels totally weird.
This is what Lyme patients have to go through with almost everything they do, and it's called having "brain fog". On a good day, you sense it as just being sort of weird. You feel like molasses in January. You're stuck, you freeze, you forget what you are doing, you even can't remember how to move to pick up your pen. You can't tie your shoe. On a bad day, it's infuriating and you feel rage. "Why me?", you ask. How long will it be this way? Or you just feel rage, with no question at all. It's just anger. It's called "Lyme rage." There is speculation in the medical community that Lyme rage is associated with certain co-infections of Lyme disease such as Babesia or Bartonella. It's probably true. When I was sickest, about nine years ago, I had so much lime rage , It was unbelievable. I had no idea about Lyme rage or what it was. All I know is that I went from being a normal person to wanting to strangle even my best friends. But it's not as bad as it was then.
But I'm straying from my point. My point was about the ritual I have to go through to go to sleep at night. So you can imagine what it looks like, my head has earplugs, taped lips, eye mask and I get into bed, lie flat on my back and straighten myself out totally so that I'm as ergonomically correct as possible. Then I turn off the lights -- if I can reach the lamp, which often I cannot.
You're probably wondering or asking yourself "Well, you can type this in the middle of the night, can't you?" Actually, I'm sitting here like a shaking rock, talking into my iPad. The iPad is typing what I say through the magic of the Dragon Dictation application that is running on it. All I can do is tap the screen and talk. My right arm is banging against my body at that telltale 8 cps speed and is rigid. I'm sitting crosslegged on my bed at 4:14 in the morning, talking into a computer, trying to let the world know that other people are not alone if they're having in an experience like this. This is the best thing I can think of to do right now. Other people in the neighborhood are blissfully asleep in their houses, I presume. Maybe they are dreaming. Maybe they are dreaming happy dreams. Personally, I can't remember the last time I had a happy dream. A couple of nights ago I had a dream where, like Persephone, I was trapped underground under the crusty surface shell of the Gaia, agitatedly wandering about, not being able to get out. Mostly though, I don't remember my dreams. Maybe that's a good thing.
Getting back to the fact that I woke up at an expected time, I was aware that I was in a vague state of confusion about what I should do. After a minute or so, I realized I should take my pulse because I was feeling a very intense feeling in my heart. Trembling. Sure enough, even though what I was feeling in my chest was the telltale 8 cps shaking, my pulse was actually high. You see, except for one nurse who heard the trembling in my heart once in her stethoscope, no EKG tests have been able to detect it. It's just something that I feel. People can see the tremor in my hand or in my feet, but they cannot seem to detect it in my heart. I was surprised when the nurse heard something and said "Hey, what's this trembling sound I hear in my stethoscope?" I said "Denise, even the EKG could not detect that. They did not believe me when I told them that I feel it all the time."
In any case, I decided I should turn on the light, get up, go upstairs, get my blood pressure meter, and my thermometer and take my vitals.
What did I find? The usual. Another reason to wonder if I'm crazy or not. Blood pressure: 103/72. Pulse: 83. Pretty normal. Well, 83 is fast for sleeping. It's not out of line if you're having a dream. But, lying quietly should not be 83. My resting pulse used to be 65 or so. Sometimes even slower. But now it is quite quick. Almost all the time. Between 72 and 90. And I can't do something that most people can do which is called "make yourself comfortable." I used to be very comfortable almost all of the time. And why not? After 35 years of practicing meditation and other relaxation techniques, I certainly knew how to "make myself comfortable." But now, no position is comfortable. How can you be comfortable when your muscles jam up like a rock and your toes are shaking and cramping and your stomach is tight and your heart is pounding? And your hand turns into a claw when you're trying to eat an enchilada. Or just hold a regular expression on your face while talking to someone who doesn't know that internally you're shaking like you're afraid you're about to die or that you might actually die any minute or at you might fall apart right there in the Nation's hamburger store on main street in Alameda, while you're eating a piece of Apple pie and talking about religion with a friend. And that's the same feeling I had when I woke up an hour and a half ago, before I started writing this. Am I going to die now?
