Intracranial Hypertension

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Intracranial Hypertension
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    Accepting Your Physical Limitations as a Parent With Chronic Illness

    I’ve been sick for a while now, so I went through the acceptance and grieving process a long time ago. I would even tell people that it was through acceptance and gratitude that I was able to deal with all the things that come with being chronically ill. But no one ever told me that I may have to continually go through that process of acceptance. I recently had a baby. Since that time, I’ve found myself having to accept all the things about my illness that I thought I had accepted years ago. For instance I haven’t driven a car since 2014, and until now, I didn’t even think about it. I figure out how to get everywhere I need to. I know I can order a Lyft or ask a family member or a friend for a ride. But now, I’m relearning to be OK with the fact that I don’t drive. I have to be OK with the fact that I’ll never be able to pack my son up and drive him to the park. To sit in the dreaded pickup line after school and take him home. To simply go on a drive alone. To drive him to pick up a gift for his dad. None of those things will happen without someone’s help, and that makes me sad. There’s nothing I can do about it, I will learn ways to get out with him alone, but it does make me sad. I’m learning how to accept the limits of what my body can do. I learned a long time ago that I can’t physically do everything. There are times when I have to take a break. There are events I can’t always make it to. I’m not able to jump on trampolines and hang upside down on jungle gyms. I was OK with all of my symptoms — until now. My son may want to do things that I may not always be able to do. Even at this age, chasing his quickly crawling self around the living room is physically exhausting. But I’m learning to be OK with my body again in spite of its limitations. I remind myself my best is all that I can do and that it’s OK to not be OK. My son will love me regardless, and he’ll see that his mommy always tried her hardest. I don’t have to be at 100 percent every day — I just have to be there for him. In my son’s lifetime, I will likely have to have major surgeries to treat my intracranial hypertension. It scares me, and it’s a fear I didn’t have before I had my son. I knew I would need surgeries eventually, and I even asked for them at times. I was OK with the fact that multiple brain and spinal surgeries were in my future. I’ve gone through this process 15 times, but recently, I’ve had to accept it all over again. I have to accept the fact if something were to happen during one of these surgeries, my son could lose me. I also fear that I will lose my vision and the ability to see my son. I’m in a phase of accepting that parenting — which already feels like the hardest job in the world — is likely going to be even harder for me. This phase is something my able-bodied, healthy parents can’t necessarily understand. When you become a parent everything often changes, but in my case, some things are changing, and others are staying the same. I have to remember that it’s all OK. My son won’t care how we get to the park, and he won’t care if I’ll have to use my cane in order to play with him. He will love me through my surgeries — and any side effects that may arise from them. No matter what, everything will be well, and my son will have all he needs. I will always do my best, I will learn to adapt in every situation, and we will have an amazing life together — even if it looks a little different from others’ lives with their children. Hopefully my adaptation in life will teach my son to do the same — no matter what life throws at him. I hope you remember that acceptance — like healing — isn’t linear. You often can’t just decide one day that you have accepted something and then the process is over. Life will change, circumstances will change, and you may need to reevaluate your feelings in new ways. Change may force you to go through the acceptance process over and over again, so don’t feel too discouraged when you struggle with acceptance. Face the situation, and do the work to accept what you can’t change. Accept your situation for what it is, and make the best out of it whenever you can. Remain positive and thrive — however that looks for you.

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    Feeling Like You're the Underdog in a Movie With Chronic Illness

    Many of us find relatable characters in movies, TV shows, and books. Often, the most relatable characters are the ones who have struggled a lot. They’ve often experienced a type of heartbreak that has completely broken them open. We may hold their hands through their vulnerability. We may cry with and for them. We may root for them when they are their most torn-up, torn apart, and decimated. Most of the time, the part of their stories that we identify with is when they are stripped bare of all the things that made them comfortable with themselves, and they have to learn how to accept where they are and keep moving forward. I’m still trying to figure that process out. I’m pretty sure almost all of us are. One of my friends was born with a disease, and there were years when she was stripped of the people and things she loved. She was stripped of the things she was able to do previously. She had no choice but being left in the wake of the struggle, still having to figure out how to live a life with purpose. She celebrated her 16th birthday in the hospital. She’s grown up in hospitals, had heart attacks, had surgery, may have felt “bare” against her circumstances and pain, and she is now in school pursuing a degree in engineering. She now can help those who, like her, have endured pain and loss. She wants to create things for others so that their loss won’t feel as large as hers may have. She is an extremely independent person who might understand how painful it can feel to not be able to do the things that everyone takes for granted. She has a creative perspective that will enable her to have a career that will make living a full life accessible to everyone. I also have a friend with intracranial hypertension who has had brain surgery to put in a shunt. The shunt helps drain extraneous fluid from her brain so that she doesn’t have potentially fatal migraines and she also doesn’t go blind. When facing the loss of your physical capabilities, it can be super easy to become angry and bitter with the world, to hide away from people, and to become a curmudgeon. But this friend of mine works with little kids all day, every day. She loves their energy and is happy to watch them grow. She has also fallen apart and may struggle to appear to be “whole.” Most days, she can fool the world, though. She aims to live life at the edge of her seat. She has a bold streak in her that allows her to go skydiving and plan to swim with sharks. Her character is laden with love, empathy, and protectiveness. I myself have lost the ability to hold my camera for more than 10 minutes without my wrist, knuckles, and fingers emitting a burning pain and eventually turning red and throbbing. I have lost the ability to go to sleep and be able to stay asleep the whole night. Often, I wake up at around 3:00 a.m. and deal with a myriad of pains that make comfort or sleep impossible. I have electric shock pain in muscles throughout my body, joint pain that makes crying a normal part of my day, serious migraines, difficulty walking, and the energy level that an 80-year-old might have. But I’m not giving up. I’m pursuing photography and learning more about graphic design. I want to learn more about my passions, and I want to work. I write when I can. I’m learning how to push myself and be OK with the consequences because I get to feel like an “average bear” for a little while. My friends and I may be firmly planted in that time in the movies when our audiences might be crying with us and simultaneously pumping their fists in the air. It’s a real William Wallace moment. Our pain may take up a lot of our lives, but it will never take away our hope or our determination to live our lives to the fullest. We all may get caught up in our lives, especially the “William Wallace moments,” when we may feel invisible and helpless. In these moments, we may have no idea what in the world we are doing or how to accomplish what we want to. In those moments, I’m pulling for you.

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