Posted by: sistermom1 | May 22, 2012

My Learning Continues

We recently participated in a retreat with 4 other married couples. This is the second year we have been able to do it, and we really enjoy the activities and time spent with interesting and intelligent adults.  Thank you “S” for organizing this activity!   I continue to process the many things that I learned and observed about myself this weekend.

Because my husband has also had health challenges lately (a bout with sciatica), we almost did not go, but one of our good friends talked me into it by reminding me how much we both needed to rest without the demands of family schedules and how much fun it could be for us. (Thanks “M”!)

It was different being without the kids and with my husband and other grown folks.  Through this experience I was reminded that each of our lives is so very different — no matter how it may look from the outside, everyone has different pressures.  My illness does present our family with many challenges, but so do the situations faced by others.  My husband’s injury really affected the entire family since we all depend upon him to get things done.  It has been a real wake-up call for all of us, and we continue to adjust.  (His health is improving with P/T!)

With the kids taken care of, we left and had a great ride to the retreat together — time to talk without being pressured with family demands and schedules.  As we made our way to the retreat, my husband really needed to take his time and drive slowly (very different than on our past road trips).  I had to manage my own expectations — we had to do things very differently than we usually do.  It made me think about how my own illness has forced us to change how we do nearly everything.  For example, with my MS, I do need to go much slower than before, but nobody has ever complained about it (at least not to me!).  This makes me appreciate my family more deeply.

We arrived later than we originally planned, but we did get there and it was a lovely place.  My husband was not able to play golf with the guys, (remember his sciatica) but he  was very happy to be there – and be with me away from home.  It felt very different than our previous rhythm of getting places quickly and enjoying separate activities. (Him golfing and me at the spa.)

It also felt very different for me being out of the loop of planning and activities.  I used to play the role of coordinator/meeting planner most times we did things with our friends.  (We have a great person in our group who is a stellar meeting planner — I am not talking about this role, but the much more informal role that many people end up playing within their group of friends.)  Although my friends have rallied around, my not being able to be at the center of things — primarily because I don’t have the energy and I am not physically able to do as much —  my own issues that continue to rise up and smack me in the face) has made me feel less than and left behind.  (Emphasis on the word “feel” – this is all about me here!)  This was something I had not realized.  I do need to change that feeling and replace it with another more productive one.  (I continue to work on this.)

Dinner was delicious and we had a great evening.  Wonderful conversation about timely and stimulating topics.  Great laughter, and lots of good wine.  The group went back to our organizer’s room and stayed up talking and drinking until 3AM.  My husband and I did not join them — we were tired from our drive, and our room was an accessible room on the first floor of a different building.  No elevators, only stairs.  A bit awkward, but again, this is my issue to navigate and was no one’s fault…

We went on to bed — the rest of the group stayed up talking and had a great time.  This was a very different experience for me.  I am usually able to put myself in the center of things – really being involved in all of the details.  In the past, I did get much joy out of this — it made me feel important and useful, and it was a lot of fun.  I had come to define much about myself through fulfilling this role — not being able to do this has been a real game changer for me.  I mean, who was I now if I could not contribute in that way?  What did I actually bring to the table now if I did not do the things that I used to do?  Yes, there are other very capable friends doing this role — and doing it very well I might add — but what value did I bring if I could not help in the way I was used to helping?

This resurfaced several times over the weekend, although we did have a great time and the spa was wonderful (more on that in another entry!)   I found myself really questioning everything about myself.  I observed my behavior in  conversations with the group — struggling to contribute to every conversation like I did before MS came into my life.  I had a lot to say, but at times the discussion moved too quickly for me to follow (another side effect of the MS drugs for me — mental challenges can be difficult), and I felt disheartened.  A very new experience for me.

I shared this with my husband and for the first time I was able to put it into words.  To be honest, for most of my life I have felt the need to prove that I deserved to be in the room and included.  My MS journey has pushed these feelings to the forefront.  I often end up feeling like I am not bringing much to the table — since I am currently not working and am not able to do as much coordinating of our social activities, what exactly am I contributing?  In the past, I got much satisfaction out of doing, planning, and coordinating things for our family and many of our friends.  Since I am not able to do any of those things that I used to do, how do I make a difference in the world now?

As we talked, my husband reminded me that I am enough exactly how I am.  That I do bring a lot to the table, and what value I bring just as I am.  He reassured me about how smart, special and fun I am and that my illness has not changed any of that.  I just need to get out of my own head and remember that regardless of the wheelchair, my physical weakness or even mental challenges, I am fine just the way I am and each day I am moving forward on my journey learning exactly what I need to learn.

It did make me feel special — having a wonderful husband who knew exactly what I needed to hear on this very enjoyable weekend.  And having great friends who do much more than bridge the gap between my old life and new one.  So the journey continues for me.  I have been reading much encouragement written by Daisaku Ikeda about the role that illness can play in our lives.  I recently read the following:

“…illness has been a turning point in countless members’ practice, serving as an opportunity for them  to deepen their faith, transform their karma and win in life through waging an active battle against their ailment.  And this is true not just of illness.  I’m sure all of us, to a lesser or greater degree, have experiences where we were able to turn a problem or source of suffering into a springboard for transforming our karma and overcome it through our Buddhist practice.”

and later;

“Through faith in Nichiren Buddhism, we can apprehend the deeper significance of all of life’s sufferings, including illness…It is not a matter of just stoically enduring our karma; nor is it a path of escapism or passive resignation.  Rather we strive to build an invincible self through transforming our lives on the most fundamental level and developing inner fortitude, so that we can face illness or any other adversity without being defeated.”

I am keeping this quote close to inspire and guide me through this latest stage of my journey.  I remain determined to use this experience as a means to develop my life and become an even stronger and better example of someone who is winning in every stage of their life – with or without MS!

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