What’s the Point?

I have had a very difficult week (for many reasons – I don’t really want to discuss any of them here or now, but I’m sure I will come up with posts with topics that “spin off” the issues with which I have been dealing), so I thought I would write very briefly about why I wanted to start this blog and what my overall “intention” is for writing. I also have had a few people come to me recently and inquire about the “meaning” behind some of the posts I have already written and so I thought I would take this opportunity to clarify things a little bit.

I was diagnosed with Behçet’s “Disease” in 2003; at the time, I was hospitalized for several weeks which was incredibly stressful in and of itself because I had decided to combine my Junior and Senior years of high school into one year in order to give up my class rank as would-be valedictorian (that is a long story; perhaps I will write about it here later….); I fought with this decision because all of my friends were not graduating for another year: at the same time, the people who pushed me to graduate a year early were also not graduating for another year. I pushed ahead, and, after a long discussion with the principal who, at the time, wanted to ensure that I would be “okay to graduate” having missed so much school due to illness (this was not uncommon for me – most of my school years were comprised of at least 2-3 months of “sick time”) and passing all of my finals and AP tests with 4s and 5s, I graduated high school. (A funny part of that was that although my class rank basically “bottomed out” due to having lost a year of grades, I was far from the bottom of the class!) I actually started school the fall of that year but quickly realized the school I had “chosen” was not right for me, and due to continuing health problems, took the rest of the Fall 2003 semester off, choosing instead to attend a local college in Spring 2004. I attended that school for a year before heading off to Pittsburgh – after visiting many schools and thinking my health had more or less “evened out.”

To make a very long story short, I got very sick in my first year of school due to the inability to metabolize azathioprine in conjunction with contracting a fairly benign (at least to others) “stomach bug.” At the time I was actually lucky because I managed to land a spot in a “women’s only” dorm and thankfully, when I passed out in a pool of my own bloody vomit early one morning, my roommate heard the bang and came to my aid. I had to be physically carried to Health Services by Campus Security because I had been bleeding internally; I was taken via ambulance to the hospital from Health Services (I honestly don’t remember much of that other than my blood pressure bottomed out and I was just in and out of consciousness). After extensive research and another long bout of illness (a classmate in a lecture hall apparently had bronchitis that I also contracted – and no illness has ever “just been” anything like “just bronchitis;” I was sick for months), the nurses at Health Services and I decided it was highly likely I had a Primary Immune Deficiency and they made an appointment for me with a “local” immunologist. I was diagnosed with Common Variable Immune Deficiency around 2005-2006 after more or less diagnosing myself and having the diagnosis confirmed by aforementioned immunologist.

The years went by and I continued to contract severe infections thanks to my CVID and the immunosuppressants I was taking for the Behçet’s. I was unable to graduate in 2007 with the rest of my class (despite having more or less “caught up,” thanks mostly to the AP credits I had accumulated in my Jr/Sr year of high school as well as taking classes over the summer and NO THANKS to the school itself – that is another story and a very important one!). To skip over some “personal stuff,” I became very ill in 2008 with C. Diff which recurred once and after which I had to have exploratory abdominal surgery. It was shortly after all of this that the Behçet’s started to affect my joints causing severe pain and very shortly after that that the “disease” went systemic, affecting my eyes and nearly costing me my eyesight on a number of occasions.

I have been fighting to control this awful illness (as well as the frequent infections) ever since. I saw some very difficult years; there were years in which literally half of my life was spent in a hospital bed. At this point in time I am still battling Behçet’s (this week I saw it rear its ugly head terrifyingly quickly) and am very much battling the side effects of nearly 16 years of treatment with steroids and the withdrawal that accompanies the very long tapering process involved with trying to get off these drugs.

