My biological family is not more dysfunctional than others. I lucked out there. But, and this is a big caveat, it is not at all equipped to deal with a neuro-immune disease that has put an end to my always functioning perfectly and according to expectations and to being successful. No longer can my parents proudly point to their only daughter—who made it out of dreadful East Germany after the wall came down and lived the American dream for a while working for a big law firm—to prove that their lives were a success. The law firm job is what got me this sick in the first place, but that’s just a minor detail that one shouldn’t get hung up on and in any event, let’s not digress. How embarrassing it must be to have a daughter with a disease that the government says doesn’t exist or is not serious or is all in patients’ head. Imagine what others might be concluding this says about my folks’ parenting skills! The shame! The only conceivable way to control the damage here is complete denial at all cost.
I have often said that the way others treat those who have this devastating illness can be worse than the illness itself. Those who know how horrific the symptoms of this disease are will understand how much emotional pain I am talking about. Besides making insensitive comments or badmouthing, invalidating and ridiculing us, there are the blank stares. Every patient who has ever tried to explain this illness to somebody else knows the blank stares.
Blank stares are the worst. Those are the looks that say,
“I have no idea what you are talking about. I don’t believe you. And I will not spend any energy on trying to understand you because, quite frankly, what you are telling me sounds like bunch of BS. So, forgive me when I won’t even pretend that I am interested in what you are saying. And in order not to encourage any more talk about this disease that makes you tired, I will not ask any questions that could help to clarify things for me.”
There are different flavors of blank stares. Some, instead of disbelief, are saying,
“This is so uncomfortable for me to talk about. I don’t want what you are saying to be true because if it is, then I could be next. And if it is, then I have to live with the knowledge that you are in a lot of constant pain. And maybe most importantly, if what you are saying is true, then that means that the government is sacrificing hundreds of thousands of people and their families. I can’t tolerate those thoughts, so I rather shine it on. And if that means that I increase your suffering, then so be it.”
No matter what the dynamic in a particular case, all blank stares have one thing in common. They scream indifference. Blank stares are what make me question humanity. They are much worse than the insensitive, “You look fine to me” or the down-putting, “I wish I could lie on the couch all day” or the behind-the-back, “How bad can it be? What makes her think that she is more tired than the rest of us?” Blank stares are worse because they give us no way to counter the skewed thoughts and prejudices. They are the worst because they tell us, without saying a single word, that we are not worth engaging with about a fact of our life that is so devastating that a fair number of patients cannot hang on any longer and decide that death is less painful that this “life.” Blank stares are the worst form of being invalidated.
Instead of trying to understand, the blank-stare people will proceed to complain about how a recent cold has really messed with their enjoyment of a long weekend. Of course, there is a hierarchy of the amount of pain caused by blank stares based on who delivers them.
Our daughter, Aimee, turned 2 years old last weekend. A day before the big event, my mom, whose been visiting from Germany for 3 months, asked me what we would do on Aimee’s birthday. I am quite aware that it is expected these days to put on elaborate parties for infants or toddlers with a bunch of other infants and toddlers, even though none of them, not even the birthday child, know what it’s all about at that age. These parties are mostly for the parents and their friends and family and I’ve had a good time at the couple I have attended. I would most definitely enjoy having a party for Aimee’s birthdays. But we just moved to Incline Village a few weeks ago in order for me to start Ampligen treatment with Dr. Peterson and we don’t know a soul here. The truth is, though, that even if we were still at home, we wouldn’t have thrown a party or made any other plans that involve leaving the house for reasons that should be completely obvious to anybody who has spent a little bit of time with me lately. I am sicker than I have ever been because the move to Incline caused a very serious crash for me. I spend more than half of my time in bed. I am able to take only 2 or 3 showers a week. Sometimes, I can’t talk above a whisper. I am in constant significant pain. Just giving you a glimpse into what’s going on and certainly not the whole picture. So, I was quite perplexed by my mom’s question and answered, “Well, no special plans. I will try to get out of bed and I hope I can play with Aimee a little bit.” Blank stare. No reply.
On the morning of Aimee’s birthday, I was lying on the living room couch in obvious agony while Aimee was excited about her new trampoline. My mom asked me, “Where did you put my present for Aimee?” She had left buying a present for her granddaughter up to me for reasons that are not entirely clear to me. I told her the present was still in the same place that she and I put when it arrived via UPS, but that we would not be giving it to Aimee right then. My mom had seemingly no idea why we postponed the gift-giving part of the day (except the trampoline) to after Aimee’s nap in hopes that I would be feeling a bit better then and could take it all in more and maybe even take some pictures. I didn’t bother to try and explain it. I couldn’t handle another blank stare.
I have received a countless number of blank stares from my mom over the years, e.g., when I told her that reputable and credible physicians opine that ME is as bad or worse than late-stage AIDS or cancer and call it “another form of death,” that patients die an average of 2 decades earlier than they would if they didn’t have ME, that a significant number of patients are in so much agony that they end their own lives.
I guess Germans have never been accused of being overly loving or supportive. And this probably has a lot to do with why I am not in Germany anymore. But even for a German mother it takes a lot to completely ignore the fact that her daughter is going through the absolute worst time of her life. If my own mother cannot muster more than blank stares, how can I expect anybody else to? I can’t and, for the most part, I don’t anymore.