They say that the cause of posttraumatic stress disorder is going through a traumatic experience like an explosion in a war zone. Somethin dramatic. But another definition of it is low-grade continual, repeated stress. Like being an incest survivor, or a Holocaust survivor or even surviving the oppression of a stressful workplace. I had a client when I was a psychotherapist who had a job as a TSA operator employee whom I believe is suffering from posttraumatic stress disorder as a result of job pressures. She suffered on the job, constantly worrying whether someone who just walked by her was carrying a bomb. Or might be. She wasn't allowed to go to the bathroom for fear that someone might walk by who was the next terrorist and blow up a plane, and she'd be responsible. Well, it's about like that. Waking up every morning wondering if I am going to be much worse today, how the disease is progressing, how much brain damage is permanent, how much is temporary? Questions like that are everyday realities for people with a chronic disease. I'm not claiming to be unique. But having two diseases with unknown causes and unknown cures, and especially having one that the medical system claims almost doesn't even exist and the insurance system won't pay for is pretty crazy making.
And then there are the financial worries. I have already spent the better part of my retirement money trying to figure out a cure for this disease that continues to worsen and erode my sense of self confidence. I have spent nine years being out of work, seeing doctors, making the best out of life while being sick, trying to reinvent myself, going back to school and getting a masters degree in psychology, thinking it's all psychological (which it is not), and trying to be a trooper. I have pretty much given up being in a relationship because that is just about impossible with a disease like this. Well, at least for a single person. I envy the people with Lyme disease who have a mate to help them through this. Ditto that for Parkinson's. There's nothing like going on a first date for "dinner and a movie". where you can can't eat, and you can barely sit still in the movie theater.
Unless you're going shopping for an partner in a chronic disease support group, it's kind of awkward starting your first date saying, "Oh, me? Well I have this weird disease called Lyme disease that can look like between 200 and 300 different kinds of diseases", or "I have Parkinson's disease which is a degenerative neurological disorder that is sometimes fatal but always degenerative and there is no known cure. Oh, and if it is Lyme disease, there is speculation that it is sexually transmissible, kind of like Syphillus." It's not exactly a conversation starter. But if you have a party with too many people in your house and you'd like to empty the room it's a pretty good tactic.
Well, sorry, I didn't mean to make this entry sound like a pity party. But I guess I am feeling pretty miserable tonight. I just took a Valium, so I might get some sleep after all. In the meantime, I promise to make the tone of the next entry more upbeat. There have been some bright spots in all this, and I have been thinking about those more lately. I'll try to elaborate when I'm feeling a little bit more positive.
Your Lyme disease correspondent from the field,
Robert (Bob) Cowart is one of the best-known writers of books about computing, having authored over 45 titles, with over a million copies sold worldwide in over 15 languages. He is also a psychotherapist intern graduate of the California Institute of Integral Studies (CIIS) in San Francisco. Robert has had Lyme disease for an estimated 40 years, and was diagnosed in 2006. He was diagnosed with Parkinson's disease in 2009. He has been unable to write since 2002 when he fell sick for the third time in his life. He is (was) also a pianist, bassist, and concert promoter and impresario. He founded and hosted Hillside Concerts, a classical, jazz, and world music concert series in Berkeley running for the last 19 years. All of these activities have had to be suspended due to symptoms of neurological Lyme Disease. He is currently applying for Social Security Disability Insurance.
Please visit his blog at http://bobcowart.blogspot.com
He can be reached through email at email@example.com
Tuesday, April 26, 2011
If you give a Lymie some laundry,
chances are when she goes downstairs,
she'll see a large bin with unused shoes which will remind her that
the elementary school is having a shoe drive for Souls4Soles.
As she looks through the bin, she'll see dress shoes,
but will forget if the drive is only for tennis shoes
so she will head upstairs to look for the memo,
forgetting to add a load of laundry.
She will see her phone,
which will remind her of a friend she wanted to call.
As she sifts through a kitchen drawer looking for an old phone directory
from when she was well enough to teach,
she'll find postage stamps of varying amounts, unsent greeting cards, paper clips, garden seeds, DVDs, business cards, menus, screwdrivers and other miscellaneous misfits.
