Rosalind Kalb, Ph.D., Clinical Psychologist, Vice President of the Professional Resource Center of the National MS Society and a member of our Can Do Multiple Sclerosis Program Staff has coined the phrase “MS Free Zone.” What she is referring to are areas of your life where MS can’t touch you. Can Do MS and the National MS Socitey are collaborating on a series of teleconference courses called Jumpstart Your Relationship: Reclaim your Well-Being for couples. In one of our recent classes, we asked the group to come up with their MS Free Zones. While some found this to be easy for them, some others struggled.
Living with MS provides its challenges. It is possible, however, to reach beyond MS to find one or several areas where you can go, find emotional energy, and see beyond the challenges of MS. People and support partners have said that they find this a difficult task. “If I could only walk….”, “If I could still run a marathon…”, “ if I could still put on a dinner party” “or if we could still camp as a family”, “If we could still travel”. Finding that Zone is not a simple task. It is actually an adaptation and sometimes takes work to find what is most successful just like other adaptations do.
Some people find the Zone in their head. They are able to escape to a pleasurable thought or memory. Others read, listen to music, pray, get out of the house to take a drive to someplace new or familiar. Exercise is another great way to level the playing field against those challenges. Swimming is a great way to de-stress and tone up at the same time. Better yet, join a swimming class and play with the group. Some couples choose a time in the day when energy levels and demands are optimal and spend it together; cuddling, holding hands, dreaming, sharing. Some couples use intimacy and sex as their MS free zone. It is OK to have your own MS free Zone or to share your zone with someone else.
When everything you do seems difficult, it is hard to think beyond that. “I spend all my day just doing the necessary things to exist so I have no time to do something that is frivolous” a patient told me recently. While part of that is true for him, with good planning, space can be made. In his case, we enlisted the help of an occupational therapist to help him sort out his tasks and make suggestions on how to make some easier and how to eliminate some altogether. Because of those efforts and because of some efforts he made on his own, he has joined a coffee club that meets weekly in his town. He takes transit to get there and then spends the morning with his friends. He tells me he never once thinks of his MS while he is there.
It’s all about what makes you happy and what gets you away from MS. MS doesn’t have all of you. It’s up to you to find out what those areas are that bring you joy, respite and freedom. It’s a task worth working on. It will pay off for you when you find “that thing” and will allow you to be more than your MS.
Multiple Sclerosis: The Questions You Have; The Answers You Need, 3rd edition, Rosalind Kalb, Demos Medical Publishing
Multiple Sclerosis for Dummies, Rosalind Kalb, PhD, Nancy Holland, EdD, RN, MSCN and Barbara Geisser, MD
Speedbumps: Flooring it Through Hollywood, Teri Garr, Hudson Street Press