Echoes: Can our pasts lead to illness?

I am going to begin a new "section" here but I have a feeling this is going to branch out into the rest of what I write. I find from talking to other MS and Fibro patients that a LOT of us had horrible experiences growing up that either followed or "found" us in adulthood. I have to wonder if our immune systems had to go into overtime to help us get through some of the ordeals we went through.

My childhood was not the worst but it was definitely not fun either. You couldn't pay me enough money to make me choose to go back in time. I was a picked on/bullied child in school all the way up to my last year in high school. I was also a runaway; I ran away twice and I never returned after my second try. College was a fun experience the first time around but I didn't get out of it what I should have. I (much) later received my degree in 2012.

Please bear in mind that my intent was not to get hung up on things having to do with my parents because this is not intended to just be an autobiography. By the time I was done writing this section I was a little surprised at how much time I spent going on about my father. Despite not wanting to only focus on my own “life story”, I do want to go over some problems that I had during my childhood and beyond as I feel these things all could have contributed to the Multiple Sclerosis manifesting in me. I also have gone into as much detail as I have here to share my story with you and to invite you to share back if you wish.

I’m always hearing about how stress can be physically bad for us and I definitely believe it’s true. I also have spoken with many others who have MS (and/or other invisible disabilities such as Fibro, Lupus, Spina Bifida, etc.) about this and many have told me some serious “school of hard knocks” stories. I am astounded at the horrible things my close friends in the disabled community have told me they went and/or go through either growing up and/or with their family, friends and colleagues currently.

I think a lot of us have more in common than we realize. I know that science has found that, the further away a person lives from the equator, the more likely they are to develop MS. However, I have to wonder if the stressful backgrounds we come from are contributing factors. I truly think they are.

Like almost everyone else I know and/or grew up with, I am also a child of divorce. I spent the first year of my parents' break-up living with my mother. Things were very bitter between my father and mother. I wound up going to live with him after the first year. I stayed with him until I was sixteen years old. I hope this section will illustrate some of the hardships I have had in an effort to show others that they are not alone in much of what they have had to face.

Even though I was very young when my parents split up (I was just getting into the fifth grade of school. I believe I was eight years old), I remember having an insight into things I had many counselors speak to me about. I remember knowing that the break-up was not my fault. I also remember understanding that it was wrong for one parent to demonize the other to their child and therefore realized my father was wrong in constantly badmouthing my mother to me. Despite getting this, I never told anyone he was doing it. He did this the entire first year (after the breakup) when I lived with her.

Every weekend I would fly between New York and Massachusetts to visit him and he would show me a tin can he was filling up with money. He would tell me the money would be all mine if I ever came to live with him (this tin can will be brought up again in this section).

My father did not appear to know that badmouthing an ex-spouse to your child immediately after a breakup was a bad thing to do. I recall being proud of myself in that I thought I was mature and/or clever enough to understand that what he was doing was wrong. I was able to make up conversations I had with my mother to please him. Whenever my mom and I would get together he would “prep” me by giving me things to say to her. When I was back with him he would then ask me to report back on her responses to them as well as give me “ideas” of things to say the next time I saw her. This went on for many years after I ended up living with him.

It never dawned on me that I should have asked for help from an adult or at least informed one of what was going on). Then again, there were no adult figures I felt I could approach in the first place. I did once tell a so-called friend what my dad was doing and, when I was done, she told me she thought I was crazy. To this day I cannot understand why that was her reaction to everything I told her. I guess she just could not deal with the reality of it. Her somewhat callous response was not helpful to me at all. She just made me feel more alone and isolated than I did before. I had not told anyone else what was going on and this was the response I got from someone who I thought was a close friend. Now I felt certain that there was nobody I could tell.

Regardless of all of this, I couldn’t picture myself as a “victim” of emotional/verbal abuse. I didn’t realize I was a victim until I lived with him for about four more years. As intelligent as I thought I was, I was not smart enough to see that he would never stop putting my mother down even after I went to live with him. He didn't stop talking badly about her until very recently and I think he stopped because he finally realized how upset and angry it made me the last time he did it.

