decisiontimeat45

[decisiontimeat45]

"I had a dream. Ah, shucks, oh, well. Now it's all fucked up. It's shot to hell." - Warren Zevon, "My Shit's Fucked Up"

I've been distant lately at home. My wife asked me why today. She had been saying something to me 2, 3 times in a row and I don't answer, then look at her blankly.

I feel those are microseizures because I don't hear her.

Those have made me distant because then I start thinking about all this; the surgery, the loss of everything.

I told her this all today, and it started an argument. Not like yelling at each other; more like a debate between someone in denial and someone who is in acceptance of their fate.

My wife is supportive, but when I mentioned the loss of quality of life and death with dignity, she went into like a state of denial.

"You know your fretboard. There's been blind guitar players"

"I know there's been blind players. They also have a level of hearing I can never have unless I'm actually blind. Those dots on the fretboard are to quickly glance and see where I'm at."

This went back and forth for a good 20 minutes. It wasn't resolved. I don't think it will be until it's proven that it's wearing on me more to having to essentially relearn everything another way.

It could very well be the first stage of grief for her. I'm now committed, accepting that this really could be it at 45 and telling her initiated grief mode.

I really don't like the thought of being 45 and looking at this, but there's two options, neither being good.

I watched two people I considered family as a kid suffer from ALS, slowly losing control over everything. I saw what that did to them. I can't do that to myself or my family. They've suffered enough, having to care for me through two surgeries since 2019 and a life-altering one approaching if it can even be done.

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I didn't sleep well last night. I haven't been since the MRI results. It takes a lot of weed to get me to sleep because doctors are too chickenshit to dispense Xanax anymore. I was prescribed that for my anxiety so I could sleep (the typical, safe meds do not mix well with my antiepileptics), but my doctor who was prescribing it left the practice. The new doctors think it will increase my seizures when sudden withdrawal from it will increase them. So, I have to smoke weed to sleep. That's my only option.

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I'm rambling, I know. I just... need to talk to the universe, whether it be some rando or even no one. It's like my entire world has been flipped. Every plan I had is gone. Every damn thing I wanted to do, to see, to experience doesn't matter at all anymore.

I had plans, big plans, for my 40s and 50s. I actually made a plan with my life for once. I was focused, determined to get these things done. One more album. One more show. Publish my tabletop material. Run for city council. See places I haven't seen.

Instead, I'm looking at a life of misery or death. I can't experience things the way I planned or even attempt to try to.

See, I'm somewhere in between depression and acceptance in the stages of grief. Denial, anger, and bargaining happened fast. Denial was me trying to do things I couldn't physically do, and I ended up in pain. Anger was me being pissed at myself for lacking the ability, and being pissed at the following: the previous employer for suddenly closing with 10 days warning, the guy who assaulted me (that's still there, but that's normal), and the employer that the initial assault happened at for not doing a better job sending us applicants (we had dozens of applicants, but they would only schedule one interview at a time and expect us to hire that person). Bargaining was me trying to find a way to make things work while being physically impaired.

Now I'm depressed from being 45 and having to make this decision, and accepting that I have to make this decision, because there is no alternative.

Really, I'm fine. Don't worry about unaliving. That's still not an option.

[decisiontimeat45]

"I went to the doctor, I said 'I'm feelin' kinda rough.' He said 'Let me break it to you son, your shit's fucked up.'" - Warren Zevon, "My Shit's Fucked Up"

About me:

I'm 45, approaching 46. I was diagnosed with epilepsy at 13 from a TBI, and put on a medication called Carbamazepine. I was on that for 30 years. The entire time, not one doctor or pharmacist informed me that 10 years after I was put on it that it could cause loss of bone density.

At age 31, I fractured the transverse process on T12-L4 vertebrae in a fall.

At age 37, teeth started to fracture. The first was on a goddamn soft jalapeño bagel with cream cheese. Not joking. It painlessly snapped on a holiday weekend with no dentists available.

At age 43, I had an employee (I was a chef for 3 decades) attack me for sending him home over his insubordination. He was violating food safety standards, enough to get a health department violation. In the assault, I had multiple broken ribs and another TBI, which drastically increased the frequency of seizures.

The choice was made to undergo an EEG to see where the seizures were occurring in my brain and if we could treat them surgically. To do this, I needed to undergo a stay in the hospital without my medications and have seizures while monitored.

The two seizures I had IN THE HOSPITAL BED fractured my T6 and T7 vertebrae and caused severe issues in my cervical vertebrae.

The cervical vertebrae: I had C5-C7 fused at age 40. Now, there is narrowing of the spinal canal from C3 to T1 both vertically and horizontally.

Essentially, the surgery I will need, either now or later, will leave me unable to move my head much side to side and up or down. If I do it now, those are immediate effects. If I wait, I can lose some fine motor skills in my limbs. The only positive to doing it now is keeping those motor skills fully intact and relieving the cervicogenic headaches I've had since the EEG seizures. That's it.

