The UNDying Life: A MOTHER'S TALE OF LIVING WITH AVM
I was diagnosed with a 10cm AVM ( arteriovenous malformation) one day before my 27th birthday. I was having an MRI done to address debilitating migraines for a few months and put off getting scanned because I was scared of being enclosed in the imaging machine. After the MRI, I was asked a series of questions regarding any symptoms I was experiencing. I thought nothing of the questioning and assumed they were general and did not have anything to do with my condition. I left, never thinking twice, and assuming I would get the results when I returned to my physician for a follow up. After being home for a few hours, I received a phone call from the doctor letting me know I had a large AVM in my occipital lobe. I was told I would require more imaging and should be mindful of a series of symptoms that are warning signs to a hemorrhagic stroke.
After that day, every aspect of my life began to change. The first year was a blur of hospital visits, neurosurgeons, scanning a hospital stay and my very first round of hair loss. (If i would have known how many times I would loose my hair I would not have been so devastated). My condition was deemed, "inoperable" at that time because of how large and deep the AVM was.
When I initially found out about my condition I was alone, in a high risk pregnancy with a condition I didn't fully understand. I was working and trying to pay bills, take meds and raise a son. I struggled so much because I didn't want to ask for help. Being a single mother and taking care of yourself was hard and I had to learn to patient with myself. God blessed me with a really sweet sensitive boy and he gave me balance. Being sick while raising him taught me to listen to him and what he needed. I realized that I was raising a human and not controlling a child. I am a much more thoughtful human and mother and I have learned to be more patient because of my journey.
One of the hardest battles was enduring the changes. Some changes, I easily embraced while others, I fought until the bitter end. Things that were once so important to me like, my outward appearance, my independence, specifically my ability to drive and my ability to see were all things I fought so hard to keep and I had a difficult time excepting. Even as I write, tears fall from my eyes. I've had to learn how to do things differently and adjust. I would say, the constant need to readjust stands out most. I was forced to constantly adapt and evolve. I had to fight a little harder for my happiness because it no longer existed within the confines of superficial things.
I lost my hair several times and each time, I cried a little less. I remember my evolution from trying to cover it with weaves, and my scalp burning with pain because of radiation, and then, deciding wigs were better. The door bell couldn't ring without me running for my wig and I had massive sores all over from treatment. Finally, for the last treatment and brain surgery that followed, I embraced my baldness. I no longer wore wigs, and I learned how to wrap my hair. I had to accept the new me and let go of the idea of who I was.
Over the years my vision continued to deteriorate but I was determined to finish school in the midst of everything, and so I finished my Associates Degree online and graduated 2010. In 2015 I was laid off due mostly to my health, and immediately began treatment. Treatment included a total of 6 angioembolizations which included concentrated doses of radiation followed by a 15 hour brain surgery that saved by life, but left me legally blind. Since my diagnoses, I have had two children, graduated from college and married.
None of this has been easy, I've had a lot of breakdowns, I've questioned God and I've wondered, "Why ,me?" However, after all the surgeries, hospital stays and very close encounter with death I had after contracting meningitis, God and I had a lot of small conversations, where I begged God to stop the pain, to help me make it out alive and thanking God for all the great things I had experienced up to this point. While I wanted to live, I understood the risk and also realized up to that point, I had such an amazing journey, filled with love, traveling and family.
What helped me balance it all the most? Well, THERAPY! Honestly, I am a constant work in progress. I see a therapist every two weeks, to keep my anxiety in check and also, to unlearn things that no longer serve me emotionally. I have had to learn to move past the illness phase in my life and learn to live in this moment. My husband and I married one month before brain surgery and as a consequence we have had to learn to how to coexist without the caretaker relationship that we had for so long. I also believe that pain and trauma changes you significantly and we've learned to embrace those changes. As a mother, I listen more, I've become more structured with my children though at times I push them hard, because I saw how quickly I could be taken away and I want them to be able to move forward should that ever happen.
Tamica Matos-Santana a mother of 2, arist, devoted activist and wife. She is currently pursuing a career in nutrition, a passion that grew from learning how to better use food to heal.
Favorite quote,
"At the end of the day, we can endure more than we think we can." ~ Frida Kahlo