Four years after starting treatment I now find myself able to say truthfully, that, "I'm better"! I don't use the word remission yet, but I think I'm very close! I have been attempting to fulfill that promise to myself to return to being a part of the Lyme Community, but it's hard. I now understand why people pull away when they are healthy, giving hope to others is much harder then finding hope for yourself. I see the posts in the various groups, the same questions, the same sad stories, the same confusion and desperation. It feels redundant, giving the same information to people over and over again and having them over and over again hit the same road blocks. Even more difficult is pouring so much time and energy into someone and then have them give up the lyme journey and resort to whatever treatment or help their general practitioner can give them. That isn't a criticism, I get it! Still, it's frustrating that the lyme journey is so impossible to navigate, causing so many people to continue in their suffering. It's the suffering of others that makes returning to this world so difficult.
Still, here I am, writing this blog. I want to share hope.
Four years ago, I stopped working when I lost the use of my legs. My downhill spiral was swift and severe. At my worst my husband was having to feed me. Now, as my Facebook memories remind me of my hospitalizations, lack of answers, and desperate search for help, I'm ecstatic to be at my old job again! The one question I'm now getting is, "What did you do to get better?" Isn't that the question everyone with a chronic illness wants an answer to? I wish I could give a simple answer, do this and do that and then everything will be ok. Unfortunately, there is no simple answer to this disease. I'm sure that in future blogs, I will discuss the specifics of my treatment, but what I did to get well may not be what works for you. This disease is so unique to the individual. There are no cut and dry answers.
The one thing I can promise you is this: There is no HEALING without HOPE.
Let me tell you how I hung on to hope.
ACCEPTANCE
In darkness we see light, In reflection we find acceptance, In willingness we see hope ~unknown
In darkness we see light, In reflection we find acceptance, In willingness we see hope ~unknown
Acceptance is something I had to find again and again in different ways.
In the beginning I had to accept that I was sick and stop fighting with my body to function. I pushed myself to the point of being unable to use my body at all. I spent years refusing to acknowledge the seriousness of my health. For me, accepting that I was sick meant I had no other choice but to find answers. The search for answers had been so hard the times I did attempt to find them that I would always give up and just live with my symptoms. It took accepting that I was truly, seriously, sick, for me to have the determination I needed to find answers.
After accepting that I was sick, I quickly realized I had to accept help. Being sick my whole life had made me feel weak. I was constantly trying to prove I was strong and capable, and I did this by being self-sufficient. I didn't want to accept help from anyone, I was constantly trying to prove that I could do things myself. It was my way of hiding my perceived weakness; my illness was my deep dark secret. I couldn't hide all of my symptoms, but I hid as much as I could. Accepting help was shining a light into my darkest corners making me feel exposed and fragile. It wasn't until my husband reminded me that HE needed help that I was willing to let go of my stubbornness. I did it because of my love for him and the only means I had to help him was to accept the help of others.
As determined as I was to get well, I still had to accept where I was at. This was different then how I lived when ignoring my symptoms. Previously, I was in denial there was something wrong, causing me to not look for answers. Now, I was actively doing all I could to get better, but I also was purposeful in being at peace with my circumstances. I wasn't going to let this disease rob me of my joy. I searched out inspiration from the stories of others who had lived lives of purpose despite serious afflictions. I maintained hope in that no matter how disabled I was, my life could still have meaning.
FAITH
Charity can be the outward expression of faith and hope. ~ Wirthlin
There is no way I could have maintained hope without my faith. I don't know how people navigate difficult times without faith. I'm so thankful for having a relationship with my Savior since a very young age. My faith has grown over the years as Christ has brought me through difficult times and repeatedly demonstrated His love for me. I was very prepared for the challenges lyme disease would bring.
