Multiple Sclerosis

[soleil2020]

I think of all that MS has robbed from me, my self-esteem is my most valuable loss.

And I don't know how to get it back.

I came from a very poor upbringing. My family couldn't afford even the barest essentials. I spent half of my childhood with no electricity or running water in my apt. because my mom couldn't pay the bills even though she worked.

I had a very abusive alcoholic step father figure. My mother joined him in drinking and she too became a full blown alcoholic.

By the time I was 15, my siblings and I ran away to escape the abuse. Finally, the authorities made my mother's boyfriend leave.
My siblings and I returned home and then not long after that we were all evicted from out apt. All of our belongings were put out on the street.
The kids in the neighborhood were cruel and jeered at us as they watched it happen.

So, we were homeless. (I also had two younger brothers and a sister.) We wandered the streets and sometimes stayed in Salvation Army shelters.

It was unheard of for anyone in my family to go to college, but I did. I went to college right after high school, but I started working full time in a publishing company and decided not to get a degree. Instead I met the man who was to be my future husband and father of my two beautiful children. We had a decent middle class life with our own home and two cars. We were comfortable financially. Unfortunately, my husband was abusive to me. It took me a long time to realize that that was not something that I had to accept in my life. Eventually, I broke free from that. Fought for custody of my kids. Won.
I was living in Ga and Fla and decided to move back to Maine ( where I was born but only lived until I was 4.) I drove all the way from Fla. with my children. ( they were 2 and 4) We had only what we could fit in a mid-sized rental car. We were starting over with nothing. I had to apply for assistance.
I decided to go back to school. That was the only way I was going to get us out of the rut we were in. My kids were very young and often times I had no other choice except to bring them to class with me if I didn't have adequate daycare. I was lucky they behaved like little angels. I earned a degree in French even though it was very difficult at times. ( I was already sick with MS but drs kept telling me I was just depressed or stressed out.)

Anyway..earning my degree helped me realize that I was a capable, brave, intelligent and resourceful person. I created my own self esteem. Before my earning my degree I often felt like a useless failure. But I had scratched and clawed my way up from crap and found some confidence.

Fast forward a few years. I started teaching French at the school where my kids were attending. I loved it so much. My students loved my style of teaching. I use lots of humor and encouragement. I was on top of the world. My boss raved about me. It was like I was her star teacher. We were finally doing okay financially 10 or 11 years after my divorce.

All the while, I had been struggling with re-occurring MS symptoms that were usually quickly dismissed by doctors as being "all in my head" .

Then last year, when I was the happiest I'd ever been in my adult life, I started having cognitive problems. I couldn't remember what I was doing from one moment to the next. My whole right side went numb. I ended up in the ER with horrible eye pain. ER doc said, " optic neuritis" and " Do you have MS?"
Soon after that I finally had an MRI . Yes, I had MS.

I was having trouble raising my right hand to write on the board, so I learned to write with my left. I had a week where in I could barely talk. It was then that I decided that I would have to stop teaching. It broke my heart as I told my middle schoolers what was going on with me. They knew something was wrong. I shared with them the news about my MS My daughter was still attending the school. As I told her class, a tear fell down her face in slow motion. Her friends, classmates, my students joined her. The girls didn't try to hide it. The boys hid their faces. I told them " Don't forget the things I've taught you aside from French. Don't forget that all of you have so many qualities deep inside. Don't forget that what is within you is bigger than anything that happens to you in life. " and then I told them finally , " don't forget to laugh every day and don't forget that I love you. Each and every one of you."

They formed a team and walked in the MS Walk with a banner that read " We walk for our French teacher." On our last day together as teacher and students, we had a party we talked and laughed and they decorated my white board with love notes. I miss them all so much.

Anyway...to get to my point...I had asked to be reassigned to a less stressful position. Maybe I couldn't teach French right now, but I certainly was capable of still being valuable to the school. Right? Right? Well, my boss simply told me that nothing was open and that she would let me know if something came up. She talked to me as if I were a stranger. I kept reminding her periodically that I was still interested in working and that I had had extensive clerical experience as well as ed teching experience. No replies from her. Then in Oct I found out that something came open. A little part time office job. She offered it to someone outside of the school. Then in Nov. a part-time ed tech job came open. She quickly filled those hours " by another staff member" she says.

