Today I have mouth sores. I did a quick search, and it is a little mentioned but documented side effect of the Interferon. Kind of like my mouth is raw in lots of parts. Or like I burnt it on some really hot pizza, except not just the roof of my mouth. Like ulcers, or gum disease or something. It hurts to eat food. I noticed it last night, and started using a mouthwash, which hasn’t helped. The interwebs say that there are some scary sounding iodine rinses, or you can just try warm salty water. Though neither work that well. I’ll go for the salty water.
But it makes is really hard to eat. It hurts to have anything in contact with those areas. Especially hard or rough things. So when i got my sandwich today at the sandwich shop I go to nearly every day, I asked them to cut the crust off of the bread. I was bashful (if not ashamed) of having to make such a strange request. I mumbled something about having sores in my mouth, and chemotherapy. The two women who work the register know me well, and while they don’t adore me per se, I sense a fondness from them. They always remember that I don’t want a bag for my sandwich, and they love that I sometimes order one sandhich and 3 or 4 cookies (for my assistants!)Â I guess I’m a regular. So they smiled, maybe not really understanding what I mumbled but not caring, and told the guys making the sandwiches what I wanted, they all laughed. Not a mean laugh, but a hearty “never a dull moment” laugh. I said “at least I made them laugh.” In the last six months I have realized how important making people laugh is to me.
On my way out of the store the man who ordered after me, but got his sandwich before me (because they didn’t have to cut the crust off!) held the door open for me. As I reached to take the door from him and walk through the threshold he said, “I hope you feel better.” I had not paid him any attention, but he heard enough to know that something was wrong. He might have heard me say “chemotherapy” or “mouth sores” or maybe he just knew of the feeling of needing the crust cut from your bread.
My sandwich shop, like my studio, is in Chelsea. Chelsea is many things, but one of them is a neighborhood of men who have survived. Men who have seen their friends and lovers die. And men who understand the toxic side effects of therapeutic drugs. It was so comforting to have that anonymous man offer me his support. To keep the door open with his hand, and offer me his words. It was comforting, but it also made me cry. I guess I’m used to crying on the street at this point
His brief comment was an act of recognition. He was saying “I know you. Know that I know you. Know that you are known and noticed for the pain and suffering you must be going through.” Obviously he didn’t say that, but that is what those words meant in that context.
I have been really honored to have friends and colleagues and mentors and peers who have come out and told me their own stories of illness. Stories I did not know before. Cancer, HIV, immunodeficiencies, epilepsy, etc. When you are publicly sick, people offer their hand.
A number of the “How to Survive Cancer” books and websites and pamphlets that I have read are big on having you *not* allow people to tell you the stories of their great aunt melba who had x or y cancer. They counsel you to say “I’m very sorry about your great aunt melba, but each case is different and I am trying to remain positive about my treatment and outcomes.” They are especially aggressive about that if great aunt melba died.
While I have had to pull that line a few times when it became clear aunt melba was dead or dying, the vast majority of times people have told me about their own health struggles it has been comforting. It is like being welcomed into a world of other people like me that was existing in front of me, I just wasn’t able to or allowed to see it. It is comforting to know that there are other friends of mine out there who are surviving their own battles with their own physical challenges. It is comforting to know that I am not alone.
This post is for BB, HW, AW, BH, JW, SD, JC, CQ, EM, VT, LP, JG, KW, MH, IV, FG