My heart broke today. I know many of you are busy celebrating unity but my heart broke with such a resounding crack that I cannot be quiet about it. I found out today that I'll never again hear my mother tell me that she loves me. Right now, it hurts so bad, I can hardly bear it.
The voice that sang lullabies to me; the voice that encouraged me in every adversity I ever faced; the voice that greeted every birthday, Christmas, and special event in my life and the lives of my children; the loving and supportive voice that has been a constant in my life has been silenced.
Granted, I've known for a few weeks this day was coming, but somehow that doesn't make this moment any less painful.
Last August, my mother mentioned her right foot felt "funny." She said it was heavy and felt like it was dragging when she walked. There was no injury, no illness, it was just that way one morning when she woke up. Over the next few weeks, the feeling spread up the leg and then to the left foot and leg. Off she went to the doctor and the tests began.
On the day before Thanksgiving (by now her hands and arms were showing similar effects,) we were stunned to be told by a group of specialists that Mom had ALS (Lou Gehrig's Disease.) She doesn't fit the profile and it was a shock. The disease has been progressing with a ferocious rapidity. Since that day, Mom now needs a hospital bed, oxygen, a special wheelchair because she cannot sit up, diapers, a nurse, drops in her mouth so she won't drool, and other assorted indignities. This amazingly independent woman has been betrayed by her own body.
There is no treatment for ALS. It strikes about 10,000 Americans each year. It leaves the mind intact while wasting the body. Eventually, the ability to take nourishment and even breathe are diminished as the muscles in the chest and throat give out. Typically, the patient will succomb to respiratory failure. My mother has refused a ventilator and gastro feeding tube, which would extend her life briefly. Of course, her overriding concern is how much all this will cost, because she is worried about my father, as is her style.
Over recent weeks, Mom's swallowing and speech have begun to be affected. Lately, she has only been able to speak in the mornings (too tired later in the day) and is, as my brother described it "she sounded like a drunk with a mouth full of marbles," very hard to understand. Today, we don't even have that any longer as Mom is no longer able to speak at all.
And we know what is now on our nearest horizon. Today we lost her voice and soon we will lose her entirely.
My mom is an incredible woman. She survived the Great Depression. She cared for her parents in their home when they were in their extremis. She raised three children and cared for a husband disabled in a terrible accident. She ran her last marathon at age 76, and was angry the doctor told her to stop running then, but she took up piano lessons as a new hobby. She tended me through various surgeries and supported me through an ugly divorce. She has been a role model for perservence and love for her children and grandchildren. She has been a devout and active member of her church throughout her life. She has always been involved in various charities and beloved by her neighbors for her constant willingness to extend a helpful hand. She has been a loyal and devoted wife to my father, through good times and bad, for almost 65 years.
I live about 300 miles away from my mom. Due to certain health conditions, travel is difficult for me. I've been calling Mom every day to "be with" her. I won't be able to do that any more. I think what scares me the most is that if not being able to hear Mom's sweet, loving voice any more hurts this bad, what is about to happen becomes unimaginably painful.
UPDATE: To each and every one of you that took the time to read this, for your gracious kindness, thoughtful remarks, warm empathy, and sharing of your personal losses, my gratitude. I'd hug each of you if I could. I came here feeling such despair and you have each given me a measure of comfort, hope, and a feeling of being blessed, as well as feeling just a little less alone with this, that I will never forget. You are each a bit of the miracle of humanity and a place known as Dkos. For this woman, today, you each made a difference and I thank you for that.