One evening long ago (August 22nd, 1990) I began to feel very strange physically. My hearing seemed off and my fingertips had an odd feeling when I touched anything. I went to sleep anyway and awoke about 4am. I felt a strangely familiar odd feeling. For the two years prior I had experienced some numbing that would come and go. I lost my ability to write and to see normal during one of these episodes. One time my entire left side became numb. My sister who is in the medical field made an appointment for me where she worked. They gave me tests and more tests but they all came back negative. I cancelled my last test and went to a chiropractor instead. A few weeks later all the feeling returned so I thought he had "fixed" me.

 

So the night I woke up at 4am, I tried to write and could not do it. I was very scared. Little did I know that within 24 hours I would go downhill to the point of losing my ability to do almost everything except think clearly and maintain my sense of humor. My mom called a neurologist and she told me to go straight to the emergency room. I got there about 12:30 in the afternoon. I was finally admitted to a room about 2:00 in the morning. Little did I know the next 59 days were about to be the longest 59 days of my life.

 

I could not eat, or talk, or move with coordination. My legs were paralyzed, and I felt an alien feeling all throughout my body like I had never felt before, nor could I have imagined the feeling so I can only try to explain the feeling to you. All my organs felt thick and obvious, my bladder would spasm once in a while for nothing and force the catheter out and consequently pee the bed. I could not swallow at will so feared choking on my own saliva. That is when they gave me a machine that suctioned out the excess saliva. My amazing feat of the day was to get the suction tube to my mouth. I had lost my coordination so it was an accomplishment every time I did it. Answering the telephone was a three minute effort. I'd finally get it off the hook, and then just keep saying (in my jarbled sounding voice) "Don't hang up, I am trying to pick up the phone." They knew and they waited for me to get the phone to my ear, or close to it anyway. 

 

Soon after that is when my family started taking turns staying with me round the clock. Without them there all the time I would have truly died inside. They started me on an IV right away and since I couldn't eat they fed me through a second IV.

 

In the beginning when they tried to get me to sit in a chair, they had no idea I was completely unable to do that. Well, they dropped me on the floor. I was very heavy and they just didn't understand the extent of my illness and how weak I was. You would not have wanted to see them try to get me back up. After about three attempts to get me up off the floor and back into bed one of them had an idea. They laid a sheet on the floor under me and lifted the sheet. It worked. There went inhibition out the window.

 

At this point I could not feel hunger anymore. This was probably a good thing. Actually I could not feel my stomach. I just remember thinking that the feelings inside my body were so strange and so intense and alien that I could never explain it to anyone. I remember thinking that I could never have imagined that a human being could have this physical feeling. It's way trippier than any LSD trip, trust me.

 

I continued going downhill for five days. They scheduled me for an MRI but I had to wait until Sept. 10th as I was too heavy for the MRI machine at the hospital. I was taken by ambulance to a nearby facility to have the MRI. When they put me in the MRI tube they packed these styrofoam things all around my head and it was very hard to not move my head for the entire 30 minutes. I made it though. They pulled me out of the tube only to find out I had to go back in for another 45 minutes to have an MRI done of a different area. I cried. My back was aching from always being on it. I just cried. I thank the Lord I fell asleep right away and woke up at the end when they said my name.

 

I'm so thankful my family was so wonderful to be with me all the time. In fact, they ended up putting me in a private room because my family was staying the night with me. They took turns. They will never know how much I appreciate their love and dedication to me at that time especially my sister Juanita. 

 

I cried a lot during my hospital stay, it was not typical for me. My emotions were effected and every time a visitor came to see me I cried like a baby. This was the MS, as I very rarely showed my emotions at that time in my life. To this day I still cry a lot easier than I ever did before.

 

My breathing had become quite shallow and they were concerned so they gave me this contraption thing so I could try and blow the balls up to the top of it. It was an effort and eventually I got the balls to move and towards the end of my hospital stay I got the balls to go to the top. This "thing" helped me get my breathing back a lot faster.

 

My mom made me a cake of flowers on my birthday since I couldn't eat. (seven days after being admitted to the hospital) That was neat. The nurses went crazy about that silly flower cake. I was on a great floor for the first nine days. Then to the total amazement to my doctor they changed me to another, older part of the hospital. It was like going from brightness to darkness. On 9-North they had intercoms to find out what you needed when you buzzed them. They answered immediately and came to your room within ten minutes at the most. On 6-South you were lucky if they came to your room within thirty minutes. Once again, my family saved the day - every day!

