Having had another year to reflect, I realize when I wrote this blog, my head was full of Arnold both literally and metaphorically. At that time I still had so much going on: one kid in parent participation school, a preschooler, part-time work, a family and household to run. Arnold, however, was on the fore front of my mind. And when my brain is filled with something, it is much easier to then dump it all out in writing.
Now a days Arnold is not so prevalent in my life. He creeps up here and there, but does not dominate my thinking. He pops up when I am in a difficult hearing situation. In loud places I cup my ear to hear people. Even then it sometimes does not work. I strategically pick my seating in restaurants so I can hear a majority of the people. Sometimes I just stay mute in social settings because I can not understand anything anyone is saying anyway. And forget anything over a PA system. I can't understand anything said through speakers.
He creeps up when I am in a compromised situation. I was making a risky move around my truck once and lost my balance. I slipped off the curb and was on my back in seconds. I just do not have the reflexes to catch myself anymore. Thankfully I mostly landed in the ivy and did not hit or hurt anything. I notice it at the gym when doing new moves quickly: reverse burpee into a pull up. I had to jump to reach the bar and to be able to complete the pull-up. While the room did not spin, there was a lot of hesitation and deliberateness to those movements.
He also creeps up when friends are facing surgery or pain. How did I keep up my spirits? Was I ever down and did not want to get out of bed? How could I write an entire blog about it? How can I talk to easily about it?
Here are my answers and I hope it helps both people facing surgery, difficult recoveries or that know someone that is:
I have a loving and supportive family.
My husband was with me every step of the way. I did not have to ask him, he just was there. Every doctors appointment, talking to me about what the doctors said, talking with me each step of the way. For my recovery he took care of everything, made sure I took my meds, made sure I ate, and push me when I would get discouraged.
My kid provided unconditional love. They were so strong through this whole ordeal.
My parents are close and supported us however we needed it. They took care of the kids so my husband could be with me for the surgery and in the hospital. My mom cooked me food I could and wanted to eat.
My brother works for UCSF and insisted I get a second, better opinion. He talked me through how what I was hearing from the first set of doctors was not the right approach. I am forever thankful for his intervention.
I didn't have cancer.
There was no rush to treat. Once diagnosed, I was encouraged to watch and wait. I had months and months to accept that I was losing my hearing permanently and that at some point I would need to seek treatment. But not immediately. By the time most people have to make a decision about treatment I was still wrapping my head around all of this. I took an entire year to decide on treatment and even after making the decision, it was another 5 months until I was treated. So give yourself time to process and accept your diagnosis.
I didn't have cancer.
My amazing neighbor set a good example. This woman is diabetic, had cancer, at the time was in need of a kidney, and probably had a number of other things going on that affect her health. I have never thought of her as sick. She is always friendly and warm and greats us with a smile. If she is tired and needs a rest, she goes and takes a nap. She does not wear her issues like a badge, they do not define her, that is not who she is. She also takes care of herself and does what she needs to do to keep going. She is very open about all that she has been through and is going through, and that makes me comfortable to ask her questions. Through her humble strength she showed me I can get through this and come out smiling.
I didn’t have cancer.
Recovery was miserable.
I remember waking up in the ICU wondering, “What was I thinking?! I’ve made a terrible mistake…” I felt miserable and had no idea how I would ever feel normal again.
Thinking back I have come to realize that there are different types of "pain." I usually think of pain as that sharp pain you get when you have done something stupid and it hurts. My pain after surgery was not like that. It was more like a general miserable feeling that encompassed my entire body and made me not want to move ever again.
Did I get discouraged? Absolutely. Were there days when I did not want to get out of bed? Well, yes and no. In the beginning I slept almost sitting up or the pain would be too much. Then the sciatica made laying too long too painful. Thanks to those factors I had to get up and move.
My advice? Give yourself a break. Recovery is long, no fun at all and completely different for everyone. There will be complications and set backs. It is a yo-yo where one day you will feel like you are mending and the next you will feel worse than you have ever felt before. You just have to ride through it, keep your head looking ahead, and advocate for yourself. No one else knows what you are going through, so you do have to take care of yourself.
Some tips?
- Keep a schedule. Get up at the usual time, get dressed, eat when you normally eat, etc. Do not let the days blend together.
- Keep in touch with friends and family. Thanks to smart phones, it is easier than ever to drop people a line and have a quick conversation.
- Plan to have visitors, that makes you have to be up and ready at some point during the day.
- Keep trying things. This is the hardest for me, I hate to take medication and I just do not want to be worse off than I already am. Try the different medications, try different remedies, you have to find what will work for you. This is where care givers can help the most, by nudging you to try something different to help you along. You just never know what combination of things is going to help the most until you try it.
