Category Archives: Love and Chronic Illness

Lonely With a Cure

I love you despite your craziness if you don't mind my obsessive drive to eat poop.  Deal?
I love you despite your craziness if you don’t mind my obsessive drive to eat poop. Deal?

It seems I have written before about the gulf existing between Wellville and Sickville. It comes to a point where it feels impossible to remember what it was like to be well or even have one’s feeling truly understood. It is certainly an emotion commonly expressed on message boards and amongst friends with similar conditions. However, there is a side effect to this gulf because it sits between us and those with whom we would otherwise be closest. How many things are more isolating than feeling like those who have known you longest and often best no longer understand what you experience? What’s worse is feeling the only way they would understand would be to have the same experiences and know you would never wish that upon them. So the loneliness problem is a common side effect of any medical condition.

In the U.S., we prize our individualism. We celebrate our poets who could go off into the wilderness to find themselves. We rarely talk about our cultures increasing segmentation and physical divisions. For example, I find instant messaging with in the office to be a terrible, yet common, practice. I am 3 cubes over. Stand up, walk over, and let’s talk. Ten years ago, I heard a presentation where it was pointed out the best way to predict levels of crime in a neighborhood was to find out how many people knew their neighbors first names. I still find it hard to believe how many people do not know their neighbors. As a culture, I guess we go home, shut our doors, eat and watch TV/go online.

No wonder we do not recognize the public health risk of loneliness. How does one recognize the lack of something one is not used to having? Our culture makes being alone seem desirable or at least like we should feel fine being alone. Now there is a growing body of evidence suggesting loneliness is a driver for many adverse medical conditions.

One of my favorite meta studies looked at 70 studies involving more than 3.4 million people who were on average 64 years old at the time of their study. Over an average duration of study of seven years, roughly a quarter of the participants died. Those who reported being lonely were 26% more likely to have died during the study, and people living alone had a mortality rate roughly 32% higher than those living with others. One write-up of this study can be found at lonely.

The double edge of life in sickville is when our illnesses drive away those whom we love. It’s not easy sleeping in a bed with somebody whose spasms wake you in the night. Who wants to be close to a person whose touch can be so warm as to burn, whose emotions and thoughts seem to wander randomly? It’s hard on everyone, and it creates a cycle where illness pushes people away causing loneliness leading to still more illness.

On the more positive side, there is an increase in looking to “fix” the brain rather than just treat symptoms. brain hack

Rather than try to increase the pleasure chemicals in our brain to combat depression, what if we could just fix the part of our brain causing the problem? From my perspective as an MS patient, this treatment route sounds fascinating. If you are studying the circuits in my head, can you just fix them? Will doing so still leave “me” in tact? While you’re in there fixing my circuits, could you please make everything run just a little more smoothly or would a perfectly operating nervous system leave me without anything to commiserate over with others. Would it leave me more lonely?

The part of this study which scares me is the seeming potential to change who we are. It leaves open the question of what exactly make us the way we are. Are our neurosis a key part of us. Love me, love my craziness, but don’t worry we can change the crazy me to a more comfortable me later?

At least my dogs love me the way I am.


The First 3,652 Days of Marriage (10 Wonderful Years)

Many years ago, in a time unlike today, I began a lucky streak, unbroken to this day.
Many years ago, in a time unlike today, I began a lucky streak, unbroken to this day.

This week, J and I will hit a milestone, our tenth anniversary.   After 3,652 days of marriage, I can still claim to be the lucky one.  I married an awesome woman, a great mom, a good cook, a caring nurse and  my friend.  I managed all of this without running afoul of polygamy laws too. I think about all of this in light of research showing MS patients are 40% more likely to divorce than the general public (already grim odds), and like in so many other topics, I am happy our family embodies the role of the exception.

Every year, I include on an anniversary card my favorite saying, though I know not where it originates,

“Come walk with me.

Stay and grow old with me.

The Best is yet to be.

This I believe.”

I think the reason I have always liked the saying is the way it makes sense in so many orders. In my head, the order is frequently swapped to the point where I don’t even know the “correct” order any more. The only current tense relates to a belief in the bright future.  The future in any order speaks to a vision of a wonderful shared journey.  What more could I ever want than someone with whom to share the good life?

Because it’s our ten year anniversary, I’m happy to be able to bring out my other favorite verse to describe the way I would wish to think about our last 3,652 days and my hopes for tomorrow and all of tomorrows’ tomorrow: .

Camerado, I give you my hand!
I give you my love more precious than money,
I give you myself before preaching or law;
Will you give me yourself. will you come travel with me?
Shall we stick by each other as long as we live?

      Walt Whitman (end of Song of the Open Road)

Sometimes, the best part of a shared journey is the feeling of having helped those whom we love and admire. K (age 3) pushed A (age 8) up the hill.
Sometimes, the best part of a shared journey is the feeling of having helped those whom we love and admire. K (age 3) pushed A (age 8) up the hill.