I’m going to start this post off with a bit of a nerd insert. It’s part of the dialogue between Cptn. Kirk and his son in Star Trek II: The Wrath of Khan.
David: Lieutenant Saavik was right: You never have faced death.
Kirk: No, not like this. I haven’t faced death. I’ve cheated death. I’ve tricked my way out of death and — patted myself on the back for my ingenuity. I know nothing . . .
David: You knew enough to tell Saavik that how we face death is at least as important as how we face life.
Kirk: Just words.
David: But good words! That’s where ideas begin. Maybe you should listen to them. [hesitant] I was wrong about you . . . and I’m sorry.
I debated whether to post this on Tala’s Reflections – my first blog – or here… I think here is best because I am addressing mindset more than illness itself. I’ll Reblog it later so it’s available on both.
It’s interesting sometimes to observe the widely varied reactions that people have upon discovering that they were not dealt the hand in life they expected or wanted. I have talked before about not staying in the pit of despair, about not wallowing, and about making the decision to take your quality of life back. Everyone is familiar with that by now… but there is more. I have seen denial take on a lot of different forms over the years when it comes to receiving a stunning diagnosis, and not everyone handles it with the level of grace that would make them a lead example in the community. When you have been ill since childhood as I have been, there isn’t this massive MOMENT of mental transition to tackle, and getting a defined diagnosis is more relief than burden. Everyone else around you (friends, loved ones) has a cow about it, but you yourself have already known for a long time that something was wrong. That makes it simply a notation, not an exclamation point in your story.
You have the choice of whether or not to be a part of the rheumatic autoimmune community. A part of the community – in other words participating in events, interacting with other patients, being part of the support network, speaking out for awareness, being an advocate, and educating yourself and the public. You can choose to stand outside the door and not be involved. Most of us consider it important to step inside and embrace the realities for the benefit of strengthening all, and helping to build a better foundation for those sure to come along after ourselves. There is a responsibility that comes with certain life events, but you can still make a choice about what to do with it. I am fine with people choosing to go their own path, and simply not be involved at all. If they believe they can handle it alone, then more power too them. What I am not fine with is people that ride the fence. Have you ever had friends that come running to you only when they need comfort, advice, sympathy, or support because something has not gone as they expected? Once their crisis is over, they fall into near silence again. While I have always made myself available when people had questions or needed to talk and continue to do so, please do not think that I am unaware of these patterns. I do see it. Choosing to announce that you are part of a community at large when it is convenient benefits no one but yourself, and in the end you are also cheating yourself. You just can’t see it yet. Be all the way in or all the way out. Don’t run hot and cold and then think that you can be a part of something like it’s an ID badge you take off at the end of the day. That’s like reaping the rewards without putting in the work. If you’re going to display medals of the combat, you have to have been in the trenches too. It’s not just about you. A community works as a team.
This is not to say that people that go it alone are not fighting a very real battle. It’s not about that at all. This is about how you present yourself. Passive-aggressive is really unattractive and I see it a lot. You can be angry about the hand dealt to you. You can be angry at the losses, or perceived injustices in your life experience. You can pitch as many fits as you want to about how things are not working the way that you want them to, or that something changed after you thought you had it under control, and you can be as disenchanted as you wish, but I can tell you plainly that is a path that leads nowhere. It’s still your choice. It is an unfruitful one.
Living with a disease like Lupus is not predictable except in one way: You can be sure that it will continue to be present, and it will continue to throw things at you that you do not like. Until you can accept that fact, you are stuck. You may be looking at other people and thinking that they are not handling it, or handling it well, when in reality…. it could be you. There is a crucial balance to be achieved if you are planning to have a successfully managed life while coexisting with this illness. It isn’t reached by avoiding it. It isn’t accomplished by trying to separate yourself from it mentally (denial) just because you had a successful period after making changes in your habits. Lupus patients do not get genuine “remission” like a cancer patient (and even theirs is tenuous, as is illustrated by the need for continued monitoring after undergoing treatment). Clinical Quiescence can be achieved, and it is wonderful when it happens – been there, done that. It is not however a permanent condition. I have watched many people go through this and end up angry when they later had another flare. They see it as a moment of defeat, or failure, when it is really just a normal part of our existence and should be expected. It’s not predictable on a schedule, but it is our reality. When symptoms return, you simply analyze what may have triggered it, and you fix it and go on. Sometimes it is something that you did – too many indiscretions on credit, bad personal choices. Sometimes it is an unavoidable circumstance – weather changes, a virus, or a traumatic life event. Sometimes we never figure out what the source of the trigger is, and that too must be accepted. If you spend all of your time harboring resentment about having to be like everyone else in the community and having to deal with it, you will not only make no progress as an individual but you will alienate others from yourself. This brings us back to whether or not you consider yourself to be a part of the community. Here there is no place for generalizations. Again… the majority of us want to take on the responsibility and do work hard to kick ass every day as part of the team. The times that I have addressed those that choose to stay in the pit and not climb out, I am speaking to a smaller percentage of patients than what exists out there. I want to state very clearly that most of the people in the Lupus community, and really in the autoimmune community overall, are warriors and devoted to progress. There are far more inspiring stories than there are defeatist ones. If all you are seeing is the people that are not handling it well, and that’s where your focus is so much so that you have nothing but negative remarks… then it is your own focus that needs to be addressed. None of us are above having MOMENTS where everything is just too overwhelming. The choice you have to make when you hit that wall is whether to process it the right way, or simply turn it on others with harsh words. How you present yourself in this moment will be remembered. People are funny that way, ya know?
I have a little room to talk. The truth is I have been living with illness my entire life (about to be 48 soon), and this particular illness in force for over 15 years. Don’t be fooled by the fact that I’ve only had a paper diagnosis for 5 years. Diagnosis is acknowledgement by a medical practitioner and in the case of this type of illness, it often takes a long time to get one. I’m not new. Without question it is important to have a MUTUAL support network somewhere, and I’m not talking about offering the occasional, placating, “How are you doing?” to someone, when what you’re really doing is setting up an opening to talk about how you are doing.. or not doing. If you’re not checking in without a personal agenda, don’t check in at all. Approach people honestly, and if it’s really YOU that needs to talk then say so. Don’t try to dress it up with a pretty bow to be something that it’s not. Honesty is to me the highest quality anyone can possess. I don’t like to compromise in that area.
Realize that people are not all that ignorant and won’t miss much that is said. An expressed view of how you see the struggles of others will remain even if words are swept under the carpet. Life experience, individual personality, circumstances lived, and emotional capabilities vary greatly. Just because it’s not where you are at doesn’t mean that another person’s experience is not valid. If you have been presented with better opportunities in life than someone else, it is also an opportunity for gratitude. Bear that in mind.
“How we face death is at least as important as how we face life.”
How we face the reality of BEING catastrophically ill is at least as important as how we face the things we need to do for quality of life.
If you have time to lash out openly at others, then you have time for introspection. Ask yourself which one is productive and appropriate. Be a part of the community. Don’t be a part of the community. Make a choice. Anything less than a concise decision is a lie. You can choose to separate yourself but if you do that, own it. Everyone has the choice to pretend they are not sick too, but I guarantee that eventually you will get knocked on your butt and know otherwise. We all talk about getting back up after a fall, but not many mention the process. Is it graceful? Not always. Is it possible to maintain some dignity when it’s not graceful? Absolutely.