Comments on: Two Worlds

By: Diane Muldoon

Diane Muldoon — Thu, 22 Sep 2016 01:49:50 +0000

I used to tell my husband that everyone around us was planning retirement and fun things. He said…They can plan away…life as we know it changes in a second.

Selfish me would give the world to have him back in his hospital bed, touching me with his one good hand, talking with me on the alphabet board. But, in seconds I know, that I would never ever want him to suffer again like that…He did more than his share. He is now on his next journey. I am stuck with the severe pain of such terrible loss. My task, like all of us, is to play the hand we have been dealt, the best we can. Shitty is right.

So at my ripe old age, I am raising my three young grands..with my son on the street shooting Heroin. This aged grandmother advocates in the school for the boys with AD/HD and takes tons of naps while they are at school. When I am stronger…God knows when, I will visit again the ALS clinic.
Sending love to you. Admiring your gift from God of articulation and sharing. xxxooo

By: Joe Robinson

Joe Robinson — Wed, 21 Sep 2016 11:00:21 +0000

Sarah , you paint the picture very well. The mental part of this illness has to be as difficult as the physical part . Why you and other ALS people have this disease and others of us do not , I really do not know . I do know this , you and my daughter Carrey Dewey , put a perspective on life . I do pray for the Miracle and for strength both physical and mental for ALL those dealing with this illness , including family and caregivers .

By: Jodi aleszka

Jodi aleszka — Wed, 21 Sep 2016 06:52:18 +0000

Hi Sarah, i am a caretaker and wife of Blair, who has als. I sighed a big sigh when I saw the title of your post- two worlds. How true. Long before Blair’s diagnosis we had gotten together and one of the most amazing aspects of our relationship was our ability to have empathy and understand one another. We were both healing and rebuilding from a messy past and were on a journey together of rebuilding. We were so in tune with each other – knowing each other’s hurts, needs, triggers, and being highly sensitive to them. We boosted each other up and, although hard, it was an exciting time. We lived in the same world. Today, I can’t even imagine what it’s like in his head with this “new” world. I have failed him many times at being able to anticipate his latest struggle, let alone be sensitive. My mind still has to live in the other world, paying bills, secureing myself a career and pumping up my 401k for retirement. I have to fathom how this upcoming election will effect the future of the country or how many more miles I can put on my car before I need a new one. The road we traveled together with its similar concerns has split. He blurted out to me the other day, “you get to go to work and shine and forget!”. He is right, I do. And I relish it. I have time away from the disease. He has no respite. The lonliness in his eyes is heartbreaking. This road he travels, he ultimately travels alone. I can’t even begin to fathom where his mind goes when he gets very quiet. I will always be here for him, but we exist in two parallel worlds.