 

During all this I could not talk. The right side of my face including 3/4's of my tongue was numb. My words could not be understood. My niece Angela bought an alphabet placemat at a drugstore. They would point at a row and I would shake my head yes at the correct row the letter was in (I never lost the ability to move my head during the whole thing) and then they would point to the letters and I would shake my head at the correct letter to spell out words. I remember this one time my sister, after spending much time with me trying to figure out what I wanted to say so urgently, couldn't believe all I wanted to say was to get a hair off my left shoulder area that was bothering me. I made them all laugh. I truly thank God for a sense of humor. I never lost that!

 

At this point I was becoming really tired of looking at the ceiling. They only came in to roll me to the other side (to avoid bed sores) once a day, if that. They were supposed to do it every two hours by the clock. My family made sure I was rolled more often. My doctor ordered "Sequential Teds" for my legs. They are plastic leggings that constrict and release pressure to help blood flow in an effort to avoid blood clots. Since my legs were paralyzed these were necessary. The nurses were supposed to take them off two times a day to give me a break and air out my legs. They did not. They did it about one time a day if I was lucky. Many times the nurses came in to put them back on and acted like they had no idea how they went on and certainly had no idea how tight to set the controls. They did it very loosely. My doctor (neurologist) came in one day and saw how loose they were and threw a fit. It was too late. I had already developed a blood blot in my right leg. None of the nurses could get an IV in my foot to get the venogram test, not even the nurses that took my blood every eight hours day after day. My hands and arms were so black and blue from getting my blood taken it looked like someone had beaten me up. A doctor finally came in and attempted it and was successful the first time.

 

So now I had a needle IV thingy hanging off the top of my right foot. I was rolled on one of those wonderul carts to "somewhere" by the very young orderly kids who I am sure did not have a license to drive those things. It ended up being a place on the first floor that tested for blood clots. Here I was, could hardly roll over, couldn't stand alone, and this bimbo testing mean nurse lady, who was definitely not having a good day, told me to climb over on the testing bed. I was so mad at her. Guess what? I did it! I guess it was stubborness. It was good for me because it made me realize I was physically stronger than I thought I was. Then she said she was raising the table to an almost standing position and I would be standing on my left foot alone. Did she not know what was going on??? The test would be focused on my right "dangling" foot. So guess what? I started to panic, but caught hold of myself and decided I would just pretend I could do it. Guess what? I did it!

 

That was the beginning of an uphill adventure. Getting coumadin shots in my stomach for thinning my blood, because of the blood clot, was hard to accept at first, but they did not hurt like I thought they would so I was ok with it. Something changed inside of me. I had regained the use of my legs. The right one the most. I had been having physical and occupational therapy every day and was making great progress. I was now feeling I was on an uphill climb!

 

They had me on something I call a finger machine. It was to check your pulse constantly and moniter it from the nurse's station. I was finally able to shed that along with the IV that was feeding me and get back to eating. They gave me a couple of tests earlier and I was not ready to eat as my swallowing was not there yet. It was back now though. Don't get me wrong, my doctor ordered me the "diet" version as I was overweight, so it was not that exciting yet.

 

I was so tired of everyone bathing me and giving me the bedpan, giving me enemas, giving me "other" applications for infections I caught THERE, and so very tired of the catheter. When I finally shed all this medical garb and was learning to walk again, I was like a new person. My sister let me walk to the bathroom with her help and a walker in secret behind my closed door. It was so wonderful. I could not wait to go to the rehabilitation section where you get out of bed and get dressed every day and take your own showers in a wheelchair and eat meals in a common room with the others.

 

Every once in a while they would wheel me on a cart to this giant shower room and hose me down like a car. It sounds weird, but it felt so very good. As I said, I was overweight so when they tried to weigh me and they couldn't, they brought this big weighing contraption thing in to weigh me. They felt compelled to get my weight documented for some reason. Anyway, they rolled me over on my side and put this big canvas thing under me. They then attached it with these clip things to the contraption part. They then pushed the button and it lifted me and it looked like a stork carrying a baby. I'm sure you can picture it? Inhibition got thrown out the window a little further.

 

Well, after the venogram experience I was on my way back. They had given me a big bed called the "Big Boy" bed. Isn't that just a super name? The foot of the bed dropped down like a seat and you could stand easier when the physical therapist came. There were railings to hold onto also. They installed a trapeze above my bed so I could turn and move myself and get around in my bed better once I started getting my strength and movement back.

 

"Burgers" 

A friend of mine finally came to visit me towards the end as she was not feeling too good about seeing me like I was. My last name back then was Burger. It was on the dry/erase board on the wall in front of me they used for pertinent information. She added a price and choices of with or without cheese. She made us all laugh a lot. Then she hung my bunny on the trapeze above me. The nurses got a kick out of the Burger menu.

