macular degeneration, macular, diagnosis My First 100 Days: Part 1 Hopelessness? – My Macular Degeneration Journey/Journal

My First 100 Days: Part 1 Hopelessness?

Good afternoon! Got my exercise in – Zumba and a dog walk – and expecting a thunderstorm presently. I like storms. It may sound sort of crazy but I like knowing there is a powerful universe out there. I also like knowing Someone out there cares enough to shelter me.

But enough of weird philosophy. I really should not do it. I am a conscientious objector to people stepping too far out of their expertise. I once went to a Ricky Martin concert and he started talking about his vision for the world. No. We don’t ask the Dali Lama to shake his ass and we don’t ask rock stars about philosophy!

OK. Enough, but in a weird way that leads around to something I do want to talk about: hope. Lin wants me to do a retrospective. I am coming up on 100 days post vision loss and it seems appropriate. The thing is I don’t just want to do a chronicle. I do have half an idea. It will probably turn into several pages. (Half an idea turning into several pages? Yes, I can pile it up! ?) Let me try it and see if it flies.

According to my day planner all hell broke loose between January 31 and February 12. That is less than two weeks to go from totally functional, sighted person to hot mess. I was having MAJOR panic attacks. I knew what they were. Part of my brain very dispassionately identified them but my autonomic nervous system was off to the races. The girl was in a bad way.

I have had some people tell me quite candidly they would want to commit suicide if they were going blind. Well, thank you very much! Should I take that as a suggestion?

The thought of suicide never crossed my mind. Not that it is an uncommon thought. Not that it is not understandable. It is just that suicide and hopelessness are closely linked and so far I have not been hopeless.

To lecture a bit here, suicide.org says hopelessness is a feeling that conditions will never change. There is no solution to a problem.  Dying would be better than living. So far I have managed to skirt around that.

Why? To begin with, I had done my homework. You can say what you like about science and technology but, damn, they are doing incredible things. I had met Regillo and read what he and his team are doing. Not to put undue pressure on those folks, but my money is on them!

Being a special education professional, I was already aware of assistive technology. I knew there are people out there whose job it is to help people like us. I contacted them.

I also have had people who believe in me. How can things be hopeless if people I trust are telling me I can do it? They may have been delusional, but I probably owed them a try.

OK. Back to my lectern!

Again, thoughts of suicide happen. They are often a reaction to a feeling of hopelessness. They are not shameful but they are wrong. The old adage says “suicide is a permanent solution to a temporary problem”. Even if our vision loss is not temporary, even if science does not find a cure in time for us, even if we never have our vision restored, there is still hope for better functioning.

If you are feeling suicidal, get help. Tell a friend or family member.  In the US the number for the national suicide prevention hotline is 1-800-273-8255. In the UK it is +44(0)8457909192. I think. I never understand foreign telephone systems. Our friends in the UK, could you post the number, please?

I guess that is a start. Onward on the retrospective or maybe I should say “forward to the past!” Anyone own a DeLorean? [Have you seen the movie Back to the Future? The DeLorean is a car that is the time machine in the movie.]

Next: MY FIRST 100 DAYS: PART 2 DENIAL

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