Finding the Path

Over the last couple of months – and over the last month in particular – I have started to REALLY realize how damaging the effects of “losing” a decade (actually, closer to 15 years) of my life have been to all of me. The physical effects are somewhat clear; I do not know how the thinning skin from the 17+ years of steroids will ultimate leave me, but I am starting to get an idea and it’s very scary; it looks like perhaps I might have weighed 400 pounds or more, which never was the case. When these thoughts enter my head or I look in the mirror I either tell myself “I can’t do it …” or I have a massive panic attack. And that’s just the obvious PHYSICAL implications of just one medication.

I have preached up and down a number of things, but right now two MAIN ideas come to mind in relation to the impact of chronic illness (and/or severe chronic pain) on one’s life – these are both “positive” effects:

1. It allows you to have time to reflect on what you want to do in life; if you had been traveling down a path that now looks quite dreary, you have the opportunity most people do not have insofar as having the time to learn about all kinds of things and figure out what you really enjoy doing.

2. That you are “heroic” insofar as your “timeline” doesn’t have to match up to the one that society imposes on people (if you could refute that point, I would love some hard evidence!). This can also be a challenge, but it gives you more time to reflect on what you do and don’t want out of life in general, which allows you to find the areas where your beliefs are, in fact, your own, and where they are simply derived from society, your parents, your education, &c. This is incredibly beneficial – as I have recently found out from my nearly 70-year-old neighbor, who does not know herself at all, at once lying to my face and telling the truth and telling the HOA manager to “F*ck off.” I wouldn’t say that to my friends. Like … that’s not something you just say to people without expecting radical and negative effects. I certainly would never say that to someone in that capacity; of course, she also told me I was “no good” and “a bad egg,” and a “troublemaker” among other things without even allowing me a second to speak (AND she screamed at me! When I asked her not to speak to me in such a way she drove away screaming louder, blaming her apparent inability to listen to facts on her Italian heritage … I am so sorry ITALY and to all Italians who might be reading this! That is not okay!!! You do not blame you poor behavior on your heritage … especially when you do not follow any of the other “stereotypes” and find them offensive! At any rate, someone who knew themselves better would certainly not have to resort to such juvenile tactics in an attempt to make someone else feel bad about herself when nothing wrong was ever done. In fact, what’s really funny, is that she told the manager, apparently after telling him to “F*ck off” that she was blocking my number, when she was the one who initially started conversations with me … and the last text I sent her was “I hope everything is well!”). I do not find that those affected with severe chronic illness are so volatile … at least without influence of medication such as steroids! I certainly know that those with severe chronic illness would not call others such awful things because we know very well that YOU NEVER KNOW WHAT OTHERS ARE GOING THROUGH! Which is another hilarious bit of it all – that she told me “I have problems too, you know!” completely unprovoked. I should have said “I can tell!” but I was just so caught off-guard, especially being that she was too lazy to walk the 20 feet to my car to scream at me, so she did so from the comfort of her car, parking next to my car as I gathered my things! If only she had ever read this blog!

My apologies for a long “Number TWO,” but I think it’s an important point. We have not been “properly conditioned” by society at large (or by some fictitious “heritage!” After the fact I also thought “DAMN! I should have said, ‘well, then since I’m largely Sioux, that gives me the right to scalp you, yes?'” As funny as that is, it is something I would never say to someone. Which has something to do with conditioning, at least in the current climate of the US and certain other countries like England, &c. I’m quite sure if someone had been African-American and pulled the race card there … it would not have been good. It’s not good to do regardless! What I am getting at with all of this is just that although it might seem to be a detriment to our futures that we do not know how to (on top of very likely not being able to) hold a 9-5 job for the rest of our lives, I actually believe that same “lack” bestows a much more creative spirit in us … and one that ultimately wants nothing more than to help others navigate these incredibly difficult waters at times in life when others have never had to “make up for lost time.”

With all of that said, I want to finish this post off by saying that I have spend this period of “global pandemic” so far not only experiencing massive chains of panic attacks, but realizing the extent to which my lack of “living my 20s” has really affected me. I have realized that I am deeply traumatized; I am actually currently hunting for a psychologist / psychiatrist who KNOWS how to work with those who have severe chronic illness because I honestly believe that I have developed CPTSD (Complex PTSD) from so many years of having the ground basically pulled out from under me when I have needed support and safety the most. It is actually a trigger of mine even thinking about psychologists because although I was very fortunate to find one for many years before she retired, I have had more than one not only tell me something to the effect of “BOY. YOU HAVE REAL PROBLEMS. There isn’t anything that I can do for you.” I have had psychologists tell me how codependent I was with my family when I was literally in/out of the hospital every 2-4 weeks nearly dying every time. Just writing this makes me cry very hard … and this is just scratching the surface of ONE very minor “piece of the puzzle.” I am deeply scarred and I am deeply hurt and in all of that I am deeply affected. I am not the person I was before this all started, back when I was 17 or 18 or 19. There is no way I could be.

And so, if there is a bit of a dark “turn” on this blog, I just want you to please bear with me and stick with me. I think the things I have started to unveil are things we all need to find and work on in order to get on with our lives and make the two positivity things mentioned above (and so much more) reality and not just chains of words. I know very well that you really cannot get into the light without first going through the dark, and I really hope that you will stick it out in hopes that it might help you as well.

If you have any comments about any of this or you would like to start this new “chapter” of life with me, please do not hesitate to do so! Please follow this blog and comment if you have any thoughts regarding anything I have said, either here or in previous posts. This is going to be TRUE deep diving. I know it will be incredibly painful; but, with that said, I don’t know about you, but I’m already in a ton of pain in my heart and in my mind. I don’t know if it is because I am starting to get a little better … when I have never in my life been “well.” I don’t know if it’s because I’m nearly completely OFF the steroids. Whatever the reason, I do know that I have to get through this muck to see a much better other side. And yes, it does hurt like HELL to see people doing what you want to do and having what you want when you have struggled so hard just to be alive and you have to work harder to get there than 10 of those lives combined. It might be the hardest part of all of this. I know I haven’t cried this much since I was a young teenager. But I WANT to get through it; I want NOT to have things I can’t even think about; I want to go on to have a LIFE that is MINE.

I hope you are all staying safe. I hope you are having a good week or will have a good week (tomorrow is Monday here and it kicks off a VERY long string of appointments for me). I wish you happiness and good health in every way, wherever you are in the world. And REMEMBER! MY HEART IS ALWAYS WITH YOU!!!

❤ Always, Beth