Thursday, April 20, 2017


I recently wrote to a friend:
The awfulness of having ALS is obvious and apparent. The blessings are a little harder to reveal.

Blessings? ALS? How could I ever see blessings in a disease that is slowly taking me away from everything and all that I love?! Have I lost my mind?! (That is rhetorical) I guess the disease itself is not a blessing, but the awareness it has brought to my life most definitely is. What I told my dear friend is I am aware of how people feel about me and I tell people how I feel about them with a open heart. How lucky am I to be able to hold nothing back! If I feel love, I express love.

I laugh more. I used to laugh because I have always been surrounded by funny people who do and say funny things. But now I laugh with wild abandon - at the silliest things. Some things throw me into fits of laughter that last way beyond what is deemed appropriate, but I don't care. I laugh, and laugh, and laugh and my laughter makes other people laugh.

I cry more. Could this really be a blesssing? I think it is. It is a true expression of my feelings at that moment, and what could be wrong with that. Crying is also very cathartic and cleansing and I always find myself feeling more focused and at peace after a good cry.

I have seen compassion in my children that I would never have seen. I am not saying compassion wasn't already there, but having a mother who can no longer "do" has brought out something unique and almost spiritual in my children.

My relationship with Adam has been challenged and continues to be challenged but we continue to overcome. I love him with more sincerity and passion than I ever have. We find humor in the everyday and often in things that most would not find humorous. We are living our lives as partners, husband and wife, best of friends, and try to make the most of every day.

I have learned to slow down and "stop and smell the roses". Really out of necessity because I am slower than a sloth. I see more, smell more, notice more than I ever have. I do not allow those things that irritate me take up space in my life.

My parents and I have had the opportunity to spend time together that maybe we wouldn't have had. I enjoy their company, appreciate their help, and am learning to let go of the guilt I feel that they aren't able to take advantage of their retirement as originally planned.

I am writing. I haven't written this much since the seventh grade, when my writing journal was filled with bad poems of teenage angst. I am sure that the writing has come purely from illness and time and my unconditional need to connect to others.

I feel like my friendships are stronger. I have made many new relationships with a whole variety of people that I would never had met. Through in-person and on-line support groups, through our village in Lawrenceville and Robbinsville, and through this blog. Each one of these relationships is a blessing and has grown to be important and valued in a way that is difficult for me to describe and understand.

I will be perfectly honest and perhaps a little brash - if I had the opportunity to trade all of these blessings for a life without ALS, I would in a heartbeat. However that is not a choice I have. So I'll take these blessings and live my life to the fullest.

Live to love. Love to live.

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