She will decide to clean the drawer.
When she gets to the bottom of the drawer, she still hasn't found the number she was looking for
and her counter and table tops are now a mess.
Realizing it is lunchtime,
she begins to poach an egg.
Her daughter will ask for one.
When she is unsuccessful in her search for the baking dish,
her daughter will gently remind her to check the microwave,
where she will find the egg she made for yourself, but forgot to eat.
When she sits down to eat the egg, she will see the computer
which will remind her that she still would like to call her friend.
She will Google her friend's name and find her on Facebook.
but will be distracted by everyone's status updates.
Eventually she will remember to send a friend request.
Fortunately, her friend "friends" her and sends a phone number.
She calls and a they plan a time to meet.
Thinking this might be a fun blog entry, she sits to type at the table, among the piles of greeting cards, postage stamps and other miscellaneous misfits, and thinks to herself,
Tuesday at 10am. Now, if only she can remember to meet her friend on Tuesday
and what will she wear?
Monday, April 11, 2011
By Ozone Amanda, Spirochicks Contributor
Jessica Ingersoll-Cope always kept her illness “closeted”, known only to her close friends and family. As a professional dancer, who had to stop working when an undiagnosed lyme infection disabled her, she felt confused, upset, and lost when her body stopped keeping up with her. Since so much of her life had been defined by “doing” and movement, her mysterious illness caused her to suffer a crisis of identity. (Most lyme sufferers will probably find this relatable.)
Jessica's new, fourteen-minute film, Forms of Identification, began as a conversation with a filmmaker best friend, and as a way for her to hold onto her dancer and performer self. But, as the three-year production process stretched along, the film became more about conveying the universality of loss and emphasizing the connection of her personal journey to a larger, communal struggle.
“There are so many definitions of loss,” Jessica says, “whether it be due to death, divorce, retirement, illness…At some point, everyone will experience profound loss.” In Forms of Identification, she uses her body to convey lethargy, exhaustion, and the disjointed feeling of self that loss leaves in its void. Jessica’s dancing is overlain with medical lyme definitions, footage of her pre-sickness art, and somewhat-eerie treatment scenes.
While the theme of the video is relatable to a broad spectrum of society, Forms of Identification is also a highly personal story. Jessica was originally very reticent about sharing details of her personal life with such a public audience. Having “closeted” her illness for years, she not only didn’t want to share personal details, she wasn’t sure she wanted the film to specify illness as the cause of her despair. But, for the viewer, the film’s poignancy of feeling and the power of Jessica’s filmed movement stem from this personalization.
Kristin Tieche, her co-producer and filmmaker friend, eventually convinced her to share personal details, as well as her dancing. The result has been surprising and moving for Jessica. As the two began screening the film, audience members and fellow lyme sufferers began to tell Jessica what her dancing and film had meant to them and their own stories. Jessica says these connections made her realize that this experience and film was not just about her—that they were part of something larger.
Kristin and Jessica have entered Forms of Identification into a number of festivals—including Dance Camera West (LA), Marbella International Film Fest (Spain), and Chicago Reel Shorts—and have plans to submit to many more. But, for Jessica, the journey has mostly been about learning. Working with Kristin, she learned a great deal about filmmaking. Now, she says she has also gained from a sense of solidarity that the act of sharing her story with others has fostered—“It has been a very healing experience,” she adds. Jessica may still have a long way to go, but she is glad to know she has company.
To learn more about Jessica and the film, check out the Forms of Identification blogpage at: http://www.formsofidentification.blogspot.com/ Healing thoughts to all!
Thursday, April 7, 2011
Multiple Chemical Sensitivity (MCS) is characterized by the development of multiple symptoms in multiple organ systems upon exposure to chemicals at or below previously tolerated levels. (1)
Wednesday, April 6, 2011
Lyme Disease Awareness T-shirt
Lyme Disease Awareness Month is right
around the corner!
around the corner!
Show solidarity, and draw attention to the serious issues
that Lyme patients deal with every single day.
PO Box 7110
Richmond VA 23221