I cry as if someone is dying because someone is, in fact, dying. It’s me. I am dying. Evan holds my hand, reminding me to breathe, which is good advice because now I can’t get enough air. I would clench my hands into fists of desperation, except all but the middle finger on my right hand lie dead in the water, totally immobile. I haven’t been able to move my fingers in months, never mind my arms and legs. It’s all part of dying of ALS.
And I’ve just remembered that – I have ALS, and there’s no treatment, no cure. It’s worse than cancer because there is no hope, worse than AIDS because there is no why, and I have it.
I’m crying because I am afraid of death, and I am so young – only 32. But mostly, I am crying for Evan. He has told me multiple times that he will never remarry, and he doesn’t think he could ever fall in love again. Brick by brick, as sure as I am dying, he’s building a wall around his heart with only us inside. On the one hand, I love the wall. It keeps us safe, makes me the love of his life. And yet, as scared as I am of being replaced … 50 years is a long time to be alone.
That’s why I am going on a ventilator when my lungs fail. For those who are new to this sick game, that means life support. What this means in day to day terms is I will have a 15 lb machine the size of a dictionary or phone book attached to my body by a tube that leads to a hole in my throat. I can have it beside my bed or attached to my wheelchair, so I’m very mobile.
But… There is a but coming… I will need round the clock care. Someone has to be awake to suction my lungs if the alarm goes off. It may go off every hour. It may go off every eight hours. That’s a gamble we are willing to take. What we know for sure is that we can kiss privacy goodbye. Most of the caregivers we have now are very careful not to intrude. However, some will sit down in the middle of a family gathering and try to join the conversation.
So when I remember that I have ALS, I am inconsolable, I am grieving for what I have lost, and what this will eventually do to Evan. You see, ALS keeps going even after I go on a ventilator, forever and ever until I’m dead.
How I Live Now: Life With ALS 
I’m so sad and sorry that you’re dealing with this cruel illness. I lost my Mother to this horrible illness. I don’t understand why such bad things happen to good people. It’s just hard to comprehend!
I do believe everything here on earth is so temporary, and there is a heaven that is so much better than this. I believe you and your loving husband will be reunited once again in paradise. You are correct; we are all dying and just making our way home to the next life where there is no more pain, no more suffering and no tears there. You will remain in my prayers.
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Thank you for your gut wrenching lay honest account. I want you to know that I believe you are choosing the ventilators because you choose life. When my husband Rasjad was dying of ALSb at age 62 he wanted to know if I would ever remarry. At that moment every fiber of my being was dedicated to his care I said I’d never replace him. After he passed away I began to heal and have found a fantastic partner. I can never replace Rasjad and he helped make me the Woman I am now. But I have the right Togo on with my life and be happy. What I’m telling you is that your husband can’t possibly think of a future without you right now but eventually he might even if he never forgets you.
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