I have led many lives and I have many more to live, if I am so lucky. I have been blessed enough to have lived a LOT when I was younger before I became so ill with Behcet’s. The biggest lesson I could “teach” anyone who is not currently suffering from severe chronic illness is this –
LIVE AS HARD AS YOU CAN; DO AS MANY THINGS AS YOU CAN; DO AS MUCH AS YOU WANT TO DO AS YOU CAN WHILE YOU CAN. TRAVEL THE WORLD; FIND A WAY TO SEE EVERY BAND YOU WANT TO SEE AND MEET THE PEOPLE YOU WANT TO MEET; JUMP IN WITH BOTH FEET AND DON’T STOP EVEN IF YOU’RE “GETTING OLDER” OR IF YOU ARE ALREADY “OLDER” BECAUSE THERE WILL COME A DAY WHEN YOU CANNOT DO THOSE THINGS.
For me, that day came far too early and unexpectedly. I was in my very early 20 when I got so sick that I could no longer “function” on my own (literally). So if you are 14, 24, 40, 84, it doesn’t matter, if you haven’t done the things you want to do and lived the life you have wanted to live – DO IT NOW. You really never know what is around the corner.
AND to turn that somewhat melancholy note around, “you never know what is around the corner” also applies to those of us who are facing chronic illness – it doesn’t matter if you’ve suffered for decades and decades, you NEVER know what is going to happen in the next moment. If I could teach a SECOND lesson to anyone who doesn’t know that one well enough already, it is just that – that YOU NEVER KNOW WHAT IS AROUND THE CORNER, FOR GOOD OR BAD, FOR BETTER OR FOR WORSE.
And with that, I will leave you with something a little … idiosyncratic. Let’s just say if I could put my “20s” in a music video, it would look something like this … and I pray to GOD (and the Universe) that I will be able to pick up after something that looks just like a void or a limbo that has been the decade between then and now. At any rate, if you know me or you kind of know me at all, maybe “this” might explain a little bit of things. At the very least, you can understand my “confusion” in that “lost decade….”
*QUICK SIDE NOTE: I HAVE TO SAY IT AGAIN AND AGAIN – I AM STRAIGHT AS AN ARROW, MEANING I AM HETEROSEXUAL. FOR SOME REASON HAVING ANY SORT OF “SEXUAL AURA” AND OPENNESS ABOUT AND TO YOU LEADS PEOPLE TO BELIEVE YOU ARE NOT ‘HETEROSEXUAL.’ I WILL ALSO REITERATE THAT I DO NOT REALLY BELIEVE IN ABSOLUTE BINARIES (AS I HAVE ITERATED HERE MANY, MANY TIMES!) BUT WITH THAT SAID, I ONLY CLARIFY BECAUSE I AM SO FREQUENTLY ASKED … AND TO THAT END, I REALLY DO FEEL BADLY FOR MYSELF THAT I AM ONLY REALLY ATTRACTED TO GUYS … BECAUSE .. WELL, THEY’RE GUYS. HEH. I’LL FIND THE RIGHT ONE OR THE RIGHT ONE WILL COME TO FIND ME, AS IT WERE, ONE OF THESE DAYS….*
I hope you are all having a happy and healthy day wherever you are in the world and I WILL BE BACK VERY SOON, despite having a crazy …. who knows how long ahead of me!
❤ Always, Beth
P.S. Both good news and bad = my eye problem(s) seem(s) to be rectifying itself(themselves). My eye pressure is down to 22 in my right eye and my vision has improved about 10x. Although I still have not gotten the angiography I NEED (or needED) and although I now have cataracts in BOTH eyes, my eyes seem to be uveitis-clear and, as per the “evidence,” improving. I desperately need to find an eye doctor who will see me WHEN THE FLARE IS OCCURRING – OBVIOUSLY SOMETHING WAS GOING ON IF I COULDN’T READ THE FIRST LINE IN AN EYE TEST (NOW I CAN READ THE SAME AS I CAN WITH MY LEFT EYE, MARGINALLY BETTER, ACTUALLY) AND MY EYE PRESSURE WAS 30 MEASURED 2X (again, today it is 22). The pain and pressure and photophobia have all subsided which is wonderful for me, but it would have been nice if someone would have “caught the Behcet’s in the act.” More on that to come. Have a good one, yinz.