chapter 4: pass the mayo.
after we got back from our amazing honeymoon in costa rica, we settled into married life in our downtown loft apartment. it was a really cool place... no doors (except for the front door and bathroom), brick exterior walls, super tall ceilings with exposed ductwork. i really enjoyed living there, it was perfect for us in our newly married status. she would love it when i would constantly toss her underwear up on the pipes and vents that were 12 feet off the ground. oh man, she would get so frustrated with me about that. she could not easily get them down and if she would, i would wait until a few minutes before guests would come over and toss them all up there again! of course, she was mortified about our friends seeing this awkward sight. but they all thought it was hilarious, especially when i would make jokes about being newlyweds!
those first few months were so much fun. we were both working a ton, but found a lot of time for each other and continuing to build our relationship. connected to our apartment building was this restaurant that had the most amazing steak i had ever tasted. i have such good memories of going on dates there and hanging out at a neighborhood coffee shop together. it felt like such freedom to be married and having a partner who was so much fun, especially one who loved God, and myself, so ridiculously well!
i do not have a specific memory of what day it happened, or what exactly happened. it was in early december, 3 months after we got married, alisha got really sick. the reason i don't really remember it is because i was certain that she had gotten the flu or something. she could not keep any food down at all. i don't even recall when i began to realize that there was something really wrong with her. she had always had strange health issues, but there was a sudden change and it was not getting better.
i am going to try to tell this story in a manner that gives good detail, but also limits the amount of grossness. i cannot guarantee that there won't be a percentage of people who will struggle with certain parts that i am going to share. sorry about that. i hope that you can hang in there with me.
i suppose the moment i realized that she was not dealing with the flu was the day that she had me run to the pharmacy to pick up something called an enema.
"ok, what aisle is that in?"
"i don't know"
"alright. i guess i can ask someone."
"you might want to just walk around and find it for yourself."
"huh. okie doke. i will just figure it out then."
when i finally found this item, it became clear why she gave me permission to not ask an associate for help. i stood in the pharmacy, looking at the cartoon figures of how this particular item worked in disbelief. all i could think was, 'i hope that she does not need help with this.' i went up to the cashier unsure if i should avoid eye contact, or remain in constant eye contact throughout the transaction. pretty sure i chose the first one, but honestly it was all a blur that particular night. thankfully, i went home and she went into the bathroom and closed the door.
what was going on with her was that her guts would get clogged with food and not be able to move it through. so anything else that she ate would come right back up because there was no room in the inn. we started seeing doctors to try to figure it all out. they would recommend laxatives, stool softeners, and of course enemas. that last one, the embarrassing one, that is located on aisle 14 at walgreens, actually worked with some limited success. but it was super uncomfortable and painful for her.
i remember her laying on the floor of our bathroom in just pure anguish. i would come in there while she was waiting for the effects to set in and just hold her. i would tell her stories about the abstract images that looked like objects in the pattern of the tile. there was one particular splotch that looked like a lion. when i pointed it out to her, she told me in a very tired voice, "oh, i like that lion... i'm a lion. i am strong. i am just like a lion." i could not agree with that statement enough. i knew that she was strong, but i was beginning to learn just how strong she really was.
we continued the search for doctors who could help us. that's when we found dr. presti, a very kind and knowledgable GI doctor. he had such a good bedside manner about him and was an expert in his field. i did not realize at the time that this was such a rare combination. so often doctors who are really good at 'doctoring' are terrible with patients. i don't know why that is, but he was exceptional at both. he spent a lot of time with us explaining what he thought was happening. he labeled what alisha was dealing with as a intestinal pseudo-obstruction. this meant that her guts were being obstructed, but not because of a kink, a tumor, or scar tissue. he explained that is can be a condition in and of itself, but he felt like there was a bigger reason for this to suddenly onset.
he told us that he could run a bunch of tests to try to identify what was happening, but wasn't sure if they were the best equipped to run all the tests necessary. dr. presti then gave us the option, and suggestion, of going to seek some answers at the mayo clinic in rochester, minnesota. this did not seem exciting to either of us, but it did not take much convincing to make the decision to visit this world-renown clinic.
