Thursday, October 13, 2016


So it is officially, officially confirmed.  A third opinion.  I am a person living with ALS.

I went to Penn and I met with one of the director's of the ALS clinic.  (Some of this you might already know as I am writing on this blog AND posting on Facebook, which I am going to begin to limit my time on, but I'll get to that later).  I love her.  She was warm and compassionate, realistic and practical, understanding yet data driven.  Everything I needed her to be and more.  She explained everything to me in terms I could understand.  She asked about my kids, and the impact this is having on the family, and she answered every one of my questions.  But the one thing that she said that I keep going back to is "This is not your fault.  You did nothing wrong. You are doing life right."  Those words keep ringing in my ears as I work through this awful experience.

You see I was talking to her about health insurance, and disability, and all those things you have to think about when you are diagnosed with a life changing disease.  And I was telling her about how those things work in my family.  And she said, "This is not your fault.  You did nothing wrong.  You are doing life right."  I understand she didn't mean that there is a wrong way and a right way to do life.  There isn't.  I know she meant that there is no way that one can prepare for something like this.  No way for you to know that at age 49 your life will turn upside down.  No way for you to know that all the things you planned for have to be put aside.  I know, I am so dramatic.  Or as my son would say, "Mom, are you crying again?!"

I am starting on a medicine that will hopefully slow down the progression of the disease.  I have started new meds for anxiety and depression, and an additional med that will help with the charley-horse cramps I have every night.  I am wrought with guilt over not being able to work.  I can't even seem to communicate with my friends who are substitute teaching for me right now because I just feel so awful that other people have to do my work.  I know I shouldn't feel guilty.  I know I shouldn't feel anxious.  But I do.  My feelings and emotions seem unreasonable even to me.  I am grieving for me, my husband, my kids, my friends, my family, and even for the women about my age who look at me in the supermarket and are thinking, "my G-d, I hope what happened to her never happens to me."

Intermixed with all this grieving and guilt and self pity, I have moments of clarity and gratefulness (is that a word?).  I think often of the things that are the same and things that are different.  And not everything that is different is bad.

Same:  The love of my family.  The love of my friends.  The unconditional love of my dogs.

Different:  How often I tell my friends and family I love them.  I say it more.  And mean it more deeply.

Same:  For some reason, my husband still thinks I am sexy.  (TMI?  Too bad.)

Different:  I believe him more now than I used to.  Weird, huh?

Same:  My desire to be in control.

Different:  My inability to always be in control.

Same:  My intolerance for mean people and cruel intentions.

Different:  I am more willing to call people out for meanness and cruel intentions.

These are just a few.  I think of them often.  I should write them all down when they come to me.

In a few weeks I will go back to Penn, but this time meet my doctor at the ALS Clinic.  Here I will also meet with my multidisciplinary team - a nurse practitioner, an occupational therapist, a speech therapist, a physical therapist, and others.  They will work together with me and come up with a plan, and guide me and support me through this process.  I am so grateful to have found this facility.

I am making some plans.  Some long term, some short term.  Fun things.  Painting and wine with friends (that will be some painting - between the loss of dexterity in my hand and the wine!),  a few possible trips, going to see Sarah next weekend at college, the Take Steps Walk for CCFA  this Saturday (is it still a walk if I now roll?), and plans to attend baseball games and band competitions.  I am also trying to come to terms with my faith, and my new relationship with G-d.  There are questions I have, and I am hoping that my faith can help me with the answers.

So I see that even though I started this blog post angry and sad, I have come to the conclusion that I can still see light.  I am slowly moving toward a place where I can be happy and sad at the same time.

Live to love.  Love to live.

1 comment:

  1. Amazing. You are definitely teaching us all how to live with the unexpected and find lessons in the unthinkable.