Thank you

My last post was about my currently very uncertain health condition and it was written at a time when I was very scared for my own continued existence, not to mention my ability to keep walking and writing.  Immediately after I posted it, I started to receive emails from readers with concerns and well-wishes, and it helped immensely to improve my outlook in general.  

Firstly – a heartfelt Thank You to all of the people who have sent in their messages of support or offers of assistance.  I am extremely fortunate to have such a large network of people who care about me.

Secondly – while I still do not know the nature of the numbness and tingling and lack of sensation that I am still continuing to feel, the symptoms have lessened in some places and changed in others to be more consistent with an injury rather than any sort of dangerous degenerative disorder, so while I am not certain of anything yet, the probability that I am facing something that will kill me seems to be reduced along with my fear.

I am not out of the woods just yet, and I have many more appointments with specialists yet to come, but the prognosis is a lot more hopeful and the likelihood of a full (or nearly full) recovery is much higher, which has left me feeling a lot more positive about things in general.

I may yet be facing a potentially dangerous surgery, but for some reason that is a lot easier to face than some unknown demyelinating disorder, which was the original tentative diagnosis.

Thank you to everyone who has chosen to be a part of my life – you are the reason that my life continues to be as awesome as it is.

  • Rant

On mortality

“Well, we think that it’s equally likely that you have some sort of transient condition that we don’t fully understand that will resolve itself on its own, or that you have one of these six syndromes with similar symptoms, five of which are degenerative, untreatable, and fatal within a year.”

This is not the sort of thing that you want to hear from your doctor… but it is exactly what I heard when I took myself to the emergency room with some numbness in my extremities two weeks ago.  I have to admit, it’s kind of been fucking with me since then and I am good and fully scared.

I have fallen a bit behind on my posts and in answering emails lately – and this is the reason why – I do apologize.  I am trying to get caught up again beginning today.

I’ve never experienced having a doctor tell me something like “there’s a 50% chance that you’ll be dead within a year” before, and I have to say, it’s not one of my favorite things.

It does sort of put a lot of things into perspective though… 

I’ve known for some time that I would not likely have a terribly long life span.  I’ve got a family history of heart disease, mental disorders, and hypertension. I have been involved in several auto accidents (none of which I was found to be at fault for) – at least one of which resulted in serious long-term injuries that still bother me almost daily and are a cause for chronic pain, and all of these things are known to reduce lifespan.  I figured it would be unlikely that I would live to see 80, but I was okay with that.  I’ve seen what my grandmother (who is now 98) has gone through in recent years, and her quality of life is not very good.  In fact, for the past two years, every time I’ve seen her, she has said at least once that she is ready to and even wants to die.  “No one should have to live like this…” she has said more than once.

However – and this is a pretty big thing – I never even considered the possibility that I wouldn’t live into my 70’s or better, and that should still be decades away.  Being told that there is a 50% chance that I might not live to see another birthday after this year was a pretty big blow – one which I am still processing.

I had a will, of course – it would be pretty irresponsible for any parent not to – but it hadn’t been updated in a while, so I’ve done that.  I made sure that the beneficiaries for my insurance policies were properly set, and I had to change my emergency contact information as well. That was pretty rough too.  I had had my emergency contact set to be my former partner who broke up with me earlier this year. I even had her listed as a 10% beneficiary for my life insurance policy – I don’t remember doing that, but it’s perfectly in line with something that I might do.  At the time, I wanted to gift her with enough money to pay off her student loans if I should happen to expire accidentally while we were together. Now – I don’t even want her at my funeral.

My current partners are all trying to be supportive, but there is really nothing that they can do – nor is there anything I can do except to sit in my discomfort and wait for something to change.  This is a very difficult place to be. I am doing my very best to take everything in stride and to be hopeful – by telling me that there is an equal chance that it is something that they don’t understand or something on the list of scary-ass-shit, my doctors were basically telling me that they have no idea what is going on or how to treat me.  That is frightening, but if I can alter the narrative a bit and just cling to the notion that they don’t know what is wrong, it is slightly less terrifying. Slightly…

It’s really hard to say “my life is awesome” when you’re living with something like this hanging over your head, but it is still true.  I am loved by many and I know that my passing will be mourned, but I am still hopeful that they won’t have to mourn my passing for decades yet to come.  I will admit to stress eating and making bad decisions based on the idea that “either I’m fine and this won’t really hurt me, or I’m dying anyway and should enjoy the time I have left.”  I suppose I am still a hedonist at heart.

I have confronted my mortality once again, and I really don’t like it, but I am happy in general with the life that I’ve led, the people that I’ve chosen to keep in my life, and the contributions that I have made.  I would really like another century or two of healthy and happy life, but if my card gets pulled tonight, I’d feel as if my impact on the universe has been a net positive, and I can live with that for now – and hopefully for much, much longer as well.