Our Journey With Ali’s Debilitating Illness

Joel Merritt
Aug 25 · 11 min read

By now, all of you are aware to varying degrees that for the past five years the single most significant aspect of our lives has been our battle with Ali’s persistent health issues. While all of you are aware of the existence of her health issues and that they affect our lives, few are able to clearly articulate them. That is largely my fault. I have not spent nearly enough time communicating with or informing others when it comes to our circumstances. For me, there are many barriers to consistent communication; among them lack of time, lack of substantial change to report and no tangibly good news to share. Truthfully though, the greatest barrier to communication that I face is one that is self-imposed; communication of this sort makes me very uncomfortable. If I reverse the roles, and I find myself on the receiving end of mass communication from family or a friend with regard to a very serious and significant issue, there are many various feelings that I experience. Among them is a sense of duty and obligation to be interested, simply because the issue at hand is serious and the communication is from a loved one. Perhaps some of you can relate to the sense of duty and obligation that I’ve just described. I think a feeling of that sort in such instances is natural to most. I am also painfully aware of all of the times that I have received communication of this sort and breezed through or skimmed it, simply because my level of compassion toward the situation and the affected was insufficient in that moment. I regret deeply those instances. Communication is an act of vulnerability by the communicator, because the act of communication presupposes that others are interested. I could create believable superficial excuses endlessly to explain away my failures to communicate. In actuality, becoming personally vulnerable enough to suppose that others are interested in receiving communication and to risk invoking in others a sense of duty and obligation to be interested is a prospect that I find paralyzing.

A secondary self-imposed barrier to communication that I personally experience is related to striking an appropriate tone when communicating about seriously grave and negative subjects. We live in a world where we are each bombarded with suffocating negativity on a daily basis. For most, each day requires an intentional fight for positivity. Some wage that fight by plugging into sources of positivity, which come in a variety of forms. Others go to exceptional lengths to distance themselves from negativity, some even to the point of trying to eliminate “negative energy” from their lives. In light of this, many of us feel a sense of responsibility to insulate others from negativity, or at the very least we make efforts to keep from unnecessarily heaping negativity onto those around us. For those with faith in God, there is a further factor to consider here when endeavoring to strike the right tone. God is always at all times good and relentlessly pursuing ultimately good things, completely sovereign over all things, and yet life on earth is a mixed bag of positive and negative circumstances and experiences. In view of all of these things, the question of tone is, implicitly, how does one accurately and honestly communicate seriously grave and negative things without diving unnecessarily deep into the depths of negativity?

It is not uncommon to receive communication in some form where the communicator has chosen not to moderate their tone, and has instead endeavored to paint a picture of negativity that is darker than their actual circumstances, in hopes of dragging others into it. Communication in such a form is something that I believe we are all generally capable of, and many of us go to great lengths to moderate our tone in order that we might avoid communicating in that fashion.

It is my opinion that human nature is not generally inclined toward moderation, but instead toward polarity; and therefore efforts to avoid the aforementioned sort of communication often do not resolve themselves in moderation, but swing all the way to the opposite pole, which is to fabricate an overtly positive front. There is a societal expectation, which I believe is especially prevalent in the Christian community, that those who are suffering, in particular, those who are suffering from tremendous physical ailments, will choose to suffer in a manner which outwardly appears graceful and admirable. Please understand here, it is not my intention to suggest that suffering gracefully and admirably is flawed; it is admirable to suffer gracefully when it is the present and future grace of God that infuses and sustains the ability to suffer admirably. Nor am I suggesting that suffering gracefully and admirably is by necessity a fabrication of an overtly positive front. However, the inclination of human nature to skew toward polarity means that, in many cases, there is a great likelihood that when endeavoring to suffer gracefully and admirably, one will unintentionally fabricate an overtly positive front in their dealings with others.

It has been my observation that, when facing a major health crisis, a person and the persons around them often fall into the trap of working to maintain this front as they face the outside world. For those of you who have been very near to a person going through a health crisis or have experienced one yourselves, you will understand that in almost all cases the gravity of the situation is far more severe than others on the outside will ever realize. Part of this is because it is naturally very difficult to comprehend the gravity of a situation by which one is not directly affected. The other reason is because the construction of a positive front and the efforts made to incorporate overt positivity into all forms of communication often leave people on the outside with a distorted understanding of the situation.

