#KennedysDisease #SBMA #Success #ExtremeSpasticity, #AcceptanceWithoutSurrender
I just embarrassed myself. I promised to be honest on this blog and so I feel I must. I promised to post the bad as well as the good to give an appropriate impression of the thievery of which this disease is guilty.
My current thoughts are that I should not bother leaving the house alone ever again.
I just injured myself trying to get to a church function. I was impatient and should have waited for assistance, but didn’t. I ended up hurting myself.
I am sure I will redouble my efforts in the near future. As for now. I just want to hide from everyone.
My beautiful wife doesn’t feel adequate. She is comparing herself to others that are thrust into the caregiver role. She doesn’t believe she is handling the situation as well others in our predicament.
I wholeheartedly disagree and implore that she look at the situation holistically. Most people in her situation do not have as much to deal with. This is not just based on my ability/disability, but many other factors.
For one, my age. I will likely be on this earth for another forty years. Not, a short time to deal with these issues. I still have hopes, wants and desires that I will likely never fulfill. These weigh heavily into the equation. She has a successful career that we cannot afford for hear to walk away from. It would be nice for her to be able to be at my beck and call, but she is not able to do that.
Others have family members or friends that visit and provide input. My wife and mother-in-law are largely, my only source of interaction with adult humans. The rest is down through the anonymity of the Internet. I cannot get out and visit with people. When I try to, the toll on my health often makes the visit untenable. The end result is she is the sole pipeline I have to humanity. I don’t listen. I need her to listen to me, as she needs me. I don’t provide her with the ear she so needs and deserves.
I am being a vampyre. I suck the life out of her and give little but agony in return. It is not she that is not sufficient, it is I.
I hate what I have become. I accept it, but I still despise it. My neuro will be administering Botox, come this Friday. The emotional cost could be severe. Their is a chance of complications as one of my Kennedy brothers has so informed me, and pointed to a clinical document that condemns the process for Kennedy Patients. Frankly, I have been above level 5 pain consistently for over two months. My resolve is wearing thin and I don’t know how much longer I can tolerate what I am currently going through.
I am praying for the best. This Friday is the first of four injection sites. WE are doing the worst location first. The procedure will take some muscles out of the equation semi-permanently. I pray we are doing the right thing. I can’t bare the thought of becoming a larger burden on my wife.
As we used to say long ago, “This life sucks. Can we start it over?”
Pray for my wife. She doesn’t deserve what I am putting her through.
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.