So, let’s say you get the news, like I’ve gotten twice.
“You will need surgery” -stated while you are sitting with a neurosurgeon looking at an MRI of your brain.
When you finally regain your senses, which might be a few days or even weeks later–because when you hear those words, in that context, you hear nothing else, feel nothing else and can not fathom thinking of or caring about anything else for a while.
However, you do reach a point where shock wears off and the reality of the situation actually sets in.
You actually realize you say things like, “my neurosurgeon this….” or ” my neurosurgeon that…..” .
Then you realize you have reached this elite pool of people…the brain surgery people.
You are, in fact, a brain surgery victim, a brain surgery survivor, a brain surgery warrior.
Actually, you can be all three of those things within the same five minutes, one minute crying the next rallying and still, the next minute you are bullet proof.
Regardless of who you are today, or where you are in your journey..I’ve been pondering a new Top 10 list. Things I found useful the second time around. These things kept me sane. I hope they do the same for you.
Here we go-
Make sure these TOP 10 things make your TO DO List (even though, I know, you won’t feel like doing anything-Do these anyway!!):
1. Love yourself. -Rest as much as you need to. Many of us put on the happy face, or the stoic face, or even the brave face. We take visitors when we don’t want visitors, we take phone calls when we don’t want to talk, We eat things we don’t want to eat. We are kind and polite to pretty much everyone but ourselves. Stop it! I’m not saying to be mean to others..but make yourself a priority, and they will follow your lead. Yes, our diseases challenge us, but they do not make us unlovely. We do not become unworthy, unsightly or undeserving. You are literally in a battle for your life. YES- your body makes your life challenging, but don’t get caught up in self-hate. There is a fine line when we call ourselves Chiari Warriors and Chiari Fighters. We call Chiari the enemy. We become disabled, unemployable and dismayed. We lose jobs, friends, spouses…all because our bodies are malformed. We are laughed at, called hypochondriac’s and told what a burden we are. The Bible tells us that we are “fearfully and wonderfully made.” I believe that. (Perhaps that’s why we are often told, “You don’t look sick”-because we are so wonderfully made!) So yes, we are at war with ourselves. Our bodies are our enemies! Talk about your dysfunctional families! Think about it- How do most wars end? Either there is a victor that obliterates its foe or after many battles a peace treaty is made. I am in favor of the latter. I refuse to be mad at my brain (although I do often mutter to myself, “stupid brain!” when things are not going my way, which I now vow to you I will cease to do) any longer! The way I see it, my brain is a fighter! My brain has been defective, compromised, squished, it’s stem bent and kinked since birth..and I still managed to go to school, homeschool my children, become a registered nurse. Save lives, have friends, be a friend, fall in love. I think my brain is pretty darned phenomenal! How can you not love a brain like that I ask you?
2. Take pictures, pictures, pictures and more pictures.– Brains surgery is a hugely stressful event, it’s a life event like birthdays and weddings. Like birthdays and weddings, this will be an emotion-filled, action packed ride. Now, clearly, it’s not as enjoyable as birthdays and weddings, but if not immediately, you really will eventually want to look back and see what you looked like with your head half-shaved and what your zipper looked like. You are a warrior..document your battle, do it for yourself and for others that need information and encouragement. You survived this battle. Much like dealing with the school bully- you didn’t choose this battle, but you didn’t back down either! I now wish I had professional photos done of both of my zippers. I know that may sound creepy creepy..but I think they could pass for some pretty interesting wall art-especially in black and white.
3. Follow your gut.– A friend of mine recently had Chiari surgery, her incision looked red and inflamed early on, however, when she called her doctor, they said she was fine unless her temperature was greater than 101 F. Well, a few weeks into recovery, she suddenly spiked a 102.4 F temp, went to the ER and was rushed into emergency surgery. VERY DANGEROUS! I love my friend..and I want her to be well. I love myself and want myself to be well. Too many times I’ve not called a doctor or sought medical attention because I thought the Dr. would think I was crazy or a hypochondriac. So, I stuck out the horrible headache or having my entire left side numb for hours. I didn’t want to be the crazy girl calling too often. I didn’t want to have to pay another medical bill. I didn’t want to be whining AGAIN! I’ve literally had hours of blindness in one eye, but never called the doctor. I just waiting for my vision to return…when honestly, I should follow my instincts and CALL THE DOCTOR OR GO TO THE ER! ALL is not Chiari!
