''Approaching Valentine's Day"

"Approaching Valentine's Day"

This is not going to be an easy blog post to write and especially to share on my site. It's not going to make me look very nice and involve some personal apologizing made public. But it's enough of a side effect of the ALS journey to let others in on its presence in my life. It's probably not unique to those battling ALS. People with other troubles probably are guilty/succumb to this negative behavior as well.

Those who know Dorothy, my wife, and me know we've a pretty awesome relationship and marriage. We've enjoyed our life together and like one another as well as love one another. Now, that doesn't mean things have always been perfect - that we haven't had our moments of disagreement and times when we've been upset with one another. We've at times been living proof of the cliche about hurting the ones you love the most. We wholeheartedly affirm the adage that "good marriages don't just happen - they take work, lots of work!" But, we've had a good marriage. We love and respect one another immensely!

Well, two of the strengths of our marriage have been communication and role sharing. We committed ourselves to sharing what was going on inside us - what we were thinking as well as feeling. We didn't want a marriage where we only shared physical space. We both were involved in the caring for and raising of our children, the duties around the home, the pursuing of careers and the understanding that all resources - financial, skills, personalities, decisions - were ours, not mine and yours. Perfectly divided down the middle? 50/50? No, we changed who was responsible for different things on occasion and I definitely didn't do much cooking and neither one of us did many home or car repairs.

So, things have changed as the effect of ALS on my body has had its way with my muscles. I've had to give up doing things for myself - no more sharing of responsibilities. I have had to succumb to being helped. I've never accepted the help of others very well. But ALS doesn't give me a choice. Making the effort isn't even possible anymore.

Here's what's bothering me even more though: even though Dorothy is doing a super job trying to meet my every need/want, she's not always successful and as a result I don't always let her know how much I appreciate her effort caring for me. Instead, her efforts are too often met with a shortness of speech which sounds very much like disgust or anger on my part. I hate it when that's what comes out of me! Sometimes it's because she doesn't do something the way I think or want it done (imagine that!) - sometimes it's because I'm getting harder to understand and she has to inform me she didn't. Repeating myself is hard/frustrating/discouraging.

I guess I just want others to know that I am aware of my misbehavior and for you to understand another unwanted and unsolicited aspect of this cruel disease. I'm not seeking sympathy with this confession for myself as much as I am for my unbelievable Valentine, Dorothy! Really, honey, (and family and friends) this is not the way I want to be remembered. I'll keep trying to control it and ask for you to continue your awesome patience, care, and love.

Happy Valentine's Day, Dorothy! Happy Valentine's Day to all of you!