Samira Rajabi was diagnosed with a vestibular schwannoma, also known as an acoustic neuroma in 2012. She has had ten surgeries to deal with her tumor and its various side effects. She writes a blog about her life, surgeries, recovery and experiences at LivingWithHerbert.com. She is currently a post-doctoral fellow at the Center for Advanced Research in Global Communication at the University of Pennsylvania, where she studies media studies. In her spare time she plays with her two pups and spends time with her husband exploring Philadelphia.
So often we tell ourselves stories about what being sick or well looks like, but sometimes we just have to be honest with the unknown.
I set an intention for my year at the end of last with some people who are very special to me.
I decided to be radically honest in how I was feeling this year. I knew as I set that intention that it would not be easy. It hasn’t been.
I didn’t expect my year to hold any hardship, or if it did, I figured it would be the regular amount. Instead, life dropped heaping spoonful of crap onto me, and I was somehow compelled to come through it smiling and better for it.
I figure, in honor of my intention, it is time to be honest.
I am stuck somewhere in between being sick and being well. I had surgery. I have some headaches. I don’t know if surgery solved my problems but I know that for now, not knowing is all I’ve got. I am well enough to do certain things but not well enough to return to the life that was previously in progress. For example, today I tried to see for too long so I am tired, weary and have a headache. I get frustrated easily and lonely even easier, but don’t seem to want any company. I hide behind my screens and my pain. I simply hide. I am afraid of the whole world going on without me. I am afraid the world doesn’t need me. I do not communicate my fear.
I have decidedly not been radically honest, not with myself, not with you, not at all. That said, for the sake of being present, for living in the here and now, I am going to start trying.
So here is my effort in fulfilling an intention in a way that is perhaps more helpful than the screaming rants I’ve been carrying around with me. I am making a list, for myself and others, who are living somewhere in between sickness and health. A sort of seat of my pants how-to on how to survive this part of life that is sort of contingent — always waiting on a doctor’s approval, diagnosis or decree. This is not a complete list and it may not be a very good one, but it will be as honest as I can be, here in this particular moment of recovery.
1) Everyone is going to seem more OK than you when you’re stuck in between the worlds of the sick and the well. You will miss out on stuff. You will sleep through things. You will be angry, and maybe that’s OK in the end.
2) It’s OK to be mad, as long as you name what you’re mad at. Once you name it, you do your best to let it go.
3) Being scared of the contingent life you’ve been leading for years doesn’t make you weak, it makes you human. Being human is not a concession. Being human is what we are; It is awesome, and you are awesome.
4) It’s OK to be grateful for the people who take care of you and want to hide from them as well.
5) Sometimes you will feel bad, you will feel like a burden, you will think the world will be better off without you — you’re wrong! You are a gift. The world has you, and as long as it has you it is because it needs you, and whatever this medical mess is that you are in, it doesn’t diminish what a great person, family member, friend, lover, etc. you are. If you were a catch before, you are a catch now.
6) Sometimes your attitude is bad. That is OK. Forgive yourself.
7) Sometimes your attitude is super good and you may not even know how you got to that point. Embrace those moments.
8) Being sick is hard. Naps are acceptable. Saying no is acceptable. Doing activities is acceptable, and not doing activities is acceptable — there is no right way to be sick, just like there is no right way to be healthy. Don’t put judgement on yourself or internalize judgement from others about how you figure this time of life out.
9) Life is suffering in a lot of ways. Life is joy in a lot of ways. Whether in suffering or joy, good TV can help the time pass.
10) Some days, despite your very best efforts, you will struggle. Those days genuinely suck. Just sit with it and let it contrast with the days where the light shines endlessly bright and you forget that you were ever a regular in a doctor’s waiting room at all.
Maybe this helps, maybe it doesn’t. But it is honest, it is genuine, and it is where I am now. Best of luck to all of us in this messy, joyful, difficult, beautiful life.