Friday, May 4, 2012

Becoming Sam...

I am a happy, generally positive person who loves life and having fun with my family and friends. A year ago I thought I was developing allergies and have spent the last six months being tested for many things until this week when I received a devastating diagnosis. Now I am trying to figure out how to keep my positive attitude and live every day to the fullest while looking for ways to turn my health around and get back to normal regardless of what the medical community says.

After months of tests and visits and updates on what might be wrong, then being told what its not – which can be a big relief while you are still waiting to find out what it is – I finally got a real kick in the ass sitting in the doctor’s office earlier this week.  

I have never been to medical school myself, but I have watched it on TV, and I can say that if they are teaching these doctors to give bad news, they need to reevaluate the curriculum for that one.  After all this time, don’t revert to medical lingo and try to hide what is really being said behind unnecessary terminology.   Seriously, no one should have to drag the answers out of their doctor like I did, but what it comes down to is they have concluded on a diagnosis of Progressive Bulbar Palsey, or PBP.  This also is classified as Bulbar onset ALS, a motor neuron disease that the medical community has no cure or even any real treatment for except to manage the progression as it happens.

In other words, they are saying that the ability to communicate, swallow liquids and eventually food, and the ability to just breathe will all deteriorate until I can no longer talk at all, a feeding tube will need to be inserted, and eventually, a respirator may be necessary.  IF it progresses to ALS, which is not certain but likely in their opinion, my arms and legs will also begin to weaken until I will no longer be able to use them so a walker then wheelchair then immobility could set in which means being confined to a bed.  The progression could take anywhere from a few months to 5 years in my doctors opinion (which I had to ask), but she was kind enough to point out that I have already been symptomatic for a year so take that off the front end I guess.

There is nothing about that diagnosis that is good news.  No one should have to tell another person this, and no one should have to hear it.  As it turns out, once you do hear it, it becomes necessary to turn around and tell it to a whole bunch of other people, people you love and don’t want to hurt … like my son.

How do you tell a 15-year old this kind of news about his mother?  I am sure there are many schools of thought on how to do it right.  In fact, I probably could have Googled it for some advice, but instead my husband and I just did it our way…with honesty and sadness and love.  It wasn’t easy, but we got through it together and now we forge ahead as a family to whatever is next.  There will be tears and laughter and arguing and challenges to face just like before, but we will face them together, as always, and no matter the situation, we each know and feel the deep, powerful love that binds us.


  1. Dear Sam, I am right here beside you as you begin this journey.
    Peace, Love, Light and Strength be with you, Beautiful One with Seriously Curly Hair and Chrystal Clear Blue Eyes.
    May the Divine Light Surround and Protect You,
    Aunt Mary