I wrote her two emails asking her specifically why she had not kept her word with me. She ignored my question and responded once with " I'll let you know if something comes up that I feel best suits the school and your skills."

I have been looking for a job everywhere. I can't even get an interview. No one will even give me a chance to do the simplest of tasks. They don't know I have MS, unless they are calling her for a reference and she is telling them. I don't know.

So...now my self esteem is down to nothing. I am on SSI. I feel useless. We are barely making it. This Christmas there will be a few surprises for my kids due to the help of some good folks at the MS Society. I am very very grateful to them.

At the same time, I believe that I am a loser. I feel like I'm getting more and more stupid because of MS. Seems like most of the world has me on "IGNORE" when I try to get a job. I've had at least two occasions where in it seemed like I was about to get a job, when the person suddenly said,
' Actually,we don't need anyone. " or " actually, that job was filled twenty minutes ago." when I had been discussing the position with person the day before and it seemed like I had it in the bag.

okay..so to get to my original question: how does one get back the fragile self-taught self-esteem when it's gone and I am continually facing rejection left and right. I want to give up. I keep breathing because my kids need me to. If it were not for them, I believe I might just stop.

Look I know this post is ridiculously long. I just had to get this out. Please, don't anyone come back at me with comments like I'm feeling sorry for myself..blahblahblah..I am not the type of person who wallows in self pity. I have always fought hard to bring myself up. I refused time and time again to give in. I'm just growing tired of fighting so hard for a little bit of self worth.

[ElJay]

Hey Soliel2020
I believe that you have taken a huge first step in regaining your self esteem by writing this letter. It must be very hard to do it "all alone" but remember, you are NOT alone! I must admit that what you say about loosing all hope and wanting to give in, is very real and not a selfish way to think. It is hard for us, as MS suvivors, to accept the fact that this disease often controls what we can and cannot do, and which dreams we can and cannot achieve. I also know, that even thou I have days/weeks where I feel that I do not even want to get out of bed, those days eventually pass. Is there some way that you can apply your beautiful talents with children in a "volunteer" environment? It may not pay the bills, but it will make you feel so much better about yourself in the long run. One thing that I have learned, is that children see through the disease, and accept the person that is inside. Do not give up, and give those young'uns a special hug tonight before they go to bed! They make it all worth while!
Keep up the spirit! You gave ME strength just reading your story. Thank you.
ElJay

[michellewalter]

Hi,
your story really touched me too. For a couple of reasons firstly I can understand your feeling about feeling like a loser again after all the struggles you have had and won to prove you are something more - and you are. But those childhood demons keep trying to come back to claim us! I also came from an abusive childhood, broke free, educated myself and made something of my life - only to find MS try and make me feel like a victim again. I find it is important not to let these feelings define you. I really want to study and do a PhD in consciousness studies and the power of the mind, but as I enrolled I got diagnosed with MS and the pressure and cognitive effects stopped me in my tracks - I felt dumb, paralysed intellectually and incapable. I have stopped and re-evaluated my life and my dreams. I know I got ms for a reason and I feel I have to make some personal changes that will help my body and mind come into harmony again and ultimately make me happier. But it is hard to believe that I am working towards something real and meaningful for my future - when it feels just like another blow. But if I have learnt anything from my difficult past - it is that the most important thing is how you respond to these challenges. They can bring you down, define you or bring out the hidden depths and strengths (as you tell your French students).
I imagine it is harder for you with children to support.. but I do feel everything happens for a reason and if you keep an open heart asking for help and support who knows what wonderful surprise or special person will pop up to answer your prayers?
With regards the job situation - it is discrimination and maybe you should consider taking it further. My uncle who had MS sued his workplace successfully for discrimination. They fired him when he got diagnosed with MS and he took it to court. Maybe this is your next battle????
Take care and be proud of the wonderful, strong woman you are :)