However, here's where my dilemma comes in:

My career as a chef requires head movement. I have to be able to look side-to-side and up-and-down. I'm not a sit-in-the-office type of chef; I have to be knee-deep in the shit. That just who I am. Even with injuries before, I would dive into it. Fuck how much it hurts. That's my work ethic; eat a cocktail of NSAIDs and go to work.

My hobbies are playing a guitar, painting, throwing a baseball, tabletop RPGs. These will all be affected drastically by surgery, whether it be now or later. I do need to look at a guitar neck at times - every guitarist does at some point. I paint tiny RPG miniatures, which requires fine motor skills and being able to look down at times. Throwing a baseball is not like tossing or playing catch, it's pitching-style. That's a lot of spinal movement, from the neck down. Your head has to turn fully to the side to throw like that; that's ashtray fine with the fractured T6-T7. Playing a tabletop RPG, especially as the Gamemaster, requires the ability to look down; you look down at dice rolls, notes, miniatures, etc.

When I was a kid, I remember being roughly 11 or 12, sitting on the cast-iron steam radiator in my parents' living room. For you kids, that's one of these things.

They got HOT, like burn you if you didn't have a blanket in between, but they kept you warm. They literally sent steam through the system to heat the house.

So I was sitting on that, on a rare instance of being able to stay up to watch the 10 pm news on WKBD Fox 50 out of Detroit. My mom, a nurse, was sitting in her chair crocheting. The lead story was about an attempt to prosecute a doctor for helping patients die.

I asked my mother why a doctor would do that. It was then she explained to me what Death with Dignity was and who Dr. Jack Kevorkian, the doctor they were attempting to prosecute, was and that he was actually doing something great. That a loss of quality of life to medical conditions was a horrible thing and that no one should ever have to live through it.

This was at least a 45 minute long conversation, and by the end, I had decided that I will never live a life where I cannot do things I love due to a medical condition. If my life ever gets that bad, I'm done.

For years, I thought if that day ever came, it was fully on me. But, like Marijuana laws, some states are starting to relax on Death with Dignity. It is becoming accepted.

Now, it feels like I'm coming to that point, far earlier than I thought I would.

My family knows my wishes. My wife has known since we were dating. Our children - 25, 17, and 17 - have known for several years. Everyone understands and accepts this decision, as they all agree with the concept of Death with Dignity.

So what is the dilemma?

I'm fucking 45. I can have the surgery now, and essentially lock myself into DwD now, or not have the surgery and possibly have 5-10 more years before it reaches that point, allowing my mental health decline, knowing there's an eventuality coming, having a time frame. The entire time dealing with the decline slowly. First, my gait and finger dexterity will decline, then it will extend up my limbs until I finally have surgery.

That's IF I can even have the surgery either way. Remember that medication I mentioned earlier, carbamazepine? I wasn't told about the loss of bone density until after my back was fractured. By then, the damage to my bone density was done. We don't even know IF I can have surgery right now, which means I just live in pain, slowly losing the ability to do things.

That's not even getting into the loss of a 31 year career as of this week. I've spent my entire life in kitchens. While I know other things, it's a bit late to go get a degree and switch careers, not to mention if I can even do those by the time I am done with either surgical path, even I can even have surgery. Disability? Like that's going to be a viable option here in the United States much longer. Hell, it's barely an option now, with the first application a guaranteed rejection. We're talking a legal battle just to be declared disabled. In addition...I don't see myself as disabled, not yet anyway. Granted, that could just be me, in total denial. Right now, I can still walk. I can still use my limbs. I just can't do my job because of the health issues.

I call that a big loss of the quality of life any way you look at it. Don't you? Can't do hobbies, can't work, can barely do the things one needs to do in life without pain.

Granted, I may not qualify on any singular condition or even all conditions combined. If not, I plan to fight legally for the right.

Why am I here, on Tumblr, writing this out? I just need to vent to someone other than family or close friends. I don't want to burden them. Yes, I have a therapist, once a week. It helps, but it's not enough. You can only fit so much into a 50 minute session. Besides, I don't have a session this week; my sessions are always on Mondays, and it's Memorial Day. There was no room to fit me in the rest of the week.

I'll probably use this Tumblr to vent about this on and off. Feel free to offer advice, support, etc. It's appreciated, but I cannot guarantee I will follow it. If you just want to talk trash, take your shit somewhere else.

If you read this, thank you. I'll be around for awhile. No, I'm not going to unalive myself; I can't do that to my family. Don't worry about that. I'm fine, I'm clear-headed. This is just a journal of my journey through losing my ability to do things I love, either fast or slow. Maybe I'll find a way to handle this, and it will inspire someone in the future. Maybe it will help someone else understand and cope with this decision later, a decision of theirs or someone they care about who makes this choice.