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May 8, 2011

Through One Journey into the Next: A Son's Accompaniment

I have written before that sudden deaths bring their own kind of bristling, shocking pain to those left behind. On the other hand, the pain that comes from watching a loved one suffer for a long period of time is no less great and requires physical, emotional, and spiritual stamina that can challenge one's every fiber.

I hope that this thoughtful essay from W. Charles, which describes our mother's journey through what he calls "brutal" and "barbarous" illness into the journey that followed will touch chords with those of you who have had similar experiences.

My grieving process over my mother’s passing might not be considered usual.  Before describing that process, I will say that I use “passing” not as a polite euphemism for “death.”  I have no problem using the word “death.”  As should become apparent, I feel that rather than dying, my mother passed from this existence to another.

I will also say two things about the picture that accompanies this remembrance.  It is my favorite picture of my mother, and this image was key in dealing with my grief.
My grieving process was not usual because the vast majority of it was completed before my mother’s body ceased living. 
In some ways my mother’s health was always frail, but it took a downward turn in 1988, and that began a slow and brutal battle that lasted over thirteen years.  Ysabel can attest to this, as she is my sister.  It is with maybe 1% hyperbole that I say that for our mother every single day was worse than the preceding one for thirteen years. 

There were two primary culprits in her demise: Addison’s Disease (an adrenal deficiency) and a connective tissue disorder called Ehlers Danlos Syndrome, or EDS.  A medical description would take some time, so suffice it to say that each of these conditions exacerbated the other.  Over time the effect was that her body literally collapsed. Slightly bumping into an object would cause deep and expansive bruises that would last for weeks. Coughing hard and sudden movements of any kind would cause tiny fractures in her ribs and vertebrae and other bones. One effect of EDS is that the body takes longer to heal, thus leaving the body susceptible to re-injury and vulnerable to new injury, and all of that happened with my mother.  She lost about nine inches in height through her ordeal.  That caused tremendous pressure on her organs and bodily systems, causing not only malfunctions but tremendous pain–pain in addition to that of the bruising and fractures.

Then about halfway into this nightmare came something particularly cruel.  Have you seen the recent lawyer TV ads about possible lawsuits for people who took the drug Reglan and developed something called “tardive dyskinesia?”  I know that lawyer ads like that can cause derisive laughter, but I assure you that tardive dyskinesia is real, and is no laughing matter.  My mother did take Reglan, and that did result in her having tardive dyskinesia.

As noted in Wikipedia, tardive dyskinesia is characterized by repetitive, involuntary, purposeless movements, such as grimacing, tongue protrusion, lip smacking, puckering and pursing of the lips, and rapid eye blinking. Rapid movements of the extremities may also occur. Impaired movements of the fingers may also appear. For comparison, patients with Parkinson's disease have difficulty moving, while patients with tardive dyskinesia have difficulty not moving.

Tardive dyskinesia caused my mother’s tongue to often move uncontrollably, at which times she would be unable to speak or eat.  Her eyes would sometimes move rapidly and render her incapable of focusing on any object.  Other uncontrollable body movements would result in the bruising and fractures I mentioned earlier.  She eventually lost almost all ability to use her hands.  And most significantly, tardive dyskinesia affected her diaphragm, meaning she could not breathe, and she came close to dying several times because of this one symptom.

And this was her life every day...for years.  Alhough it might be hard to believe, I have not come close to describing the full extent of her symptoms and suffering.

Watching my mother go through this was beyond excruciating.  However, for me there was something that made it even worse than one might expect.  On a Sunday night in late September 1988, I had a phone conversation with my parents.  Afterwards, I had an experience I wish I never had.  Call it a vision or a revelation or any other similar term.  In an instant, I knew what was going to happen to my mother.  This was not just a feeling or a guess.  This was information conveyed to me, and it was clear and unequivocal. I knew that she was going to go through a long, barbarous illness–and that there was nothing I or anyone else could do about it.  Indeed, no medical professional ever came close to solving the dilemma that was my mother’s health. For instance, after contracting tardive dyskinesia, she spent a week at the Mayo Clinic, and the doctors there were completely mystified.

I did not wish for my mother to die, but I did pray for an end to the pain and torment that relentlessly and mercilessly attacked her for so many years.

That release finally came on September 11, 2001.

My grieving process had been ongoing for 13 years by then, and when Ysabel called me that afternoon and said simply “You need to come home,” there was sadness in my heart, but there was also a huge sense of relief, knowing that our mother was then free.

Still, there was grief to deal with, and as odd as this will sound, the fact that she passed on 9-11 was important in the next steps of my grieving process.  Our father, Ysabel, my other sister Susan, and I believed that it was no random act that she passed away on that particular day.  As Ysabel noted in her beautiful eulogy, our mother had a sign in her office which said “The greatest privilege of a Christian is to serve.”  Our mother was most assuredly one who practiced what she preached.  She spent much of her life in service to other people. 

As we were about to leave the hospital on the night of 9-11, Susan (who passed on in June 2010) said that perhaps our mother decided to leave this world on that day because she was a soul ready to leave, while there were thousands of other souls that left that morning who were not ready and that she could help them.  That made perfect sense to us.  And we were not the only people with that thought.  Over the next week, many people told us the same thing.

And now I finally get to my favorite picture of my mother...As I tried to sleep that night, I wondered whether the death of her body had truly freed her.  I wondered whether she would be able to do what she wanted.  Anxiety began building within me.  And just when that anxiety was about to break me down, my mother appeared to me in a vision–and rather than appearing as she did in her last years as physically broken, she appeared exactly as she looked in that picture: youthful, brimming with life and promise, and, above all, smiling.  She did not speak, but as she gazed upon me with a renewed spark in those amazingly deep eyes, she nevertheless told me, “I’m fine.  I have things to do.”

I smiled and then peacefully drifted off to sleep.


  1. Dear Charles,

    What a beautiful and touching mother's day tribute to a valiant woman. It was a privilege to know her and a blessing that she left you, Susan and Ysabel as my extended family.

    Warm regards,


  2. Thanks, Joe. Know that we are equally blessed to have you as part of our extended family. :-)