Death and Lupus

I have heard that the rate of death directly from the impact of Lupus, in any of its known variations, has greatly lessened in recent years. I guess this is due to technology and information booms that have come about because of such technological breakthroughs. Things such as the internet, smart technology and improved computer awareness. I wonder if Lupus was once much harder to identify and a vastly bigger mystery. Was recording data and sharing discoveries so darned…hard? And how much so? We have seen improvements in most medical fields, and in many fields in general due to scientific exploration. It feels to me as though the ability to diagnose the illness must lead to better outcomes for patients and more positive treatment options. But, like many other debilitating chronic illnesses, Lupus and death are still acquaintances. Lupus and death still walk hand-in-hand down the banks of the River Styx.

The First Time I Thought About My Death

I have been coping just fine with my Systemic Lupus Erythematosus (SLE) since I was diagnosed, thank you very much. Yes, I had trouble trying to breathe sometimes. Standing up straight and walking was always less glamourous than I could hope for. My photosensitivity was a nuisance. But I always felt that, as long as my hair was looking good, and my internal organs weren’t exhausted, I didn’t need to worry. That was until the Cerebral Vasculitis kicked in. Those first six months, I was quickly forced to reconcile with myself the chance that I was living with not just one rare chronic illness, but another potentially life-threatening illness as well. It was because of this that I, at the age of 25, started to think about my death.

Lupus Cerebritis and Death

An important fact of my Lupus Cerebritis is that it can mean the death of me in an instant with little or no warning. This is not a concept I have delved in to too deeply with anyone, even myself. This fact was unwise, I can see in hindsight, but it was essential at the time. To live a life aware that, at any moment I could have a blockage in one of the blood vessels and leave me dead? Well, that would have sent me loopy. I spent most of my illness making jokes about the attention I was getting. Or worrying about the effects of the medications. Or simply trying to keep my life organised and afloat on top of my health. I certainly did not spend any of my time fussing myself over the imminent prospects of death from my Cerebritis.

Brain Surgery and Death

There was only one point in which I came close to thinking of my health in terms of the possibility of death. This was when I had to sign documents for my brain biopsy acknowledging I may not survive and that I understood I may have brain damage. This was the first time I let myself think of my death, and that was only briefly. In the months and years following my surgery, and in the numerous chemo sessions, the quality and fragility of life becoming clear to me. I lived the life first-hand of a person returning (as I see it) from the brink of death, or a death-like existence.

But what did that mean for me?

You may have reached this conclusion already, but I was not coping with or processing my life and the events that happened to me. I was successfully suppressing everything, and it was not healthy. Sure, I may have talked about what was happening, but that didn’t mean I was emotionally addressing it. I was hiding my emotions away because they were not considered helpful for either my health or my studies. Sure, it seems like I was okay. I may have given you the impression that I was ‘cool’ with it all. Or approaching the illness from a practical, accepting place. You may even have thought I was quite cavalier about my life and got ‘a bit of a buzz’ from being so unwell. No. Nope. Nooope.

When my Lupus caused my Death

Firstly, I think I will make the obvious disclaimer in saying that I am not physically dead. Nor have I, at any stage in the past, encountered and lived through a physical death. The death I am will be referring to is an emotional death, a passing of the psychological ‘me’.

I don’t like saying the Lupus killed me as it seems a more dramatic turn of phrase. But I do want to impress that in my case I was suffering from the death of me, and that it was directly brought about due to my illness. You see, there was the Jessica I had been for my whole life to date. Even after I was diagnosed with the SLE, I was still me, in my terms, taking on my life. Sure, I had gone through the setbacks we all go through, either as we get older, or are involved in an injury or illness. My spritely energy had waned dramatically, and my body was no longer limber, agile and easily movable. But this happens to everyone, so I never took this change to heart. I knew it was part of getting older. The death I felt was the death of my soul and the entirety of my life directly by the Cerebritis.

I had been: actively engaging in yoga and surfing 1-2 times a week, physically able to shower regularly, go to the toilet alone, speak normally, drive without hesitation and go out at night to loud and crowded venues.

I was now: allowed to do some forms of low-impact exercise for up to 15 or 20 minutes in the presence of someone with First Aid, nor allowed to surf, able to shower once a week as long as I was highly medicated. I had trouble putting the words in my brain into speech, and somewhat paralysed on the left side of my face and body. My short and active memory struggled after lunch leaving me confused and repeating myself often. I was not allowed to drive after a seizure for at least 6 months or depending on the presence of lesions in my brain. Going out into crowds was a concern, not withstanding the added stress of low lights and loud noises.

Me after my Death

From a talkative, energetic, active person I retreated to a quiet, seemingly shy person with poor coordination who rarely went anywhere without a parent or close friend accompanying me. I went to bed at 8:30 and slept through until 10 or 11 the next day. Crosswords were my breakfast, lunch and dinner, and everything need to be written down somewhere clear for me to find. Spontaneous Jessie now lived her life by multiple routines, calendars and diaries. Last minute changes to any of this would leave me panicking and on the verge of tears. It sucked. The worst part was that I was still not processing or coping with this. My awareness and acceptance of these new changes were only shelved away with all my other emotional and psychological thoughts and reactions to this new illness.

When I Let It All Go

Everything I was holding back was on some level only held back so I could physically heal. Presumably when I was healthy or well enough in my SLE Lupus and Lupus Cerebritis my emotional and psychological halves could swoop in and start to clean up the mess that had been packed away all of that time. Except, as we all now know, I felt well for only a short period of itme before the catastrophe that is 2017, the cavalcade of deaths and unexpected tragedies occurred. The speed and stress this cause very quickly unhinged my mental composure. The deaths of loved ones around me triggered the implosion of my mind and forced me to confront years of neglected emotions. Thus the Mental Breakdown and Great Depression of 2017.

 

The deaths of those around me caused me to face my own death headlong. My absence from you came about as I coped with the unresolved death of me. This is how Lupus caused my death.

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