A nice post @snake. The beautiful life I had the prior ten years and who I was before is important to me above all. I am always grateful for it and comforted by it. I do wish I could remember more.
I know too well of the horrible pain and emotional blunting, @Knifli. I myself push through the days, which have all felt like one, with an acknowledgement but never an acceptance of what has happened to me. I did not consent to the risk of this and like most never would. A year and a half ago I chose to find meaning in doing my best to help. I do and will continue to spend every day I’m able doing what I personally can to hopefully contribute to progress towards a better future. Patients, parents and scientists supportive of our efforts have said humbling things to me that show me it is worthwhile keeping on in absence of personal consideration. It is additionally encouraging to know that - no matter how many dermatologists line up to dismiss our lives with low quality publications - the truth is on our side. The speed of biotechnology relevant to understanding the situation is moving very quickly.
Awor’s incomparable effort is a huge support to me. I am grateful for the support of the friend in my life who genuinely tried to understand and has since contributed significantly technically to our projects behind the scenes. Although it is never easy to do, I like spending time with my housemates who are great people.
Keep being brave. It’s only courage when things aren’t easy