For those who really know me, you know that of all the 4 letter words I’ve used with my Lyme disease, hope has not been a regular one. At least not until I can sit back and reflect on my situation.
This past week has been brutal for me on many levels. In order to really show what Lyme disease is like, I’ve decided to be as honest as possible about my journey. This is one week where I actually don’t feel comfortable in being as open and honest as I usually am (about everything in my life). So I’m going to take it from a different angle.
I’ve spent a lot of time this week talking to, listening to, and helping others suffering from this disease who find themselves in a strange world dealing with family. I will again go on record as saying I have an amazing family. Never once have they doubted the validity of my illness. Never once have they complained about my fits of Lyme rage, my depression (hey, no matter how optimistic you are, this disease will drag you to hell and back, depression is going to be part of the disease), the cost of treatment or how much I’ve disrupted everyone’s lives in trying to get my own life back. So there are times I feel hypocritical trying to help others who go through these problems with their family members.
But while so many people were coming to me this week in desperation over their parents, or their children, I too was embarking on a week of my own problems that my mother and I had to deal with. (And in the process other family members get dragged into it.) This is one of those things I’m not ready to be an open book about, but I want to point out that while I continuously praise my familial support system for all they provide to me, it doesn’t make it a perfect situation.
I am 37 years old. I moved out of my mom’s home at the age of 18. Other than a few months here or there during summer vacation from school, I’ve been on my own since then. My mother is a single woman (and Italian, which adds spice to more than just our meals, we have spicy personalities too). Other than me, she has primarily lived alone most of her adult life. I am a chip off the old block. From looks, to mannerisms to our love of the movie Mamma Mia, I am a version of my mother. Sure, there are parts of my father in me, but as he was not man enough to be a father, everything I am comes from my mother (except my exceptionally large lower lip, that I thank Dad for).
So we are two stubborn, independent yet easy going people. With every year I age I find myself turning more and more into my mother. I think we all reach a point in our lives where we realize we have become our parents. Personally I think it’s an honor to take after such a remarkable woman.
But the situation Lyme disease puts us in is an ugly situation. All the way around. I don’t mean for her and me, but for the thousands and thousands of other people fighting this fight. This week as we were having our own issues, I really thought about those who don’t have the support system I have to begin with, and I realize how difficult the situation must really be for some people.
It seemed that as my own issues were taking place this week, I began to be inundated with people from the Lyme community asking advice on how to deal with their families and their illness. That’s when it really began to dawn on me once again, how lucky I am for the friends and family I have. But beyond that, the fact that I really don’t know what to say or do to help these people who find themselves in these situations.
While my family refers to me as a “Lyme celebrity” and is constantly praising me for all the hard work I’ve put into Lyme awareness, this website, and my work with the Lymenaide team, there’s another whose family complains about all the time they put into Lyme awareness, Lyme projects and the cost that goes along with it. (For those who don’t know, the 4 of us heading up the Lymenaide team are all doing this out of our own pockets. 3 of us are too disabled by Lyme to work, the 4th has a family to support, and is also using her own resources and time to further the cause. This isn’t a hobby for any of us, something we do after we get home from work (with a paycheck), but something so important to us that we pay to do the things we do just to further the cause and help save people from the devastating effects of this disease.)
So many adult children are suddenly at the mercy of their parents again, years and years after “leaving the nest”. Many of us have boxed up our lives, our items of comfort and security, and placed them in storage while we return to the nest. Most of us have no income and are unable to work because of how sick we are, so we depend on our parents for the simplest things, from dental floss to life saving medication. No matter how strong your support system, it is brutally difficult for an adult to deal with the loss of independence they once knew.
That all goes without saying, being the situation many of us have ended up in due to this insidious disease. But then there’s the other side. The part of the situation that really does go without saying, the support system.
I want you to think of the parent, working towards their retirement, already retired, or still raising your little brothers and sisters. The child that went off on their own at some point in the past becomes sick. That alone is a heartwrenching experience for a parent. I can only share my point of view as an owner of two cats, I can’t understand what that feels like for a parent, but I can be sure it’s awful.
Suddenly it goes from being sick, to being thrown into a disease that is truly a nightmare. From the medical side, to the political side, to the people who say what they have isn’t real. It’s a struggle to get diagnosed, and an even bigger struggle to get treatment. Think of how helpless you felt as the one who was sick, then realize that feeling of helplessness has to be ten fold for your parents.
Suddenly, a disease they probably never knew could kill someone, has completely disabled their child. The child they raised into adulthood, healthy and able to live a full life. Maybe this child is now married with kids of their own, maybe they are fresh out of college, or maybe they are single, 37, living in Albany and working for the state with 2 cats (that was me, BTW).
