An introspection

When you think about it, growing up is pretty scary. When you hit the moment of ‘oh wow, I’m an adult’ and that doesn’t so much mean freedom as having to stand on your own feet.

It’s daunting, but not awful. I’m a responsible citizen. I’ve been okay since I was a teen, ‘cos I got a plan:

1. Take GCSEs
2. Take (interesting) Alevels
3. Study computing at university
4. Get good job (programming or academia) with pension plan
5. Have family
6. Work hard and enjoy life
7. Retire

It’s a pretty good plan, right? I can support myself, eventually support a family. Oh, and the job… I was a programmer for 3 months and I loved it passionately. As much as I love learning and researching and teaching. Wow- I’m torn between the two! I love working, and I have fairly open access to two amazing careers, either of which would give me enough to live off.

The scaryness is kinda more anticipation, when I think about this. I’m set up to be a competant adult, someone who loves what they do and is able to give back to society. Good prospects!

Except for a teeny-weeny spanner in the works: before I managed no.1 on my great to-do list, I developed ME. None of the doctors spotted it in the critical first 2 years, so I didn’t rest up; I worked as hard as I could to get over the initial infection and get on with life. Nobody would warn me that hard work and exercise could kill me, now. Nobody would get an inkling of what the illness was that I had to push through every day to try to live normally, until I was well out of the first five years. The precious first five years, when you still have a 20% chance of recovery.

I worked hard and persevered to achieve my goals, every health setback making me more determined to push through and make it. I worked harder and harder, right up until the day I woke up unable to walk anymore.

So now I have this teeny problem to deal with in my master plan.

I’m well past the 2 and 5 year milestones, so any recovery is limited to the finding of a treatment/cure, or an all out miracle. And I’m not ruling out a miracle: God can surely do it. But up to now He doesn’t seem inclined to, so I have to assume it’s best not to (for now).

Nos.3-6 are on hold indefinitely, since I run at 10-20% capability, not nearly enough for anything even resembling functionality. No.7 is beyond the scope of my life expextancy, but I still have to fight tooth and nail to convince people I’m ill enough to get NI contributions paid, on the off chance I’m ever old enough to need a pension.

What do I do now? I’m not going to sit about and wait for a spontaneous remission which is never going to happen (which is what the more sensible doctors seem to want me to do). I want to live, so I guess I need a new life.

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2 responses to “An introspection

  1. Right there with you.

    One thing I have to point out right away though is that just by writing this blog, you’re giving back to society!! Having the courage to put your experience into words (even though you’re admitting that you feel vulnerable and like a failure) helps the rest of us who feel the same way. At least we know that we’re not alone in our struggle to live. Thank you!!

    For me, it’s been a lot of redefining what I mean by “giving back to society” or “working hard and enjoying life”. I prayed a lot, just telling God things like, “I have always wanted to have a family. If that’s not part of Your plan for me, help me to be okay with that.”

    Secondly, I spent some time thinking about people in my life who have meant a lot to me. My grandmother, for example, hardly speaks any English, but she’s found a way to demonstrate her interest and care in all her grandchildren. One of my friends is really busy with two young children and her own business; she barely has time to keep up with those things, let alone other people!! But if you ever walk into her home, it’s bright and cheery, full of love and warmth. Part of it is the colors she decorates the house with, part of it is the smell of homemade cooking, part of it is the way her children and pets welcome friends, and part of it is just her.

    It’s a challenge to really figure out what you’re living for. But I applaud you for writing about it & I’m cheering you on from afar!!

    ~Abigail

  2. Not a new life, just a changed life. You can reach those goals in smaller steps, maybe in different ways to how you first thought, and by prioritising and deciding what you really, really do want. Well done on getting through GCSE and A Level, it’s tough enough never mind with ME in the mix too. All the best with your life journey. :)