He picked a very bad time to do it too – I had just called him to tell him my stepfather Martin (who I was very close to) had recently passed away and he told me he was sorry I was sad but that my mother was “dead to him”. I was not expecting him to be completely supportive about my stepfather. I realized that Martin had been married to my father’s ex-wife, but my mother and father had been divorced for over 25 years at this point. I was extremely sad and hoping for a father figure to speak with. I was calling my dad to cry and make sure he knew I loved him because another father figure in my life had just died. Having him say my mother was “dead to him” at this point in my life was just too much for me to take; I hung up on him. He has since apologized to me for that and for his anger at women in general. He seemed to finally get how much it was dividing us.

When I was living with my father, I did not understand that I was being put in a position I shouldn’t have been in. My mother recently told me that she felt really bad about the way the breakup went for him and that she didn’t feel he did anything horrible to her. She said the only thing she felt anger towards him over was what he put me through. She said (and she was correct) that he should NEVER have “dumped all of that” on me. I was only eight years old and this man was telling me my mother cheated on him as well as telling me with whom. He tried to make me feel like her leaving was partly because of me; he always said she left us both even though she took me with her. I also remember trying to get him to get a girlfriend. He told me once that he tried dating someone and she didn’t like that he had a daughter so he gave up and never tried to meet anyone again that I am aware of. So, on top of making me feel partially to blame for the divorce, he made me feel responsible for keeping him single. While I realize my father never deliberately did any of this to hurt me, it still was a very hard thing to live through/with.

I apologize in advance for the racial slur I am going to use in this next paragraph: To add insult to injury, he and I went and stayed with some friends of his in Florida. His good friend’s wife called my mother a “good for nothing Kike” right in front of me and I felt powerless to say anything back to her. She was German; I do not point this out this to be racist but it is pertinent to this section. I was very upset to hear her speak about my mother the way she did. At the time I believe I was ten years old and was starting to see the disadvantaged situation I was in. It really shocked me to hear a German woman use such racist language against a woman with a Jewish heritage. I had learned a little bit about the Holocaust in school and I remember thinking she had a lot of nerve to be badmouthing anyone Jewish, let alone my mother. This wasn’t the only time she did this. In order to avoid having my father get angry with me I felt I had to pretend to agree with all of the horrible things she said.

Whenever we would see them this sort of talk would happen. Whenever it did I had to just sit and keep my mouth shut even though I had some choice words that I wanted to scream at her along the lines of “who the HELL do you think you are?” for starters. It wouldn’t have been pretty and would have probably accomplished nothing except to get me into a LOT of trouble. It didn’t help that this woman (and her daughter) were both very racist - not just against Jews either but against every “minority” group out there. Their bigotry was inconceivable to me. This sort of racism still deeply offends me and probably always will.

Another thing my mother brought up to me recently was how surprised she was that I wanted to live with my father in the first place. Looking back on my life now, I can certainly understand her surprise. I was afraid of him. He was always so angry. A very, very early memory I have of him was when I was in kindergarten. I remember him spanking me and yelling that he wouldn’t stop spanking me until I stopped crying. I honestly don’t know how long the spanking actually lasted. I do remember that he did not stop until my mother came home and saw what he was doing and that she also made him stop. I don’t remember what I did to “earn” the spanking but I honestly don’t understand how anyone could think telling someone they would stop physically hurting them as soon as they stopped crying could be effective.

Moving on through childhood: as I have written before, I was a bullied child. This started in Kindergarten and didn’t stop until I entered my senior year of high school. I went to Catholic school from the sixth until the eleventh grade. My senior year of high school was at a public school in the Bronx, New York. I probably got picked on because when I was growing up I had absolutely no sense of humor. I was also horrible at anything and everything gym related and I am certain the MS had something to do with it. I had a bad tremor and my equilibrium was never normal. I do not think that knowing I had MS would have prevented the other children from picking on me though. Unfortunately bullies are just cruel. A particularly bad gym memory I have is of a dodge ball game. I do not remember what grade I was in but I do remember my own team cheering when I got hit and had to go to the bleachers. It was humiliating.

