chapter 1: living that virtuoso life.
like every good story, there is the potential for multiple different endings. this story will have a good ending, even if it's not the ideal one. as a Christ-follower, i truly believe that. despite all the junk that has happened, God has been present and He's been so good to us.
unlike every good story... i'm not going to start at the beginning. i am going to start with today. it was a rough one.
for about two years, alisha has been getting this treatment called IVIg on a weekly basis. it is an infusion therapy that gives her the antibodies from 1,000 different people's blood work per dose. for the health issues that she has (which i will get into later, i promise... i want to share our full story well, but that includes a few cliffhangers to keep you reading), this therapy is a little experimental for her exact issues, but it has done pretty well for her overall. unfortunately, it has some side effects that make her feel like she's got meningitis each and every week. but the physical cost on her body that comes with it does not come close to the benefit the treatment provides. the upside is that her health has largely plateaued since starting this therapy and this is a significant thing for her.
if i were to chart out what her health has looked like for the last 11 years, it would look like the sales history of polaroid cameras. those things are still around somehow, but who is buying them?!? her 'health chart' would be one giant dip after another with short periods of plateaus. but, IVIg has kept her out of the hospital for the most part and flattened the downfall she was experiencing.
while this treatment has not been the miracle that we have wanted, or prayed for, but it has been good for her. it's helped her immune system a ton. it has slowed down the neurological issues that were getting out of hand, like dropping stuff or falling. it has helped her maintain her weight and made her less worn out. it was been nice to have parts of my wife back.
i suppose that it is just like anything, you don't realize how good you have it until it is gone.
by the end of 2017, alisha was getting 3 doses every 2 weeks of IVIg. the meningitis stuff was still there to some degree, but it was manageable— keep the lights low, don't shout, and let the napping happen. we were getting pretty used to the routine and looking forward to possibly increasing the dosage. there was hope that instead of just slowing down the plummet on the health chart, we would potentially see her make an improvement. there has only been two seasons of improvement (which i obviously didn't chart, but will share about later), but could this therapy help her put some real weight back on and get a little healthier? there's only one way to find out... we've got to try.
unfortunately, that's when her insurance company decided that this treatment is not medically necessary.
fighting with insurance companies is the worst. it is something that we have done plenty of over the years. the worst part is that they refuse to talk to the patient through the appeals process. they will only talk to a doctor... they do not want to run the risk speaking directly to the person this affects because then the insurance representative could begin to make decisions based on compassion rather than financial feasibility.
the process that every insurance company mandates is what is called a peer-to-peer appeal. your doctor talks with the doctor that works for the insurance company and makes the case for why the treatment is, in fact, medically necessary. the staff doctor might not have any expertise or knowledge of the disease or treatment, they might be a podiatrist (nothing against feet doctors, i am sure they are lovely people... but what do they know about alisha's disease?).
we had to do a peer-to-peer appeal when alisha first started IVIg. they declined to pay for the therapy off the bat. but after hearing the case made by her doctor, they decided that they could approve it, but only as a pharmaceutical. since that was better than nothing, we decided to accept that and move on. the unfortunate part of them considering it a pharmaceutical was that we would have to pay up front for our portion in order to have the treatment each week. if they would have considered it a normal medical good delivered though a hospital (which it is), our payouts would have been minimal and could be paid retroactively like most other bills. this appeal win cost us a lot of money, but at least it was a win.
this time however, the insurance company decided that they will not even talk to doctor on a peer-to-peer basis. all communication would be done by fax. personally, i cannot believe that fax machines are even hanging on for dear life, like the polaroid. but they are, and the insurance company is making the best use of them.
this process will take 2-3 months at the very least. so much for that nice season of plateauing.
fortunately, the hospital had some sort of clerical mistake and found three vials of IVIg that had been paid for, but had not administered yet. alisha started to slow up the pace of the treatment to milk that gift. instead of getting 3 units every 2 weeks, she has trickled down to 1 unit every week and a half. that slowdown of antibodies has caused some surprising and sudden reactions, kinda like trying to slide a stick shift into 2nd gear while driving at highway speeds.
within a few weeks, alisha's pain increased a ton. she is literally the strongest person i know... especially when it comes to pain management. i am 100% convinced that when she says that her pain level is at a 6 (out of 10), that everyone else, including me, would consider it a solid 9. the things that i have seen her endure lead me confidently to that conclusion. that girl is crazy strong!
the other day, she called me just so she could cry. i sat there on the other side of the phone panicked. i couldn't figure out if i should just stay silent and let her cry, or if i should try to comfort her. i feared that if i tried to say something she would feel like i was trying to move her through the emotions quickly as if her pain is not worth my time. i just sat there fighting back my own tears. that kind of stuff does not happen often with alisha, but when it does it hits me in a unique place... it feels paralyzing.
