Category Archives: acceptance

If We Don’t Aspire to Normalcy, Why Do We Wish It for Our Kids

As individuals, many of us with chronic illnesses are prepared to live different lives from the main stream whether it means accepting physical limitations in the way we do things or odd, sometimes questioning looks because of our appearance.  Still, I don’t know of anyone who wishes their kids to live outside of Wellville, where all of the healthy spend their lives.  Why do we try so hard to make the case for our lives being as good, as full and then wish for other types of lives for our kids?
I was forced to ask myself this question as A relished getting an American Girl doll as a Christmas present from my mom this weekend.  In the past, she has refused to play with dolls saying only they scared her.  Meanwhile, she was playing with all of her stuffed animals like most girls play with their dolls.  I used to wonder if there was something comforting in having them be so unlike her.  It’s easy to say I want her to feel comfortable with herself, and I worry the creepiness she felt with the dolls reflected a discomfort with herself.  However, I wanted her to like dolls also because they represent another way for her to bond with kids her age.  If given a choice, I would put her as firmly in the Land of Normal Life.  Why, I don’t know other than to say the bit about self image and bonding with her peers feels incomplete when I try to explain the why I felt happy to see her playing with Rosy (her name for her doll).

On the MS front, I was reading the Medical Letter published by The Medical Letter Inc., and they quoted a randomized double blind study from Europe showing BG-12 reduced relapse rates between 53 and 48% versus placebo.  The range is because some patients were given 2 doses a day and others 3.  Noteworthy is the part about it significantly reduced the rate of disability progression which is the first potential front line MS drug to do so.

It also wrote up Campath(Lemtrada) which had a 49% reduction in relapses.  During the 2 year study, 20% of patients treated with rebiff sustained accumulation of disability compared with 13% who were treated with Campath (Lemtrada).

The article was actually about Teriflunomide, but with only looking at success inhibiting MS progression, I didn’t see a lot to recommend it over the existing front line drugs other than it is another oral medication.  BG-12 actually looks like a mid road between the existing front line meds and Tysabriwithout as much known risk.  

I would link the article, but it requires a subscription.  I was given a copy of it by my sister-in-law.

(To continue reading proceed to the next page))

On the cool to me side, two things happened this week.  I finally submitted my data request to patientslikeme.com in an attempt to get data for a study on the seasonality of MSsymptoms.  I mentioned the study I would like to run in an email later revised back in April  http://thelifewelllived.blogspot.com/2012/04/meaningful-success-or-failure-both-only.html.  I only just now had time and energy to revisit the study proposal.  I changed the original to define the 5 symptom categories and specify I would only look at the 100 most frequently reported MS symptoms.
Secondly, I was interviewed by a reporter for the Financial Times of London on how social media like Patients like me (linked in my useful sites list above) influences my choice of MS treatments.  We talked about it as a source of data for studies patients, and how it is a useful tool for patients tracking their medications and conditions.  The issue of privacy came up as patients are willingly giving up personal information, but I still maintain the public good is well worth the risks.  Of course this is easy for me to say as I work in an environment where I don’t have to hide my MS.  As a side note, I find it a little funny after 15 years working producing and analyzing economic data to have my first interview with the Financial Times be about my postings and use of a web site I use to learn about my MS.    

Note in response to a few requests, I have added the follow by email to the bottom of this blog.

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The Scarlet Letter of Disability and Mental Health

 I usually only write once a week. However, I wanted this out, and I didn’t want to publish it Christmas Eve.  I wanted it out before I forgot, before it no longer had the cultural touchstone of another mass murder.  I wanted it out of me because I feel the weight of the media driven perceptions of all those with mental health conditions.  I suspect I will one day join the ranks of those about whom a generation of perceptions is now being formed.

Illness brings a stigma in our society, a scarlet letter if you will.  In an effort to be politically correct, people feel bad blaming those with obvious physical ailments.  Everyone understands those, or thinks they do.  Still, there is often a perception of special treatment even if it is mitigated by the thoughts that those afflicted made no choice and in fact did nothing to merit the condition.  Because there is a thought it could happen to any of us, we accommodate to the best of our ability. “Do unto others as you would have done unto you.”  We generally act how we think we would like to be treated, when we take the time to think.  It’s only in the initial blink or unthinking comment or feelings of our own merits being secondary to the disabled when we have the resentment so commonly felt by the disabled.
   
The stigma on those with mental health issues is far worse.  People can’t see the illness, only the actions.  There is a fundamental belief/value in our culture of taking responsibility for our actions.  The problem with the mentally handicapped is they often have no more control over their thoughts and actions than the boy born without legs had in his physical condition.  As I see it, the perception of those living in Wellville about being responsible only for one’s actions breaks down here, and with this breakdown empathy and understanding are often lost.

Without empathy and understanding, society is quick to condemn.  “Why would they do that?” quickly becomes society’s cry.  Without understanding, fear and outrage come easily, and the target is unspecified.  Without empathy, why should anyone care what triggered the disturbed?  We care only when we understand and approve of the cause like post traumatic stress from a war experience.  If we don’t know the why, we judge the actions and then from them expand the pattern we think we’ve recognized to any  with a condition we think is similar.

It’s here where the sad media does a disservice to all others with the same condition.  There is so little to help society recognize a different pattern.

Towards that end, I would implore all to break the pattern.  Weave a different tapestry from which future generation can gain insight.  Live out loud and where ever possible let the stories of your efforts and trials be known regardless of outcome.

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