These are my words…

keep calm cleft

September is Craniofacial awareness month. A month, and cause, near and dear to my heart. I was born with bilateral cleft lip and palate.

I have written a lot about my cleft lip and palate experiences on this blog. The teasing and questions, the procedures, surgeries, scary moments, and, believe it or not, there is plenty more where that came from. From it all, I have received a great gift. A gift that cannot be seen or touched. And hopefully one I will never have to return.

 Gallows Humor for Survival

Yes, I have one sick sense of humor. You have to in order to survive what I went through during my formative years.

One story, in particular, is a perfect example of me laughing in the face of some scary stuff. I was probably between 12-14 years old. I was in the pre-operation area where, many people meet you, the doctor, nurses, and anesthesiologists. My mother, father, and brother were there, while I sat on the gurney in a johnny waiting for the anesthesiology intern, or resident, to come by to start the IV. Or more accurately, treat me like a pin cushion. It was a woman this time around, not a dreamy, male doctor in training. She had the tray filled with all the supplies and looked official. You had to give her that. Then she began the all to familiar process of starting the IV: swab the top of the hand with alcohol, put on a tourniquet, then unsheathe the needle, pray she can find a vein in my dehydrated state, and jab me with the giant needle. All the while, I am looking away, talking to my family, glancing at the ceiling, looking at the curtain separating me from another patient, and denying the pain. It should not hurt this much, but it does. She missed it. She tries to move the tube around after the needle is out. Medical folks, if you are reading, this never works. She tapes it up and walks away. Now that the resident and her needle are gone, I look down and all I see is a pool of blood all over the bright, white sheets covering the gurney. I look over at my brother and say, “Huh, what a rookie.” The next nurse that comes by tries to deny that it happened by covering it up (oh the irony) with a blanket and some towels.

There are waiting room stories, medication stories, fellow patient stories, and so many more. The best stories are always funny. Those are the stories that I remember the best. They have turned into private jokes in our house. I love that I have this ability, and it would not be possible without the help of my parents. They are some funny people.

I use dark humor today

Today, I take the gift of gallows humor with me everywhere I go. I need it to survive the tough times. Humor has allowed me to be resilient in the face of adversity. Give me an awkward, sad, scary, or uncomfortable moment, and I find a perverse joy in it. Those of us who have been through a lot cling to whatever it is that keeps us strong, for me that is laughter. Scientists and psychologists say that laughter not only can improve your mood, but can also change it. You must be mindful and fully present to make the perfect joke at the perfect time. Guess what, mindfulness helps improve mood, too.

I’m proud to say I have the joker up my sleeve, not an ace. Aces are too fickle; they can make or break a hand. The joker, however, always wins because he has a smile on his face at the end of the game.

Craniofacial Awareness Month is almost over. I told myself that I would write more posts this month that relate to the experiences I had growing up with cleft lip and palate, so I could build on the amount of content I had before approaching a publisher about the book about my life. I guess you could say that never happened. As the month comes to a close (and as a last ditch effort to make good on my word to myself), I give you one more chapter in my “book-to-be-published-and-named-later.” See what I did there; tomorrow is Major League Baseball’s Trade Deadline for 2014. 

2812 ear

Eighth grade was quite the year. I was 13 years old and had two major operations ahead of me, one in November and one in May of that academic year. The one in November had doctors hoping they could graft my perforated ear drum. Yes, that is right, there was a hole in my ear drum. Thankfully, there was no pain. I suffered many ear infections as a baby and a toddler. I would have tubes put in to assist the poorly constructed Eustachian tubes. The tubes were supposed to aid in the proper draining of the ears. The tubes would either be removed later, or would fall out on their own as the tissue grew. Ear tubes are a normal kid thing, but the ear infections and odd draining pattern of my sinuses were far from the norm. Remember, I was born with a bilateral complete cleft lip and palate. The holes in the palate traveled up into the nasal cavity. Everything was a wee bit shifty in the whole maxio-facial arena, so the sinuses were surely off in their own way, too, forcing mucus to travel and get stuck mostly in my ears and down my throat. The left ear took the brunt of the ear infections’ damages. In the end, I had hearing loss, which the audiologist and otolaryngologist were concerned would worsen. On the bright side, the left ear drum did drain well with the hole present. Still, the doctors were not as thrilled and wanted to intervene, and make yet another attempt to make me whole.

I go in for the surgery, which of the two that I would have that year should have been the less dramatic one. It was not; this ear surgery would be life altering in the cosmic sense. The surgery slated for May would be a bone graft that lived up to all the ominous warnings and exultations that patients and doctors claimed it would be.This skin graft should have paled in comparison, but that was not to be.

Everything went according to plan that day until the end. In the recovery room after the surgery something must have gone wrong. I wasn’t conscious. I was semi-conscious, so all of this could be completely inaccurate, but this is what I remember.