After my parents broke up I went from school to after-school camp. I was bullied in camp too. I remember reading about “latchkey children” (i.e., children who went to an empty home after school due to their parents being away at work) and wishing my parents would let me be one. I would have felt much better at home by myself rather than being in camp with a bunch of children (and in one case a camp counselor who told me she didn’t like me and who then asked me to stay away from her – I was nine years old at the time) who couldn’t stand me.

So school and after-school camp (and summer camp) were nightmares for me. In a baseball-like game at camp I had another child who almost seriously injured me. She threw a ball at my head and it missed me by centimeters. It took a fairly large piece out of the tree it hit right next to me though. As this went on I continued to get sick fairly frequently. I didn’t mind however - being sick kept me from having to go to school.

When I was in the fifth grade a male student came up to me and, right in front of our teacher, grabbed my breasts, squeezed and twisted them. The teacher watched this happen and did absolutely nothing about it. I later found out that my mother did not care for this teacher. Apparently at a parent-teacher meeting she met her and was told that she (the teacher) “hated children.” Obviously being a fifth grade teacher was a very bad career choice for her. Despite her negative feeling towards kids, she should have done something about the boy who accosted me right in front of her. I had other students who physically came after me. I also had one who lived right near me and he used to chase me on his bike every day on the way home from camp.

Looking back I think I was hoping for school to be better if I got to move in with my father. I don’t know why I thought that would happen and I don’t know why I was so miserable living with my mother. I think the fact that we were living in dire poverty had a lot to do with it, despite the fact that she managed to hide it from me very well at the time. In addition, as smart as I thought I was as to what my father was doing when he talked negatively about my mother, I believe he successfully poisoned my mind against her. I blamed her for all the horrible things I went through at school. I blamed her for everything.

I believe it is Pink who has a song about communicating to her 16-year-old self. I wish I could go back in time and speak to the me that was just getting through my parents splitting up so I could tell myself that I needed to get an adult involved in what I was going through.

I was wrong in thinking about school getting better when I went to go live with my father. It stayed bad and I remained a “bullied kid” until I ran away from home. I don’t know why children are so mean to each other. I think part of it is the feeling of being powerless combined with peer pressure. I’m sure that even some of the most popular kids have a lot of emotional issues that they have to deal with. Add to this the fact that when one child is bullied and/or picked on by the majority (regardless of the reason), the “majority rules.” How can this not lead to mean-spirited interactions?

When I lived with my father he wanted me to go to Catholic school. He wanted to distance me from my mother as much as he possibly could. My mother is an artist and, as a result of his anger towards her, any interests I exhibited towards the arts made him angry and resentful. He took his anger out on me by yelling at me and forbidding me to have anything to do with the arts. He usually followed things up by telling me he would disown me if I didn’t follow his rules.

This was a major problem for me as I have always had an interest in the arts. He pretty much destroyed my chances at doing anything “artsy” while I lived with him. I had a lot of illustrations and writings that I did while growing up that I wound up throwing away. I would love to get all or even some of that artwork back but it is all gone.

On top of constantly yelling at me, he would often act very unhappy and sad and would sometimes guilt me into thinking I was causing him to feel unwell because I was acting so much like my mother. I do not think he did this intentionally though. I think he was so hurt by the divorce (his second) that it really did get to him and manifest itself physically. Unfortunately, he often made me feel like I was the reason behind his sadness.

I’m fortunate that he never physically abused me but I remember wishing he would do that instead of psychologically/verbally abusing me. I think I wanted him to hit me so I could prove what he was doing to me. Everyone who met my father thought he was wonderful and nobody was able to see what he was doing to me.