My aim is to strive for moderation in this communication. Ali’s illness and her condition is presently very severe. That said, it is not my intention to reach for and manufacture additional gravity as I try to accurately communicate her present condition. Conversely, I do not want to wrap her condition in fabricated layers of positivity so thick that it will be impossible to grasp the severity of it. Though they are few, I will try to mention some of the positive developments in our ongoing battle with her health issues. However, I will be intentional about avoiding the overstatement of the positive. Believe me, the temptation to do so- the temptation to try and manufacture hope of my own accord is there. But I have no authority nor ability to independently create hope and neither will I over-inflate positivity if it would come at the expense of true transparency.

About a month ago, Ali had an opportunity through her doctor to take a diagnostic test through a lab in Virginia called Aperiomics. Aperiomics offers a test that is capable of testing for all known pathogens (bacteria, fungi, parasites and viruses), which number over 37,000 in total, in a single sample. This test has only been in existence for about a year. Previously, labs could generally only test for one pathogen per sample, making the identification of pathogenic infections as difficult as finding a needle in a haystack. Ali’s first diagnosis came in February of last year, when she tested positive for Lyme disease through a blood test. Lyme disease is transmitted through a tick bite and it is a bacterial infection with an organism called borrelia burgdorferi. Those infected with Lyme disease are often infected with other pathogens as well. She also tested positive for mycoplasma pneumoniae and methicillin-resistant staph aureus (otherwise known as MRSA), which are both bacterial pathogens. Since last February, she has received extremely aggressive antibiotic treatment, both orally and intravenously, and despite this her condition has worsened significantly over that time period. In my estimation, her condition has worsened more over the past year than over the previous four combined. The variety of her symptoms is extremely wide, and impossible to fit into categorical medical conditions. She has experienced extreme fatigue, low immune function, frequent illness and various neurologic, digestive, cardiovascular and pulmonary issues. Some of her more serious symptoms include hypokalemia (a sudden drop in potassium levels, which can be fatal), irregular heartbeat, sudden spikes in resting heart rate and episodes of chest pain with near inability to breathe.

The results of the test from Aperiomics revealed a few things: her Lyme disease and mycoplasma pneumoniae infections have been successfully treated and no longer appear to be active infections. She has no fungal, viral or parasitic infections; though she does have a number of other bacterial infections, including E. Coli, that have been linked to autoimmune disease and may be contributing to her condition. While the test provided us with valuable information, the question of what to do with that information is very challenging. It is good news that her treatments for Lyme disease and mycoplasma pneumoniae were successful. That said, a year ago we thought her problems may have been limited to those infections. The fact that her condition has worsened significantly over the same period of time that those infections were successfully treated leaves us with more questions than answers. Aside from her test through Aperiomics, she has been through extremely extensive testing over the past few years, which has included many blood panels, MRI’s, CT scans, ultrasounds, scoped procedures and two extended trips to the Mayo Clinic. We have compiled over 1,000 pages of medical records, but despite those efforts we are left with less direction than ever before.

We will continue to try things to achieve wellness for her, but at the present time there are no clear avenues before us; all are equally experimental and uncertain. As we proceed, one thing that I find especially difficult is what seems to be the crippling waves of hopelessness. The reality of raising two young children (this September, Sage turns 5 and Joy turns 2) is that life becomes increasingly difficult. Juggling that with Ali’s progressively worsening illness, where we have yet to experience any instances of sustained direction or hope, feels desperately impossible every day. We are thankful for the help that we have received at times, which has, even if for a short while, alleviated the impossibility of it all. Even so, I don’t mean in any way to downplay the efforts of others, but the nature of help is that it can only go so far. It is like a band-aid on a wound that won’t heal, or speed bumps in front of a vehicle zooming downhill with no brakes. Help cannot fix the problems, it can only temporarily alleviate the effects of them.