To sum all of that up, I have “lost” about 10 years – a decade – of my life; I missed most of my 20’s (one of those years was spent in a hospital bed just able to eat after making the mistake of taking a Motrin to attempt to deal with the insane joint and bone pain and swelling I was experiencing – I ended up with a stomach full of dried blood by the time the doctors in hospital could perform an endoscopy / upper GI series). If you are one of the many and very LUCKY people who didn’t miss out on this period of time, imagine losing EVERYTHING you had accomplished from the time you were about 22 until you were over 30. No relationships, no children; the inability to finish your undergraduate education despite numerous attempts to do so and the associated inability to go on to graduate education; no jobs and very little money; no friends because they just lost interest after so many attempts at trying to “catch you at a good time” to go out; the list can go on and on and on. I have tried very hard not to allow myself to become “bitter” over all of this, but it is, to this day, a daily struggle. I see people who were still kids when I was in college getting married and having kids and becoming doctors and my heart breaks over and over again. I cannot let my mind dwell too long in this place because if I were to do so, it would very much break me.

What I am getting at with all of this “background information” is this – that the perspective through which I have come to view life and all of its components is a very different one than that with which “normal,” “healthy” people see things. It is very often a terribly lonely place; a terribly scary place; a place where you wonder every day if you are going to die on the streets from your illness and the inability to afford insurance and necessarily expensive medication, alone, homeless, sad, having never really had the “real” opportunity to leave anything material behind. Again, I try very hard not to dwell in this place because it is a place that leads to madness and then nothingness – and I cannot give in to these things. I know, however, that I am far from the only person to experience this and that the “perspective” I have on life and the world is often not a terribly bleak one; it is often just the opposite, very compassionate, caring, and all-encompassing. I am sure you have noticed that I ask many questions that relate to just this – how is is that a life that has been so tumultuous and compassionless can yield so much love and kindness and empathy? This question and others like it are questions I want to address here – and I want to acknowledge the facts that I am not alone in this and YOU are not alone in this and that those of us who have “lost years” like this (or whatever specific circumstance might be causing you to have a “different” perspective than that which is the “social norm”) have incredible stories to tell the world and an important “mission,” if you will, in doing so – we have a strength, stamina, and motivation that is (in my mind, at least!) unrivaled by the vast majority of “normal,” “healthy” people. We know what it is like to feel as if everything has been taken away; to not only not have our wants met but to not have many of our basic needs met – and we know we don’t want others to feel this way.

And so, in that lengthy post (as they all tend to be! I always set out to write something “short” and it rarely turns out that way!), I just want to state that my INTENTION for writing this blog is to share with the world at large the perspective that I have gained in my “decade+” of chronic illness; what I see in others, what institutions like marriage and education look like and FEEL LIKE from the outside, where I see “errors” in the social expectations of people in general, &c. &c. &c. I also want to let others who have suffered from chronic illness or other “life-affecting” circumstances to know that they/YOU are not alone in any of it and that even at your darkest, loneliest times, there are always people who are going through the same things that you are – if things get bad, always reach out and look up – I promise you, the darkest of the dark is somewhere else entirely (I will talk about that in another post or set of posts as well!), and if you do persevere, you will gain something incredible (you might not see it right away, but I have to believe there is some “reward” at the end of these sorts of struggles). There are always the bad times and the times when it all seems like too much to hold for a second longer and I want to convey that as well; and in that, I just want to reiterate that even in the worst of times there is hope and there are others who know what you are going through.

I hope that was at all coherent – as I mentioned at the beginning of this post, it has been a particularly difficult week for me, so I do apologize if this was tortuous at best. At any rate, I hope that provided at least a little background as well as a rough “outline” for my intention in being here and writing these posts. I hope you are all having a wonderful weekend and I really do hope you are having a happy and healthy day wherever you are in the world! *AND IF YOU EVER JUST NEED SOMEONE TO TALK TO, IF YOU ARE IN A PARTICULARLY DARK SPOT, I AM ALWAYS, ALWAYS A SHOULDER TO LEAN ON, AND SOMEONE WHO WILL LISTEN! THAT IS JUST SOMETHING I WANTED AND NEEDED TO GET OUT THERE AS WELL!* Thank you for taking the time to read this and be well!

❤ Always, Beth

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