October is here and so is Sharon Coyle-Saeed’s monthly blog post! Make sure to check back in November for her next post. Looking for Sharon’s post from last month? Click here.
Happy reading everyone!
Buried or Birth?
By: Sharon Coyle-Saeed
October is my birthday month. It is also the time of my Advanced Internship as a Master’s student of Social Work. A woman at my internship who also has two sons, asked me yesterday, “You write for the paper, you are in school, you have two kids under the age of 18, how do you do it?” It was a great question.
The answer is: I finally accepted that I have limitations. Oh gosh yes, I hate to admit that. I despise it. It feels like defeat. It feels like I am sitting shiva for that self. Worse, it feels like my body has won. I still remember that girl pre-Inflammatory Bowel Disease. Sure, I had episodes in my childhood. They were short lived. I am talking about “THE TIME”, the one when it came, and did not leave….EVER.
That girl. The girl with so many dreams, boundless amounts of energy, involved in theater (most times several shows at a time), dance lessons of all kind(ballet, tap, jazz, lyrical), vocal lessons, hanging out with my girlfriends, all this plus, working a paper route and a children’s shoe store in the malls of New Jersey simultaneously. Guess you can say I have always been a Type A, or maybe restless energy, or perhaps in a positive outlook, driven. Then, it all stopped. Ended. Just like that.
I am reading this book by Paul Kalanithi, “When Breath Becomes Air”, a memoir of a neurosurgeon who was diagnosed with Lung Cancer and transitioned last year. These words of his struck home, “One chapter of my life seemed to have ended, perhaps the whole book was closing. Severe illness wasn’t life-altering, it was life-shattering” (Kalanithi, p.120).
This disease, like my iPhone screens (which I can’t seem to not break) shattered my life as I knew it. I was always a list maker. A planner. I had a step by step list of how I was going to be a working musical theater actress in New York City. Every single detail. The day I was hospitalized and diagnosed, my life was never was the same. No more plans. Due to illness, I could never keep them anyway. I still hesitate to make any plans. It hurts too much to hear the disappointment on my friends and families faces and in their voices internalizing that I am not wanting to spend time with them.
But, there was more to just longing for those days. It was longing for my health. Moving one’s bowels once a day! YES! That is something I will never know again. Being able to not think about food, water, resting, and bowel obstructions. I miss being completely ignorant about hospitals, what a ringer bag is as opposed to a regular saline bag, knowing what a PICC line is and TPN. I found it very disturbing being able to know when a co-worker asked a nurse regarding an infection in the body and being able to mentally answer, “sepsis”, and only knowing that answer because in the past five years, I have had personal experience in acquiring this not once, twice, but thrice. Yeah, it is during those moments…you really don’t feel good to know those bits of trivia.
So, I coped with denial. And as Dr Phil’s favorite question pierced through my ears like a singing bowl, “How is that working for you?” It wasn’t.
Last month, on September 9 to be exact, I was discharged yet again, from JFK Medical Center, my local hospital following a bowel obstruction. My body was not ready to go. I was. I begged my doctor to release me early morning due to a meeting I had with my field supervisor at an internship that was postponed for one year due to major back to back abdominal surgeries in July 2015 and April 2016 at Columbia Presbyterian, NY. I was NOT going to allow this disease to take this away from me too. It is a hospice internship, and I am just so blessed and grateful to be able to be present for those transitioning and their caregivers. It is a passion of mine to help others. Then the realization struck me. I need to help myself in order to be able to serve others.
That is when I accepted I was not Sharon, the girl pre-IBD.I had to bury her. Yes, I have her memory, very fond memories, and she will always be a part of me. However, she is not who I am today. I am Sharon, post-IBD, post-proctocoletomy, post-small bowel resections, a very active J-Poucher (10-12 times a day), chronically anemic, chronically low potassium, stubborn concrete bowels due to adhesions, and prone to quick and severe dehydration/electrolyte imbalances. And that is OK! I had to bury my old way of taking care of myself, and give birth to a new way of thinking.
To answer the very good question put before me yesterday, how do you do it? To be perfectly honest, I am struggling. Every day is a struggle. The other day I stood on my feet for hours(over 5) while making copies and did have to eventually pull up a chair. It is very challenging when you look visibly well, yet, your body is screaming something different. This year alone, I have been in the hospital 40% of the year (this is actually an improvement from 50-60% of the year since 2011). I crash on the weekends and during the week, I find my eyes closing by 9:30 pm. I must admit I am counting down the weeks till Winter Break.
I am also trying, to the best of my ability, to understand that I can not have the McDonald’s, the Dunkin Donuts or other munchies. I pack lunch and snacks. For the most part, I am eating a very clean diet and take vitamins religiously.
The greatest motivation? What keeps me going? My patients. Every day they are holding on. Each day is a struggle. For some, every breath is a struggle. I went into this internship as a servant…..a giver….and little did I know how much I would be receiving. When I do not think I can go on, the image of my patient who drools and can’t wipe her mouth as she can’t move her arms that are all coiled up, or my patient who is so frail that they stopped weighing her at 75 lbs, or my patient who passed on a Wednesday and I was so sure I would see him on Friday. He has reminded me that we are never promised a “see you soon”, “see you later”, or a “see you on Friday”. Yes! I am living in the moment. In the now. This is the only moment that truly exists. The old Sharon is in the past. I can only ring in this birth month with the body I have today, the health I have today…..and today is a good day.
How do I get through every day? By living and appreciating and being grateful for every single moment of every single day. That is how I am getting through the day! Carpe diem.
Sharon Coyle-Saeed was diagnosed with ulcerative colitis in 1990. She has three Associate degrees in Psychology, World Language, and Theater. Sharon’s Bachelors is in Journalism & Mass Media with a Middle Eastern Studies minor from Rutgers University. She is currently a graduate student of Clinical Social Work at Rutgers University with a focus on Aging and Health. Sharon just completed an internship at Robert Wood Johnson/The Steeplechase Cancer Center. She is a Reiki Master Practitioner, a freelance reporter for Gannett NJ, an IET Intermediate practitioner and holds certifications in EFT (Level One), Angel Card Reading, Angel Realm Reader and Aromatherapy (Stress Management, Essentials and First Aid). To help others is her sole and soul’s desire.