4. Talk/write about it all you want.- Obviously, I write about it more than I talk about it…mainly because where I live I don’t really have any face-to-face friends or family. The friends/family I do have I tend to lie to or just ignore their calls or texts so I don’t have to lie. I know, for someone who is such a stinking liar, I’m asking you to believe I can give honest advice. Let me put this into context..
A Mississippi acquaintance texts me as I’m laying in bed, on pain meds with an ice pack: How are you?
Me: I’m good (but thinking: I feel like hell)
Mississippi Girl: I’m glad, I’ve been so busy the past few days. What have you been up to?
Me: Not much (but thinking, What the heck do you think I’ve been doing? I had brain surgery for goodness sakes, I’ve been in pain for the past 3 weeks straight, in bed, alone, crying a lot.) Mississippi Girl: Well, I hope you are better every day! I’ll text again when my life slows down. I’ve just had so much of my own stuff to deal with.
Me: Great! Thanks for checking in on me! Hope things calm down for you soon. (but thinking, That was totally useless waste of my time and energy. She’s always busy and makes me feel like she’s doing me a favor to just say hello..and I’m not much better- I always lie..so it was pointless. and now I have sharp eye pain from looking at my phone, GO ME!)
See, what I know is that it’s good for me to write or talk about it. What I also know is that most people don’t want to hear it, read it or take the time to understand it. They don’t want to know how bad the pain can be or how alone I feel. They don’t want to know how afraid I become sometimes just thinking about what my future may or may not consist of. I know they don’t. Like I’ve said before, they “CAN’T HANDLE THE TRUTH!” (said using my best Jack Nicholson voice). So, I encourage you to find your outlet, if it’s journaling, or blogging or a support group or even just one special in-the-trenches-with-you friend..you talk about it all you want…this is your prerogative, it’s your right..it’s even your DUTY to not silence that voice in you that needs to be heard!
5. aka the second part of #4. Be tolerant of those who know not what they do. After you just read number 4, I need to make number 5 a disclaimer. Those sweet, well-meaning people who ask you ridiculously shallow questions that make you want to scream. They truly know not what they do. I have many people in my life that have no idea what I go through and I would never tell them. Do you think if the Jews really knew who Jesus Christ was (and STILL is!!) they would have crucified Him and treated Him as they did? Now don’t get crazy on me…I’m not saying any of us are equal to Jesus Christ and that our well-meaning friends and family are crucifying us…so don’t go there in your mind. The parallel I’m drawing here is that most people set forth to do good. Very few people in the world wish to do you harm or to be insensitive or abrasive. As I was packing a few weeks ago, many people posted on my Facebook page to not “over do it” or they stated how they hated moving.. One of my Chiari friends text me and said she was ready to let those people have it, that she was doing her best to be nice- I was not offended- but she took up an offense for me! –See, I knew and still know those people, my friends, family and acquaintances, they meant well. I believe that. I also believe that they don’t know what it’s like to use your arms to fold clothes, which causes pain in every muscle of your neck and sends sharp pains into your head, or how that reaching upwards hurts all the way down your back and looking upwards makes you dizzy and that you aren’t supposed to lift over 5 pounds, but nothing left to be packed weighs less than 5 pounds and you are on a deadline…They mean well, they just don’t know. In order to practice positive self talk and not get resentful, or let my precious-loving-yellow-gravy-eating Chiari friend loose on them–
It helps to make up a little chant, or a song about times like that…maybe to the tune of “Row Row Row Your Boat”..
