My daughter and I went to see the movie “The Curious Case of Benjamin Button” today and the timing couldn’t have been better. Without giving too much away, in case you haven’t seen it yet, the premise of the movie is that time gives us what we have and we can choose what we do with it. It is full of the usual important lessons like how we never know what’s in store for us and that we need to learn to let go so we can appreciate more. It’s a long, but touching story adapted from F.Scott Fitgerald’s short story (I liked the movie version better – and not because of Pitt…although that did help.)
#3 Personal Secret: I go to lupus presentations convinced that I know everything already.
I have spoken with rheumatologists, other presenters and support group participants who have actually complained that their audience or co-participants make it difficult to want to talk with anyone attending. There seems to be a pattern among these attendees, of which I am one, where they are more interested in making the experience to be talking about their conditions and showing how much they know rather than learning anything new. This has caused many requested speakers to refuse to present at local public presentations, and this is a problem for all of us here in the PNW.
I recognize the frustration that many of us have about no new medication and treatment options for handling our lupus in over 50 years.
I also understand the desire to learn as much as I can about my options, which our doctors are aware that what they offer is limited. Yet I admit that I can’t let go of the need to feel like I already know what is going on. When I sit in the audience at any presentation that is designed to enlighten me about health issues by well-intentioned presenters (hopefully), I seem to close off absorbing what they have to say and, instead, look for flaws or points to argue.
Again, this brings me back to the other secrets where I address my need to control. To openly admit that there might be something I don’t already know would be admitting to being vulnerable – and that is unacceptable to me. I’ve had lupus for over a decade and, unless there is a new pill that will cure it, I’ve tried everything. Or have I? Does my scoffing at the information from the presenters give me a strange sense of power over lupus itself?
At the last health presentation I went to, the speaker lured people in (primarily women) by keeping the hook very general – what is health ? During the presentation, I sat there initially interested in what the speaker had to say, but then noticed a strong feeling of concern. Red flags were going up all over with every question from the audience and I wasn’t sure why until after the whole thing was over. As the usual group of people with individual situations to share flanked the speaker, it hit me:
Not once was there any mention from this ‘professional’ that any changes to a person’s diet, activity levels and additional supplements should be mentioned to their current medical provider before starting. This is the golden rule for anyone managing their health and I knew he was being dangerously neglectful.
Even though this was a general health presentation, I have learned to question authority because my illness – my disease – my life has relied on my belief that personal experience is worth more to me than anything someone else can tell me. Yet, I find that I’m not clear on where my experience has gotten me after all these years and, sometimes, feel like I still don’t know what it all means. Going to this presentation did teach me some things and I met some nice people while I was there . I had to translate for one gal to help her understand what he was talkng about and finally ended up telling her to talk with her doctor (I was worried she might do herself some harm).
Like the character Benjamin in the movie, I don’t know what it means to live with lupus because I’m “always looking through my own eyes“. Rather than spending time at a symposiums, listening to presentations or reading other blogs looking for all that I already know – I need to quiet my fearful pride and listen, because there is a good chance that there just might be something I can learn. If I don’t learn more, then at least I’m reinforcing what I do know.
#2 Personal Secret: I bounce between lupus as a disease and lupus as an illness, never truly comfortable with either.
There are days when I prefer to see my life with a disease because then I feel it gives me a target to ‘manage’ on my own. Then, there are other days when seeing myself with an illness feels much better to me because ‘illness happens to everyone’ giving me a club to belong to and not feel alone. Will knowing how I am going to define lupus really help me in defining my life?
It’s apparent to me, and I see it in others, that lupus offers me either a challenge to grow beyond or a wall to hide behind. We are hearing more about individuals – women – deciding to put off medical care due to financial concerns or constraints. I have always done that to some extent over the years, but I confess that I spent the entire 2008 avoiding care for financial and emotional reasons.
I can see that my situation as an illness defines only a part of me and that I have a disease that will not limit all of me. It’s all the same, any way you spell it – so I’m letting it go. What I can’t keep doing is jeopardize how far I’ve come by neglecting any more of my medical care.
Over ten years ago, I was hospitalized and waiting to start dialysis when my doctor came in and asked me what I had done? My blood work changed within a day and I told him that I “just let things go“. He said “Well, I guess it’s working, because if you have another day like this, you’ll go home tomorrow.” I did go home and haven’t looked back since - with my kidneys still functioning at 100%. Did I reverse my clock so that they are getting younger and stronger, just as Benjamin did, by letting go and living without trying to define things? I don’t know for sure, but I think so – at least until last year. I saw that clock’s direction change again and my flares are getting stronger than ever. I have more stress and feel more fear or uncertainty than I remember feeling in a long time.
Will I ever know all there is to know? Of course not, so I need to remain willing to learn. Will I ever know what my life with lupus (as a disease or an illness) is going to mean? No, and it doesn’t really matter -because I’m not done living it yet.