i was pretty limited on how much time i could take off work at that point. i had used all of my vacation time for the wedding and honeymoon a few months earlier. so we made plans for her to go up there and built a schedule of amazing volunteers who could stay with her when i could not. we were warned that mayo works differently and has a unique team philosophy than most hospitals. for instance, almost no one stays at the mayo clinic; there are tons of hotels there that cater to patients, most of which advertise free shuttles back and forth to the facility.
people at church donated unused hotel points for us to be able to stay for however long this expedition was going to take. our community was completely behind us in finding the answers we needed. this gave us so much confidence as we headed off to the great white north, knowing that people were supporting us in a multitude of ways, including fervent prayer.
when we pulled into rochester, it was hard to settle in. probably most of it had to do with nerves, but it was peculiar how this entire town seemed to be filled with sick people. it seemed like a cruel joke to send sick people to minnesota in the middle of winter to get help. the first several days that we were there in late january, the average high temperature was -10 degrees. it was miserable.
the day of our first appointment, we left early to make sure we could find where we needed to be. the mayo clinic is a gigantic facility, that felt completely overwhelming to both of us. thankfully, we found where we needed to be in enough time. we checked in at the counter, and they gave us one of those light-up coaster looking pagers that you get when there is a wait at applebee's. we found a couple of seats together amongst the crowd of sick people. alisha looked so panicked, she revealed that she did not want to be there, that we could go now. i assured her that this was exactly where we needed to be.
after a grueling wait, our pager finally went off and we were promptly taken back into a room where we were told that a doctor would be with us shortly. it was good to be away from the crowd, it really seemed to put alisha at ease. finally the doctor came in. he introduced himself to us as dr. arkin (full disclosure, his name isn't dr. arkin... but he kinda looked like 55 year old version of alan arkin, so i am going to use that name. as you will learn shortly, i probably do not have kind things to say about him, so it's best if i don't use his real name).
dr. arkin sat down, informed us that we would only have 15 minutes together, and then asked us to let him know what problem he could help us with. this irked me a bit because we had to send our files up to the clinic before they would agree to see us, so it felt like he should already know what is going on from dr. presti. it was obvious how busy the clinic was, so i assumed that he probably did not have time to read everyone's file ahead of time.
we gave him our quickest and best rundown of what was going on with alisha while he took notes. he did not seem surprised or even curious about anything that we were sharing. after he had heard enough, he began to ask her some questions about her history. i couldn't really help her on that stuff, so i mainly stayed quiet. she explained that her mom and dad probably should not have been in the same state, let alone having children because their DNA wasn't a good match. i thought that was really witty, so i laughed out loud. dr. arkin did not find that funny and gave me a look that put me in my place. what she was trying to setup is that her sister had some really strange health problems as well. her's are very different from alisha's, but it's significant intel none-the-less.
he asked her a few other routine questions about her education, current living situation, and relationship with her mom and dad. it all seemed to go fine, he just needed to unveil a plan of getting tests done and meetings with other doctors. he clicked around in a computer for a couple of minutes and then handed us a printout of a schedule. he told us that there were going to be about a dozen or so tests and doctor meetings that he wanted her to do over the next few weeks. most of the tests had awful names like anorectal manometry. it was hard to look at that list and imagine the gamut of terribleness that she was about to experience. the toughest part was that i was not going to be able to be with her during the majority of these tests. only a couple of them were scheduled immediately and could be done on the same visit, but she would have to come back with other people who could afford the time up there.
before we left to head back down to st. louis, we met with dr. arkin's fellow (another doctor who worked beneath him), and he suggested that she make some adjustments to the schedule based on the results that we already coming back on the first couple of tests. i was impressed by the recognition of what was going on, they didn't like what they were seeing so they decided to call an audible and change the plans! the big thing that they added was a therapy called biofeedback. which is basically coaching on how to control your bodily functions. we agreed that this would be something she could add to the schedule for when she came back up.
the drive back down to st. louis was hard for us— she was going to come back up to the clinic within a few days and she was scared about all the things they wanted her to do, i really felt like i was letting her down. also, it's hard to imagine, but there was no facetime back then... the first iphone was not even a thing at that point. i would obviously call her a ton, but i knew that i needed to shower her with letters on a daily basis. that's what people did before smartphones, they wrote letters. it was crazy back then!
after she left with her sister to head back up to minnesota, i listened to the same cd on constant repeat. the album beneath medicine tree by a band named copeland gave words to a lot of the things i was feeling during that time. the lead singer wrote many of these songs during the midst of his girlfriend recovering from an illness that hospitalized her. the words captured a pain from having no control to help like nothing i had ever heard before. so, with every letter i wrote alisha, i included a lyric from that album that we both loved, but probably hadn't connected with to that level previously.