speaking of which, she has had a lot of strange neurological responses since slowing down the IVIg. her arms and legs will randomly and uncontrollably twitch and claw up like a t-rex with severe carpal tunnel. if her limbs are doing that, i can only imagine what her nerves throughout her body are doing. she has had a lot of intense spasms as well that seem to be exceptionally painful. on nearly a daily basis, i will be sitting down with her in our living room when she'll stop talking, make a terrible face, stare off into nothingness, and then start to groan. she's having some kind of spasm— bladder, bowel, back, legs... some location where there are muscles that decide to freak out in the most painful means possible.
when that happens, i want to go hold her, but that does not help the situation, so i just watch her do this strange dance on the couch. she told me that if this continues, she is afraid that she is going to have to start using a wheelchair permanently. our house is the opposite of wheelchair friendly, so i don't know what to do with that.
here's something you need to know about me— i can be a very negative person. it is super easy for me to play things out to a disastrous 'natural conclusion.' we need to move. i'm going to need to quit my job to take care of her full time. i need to write a book to afford this treatment for her, but i'm a terrible writer and no one will read this and i would have wasted all that time that i could have made good memories with her, but i didn't so now she hates me and i'm going to have to live with that after she's dead, and i'll have all these words haunting me forever and ever reminding me how gigantic of a failure i am, and maybe i'll get hospitalized for complete insanity, which might not be so bad because i would get 3 meals a day and probably nap a lot.
sorry you had to read that.
now that all that is out there, let me tell you about today... i was planning on dropping off alisha at infusion and heading off to work, but she wanted me to come up and pray with her. that definitely felt like something i could not refuse her on. we got up to the check-in desk, where she typically just waves to the staff and they wave back to indicate that they will send someone out shortly. alisha is treated like family there. she spends so much time at the infusion center that she knows every single person: what their favorite coffee is, how their relationship is with their spouse, when they are having a bad day without even uttering a word, and generally 3 secrets about them that they have never shared with anyone. That is the type of person alisha is. The staff loves her and she seriously loves them!
back to today... the gal at the front counter didn't wave at alisha today. she was on the phone, so i could not tell what the problem was, but she simply frowned at pointed down at her desk. after she got off the phone, she told alisha that she had a form for her to sign. alisha knew what it was as she had already used up the bonus vials they had found, and there had been no update on the appeal. tears started to fall immediately and i had to hold her up so that she would not fall to the ground. i was a little confused about what was going on, but that was not my concern at the moment. when she finished crying, i realized that the soaking wet form that she was holding was her official notification of insurance denial for her IVIg. the form included a handy indicator of the retail price of treatment. the price tag was brutal. doing the math in my head, all while holding her and praying for her; there is no way that we can afford even the slower pace that she's been doing, let alone what she was getting previously... let alone the dose we were going to bump her up to.
at that same time, my phone was ringing and it was our lawyer. *disclaimer: i love to be real and authentic... but this is NOT the topic that i want to be real or authentic about. i want to skip this part of the story. i knew what he was calling about. he had received all of our paperwork and gotten all the facts straight. he wanted to know if he can go ahead and file chapter 7 bankruptcy for us today.
as a pastor, i am very convinced that one of the best ways that we display dedication and discipline to the Lord is with how we handle our finances. there are an unbelievable amount of verses in the Scriptures that deal with money. i personally love the parable of the talents from matthew 25; it is a story that combines our treatment of money, our ability to be a good servant to our Master, and achieving our goal of stepping into the joy of the Master. i know i am supposed to pay off my debts. i know i am supposed to live a generous life. i know that within ten days from now, i am going to give the money talk to the lifegroups at my church.
i know that this makes me look like a giant hypocrite.
i also know that people will tell me that we had no choice: the treatment was expensive as an approved pharmaceutical, the other medical bills were outrageous, keeping alisha alive is expensive, your career path won't make you wealthy, you are doing the best that you can, God knows your heart in this.
i still don't like it. i feel so guilty.
alisha and i have been in this process for several months at this point, and i would tell her all this and more about how i felt about declaring bankruptcy. she has always been good to remind me about those truths about our situation. but like i said earlier, i am a super negative person... i can nod and tell her that i agree with what she was saying, but that doesn't mean i really believe it on the inside. sometimes she could tell. so she would pry more to see what else was laying below the surface.
about six months ago, we went to hawaii and had an amazing trip. we went on a snorkel expedition, we rode on a helicopter, we rented a jeep, we ate 1,247 shaved ices. as the kids say, 'it was lit.' some folks at our church gave us money towards the trip, which i suppose softens the blow of 'you're an irresponsible and sinful jerk.' but we obviously could have used that money towards our bills. alisha tells me that we have to live sometimes. that we have to choose to have fun and make memories. i think to myself, "oh yeah, i remember that part of the Bible... don't forget to have some frivolous fun." sometimes my sarcastic inner dialogue isn't helpful.
