A young woman approaching middle age describes in detail just what life is like as she struggles with the demands of having a debilitating disease.
My name is M'Kaya Mnjama (Emmin jama is how you pronounce my last name; it's African), and I am 45 years old now. I just turned 45 back in September.
I am a native New Yorker; have spent all but one year in New York City. (The one year where I wasn't in New York City was after September 11, 2001, occurred; I got sick that night, and I spent months recuperating in a hospital and then a rehab center, where I had to learn to walk all over again; I had flesh-eating disease, and I lost one of my legs.) I used to work at the World Trade Center Towers (north tower), but since September 11 happened, I don't have a job any longer, and I have also had to cope with the deaths of 11 of my 13 co-workers (they all died in the attacks; the only ones who got out were myself and Wendie, a disabled co-worker, and our boss). The only reason why Wendie and myself weren't injured or killed in the attacks was because at the time she and I were on break. It was really a horrible time, and ever since, I don't sleep anymore. I have too many memories, and I have frequent nightmares.
But September 11, 2001, is NOT why I am writing this down. I am writing this for an entirely different reason. I am writing about having to live with multiple sclerosis, which is the name of the disease I have. I have had to live with MS for over 20 years, and every day is a challenge and a struggle for me. And some days are hell.
Multiple sclerosis, to give you a basic, brief description, is a chronic neurological disorder that affects the central nervous system, and depending on where it is, people with it can have varying degrees of symptoms and severity ofvarious types of symptoms. In my case, it affects my walking ability, and I often use a wheelchair or Lofstrand (forearm, or "Canadian") crutches. But since I have lost my leg over a year ago, I find it more convenient to use my wheelchair. It also affects my vision (at times I have trouble seeing, or I have trouble with double vision), which, in turn, throws off my balance, and then I am prone to falls. So I would rather use my wheelchair instead of the Lofstrand crutches. But I will use my Lofstrands if I am feeling strong enough. I also sometimes have trouble using my hands, and I sometimes feel very weak.
I was diagosed with MS when I was in my 20's after I started having problems with my balance and with weakness in my arms; and shortly after that, my vision started acting up on me. Now, at first, I was upset because MS can be progressive (in my case, it was; I have gotten worse over time), and it CAN be fatal if it is severe enough. But so far, 20 years later, I am still here, and I am still "kicking"! :)
There are days where I need help with simple tasks; but there are other days where I can (somewhat) get a handle on things and function fairly well. It comes in cycles, the MS, and at times it flares up and likes to make its presence known (as if I am not ALREADY aware of my disease!). Some people have it worse than others; no two people with MS are the same when it comes to symptoms. Now, eventually, I may require total care and/or I may be bedridden, but so far, by the Grace of God, I haven't reached that point: I am still walking (albeit with my Lofstrands) or using my wheelchair, and I can still do quite a lot of things for myself. I also can take care of my husband, Franklin, and of mama when we go to Tennessee to visit my mama. (She lives in Nashville. When I was sick with the flesh-eating bug, I was in Nashville at the time, and I was in Nashville for a year. During the time I was in Nashville, I was staying with mama after I got out of the hospital. And it was there where I met and fell in love with Franklin...but that's another story. (((SIGHHH))) )
To help ease some of the symptoms, I am on medications, and I use my crutches or my wheelchair, as I have already mentioned. I try to live as normal of a life as possible despite having MS, but it IS a challenge every step of the way! It is especially hard as I am an amputee, and that just only adds to the fun! (NOT!!)
In addition to all of this medical drama I have described above, I am also overweight; but hell, I don't care..as long as I am happy with my weight, who the F*** cares how I may look? I am happy with myself; and I wish other people'd accept me for ME, not for what I may look like on the outside! I am a "very happenin'" black chick, and I LOVE myself! So THERE! >:(
And my husband, Franklin, loves me, as does my mama...what more could I want outta' life? Plus I have God on my side, and THAT is a BIG bonus in my book! :)
This is a very well written piece, you describe it well enough to let the reader live in the characters shoes.... I think you need to find a publisher for this series, because it could educare a lot of people!
God Bless
~Michelle~
Re-Release! No longer back-listed. Return to the Olde Ways. The hustle and bustle of modern day life has brought many of us to a quick fix attitude.This book is for those of you who are fed up; have looked at your life and your loved ones and realize
My name is M'Kaya Mnjama (Emmin jama is how you pronounce my last name; it's African), and I am 45 years old now. I just turned 45 back in September.
