So for the past week or so I have been in a full-blown Crohn’s flare. Being sick as hell all the time anyway, even when my GI symptoms are relatively minimal (meaning, minimal for me as a person with a chronic and debilitating autoimmune and GI disease) I guess I had forgotten how bad things can actually get! Despite having recently worsening symptoms like crippling fatigue, arthritis in my fingers, toes, shoulders, hips and spine, dizziness and trouble walking, my GI symptoms have been at a blessed minimum lately, consisting merely of having to ruthlessly police my own diet and avoiding most foods available in the supermarket or anywhere; waking up nauseated every single day and having to lay (well, writhe around) in bed for an hour every morning trying to fart (apparently extreme bloating makes one nauseated? Who knew!); being hit randomly throughout the day with stabbing abdominal pains, gas and bloating, “heartburn” which is really esophageal spasms that feel more like a cardiac event than a gastrointestinal one, pangs of nausea and other distressing sensations, and being glad I live alone so I can accomplish this daily ritual/grind in peace.
Other than that (!!) I felt relatively okay until about 10 days ago when the dreaded intestinal gurgling began. As far as I can tell the gurgling starts as I become more and more inflamed and less and less able to control my symptoms — is it masticated food trying to bypass an obstruction? Because that’s what it seems like to me. In short order I was in a full-blown flare in which my abdomen feels, looks and is like a bloated whiskey barrel overstuffed with boggy loaves of bread, broken glass, 190 proof alcohol, and poison. The broken glass, alcohol and poison are self-explanatory (severe sharp/gnawing/grinding pain, burning, smothering malaise). The boggy loaves of bread are my inflamed intestines and that’s exactly what it feels like — for instance, instead of moving and/or bending easily at the waist, bending over becomes grueling and distressing and literally feels like I am working against a waterlogged loaf of Wonder bread where my appendix and terminal ileum should be (abdominal right lower quadrant). There’s another loaf where my ascending colon should be and so on. If I drop something on the floor whilst in this sorry state it better be something I won’t be needing for awhile because I literally cannot bend over (or reach!) to pick it up again.
Diarrhea, constipation (or both) go without saying while in this condition. Did you know you can have diarrhea and constipation at the same time? Because you can. I learned about that when my brother was terminally ill after all his organs began to fail and his guts stopped working. To illustrate, the constipation is like stalled city traffic and the diarrhea is like a seasoned (experienced, career) bike messenger. It just goes around. No offense intended to current, past or future career bike messengers, I’m just trying to create an image here and I’m too weary to try to come up with something less offensive and also less perfect because that’s pretty much exactly what it’s like. If anyone can think of a better analogy (simile?) I hope they will tell me.
Anyway, as I was
sitting in laying across my favorite chair and looking at my distended belly I thought to myself, wow, I am like completely disabled right now! If someone came into my home uninvited I would probably just have to let them. If I had to leave here in a hurry I couldn’t. I’m grounded here, completely and totally helpless, in utter mind-scrambling agony, physically disabled, unable to move. And I had forgotten that that’s what a full-blown Crohn’s flare is like for me — it’s not just about feeling sick (which I do all the time anyway) it’s not even about being stuck on or near a toilet (or having to shit laying down in the shower) it’s about being in severe physiological distress, unable to function on any level, unable to even move. At that moment, time slowed down for me as I no longer had any hopes, thoughts, plans or ambitions even 5 minutes into the future. The only thing that existed was me and my disabled body and I thought thank God I have access to medical marijuana. That was the sum and substance of my intellectual existence just then, I had no personality, no future, no past, no fear, nothing but disabling immobility and pain that I had no choice but to medicate and medicate I did.
I remembered why I was here in the first place — here, 1000 miles away from my previous life and away from anyone who might reasonably care about or for me (or not) hunkered down in a cannabis-legal state, treating multiple times a day and doing what I had to do to survive and be any kind of a functioning human. And I quickly remembered that for the 3 years I’ve been here, I’ve been on borrowed time. Before I left my previous home, having suffered that way — in a more or less constant full-blown flare — for 2 years by then, the only relief provided by Big Pharma being inadequate, fleeting (or nil) I had begun to plot and plan my suicide. Living with my basically-ex-by-then “boyfriend” and his mother, in a home much too small for the 3 of us, where one or both of them was always home and I was afforded no respect and no privacy, I planned to pick a fight with the boyfriend as a pretext to procuring and staying in a hotel room alone for several days. There, I would (hopefully) have the privacy and time I needed to end my life.
Having taken stock of my resources I realized I would probably have to accomplish this through hanging or several self-inflicted stab wounds combined with possible drowning. I didn’t and still don’t have access to pills which I regret immensely — soldiers and others are allotted cyanide pills for less but I had nothing like that and still don’t which is both unjust and terrifying (and I have a disease of malabsorption anyway so would pills even work?). I would have to be somewhat clever and accommodating depending on what the hotel room was like (bathtub or no?) and I would have to be lucky, and brave, and left undisturbed. And I knew very well I could fail.
I thought, but I won’t get to pet and love on the mother-in-law’s cats anymore, I will never get to use handmade artisan soap again, I won’t put my feet into UGG slippers again — these were the things that kept me comforted and sane those last days. And frankly I wasn’t quite ready to die just then and I was scared shitless I would fuck up my “attempt” (meaning, wholehearted sincere and justified effort) and fail. So instead of continuing to plot my suicide I started planning my escape. I ended up here knowing full well that I was on borrowed time: but moments away from suicide, I had literally no life, no future and no hope if I couldn’t treat the hellish, unrelenting pain and symptoms of un- or undertreated Crohn’s disease. And as I have been reminded through this latest flare, I still don’t. Instead of a life and hope for the future, I have a ticking time bomb inside of me that I can only somewhat control and only sometimes, I absolutely must control it the best I can for as long as I can (because Western medicine can’t) and there is absolutely nothing I can do about that. Nothing. And when there is nothing we can do, as some of us know too well, in that way we become free.
So for now I feel free — not free of consequences but free of decisionmaking power/responsibility, free of fear, regret or uncertainty, free of the burden and expenditure of trying to plan my escape or salvation from this isolated, insane hell in which I have made my home. I don’t know how long this feeling will last but for now I no longer fear for my future because I know I don’t have one, not like healthy people envision that. Literally all I can do now is to treat my pain and symptoms from one day to the next, knowing that at any time I can be struck down, immobile and disabled, where time will stop. In a way I am back to where I started when I first got here and figured out how to finally, finally mitigate the raging pain and symptoms of this awful disease — grateful. Just grateful. For now, there is nothing else but that.