So disabled now they can’t work, they can’t have an income. Disability is next to impossible with Lyme, and it’s a long and tedious effort. Suddenly their bank accounts get drained, their credit card bills pile up and a time comes when they are forced to give up their home. Perhaps because of financial reasons, or maybe they can no longer take care of themselves.
What must it do the parent of that child to see everything they built, and all their hard work of getting them safely into adulthood come unravelled all because of the bite of a tick. I can’t fathom what that is like, but I can only imagine that for a parent it’s like having your life suck back in on you. (That is the only way to describe with words what I think it must feel like.)
And that’s just the beginning of when things get bad. I know for my story, I spent 9 months living alone, sick and unable to leave bed many days, but I was still “on my own”. (Okay, so Mom delivered groceries and meals at least once a week, but I was still living independently.) Then as I began the worst part of my treatment, I was suddenly in the same house with her day after day. Those first 9 months she didn’t hear me dry heaving every day as I dealt with the spins and sickness the antibiotics caused me. The first time she experienced that first hand, she later told my Aunt, was the moment so much of her hair turned gray.
Until a parent witnesses first hand what happens, they can’t begin to understand the gravity of this disease. And when they are finally confronted with the day to day happenings of the disease it must be very disconcerting for them.
Add to the mix the fact that the parent (or parents, as a child of a single parent I automatically refer to the singular, but I know that there are many duos out there experiencing this together with their child) now suddenly has to support their adult child, and it makes things even more confusing. Most of us cannot get our health insurance to cover our treatments and Dr. visits. No parent is going to let their child suffer if they can provide the treatment needed. While I will be writing articles about the guilt that causes to a child for probably the rest of my life, I will also try to understand what that does to a parent. Most parents would give their last cent if it meant healing their child, but it also comes at a cost for them. They spend their entire lives trying to teach you to be responsible and be able to take care of yourself, and suddenly they have to go against all of that to support their child and bring them back to health.
Every day I hear stories of families who lost their homes paying for treatment. Familes that have 3 or 4 members all infected with this disease, all needing treatment. The one thing that is clear is that there is no point that is “too far” for the family. They will use every avenue available to provide the care that is needed.
Then beyond all those specifics is that mere fact that our parents want what is best for us. They want us to lead happy, successful and full lives. This disease robs us of happiness, success and a full life. All that they hoped and dreamed for us shatters, sometimes overnight, when this disease grabs hold of us.
We are all so wrapped up in what we are losing, what is being taken from us, what the disease has done to us. We can spend our entire illness at one big pity party. We all need to deal with the feelings and issues, but we also have to move on. But sometimes the expression “can’t see the forest through the trees” sums up how we face our own illnesses. The forest is Lyme disease, the trees are our families (and caregivers). We are so consumed with the disease itself we don’t realize how everything we go through happens to our parents too.
I’ve used 6 different personal stories I’ve been involved in this week, including my own, to put together the thoughts in this post. Please know they are not directed to any one individual or family, but my thoughts on the experiences I’ve heard about and been involved in this week with so many who are so trusting to come to me with their situations.
So for those who don’t have Lyme, and don’t have a family member with Lyme, take this moment to think of those who are pulling those of us infected with this disease through our illness. Turn off your feelings of pity, sadness or despair for the sick ones, and turn on your feeling of gratitude, support and hope for those who are doing everything to keep us alive.
For those who suffer from Lyme disease: as hard as it is, take a few moments and step out of the pain your body burdens you with, forget the financial problems, the loss of relationships, the loss of the things you love so much, and think about how all those things affect the ones that are picking up the slack in what we can’t do for ourselves.
If you are one of us adult children who have to depend on your parents years after leaving home, thank God that you have a family to do that. Don’t let the guilt consume you for being loved unconditionally. Remember those who have no one, and the fight they have before them without their parents there to help them.
I know not all of us who are sick have to return to live with our parents. But many of us do. The things in this article may not apply to everyone, but I hope the principles will touch everyone to help them see both sides of this disease, those who suffer from the infection, and those who suffer because of the infection.
On this 4th of July as we celebrate a day of independence, when so many of us can’t celebrate our own independence from this disease, please take the time to celebrate those who are there to pick up the slack for us. Please remember the parents who fight tirelessly, years after they thought their “job” was done, from cleaning up vomit to learning how to properly clean a PICC line dressing. Don’t just feel sorry for those of who are sick, but feel sympathy for what our sickness does to our loved ones.
Thank you to all those parents out there who would go to hell and back again (and many are) just to help their children get their lives back. They are the true heroes in this fight.