Advice from the Trenches
Sandra Lesher Stuban is an RN who was a 38-year old Lieutenant Colonel in the Army when she was diagnosed with ALS. She's the author of "The Butcher's Daughter: The Story of an Army Nurse with ALS," in which she describes her journey openly and honestly. Although she is completely paralyzed and uses a ventilator, she lives an active life as a writer and nursing leader.
Q: Do you have any suggestions about how to enjoy the holidays? I find myself sad that I cannot do things the way I used to and feel a little overwhelmed, but I want to do all I can to enjoy my family and friends and to help them have a good time, too.
A: With the holidays fast approaching, it's a time for family get-togethers, giving thanks and sharing fun times. But with ALS intruding in our life and lifestyle, it's easy to fall into a mindset of believing that this year will never be the same as last year which leads to disappointment and unfulfilled expectations. It's necessary to change this way of thinking from being consumed with the negative to taking a more positive approach. Here are several things to consider and think about as the holidays draw near.
- First, you should acknowledge, accept and adapt to the fact that the holiday will be different. But know that celebrating a holiday in a different way is not necessarily a negative experience; it can be very satisfying, if you approach it with the right attitude.
- Speaking of attitude, ALS may take our strength and movement, but it can never take our approach to things. The way we deal with our limitations and obstacles is unique to each of us. Personally I refuse to allow ALS to define who I am.
- As you prepare for the holidays, incorporate your new lifestyle in a meaningful way into new traditions. That means figuring out how you will transition from your physical role during the holidays to one that involves more planning, coordinating and delegating. For example, you can plan the menu, invite the guests, share recipes, assign food to bring, delegate duties, make someone in charge of games and activities, and much more. There is really no need for you to be physically in the thick of the bustle, your presence is felt in everything everywhere because of your planning.