"I'll bring to you whatever you need
I'll tell you I'm sorry
That I can't take this pain away from you
I'd put it on my own body
If I knew how to, can't you see?" -excerpt from the song testing the strong ones
that album can still break me to this day. i remember trying to google what happened to his girlfriend that caused the inspiration for this album, and their website specifically stated that people should not want to dig into that, aaron (the lead singer) is still not in a spot to talk about it. i could relate with that so much.
while alisha was doing all of these intrusive and horrible tests, i was at home feeling the weight of grief. the topic of grief is an interesting one to me. what i have learned over the last several years is that grief is a habit, a learned behavior that we lean on during times of suffering. at the time, i was not super aware of this habitual nature, but i was definitely living proof of this.
when i was about 10 years old, my parents started the process of what seemed like a painfully complicated divorce. it had always felt like there was chaos between the two of them, but everything ratcheted up when they realized it was finally over. prior to that, i had almost never seen grieving happen, no one modeled for me how to do it well. i would feel all the feelings when everything went down between them, and i began to grieve the loss in the only way i could determine— i shut down. i felt so ugly about my emotions that i essentially went mute. i would almost never talk in a given day. at school, i would answer my teacher if they called on me, because i did not want to be rude, but otherwise i completely kept to myself. i would sit in the corner of the playground during recess by my self. after school, i would leave as fast as i could, and head straight home and go to my room. often, i would hide in my closet because it felt safer somehow. i can now identify that i was depressed and had no outlet for recovery, but back then i just hated myself.
i am so thankful that Christ has redeemed me and helped to transform me in the way that He has. it always surprises people when i tell them that i used to be mute, because i am very different now. but when alisha was away and i started to feel the loss and the scared feelings, i began to duplicate a lot of those same habits, i started to "closet" myself off emotionally. it was not healthy. i wish i could say that i was able to identify what was going on and sought some help, but i didn't. it wasn't as bad this time, but i definitely sought safety in my "closet."
every night, she would call me and recap what the day was like. i am pretty sure that i was a good listener to her, but because of my coping, i offered very little encouragement. this was not fair for her, especially as she was entering the tougher parts of her schedule.
biofeedback was unbelievably embarrassing and challenging for her. this therapy can take on many different forms as they seek to literally give feedback on how to properly use whatever muscles a person might be struggling with. this particular biofeedback was focused on helping her expel what was getting clogged. alisha unaffectionately named her biofeedback "poop school."
no person should ever have to go to poop school. we typically learned what we needed to learn as a toddler, and for most people that knowledge would create habits that would last for nearly a lifetime. a girl in her 20's should not have to be retrained on how to defecate.
i don't know exactly how to share this without being disgusting.
alisha would spend hours a day sitting on a false bottomed toilet seat while a woman would camp out underneath her and watch/coach her technique. her rear end was attached to monitors and this poor woman would analyze the data and give her step by step coaching on which muscles to use and which ones to relax. i realize that the word analyze is dangerously hilarious to use here, but that is truly what happened. this was horrific for alisha, and i can't imagine it was fun for the biofeedback analysis woman... whatever her salary is, it's not enough!
alisha would call me crying every night about how mortified she was and how defeated she felt that she was literally failing butt school. she could not translate the coaching into changes. she would sob while telling me how broken her body suddenly was. she could not seem to control any of her muscles despite the very clear coaching she was receiving.
the only time during that stretch that alisha had any kind of hope in her voice, was after her sister suggested a potential cause for all of her problems. alisha called me really excited that her sister, angie, who was staying with her at that time, noticed how loose and soft her skin was. alisha's skin has always been incredibly soft, but none of us realized how she could grab a section of skin and pull it away from her body like stretch armstrong. after googling 'loose skin disease', angie shared her concern that alisha might have ehlers-danlose syndrome. this is the disease that contortionists (people who can bend themselves in just about any position) have. it's a localized hyper-flexibility in the tissue caused by a lack of collagen. normally, i would not suggest diagnosing illness based solely on a google search result, but this time it was surprisingly helpful.
