This is a repost from December 2011 following my first neurosurgery. I’ve been trying to write something about my recovery from this most recent fusion, my seventh neurosurgery in four years. I am dealing with more disability, or as my counselor says, “different ability,” than ever. I have adaptive equipment to help me put my socks and pants on. I am thirty-nine years old, and the fusion I have now will not heal into a better place. I am stuck. The grief. The loss. The crying. It has been very difficult to write about. As many time as I’ve born my heart to you here, I feel like this is the ugliest thing I could show you. It’s important because it’s true. I know people read this blog for many reasons, but my target audience are people like me. They already know there are two sides to this journey. They know you can Hope in razor sharp suffering because it is our only option if we want to live.
This is a more humorous post about things we deal with in the Gauntlet. I hope you get a giggle. I also hope if you can showered without pain and dressed yourself today you feel a little more gratitude for simple independent things you may take for granted. If you are sitting in traffic or picking up your children from school in the annoying car rider line I hope you say Grace. If you can get groceries or clean your toilets try to be thankful. These things are lost to me, and I’d give almost anything to reclaim them.
Howard Hughes and Things I’m Missing
By Monica Kaye Snyder
I think I’m maybe just a little grumpy today. I figure I’m entitled to have a day or two when the barometric pressure reminds me this surgery is not a total fix for the complex medical issues I have, some of which will be a life long struggle for me, and I still just let myself go to a discouraged place for a little while. I’ve been trying to hard to focus on all the amazing positive gifts God has given and the healing. If I’m totally honest, I’ve even been playing the Pollyanna “glad game” to try and keep my mind/body connection moving in a forward direction.
I woke up this morning to cold rain and my head hurts. Thank goodness, it’s nothing like before, but still really bad, especially where those crazy screws were in the top. I think I’m still miffed I just never realized they were going to screw my head to something. How could I not have known that? My joints hurt. This is my EDS. I cannot be cured of this or even have it “fixed” in some way by a surgery. I will see the geneticist in Cincinnati in February to discuss management and possible treatments to help me deal with this ongoing pain. But realistically it’s just something God has asked me to do. Much of the widespread pain I had before my recent surgery has resolved, especially the neck and shoulder pain which was unbearable and crippling. I was cautiously optimistic because of all the drugs I have been taking. As I have been working on dialing back the medication this week, I still feel so much better overall than I have in years. This is good. Very good.
I think it’s the annoying little things about my recovery and new “disabilities” that I’m finding hardest to cope with and maybe just a little bit of loneliness for my husband and my kids and my space. Yes, I even miss my basement home and “bomb shelter” bedroom over this gorgeous light filled space, because it’s where my people are.
I thought I’d make a little list of things I miss. Maybe it will help ME to appreciate them if and when I ever get them back but maybe just maybe it will make YOU feel more sane and more grateful today and even make you laugh a little which is the best medicine, right?
1. Shaving. This is not a random choice for number one. I have not been able to shave since the morning of my surgery. I am Howard Hughes in sooo many ways and hair removal tops my list of OCD issues. I cannot in any way move my neck and head and body to shave. Last week when Dan was coming for date night I thought I would at least try to shave my armpits. To my horror I realized I cannot look over to the right and left enough to even see them. This is a problem, people. short of beginning a fund for laser hair removal or finding a stranger to come wax me periodically because a friendship would clearly be ended over this kind of interaction, I am in trouble. BIG trouble. I spend a lot of time thinking about how to solve this problem . . . SOON.
2. Tweezing. In the same vein, but also a critical part of my hygiene, I tweeze daily. I tweeze my eyebrows and any random facial hair and my one genetic chin whisker that pops out without warning. Again, I cannot move my face or head or hold a hand mirror or in any real way get this properly accomplished. It is making me crazy! At home I would climb up on our bathroom sink criss cross applesauce and tweeze. My husband and kids know if mom’s in the bathroom for more than a half a minute and if the door is locked this is my “me” time. One of my requests to Dan if I ever become a “vegetable” is please, oh please, have someone come and tweeze me. Last night I even forgot I cannot look down at my own body and see my own boobs. I was worried. Don’t worry, I don’t have “hairy” boobs, but you know how every once in awhile there is a hair that appears and needs to immediately be taken care of. It’s something women in our culture don’t just do. We take it seriously. We don’t speak of it even amongst ourselves, but it has to be done to keep the civilized world running. Well, I’ve outed us. Things are spinning out of control.
