My MS story begins in 2004 when I was a 48-year old single mother and had been at my job facilitating scientific peer review for four years. I was proud of the stability and continuity I could provide for my daughters. My office was close to home and the work was ideal for me, combining my interests and skills. I had experienced a lot of ups and downs since 1995 when I separated from my husband and needed to rejoin the workforce, but for now life was good.
When the Multiple Sclerosis Research Program (MSRP) began in 2009, I had already been diagnosed with MS. I had been facilitating peer review meetings and delivering scientists’ findings for Congressionally Directed Medical Research Programs supporting the US Army’s Medical and Materiel Command since 1998. While my professional and family life was working for me, I was dealing with lack of stamina, overwhelming fatigue at night, bladder issues, and poor balance. Since 1999 I had been trying to find out what was wrong with me. When I was finally diagnosed with MS, I was not pleased. I had been seen by various specialists, including a urologist, rheumatologist, infectious disease specialist, two neurologists, and I did not want to learn that I had MS, especially since there is no cure. For me, it took many MRIs and a third neurologist who ordered a lumbar puncture to learn that the source of my difficulties was MS.
With the diagnosis, I did not know how my life would change. Unfortunately, with MS there is a great deal of uncertainty to manage. That is a cruel aspect of the disease. I am dealing better now with the moving target that is MS, but I have learned through trial-and-error, to pay close attention to my ever-changing limitations and take better care of myself. For instance, regular exercise is not particularly rewarding for those of us with MS, but it is absolutely essential. Along with proper diet, rest, and staying generally healthy, exercise will slow progression of the disease, or perhaps even improve my ability to keep moving. I attend PT twice a week and am conscientious about practicing exercises at home. My physical therapist is a very important member of my team; with her help I plan ahead for circumstances and environments I need to navigate and continually work on balance, strength, and mindfulness, so I can avoid falling.
Besides changing me physically, having MS has altered my relationships with family and friends. Important relationships have deepened and are more precious than they used to be. Connections with my daughters, their partners, my longtime companion, and true friends, provide meaning and direction. Often when acquaintances or strangers go out of their way to show kindness, it confirms my belief that most people are good; however, it also makes me uncomfortable and sometimes I wish that I was invisible when my difficulties are conspicuous.
Not being employed has been a huge change. In 2014 I was laid off after 16 years at my job. I wanted to return to work, but having MS presented challenges for my job search. Several places I visited or looked into had daily commutes that would be too stressful––commuter buses or hour-long drives. Later I concentrated exclusively on part time positions and ones where I could work from home. I had two experiences where I suspected discrimination, although there is no way to prove it. In any event, after a year and a half, I stopped actively looking for employment and now concentrate on volunteering and taking care of myself.
There is a lot to like about retirement, even if it happened before I was ready. I receive Social Security Disability Insurance (SSDI) and I’m glad that I started my application for SSDI within days of being laid off since it is a lengthy process. Now I am free to devote as much time as I need to prioritize people and issues that had to be put aside when I was working, such as occasionally cooking for a nearby hypothermia shelter and fulfilling my role as fiduciary guardian for my sister. I am vastly better informed than I used to be about numerous topics, such as history and current events thanks to listening to podcasts while I exercise. Importantly, I found that slowing down has given me insight that I didn’t have before and I am better prepared to express myself in writing and in discussions.
Whereas before I sought to downplay my MS and would only sporadically attend monthly MS meetings in my area, I now embrace my role as an MS advocate and co-lead my local support group, which is sponsored by the NMSS. Along with the NMSS, the Multiple Sclerosis Foundation, Good RX, and hundreds of other national and local organizations provide assistance paying for drugs and services. I get a great deal of help from these organizations and derive a lot of satisfaction from my engagement with the MS community—making people aware of programs and services, and occasionally collaborating on applications for assistance. In other words, I have found communities other than work colleagues who keep my life busy and productive.
Everyone at my MS Support group is unique, presenting with different symptoms, situations, and frustrations. I have learned a lot from my group about equipment and services. I’ve also seen brave and dignified individuals as they grapple with their challenges. The MS community is vast: patients, clinicians, caregivers, foundations, volunteers, physical therapists, MSRP, etc. Before a cure is found we need to push forward with research for innovative treatments and continue supporting programs that disrupt isolation and despair. Efforts to change the course of the disease are somewhat effective, but as with all patients with a chronic disease, I hope there will be more and better interventions for MS sooner rather than later. CDMRP is helping to drive this innovation.
I am grateful to the National Multiple Sclerosis Society (NMSS) who nominated me and to the Multiple Sclerosis Research Program (MSRP) for including me as a Consumer Reviewer. Participating in the peer review meeting and having a chance to evaluate the scientific proposals in terms of impact has been extremely rewarding.
Last updated Tuesday, March 3, 2020