I just had my 13th surgery and 5th brain surgery. Every time my pseudotumor cerebri is out of remission and I have to have a surgery, it brings up so many feelings. I try and stay calm and collected until they roll me into the operating room but I go through being nervous, scared, anxious and even happy. The most complicated feeling is the luck I feel..
I feel lucky because honestly who endures, survives and thrives after not only 1 but 5 brain surgeries. That doesn’t seem like it can or should happen. So much has me in my feelings after surgery. I ask myself and God why me, why I am blessed enough to survive but also why should I have to endure it in the first place. I’m happy it’s over but sad because I know I’ll have to go through it again. I feel guilt because I know there are people like me going through the same thing and some of them don’t make it.
I should only feel blessed because of that fact but not always. Having a chronic illness that requires you to have multiple surgeries in your life just to manage is so hard. Feelings are all over the place. You’re happy in remission and then happy to be getting brain surgery again because it means less pain. You’re empathetic to other people but know that what you’re going through is probably worst. You know what it’s like to live the hardest day of your life over and over again because you get to endure the same pain daily you went to sleep with.You know the loneliness of no one else understanding these feelings. You know the pain of joking with the operating room nurse you had on your last surgery. You look at your scars and can’t believe you survived that pain, that left it there. You fall in love with your illness because it made you who you are but hate it at the same time because of what you’ve been through. Knowing that you have to live with these feelings, with the pain for the rest of your life with no cure can be heartbreaking everyday.
What has helped me to deal is remembering that even in the battle, even with the things PTC has taken away my life, I am a Miracle. Waiting for a cure, remember your journey is a miracle. We are lucky, Lucky that we get the chance to use what this illness teaches us. Lucky that we get to see the true strength of our mind and bodies. We are blessed to be able to understand the limits of our bodies. Blessed to be able to feel all these feelings and understand them. Blessed to be able to know who truly supports us and will be there. We are miracles that we get to comprehend how precious life and small moments are. People who endure chronic neurological conditions are miracles, we are blessed and lucky to survive all that we do, and we will keep being miracles and sharing our journeys to bless others.
I realize now although the feelings that come with pseudotumor cerebri and any other illness like mine are all consuming and confusing, they are mine and they are valid. It is okay to allow yourself to feel it all. No one survives what we do, accept for us.
I wish you enough and want you to be well!!