I have Lyme. I’d like to not have it anymore. I also just want cake.
Look at us. So happy. So healthy. So thinking we are funny. Today I want to write about this past year… but only to brag about this guy up to the right of me. D, this is your tribute.
The above photo was taken on New Year’s Eve, December 2012. We had decided to spend it in New York City and, because none of us know the future, we had no idea it would be our last fun New Year’s celebration. When we met we had this lofty notion to spend New Year’s Eve in different places around the world. We had a good start going. There was crazy Vegas, there was a more refined celebration in Park City, UT, and then there was insane NYC and Time’s Square. A few months later we got married. Then, a few months after that, Lyme Disease ruined everything. Like it always does. Stupid Lyme.
Despite being ill (just under the surface, I guess) with this illness for a long time, I was very high functioning and never assumed I had a disease. Then one night in June of 2013, it simply exploded overnight and our lives completely changed. The first three weeks I experienced what I can only describe as the hell of a true panic attack… that raged the entire three weeks with no moment of peace or respite. I have told my family since that time that if I ever have to go through that again I would rather die. I spoke as matter-of-fact as I could. D stayed up late on his work nights and would rub my back and arms as I would hunch over pillows and rock back and forth. He rushed home from work several times when I would call in a panic over chest pain or severe arrhythmia. He never complained and never suggested that maybe it was just anxiety as the doctors I would see would say.
Those of you with Lyme Disease, the ugly kind, the chronic-I-was-never-diagnosed-for-years-and-years kind, the kind that has nested in every important part of your nervous system kind, then you already know the controversies. You know what it is like to hear “you’re fine” from a billion doctors, to be told it’s “just anxiety”, and to “take this Lexapro”, (no, I will not). You know what it is like to be silenced. Brushed off. Discarded by the very people who are supposed to help you. You understand crying in doctor’s offices when it seems once again, your hopes for a diagnosis and cure are dashed. My sweet better half never questioned me for a second. If I said I was sick, he agreed I was sick. Thank you D.
After a few weeks of hellish and traumatic sudden illness, of staying in every night, of developing major cabin fever sitting on the couch with me all evening during a perfectly good summer and watching tv, D began to express boredom. Naturally. So he encouraged us to get out in the summer air and at least take the dog for walks. I would shuffle my feet, drag my feet, sway as I walked, cry as I walked. Just two weeks prior I had mountain-biked up the steep hill we now live on, and now I could barely walk. I think that is the last time I heard him complain about the loss of our active lifestyle (or anything) for the next year and a half. Did he stress? Certainly. But downright complaining, no. Never again.
He has watched me lose all that was “my life”, and has chosen to lose his with me. He has stood by my side and never once (at least out loud) bought in to all the controversy of “chronic Lyme” being a fallacy. Instead he drove me across the Rocky Mountains to a Specialist that was finally able to confirm I had Lyme Disease. When he began to witness the severe turn for the worse I experienced on this doctor’s treatment protocol, he turned to the internet for me and found ways I could detox and bought me supplements to try to help me feel better. On a night when I was struggling to breathe, he once again rushed me into the ER, carrying me in his arms as I gasped for air and descended into such severe tremor and muscle rigidity the nurses couldn’t even draw blood from my veins. D stood with me and fed me ice chips once I was stabilized. He thinks his efforts at comforting me are sub-par, but I disagree.
Since becoming sick, and especially since starting aggressive IV antibiotic therapy with a new (and much more expensive) specialist, he has suffered his own private hell. A few weeks ago I asked him as we were driving home from Home Depot (must have been a good day for me) I asked him how he felt this year had gone now that it is coming to a close. He thought quietly for a bit before saying that it has been the hardest year of his life. But I’ll be darned, I wouldn’t have been able to tell. He has stood by me so firmly, has sacrificed so consistently without complaint, has done dishes and laundry and cleaning and dinner-making as if it was our agreed arrangement from the beginning. He has gone to work every day and worked long hours, just to give all the money he makes to my doctor and my treatment. He has not been able to spend his own money on anything for himself in over a year. Does he talk about that? No, he doesn’t. He had waited for years to marry me only to lose me to this illness 3 months post-wedding day. I am here. But he gets very little “wife” from me right now. He still doesn’t complain. I have tried many times to get him to confess to any buyer’s remorse… hah hah… but he acknowledges none.
I feel like I have gotten too much of the spotlight this past year. The hell that I have been experiencing, has not been optional for me. Perhaps because my suffering is very visible and loud and extreme and noticeable. Perhaps sympathy is easier to give to those who have difficulties put upon them. But what about those who willingly choose those difficulties? The man I married… his trials, his loneliness, his sacrifices… he is choosing to make them all. For me. For us. Nobody sends him messages telling him to hang in there. Nobody posts on his Facebook wall how inspiring they find him. Every sacrifice he makes is done in the privacy of our own home and they are huge, giant, supreme sacrifices that few will ever see. He does this all on his own, with no reward. He gets nothing. He’s just been giving. Every night he comes home from work and after dishes or laundry or whatever is done, he comes and sits next to me, with me, until it is time for bed. He has truly embodied our marital vows of becoming one… no matter what that will require of him. He has followed me into the deep, dark, depths of this disease where loneliness and suffering rage without an end date. When I say few will ever understand the suffering of Neuro Lyme; only those who have it get it… I also think few will ever understand the suffering that our loved ones assume as they forsake their own lives and walk down that dark tunnel with us. I don’t understand what it’s like to be on his side and he doesn’t understand what it is like to be on my side, but he has made it easy for us to stick together anyways… as if this trial was a unilateral experience for the both of us.
This person that I married, this wonderful person, is the unsung hero. I don’t know how this past year has made him feel about me… (his wife is literally a 24/7 hot mess), but this past year has left me in awe of him. It has solidified my love for him and made me want to be more like him. So on this day of New Year’s Eve, a day we won’t be celebrating much, a day I will be infusing meds and either embarrassing myself or konking out by 8pm from high doses of Marinol, I wanted to write something to dedicate to him. The man who (eventually) will again be able to take me to new places in the world to resume our New Year’s Eve traditions. Thank you D, you’ve kept me going this year; this year of great eternal significance for the both of us. I believe we will be blessed beyond measure as we near the end of this trial. Thank you for teaching me so much about quiet sacrifice. Your spirit is mighty.
Sorry I posted a goofy picture of you. I’m not taking it down.