They mean well but they don’t know so give ’em a bit of a break-
Struggle but smile and carry on, Don’t whine about the pain-
(I really hope you sang that!)
I do anything I can to be tolerant, turn the other cheek and to receive things at face value. The truth is, many people are afraid of us and they do not know what to say most of the time. They don’t know you are aching for someone to come sit with you, hold your hand and just be there. They don’t know the isolation, fear and dread you go through. They mean well they just don’t know.
6. Allow yourself to grieve. I suppose this could go with being kind to yourself..but grieving is different than kindness. You are going through, or have just gone through something horrendous. Your life has been threatened. Your life has changed. The life you had before is over. O-V-E-R…
OVER! I’m doing my best to impress this upon you because you will need a reason to explain to yourself why you are so down at time, why the sadness comes in waves that you cannot control. You will tell yourself, “Quit crying. Be grateful. So many other people are so much worse off.” and you’re right, many people are worse off. Many. Hundreds of thousands go without food everyday, people are maimed and beaten, tortured and dying. Some have no clean water, others await organ transplants. You don’t have to look far for someone that has it worse off than you. SO WHAT?!
Am I saying I don’t care about famine, disease, sex trafficking, cancer? Absolutely not! However, what I AM saying, dear friend…is that YOU matter too. YOU matter! YOU are important! Your career being affected by your illness matters! Your friends not asking you to lunch anymore because you had to cancel twice before because of headaches matters!Your way of life being altered, either by your physical status or because now your income is slashed in half…matters! You will never ever be the same. You will always feel that scar when you shampoo your hair. The beginning of every headache will set the tone for how you will get through the next few hours, or the next few days. If you are like me, you will be afraid to swallow some foods, or speak in public for fear of choking or not being able to get your words out. Allow yourself to grieve for those things. Weep, sob, scream…be mad, be in denial..eventually you will come to acceptance. You may never stop longing to be able to ride 4-wheelers with your kids again…or to ride a roller coaster, but eventually, you will accept it—-if you allow yourself to grieve. Don’t stuff it down inside or mask it with a pill. When moments arise that you identify as different now…grieve..it’s okay, if you need permission, then permission is granted. Think to yourself, “It’s my Chiari and I’ll cry if I want to, cry if I want to..” (yes..sing this one too).
7. Practice saying “NO!” (and be okay with it). Homeschooling my children was one of the best times of my life. I was active in our church, our 4-H club, our homeschool group. I took meals to sick people, I volunteered to teach, to lead, to pick up, to drop off, to fund-raise, to make bird-feeders, to plant seeds. I loved to say, “Yes!”. I was eager to help, to give, to be of service. I had luncheons, dinner parties, sleep overs and camp outs. Perhaps it’s easier for me to say, “NO” now because I didn’t back then. Or perhaps it’s because we are empty-nesters, our children are ages 30, 25 and 21. We don’t have the same affiliations or obligations that we once did. No one has soccer practice or a cheerleading competition. However, what we do have are jobs, business obligations, business partners, friends and family. We prioritize based on what we have to do now. I am aware that I can not do what I did before. My daughter lives 5 hours away now. Do I want to go see her? Yes, very much. Am I comfortable driving 5 hours? No, I’m not. I’m not comfortable driving the 5 minutes to work. Do I feel bad that I don’t visit her as often as I like? Yes! Do I beat myself up about it? Not anymore. We text or call each other every day. She knows it’s difficult for me. I know she has school and work obligations, so we accept how things are and visit whenever we can. I’m thankful that she understands, so I don’t have to say “no” to her. An acquaintance of mine wanted to drop by after surgery, the time wasn’t convenient for me- so I said, “No”. My acquaintance does not realize how some days are more difficult than others. I can’t help that. I do what is best for my body. Over obligating myself is good for no one. Recently she said to me that our lives are different, she’s constantly busy and I have health problems. She says she has no idea what I go through. I made no reply to that. My life is very busy and a very delicate balance of work, rest, pain and dizziness. I make no explanations or apologies. Neither should you. When in doubt-Just Say No!
