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When My Lyme Disease Made Me Leave the Home I Love

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When I first got diagnosed with late stage chronic Lyme disease, I began treatment shortly after. I figured that treatment meant six weeks of IV therapies and then oral medications that I would need to take to regain my health over a small period of time. Rather quickly, I realized this was no short-term fix.

I ended up leaving my job and going on state disability within six weeks and then eventually separating from my job altogether. A few weeks later, when things got to be very serious, a doctor in the emergency room requested that I “go home to be with family.” It was a gentle request saying there was not much more they could do for me. My doctor I was working with agreed that I was very late stage, and if I could get better from this disease, that it would take a very long time and cost a lot of money since most Lyme literate doctors are out of network. I had very little time to ground and think and had to act very fast while being too sick to even hold me head upright. I knew in my heart I had a very long road ahead of me.

I literally took a few things that I owned and shoved them into a suitcase. I was too ill to get onto an airplane so we drove straight across the country from California to Pennsylvania in four days. At the time I was in and out of conciseness and having seizures up to five times a day. The seizures would happen while I was sleeping and they would jolt me awake. It was literally a nightmare.

I had no option. I got to say no proper goodbyes. I left all my personal belongings behind and I did what I needed to do in order to get my life back. I was judged, questioned and told that I was crazy for what I was doing. Phrases like, “What does she expect from you, to just wait for her to get better,” were said to my partner. Good friends of ours stopped answering phone calls and very few people stood by us without judgement.

Illness is not like it is on television. No one goes out of their way to make things work for you on a financial level, on a personal level or on a physical level. I had this false belief that if I was sick or ever became chronically ill, my doctors, my family and my government, would help and support me. I could lean back and just heal while everyone else took care of it all. Of course, my doctors do help and my family does support me and go above and beyond, but I am the one who does the hard work, and my body is my 24/7 job to heal. It was a slap in the face for me when the reality sank in that this is all up to me and I have to do all of the hard work on my own.

I figured my stay on the East Coast would be a six month ordeal and in this time I could catch up with family and relax while I regained my health. Six months has turned into three and a half years. In that time period, I lost my car, my home, my partner left our home and put all of our items into storage and two years into treatment, he came out to help my parents take care of me. I never got to have any real closure with my life back in California. When we left the lease on the apartment, we used FaceTime to go through all of my items and I threw out most of it because we did not have time to go through it all item by item. At that point everything just turned into materialistic items that meant absolutely nothing if I did not have my health. We did what we needed to do in order for me to heal, and now that I am healing, I feel like none of this was an option and I am left with very little. I want to go home.

Where is home though? Home is not here with my parents in Pennsylvania and home is no longer San Francisco. My heart is in the Bay Area, but with a single income, my denial with disability and the reality that I will not be able to work for another two years, we cannot afford to go back to the city that I loved. That city is now one of the most expensive cities in the country and even people with two incomes cannot afford the rent. So where do I go next? Do I settle with what we can afford and move somewhere that I have to, just to be near doctors, or do I risk it and live paycheck to paycheck until I can go back to school and we can have two incomes? I do not know. The stress of it all is impressive. We have no clue where we are going or what to do.

But is that a bad thing? Here comes the issue with change that is so abundant with treating a chronic disease. Maybe this uprooting is directing me where I need to go. I look at it all like swimming in the ocean. When I was a child, I was out on a raft by the shore and a large wave came in and knocked me off very hard. I went under and did not know which way was up, which way was down or where I was. I woke up on the beach to a lifeguard carrying me and my raft was further down the beach. I had no idea what happened. This is so similar to my experience with treating my disease. I got knocked down and ended up somewhere I did not want to be and without an option. The thing is though, I woke up from the wave experience with knowledge, and I woke up stronger. Just like that, after this experience I am awakening with more experience and more knowledge, I just do not have a firm ground yet.

Stories like this used to scare me. I would stop reading about two sentences in and wonder what was wrong with the writer for writing something so uninspiring. What I did not realize at the time was if I read straight through, to the end, the writer was better and writing from the other side. I never made it that far because the first few sentences triggered fear. Fear made me avoid the work I needed to do and the things I needed to face to get to where I needed to be and even though it all looked like I was at rock bottom, I was right where I needed to be, I still am climbing my way out and building the foundation on more firm ground. What I have learned is to let go, let life guide me to where I may not want to be or where I think I may not need to be. The more I let go, the more I stop trying to control, the more I end up right where I should be. It is a scary lesson to learn, but once you do, the benefits are more than rewarding.

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Originally published: November 7, 2017
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Take Me Home