 

I remember when my other sister Connie from New York came and visited for ten days, she spent this one particular night with me and I was able to turn over in bed all the way around for the first time. It took me about an hour to make one complete turn. I saw the wall behind me and was so excited to see an electrical outlet, especially so close to my face. I saw charts and signs and "things". My sister just laughed and laughed. It tickled her to see someone get so excited over seeing an electrical outlet. Listen to me, you try and lay down staring at the ceiling day after day after day. You'd be surprised what YOU get excited about, too. When they would wheel me on a gurney to a test or whatever I would make comments in my "just left the dentist chair" garbled sound, about the different ceiling I got to look at in the hallway. The elevator and hallways were a treat.

 

I learned to love TV! I decided right away they should not have the clocks in front of the beds. When you have nothing to do and you start to watch the second hand go around, counting down time, that is when time literally stands still like you've never experienced before. I was getting better and was now able to swallow my pills instead of having them crushed up in applesauce. But then a nurse would work that had been off for about five days and instead of reading my chart she just did the applesauce thing automatically. Do you know how discouraging that is to someone who does not have a lot of accomplishements going on in her life?

 

At first I was assigned a resident doctor that was wonderful. He was soft-spoken and had a face of deep concern. I did not realize he was only mine for the last nine days of August. On September 1st this weirdo doctor man came in to see me and told me he was my new resident doctor. How depressing on top of everything else. He caused more trouble than you will ever know. He was very odd and quite obnoxious.  My neurologist finally told the desk she did not want him to see me anymore. What does that tell you?

 

I had great Physical & Occupational Therapist's. On Labor Day I had a temp. She was insensitive, rude, and just plain mean! My session was cut short, thankfully! I realized how much I appreciated my own therapist's so very much. I told them so when they came back after Labor Day.

 

I found myself loving the rehab. floor. There were therapist's there too, but different one's. Everything was designed to get you to be independent and go home as soon as possible . I loved that and I was ready. They pushed you to do everything for yourself. That was right up my alley. I was in a room of three beds. One of the other women had MS also, but she had a different type. My neurologist made sure I knew that and she also told me I should not even think of us as having the same disease as mine was a different kind. That helped me a lot. We got to eat in the dining hall with everyone. We had to get dressed in our streetclothes everyday. I was so glad about that. My sister Juanita made me pretty flannel hospital gown's to fit me and also with snaps to get in and out of easily with the IV's. That was so very kind of her. It meant a lot more than she'll ever know.

 

I got to go out on "leave" on the weekend. My mom took me shopping in a wheelchair one Saturday to buy new clothes. I used to wear Levi denim jeans. I could no longer stand the feeling of denim on my legs. I bought spandex legging pant things. To this day I still can't stand the feel of regular jeans on my legs. After two weeks in rehab. they let me go home. I still had to go to outpatient therapy for walking. It was not long after I got home that I sent the walker and cane they sent me home with back to the medical supply place. I'm telling you, I felt like they were trying to make me more disabled than I was ever truly going to be. I do not feel disabled.

 

I have the kind of MS they call benign. It is the kind that starts out worse than most with MS ever get, yet you get better and usually don't have episodes like the other two kinds do. The other kinds start out on a smaller scale with numbness and stuff and progress but, then go into remission for a while. One kind is more episodic/remittant and the worst kind is progressive/remittant.

 

I still have the same subjective symptoms I had when I left the hospital. It feels like I have a choker necklace, a hat, and a headband on all the time. Inside my arms and legs and back it feels thick and like a wrapped up mummy feeling. When I first got home I took off my shoes to straighten my socks and discovered they were already straightened. It feels like my socks are balled up on the bottom of my feet all the time. The tip of my left ear feels like someone is pinching it.

 

Sometimes I get pretty annoyed from getting so fatigued so fast. I have a hard time standing in one place for very long as my legs go numb, but I know that is just the way it is from now on. I have learned to accept that. I do have various symptoms that come and go concerning nerve pains in my legs. I have an ancy-ness that is from the MS, but not a huge deal. I have to move my leg position like every five minutes. Sometimes I find myself shaking my leg continuously when I am at the computer. Like I said, no biggie.

 

I believe I am blessed and I would not change my life one iota if I had the power to do so. I have a whole new life now with my new husband who I married in 1999, and with our new building we moved into in 1998 at Daisy Petal Florist life is very good! Sometimes when I look back I get a little angry at the nurses' ineptitude. That is something that can never be addressed or fixed by me so I just leave it alone. William Beaumont Hospital in Royal Oak is no place to go if you have MS, but for other things it's a fine hospital. I just take my experience for what it was and I know I am influenced by it in a positive way still today.

 

Where was God during all this? I was buried in cards, gifts, prayers, visits, and phone calls from people at my church. I received over 200 cards. My mom noticed there was only one day I did not receive something and that was the day after Labor Day. I felt cradled in God's love and I knew no one could hurt me. I count it a privilege to have this memory!!!