What perpetuates the feelings of hopelessness is that the convergence of these challenges becomes, at some point, unsustainable. Life cannot become more challenging at an ever-increasing rate, while Ali’s condition worsens without eventually reaching a breaking point. Where on the road ahead that breaking point lies, and how near to it we may come is impossible to ascertain. Truthfully, two years ago I thought that we must have already been at the edge of that breaking point; with Joy’s birth weeks away I could not imagine adding the strain of another child to our terribly fragile lives. Surely things would soon turn around, I assumed; for it would be impossible to take on more than we were already dealing with. Ali felt well for a short while after Joy’s birth, and I dared to feel optimistic. This optimism was short-lived, as it coincided with my mom’s cancer diagnosis. Seven months later, she was gone and Ali’s condition had worsened drastically. Not only were we facing the road ahead with the addition of a second child, but we were doing so without my mom’s faithful and consistent help and support.

The hole that we find ourselves in today is deeper than I ever thought possible, and yet by the grace of God we have been able to endure. To be frank, life often feels like a ride on a conveyor belt toward an incinerator, with no sign of rescue on the horizon. Will the convergence of the circumstances we face eventually reach that breaking point? The truth is, they might. We are all somewhat conditioned to believe that God promises that all of our most basic physical needs for survival on this earth will be met if we follow him, but we are not given that assurance. Many people around the world who follow God wholeheartedly eventually lose their lives for lack of food, water or shelter. God does not promise that he will always provide everything we need for survival, but he does assure us that he will always give us everything we need to walk the paths he has appointed for us, to whatever end they may lead.

The imagery and tone that I’ve used to describe the nature of walking down this path that we find ourselves on is perhaps uncomfortably dark. There was a time not so long ago that I would have felt it entirely inappropriate to share unfiltered thoughts and circumstances with others if there was a dark tinge to them. I would have felt compelled to refine them; to dress and package them nicely before presenting them to others. If you have ever endured a very severe trial (particularly health-related), one that necessitates the communication of that trial to others, then you will understand that there is a compulsion to figure out how to take the ugliness of that trial and repurpose it before presenting it to others. We feel an obligation to put our best face on and our best foot forth before sharing our troubles. However, if you have ever communicated in that way about such things then you will also understand that during such circumstances the depths of the valleys of despair are far deeper than the obligatorily repackaged and presentable versions that we communicate could ever convey.

There are times in life where the paths that we walk down are beautifully adorned with wonderful circumstances and tangible blessings. At other times, the paths can be indiscernibly dark and lined with pitfalls. If you are like me, you may be tempted to work to manufacture hope in times such as these in order to beautify the path before you. At times I have felt that I must try to create hope, for how else could I continue to proceed down the path before me? Time has taught me that, in difficult times, it is not always my duty to plant roses on dark paths in order that I might will myself to walk down them. Hope comes not from our ability to manufacture it ourselves, and the will to take the next step on a dark path cannot be sustained by a fabricated illusion that the next step will lead us closer to the mirage of hope that we have imagined. True hope comes not from this world, but from the God who promises to supply us with all of the faith that we need to take the next step down a dark and tumultuous path when there appears to be no hope in sight. My manufactured hopes have been smashed to pieces time and time again; at last I’ve surrendered them and given up on producing my own mirages of hope to will me down the path ahead. Strangely enough, I am finding in this dark place a sliver of hope of a different sort- a hope that does not promise a swift rescue, nor a hope that resembles those previous mirages, but a hope that simply enables me to take the next step down a dark path and find some small degree of contentment on it. That is, I am learning, sometimes all God calls us to do at certain junctures in life- to trust him just enough to keep pressing forward.

Lastly, many people have been asking how they can help. At this time, we are continuing to pursue treatments for Ali, but we have exhausted pretty much all of the more conventional treatment options. This leaves us with various experimental treatment possibilities, which generally are not covered by insurance. Because of her low immune function and the autoimmune components to her ailments, her doctor has offered that we could look into introducing exogenous healthy immune cells into her body by IV. This has demonstrated to be effective in many various illnesses, and treatments of this sort are slowly becoming more mainstream. However, the cost of the cells alone is about $60,000 and is not covered by insurance. We are pursuing treatments of this sort at this time, and are pumping much of our resources into funding them, but we can’t completely cover the cost of some of the potential treatments on our own. If any are inclined to help us fund her treatments, I have posted a link below. This way, any contributions made are done so anonymously.

https://paypal.me/pools/c/8hDUv34RGl

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