World MS day

The following post will not be about writing or poetry. It will be personal on a deeper level and I fully understand if you skip the reading of this. As I am typing, I am not entirely sure where this post will lead, but I can share where it came from.

(I added the ‘continue reading’ button, because it turned out to be a long long post)

Today is World MS Day. MS stands for multiple sclerosis, a degenerative illness that has so many different symptoms that it is hard to diagnose. It is also called the illness of 1000 faces.

I grew up with this illness. My mom had her diagnosis in 1980 shortly after the birth of my older sister. My mom was barely 20. Back then, things were different. She had married my dad, not out of love but because it was the right thing to do when being pregnant. They tried making it work. After all, they were young, had a baby, my dad worked a day job and went to school at night. During the weekends, he had gigs with his bands to make a bit of extra money for his little family. It wasn’t easy for them. I am quite sure about that. According to my mom, I was a planned pregnancy. Doctors told her that a new pregnancy with her MS symptoms was dangerous for her health, but my parents went through with it, and that’s why I am here.

But, my mom’s health quickly declined, my dad was overwhelmed with a sick wife and two young kids and so it happened that he left after dropping us off at my grandparents house. At least that’s what I was told.

Tonight, there was a segment on the news about MS and although I agree that there needs to be more information about this disease, I can’t stand watching or hearing about MS. There are actresses who speak about their ordeal too. But let me tell you, that disease does not only affect the patient, but it makes life hell for everyone involved. At least that’s how I experienced it.

I was blamed for my mom’s illness by my grandma, who was very cruel to me – after all, I was the reason her child was sick. I understand that parents need an outlet, someone to blame, but putting the blame on a child is cruel. My mom was deeply depressed and never fought for herself. She was victimized by everyone. She was pitied. And she was spoiled.

I cannot remember seeing my mom walking on her own, I only remember her in a wheelchair being dependent on the help of others. When I was a kid, I was bribed and blackmailed into caring for my mom. I was her parental figure, fed her, washed her, put her to bed… I was told if I didn’t want to do any of those things that I did not love my mother and that she would not love me if I refused giving my help. I craved love, affection and appreciation. I would have done anything for my mother and to be shown love. But my mom couldn’t show any emotions, I guess she needed them all for herself. What I got though, was hate from my grandma, from telling me that I was not worth the air I breathe to that I was a waste of skin, everything was said. Until I started losing respect and began answering in kind as a teenager. It was not nice and I recognise it too, but somehow I understood that I deserved more than indifference or hate and by acting out I got some kind of reaction, for sure.

My childhood and my teenage years were dictated by my mom’s illness. I was not allowed to go out. I was not allowed to have friends over. As much as she was isolated, I was too. And to top it off, I was the black sheep of the family. The more I succeeded in life, the more I was told how worthless I was. It stayed that way long into my adulthood. I was the first one in the family to have a diploma that allowed them to go to university. It didn’t matter, I was still told that I was stupid. I married my first love. It didn’t matter. I was still told he would leave because I was not worthy of his love. I had one-two-three children who were well-behaved and beautiful. It didn’t matter, because they would probably be the same as me as teenagers…

It was never my mother who was cruel. She was just indifferent and didn’t speak up for her kids. She didn’t try to be a better mother for her kids. She didn’t fight and she didn’t show any kind of affection. All this somehow resulted in me not having any relation with her anymore and I never go to visit her. I don’t call. I don’t send cards for birthdays or mother’s day. She doesn’t either. When I have to see her (like on cousin’s weddings) I have close to a nervous breakdown, because I hate seeing her trapped in a body that refuses to do anything for her anymore. I hate it.

Because, in the end, I still love my mom and I still want her to love me back. At the same time, I am not willing to invest any more emotions in a relationship that brought me so much pain and so many issues.

I understand that many people who lost their parents would wish to have them back. And I also understand that my post here is probably painful and disrespectful for them. I understand that, but they also probably had a loving relationship with their parents. I never had.

Everything I have is because I fought for it. I made things happen for myself even when it was hard. And I guess I should be thankful to MS, at least in parts because if life had been different, I would be different.

Nevertheless, this illness dominated my childhood and my adolescence in a bad way. And when I began to work on all those repressed feelings, when I began to address my self-harming behaviours, when I started to dig deep to find some kind of inner peace while accepting my fragile mind, all that could only happen by cutting her out of my life. Often, I think about her. But I cannot change my ways right now.

My mother is 63. She is young. I don’t know if she thinks about me. If her illness allows her to remember her kids.

Seeing documentaries about MS is very hard for me. I see these people who had and took chances in their lives, who had and have a support system. But in those documentaries, they rarely talk about how kids are affected and what it does to and with them.

In my mind I hear people saying “get over it” or things like “you’re not a child anymore, grow up” but the truth is, inside this 41 year old woman there is a broken child, a damaged and neglected child. It is a part of who I am and why I am who I am. The truth is, my mother’s illness scarred me for life.

If you know someone who has this illness, support them without taking any responsibility away from them. If they have kids, offer doing fun things with them, and  make them understand that they are not to blame and that they are loved.

Thank you for reading these many many words. I am quite convinced that these paragraphs could be shortened and written into something more factual and concise, but the topic is loaded with emotions for me. There is rarely any logic when deep emotions are involved.

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writer’s life – 1316 words – reading time: 8 minutes