#KennedysDisease #SBMA #Success #ExtremeSpasticity #AcceptanceWithoutSurrender
I have completed the design of an online QR Code driven scavenger hunt. All that remains is the documentation. I am getting grossly fatigued. I am pulling out all the stops. I am driven to get this fully completed by the Saturday. Three days away. I have a minuscule amount of work remaining — documentation of the game (one paragraph) and to generate the QR codes that will drive the game (very simple).
I received an emotional blow yesterday. A few days ago I was invited to a family event. This is the first such event since I’ve been on disability, almost two years. I was concerned at first, then cautious and finaly elated that maybe, just maybe, I was being reaccepted into the family.
This came crashing down yesterday. We were in a family text list. I have certain members blocked because of their past callous coments. We, the members of the family, were asked how many were we bringing and if we could bring a dish to add to the available food to the event.
In my replied, I made referrence to my gang being a little late because of marching band practice and having to monitor the game until 5 pm. The party starts at 5 pm and I live 1/2 hour away.
Having several of the others blocked, I was not aware of what was going on. Evidently, the rhetoric became venomous and my older sister, the de facto matriarch of the family, put an end to it.
I contacted her directly and asked if my presence at the family get-together would ruin the party. In her response, I inferred, there were several members of the family that preferred I not be there. She was not happy, nor desiring to tell me that. Nor, was I wont to hear it.
I journey on. My immediate family has grown smaller. I am sad, that I exist in a world that is ever-decreasing in size around me, and my family cannot see it in their hearts to reach out to me.
I have asked that I not be included in future family events. It causes too much pain for me. I have been fighting pain on pain to produce this game for the good of others. I seek no monetary compensation from it. If it fields well, intellectual property and future proceeds will be given to my church.
I have huge juxtapositions that are contradictory. People, everywhere I meet, external to my siblings, have nothing but supportive, nurturing comments to offer. My siblings reject me. I cannot reconcile the difference in opinion. This irreconcilable schism is in large one of the motivations for me to write this blog. Not in retribution, but so that I have a voice. If the voice doesn’t touch those that I care most deeply for, then it will touch those whom I do not even know. I want the public to know that having a traumatic disorder is not only medically or physically challenging, but it affects all of your being. Your relationships, finances, mental as well as physical, all are affected by the disease.
If I can’t help myself, then maybe, I can help others.
Jay C. “Jazzy_J” Theriot
Jay C. Theriot can usually be found as “Jazzy_J” on the IRC Channel #ExtremeSpasticity on Freenode.net –> see: irc://irc.freenode.net/ExtremeSpasticity. You will need an IRC Client such as HexChat to connect.