A fellow RA sufferer and RA champion, whom I have much admiration for, RA Guy posted recently about how he would like to be remembered.
For the first time I thought about it myself.
You see I have had two lives. Before sick and after sick. Then and now. The once professional, outgoing, people pleasing, naive, workaholic, driven, multi tasking, dynamic, wanting-to-experience-it-all, insecure person AND the now, too sick for the petty, quiet, lots of physical challenges, day by day problems, enjoying the little things when they come along, happy within myself, devoted, loving, kind, content, introverted advocate. So I don’t know which will be remembered and how. Maybe they both will.
I don’t spend a lot of time thinking about ‘after’ because my life is moment by moment. Day by day. The life after me will be someone else’s challenge. Many someone else’s experiences, but I hope it will be kinder and more aware of those who struggle with illness and disabilities. You really do/can know these people. There are many, many millions of them out there who need you. Who you need too.
There is a saying which suggests that how we treat the most neediest and weakest of us reflects on who we are as human beings. Perhaps people after me will spend time thinking more about these things. Perhaps I can help remind them. I can try.
If I am honest I would like to think that only good would be remembered of both, but not even I remember only the good about all my life. Although I can still think of some of the more challenging times of both lives with some degree of pride and resolve. With humanity and respect for my mistakes and troubles.
I would probably like to be remembered for my beliefs, my hopes, my character. My ups and downs. My good and bad. My life as being worthy, and remembered for the things I loved. I would like that remembered most of all.
I also want people to remember that I spent many years battling these illnessess. The pain, the embarrassment, the fear, the unknown, the indignity, the rejection and discrimination. I could have ‘checked out’ but didn’t. Why? Because I want people to remember these diseases are real and how they change lives. How they need us to remember them and how they need curing.
I don’t want the fact that I was sick to be forgotten or swept away. I want it to turn into awareness. Like other diseases. Like those brave souls who battled cancer etc. like those who lived with any disease or disability. I want memories to be bathed in respect and awareness. Respect for illnesses and diseases.
Since very few people are around me now they will have their own memories of me and the times we spent together. I don’t tend to socialize much when life is this hard and days are such a struggle, so memories of me may not always be recent but ultimately what people choose to remember will be entirely up to their choosing.
There is an old saying that people remember the way you made them feel. Those memories tend to be clearer and lasting. In that case then I hope I have left most people with some good feelings and thoughts.
I hope, in the years after I have gone, if someone drops by my blog then I hope it helps them learn about what life was like. What Autoimmune illnesses can do. What it’s like to live with two lives and two histories. What it’s like to be an idealists living in a broken body. And how much I did my best and loved my best.
If people think of me with pity, I hope it’s in reference to the the terrible pity it is that so many people live with such awful diseases and how deeply and uniquely they affect people. I hope that they think what a pity it is that more wasn’t understood. And one day, soon I hope, they will be able to say “what a pity she didn’t live long enough for that cure they discovered.”
When all is said and done and when the metaphoric dust settles, I hope most of all that if I am remembered after I am gone, that it will be in the form of a smile on the face of someone who has just remembered me.
4 thoughts on “Remember This –”
Very powerful and emotive, I really am saddened that you and others still have to suffer
It’s funny that I wasn’t sad or emotional when writing. I actually feel hopeful as I wrote it. Hopeful for everyone, everywhere. The symptoms can’t be changed. But lives can. Awareness can. My life is filled more with positive hopes and not the negative feelings
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Trish, I will always remember you and the impact you have had on me and so many others. You are an amazing lady with such a positive, caring and understanding attitude towards life and so many others with these terrible illnesses. Even my daughters know you by name as I only have good things to say about you. They think you’re ” bloody amazing” too. One of the first things my younger daughter said when she saw you picture and heard you speak thanking everyone. She said but Mum she is so pretty, it’s not fair!!! I love reading your posts not that I can keep up with them 😉 I will always remember you and your way with words. GENTLE SQUISHY HUGS TO YOU TRISH
You are too kind and the admiration is mutual xxx