Some of you may or may not know much about my big sister, Heather. She has a rare genetic disease called FOP or Fibrodysplasia Ossificans Progressiva. This is where muscles and ligaments turn to bone. It only affects a person’s mobility. There isn’t any intelligence deficient or changes to her being a big obnoxious sister. I have always seen her as my sister first and a person with a disability third or fourth down the list of adjectives and titles. Such a concept seems to be difficult for others to wrap their heads around. As she approaches her next journey, I find the struggles others have the idea that I can treat her as a sister not an invalid to be more than frustrating and down-right angering.
She’s dieing. It’s pretty simple. Eventually, when you add more health complications to the top of FOP issues, death will come. Honestly, though, that’s what is waiting for all of us. We just have different paths getting there and different arrival times. She’s been in Hospice care for about two months maybe three at this point. The past couple weeks have been spent in the Agrace Hospice Inpatient unit (Agrace has been amazing!). Heather hasn’t eaten anything for a little over a week now. She’s had very little water. They’ve just been trying to keep the pain levels managed. A week ago she was in so much pain that she said she wanted to die. Yesterday, she clearly said “I don’t want to die yet.” She hasn’t been a solid spiritual place the last couple years. She’s only 31 years old. Coming to terms with death could not be easy with those variables. However, she’s known this was coming for a while now. She allowed fear to run her world and keep her from growing. Something she swore over and over again she wouldn’t let happen.
I want what is best for her. I want her to be as OK and ready for death as anyone can be. I want her to finally find a peace and calm that takes her away from the endless pain. At the same time, I wish she would stop fucking around on my parents. They have dealt with so much of her adolescent crap and mistakes without every complaining or giving up on her. People make mistakes and my sister made enough for three or four people. It’s always been about her in her own mind. She still can’t seem to wrap her head around what her decisions do to our parents. This just seems to be another, grander, way of saying fuck you to my parents. I want Heather to be ready and at peace, but I sure as hell don’t want her screwing our parents over again.
But you can’t say these things to friends or people who ask. All you get back is “This is a part of grief,” “Pain makes people do crazy things,” and “These feelings will pass.” I’m sure that all of that is true in one way or another. However, undermining my own experiences with my sister and family dynamics by making it sound like I’m just lost in emotions and have no real grasp on the reality of the situation is insulting. I frankly know my sister better than any of the aids she’s ever had or the friends who come in and out. She’s been there my whole life. For a few years I was the only one in our family she spoke to. Trust me, there is more to anything with her than what you expect.
But that is the case with everyone and every family. We can try and be supportive and say the right things to those friends dealing with death or illness, but we’ll never know the whole story. We’ll never know if our words or actions are of help or are patronizing crap.
She will always be my big sister and I will always treat her as such with all the love and antagonizing that goes along with that.