h1

Don’t Be Afraid

September 23, 2009

When I was a little girl, the only chef on TV was Julia Child.  I think she influenced me much more than I previously realized.   I have always cooked totally without fear. I am the only person I know who will prepare something I’ve never made before when I’m having guests for dinner.  In fact, that’s my favorite thing to do.  I recently saw the new movie, “Julie & Julia,” and when it showed the famous Julia Child TV moment when she trills in that voice that Meryl Streep did so perfectly, “Don’t be afraid!” I suddenly remembered seeing that show all those years ago when Julia said that.  I had long since forgotten it, and in that moment the memory brought back the way Julia made me feel when I heard her say that…I felt a bravado, like I could do anything and there was no reason to be afraid, not of food, not of anything. 

Here it is, umpteen years later and that feeling is just part of me now.  I certainly cook that way, but until that revelation in the movie theatre, I hadn’t noticed that I really approach everything that way.  I’m not a big risk-taker or anything; Mom overruled Julia’s influence in that regard…but “Don’t Be Afraid” is my general attitude toward things I want to do, and things I have to do, too.  It’s certainly the way I have always tackled emergencies and crises and it is the way I deal with MS.  

But let’s be honest here, fear and denial are hard to resist when facing disease and the radical life changes that can come with it.   I don’t want to lecture here, but I do want to share my story with regard to fear and denial, with the hope that it may help others avoid some of the pitfalls.

First, understand that MS is not considered a fatal disease and most people who have it live a normal life span.  The unpredictability of the course of the disease is certainly scary and particularly so because no two cases are alike. No one can ever really be sure how his or her case will progress.  But according to all sources I have read, by far the majority of cases are manageable and with appropriate adaptation, life will be good and long for most MS patients. 

On a personal level though, it’s not always as easy as it sounds.  The fact is that for me there was, and probably for most people with MS or any other serious diagnosis, a period of mourning to go through. The usual stages of mourning a death – denial, anger, bargaining, depression, and acceptance – are not so different from the mourning of the loss of the life you expected to have.  The medical community might expect us to have a long life, but that doesn’t mean that we (or even most of us) will be able to live and work the way we would have without MS. It is hard to accept this sudden change in our lives, and fear and denial are very common upon receiving the surprise of an MS diagnosis.

For me, when I had my first episode and long before I was ultimately diagnosed, I had already pretty much figured out that I had MS so it didn’t come as a big surprise.   I didn’t have time to stop and be scared and I didn’t have time to waste on denial; I had two small children and I had to figure out what to do on a practical level right away.   Back then, an MS diagnosis was made after doctors watched your symptoms for a year to distinguish them from other diseases.  Not really so very scientific, this diagnosis by elimination, and it would certainly be easy to think that a doctor could misdiagnose on that basis.  That wait was frustrating for me, and at times I wondered whether it was MS or something else, but there really wasn’t time to dwell on that.  Now the diagnostic tools are better, and MRIs are particularly useful in diagnosing MS.  MRI technology was very new back in the early ‘80s when I had my first MRI because of chronic headaches.  I remember at the time that the radiologist and neurologist noted that there were spots on my brain but actually admitted that they didn’t know what they were or what they meant. My doctor now, looking back at those first early MRIs has no doubt about what those spots were then …they and we know so much more now and diagnosis based on MRIs is pretty reliable.  I’m glad they didn’t know what the spots were on that first MRI because I didn’t have my first episode for some years after that and knowing that MS was coming would have changed things needlessly, and not for the better.  I might have chosen not to have another child and that’s something I hate to even think might have happened.    

For many people, and I would venture to say most people, there is that period of time when you want to deny that you could have MS.  You’ll deny it for as long as possible, until all testing has been done and the doctor has made the definitive diagnosis and even then, many of us try to believe that there’s been a mistake or that something else will be revealed to change the doctor’s mind.  For me, a hint of denial came much later when I had been in remission for so long that some doctors started wondering if that diagnosis had been correct.  It was their questioning that led me to wonder and to hope that maybe it was something else.  Then, a few years ago when it shifted into Secondary Progressive MS, there were no more questions.  Denial is natural in situations where diagnosis is bad, unexpected, scary and filled with the unknown.  I don’t for a minute believe that a person shouldn’t experience it, I think it’s to be expected and to some degree it is the denial reaction that drives a patient to find out all he or she can, to seek multiple opinions and to look for all options possible in his or her situation.  That is a very good thing as long as it doesn’t drive you to hide your head in the sand and refuse to think about it at all.  I haven’t seen that happen very often with MS though, where something very obvious is happening to your body. 

Fear, though, is another thing entirely…there is a big difference between a bit of denial and the all-out fear reaction.

