Meet MSAA’s Newest Guest Blogger – Lisa Scroggins

I am Lisa Scroggins, wife, mother, CPA. I was diagnosed in 1991, and my mother had MS. There’s more: two of my five siblings also have MS. So, obviously, I am a person with MS: a patient. I don’t like to be called an MSer. I also resist substituting different words for the letters, M and S, such as “Made Strong:” I like to think of myself as an advocate, and I have written to members of Congress on various issues. I’m currently in the process of trying to correct an inadequate parking situation in my community¹.

If I’m brutally honest with myself, I just don’t like being a disabled person, and I have hope that I can improve. Having officially stopped working because of disability, I am having an identity crisis, as well as an existential one. I know I have pretty severe limitations, which mostly have arisen in the past three to four years. There’s my first clue: it seems as though it’s very recent, but I just typed the truth: my walking ability has worsened over several years, not the one or two that I’ve been telling myself. It has been only a couple of years since I’ve worked, but it’s important to know that I experienced a life-changing series of events which have left me reeling to this day. In other words, it’s complicated.

I’ve had MS for a very long time. I’m lucky, in that for many years, my symptoms were invisible to others. Although they were always in the back of my mind, I had learned to compensate for them.

First example: I’m shopping in a Sam’s Club store. It’s a huge building, and as is typical, I’ve walked around for a while, just browsing for things that I might want to buy, when I realize that fatigue² is kicking in. I’m not prepared to check out, with all that entails: getting my payment and membership cards out, unloading my items to the conveyor belt, putting them back in my cart, storing my cards safely, but keeping my receipt ready to be checked before exiting, trekking to my car, unloading my purchases into my trunk, parking or maybe just abandoning my cart, climbing back into my car where I will rest for a few minutes, while hoping that no one is idling behind me, waiting for my parking spot—oh the pressure! Also, I’m a pretty good distance from the checkout lines, and those lines were fairly long at last glimpse. What to do? I head over to the book section. I park my cart so that hopefully, it won’t impede any other shoppers, grab a few books to peruse, and sit down on the floor to rest and look through the books. Occasionally, I get some questioning looks, but hey, you do what you have to do.

Second example: I have what’s known as a “neurogenic bladder.” Real world translation: I experience urgency, which means I have to pee now! It doesn’t matter when I’ve last relieved myself, or how much my fluid intake has been. (That commercial for an overactive bladder medication is spot-on and even cute! The bladder IS in charge and drags me where it will.) Whenever I enter a building, if I don’t already know where the bathrooms are, I focus on finding their locations. When driving, I have been known to pull over to the side of the Interstate when I couldn’t make it to the nearest restroom. The technique involves putting on my car’s flashers, exiting my car, rapidly walking over to the passenger side, opening both front and rear passenger doors to provide a modicum of privacy, grabbing a fast food napkin or two from the map storage compartment door on the front passenger side for, oh, come on, you know what it’s for (always kept stocked for emergencies such as these!), and doing the squat. There’s just no way to do this in a dignified manner. I always feel guilty for littering. The pre-MS me would never have done such a thing.

The nature of my MS has changed and its effect on me has been nothing short of dramatic. As isolating and terrifying as it is, I know there are thousands of other people going through the same thing. The need to redefine myself in this new state of existence, is a powerful one. In our culture, what we “do” defines us. I’ve been treading water for some time, trying to figure what it is that I “do” now. If it’s true that “necessity is the mother of invention,” I’m looking for some tools. Maybe we can search together.

¹ You may have thought, as I did, that the ADA fixed this stuff, but that is incorrect! An explanation in a future blog post is in the making
² Often cited as the most common and disabling symptom among people with MS.

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About MSAA

As a national nonprofit organization, the Multiple Sclerosis Association of America is a leading resource for the entire MS community, improving lives today through vital services and support. MSAA provides free programs and services, such as: a toll-free Helpline; award-winning publications including a magazine, The Motivator; website featuring educational videos and research updates; S.E.A.R.C.H.™ program to assist the MS community with learning about different treatment choices; a mobile phone app, My MS Manager™; a resource database, My MS Resource Locator; equipment distribution ranging from grab bars to wheelchairs; cooling accessories for heat-sensitive individuals; educational events and activities; MRI funding and insurance advocacy; and more. For additional information, please visit http://www.mymsaa.org or call (800) 532-7667.

Comments

  • Dan Jefferson says:

    First allow me to say that Lisa Scroggins is my niece. Even so she has taught and educated me on something I confess I knew next to nothing about. Multiple Sclerosis. My sister , Lisa’s mother had it and I was woefully ignorant of what it was for years. And as she stated two of her 5 siblings also have it. At the risk of sounding biased, and I confess I’m not trying to be , Lisa has amazed me with her grace ,poise , intelligence and insight. I believe she will be an exemplary contributor.

    Sincerely , Dan Jefferson

  • Vivian Swibel says:

    I’m pretty much where Lisa is. I’ve had the diagnosis of MS for 18 yrs. I left the workplace 14 months ago, which has put me in a place that I must come to grips with – my future. My family doesn’t understood where all of this has put me. I need an income that I can rely on. My money was spent on a son with emotional difficulties, who passed away 16 months ago. I don’t want to burden my daughter with my needs.

    So we know there are emotional roller coasters with MS. The short of it being – how to take care of yourself and not burden family with these issues. Where do you even start when you need to replan your life especially when you have no idea as to how your life will be 1, 2, 10 or 20 years from now?

    Blogs, ideas, support & resources are always needed…..Vivian

  • joey miller says:

    i understand. totally,for me it’s. my loved. ones not taking. MS seriously, they don’t understand. what a struggle it is just to get out of bed,the. depression an fatigue, lack of mobility, the pain,it’s a daily battle good luck to you

  • Kate says:

    Boy, I can relate! I have had MS for 35 yrs. My disease has become a monster I can’t work, drive, sleep, or be happy anymore. I tell myself I have been so fortunate for so long. The truth is “not long enough”. I miss me and I can’t do anything to change it. I am fearful about my tomorrow and all the tomorrow’s after. I hate me I hate it. How do I get out of it? Can anyone give me a clue.

  • Bobbi says:

    I sure can relate to Lisa. I was diagnosed with MS in 1977 and given no hope back then. Living with this Monster isn’t fun because it is so unpredictable. I have just celebrated my 75th birthday and consider myself lucky as I know a lot of others not as fortunate. I can still drive (not far, just to the grocery and church) and am ambulatory within limits. I wish I had a scooter but cannot afford one. Sleeping is another story. Also my dear husband passed away 2 years ago so I feel so alone now. I do have a step-daughter and daughter that live within 8 miles but they have their own lives and I hate to bother anyone. I want my life back that I used to have; to be able to do things and not get so fatigued and deal with the pain better! Then there is the oxygen problem; I was in the hospital last November and came home with oxygen 24/7. Grrr!!! HATE IT! I’m sorry, didn’t mean to ramble on. Best quit!

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