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To My Younger Self, Prior to Spine Surgery

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Dear Tracy,

I want you to listen to this before you undergo major spine surgery. Your back is about to be properly aligned for the first time in 28 years. You will document your journey from the moment you wake up from surgery, until the present. This surgery will change your life for the better. It won’t seem like it in the beginning. With time, things will improve. Your goal to walk again will become a reality. Because of your strength and determination, you will succeed. I want to prepare you for what is about to occur. You’re going to hear the good and bad from this experience; be prepared for the blunt honesty. I will provide tips on how you can help yourself and rise above.

First of all, bravo for surviving this surgery. You had your L4/L5/S1 fused, and spinal decompression surgery; in a nutshell, there’s rods, bolts and screws. The pain is torture. In time, it will improve. You will not be able to stand or walk.  At the time, two physical therapists will hold you up, as you try to stand; your legs collapse, you can’t feel them. Think of a baby giraffe trying to use their legs for the first time. You will not have sensation from the waist down. While in the hospital, you vocalize that you do not have sensation. At this time, your voice will not be heard. Keep speaking up; you will be heard eventually.

Seven days later, you will be transferred to an inpatient rehabilitation hospital. The ordeal is a nightmare. This is the time period you will have to use your voice. You will be neglected due to limited staff. People will describe you as a zombie. Unfortunately, you were over-medicated.  As frustrated as you’ll be, don’t give up you’re goal to walk again. Do not listen to anyone who doubts your capabilities. As usual, you will get through hard times. When the pain feels unbearable, look at photos of your nephew; he will make you smile and forget about the pain. Your motivation is your inner self, your soul. Please keep listening to me.

Ice cream will be your comfort food, as your appetite is limited. Certified Nursing Assistants, CNAs, will be on the hunt to find you vanilla ice cream; some of these incredible humans will show your best friend Ashley where the secret stash is kept. There are certain nurses, CNAs, physical therapists and occupational therapists who truly care about you. They will be there to celebrate your victories, and I will too. For example, when you shower for the first time since surgery.

You become grateful for the little things. You will realize it when you’re discharged from rehab one month later. At this point you are using a wheelchair. When you get home, the house will be decorated with pink and purple streamers; balloons will be tied to the banister, and there’s a cheesecake sitting on the kitchen island. Your childhood best friend, Ashley, will be standing by the door; a “welcome home” sign is taped to the garage door with pink and purple writing. You will  grab her and cry. Tears flooding your face, “thank you for helping me get through this. I love you so much.” Ashley’s eyes are red, with tears running down her face. These tears are from happiness, “I’m finally home — exactly where I needed to be.”

The first night home will be terrifying. You can’t use your legs, and that realization occurs now. You’ll think to yourself, “what the heck is happening?” After being home for two weeks, you meet with your spine surgeon for a follow up. The rehab you were at for a month never communicated to your surgeon that you were paralyzed from the waist down. Yes, you read that correctly. This is the first of many times your doctors never communicated with one another.

You will be on bed rest for a month, and you will have cabin fever being stuck at home. Doctors continue to toss your case in the air; no one knows what to do. Depression hits you, and you feel like you’ve hit rock bottom. At the moment, you feel hopeless, trapped, alone and lost. At points, you will isolate yourself. The concept of walking doesn’t seem realistic; however, you refuse to give up. Each day you remind yourself, this will get better. I promise you the light at the end of the tunnel is coming. Take this time to focus on yourself, especially your mental health. Reach out to support systems, work with a therapist, self-care and energy work will help you greatly. Focus your energy on writing; pour your heart out in a journal. The physical and emotional pain is temporary. It will improve.  You will learn who your true friends are.

Your loved ones will support you through this difficult time. Your heart will hurt when some of your closest friends don’t reach out to you. Honestly, Tracy, forget them. The only person that matters is you. If you don’t take care of yourself, then how can you help others?

You will be bounced to different providers, where no one knows what to do. Think of the card game 52 pick up, where you throw the cards in the air and watch them land on the floor. This is the analogy you’ll use to describe your medical situation. It will feel like a disaster. You will be told to prepare to use a wheelchair permanently, but you’re willing to do whatever it takes to walk again. It will get harder to process all that will occur. You remind yourself, “This will get better. One way or another, you will get out of this wheelchair.”

You will meet with your neurosurgeon in September, and she will explain why you are paralyzed. The cerebral spinal fluid in your spinal cord shifted after the most recent spine surgery. When this occurs, your brain rewires that your spinal cord is still tied to your tailbone. You will feel at ease once you hear this; finally, someone can explain why you woke up from surgery paralyzed. Feel proud that you never stop speaking up for yourself; your voice was finally heard. You will ask your neurosurgeon her thoughts about walking, and show her the video of you trying to stand and walk when you were in the rehab. Tears roll down her face as she watches your hips trying to dislocate while you attempt to stand and walk; there are two people holding you up. She can’t answer your question regarding walking, and tells you to think about the surgery to have peripheral nerves cut. Listen to your soul, Tracy. Do not give up your fight to walk again.

Providers will inform you, that you’ve run out of treatment options. You are told the only option to treat the spasticity, is cutting the peripheral nerves in the back of your knees. This will stop the spasticity; however, it will not guarantee the ability to walk again. You will tell yourself, “hell no, this is not happening!” There have to be other options. Trust your gut, and keep looking for answers.

Eastern medicine will play into your recovery. You will work with an internationally renowned holistic healer, focusing on energy work. You will be skeptical at first, but you will do whatever is necessary to get your life back. After working with him, you notice a major difference the next day; your depression improves. You will notice your creativity enhances, both with writing and art. You have more energy, and realize you need to continue working with him. He comes to Boston monthly, and you will have the opportunity to work with him four separate times. He will guarantee by Christmas you will be walking. You will tell yourself, “challenge accepted. Walking, here I come.”

You will travel to New York in October, to attend a weekend intensive wellness retreat with this holistic healer; this will help with your mental, emotional and spiritual health. Your family and friends support you on this opportunity. Two of your childhood best friends help with transportation. While you are at the retreat, you will navigate a campus that is not entirely wheelchair accessible. There are certain buildings you can’t get into, and only two bathrooms have grab bars; those bathrooms are in your room and the dining hall. You will meet kind-hearted humans who will help you while you are there. You will advocate to the staff at the retreat; it’s unacceptable that you can’t physically get into certain buildings and most bathrooms aren’t compliant under the Americans With Disabilities Act. You will leave this retreat feeling hopeful; anything is possible. Listen to your soul, things will continue to improve.

You will pick up your custom back and hip brace on November 8, 2019. Don’t worry, I made sure the brace will look trendy; it will be zebra-printed and have black padding. You will surprise yourself, Ashley and the orthotist, as you will walk for the first time. This brace will give you the ability to stand without your hips dislocating. There isn’t a dry eye in the room when this moment occurs. Your soul was right; you will walk again.

Please give yourself credit for how hard you have been working. Never underestimate your abilities. You have proved to yourself and others that you will accomplish anything you set your mind to. Healing is not an easy journey; however, you will learn a vast amount about yourself. Take a deep breath and understand there is a light at the tunnel. I promise you, things will get better. Remind yourself, “losing is not an option.”

Originally published: February 24, 2020
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