alisha met with the fellow to talk about this potential and he decided that it was worth her sitting down with a rheumatologist, so he booked that appointment. when she walked into the room with this new doctor, the very first thing he said to her was, "hello, ehlers-danlos!" confused by this greeting, she was not sure how to respond. he quickly explained that her physical features made it clear to him that she had exactly what her sister theorized about. he was not prompted to this conclusion, he could tell by her height, build, and facial features. he had her pull on her skin, which delighted him to see that he was this good at identifying this with simply a glance. before she could even sit down, he had her stand along the wall of his office with her arms straight out, were he would measure her wingspan by marking the tips of her fingers right there on the wall, in pen, just like you would do to memorialize a child's growth spurts.
this doctor was able to identify within a manner of moments what was causing all the issues within her body. her looks, her skin, her abnormally long arms, all pointed to this syndrome that manifests itself in a multitude of ways in different people. some people have it localize in their joints, her's seems to have focused on her abdomen. it explained the strange physical issues that she had learned how to deal with all her life, as well as what suddenly happened to her that december. it was a major breakthrough for alisha who was starting to feel like she was crazy.
when alisha was completely done with the schedule she had been given, it was time to go see dr. arkin again. i did not want to miss that appointment as he was going to deliver a verdict of what they could do to help her. i headed back up to minnesota, and it was so good to see her! she had been through so many hard and humiliating tests; she needed me back up there with her so badly. i am not sure that i have hugged someone so intensely in my entire life!
when our appointment with dr. arkin came, we did the same process with the applebee's pager. while we were waiting, alisha told me that it's going to be a long time before she can handle a wait at a restaurant for fear of having a post-tramatic reaction. finally, our pager went off and we were ushered back to the same small room as the first time.
dr. arkin came in, sat down, and awkwardly stared at us. it was uncomfortable. i so wished that dr. presti could be our mayo doctor, this guy seemed challenged in his ability to interact with patients. finally, started the meeting off by saying, "well, i think you are a ruminator."
"what does that mean?"
"it means that if you got some counseling, your physical problems would probably go away."
"so, you think i'm nuts?"
"no, not nuts. i just think you have not dealt with your past well and it is causing your body to have some issues."
i had never seen alisha with an expression of pure anger before. i thought she was going to explode. i wanted to say or do something that was going to make it better, but i could not determine anything that would help. i considered punching dr. arkin, but thankfully that's not really my style. with us being newly married, i was not sure how to advocate for her. she handled herself great and did not really seem to need my help, but my lack of fight on her behalf remains one of my greatest regrets in life.
she asked him what would lead to the conclusion that she is a ruminator. he told her that since she was abused by her dad, this was the most logical conclusion— he declared that he had seen this a ton. her anger started to hit an epic peak, as she explained that her dad is a bad dude, and he was abusive to her mom... but he wasn't abusive directly towards her. he wasn't a loving father, but this did not cause her guts to suddenly stop.
she began to ask him about all the different tests that he ordered, the failed biofeedback, the ehlers-danlos. he was completely clueless about the results, he opened her chart and was clearly looking at the results for the first time. he would remark about certain results and say how remarkable or interesting things came back, but he finished up by saying that he was now out of time and that if she needed help finding a counselor, his office would be happy to provide references.
she told him that she would gladly go to counseling if it would make any difference, but she's done that already, and has gotten a lot more emotionally healthy as a result. i agreed to that statement, that was about my only participation of the meeting. she filibustered him for a few minutes, refusing to let him leave without providing other options. but he had none. he had made his conclusion during the first 15 minute meeting several weeks ago, and nothing was going to convince him otherwise- no test results, no diagnoses from other doctors... he had made up his mind.
we left that meeting, that clinic, and that town as fast as we could. i felt awful for her on what happened. mainly, i felt defeated because i could not manage to get myself out of the closet for a few minutes to help defend alisha to this doctor. she needed me, and i was no where to be found. that was an exceptionally long drive back home.
i tried telling myself that i just need to shake the dust off of my feet, like paul and barnabas in acts 13, and just move on. but i could not do it. i was so stuck on the regret of not taking action. this was the first time that i began to realize that there is no response that keeps us from hope, like regret. it's one thing to be fearful, which i was, but it's a totally different thing to live with regret. this was going to be a hard lesson to learn, but hope can be found in suffering... i just needed some help in that.