Having been in both places, I can tell you what I’ve learned.    Fear might be as natural as denial, but fear does a different thing to a person.  It drives people to do irrational things, to be tempted to make choices that in a more stable state of mind, they would never make.  It makes people desperate.  Often, desperation takes the form of trying crazy, dangerous or unproven measures to treat or cure disease. The presence of unbridled fear can allow a patient to accept a treatment prescription that in fact may not be best for him or her for a variety of reasons.   Other times it hinders the creation of a healthy partnership relationship with doctors who are there to help, causing a patient to rely on doctors or even family members to make all the healthcare decisions for him or her without giving input as to personal observations or informed concerns.  Fear tends to inhibit lively dialogue with healthcare professionals that would enable doctors to understand better what would be appropriate for you.  When you manage to keep a level head about it all, searching out information and thinking clearly, then you can make better, more intelligent decisions.  Of course, this requires availing yourself of resources both from medical sources, drug companies, and from other patients with similar disease having experience with what you are considering.  It’s a daunting job to take on this responsibility and not to just rely on someone else to make decisions for you…but it does wonders for dispelling fear and feelings of helplessness when you become part of the process and part of your treatment.  I don’t mean to say that you shouldn’t find a doctor in whom you can trust and with whom you can talk freely…it is essential to find such a doctor…but it is in your best interest to be a partner in decisions about your care, to ask questions, to bring up ideas for discussion about which you have read or heard, to weigh in your own mind all factors pro and con that are known about any particular treatment, and to think about everything very thoroughly before you make decisions with your doctor.   Your quality of life and the appropriate management of your disease depend on it and you can’t afford to let denial, much less fear, cloud your mind or impede your judgment. 

For 20 years I have worked hard never to let my fear of the unknown lead me to accept treatments for MS that to me, seemed to risk causing more harm to the health of my whole body than it promised to improve the MS.  I never want to take something that has side effects worse than the MS symptoms I already have, nor do I want to risk damage to organs or functions in my body that are perfectly healthy now. I never want to be so afraid that I will try anything without regard for the consequences that might follow.  Only you know how you feel and what you are willing to tolerate and to risk. I urge you to inform yourself, talk with your doctor, your spouse and family, read and do research, then confidently make decisions that are right for you. By doing that, you will gain the strength to forge forward with your life, disease and all.

And when in doubt, remember what Julia Child said, “Don’t be Afraid.”

 

Note:  As I prepared to post this newest blog, I came upon this article posted in “The Health Care Blog” called “Patient, Heal Thyself” by Don Kemper.   In it he states, and I paraphrase here,  that if we want better health care, we should be prepared to be smarter patients.   I couldn’t have said it better myself and I encourage my readers to read his blog along with mine.  I have linked it below.

http://http://www.thehealthcareblog.com/the_health_care_blog/2009/07/patient-heal-thyself-if-you-want-a-better-system-support-a-smarter-patient.html

Advertisements

8 comments

  1. Yayyy mommy!

    You know how I see the facing fear thing… with the Godzilla face. It’s hard to depict in text, but you know what I’m talking about, and even as a silly childhood story, it really is a good way to think about what you have to do when facing a difficult situation 😉


    • YES! That is exactly what I’m talking about, that absolutely determined, gotta-do-what-I-gotta-do attitude that you have to have when facing something that feels bigger than you. I’m so proud of you, you get it!


  2. “I am the only person I know who will prepare something I’ve never made before when I’m having guests for dinner.”

    False, I do that too.


    • …and from whom did you learn not to be afraid? Esther says below that she learned it from Godzilla.


  3. On a more serious note, a friend of mine was recently diagnosed with breast cancer and had both of her breasts removed Monday, which I think I told you about. She had a ‘tata to the tatas’ party on Saturday and on the way home I was recalling the attitude that has gotten me through cancer and other mountains of peril over the years. I very clearly remember the “we just gotta do whatever it takes” talk. I would also cite my refusal to lose humor, even when it seems inappropriately applied, to being able to cope with long term challenges. Fear is a tricky thing to turn off though. Sometimes you can’t, but if you just pretend you aren’t scared and act like you aren’t scared and nobody can tell you’re scared, sometimes you can fake it until it becomes a reality.


    • Thank you Simon, for sharing your story and how you cope by using humor and by just doin’ what you gotta do and sometimes by just faking it…I hope everyone is listening.

      I hope your friend recovers quickly and that you are able to share some of your insight with her.


  4. You found me and now I have found you. What a great post and what terrific advice. I have started writing a blog titled “Denial: A Surviva Skill”. Maybe great minds do think alike?
    Be well. Be good. Be happy.
    Michael
    http://mgerber.blogspot.com


    • Can’t wait to see your blog on denial…great minds on the same wave length! I am so glad, too, that your blog is like mine in sort of story format…I find that so engaging and interesting to hear another person’t story, share the similar experiences and learn from the differences.

      Looking forward to talking with you again soon.
      Jan.



Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: