You Won’t Blow Me Down
I had the most aggravating and, quite frankly, humiliating experience I have ever had with MS this last week. I belong to an online forum where anything and everything is talked about. I am a frequent poster (sad to say…I have no life). But this took things way over the edge and really made me examine humanity in a new way.
There is a man on the forum who got upset with me for something I disagreed with him politically on. He claims to own a business that helps senior citizens find resources like nursing homes, home health care, and the like. Because he was upset with me, he posted in this forum of 13,000+ people that I was LYING about having multiple sclerosis! Yes…he said I was LYING! He stated he had my medical records because he could get them in his job, then backtracked when several people pointed out he was in violation of HIPPA laws by even discussing my health. I was outraged! I mean…really outraged! I was ready to go to the mats with this guy. Thank goodness I waited until I had cooled down to act.
So I began to think of all the things that multiple sclerosis has taken from me over the last five years. I used to be Supermom… able to chaperone a class party in a single bound, able to volunteer at the cheerleading fundraiser selling and delivering 500 dozen donuts in a single day (true story… long day). Now, I’m more like Slugmom…able to go the party, but not really participate. I could work a full day, pick up three kids and run the drop-off and pick-up at all after school events. I volunteered on my daughter’s little league softball team. I volunteered at the gym in exchange for my daughter’s gymnastics team lessons. I was at every sporting event, one act play, school dance, fall festival for fifteen years of my children’s academic careers.
Well that all came to a screeching halt when the Monster decided to move in on me. Now I realize that I had been having symptoms since my teens without knowing what was going on, but when MS decided it was time to jump on me, there was nothing I could do to stop it. I was literally bedridden for six weeks. Getting up and going across my bedroom to the bathroom was more than I could accomplish on my own. I fell so often that I ruptured L5/S1 and had to have surgery. My life became an endless stream of neurologists, family practice physicians, ophthalmologists, even an optometrist. I have endured lumbar punctures (which we all know are NOT fun), MRIs, blood draws, and have spent so much time on the floor that the dust bunnies and I are now intimately acquainted…but this guy wants to say that I am FAKING? Really?! Who would want to go through all of this for a lie?
I will say that I got my revenge. I simply made a records request to my neurologist and had one visit’s worth of notes sent. From that I made photos (redacting certain personal information) of the records and posted the photos of my name and my doctor’s name, as well as the diagnosis and treatment plan. It took the wind right out of his sails. But then I got to thinking, why should I have had to do that? Why would anyone want to lie about someone having such an illness?
Unfortunately, I know why. On the outside, I just look like a normal person. People cannot see inside my skin to know what is really going on with me. I smile through the pain and push myself…most of the time past the point of no return. I try not to let people see the pain I am in at any given moment. I laugh off my balance checks. I am careful to watch where I step so I don’t fall. I make jokes when I get tired and start slurring my words. I can fake my way through a conversation with someone I know I should know, but don’t remember her name. I am a stay-home wife and mother whose kids are all grown, so I sleep…a lot. The term “invisible disease” only means that, provided you aren’t in a wheelchair so people can see the disability, THEY can’t see it. But YOU still know it’s there.
It’s there when we wake in the mornings and have to take breaks from doing our hair because our arms just get too heavy. It is there at lunch when sleeping under a desk is a more preferable idea than going to lunch with the guys. It is there at night when we return home and cannot seem to muster the energy to do more than sink into a chair and order take-out. It is there…always. But it has taught me some things about myself that I didn’t know before.
Multiple sclerosis has taught me that I am not who I thought I was at all. I am stronger and more powerful than I ever believed myself to be. How else could I get through a day? If I was weak, I would have given up years ago. Instead, I found a fighter’s spirit inside my soul and I channel that warrior every single day. It is that spirit that gives me the strength to get up and make my family’s Thanksgiving and Christmas dinners even though I know it will cost me some days of doing nothing afterwards. It is that spirit that get’s me to the Friday night football games. It is that spirit that has me writing my story even now.
Multiple sclerosis has taught me not to take the little things for granted. I have two very beautiful granddaughters. One is almost two…and is a bundle of nonstop, wild, untamed energy. (Personally, I think she sucks the energy from adults when she gives them hugs and kisses, but that’s another story.) I never thought about how hanging out with her would make me feel so much better than I felt 10 minutes before she arrived. Yes, she wears me out, but I have a reason to be worn out! Did I mention she is a bundle of nonstop, wild, untamed energy? I enjoy those moments in life. They slip by so quickly, and the unpredictability of multiple sclerosis is such that I don’t know how many times I may get to crawl around on the floor with her and “eat” the “food” from her kitchen. I cherish these moments and the memories I am getting to make with her. I hope I get to make just as many memories with her little sister, too.
Lastly, multiple sclerosis has taught me to love myself for who I am, not for what I can do. I used to believe that my worth as a person was directly tied to what I could do for others. That simply isn’t true. I am a bright person with a loving heart. I have raised three wonderful daughters and am enjoying my role as a grandma…aka Chief Spoiler. My value isn’t in what I can do for my family, but rather in loving my family. And the coolest part of that is knowing that they love me in return. We aren’t always going to see eye to eye…nobody does, but when the chips are down…they are here.
So when someone does something stupid, like suggesting I would lie about having multiple sclerosis, instead of feeling rage at that person, I just feel pity. Pity that they have no more sense than to try and tear someone down who has already been torn down by the life she leads, but has rebuilt herself stronger than ever before. I’m a brick house now…you can huff and puff all you want to, but you won’t blow me down. After all…I’m #MSSTRONG!
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