so, here i was in the waiting room of the infusion center, feeling the weight of bankruptcy and a signed off notice of insurance denial. i just wanted to run away.
that is when i noticed the magazine on the coffee table in front of us. it's called virtuoso life. how is that a real magazine? this particular copy was from august of 2013. i am not sure how that is even possible. had that same magazine sat there for over four years? i have sat in this chair, at this coffee table so many times, how have i not noticed virtuoso life? what an insane publication!
as i sat there flipping through the pages of gold-plated everything, tips for playing polo in buenos aires, and stories about investing in rare oversized pieces of artwork; i realized that i am so far away from living that virtuoso life.
none of the stuff that has happened with alisha's illness has been fun or fair. but instead of letting it make me bitter, i think it has made me better. i am (hopefully) far closer to living that virtuous life than the ridiculous counterpart i had just learned about. living with virtue and faith is not easy, especially when you are dealing with suffering.
suffering is the reality of this life and our world. things are broken and are not the way they should be. i actually think most people believe that, even if they do not believe in God. sure, dealing with a sick spouse is really challenging, but we all experience suffering to different degrees and for varying lengths of time.
i meet with guys all the time over coffee to connect with them as their pastor, and they almost always start to tell me about their struggles, but stop short when they realize that their suffering is not as bad as mine. i try to be patient with that, because i know that it is a good thing for all of us to be sensitive to others. in reality though, that is not helpful... being vulnerable is helpful. exposing what is real to some people who can help you is wise and beneficial.
think of that parable from matthew 25... the master entrusted his servants with talents, "to one he gave five talents, to another two, to another one, to each according to his ability. then he went away without any further explanation (25:15)." one of the things that always sticks out to me in this story is how the first two servants seem to know what to do with their master's property, but the third guy has no idea. it is as if it is his first time dealing with this situation, and the other two have been on this rodeo before. but instead of speaking up and saying, "hey fellas, what am i suppose to do here?", he buries the talent in the ground like a total knucklehead.
when we are vulnerable, we offer each other the opportunity to encourage each other and provide wisdom from similar experiences. when my friends stop sharing what is real in their lives because they realize that my circumstances are 'worse than theirs,' it cheats them out of the opportunity of learning from someone who can possibly help them. it also cheats me out of being able to use the story that God is writing in my life for something positive, something that could really help build the Kingdom of God.
life is really hard. it is why divorce and addiction is so prevalent in our culture. i have been reading a lot recently how the divorce rate has gotten so high over the last several decades. which made me curious as to what that rate was for couples where one of the spouses struggle with chronic illness. i found a bunch of studies online that all agree that the divorce rate for couples in that circumstance is over 75%.
that is staggering. which made me realize that of the other 25% that are staying married, probably a good majority of them are struggling with some sort of addiction, just not 'bad enough' that the sick partner finally chooses to leave. drugs, alcohol, sex/pornography, spending, and even work can be an escape that goes beyond unhealthy, it can be extremely dangerous.
i wish i could tell you that i was perfect and that i haven't fell victim to any of this. i know that sex and pornography would be an easy escape for me, i have first hand experience with people close to me who have lost a lot because of it. i am extremely thankful for that experience in my life... it has made me very aware of that desire in myself and i do everything i can to avoid it at all costs. i have been successful at avoiding this, but i know that this is an easy thing that the enemy could use to steal, kill, and destroy. it scares me to death that i could be easily convinced that "i deserve it," and throw everything away.
work, however, used to be a major trap for me. because i couldn't control anything at home with alisha's health, i dove in real hard with my job... it was a place that i could have control, that i could will myself into victories. i suppose on the surface, that is a fairly good addiction to have, but it shut God out of a lot of my life. because i could win in my own strength, i didn't need God and so i effectively pushed Him away.
that's pretty sinful. i regret it. but the good news is that i don't have to regret it forever. Jesus is waiting and wanting to show all of us that there is hope to be experienced, especially in our suffering. it's how we live that virtuous life.
of course, i still feel guilty over filing for bankruptcy. i still feel scared about being able to provide the treatment that will help alisha. but if i bury those feelings of guilt and fear, i am afraid of what the outcome will be. i believe that will only separate me from being close with God. so, i can confess to Him (and you) what is happening in my soul and trust that He is going to guide me. He has done well in the past, and it seems like He has this unique attribute about being consistent.
so here i go... i'm writing to save my wife.
somehow i think it's going to save my life too.