Debra C.

While in her master’s program, Debra felt half of her face go numb. Her doctors thought she might have  Bell’s Palsy and the numbness in her face eventually went away. Another time, Debra experienced numbness that moved up from her toes to her waist. A doctor diagnosed Debra with relapse-remitting MS while she was in the hospital recovering from a back surgery for pain from what she thought was from a bulging disk in her back. Debra remembers “I was like, OK, can you fix this? Am I going to die?”; she was afraid of ending up “curled up in a wheelchair.” Debra has “always been brutally honest” about her MS and told her family and clients she was working with as a substance abuse counselor about her diagnosis. Some members of her family thought she was making up the pain she was having because she “looked fine on the outside.”  

Over the past 10 years, Debra has had shots and taken pills for her MS. To make decisions about her treatments, Debra tries “to get a consensus” by asking her providers for their opinions. She now is on an infusion medication. Debra hates the days she has to go in for her infusion because she has to drink lots of water beforehand and has trouble holding her urine; she feels “dehumanized” having to ask for help changing her clothes multiple times. For Debra, there are times like this when MS “smacks you right there in the face of, oh yeah, by the way, you're not normal anymore.” She is really bothered by the memory symptoms she experiences which make it hard for her to remember what people did or told her in the past; Debra is unsure whether her memory issues are from her MS or the two brain aneurysms she had. Shortly after Debra’s husband died suddenly, her doctor encouraged her to stop working because of her worsening MS symptoms. The loss of her husband, income, newly opened private counseling practice, and house left Debra feeling “less than a person all the way around”, “forced into this life of instability.” 

Debra’s MS symptoms sometimes “act up” leaving her with more stiffness and unsteadiness that make it hard for her to walk distances. She experiences pain in her lower back and hips and uses a walker. Stairs, “standing long enough to cook food,” showering, and going places are difficult; Debra doesn’t leave the house unless someone goes with her. Debra’s partner, her “first love in high school,” comes on the weekends to help cook food Debra can eat during the week. Debra doesn’t like to go to social events because in places with groups of people she “would need more help to be safe” and she doesn’t “like to be waited on.” Her biggest worry is she will have to be “taken care of 100% of the time.” 

Some days MS can “consume into depression” for Debra. She tries to be aware of how she is feeling and do activities to get “out of that funk.” Debra is close with her daughter and her dogs are a big part of her life, keeping her company while she’s home all day by herself.  Participating in support groups has enabled Debra to be around “people that completely understand” but are also “normal people” who “all have a new normal now” living with MS.  Debra’s advice for others with MS is to “try not to let that define your whole life”, keeping sight of “the good things that you do have that are constant in your life.”