My One Wish for the New Year as a Brain Surgery Survivor

I do not write this post to gain sympathy or pity. I am only hoping people will think twice before being so judgmental of others.

Nobody knows what another person is going through and we can all try to be a little more kind. My personal resolution for 2016 is to be more understanding of people than I already am. Sometimes all people want is for someone to be understanding.

My friend Hanah posted something tonight that rings so true for me today. For people with chronic illness we expect to live with some sort of pain every day, but we hope for a break from it if even for a few hours. My pain “break” is probably enough to still end a lot of people up in the emergency room or at least totally confined to their beds unable to function for several days at a time.

Today I am in the middle of one of my bad pain days. None of my rescue meds have helped. My heat packs seem worthless. I Can’t keep my food down. There are too many other symptoms to list, but my body feels like it’s killing itself from the inside out. This is what happens to me when I have those “pain break” moments and try to accomplish as much as I can in that short amount of time in which I am most functional. My body pays for it afterwards.

I know people may look at me and think things like, “You don’t look sick. You seemed fine yesterday why can’t you do this today?”

I don’t look sick because idiopathic intracranial hypertension is invisible.

What you don’t see are the scars from the 5 brain surgeries I’ve had. You don’t see me in full body sweats, drenching the sheets from the pain. You don’t see the sleepless nights up until 2:00 a.m. with a pressure headache, then jolted awake at 5:00 a.m. by a migraine. You don’t see the pulsatile tinnitus ringing away in my ears like church bells. You don’t see the trigger point injections, nerve block injections, lumbar punctures, botox, nasal nerve blocks, shunt taps, CT scans, MRI’s, blood labs, IV infusions, countless medications, etc. You don’t see me hugging the toilet, unable to keep food down but still not able to lose weight because of medication weight gain side effects and being too disabled to exercise normally. You don’t see the dietary restrictions causing my spinal fluid to increase, creating more problems. You don’t see me not able to tie my shoes because the pressure is so great in my skull I nearly black out bending over. You don’t see me unable to gain enough strength to shower for three days at a time. You don’t see me unable to keep up with simple housework or laundry or walking the dog or carrying groceries or getting the mail. You don’t see me walk with a cane or use my handicap placard every day. You don’t see the cognitive struggles. You don’t see me wear tinted glasses for a week straight because of extreme light sensitivity. You don’t see the depression. You don’t see the hundreds of hours and thousands of dollars spent at doctors offices.

You don’t see the pain.

You only see what I want you to see. My life is forever changed. You might think I am bitter (for about two seconds each day then it goes away because what good does that do? Absolutely nothing!).

I have lost so much but I have also gained a new respect for life. I am more thankful for the little things. I am more thankful for the relationships I have with family and friends. My circle of people who “get it.” I’ve learned to work to cut out negativity. While I acknowledge I will be sick for the rest of my life, I will not give up fighting.

I am a Survivor.