Little Tasks

A few days ago I saw my pain doctor for our quarterly meeting. We quickly agreed we won’t change the medication. Something is special about this doctor: She always gives me little tasks I have to fulfill until our next meeting. Mostly it’s about walking. This time was no exeption, I am supposed to hike to a restaurant that is located in the woods.

This will be bittersweet. The landscape is beautiful, but it is near my last workplace. And this is a place that holds bad memories.

I will never forget what my boss said to me why he wouldn’t give me an unlimited work contract. “I don’t hire disabled employees permanently. It’s to difficult to fire them.”

At this time, he knew me for a year. I was the one with the least sick time in accounting. I really thought he knew me better. And not everything about me is disabled! It hurt to be told that so bluntly in my face. Something inside of me broke this day for sure.

Collateral damage

There is this woman in my OT group, mid forties, divorced, her daughter is sixteen years old. She has had headaches for years (no exaggeration), until they found a tumor in her brain, which was the reason for the pain. The following surgery had consequences: One side of her face is paralyzed (looks like she had a stroke), and she is blind and deaf on this side, too. She also has problems finding the right words sometimes. And these are just a few of the problems she has to deal with daily.

She had to fight for her disability pension. She fought with her health insurance to get a special kind of hearing aid that sends the noises from hear deaf side to the hearing ear, and was told “You still can hear with one ear, what is your problem?” But these things weren’t the worst.

The worst thing is that her daughter is mobbed in school because of her, like “She’s the one with the retarded mother”. Her daughter often doesn’t want go to school, because she sometimes just can’t deal with those things. Finals will be soon, she shouldn’t miss classes now, and it is too late for changing schools at this time.

So her mother talked to the teacher. He knew what was going on, but said there was nothing he could do, because “These pupils just come from difficult family circumstances”.

So she went ahead and talked to the headteacher. She told him everything and suggested to educate her daughter’s class about mobbing. She suggested to take time for this, like a week. Just the facts, without mentioning her daughter or blaming other pupils.

One week is too long, but a day could be spent on this matter, the headteacher decided. The mother has to provide the teaching material, because this is the first time this school has to deal with this. Her therapist will help her with this in her single OT sessions.

Unfortunately, she will need every help she can get in the next time. A MRT scan two weeks ago showed that the tumor in her brain started growing again. After the first surgery she had been told the tumor had been removed completely. But #cancerisanasshole and doesn’t give up that easily. The next surgery is scheduled for August.

I really admire this woman. She takes care of her appearance, and her problems with finding words doesn’t keep her from talking nonstop 😄. She likes to laugh, is always willing to help others and refuses to give up. Sadly, her story is no exception.

My inner child

When I am feeling extremely anxious and tense, I know my inner child wants to be heard. If I schould describe my inner child, it looks like on the picture above.

This picture was taken shortly before my time in Kindergarten ended, I was six years old. I remember this pinafore dress very vividly, it was made from denim and had embroidered flowers on it. The photographer wanted me to laugh in the camera, but I just couldn’t do it. I had gotten my hearing aid shortly before, my world was upside down.

My grandmother said: “The hearing aid must be hidden!” And so it was always hidden behind my hair. Dear inner child, forty years later you will have a fancy, small in-ear hearing aid and a short hair cut. And you will not care if other people notice your hearing aid or not. You even will speak openly about your hearing loss when meeting someone new, to avoid misunderstandings. You will not be ashamed any more.

I had just recovered from a traumatic hospital stay, resulting in a adenoidectomy. The following tests, which confirmed my hearing loss, and the process of adjusting my hearing aid left me frightened and full of unsecurity. Dear inner child, it is not your fault you cried from fear so often. The grown-ups didn’t handle things very child-oriented. Later, when you are an adult yourself, you will be able to stand up for yourself, this will make everything easier to bear.

Lots of new and strange things had to be processed. I don’t like the hearing aid, everything is so loud. Why does my mother make me put it on every morning? Why do I have to go to this man once a week, who makes me hum like a bee and speak and repeat random words? Dear inner child, you will get used to the hearing aid and understand how it can help you. You will be grateful that your mother fumbled this strange thing into you ear every morning. In hindsight, you will be thankful for the hours spent in logotherapy – it will be your choice if let other people in on your hearing loss, your spelling won’t give you away.

Meanwhile, the grown-ups tried to keep their worries and conversations concerning my future hidden from me. Of course this didn’t work, I felt that something was going on… and that it was about me. Dear inner child, your parents and grandmother are at a loss right now – they don’t now how to help you, because they don’t know anything about hearing loss in children. They will do their best, but they will also make mistakes. You will have to find you own way.

I was very aware of the fact, that I was different. I didn’t want to be different, I just wanted to belong to the other children. Dear inner child, you will have to come to terms with the fact you are not like most people. Some doors will stay closed because of this, others will open. The pain will never go away completely, and some people will hurt you. And there will be other people, who will help you.

I was very anxious at this time, and I regressed. I wanted to sleep with my parents at night again. My mother had to be where I could see her. I was extremely shy around other people and refused to greet people I saw for the first time. Dear inner child, sadly I don’t exist yet. Nobody will stand up for you like I will. But this is in the future. But I am here now, and you can come to me everytime and tell me what is wrong. I am your future self, I wouldn’t exist if it weren’t for you. And I want to tell you this:

• it is okay to feel bad or anxious. Every human goes through this, you are not alone.
• even grown-ups are at a loss sometimes. You can believe me, I am grown up.
• YOU DID VERY WELL! You worked so hard, and this made my life so much easier.

