IN A FEW DAYS I TURN TWENTY-EIGHT: MY BODY IS ACTUALLY REALLY, REALLY, REALLY SICK

I am not sure if I have been able to accept the fact that my body is actually really, really, really sick: sicker than I ever have been in my life before. It still has not sunk in that it will never again be how it used to be up until my mid twenties...I guess after fighting to survive for so long and not knowing anything going on until just recently this last year, and just coming through the last few months of the trauma, it is starting to sink in.

Right now I am living with basically three kinds of Ehlers Danlos Syndrome and disease, Raynaud's Disease, brain injury, Functional Neurological Disorder, non epileptic seizures, the anxiety disorders, PTSD, and the aftermath of years of multiple types of abuse. I have chronic insomnia and pain. I cannot take almost any medication or supplement because of my super rare adverse drug reactions. My entire body is extremely unstable, easily injured, fatigued, and often in a seizure state. I cannot walk or stand long due to blood pooling and part paralysis or seizures. Sometimes I am hit with pain so badly I am not able to move for large periods of time. The Raynaud's Disease in my hands and feet is so painful that I often cannot feel, hold, or drop things along with severe weakness. If I do literally anything at all using my hands, even for a minute, such as any daily living activity, it starts and I know I will be in extreme pain the rest of the day. Sometimes I have to skip a day of anything because of the last day or two of just doing anything basic due to the extreme pain and fatigue from those times. I feel like my body is rapidly accelerating towards death. Yet I do all I can and try to keep living.

I want to raise as much awareness as possible so less people will suffer and more care will one day be served.

In a few days I turn twenty-eight. I am not any condition or illness that is permanently attacking my body while here temporarily on earth. I can still live a life of peace, hope, and joy amidst the terror, grief, and pain. I want to experience a deep, genuine, healing love, and to kiss and be kissed for the first time. I want to wrap my arms around more people and have more arms wrapped around me. I want to keep laughing. I want to let myself fully grieve and live in the most peaceful and comfortable way I can. I want to look at the stars and lay under the night sky while I thank every dark moment for bringing me to every part of who I live, survive, and breathe as today. Maybe the end of me and the beginning are really the same.

- RKD

01-07-25