Nov 06, 2014 at 09:43 AM

ALS - A Companion's Perspective...Ben's Perspective

By Ben Trust

Today, as every day – I should be working. I need to keep working because the responsibilities I have today are more than ever.  

José and I both had left our jobs and sold our primary residence a few years ago…. We had taken a year off and were just establishing our own business, consulting small companies on growth strategies. During that time, José had been complaining of leg cramps and twitching. We would never have imagined it was ALS. The following year was a blur. Not long after moving away from Rancho Mirage to Santa Barbara, José’s mother suffered a stroke. We closed out her home and moved her to assisted living. More responsibility.

ALS - Ben Trust
Ben Trust

What does it feel like to watch your companion slowly suffer the effect of this disease? What does it feel like to have the financial ax hang over you as you come out of shock and try to figure out how to support all of this? I am 51, a former executive in the music industry, trying to make a go of it. Not many jobs out there in music and, honestly, I never really loved the industry anyway. I am now working with a team of people working hard to raise money to buy a software company with potential. Though sometimes I think investors want no risk. So, my life has not shortage of stress. How do I feel? Numb. Stoic. Moody. If I spend enough time alone with my thoughts, I do get weepy.

I want every day with José to matter. I want to stay in Santa Barbara, take him to the beach as much as possible. I want him to look out our window and enjoy the beautiful view we have of the ocean and the mission. I want to provide every bit of help, be there to hold him, and be there to help him.

Do I sound down? Maybe. I don’t really know. Will I get this all to work? I suppose I have no choice. If you see me looking a little sad, or just quiet - don’t worry - I am just still taking it all in. Its not easy.

Ben Trust and José Cofiño have been together for nearly 17 years. They have worked together, lived together and now are facing the biggest challenges of their lives: physically, financially and emotionally. Together.

Posted in Living With ALS.

Nov 08, 2014 Arrow1 Down Reply
Robin Leventhal

One day at a time my friend - one day at a time. Each one is precious. You are strong, you are smart and you are handsome. Chin up! Kiss and hug your boyfriend for me please.

Nov 13, 2014 Arrow1 Down Reply
Mama

I loved from the fist with you. I can not tell you how much more now. Not write is difficult, but know you I want give your what most help.

Nov 15, 2014 Arrow1 Down Reply
Karen Kang

Ben, thank you for such an honest blog post. I sometimes struggle with wanting to quit my consulting business to spend all my time with Jon and the financial reality of being the sole breadwinner. But the worst part is not the financial stress but witnessing how ALS is robbing Jon of so many things that he loves (telling stories, playing sports and joking with others) I do try to live in the moment, with a pragmatic understanding of what lies ahead. Still there are dark nights when I give in to grief and worry. I think it is natural. Luckily, when morning breaks, I'm usually my cheerful self. Its an ebb and flow. You have a terrific partner in Jos. I'm sending good thoughts your way.

Nov 23, 2014 Arrow1 Down Reply
Sherri Terando

Know you are both loved and cared for, I cannot tell you how grateful I am for having crossed paths with you both. I am always here for you both in any way I can help.

much love to both of you.

Nov 23, 2014 Arrow1 Down Reply
Sherri Terando

Know you are both loved and cared for, I cannot tell you how grateful I am for having crossed paths with you both. I am always here for you both in any way I can help.

much love to both of you.