Another thing I should note about my father is how much older he is than my mother (I believe they are about twenty years apart in age). He is very old fashioned and, as a result of being born deaf and not learning his native tongue correctly (and therefore not learning English correctly), he had many communication problems.

I remember hanging out with some friends near where we lived and having him come by and scream at me in front of them for not wearing a brassiere. I was very top heavy and he told me I looked like a prostitute when I didn’t wear a bra. My friends (females and males) appeared to be uncomfortable and a little embarrassed that he would say that to me in front of them. I was mortified. I always had a bit of a complex about my breasts (I even had reduction surgery in 1998) but having him do this certainly did not help.

I had so many bad experiences while I was living with him that I began to go a little out of my mind. I actually had it pointed out to me by a friend’s mother that she saw me sitting on a bench staring off into space and that I didn’t react when she tried to get my attention. I also had a few experiences where I would realize I had been crying without knowing it. I felt that there was absolutely no way out. I started hurting myself. I think I just wanted someone to notice me at first but I got desperate when I couldn’t get the attention I was seeking. I then made the mistake of meeting with a counselor at my school (she was a nun) and telling her I didn’t want to live anymore. Her “helpful advice” was to tell me I would burn in hell if I killed myself. She offered me no useful advice whatsoever.

As I lived with my father and as I came to understand how miserable I was and would continue to be, I asked him to send me to a therapist. He became angry and yelled that “no child of” his was crazy. He refused continuously to send me in for counseling until I lied and told him I wanted to speak to a therapist about my mother. Since he was still so angry about the divorce, he was OK with the idea of sending me in for therapy if it was about her and I played on that anger and used it to my advantage.

I reached my “breaking point” towards the end of my junior year of high school. I decided I couldn’t take it anymore. This was when I asked to meet with a therapist and lied and said I need to see one about my mother. I was right – as soon as he thought I needed to see someone over being upset about my mom, he sent me right away. I don’t think this therapist was expecting our meeting to go the way it did. I told her everything. When we were done, she asked to speak with my father alone in her office. I sat out in the waiting area for what felt like an incredibly long time. When they were done meeting, she called me back into her office. I thought I was going to get yelled at.

Instead of yelling at me or giving me useless advice, she asked me if there were any adult figures I knew who I could live with. She told me she did not usually advise people the way she was about to advise me, but that she thought I would be much better off living with someone else if that was an option. I took this as my queue to leave. My first time running away wasn’t very successful. I ran away and went to live with a friend. I lived with her and her mother for a week and then my father found me and forced me to come back home.

A few weeks later I ran away again. This time the friend who I went to live with a few weeks prior wanted to come with me. She told me her biological father, who lived in New Orleans, had agreed to take us in. We went to Penn Station in New York City to get on a train to go out there. A friend of hers’ (the girl I ran away with) called the cops and gave them our description. He told them we were prostitutes and we wound up getting cuffed and brought in for questioning.

At the time I was very upset by this but it turned out to all be for the best. Mary’s father had never agreed to let us come live with him (I don’t even know if she ever really got in touch with him). Another thing I didn’t know was that Mary planned on us both committing suicide if things didn’t “work out” for us with our attempt at running away. When the cops brought us in for questioning they put us in separate rooms. Mary didn’t have any paperwork with her so she was questioned for a long time (longer when the cops found the pills she was planning on us using to poison ourselves with if things didn’t go “our way”). I had all of my paperwork with me (school ID, birth certificate, any other paperwork I could find and a box filled with change).

Mary finally got put on the phone with her mother and my father was at her mom’s house. When Mary was done speaking to her mother, I got put on the phone with my dad. The first thing he asked me was if I stole the money he kept in the tin can in his dresser. I answered that yes I had taken the money but that I didn’t consider it theft because he had told me growing up that I could have it if and when I came to live with him. When I told him this he got quiet for a few seconds and then told me I was no longer his daughter and hung up on me.

