It affects all of us
In that moment when you hear the bone break, it affects all of us. In a fraction of a second unpleasant emotions arrives. We have been here before. We will definitely be here again. We have become experts in a life with a disability. My disability.
Each of us have our own ways to handle the situation when the bone break. Each have a role. My mom is very practical “Where’s the pain?” “How many painkillers do you need?” “Do you need to go to the emergency?” She is energetic and so cool! My sister backs out of the situation if someone else is taking over. No doubt that I would have done the same thing if it was the other way around. My dad shares his exceptional calmness he always has on him. I myself try to cut off the emotional part of the situation. Sometimes I succeed in cutting the emotions off and sometimes I don’t. And that’s okay. I find it much easier to handle the situation if I just focus on the actual circumstances instead of all the frustrations.
Frustrations that involves powerlessness over the fact that once again I am in this situation. There will be room for the frustrations later and they usually sets in when emergency has calmed down. I am very aware of the reaction it causes in my family, when I announce that I have broken a bone. Discomfort. It is the worst partykiller. All the attention turns towards me. I always try to tell them very calmly that “I broke a bone”, so it will reduce the reaction that happens in them. So hopefully they won’t get so affected by the situation. After all it doesn’t matter how I tell them. They can see right through me, and they are not in doubt of the seriousness in the situation.
I have always said that I am happy that it is me who has the brittle bone disease in this family. There is a big difference from being the person who has the broken bones, or the person who stands on the side line. None of the situations are fun. I find it difficult to be on the side line if someone in my family are feeling pain or sad. It is easier to handle it when I am the one who is in pain. But luckily we get use to any position we are in. We find our own ways to be in the situations. But it is definitely not easy for any of us.
I did not cry in the moment when I broke my pelvis! But I cried when I saw how much it affected my family. I could have been without this fracture. My family could have been without this situation once again. I am sitting with a broken pelvis because I chose to take the risk with my project to try to walk.
When I broke my pelvis it hurt so bad and during the night the pain got worse. The bad energy I am sending out in my home because of the pain will spread to the rest of the family. The day after I broke my pelvis we called the hospital because the pain got unbearable. They send an ambulance and I got admitted. I wasn’t supposed to go to the hospital before the day after because I needed to wait until there was a doctor who had knowledge in OI. But because of the pain we went to the hospital a day before. My dad went to the hospital with me, so that day got torn out of his calendar and replaced with hospital. And my mom took the day after. I know that no matter what happens, they will always be ready to help me. Then we will create the best of the situation. But there is no doubt, that they could easily find so many other things that would be more interesting and fun than taking me to the hospital.
My dad and my sister had made it clear to me, that they were not fans of my walking project. I didn’t listen to them, because I have never held back because of the risk of a fracture. Now I can suddenly see what they meant. It is not because they just say “Too bad. Have a good trip to the hospital!” and live their lives. No – their lives gets affected by it too. Very much so. Plans sets aside. Worries fill their mind. The energy in the house gets affected when I am in a lot of pain.
I know for sure that they always will support me and they will always have my back, no matter what kind of things I decide to do in life. But I also know that it is hard to be a relative to a person with a disability. It took almost 16 years before the fractures finally decreased. My family and I cold finally have some relief from the unpredictability my disability brought into our lives. The unpredictability still kicks in with broken bones nowadays, but not as much as it used to.
We can be the best experts in broken bones, but it will never be fun. So when is enough enough? I don’t have the answer but if you are on the side line of the person with the disability it can also be tough and we need to show respect for that!