Exert from my Book,
“Walk With Me My MS Journey” © 2010
Several years have all but flown by. I find myself now not only a mother of four grown kids with their own families, but a grandmother, great aunt and 15 years older than I was the day of my diagnosis. Not much has changed except my determination to keep fighting harder to not let my health kick my ass for one more year. Some days I feel like I can conquer the world and on the other days, I am not quite sure who is winning the battle. You think with all the millions donated to research, that they would find a cure, but of course, when the majority of donations for research paying everything else but actual resolutions, solutions and results, why would we expect anything different?
Some days when I wander (or crawl, since my tele-port device broke) downstairs to do something, I get to the bottom of the stairs, and scratch my head in utter confusion. I wonder, did I go down there to put laundry in the washer or to take clothes out of the dryer? So I sit at the bottom of the stairs and contemplate… am I losing my mind? Then it hits me, I was doing neither. I call those moments, “brain farts”, because I truly think my brain has sunk down to the lower end of my body. Why not, some people I have conversations with when fighting for the legalization of alternate treatments for Multiple Sclerosis, I feel as if I am talking out my ass anyway.
I try to keep busy, even though medically working full time outside of my home is almost impossible. I spend the majority of my time doing miscellaneous odd jobs computer related or working as a volunteer with activist groups through their websites and through social networking sites.
I have learned over the years, there are multitudes of actions that need taking and many means online to get involved in doing some good within the community and across the globe. All it takes is someone willing to research, type, and speak with a voice using their keyboard. I have plenty of time on my hands to do that, since I can on some days not do much more than that.
I find the hardest thing to do is get people to understand me, understand what life is like in my shoes. Granted I try my best not to whine, and just be downright bitchy about what life has handed me, but more aggravating is listening to people complain about the smallest thing ailing them that will go away or can be treated, when I carry a disease for which there is no cure.
The alleged remedy causes side effects that have a risk greater than I am willing to sacrifice, and in past experience almost killed me anyway. I just want to stand on a fence somewhere and scream into a bullhorn and tell them “Shut the hell up, get over it, and spend a week in my shoes, I would gladly trade you places”. Then I think to myself, that’s selfish. There are plenty of people out there much worse off. I just haven’t met any of them lately.
I think it the limitations and unpredictability of how my days will be, are what is the most frustrating. Battling depression as a result of the limitations happens on occasion. Those days I try to keep busy doing some small task around the house or read a book, to pass the time and remind myself, at least I have eyes to read, and I woke up that morning, so I am blessed. But it doesn’t mean that always works. I am human after all, and I have my weaknesses as does anyone else. It is how I handle those days that matter.
Some say music is a window to the soul and that it touches us in many ways. I find that to be true. I know on a long day when I feel like I need a break from reality and things around me, I can close my eyes and listen to some relaxing sounds of seasons and outdoors and pretend in my mind I am miles away. On other days when I can’t really think of what I am feeling, I can turn to music and find a song that reflects the emotions I have, but can’t find the words to express, and they bring comfort. I guess you could say, I have created my own coping mechanisms in life.
On the days when I feel like I have reached my limit, I have actually caught myself imagining my funeral and what song would I want people to play to remember me by. I think I would choose “POP-GOES-THE-WEASEL” so everyone could stare at my casket and wait for me to jump out and scare the hell out of them. I think that would be an awesome way to get the last laugh!
Me thinking about my funeral may seem pretty depressing, but to me it isn’t. It is called facing reality unafraid and without regrets. Every day I live, I count my blessings and know that every breath is a gift from God, every day is a treasure all its own holding a new memory and possibly a new experience. That thought keeps me going. So the bottom of the curb looking up doesn’t seem too bad when you consider I at least have eyes to see it and climb my way up out of there.
©Copyright protected 2015: NWU Local 1981
©IAPP Author/Journalist Press ID # 1007490467