I have had four Optic Neuritis attacks, that despite working with some of the most prestigious clinics in the country, the primary cause remains undiagnosed. In a health crisis, I self-published a book about life in isolation with my inflatable friend Rafael. $5 of the sale of each book goes towards credible organizations that provide patient support and research ON. It is my personal goal to stop big phamra from underplaying the side effects of prednisone and fight for an alternative to the drug.
Community Voices

My Admission.

If you don’t like to talk about, deal with, or have feelings, I strongly hope you never have a health crisis. For if you go through a health scare you will experience a large range of emotions that include everything from shame to rage. You won’t be able to control them and they will take you out like a tidal wave. Better yet, others will run from them like they are Tsunami. You can feel like a lone survivor after the devastation.

I went through a phase where I laid awake at night asking myself and the universe what I had done to all of the sudden be fighting #Blindness as I watch others wash their Doritos down with a Coke? People say silly things like thanking me for sharing something so private as if having a health issue is something to be ashamed about. If we should be ashamed of anything as a culture, it should be for perpetually invalidating the way people feel physically and mentally. I did nothing wrong and didn’t deserve this path. I even checked in with Santa and J.C. and they said the same.

I have survived and not only continue to survive, but thrive because my own health protocol includes just sucking as much juice out of life in the here and now. While I fight for my sight, I have put to bed that the future may be very different for me; it may be very dark. But I don’t live in the future and while I try to make good decisions that will help me down the line, I live in the now.

It has taken me some time to put this down on paper and I have never once had a discussion about what life would be like for me in the future if I was blind. I mean, who wants to talk about that? Nobody, especially not me. But the reality of the possibility looms in the background.

There was a time, when my mental state was not good, mainly due to Prednisone. I had plotted to hire a lawyer to get all things in order and I had intended to tell a dear friend that I would be considering taking my own life if I became blind. I didn’t want to live dependently and as a burden. Though I can’t grasp what life would be like for me without sight and I don’t want to think about it, I love my life and the people in it far too much to walk away from it. I intend to live and when I use the word live, I do mean the action of living.

Yes, I have a blow-up doll, but I don’t have anyone to take care of me. I never really have and I don’t think anyone knows what that looks like because the people who know me know that I just do everything my way and on my own. But when you feel like hell in a pandemic and your brain is defying you, you learn you have to lean pretty heavily on others even when it is hard to ask.

A few weeks ago, I took my niece out for some chicken wings and to go shopping. I used to always tell her that she has to take me out for pie when I am old, but this time the ask was bigger. I asked her, casually, that if I were to go blind and we had places to go, she would make sure I had nice outfits, and that my hair was combed. I asked that for special occasions, she would put red lipstick on me. She agreed; we discussed it no more and I bought her a big bag of saltwater taffy as a reward for listening to her ridiculous aunt.

Recently, I was van camping with my friend Christian who invested a lot of time and resources into converting a van into a home. I made him promise that if I go blind that he would take me on a long trip to vineyards all over Washington and Oregon letting me taste all the local wines. He promised and also told me he would describe all the scenery to me as beautiful even if it was a dump.

In these two conversations, there was an underlying secret agreement. There was an ask for help and a confession of fear. I asked in other words, “if I go blind and it is hard for me to take care of myself, will you promise not to leave me?” It is these conversations that tell me I will be ok no matter what.

My admission is that I am afraid of going blind. I am very afraid of not feeling well or like my old self again. I am terrified of having to ever be on Prednisone again. But even more so, I am afraid of wasting any more time in this sacred life and body not savoring every brilliant moment and every amazing person.

I realize this type of statement makes some people want to delete me because they think I a full of shit. Yes, I don’t feel like this every day. I often do things like swear at and curse out other drivers for being in my way, but I am trying to put my sights on what is good…at least while I still have them.

Community Voices

Do other patients struggle with the lack of care in the healthcare system?

<p>Do other patients struggle with the lack of care in the healthcare system?</p>