Category Archives: Love and Chronic Illness

Looking Back To Better Plot Our Future

K looks out the front door despite being legally blind.  She has some sense of what lays in front of her.  It's a walk she does all the time.  Sometimes, we don't have to know or be able to see the details to know where we want to go.
K looks out the front door despite being legally blind. She has some sense of what lays in front of her. It’s a walk she does all the time. Sometimes, we don’t have to know or be able to see the details to know where we want to go.

We are all blind to the future.  Our ability to predict is limited to extrapolating from what has happened recently.  So often, living with a chronic, progressing  condition requires us to make the best choice we can with the information at our finger tips.  If we are introspective enough, we may look back to see the clearest path to better light the way for those behind us.

This past week, I was lucky enough to read about two such reviews of past events.  One was an MS study looking at the impact of delaying treatment of MS by 3 to 5 years versus beginning treatment immediately on deaths due to “MS complications” over 21 years.  The other study was a study of Harvard graduates over 75 years in an attempt to discover what men need to be happy.

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http://multiple-sclerosis-research.blogspot.com/2014/03/cause-of-death-on-interferon-beta.html

On the MS study, it was conducted from 1990 to 2011 looking at the effects of early treatment for MS patients with interferon-beta.  Realize, 1990 was the beginning of a decade which brought us many advancements in MS care, and care for MS has come a long way in the last 20 years.  For the trial, half the patients were given interferon-beta, and the other half were given a placebo.  After three years to five years, the placebo group received  interferon-beta.  I know it is often said to patients, “ MS is not fatal.”  However, of the 69 patients who died in the intervening 21 years, 78% were judged to have died from “MS related complications” including such things as swallowing problems leading to pneumonia, urinary dysfunction leading to UTI’s and septicaemia, falls with fractures, etc.    The mean age-at-death was less than 52 years for the participants who died.  Those in the placebo group experienced an excessive number of MS-related deaths. 

Keep in mind, interferon-beta is less effective than many front line MS treatments now.  In the past, I have advocated against the strict use of dots on an MRI determining the efficacy of an MS treatment.  I want some measures of mobility and cognitive ability to assess whether a drug works.  There have been a few studies casting doubt upon whether our current front line meds work  in terms of preventing disability, but living or dying of MS complications seems like a great measure of drugs efficacy.  The biggest hurdle to using it as an end point is the time it takes to learn the truth.  This was a result from 21 years of patient data.  Still, it seems this study shows the value of dealing with MS as best we can, as soon as we can.  The failure to do so might just kill us, even if we do not understand the exact mechanism by which slowing our MS prolongs our lives.

To my mind, it comes back to my old motto, “Do what you can when you can until you can’t.  Then go to bed knowing you have done all you could, and tomorrow will arrive anyway.”    As I read this study, the ending could be changed to “…OR tomorrow’s tomorrow  may not arrive at all for you.”

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http://www.feelguide.com/2013/04/29/75-years-in-th-making-harvard-just-released-its-epic-study-on-what-men-require-to-live-a-happy-life/

The second study, the one of Harvard graduates, began in 1938 began with over 200 Harvard men and tracked them into their nineties, well beyond traditional retirement years.  It tracked a huge number of variables from political leanings to social lives to various physical conditions.  The study is fascinating if only to track a cohort of men through their lives. 

It’s not exactly a representative sample. The  sample isn’t just college educated men. It’s men privileged enough to go to Harvard. When it talked about the drop in average salary from bad choices, I kept thinking my grandparents would have liked to have a salary big enough to have so far to fall. However, I think many of the points likely apply to us all. Drink and drugs were the mostly likely to derail a good life. The warmth of our relationships in large part determine our happiness, and our health in old age is mostly determined by our decisions and habits as adults not our genetic make-up.

I think of this study with respect to MS, and it is a bit terrifying.  According to the MSresearch blog, MS patients are twice a likely to divorce as healthy people.  Many MS patients become clinically depressed.  So often our ability to relate to health fades.  I no longer remember what it is to be without pain, to be clear headed, to feel strong.  Maintaining warmth in our relationships is a challenge to all sides.  Yet, I can tell you the warmth of my relationships maintains me and my peace of mind.

I would like to think some of my habits will help me as/if  I age.  In the study men’s old age health was better linked with their choices than their genetics.  Towards that end, what began with taking stairs rather than elevators has progressed to running and rowing three or four days a week.  My family has a history of heart disease and cancer, but if one believes this study, what I do matters more.

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As I thought about these two studies this week and doing what seems best with the limited information I have when I don’t have all the answers, I think of this quote:

…I would like to beg you dear Sir, as well as I can, to have patience with everything unresolved in your heart and to try to love the questions themselves as if they were locked rooms or books written in a very foreign language. Don’t search for the answers, which could not be given to you now, because you would not be able to live them. And the point is to live everything. Live the questions now. Perhaps then, someday far in the future, you will gradually, without even noticing it, live your way into the answer.”

Rainer Maria Rilke, 1903

Maybe these two studies will let us see a tiny sliver of the answer.  If we are lucky, maybe we will live our way to the next peace of the puzzle.  If we are truly fortunate, we may even have a  chance to light an easier path for those who come after us.

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“Simply Pretend that You Can Build Them Again…”


My favorite quote on Love comes from the great wordsmith, Mark Twain. 
“Love is the irresistible desire to be irresistibly desired.”
I was writing last week about the insecurity in the face of life’s challenges and how hard it can be to deal with them.  I think the areas of sex and intimacy highlight how important physical relations can be for one’s self confidence.  One of the worst feelings is a sense of self-disgust, and we all take in a lot of our self-image from how people, and family in particular, act towards us. 
Is there a worse feeling than thinking your spouse sees mostly your condition when they see you?  Who wants this to be the first thing their spouse thinks of when thinking about them?  True or projection of fears, how does one move beyond these feelings?
So often with chronic illness in the family, it seems easy for the desire to be lost in the day-to-day bustle and hassles.  It is easy to think the love felt for each other will always endure.  It is easy to allow feelings of exhaustion crowd out expressions of enthusiasm.  What happens when expressing these feelings comes with a load of expectations?  Worse, what happens when one side thinks the expressions are obligations?  Who would want that?  The spousal relationships should be a source of strength and rejuvenation, a source of energy not a drain or a worry. 
Having children with special needs is not very different.  I was at a seminar last year where the speaker quoted a stat saying almost 60% of parents of children with special needs divorce.  I am torn on the stat as that is not terribly different from everyone else, but at the same time, it underscores a trap in which it seems easy to fall.    
My wife and I have long been in the expressed opinion Valentine’s Day should be how we treat each other every day, but taking this approach walks a dangerous line.  Over the years, my thoughts have tended towards this line of thought being backwards.  I think it better to believe every day should be like Valentine’s Day with rushes of intimacy in a glance, a smile or those wonderful moments of physical intimacy.
For all those finding illnesses in the family have taken some of the luster from their relationships, I will end with words from another great wordsmith, Paul Simon:
Hang on to your hopes, my friend.
That is an easy thing to say,
But if your hopes should pass away
Simply pretend that you can build them again.
  • A Hazy Shade of Winter
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