I lay in what I believe to be the half of my own room on the 10th or 11th floor of the hospital building. People are all around the bed, but I cannot see them. I can see blurry, static filled air, and can hear voices calling my name. I come to consciousness, only to get sucked back into a warm, fuzzy, seductively, sleepy state that I know has danger written all over it. It is too good to be true. I fight to open my eyes even though I cannot see. I fight to breathe even though every inch of my body, especially my lungs, wants to ignore my brains demands.

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The breathing device must have looked something like this one.

Someone, a nurse, yells my name too loud, and thrusts a tube, a large tube to my lips, and tells me to blow real hard to “make the beads move.” I can only hear the beads; I can’t see what I am doing. She tells me I need to move the beads up. I don’t know which way is up. I just want to go to sleep only I know I cannot. I know I will die if I do not fight. I hear my mother’s voice, my father’s voice, and my aunt, too, is in the room. I have to fight even though the alternative feels so good. I got to keep breathing, blowing into the tube held by the nurse who keeps yelling my name, commanding me to blow out of my mouth as hard as I can. I do it. I fall asleep again, quickly, force myself to come to, lose consciousness again, force myself awake a second time. The cycle begins again, only to be interrupted by the nurse’s yells. I blow into the tube again. I hear the beads. When I open my eyes, the world looks like it has been smeared with a heavy coat of Vaseline.   I fall unconscious, come to, blow into the tube. This repeats itself for what seems like an eternity. The only bright lights I see are the ones above the bed. They make me squint.  This is a good sign. I know I am not going to die.

As eternity passes I come to back to consciousness more and more, slowly, but surely. I keep fighting one breathe at a time. One breathe at a time, I get closer to winning the campaign my brain has been waging.

At thee end of it all. I believe what happened that day was that narcotic pain medication was administered before the anesthetic, which was given to me in both gaseous and liquid intravenous form, had worn off. Thus, overdosing me on two potent chemicals at the same time, nearly killing me. Yes, I felt death come and try to take me. Those moments of fighting to get my breathe, still hold as the scariest time of my entire life.

And I do not see that changing any time soon.

Oh, and the ear drum. After all that the skin graft never took. The ear is still perforated to this very day. I have hearing loss in my left ear, but it is not bad. Actually, during college, and even today it is not such a bad thing. If I lay on my right ear, I can not hear much. You can party it up all you want next door because I cannot hear you. Sometimes when low, staticky noises are present while people are talking I have a hard time hearing, but that is about the only loss there is.

I love taking photographs. I rarely photograph people.  My muses tend to be the beach, nature, flowers, architecture, and other structures. I found this photo while looking for some images for an art show I hope to enter. I took it many years ago at a bar. I shot the couple surreptitiously with my iPhone. I think I captured something special between two people.

It was a fun find as I flipped through my collection of work, looking for images of the beach.

 

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I’ve been meaning to write a piece on a former orthodontist for a while. I hope it is a start toward another piece of what will become a book one day. I have many hospital related tales to tell and so little time. Here goes something…

braces

It’s funny, you meet people and interact with them on a regular basis, and never imagine your relationship will end. This was especially the case with Dr. B. It never occurred to me that I would, one day, never see him every month, or every couple of weeks. He was a fixture in my life from about age 12 to 26.

The bilateral cleft lip and palate team, during the time I was a patient at the hospital, did not have a psychologist on its team. They did prior to my time of care. It did not matter for much of the time I was treated for my cleft lip and palate issues because I had Dr. B who helped me with these self-esteem and interpersonal issues.

Dr. B. was a person who unknowingly helped me develop my social skills. He allowed me to be snarky, funny, and smart. I felt like I fit right into the world in a way that was not fully realized when I went back out onto the sidewalk or back to school after our appointments.

Wit

Dr. B would love to bring in the dental students and show off his hard work inside my mouth. I would say funny things as they “ooo’d” and “ahhhh’d” as Dr. B explained what he had accomplished. He moved my teeth around quite a bit. In fact, he even twisted one into a straight position, which was his great bragging rite to the students. I remember saying something along the lines of, “he’s pretty great, right?” or “what a guy?” to the five or more gathered students. This happened on more than one occasion. It made me laugh because I always predicted the explanation by Dr. B and the reaction by the students. And I am sure he knew what I was thinking every time.

Self Esteem and Mutual Respect

Most people do not look forward to going to the dentist, but I did, and to some extent still do most likely due to this wonderful, caring doctor. I knew I was going to laugh, show off my quick wit, and converse on just about everything. Many of the others that worked at the clinic treated me like a peer, as if I worked there, not as a child being treated. This was a clear sign of respect. I knew I had value in that environment, so I knew I must have value in the other places, too. When you have a facial difference, the reinforcement of your value in the world is significant to good mental health.

