Valentine's Day was such a struggle for me.
Tracy left Oct 27th. We took his wheelchair on Halloween rounds with us so he would be "with us in Spirit". ( I know, totally distasteful but at that point...no, no excuses. It was just us being us). Then Thanksgiving with the family cooking his favorites. Such a big deal for Tracy. Then Christmas! He LOVED watching everyone open all their gifts. He LIVED for that moment of surprise and joy!! He was always sooo proud of himself he often couldn't wait to give his gifts and would give them early. Then New Years! A time to remember good times and make plans for the future... ugh. Then his birthday Jan. 30th. We celebrated by eating what he loved, going to the movies and music concerts. Whew...done.
Wait- Valentine's Day. awe- come on!!!
Gesh! How many is that in 3 months?
But, I thought so naively, if I can just get through this, the worst of all the "first holidays without", I will be on easy street. I will just roll along because honestly Tracy didn't care too much about Easter as he thought it a silly tradition with eggs and bunnies having nothing to do with Jesus at all and he wasn't even religious he pointed out.
(Bunnies laying eggs he would laugh!)
I actually thought I would feel much better having survived the dreaded Valentine's Day but I am experiencing a tsunami of frustration and wild emotions instead.
The feeling that I should "get on with life now" stings. I feel as if the last 4 years of what I have learned now is not supposed to matter because my point was to save Tracy and he is no longer here so move on. But it is THIS exact shocking truth that suddenly makes me realize this emotional angst I am experiencing doesn't have to do with
Tracy Boettcher.
It has to do with the fact that what I believed my whole life until a year after we were diagnosed is ABSOLUTELY NOT TRUE and no one is accountable for that. What I learned in the last 4 years is in exact opposition to what I had been taught and now no one will believe me because Tracy chose hospice.
Now that I am trying to build my new life I have no footing. I have to review everything I believed when it comes to the world and information. I am/was not a cynical person before ALS. I don't want to be cynical now. I want to be informed with information I can trust. I dealt in people and ideas and happiness before- not medicine, money or politics.
What hell I find myself in now.
Since we had no direct need for the medical world pre ALS I kind of passed off the conversations about the health industry, insurance, pharmaceuticals. It's not that I believed or didn't believe, it's at that point I didn't care THAT much. Well, now that I have seen the direct results of THAT not caring enough, it makes me feel the need to focus on it more seriously since I ain't getting any younger= health issues at some age most likely and not wanting my children to be responsible for them.
Then there is the REAL issue-
No one actually believing what I found out is true. Honestly, I think that is the crux of my problem. I hate to admit it because it's such an ego driven sounding idea but it doesn't effect just me (in my view). I don't care if you like my hair or think my art is ugly. But after what we have been through, I can't help but feel for those who are being diagnosed daily with ALS and all the misinformation they are given in the most horrible crazy ways and the unnecessary suffering it causes during an already horrific time.
I know, I know- not my problem. I served my time. I lived the good fight. No regrets, blah blah blah...
That has nothing to do with the reality that is foisted upon us all. I have had dozens of people contact me that have been given death sentences of cancer, MS, Alzheimer's, and more asking questions of me because they heard we accomplished this or that. I have ALSers referred to me by well meaning loved ones looking for help and hope.
There is NO LEAVING the trenches. It's life.
If it wasn't for those generous souls I found that healed themselves of all sorts of deadly incurable diseases, our short journey would have been a lot shorter and much more miserable. But "people" don't believe me now that Tracy is dead and gone. What good is my information? Why bother sharing it? I think it's This feeling of throwing away 4 very important educational years of knowledge "because that is no longer my life" that is also painful.
I COULD try to extract myself from all that but it doesn't change the fact that I have family members and friends who are suffering right this minute with life ending issues. I myself need to deal with the reality that I have absolutely no faith in the medical world should a serious health illness arise for me because I am very non typical in reactions to medicine. I am probably screwed then and what does that mean for my kids since Tracy isn't here?
Crap. Now not only do I have to heal from losing the love of my life, my friends, city, home, business, money, independence, now I have to find a way to trust a world I never had to be part of before but I am forced into. I spent 4 years learning a new way of life. It often feels to me as if people expect that to be OVER. Don't beat a dead horse (or Jackass) I am encouraged. Take time for myself I am told.
How do I take care of me without other people? It's an oxymoron isn't it? These other people have been there for Tracy and I every step of the way.
I told Tracy almost daily and I absolutely believe 100%. There is NO he and Me. Only WE. We are ONE. When your children leave your body they are still OF YOU. THEY BELIEVE they are independent. That doesn't change the fact that without us they are NOT in existence. THEY ARE US. Physically, absolutely, factually. Our egos make us want to believe we are separate. We are taught independence. But the truth is we are all in this together.
I can cut off a rotting limb to save myself- but how many times before it's too much?
I don't see a way at this point to move forward without carrying with me all I have learned from the past. Isn't that how we grow? But what if what I learn is in conflict to the beliefs of those I love? Is having people believe my truths important and to whom?
How does this relate in any way to me creating a life?
Hell- I don't know. I am surprised as anyone. I thought that once these list of "firsts without" took a breather I would relax and begin to heal.
Not feeling it so far.
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