Today my spirit is overflowing with gratitude. I feel so lucky to have so many people in my life that care about me and have gone out of their way to help ensure that I end up in the hands of a skilled neurosurgeon.
We live in a time where the word privilege is thrown around quite a lot, today I am feeling that privilege more then I ever have in my life. This makes me both grateful that I happen to be in this position but also sad for others who I know do have the same kind of options.
Thanks to the many supportive friends and family that I have, we have secured appointments to see the top neurosurgeons at Cleveland Clinic (Jan 22), NY Presbyterian (Feb 4th) and Johns Hopkins (Feb 7th). Without people holding my hand on this journey and offering their support this would not be possible, and while holding space for that gratitude I also began to think about 14 years ago when I went on a mission trip to Philadelphia.
I was in my last semester of my bachelors program and had found out the day before I left that I was pregnant with my first baby, my daughter. I was excited to be part of this trip. I have always been a seeker of experiences and I couldn’t wait to meet people who I knew would have a lot to teach me.
I did learn a lot on that trip, I learned about the resiliency of the human spirit. I also learned firsthand about privilege. One of the days I spent there was at what was essentially an adult daycare, people came for the day and were entertained with games and crafts, snacks and companionship. On this particular day there was an elderly man who was about 70 years old, he began to have a tonic clonic seizure, and I being young and inexperienced in what working in a poor community meant didn’t understand why no one was calling for help. I got very upset and one of the workers pulled me aside and said “darling, we don’t call an ambulance for people like him, we lay him down on a couch and hope it stops”. No one had meds for him, no one had love for him, it was one of the saddest experiences of my life (and we all know I have had a lot of sad experiences). There was no family to call to come and get him, to let them know that he was not doing well, there was just nothing. I have thought a lot about that experience at many different points in my life, but last night and all day today I haven’t been able to stop thinking of him. Thinking of all the people who do not have access to good health care let alone the best health care, all the people who don’t understand how our health care system works and how to navigate it, all the people who don’t know to get a second opinion or don’t have time. I am privileged and I know it. I own it. I also am very grateful, this is not something I take for granted.
Knowing that I have a very rare type of tumor is terrifying, it would be easier to hear “we do 10 of these surgeries a week, this is no problem”, but that is not my reality. A small weight has been lifted knowing that I am seeing some of the best doctors and hopefully 2 out 3 of them agree on a plan moving forward so I can find some peace.