Posted by: sistermom1 | April 19, 2011

Two Couples Retreats

My husband and I have participated in two couples retreats in the past month.  This is an unusual occurence for us, and I truly appreciate his willingness to attend both of these things, which would not be in his normal range of options for his daily life.  After all, he is a typical male, who is very private and not eager to share much with other people — especially things related to our life together.

In March, we attended a weekend sponsored by the local chapter of the MS Society.   This session was really eye-opening.  I learned much more about how my husband is dealing with the reality of my illness.  I also learned about a variety of resources to assist in travel planning for people with disabilities, how MS impacts my mood and cognitive functioning, how to communicate more effectively with my husband, how sexual activities are impacted by MS, and how we can connect better as a couple.

This past weekend we spent with several good friends (all couples). It was an amazing time which left me with many feelings about our life together, and the lessons that I continue to have.

This weekend was absolutely wonderful.  Between lovely accommodations, great food, relaxing spa treatments and 18 holes of golf, everyone had a great time and enjoyed it tremendously.  Even with terrible weather on Saturday, we did not want to leave, but we had to return home on Sunday.

On the way home in the car, we discussed many of the things that we don’t often have the time to talk about every day.  The most loaded question I ever ask him is the dreaded “How are you doing?” question.  I dared to ask him that on our way home this weekend, and the answer he gave me was layered, meaningful, and frankly a surprising joy.

First, he said that he was “Fine”.  This is what he usually says, and it always frustrates me because I feel like it is such an incomplete answer, given what we deal with on a daily basis.  This time though he kept the conversation going and I was really encouraged by what he shared.

He talked about the fact that he does think a lot about how we can live a good life.  How life is every day for us together with our kids and how we are teaching them to live and enjoy their lives as well as the importance of doing positive things is something he spends time thinking about — along with how our family can support me in my health challenges.

He talked about how fortunate we are to have solid friends of good character — to have such great  friends of good quality who love, understand and support us is a wonderful gift that he does not take for granted.  And neither do I.

As we kept the conversation going, I shared how I worry about how my illness impacts our friendships.  He chuckled and reminded me that I should be comfortable and happy with the fact that I am who I am.  My disability should not determine how I interact with people at any given moment, and I should not let it determine how I behave in a group.  I still am the same person I have always been in our group regardless of the impact of my illness on us, and our friends truly respect what I bring to the table.

It is important to have the wisdom to know what and how much to share with others about my life at any given moment.  With MS  there are things we can and cannot do — for us to be ok with what is and to do what we can and be wise about the things that we do decide to do.  For me not to feel guilty about what is difficult for me to do, and to stop apologizing for being who I am right now and needing what I need right now to be comfortable and happy.  It is fine for me to need whatever I do need (scooter, disabled accommodations, valet parking, whatever) and I should not apologize for it (which I often do – often without realizing it).

Our life together is good — even great.  He appreciates what we do have  — great friends, a lovely home, two wonderful and positive children who are great to be around, wonderful relations with most of our families of origin (I already wrote about the strains of my relationship with one of my siblings — that is still a work in progress).  Although it is different than we planned, it is quite good.

There are many lessons for us in this leg of our journey together.  I feel so fortunate to have this wonderful man in my life — and the amazing group of friends that we do have in our lives and the lives of our children.  This lesson reminds me of the writings of Daisaku Ikeda about illness:

llness is not something to feel ashamed of. It is not a sign of misfortune or defeat. Suffering is the fuel of wisdom, and it opens the way to happiness. Through illness, human beings can gain insight into the meaning of life, understand its value and dignity, and strive to lead more fulfilling lives.

Here’s to leading a more fulfilling life….



  1. Sister Girl, you are my hero. You truly inspire when and I am a fan of your determined spirit to fight, make a difference in the lives of your friends, rear responsible children and give unconditional love to your spouse and accept that kind of love also. You are blessd beyond measure and a superstar friend. (just ask those that know you and they will agree. You have a heart of gold with immeasurable wisdom from our Creator. No matter what MS has done to your body it hasn’t taken anything from your keen intellect. As such you are still my favorite MS cover girl. You rock!!!!!!

  2. Linda,
    Great breakthrough communication for your husband. My hat’s off to him for being open to taking it deeper, reaching down inside and sharing from his heart. you are right, for most men that is really not easy at all. And you are doing a great job making it possible for him to reach openness with you. That isn’t easy either.
    Thanks for blogging.

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