I don’t know

I don’t know. 

Many of you have already heard the first part of this story.  On 6/12/23 my husband was out of town,  I was rushing home to meet the air conditioning repairman.  I had a catastrophic fall.  The broken bones were soon mended, but other symptoms began to appear. Some have noticed that my voice has gradually deteriorated, despite speech therapy.  It’s not only my voice but also chewing and swallowing that has been affected.

We have sought medical care. The first couple of doctors and therapists kept saying, this must be aging with CP.  So, it’s taken a while to get attention.  I’m wondering if this train would have moved faster if I were able bodied to begin with. 

I have challenged my neurologist to put a name on this beast that is attacking me.  As part of that conversation we told her that my father and my grandfather died of ALS.  To understand what happened next, please understand that I have been hoping and expecting that some doctor somewhere would listen to me and claim me.  Well, it happened, she shared a video of me with the motor neuron group and they said “get her tested!”  The tests have shown that I have ALS.  I have not yet spoken with the man who can tell me how long I have. 

I want to take a moment and honor my Dad and my Grandfather.  

My father’s name was Raymond John Deland. He was a meteorologist who, when I was a child he worked for NYU in the Bronx (Shout to Bronx Community College). He is who I am thinking of when I describe myself as a second generation academic.   He was a kind and gentle man. I have read his autobiography. He was crazy about my Mom.  He was diagnosed in 1984, and passed on 4/1/91. 

My grandfather Charles Mervyn Deland, was a very interesting man.  He was a doctor who spent a lot of time in the tropics, and was knowledgeable about tropical diseases. My Dad was born during his service in New Guinea.  He died on 7/11/62.  .  

Of the two I think I may have inherited the gene, at least,  from my grandfather, meaning I have heard that his disease looked a lot like mine. What gives me hope is that medical science has come a long way since 1962.   

Which brings me back to what I was thinking about on the way in this morning.  I don’t know how long I have.  As I stared at that I realized  that none of us knows how long we have.  It is the human condition.  You don’t know if something will happen today, or next week or next month.

Please be grateful for each day.  I get up in the morning and I am grateful that I can breathe. I am grateful that I can still walk.  And I am grateful for my beloved husband, who has not hesitated to step up and walk this journey with me.    

6 thoughts on “I don’t know

  1. We are with you as much as you need, Robin.

  2. Maxine Cooper says:

    I’m so glad that I sent you that scripture and song; for your faith has always been evident to me. His strength is perfect. Thank you for sharing your story.

  3. Anne Mintz says:

    I have long admired your courage and tenacity. It’s now grown exponentially. We stand with you.

  4. Katherine Young says:

    We are grateful for you, Robin, and your courage and candor.

  5. Janice Stapley says:

    I have been out of the loop and had not heard, but will keep you faithfully in my prayers. You make an important point. None of us knows how much earth time we have left, but you are spot on in pointing out that we need to be grateful for all of it!

  6. Jill M Bowden says:

    Your father was one of the best men I have ever known. His grace, humor, intelligence and his deeply evident love for your mother were central to knowing his true self.
    I am sorry that you have to experience ALS, Robin. My heart is with you.
    You have a wonderful role model in your father.
    Much love,

Leave a Reply

Your email address will not be published. Required fields are marked *

Skip to toolbar