Last fall I wrote about an experience with my pulmonologist that left me shattered.  I was forced to look carefully at my feelings about health care professionals who would see me through my ALS challenge.  This update is more upbeat, I am thrilled to report.

I did change neurologists.  The doc who gave me a second opinion, soon after I was diagnosed, is kind, compassionate and a great listener.  Our personalities just click, and he knows intuitively what I need from him.  He touches, he makes eye contact and I trust him.

On my second visit to the pulmonologist, I found a much more caring individual.  He had recently recovered from pneumonia.  He was patient, waiting for me to type my comments and questions.  Because I was ready for him on this second visit, I was prepared to ask him very pointed questions since he had offered answers before I was ready, the first time I saw him.

I know that Chris wasn’t prepared for these questions, but it was good that he was with me to hear them.  I asked, “Since I have decided not to have a tracheostomy and ventilator, what will happen when that is proposed, and what will my situation be prior to that proposal?”  He answered, “you will be using the bi-pap all the time.  When you refuse the trach and ventilator, Hospice will be called, and you can go home.”  I asked, “how long before death will come?”  And he answered, “It will only be days.” 

I was surprised at how relieved I felt after asking those questions!  And, if he hadn’t paved the way for such an honest exchange, I have no idea if or when I would have been able to ask.  So, once again, I am surprised at the serendipitous nature of this journey.

A few weeks ago, I returned to Longmont for a cleaning appointment at my dentist’s office.  The cleaning experience was somewhat difficult, since my ability to have my mouth open for prolonged periods is hard.  The whole process of having instruments in my mouth, my overproduction of saliva and my proclivity to choking combined to bring my awareness that I would not be able to do it again in six months. 

My dentist has seen me through some tough times.  When I had to have a front tooth removed and an implant placed, I was devastated.  Upon first meeting him, I had to remove the temporary tooth, exposing a large gaping hole.  Tears streamed down my face and I was embarrassed.  He gently comforted me, patting my shoulder in the most tender way.

Over the years, we looked forward to my visits.  Seeing him and his assistant was like visiting old friends. After leaving my position with the City, in 2007, I kept going to him, rather than finding a new dentist, closer to home.

So, on this morning after my cleaning, when he came in to check my teeth, we were clearly happy to see each other.   As usual, we laughed and joked, with the mutual knowledge of my deteriorating health suspended invisibly between us.  When I got up out of the chair, I typed this message to him.  “I think this will be the last time I see you.”  He grabbed me, held me tight, and sobbed.  I cried with him.  After a few minutes, we walked out, arm in arm.  When we reached the main office, he whispered in my ear, “you take care, stay strong and I will pray for you.”

How many people are this fortunate?  This incredible man has been far more than just my dentist.  He has been my friend.  We had a special bond that has enriched my life.

A few days ago, I had a few errands to run.  Preparing for my outing, I shampooed my hair and meticulously styled it, applied make-up (a rare occurrance these days), and put on an attractive outfit.  In the past, this process would have taken 45 minutes; now it takes about 90.  But leaving the house, I felt almost normal.

I stopped in a boutique pet store to buy Mollie a buffalo bone, knowing that it would keep her busy for hours, keeping my guilt at bay, because I cannot walk her like I always did.  Like the dog in The Art of Racing in the Rain, she knows that I am fading.  I see it in her huge brown eyes, and I am sad.

When making a simple purchase such as this, I don’t typically bother to bring in my iPad to communicate.  I smile, nod, voice mmmm, and bye.  This time, the clerk asked, “How is your day going?”  I smiled and muttered, mmmmmm.  She said, “you aren’t feeling well, are you,” as she handed me the receipt to sign.  She followed with, “I hope you feel better.”  I shook my head from side to side without thinking, as if to say I won’t get better.  I wrote on the back of the receipt, I have ALS.  This stranger’s face fell.  Her eyes became so soft with compassion, and she said, “Oh Sweetie, I am sooo sorry!”  And, then, almost as an afterthought, she said, “well you look beautiful.”  I gestured “Thank you,” and walked out of the store.

I couldn’t help but think, “yes, that was always my intention.  Looking good was a prime motivator.  When I looked good, I usually felt good about myself and the world around me, and now the body that I constantly criticized for not being perfect, is failing me.  My focus has changed.

My focus has changed to what really matters.  The kindness that surrounds me and blesses my life is overwhelming.  Friends, family, doctors and many strangers have all exhibited loving kindness toward me.  There is so much love offered through words, a look, a touch, email, Facebook, everywhere.  I drink it in and it brings me contentment and happiness.  The peace that comes from this sustains me and I am grateful.

 

 

Advertisements