First a bit of background… A dear friend is battling MS. I have known Patti for over seven years, and this disease has taken much, from her, from her family, and the speed in which it has progressed from diagnosis to now have astounding, and not in a good way. Treatments were not having the desired effect. After much research and into options here and abroad, and much soul searching, Patti made a decision to go to Russia to have stem cell therapy. She was over there for weeks, and had her stem cells harvested, processed, and infused back. (Here is the link on the process from Patti’s blog http://standingstrongagainstms.wordpress.com/hsct/) Exceptionally close to her family, she spent her birthday and Mother’s Day in Russia. She had chemo that took her to the brink, and she was in isolation. For more on this, see her blog, Standing Strong, here. http://standingstrongagainstms.wordpress.com/
She began her blog as she prepared to go, and this was a stretch. Patti is a very private person, and plays it close to the vest, so to speak. She does not complain and keeps many key things to herself, often foregoing support and comfort not to martyr herself, but simply because she does not want to inconvenience anyone. She is always the person to rush to care take for others, and MS has impacted that greatly.
Her blogs shared the irreverent, the humor, the anxiety, and the coping of dealing with serious illness and potentially life changing procedures half the globe away with language, culture, and food being significantly different. Upon her return she posted a blog that she prefaced with a statement I did not understand … a statement that indicated she expected to be pilloried because she was going to express the less than positive side of what she experienced. She also expressed the gratitude for the doctor, and stated she would make the same choice if she had it to do over again. She spoke of the struggles to communicate, and very succinctly outlined someone who is isolated in a group of people, and for whom small things become large things, as many do when they are feeling vulnerable.
The backlash was immediate, and ugly. She was attacked, called names, and many things were intimated or outright stated in pages and pages of comments. I was simply gob-smacked at the vitriol and animosity directed at Patti for daring to complain about anything. The responses she received were attempts to silence her, to invalidate her observations and expressions of said, and used the tactics common to relational aggression and online bullying. Some of these comments intimated or came out and said the following:
- She was a whiner or ‘whinging’
- She had a perverse sense of entitlement
- She was being an ‘ugly American’ or engaging in exceptionalism
- She is high maintenance
- She was ungrateful to the doctor and to the nurses
- That she did not make a good faith effort to communicate
There were many more, but you get the idea. Some posting have already been through the treatment, and some are waiting. I was shocked at the level of negativity, and the multiple comments from individual posters. The behavior was mean, bullying, and very like sharks circling in the water after it has been chummed.
Now, when you choose to blog, and especially about issues so intimate and serious, there is always going to be the chance of those folks taking issue with what you have to say. That is the risk you run, and that is their right to express their dissent. However, freedom of speech does not give you freedom from consequences of your statements, and those may have very real impact. That being said, it also amazes me that the ability to disagree and conduct a conversation based on courteous discourse has apparently disappeared, and polarization, attacking the person rather than discussing the thought, and trolling continues to be the fallback mode for many.
What I saw in Patti’s blog was a strong, self-sufficient, professional woman who has not had a lot of international travel experience at this point – or exposure to cultures with radically different perspectives than she has experienced in the US – on confidentiality, privacy, healthcare, clinical cleanliness, necessity verses preference, patient centered/focused care, accommodation of those with mobile challenges, who really experienced those differences in a space where she was most vulnerable. Reading about them is one thing, experiencing them, especially when one’s resilience is already stretched to an Olympic level of thinness is quite another. She expressed her perceptions of those things, from her perspective and filtered through her experiences to that point. She was totally dependent and at times, helpless, in a process that was foreign to her. She was also concerned about advocating for herself or others too strenuously since her sister was there as well, and that had to be incredibly dissonant for her.
Having been seriously ill and hospitalized recently, I am very aware of the immense power disparity that sometimes patients feel. I had the experience in my own culture, and have a significant history or working as an allied partner in the healthcare field, and one day I laid without meds, without my catheter being changed, and with no help coming. And I just counted down the hours until the next shift, and dealt with it later. But I digress. With any program, any workplace, there are people who excel at what they do, and those who simply do not, and those who fall on any place of that spectrum. Nurses are human too, and have bad days, bad weeks, things outside the job that impact their performance, patients they do not like/do not connect with, have their own bias and prejudices, and sometimes, are a bad fit to a specific position. Like patients and commenters on blogs, no individual is single natured.
As I pen this blog, Patti has only been home just a few days. She is still weak, and will not be able to resume many critical things, like physical therapy, until a month or so passes. Stress is one thing that will impact her positively or negatively, and my feelings are as follows.
What Patti wrote may be hard to read for some, but they are her experiences and her thoughts. She and she alone has those unique experiences and the context for those experiences. She has a right to them, and a right to express them. Those reading have the right to agree, to disagree, to stop reading her blog, to un-follow the RSS feed, whatever moves him or her. Was this different than your experience? By all means share that. Are there lessons to be learned for Patti, for Dr. F and his team, for those who have, or will, experience HSCT? Absolutely. But attacking, vilifying, and otherwise bullying someone because they see things differently than you or do not seem to be appropriately grateful in your opinion? It is just that. YOUR OPINION. And that can be expressed in a far more civil and mature manner.
I wish Patti and her sister Diane the speediest and most full of recoveries, and I have the same wish for all who have had, are experiencing, will have, or need treatment for MS. I also wish that folks demonstrate the compassion that they would like to experience if they were ill and putting themselves ‘out there’. Something a friend who has battled not one, but two, life threatening illnesses stated to me came back to me as I wrote this. He spoke of the ugliness and behavior of this sort in the HIV/AIDS world, and his statement in support of our very ill friend who was attacked on a panel for speaking honestly about his HIV treatment experience to other HIV infected patients was, “There is no ennoblement of having serious disease. If you were an a**hole before you were sick, you most likely are an even bigger one now.” I only mention this as one of my mantras in dealing with those who seem to derive a secondary gain out of harming others is, “hurt people, hurt people…” Another quote, that like the title of this blog, are not mine. I will end with a paraphrase of the title quote… “It is okay to be angry, it is never okay to be cruel.”