For the first time I was finally free but I was also terrified since I had no idea what was going to happen next. I didn’t know where I was going to go and I certainly didn’t expect Mary’s mom to offer to let me stay with them since I had been about to run away from home with her daughter. Fortunately for me, my mother’s brother (who also lived in New York City) offered to let me stay with him and his wife.

I am going to skip ahead some years here because, once again, I don’t want to get completely “bogged down” in my own life story outside of the “invisible disabilities” that I have. I do, however, want to cover other things that led up to the MS diagnosis. My senior year of high school was a big improvement for me now that I was no longer living with my father and no longer in Catholic school. I had to work and had to do a lot of household chores to help my Uncle and his wife but I was in paradise compared to the way I lived prior to running away. My life got quite a bit better when I left to go to College.

I went to school full time for two years as a creative writing major. I didn’t really take college as seriously as I should have and I dropped out after my second year because I remember thinking I could finish it “any time I wished.” I was very much mistaken about this. I was too young and foolish to realize how much life could and eventually would get “in the way.”

After I dropped out of the State University of New York (SUNY) I had been attending, I moved to Massachusetts back to where my mother had gone to when she left my dad. I began working right away and I enjoyed making money and being able to afford my own place to live so much that I forgot about school for a long time. I didn’t start going back until I got a job somewhere that offered tuition assistance as an employee benefit. I tried going back part time and I took a few classes here and there, but finishing up and getting my degree felt like an impossibly long “project.” I didn’t think I would ever be able to graduate and get a College degree.

In 1994 I got a job at a very well known University in Massachusetts. While I was working there I got diagnosed with MS. I was very fortunate in that I had a job with benefits at this point in my life. I also met my husband while I worked at the University. I worked there for eleven years and over ten months before I was laid off.

A year before getting laid off, my husband and I got burned out of our home thanks to an over fifty year old water heater in the basement of the building. We lost everything we had. I am very thankful that, years before the fire, I followed my mother’s advice and got apartment renters insurance.

We had friends that we stayed with for a few weeks after the fire but being homeless for a little over a month was incredibly stressful, to say the least. It didn’t dawn on me how lucky we were to have survived until months after the fire destroyed our building. Looking back, I think I might have been laid off a little bit sooner had it not been for being burned out. A while after I was told I had been laid off I found out that others I worked with had known and/or suspected that my being let go was “in the cards” almost a year prior to it happening.

After I was laid off, I wound up working several different jobs and found myself struggling just to make ends meet. I could not find a job like the one I had been laid off from because everyone was looking for someone with a Bachelors degree. I had a few of the worst jobs I have ever had during this time.

The fire and the layoff were major stressors, to say the least. These combined with having to work at low-paying jobs that I couldn’t stand likely made my health problems worse. Unfortunately after I was laid off my former employer made finding a career particularly hard for me. I believe that someone in their HR department had likely disclosed about my illness to at least two potential employers. I know of many others (some who work there and some who do not) that believe the same thing. Either they told potential employers I had MS or told them I had “mental issues.” As a result of this, I found it impossible to find a decent job.

During this very bad work period, I had two of the worst bosses I have ever had. I had one woman I worked for who actually yelled at me on my first day. I should have anticipated this – I was the “second choice” for this position as the person they originally hired quit her job after working there for only one month. To this day, they can’t seem to keep this position filled. Even though I met with someone to discuss the woman I worked for, the employer did not seem to grasp that this supervisor was the problem with keeping the job filled. All of these things happened after I got the MS diagnosis but it was before the Fibromyalgia Syndrome fully reared its "ugly head".

Since I suspected my former employer of disclosing about my illness, I hired a lawyer who agreed to work with me on contingency but we didn’t have a chance. We went to the Massachusetts Commission Against Discrimination (MCAD) and lost there. I had gotten a letter before being laid off warning me that I was costing my employer over a thousand dollars a month because of all of the appointments I had for my MS. If I had had this letter at the MCAD trial we may have had a chance but it had been destroyed in the fire the year before.

