It is often that others don’t understand the frustration of patients and their families. We are told in many southern states there is a choice of breaking federal or state laws. Moving to a more compassionate state, or staying to suffer based on your zip code. People from all over the southeast call with horrible stories of arrest, prosecution and loss of their children to the state. They feel scared and alone. Doctors are afraid, friends are judgmental and who know what will happen if police or child services are called. Here is a letter from one in North Carolina to her friend concerning her health and her fear of police. The letter was addressed to a long time family friend and mentor who happens to work in law enforcement.
I thought if I explained my perspective and fear that maybe it would give you an understanding of why I am who I am now. I love you forever, btw! You will always be my middle school mama, you helped mold the strong woman that I am. Don’t forget that part, and I hope it made you smile like I am! So remember how flexible I am? Its a genetic flaw and every time my joints subluxation there are micro tears. Part of the genetic issue is also keloid scarring, so those tears don’t heal properly. I no longer have cartilage in my shoulders and mostly in the hips too. For a couple years I couldn’t climb my stairs without help. I also had ruhmadic fever which had my body attacking those joints. All of that health crap led the doctors to put me on narcotics as well as all of the antidepressants that have shown help with pain. Nothing worked and I got to the point of having to take massive doses to control pain. That’s another genetic issue with Ehlers Danlos, we process drugs different so it only works on me for about an hour, where you should get 4-6 hrs relief. I was dying, and everyone knew it but what could we do? I called mom crying one night and she told me to smoke a joint. I didn’t ever growing up, I got married and had kids and lived, never experimenting. So I had to find some. Now I’m off all pharmaceuticals and getting healthy, from a plant. It controls the pain, no sickness from narcotics, I’m BETTER! So here’s what I hope you to understand, I could be the next person shot. I’m white and female, so it’s not as likely, but the fear is there. I could be shot by a dealer, cause I can’t buy my medicine at Rite Aid, or I could get shot by a cop as I leave a shady area. I live with this fear. I have friends who have been mistreated for this plant, most of them actually, but we are all just trying to live. I hope that this brings you some understanding as to why I post what I do. I don’t want any harm to come to my protectors, but at the same time I know I can’t call on them if I need. The whole system needs a flip, and I’m hoping to help make it happen. But I still love, it’s who I am. Please don’t be offended. That’s the last thing I usually want.
Submitted by- J.B. North Carolina criminal patient