And when you feel tense, overwhelmed and don’t know what to do – you can vent to me, I know you like noone else does. As all adults do, I may not always have a solution at hand, but we two are am experienced team and go through this.

Yours

Birthday wishes

A german birthday card. On the upper half, a cat holds a mouse and a german idiom is quoted. “Ein paar Mäuse tun immer gut”, “It’s always good to have a few mice”. Meaning “It’s always good to have some money”. In the lower part is an extra envelope in which you can put bills. The german “Gönn’ dir was!” means “Give yourself a treat”.

A few minutes ago you let me know that there a only two pieces left of the cakes I made yesterday, and that they were delicious. I was very relieved to hear this, and I gave myself a pat on the shoulder for getting through Yesterday.

This morning I gave you a birthday card with some money in it. You wanted money, because there a some things you need to buy for the upcoming fishing/model building season.

I wish I would have been able to put more money in this envelope, but of course money is tight since I stopped working. You never complained about this.

I wish I could be there for you more often, but I am so busy fighting my demons. You shouldn’t need to console me when I am crying, repeating “I want to die! I want to be with Sammy!” for hours. You shouldn’t have to worry about me, because I have anxiety attacks and want to self harm. You shouldn’t need to think about how my walker fits best in the car. You shouldn’t have to be alone for weeks, because I need another inpatient stay on the psychiatric ward. But you are very loyal to me, your family and friends. You do what you can do.

I wish I could share the burden you have to carry. I see how tired you are when you come home from work, and at home there is more responsibilty to bear now. And there is your wife, always tired, who barely manages to cook a decent meal.

I wish I could make all of your dreams come true, you deserve it. We will have to settle for the little things, though. But you can be sure of that: I am so very grateful for everything you do for me. And I will keep on trying to make very many little things possible for you.

Brave new world?

Source: pixabay.com

This refers to Germany, I hope things are handled better in other parts of the world!

We don’t have children, but my sister-in-law is expecting her first child in August/September. Somehow I found myself reading blogs about the integration of disabled children in the last weeks. To sum it up, integrating a child with special needs is very difficult in Germany, despite the fact that there are laws that should help with that. The pressure to adapt to the mainstream society is very high.

The discussion starts with prenatal screening. Yes or no, which kind of testing should be done… I remember when my friend was pregnant with her daughter, ten years ago. My friend was by no means a young mother, with of course can cause problems. Her colleagues (women, all of them mothers) took it for granted that she would have an abortion, should the tests reveal any disabilities. For my friend, there was only one reason to abort the pregnancy: If the child would not be able to live on its own.

Few support the opinion that a life with disability can be a good life. And those who do often met disabled people and saw for themselves that joy of life doesn’t discriminate. One of the colleagues who opted for abortion suffered a stroke one year later. She had to stop working and now is very limited in her everyday life. I can’t ask her if the kind of life she has now is still as worth living as it was before. It is a fact that most disabilities develop later in life – life is always life-threatening.

I notice that disabled persons more and more are pushed to the fringes of society. Possibilities of integration in school and work life become less.

Being a disabled person myself, this makes me worry. My life was never easy, but I had an have fun. I never had an empty or meaningless life. Of course I need help from my non-disabled enviroment. But this should be a given, because everyone can become disabled.

Raising a disabled child these days causes many struggles and justifications. I don’t know if I would be strong enough for this, I wish nobody had to go through this. I am very doubtful our society will leave this path of exclusion. But I still have hope, against all reason.

Visible and invisible disabilities

 

What I learned over the years:

Aus eigener Erfahrung ein paar Beobachtungen:

• An invisible disability (as my impaired hearing or depression) easily can be hidden from the people around me. Sometimes this is a good thing, because nobody feels the need to comment on it or ask questions.
• The people around me, especially those I don’t see very often, constantly need to be reminded of my invisible shortcomings. This can become annoying for both sides and requires lots of empathy from everybody.
• A visible disability (I use a walker to help with my back pain and unsteady gait) is noticed by everyone I meet. But the response to this is not always pleasant or appropriate.
  – Helping others is great, but please ask first, and accept a “Not, thank you” without bad feelings. I get very upset when a stranger touches me without warning, or if my walker is carried away without asking for consent. I am not your good deed for the day! And doing what I can manage without help is so important to me, even if it would be so much easier with help.
  – It happened more than once that people told me their own tales of woe, or those of a relative, or of somebody they know, or whatever that comes to their mind when they spot my walker. It is not important to them, if I want to hear it or not. I am very aware of the fact that disabilities can cause concern, but I am too busy with my own problems. I can’t bear other peoples problems, too.
• When in doubt: Not saying anything is better than using standard sayings like “Aren’t you too young for this?” And: Nothing is wrong with my intelligence, speak as normally to me as possible.

Some things may sound ungrateful, but helping others is a thin line. Making the life of another person easier, or invading his/hers personal space are two different pairs of shoes. And a “No, thank you” does not mean ingratitude. Disabled persons are very thankful for everything they still can do on their own despite their impairments. Just think about how you would like to be treated in this situation, and you will often do the right thing.