Sunday, March 03, 2013

a life sequestered: spousal caregiving

“From the forest and wilderness come the tonics and barks which brace mankind. ” 
Henry David Thoreau

With my 1 year anniversary of lung cancer surgery two weeks ahead, I found myself glancing back a year to the Caregivingly Yours entries written a year ago while I was still concealing my diagnosis, alone, afraid and writing to leave a voice behind.

The day before I died on March 1st, 2012 or flatlined during an EBUS biopsy I made sure I posted an entry entitled deafening silence of Multiple Sclerosis awareness.

Hospitalized overnight in the cardiac unit I was sent home to rest before a cardiac stress test to determine if my heart could withstand lung surgery. The day after that test I posted UNLESS someone like you cares - wheelchair accessibility.

Sooo Saturday Mar 2nd 2013 seemed like an ideal day for a kind of 1 yr anniversary Super 5K walk with my daughter around Wildwood Lake. I say super 5K because the main park loop is 3.1 mile or 5 K but we opted to add in the majority of side trails.

Struggling with an acute health issue of my own this past month it seemed homeopathic to inhale “the tonics and barks that brace mankind”.

Most people might never see Multiple Sclerosis because the general population has <1% chance of having MS … Additionally, of those diagnosed with MS the majority may have symptoms “invisible” to strangers. 

That Ann Romney and Patti share the same diagnosis appears inconceivable. 

Our daughter always remarks how whenever she brings up that her Mom has MS, she always hears someone say that they have an aunt or know someone with MS who is "just fine".

As our society learns a new word, and I paraphrase Mr. Rogers, “can you say sequestered?”.  Few have any idea how much living with severe MS as a family for 23+ years has been a life sequestered.

While mainstream media may be biased, social media on the other hand is misleading because it portrays only the story of those able to post on line. Unless a caregiver continues to share the story, people like Patti with severe MS disappear unable to write or even remember their life.

Ironically it was also Theodor Seuss Geisel’s (Dr. Seuss) birthday and I found myself smiling as surrounded by trees I could hear the echoes of both the Lorax and my post flatined entry

"UNLESS someone like you cares a whole awful lot,
nothing's going to get better: it's not."
“The Lorax” by Dr. Seuss

Patrick Leer
Health Activist:
Caregivingly Yours, MS Caregiver @


  1. Patrick, thank you being Patti's voice all these years.

  2. All that "just fine" is, at times, people supporting each others fictions. "Oh, I'm fine. Yes, yes, it takes a little effort in the morning, but.." The reality is very damn different.

    Friends of dad's would visit him for 13 minutes & then go back to the church & say: Frank is fine! And when they asked Frank(many times)he said: I'm fine! Don't worry about me.
    Even if the signs of the Apocalypse were going off the day before.

    Then there is the How Many People Want to Hear the Unpleasant Truth issue.

    When I used to write about my dad's dementia a few people sent me emails telling me to stop being a martyr. Don took note of the fact that none of them were caregivers. ~Mary

  3. When I think of the commitment -- physical and emotional -- involved in what you have done for so long, and continue to do, I can only bow in respect and tell you that you have embodied the meaning of unconditional love.



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