I believe with my entire being that I would not be alive today if I didn’t love my daughter more than anything else in this world. I went through hell for several years with a rare brain infection, that took over 2 years to diagnose and 4 years to get under control. When my Neurologist finally discovered what was going on, he gave me a letter that stated I was a danger to myself and others. At that moment, I knew I had to give up custody of her to protect her. That was the worst pain I have ever felt- it crushed my soul.
This long nightmare was incredibly difficult to navigate. I lost everything. I could not function. I tried to find help and could not- I would have been comforted by even a little compassion but I didn’t find that either. I was denied disability because the Judge did not understand what I was diagnosed with despite my world-famous Neurologist defining it extensively. Due to the rarity of the illness, this happened everywhere I turned. I lost friends, the city didn’t help, Medicaid was a joke, and my young child certainly couldn’t understand what was happening to her once-thriving Mommy. The only reason I didn’t kill myself was I couldn’t do that to her. But I have to say, I wanted to every single day. That is how bad it was.
This diagnosis (Neuro-IRIS) essentially meant that my blood-brain barrier wasn’t functioning and every virus that I had developed an antibody to was attacking my brain. One after the other. Sometimes more than one at a time. Some of these viruses attacked the brain in such a way that they mimicked various mental illnesses.
This illness destroyed every aspect of the life I had worked my entire life to build. Obliterated is a better word.
The dust has settled and as I pick up the pieces, try to repair my relationships, health, finances, work, etc. I find myself in a unique position, I can understand what
the mentally ill go through… and it is brutal. The help that is needed, not only for the ill but for the families is simply not available. This needs to change. I have committed myself to doing everything that I can to assure that it is. Thus, Luv Our Madness, a non-profit was born. I am currently working on collections for mass retailers where the profits will be donated to this cause.
If you would like to help, please click on the button below or email me directly.