8. Get connected. Find a support group either online, in person, or both. No man is an island. Your husband may be a fabulous as mine, he may listen to every moan, groan and whimper. He may be sympathetic, empathetic and a modern day saint. Your best friend may be one for the record books, he/she researches, studies and really cares about you, your illness and your overall well-being. Your family may be carved from the lost episodes of “Little House on the Prairie” where every little thing that happened to one family member affected all family members and a loving solution was always found. If you have one of these situations, count yourself blessed. However, I know many people who agree with me in saying there is nothing like looking into the eyes of a fellow Chiari or Arachnoid Cyst patient and seeing the understanding that is there. Bonds form quickly in these situations, suddenly, you aren’t alone and you have a tribe. When I was diagnosed I was working in a Pediatric PACU (post anesthesia care unit), I made a point to go in and talk to the little Chiari kiddos and their parents–the compassion was overwhelming, when I told them I, too, would be having surgery and that I, too, had Chiari-the temperature in the room instantly changed. At age 44, I was instantly connected to 5 year olds, 8 year olds, 13 and 15 year olds. We “got ” each other. I implore you- get connected-if not for yourself, go do it to bless someone else.
9. Make a plan. I’m sorry, What? You read right, make a plan. Don’t let this thing “happen” to you.
Make a plan. If you have a plan, you are in control. A plan for everything. If the kids (or in my situation-pets) may need care for an extended period..plan for it now. Freeze meals. Plan what you will eat after surgery. If your church offers to provide meals, that’s awesome…you could ask the coordinator if perhaps some of the meals could be made prior to surgery so you can stow them in your freezer. Who will go the the pharmacy post op to get your medications? When will you return to work? What will happen if you can’t return by the allotted time? What if you can never return? How will you financially survive? Look in to home businesses like mine. This was our “Plan B”– now it’s Plan A. I work on it more days a week from home than days I go to my regular job..because I don’t know what the future holds for my career, but I feel better knowing I have a plan. Who will drive the kids to school or you to the doctor? What will you wear? Who will do the laundry, grocery shop, change the toilet paper on the toilet paper roll. (this is very important become some of us are married to people that don’t know how to change the toilet paper…just saying) Plan, know what is happening next, regardless of the situation. I wrote letters to my husband and both children prior to each surgery. I put them in a place that would not be easily found, then I confidentially asked someone that is not terribly emotionally involved with me to notify them where to find the letters should I not make it through surgery. I did this both times. This gave me peace. I planned. I made an Advanced Directive. Morbid? Yes-but I knew I had been responsible, faced it and took care of it. I continue to plan every day. When I had difficulty swallowing the other night…I looked into Paleo-friendly shakes and smoothies. I’ll be prepared should that become a more permanent problem.
10. Laugh! Probably the most important thing you can do. Have you lost a some of your hearing like I have? I always say people sound like the teacher on Charlie Brown, “wah, wah wah wah wah, wah”.. Do you have peripheral vision loss? So do I! I have a continuous bruise on my left shoulder from running into the door facings. Now I say out loud, even if no one else is home..”Who put that door there?” Do these things make me want to cry? Absolutely..and I have given each of them their due grieving…and then I learned to laugh. I recently met a lady that suffered lack of bladder control due to syringomyelia, so at a young age, she had to purchase Depends, just in case–
She laughed and said she wished they came in a “thong style” brief! I love her take on her life and her illness. My hair is a nightmare. I do complain when fixing it, but now I say things like, “This is the most expensive haircut I ever had, looks like it could’ve been a little more flattering!” (I have to laugh, my bill arrived for the last brain surgery, $77k–now THAT was an expensive hair cut!)
So, I suppose this concludes my list. Lengthy, I know..but please refer to #4. I’m happier when I say what I’m feeling. As always, send me your thoughts and comments..I’m sure I missed something you think should be added to the list.
Happy Sunday! Be Well!