Lately, I have been trying to realise what my future will look like. These last few days, weeks, months have been harder for me than I honestly ever thought. It would make sense that when your life changes as much as mine has that your outlook on things to come will also change. So why hadn’t mine? And what affect has this had on my life now? More so, what does this mean for my future?
In the Beginning
When I was diagnosed with Systemic Lupus Erythematosus (SLE or Lupus) and, I guess I didn’t take it seriously. For me, I seemed to behave like you would if you went to the doctor and he said you had a cold or infection. “You have this, so take this and you will be fine.” But it wasn’t. I paid no attention to the name. I certainly ignored what the diagnosis meant. Of course, this does not mean life was easy. It just means that I was oblivious. Unsympathetic. Naïve. Slowly, over the space of years it started to come to me that there were definite events and occurrences that I could not avoid. These things were taking a toll and for me to live a ‘well’ life, I would need to make changes. So, that is what I did. Changes were made to all parts of my life, slowly and in due course. I never resented this but somehow, I did forget it.
Reflectively, studying teaching at Murdoch was always going to hold a big question over me. Would the stress of study be something I could handle? Would my body handle high-pressure, late night, last minute study sessions? So many ‘would?s’ and ‘could?s’ arose for everyone but me. When they came my way I would just shrug them off, ignorant of the reality I was living in. Thank goodness my parents and family knew me well! As you know, I was only at the institution for a brief time before my world was turned upside-down yet again. The illness rapidly took on a deeper meaning for me, but my inability to think seriously or realistically about the situation remained. My naivety never wavered and so I just kept pushing through my degree. That is until February 14th of this year, 2018.
My Life in Uncertainty
After the initial shock of this heartbreaking Valentine’s Day outcome I was forced to sit down and truly reflect on my situation. I remained largely self-focussed, preferring to wallow in self-pity and keep my attentions on the here-and-now, rather than the larger world and how I would now fit. So much has happened in the last five years since I began studying. Add to this the nature of my illness and you may understand how and why I prefer to say that I cannot recall my life before 2013. I was an active young woman who woke early in the morning to take my paddleboard surfing. I had trained as a yoga teacher and could maintain daily 90-minute practices with ease. I could think quickly and clearly and had a strong, constant ‘outside voice’, with the personality to match. Now I am a quiet, somewhat reserved, university graduate who could only sustain mild exercise for brief periods a mere ‘few times’ a week. Oh, and I am very openly emotional. And that degree I have? I cannot use. I do not even know what work I am capable of achieving and sustaining, or how to acquire access to it.
My Future as a Bachelor
Recently I became a member of the Murdoch Alumni. Yes, I graduated. With a working and usable knowledge of the Education System of Western Australia. But not a qualification or certification to use this to teach. Which is what employers actually want when it comes to that knowledge. Needless to say, I have been exploring all of the possible alternatives to this. I mean, you don’t get a degree and not know how to use even the basic skills and transferable knowledge. This is why I have been so distant from you lately. You see, it’s not you. It’s me. Yes, I have been distant. I have neglected you. And I am really sorry. To say this does sound a bit disingenuous, I know. There is not that much I can say to excuse myself, either. So I want you to know what I am doing, where I have been and what I want for my future.
A Reason for my Future
Let’s start with the basics: You rarely hear me use the God word. I think I was meant to study at university at the time that I did. Further to this, I think I was meant to study something that so deeply involved the way the mind works, and how society works, what it means to be community and how we are all so different. As well as all the different ways I can be an effective communicator, and how to build and maintain strong interpersonal relationships. All of this was meant to come to me as my brain and life were being rewired, so that these capabilities became my foundation. Even my writing like this so regularly had reason. I am here to help others like me. People who have woken up in a shit stew, or unknowingly taken a wrong turn at Symptom Number One and ended up on the Chronic Disease Highway without an option of taking an offramp. The reason for my being…me…is to be there so other people don’t have to take their journey alone.
A Future With This Lupus Life
This is all well and good, but being a mentor, or something similar does not pay the bills. Not easily. Instead I have been building up my bank of contacts, sharing my message, skills, capabilities and time with a variety of, what I consider to be, valuable future ‘stakeholders’. My focus? I want to be involved in health. To build my awareness of, and skills in, the health industry. For this to happen, I have designated my future path as one of an advocate for Lupus, Arthritis and similar chronic illnesses. From this date, consider me walking on the path of health and wellness supporter. Know that when I apologise for disappearing at times, or pop-up worn-out and dribbling things that only half make sense, I have been pushing down a path that I am creating myself. Good things are coming, but I need to find room in the world for them myself.
A Future in This Body
My anti-seizure medication has been doubled. This manages the frequency of my migraines, apparently. My mind does not hold lesions at present. But they will be expected to come back, also apparently. There is a slight amount more brain alteration, but there is no reason for this and there is no understanding what this means for me. At this stage it is assumed that I will continue to have the Rituximab chemotherapy every 9-18 months for the foreseeable future. When I have this, I cannot go to the dentist for 6 months following. I cannot visit new-born children until they are vaccinated, or pregnant women. Nor can I be around young children in large numbers. At all times I am advised not to spend more than 3 hours in the sun, no matter how well-covered up I am, or if I remain in partial shade, such as under a tree. I cannot be in situations with too much visual or audio stimuli requiring high physical movements from myself (ie a classroom or a large party).
Ultimately, what the future holds for me, I don’t know. Where this body will go in the future, I am not sure, nor do I feel I have much, or any, control over this. Is there an ideal occupation for me? I cannot say but I do know that if I trust that the right thing will come to me when it is the right time, then it will.