Allies

I’m sure I talked about friend and peer situations at school with him, and I’m sure Dr. B gave advice, but nothing specific comes to mind. He was a paternal figure in my life that I knew I could count on. You have to have allies when you are different. Whether it be your skin color, or your sexual orientation, you need to know people are in your corner ready to support you.

Resilience and Teamwork

Thanks to Dr. B, I was able to experience pain with some grace and dignity. Many times we both knew it was going to hurt, but we got through it together. I would always close my eyes tight and moan, and he would encourage me to just hang in there to put a little more pressure on those teeth he wanted to move. This was a lesson in resilience. An incident with his colleague, Dr. S, who I also love dearly, illustrates another great example of resilience, and learning to lean on another in time of mental and physical strife. Dr. S. wanted to take some impressions of my teeth to make a mold for one contraption or another that would eventually land in my mouth. Unfortunately, during this series of impressions (a process that is miserable to begin with) some of the composite, or gunky material that would make the mold of my teeth, got pressed up, in between my mouth and my nasal cavity. I was born with a complete bilateral cleft lip and palate, which means that the oral and nasal cavity are not separated by tissue and bone in certain locations. Dr. S. tried, and tried, and tried to get the composite out with the high-powered suction, and an explorer for over an hour. It was extraordinarily painful for me. Finally, both of us were exhausted, pasty white, and waving the white flag of surrender. I got up and felt the need to blow my nose. The composite came out my nostrils. Dr. S and I were shocked, gobsmacked, with our jaws wide open. When my mother arrived at the door to the treatment room she could not believe how tired and white we both looked. And there were many more times with Dr. B. where resiliency and the “we-are-going-to-get-through-this-together” attitude helped us reach the finish line.

If I had enough fight in me, and was resilient for all those procedures, what could the world possibly throw at me inter-personally that I could not handle? A lot. But I got through it.

Dr. B always saw the beauty in me. He never questioned me the way I questioned myself. Am I fun? Am I interesting? Do people even want me around? No, Dr. B did not question those things at all. I learned that I was fun, interesting, and that people do want to be around me. How did I know? He treated me as a friend, not a patient. He showed me my worth by how he chose to interact with me. His example spoke louder than words. This is one of the greatest gifts a person can give to another that by all outward appearances is different.

He was the dentist that tweaked my teeth, my self-esteem, and my life. I will always be thankful for these gifts. Thank you, Dr. B.

 

 

Flower Power: Up Close and Personal

Up Close and Personal, Sunday, June 22, 2014. Please see more of my photographs on my flickr stream at https://www.flickr.com/photos/27325898@N05/

I enjoy making cards, and prints of any size. Let me know if you are interested.

Summer Sunglasses, Sunday, June 22, 2014

Summer Sunglasses, Sunday, June 22, 2014

art supplies

I am creative. Recently, though, I have not made it a priority to exercise those creative muscles in my life, probably because I am too busy working out, or gaining inspiration from the reality TV show du jour.

I want to draw more, paint again, and maybe learn to knit or crochet something. I believe it will calm me and prove a way to meditate while “doing something.” I am not one to sit in the lotus position, and get everything to be zen.

The arts engage all of my mental and physical forces into one activity. I’m not exactly sweating to the oldies, but there is a level of movement involved that is necessary for me to get closer to a peaceful state. Those of us with rapid fireballs of thought being tossed about in our heads need to engage in something physical to help calm the mind through matching it with a similarly intense body-based activity. Exercise forces the mind to focus back in on the body, and away from the barrage of thoughts and cognition that are just that…thoughts. Even though I may not be lifting weights, or playing tennis, my body must be engaged in something like drawing, painting, knitting to bring my awareness back to my physicality. In another words, to remind myself that I am not my thoughts. I tend to get stuck on them. They are fleeting, but like thousands of flaming boomerangs, they come back again, and again, and again.

 

I know this works. A few weeks ago I tested it by sketching. I entered the activity as I would a meditation. I focused on my pencil touching my hand, touching the paper. I noted the color on the page, and smelled the colored pencil as the color appeared. Everything was done non-judgmentally. I observed. I described. I let my brain rest. The thoughts cleared out because I was focused on the activity at hand, much like I focus on my body when I move around the tennis court.

I want to start practicing these mind-quieting activities by choosing those which I have supplies. I have pencils, paper, watercolors, acrylics, oil pastels, etc. I have an abundance of art supplies. If I give myself 10 minutes here, or 20 minutes there, at the end of the night to wind down with this type of meditation I know it will help me sleep, improve control over my mind, and the anxieties of daily life.

I will let you know how this experiment goes in a future blog post.

 

 

All photographs and writing Copyright Kara Jackman. All Rights Reserved

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