5 Things I Learned From My Disease

Today, exactly one year ago, I learned I have Limb Girdle Muscular Dystrophy Type 1B. This is a rare disease that attacks the muscles in your body, makes them waste away and replaces them with fat tissue. Including the heart.

And I am a writer.

At the time, I was working as a Personal Trainer (of all careers to choose…) and Sports Nutritionist. When I got THE call, I was in the middle of a workout I wasn’t supposed to be able to do.

What followed was a rough couple of months: I decided to get a divorce and move away with my one year old daughter. I had to rethink my entire future. I had to come to terms with the fact that my daughter could have the same disease. That she would have to grow up with a sick mother, like I had. The feelings of guilt and hopelessness were overwhelming.

It was everything I had never wanted.

But I’ve never been one to back away from a challenge. My eyes are always focused on the future, not on the past. I am resourceful and resilient.
And here’s what I learned:

  1. Never ignore that which feeds your soul

When I was four years old I taught myself to read. Then I proceeded to use my new skill to teach myself English (I am Dutch) with a little help from the TV. I would listen for a commonly used word and then find a commonly used word in the subtitles. My first English word was ‘and’.
When I was five years old and had learned to write, I wrote my first poem.
At 12 I was invited to recite my poetry on radio. At 14 I starred in my first professional play, with critical acclaim.
The point I’m trying to make is that I was born creative and dramatic. What was I doing working as a Personal Trainer? Well, I was also born into a very uncreative family and I didn’t believe I had an artistic bone in my body.

I felt like an imposter, about to be found out.

So, when I married an American fine artist and it was obvious his artistic vision surpassed my own, I took it as a sign I was full of it and stopped writing and acting altogether.
I started pursuing the complete opposite: anything physical and tangible. And I was good at that too, which further proved my silly point:

I am not creative.

I quickly became someone I didn’t recognise. Focussed on things that didn’t really make me happy. I had tossed out that which made me float two inches above the earth and I settled for something I found dreary and exhausting, simply because I didn’t believe in myself.

Finding out I was going to be incapable of following down that dull road in the near future, was the best thing that could have happened to me. Because the moment I realised my mental faculties would be all that will remain, I finally dared to embrace who I really am. A writer. An actress. A fiercely passionate being with immeasurable depth of feeling. And the need to express it, not in person, but in my work.

2. Beauty is all that matters

Beauty can be found in anything and is different for everyone. 
To me, beauty is in specific kinds of music, a powerful selection of beautifully crafted sentences, the perfect expression on an actor’s face, the guitar riff that aligns with a vision I had for a film script I am working on, my favourite perfume inspiring feelings of perfect femininity when I wear it.

Since my diagnosis, all I strive for is to live in constant beauty. It’s all I seek any more. Time on this earth is short and you have no idea just how short it can be. For me it will probably be shorter than for you, but we can’t know that for sure.
Don’t waste your time here on sub-par experiences when you can have the best of the best. So as long as you dare to take what you really want.

Beauty is all there is.

3. Respect your limitations

I want to do everything, all the time, always. But I can’t, because my heart will act up and then I won’t be able to do anything for days. Or my body will be exhausted for the next four days.
So I pace myself and it’s a skill I really had to teach myself, it doesn’t come naturally.
In doing so, I have become much more productive, despite doing ‘less’.

Even though your time on this planet may be short, still look at it as a marathon. Slow and steady wins the race. Don’t burn out before the finish line.

4. But you don’t have time for complacency either

I am also deeply lazy and it is hard for me to pull out of a funk. Together with doing too much, this created a vicious cycle. I would do far too much, my body would stop working properly, it would take days to recover and then I wasn’t able to get myself going again. Then I would feel guilty and do too much. Ad infinitum.

So, I also had to combat the laziness as it was part of my problem. To do this, I work with timelines and deadlines. Yes, self-imposed, juicy deadlines.

On my door, I have pages and pages of goals I want to accomplish by certain dates. My biggest dreams are ten years into the future. Smaller goals will be accomplished by the end of the year. And anything in between.

I have an additional page with a list of tasks I need to complete daily and weekly in order to reach my long term goals.
Every day before I get to work, I stand in front of my door. I read my long term goals to remind myself I can’t just sit back. There are things to achieve and they’re BIG. Then I read my daily tasks.
I have also put up daily motivations, like “Keep your house clean and clutter free. This will make you feel better and will maximise productivity”. Because I’m the one who said it, I actually listen.

5. Don’t stop there

Now that I have fully embraced my creativity, I don’t stop at writing and acting. I play the guitar, I sing and I take dance classes (yes, really, because screw my body).
I don’t have a musical bone in my body and that is not a silly belief — it’s so true. But I don’t care any more. I love music, I love singing (opera, preferably), I love the Paso Doblo. And while I may never be a rock star, I sure as heck won’t settle for off key singing.

Hopefully, you don’t have to discover you have some horrible disease in order to learn these valuable lessons. Take it from the person who got lost and then found their way back.

Until next time,