#KennedysDisease #SBMA #Success #ExtremeSpasticity, #AcceptanceWithoutSurrender
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I just embarrassed myself.\u00a0 I promised to be honest on this blog and so I feel I must.\u00a0 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.
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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.\u00a0 I was impatient and should have waited for assistance, but didn’t.\u00a0 I ended up hurting myself.
I am sure I will redouble my efforts in the near future.\u00a0 As for now. I just want to hide from everyone.<\/p>\n\n\n\n
My beautiful wife doesn’t feel adequate.\u00a0 She is comparing herself to others that are thrust into the caregiver role.\u00a0 She doesn’t believe she is handling the situation as well others in our predicament.<\/p>\n\n\n\n
I wholeheartedly disagree and implore that she look at the situation holistically.\u00a0 Most people in her situation do not have as much to deal with.\u00a0 This is not just based on my ability\/disability, but many other factors.\u00a0 <\/p>\n\n\n\n
For one, my age.\u00a0 I will likely be on this earth for another forty years.\u00a0 Not, a short time to deal with these issues.\u00a0 I still have hopes, wants and desires that I will likely never fulfill.\u00a0 These weigh heavily into the equation.\u00a0 She has a successful career that we cannot afford for hear to walk away from.\u00a0 It would be nice for her to be able to be at my beck and call, but she is not able to do that.<\/p>\n\n\n\n
Others have family members or friends that visit and provide input.\u00a0 My wife and mother-in-law are largely, my only source of interaction with adult humans.\u00a0 The rest is down through the anonymity of the Internet.\u00a0 I cannot get out and visit with people.\u00a0 When I try to, the toll on my health often makes the visit untenable.\u00a0 The end result is she is the sole pipeline I have to humanity.\u00a0 I don’t listen.\u00a0 I need her to listen to me, as she needs me.\u00a0 I don’t provide her with the ear she so needs and deserves.<\/p>\n\n\n\n
I am being a vampyre. I suck the life out of her and give little but agony in return.\u00a0 It is not she that is not sufficient, it is I.<\/p>\n\n\n\n
I hate what I have become.\u00a0 I accept it, but I still despise it.\u00a0 My neuro will be administering Botox, come this Friday.\u00a0 The emotional cost could be severe.\u00a0 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.\u00a0 Frankly, I have been above level 5 pain consistently for over two months.\u00a0 My resolve is wearing thin and I don’t know how much longer I can tolerate what I am currently going through.<\/p>\n\n\n\n
I am praying for the best.\u00a0 This Friday is the first of four injection sites.\u00a0 WE are doing the worst location first.\u00a0 The procedure will take some muscles out of the equation semi-permanently.\u00a0 I pray we are doing the right thing. I can’t bare the thought of becoming a larger burden on my wife.<\/p>\n\n\n\n
As we used to say long ago, “This life sucks.\u00a0 Can we start it over?”<\/p>\n\n\n\n
Pray for my wife.\u00a0 She doesn’t deserve what I am putting her through.<\/p>\n\n\n\n
In Christ,
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Jay C. \u201cJazzy_J\u201d Theriot
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