3. Caring for my feet and toenails, oh and clothes. I should have gone for a pedicure before surgery. It’s not like I could really even hold my head up or felt well enough to care but now I do. I would ask someone to drive me to get one this second. I would spend money to have someone else fix these rough feet with nails too long and polish grown out except for the above mentioned issue of unshaved legs. I would be too embarrassed to have anyone near my feet and legs to let them do my toes. Add on to this not wearing anything besides sweats and pajamas, ugly flat shoes and a pony tail for months and a self image problem emerges. Yes, I am so much more than clothes and hair and toenails too, but I’m the classic beauty, right? For years I have worn timeless clothes and beautiful scarves and simple jewelry which everyone wondered how I could afford when the truth is I probably bought them at least five years ago when I could afford them, but they are gorgeous still because they are classics. I haven’t bought real clothes in a very long time. I really want to be pretty again, not in the vain sense but in the “her clothing is fine linen and purple” way. Oh, and I bet that virtuous women had trim feet. I’m just saying.
4. Driving. I drove very little for months before my surgery because I had passed out a few times and frankly after seeing the 3DCT of what my neck looked like when I turned to the right or the left I realized I was most likely putting my own life and the lives of others in danger by continuing to drive. Not to mention I could barely get out of bed anyway, and we only have one vehicle. I have been home bound for so long you would think this would be further down the list but I REALLY miss being able to go putz for an hour at Marshalls or go to the grocery store and pick out what I want to eat. I’m so tired of wasting so much time browsing online sites for little Christmas stocking gifts I could just get at Walgreens if I could only go there. I wish I could pick Delaney up from school or take Danica to Chic-fil-A. I’ve had my driver’s license since the day I turned 16, and I have always associated driving with freedom and the ability to escape any situation when I need to but also make something happen when I want to. These things are gone now. I do not know when I will be allowed to drive again or how easily I will be able to with my new “range of motion.” I think about it a lot. If I get special big new “old lady” mirrors don’t laugh.
5. Drinking. drinking alcohol is a Christian liberty issue I’m in no way prepared to address here and certainly don’t want to get private emails or facebook messages about it. If I cause you to stumble dear brother or sister, I am sorry, and we can address that in a different forum. Technically it has been months since I’ve had anything to drink so it’s a non issue right now. That being said, oh how I miss having a glass of red wine. It makes me almost cry. Anyone who knows me well knows I always had at least a split in the fridge because at any moment something might need to be celebrated. Life and champagne are friends that must hold hands often. I really want to “Cheers!” something soon.
6. Cleaning. This is a little sick but then again if you’ve read this far you get the picture. I am desperate to clean something. It really hurts me to want to do this so badly and truly be physically unable. Now that I’ve been living here two weeks I’ve figured out how to swiffer the hard woods for “exercise” to avoid blood clots and yes, may empty my bathroom trashcan EVERY morning, but I want to vacuum and dust and clean my toilet, and I can’t. My own family has been taunting me about how they are living the life over there. Delaney tells me, “Dad let us make a big fort of blankets and pillows and animals and then we just went to bed and LEFT IT THERE.”
7. Tucking my girls in. Listen, all this other “coo coo for cocoa puffs” stuff aside, if you get to be there every night to tell your kids you love them, sing to them, read to them and tuck them in knowing they will be the first thing you’ll see in the morning, thank God. Don’t rush through it no matter how tired you are. In all my years of illness and pain this is the one thing I always pushed myself to do. It is the thing my girls are sure of. It’s the thing I will do long past when they want me to and the thing I’ll cry about every night after they leave for college or whatever else God might take them away from me to do. I snuggle in and talk to them and ask them questions about what made them happy or sad that day and we pray and we pick a sleep playlist, and I stroke their hair or rub their back, and they know, they know without a doubt, they are loved and safe and no matter what it’s going to be alright.
And you thought I wasn’t going to make you cry today!
About Monica Kaye:
Monica Kaye Snyder is a voracious reader. She is a blogger, a writer and maybe even an author. She continues a long journey of chronic illness and daily physical suffering. Some of her diagnoses include Chiari malformation, Ehlers-Danlos Syndrome, Tethered Spinal Cord, Craniocervical Instability, Postural Tachycardia Syndrome, Intracranial Hypertension, Mast Cell Activation Disorder and most recently PANS/PANDAS. She’s seen real miracles happen and holds on to Christ’s Hope as an anchor for her soul while living in great pain. She is wife to Dan and mother to Delaney Jayne and Danica Jean. She knows for sure if she does nothing else well in her life, this will matter and be enough.
SHARE YOUR STORY. If you are walking a Gauntlet or are close to someone who is and would like to contribute to our Thursday community please email me at firstname.lastname@example.org, and I will send you the instructions for submitting. Share with anyone you know who might like to join our Gauntlet Story Feast. (Please use the hash tag #GauntletStoryFeast when sharing so we can find and follow one another.) Our Hope remains.