I wrote my first article about my wife who suffers from Freidreich’s Ataxia, a form of muscular dystrophy. (http://healthmad.com/conditions-and-diseases/living-with-a-young-disabled-wife/). She often does not want to go places with me because of logistics. I try to encourage her to come places with me.

It is certainly understandable that Julie is hesitant to go places when she does not have to. She is safe and secure in the house. For the most part, she can confidently maneuver around the house without needing “Wally”, the walker or me holding her hand. Julie is in control for the most part in the house; she can be independent there. However, she needs to get out of the house for her own good and because I want to be with her.

There are times and places where we do not want to or cannot be together. Of course, she cannot come with me when I am doing my training walk-runs for marathons. There are times when I want to be alone or with my guy friends. But I am not talking about those in this article. I want her to spend more time out of the house, with me and without me.

With Julie’s disease, she cannot walk well as stated. However, she can do water aerobics at her gym in the pool. I encourage her to go as long as she is not having a really bad day, e.g. really bad muscle aches or a bad headache. In the same trip, I want her to go to our chiropractor. The adjustment that she receives there naturally makes her feel better.

In addition, there are places that we can go and things we can do together. I really want her to come with me. Last year, during the political season, there was a Fair Tax rally about two hours from where we live. I talked her into coming with me. Logistically, it was difficult. However, we got through it. I was glad that she came with me. I had a much better time at the rally than I would have without her. Since there would be more walking than Julie could have handled, we used a wheelchair. People at the rally were very courteous. When we went to the place where Mike Huckabee was giving a speech, we got a front row seat so she could see good.

Tonight is a good example. I am a member of my local Kiwanis and the banquet is tonight where I will become the President-elect of the group. I did not even try to talk her into coming with me because I thought she would not be interested. However, she expressed interest in coming; I was glad and surprised. She asked me if I wanted her there. OF COURSE, was my answer. She was worried about what dress to wear. I said not to worry about that too much. Pick one and be there with me. I simply will enjoy the night a lot better with her. We will sit at the head table; I will stay with her and people who want to talk to us can come up and talk to us at the dead table. This is no big deal.

I want Julie to come to church with me. My faith is very important to me and Sunday Mass is a cannot miss. It is not good that the church I go to is a full hour away. Therefore, the Sunday church outing is over three hours, almost four every Sunday. I am away from her enough during the week at work. I want her to come to church with me because of faith, of course. Also, I want her there with me simply to be with me. If she comes to church with me, we can enjoy a Sunday drive in the country just like many people used to do before $4 a gallon gas prices.

Finally, it is good for Julie to get out of the house for her own sanity. I have a friend from law school named Andy. He had a phrase which makes perfect sense, “the evil house.” Simply, your house gets evil if you spend too much time there. “The walls are closing in.” Julie often talks about the “evil house”; she feels the same way that Andy did in law school when she spends too much time in it. If Julie got out of the house more, the house would be less evil.

So, Julie, please come out of the house and be with me! We spent too much time away from each other while I was in law school.

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Comments (5)
  • chitragopi on Oct 8, 2009

    Yes, getting away from the house now and then refreshes the mind and body. Nice article.

  • raman13 on Oct 8, 2009

    excellent

  • ryan on Oct 8, 2009

    wow, pretty moving! it was great seeing her with you last night. we enjoyed her company. R

  • William H. Sloan on Oct 8, 2009

    Thank you Ryan and all. Julie did go and she had a great time!

  • Tammy on Oct 11, 2009

    Jack,
    Nice story!! My husand Tim has FA also. He is now in a wheelchair. It takes some powers of persuasion to get him out of the house also. We has two children, one in high school and another in elementary. Our daughter is playing HS soccer and it has taken me lots of nagging to get him out to watch her play. He did surprise me and go to a football game to watch her march in the band.

    Keep encrouaging her to get out. I will tell you this the more she does the slower the progression. Tim has shown symptoms of FA for 20 years but I consistantly push him to keep going. You can do the same!!!

    Thanks for sharing your story!!

    Tammy

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