The lawyer I hired then said we had a “really good case” that she was going to take to a higher court. Unfortunately, the lawyer disappeared on me and I was so busy struggling to find work to make ends meet that I couldn’t spend as much time hounding her as I should have. She got put on probation and she didn’t tell me until almost a year after it happened. By the time I found out it was too late for me to do anything about what happened.

Thankfully at this point I had applied for Social Security Disability insurance (SSDI) on my father’s advice. Even though he had disowned me over the phone years before, he and I were thankfully able to make peace with each other. We would never be as close as we once were again but were at least able to forge and maintain a friendly relationship by phone. I have my regrets about this and I always will. When my stepfather passed away a few years ago my heart was broken. I don’t look forward to the day when my father dies but I do not know if it will hit me as hard as it did when my stepfather passed. I do not think there is really anything good about this and I really hope I am wrong. I love my father and I dread the day when he passes.

Since I am about to move away from writing about my father (for this section) I feel I should mention a few other things: I have a half sister (on his side). As much as I complain about the things my father did to me, I must write that I feel they pale in comparison to what he did to her (or perhaps I should say what he didn’t do since he abandoned her when she was very young). This is a seriously long story in itself and I don’t want to go into her life tale (although I really feel my father “did her wrong” in a big way. I should say that I do not believe he meant to wrong her as badly as he did, however. I guess you could say it was another argument for needing a “Parenting 101” instruction manual).

Looking back on things as I write this, I realize that my getting diagnosed with MS has brought my father and me closer together. My grandmother began the process of patching things up between us after I ran away from home the second time but the MS completed it. Even though we live pretty far apart from each other I feel closer to him than I have in a long time. He no longer badmouths my mother to me and sometimes asks me how she is doing.

Sadly there is no “how to raise a child 101” guide. There should be, in my opinion. There should be a test you have to pass before you are given the right to have and raise children.

Now to get back on track within this chapter: about three years after I applied for disability, and after getting rejected two or three times and then hiring a disability law group, I was approved for it. Since the University I worked for paid me as well as they did, my disability pay was quite a bit higher than it was for many others that I knew who were on it. I certainly was not rich but I was at least able to afford the “basics” of life (rent and food). My husband also has health issues and we have applied for him as well. Unfortunately, due to cuts to Social Security it does not appear getting disability will be “in the cards” for him.

I want to end this section by saying that I recognize that, while I have gone through a lot of unpleasant things, I have also had some very significant strokes of good luck. I know things could have been much worse for me than they were. Having MS and Fibro is VERY unpleasant to say the least but I have been able to pull myself through and out of a lot of bad situations. I was finally able to go back to school and to graduate thanks to being on SSDI. I also became a fitness enthusiast since I had read and been told by a number of physicians that exercise was helpful in managing MS symptoms.

Despite being a bullied kid in school, and despite all the problems I had in all of my gym classes, I loved working out at the gym(s) in the city of Boston and I became very athletic. Ironically I was probably in better shape (in some ways) in my thirties than I was as a teenager. I still exercise whenever I am able to and I feel lousy when I don’t make it to my gym. I also have a much healthier diet and I quit smoking in 2004.

Please remember that the subject of “background/life troubles” will probably come up again but I felt it was important enough to deserve its’ own section. If you have any type of debilitating condition and you want to send me notes about things you went though, please do. I have found writing about this to be very therapeutic. I apologize for how long this section turned out to be but writing about it was helpful to me and I’m hoping reading it helps you in some way too. I read recently that writing ones’ life story can be the hardest thing a writer will ever do. I can understand why some may believe this to be the case but, at the same time, writing can sometimes help with lessening emotional pain, albeit gradually.

Hi there! My book is available to purchase at Amazon in Kindle form for $3.99. The print version will be available soon. It is called "It's Not as Bad as it Sounds (my life with MS & Fibro)". -ydc