I believe the more faith you have, the more God will work in your life. I also understand that faith needs to be demonstrated through actions. It's like the trust fall, when you cross your arms and fall backwards trusting your partner will catch you. That is what faith is, taking a step, and trusting God to be there. From the beginning, the scariest part of this disease was finances. Not only were the costs of treatment astronomical, but my disability insurance was half of my regular pay. On top of all of this, it didn't take long for us to realize that I wasn't the only one in our family with lyme disease, both my husband and my daughters were also sick. We did not have the financial means to treat this disease, but we had faith. We knew that we needed to demonstrate that faith actively and did so in two ways. The first was to actively seek treatment and trust the money would be there to pay for it. The second was to commit to paying our tithe to our church every month, no matter what.
My faith teaches me that everything I have, including my very breath, belongs to God. It is fundamental to my faith that our finances are from God and we are merely His stewards. I demonstrate this belief by giving back 10% of my finances to the church. I haven't historically been consistent with this. It was something I did sometimes and then sometimes got out of the habit. Now, facing this financial crisis, my complete dependence on God was undeniable. I had a choice, and for me it was an easy one to make because God had demonstrated his faithfulness to me so many times already. I could have easily justified not tithing because of my great need for medical treatment, but if I did that I would be depending on ME and not depending on God. So, my husband and I made a promise to always tithe first, and I'm so glad we did because it allowed us to see God work in ways we would have never experienced otherwise. Someday I will have to write a blog outlining these miracles, there are so many. For now I just want to say that our financial situation has never been better in our almost twenty year marriage. It doesn't make logical sense, especially considering I lost my disability insurance two years ago. My husband's business is now, four years later, four times as profitable. It dumbfounds me.
SACRIFICE
If you don't sacrifice for what you want, what you want will be the sacrifice ~unknown
It isn't easy giving things up, in fact it's down right scary. I see so often people say that they can't afford treatment, but they also seem unwilling to give things up. I was also this person. Before I knew what was wrong, I often didn't follow the advice of others because their advice involved me spending money I didn't think I had. Maybe I was lucky to get as sick as I did because I had no choice but to seek help. It was scary realizing how fragile I was and how helpless I was to hang on to the life I had carved out for myself.
I had to give things up, BIG things, things I believed God had given me. Our biggest sacrifice was our house and one of our two businesses. We had been blessed with a large home that included space for our karate studio. It was my house I decided to give up first. We did this not knowing where we were going. After living in a rental for two years, circumstances allowed us to move into a house three times smaller then the one we left. Anyone looking at this from the outside would think this was a horrible sacrifice, but I've never been happier. Besides the fact that this house is so easy to take care of and is also significantly cheaper, it sits on a lake. Who can complain about that? If I had known ahead of time that this is where I'd end up, giving up our large house would have been easy. The second sacrifice was letting go of the licence we had for a large martial arts school. We spent years training, earning certifications and building a reputation in our community, to only let it all go. Once again, I am shocked at how happy I am! We created a small martial arts club that we don't run for profit, but as a community service. I have found a love for the martial arts that I didn't even realize I had lost.
My point? Giving things up is often the best way to hang on to hope. Loosing things is hard, but it doesn't mean there isn't something better waiting to replace those losses.
My Conclusion
I never thought I would tell someone that accepting their circumstances, demonstrating faith by giving up the very thing you feel you need the most and being willing to sacrifice the things that are most important to you is how to hang onto hope. On the surface it seems like those things aren't connected. It comes down to our attitude. I never said I would give you hope that your life would be exactly how you dream it should be. I just said I would give you hope. We all want so much from life, but I think what we all want most is to have a feeling of peace. My hope wasn't that I would be fully recovered, that was my GOAL, but that wasn't my hope. My hope was that I would be at peace in my circumstances, that I would have joy in the life I was living, and that I would feel a sense of purpose. Focusing on those things is what made this struggle so bearable and it is what is helping me not live in fear of having a relapse, because a relapse won't steal my hope. I don't know what the future holds, but I'm so thankful for the lessons I continue to learn.
I believe the more faith you have, the more God will work in your life. I also understand that faith needs to be demonstrated through actions. It's like the trust fall, when you cross your arms and fall backwards trusting your partner will catch you. That is what faith is, taking a step, and trusting God to be there. From the beginning, the scariest part of this disease was finances. Not only were the costs of treatment astronomical, but my disability insurance was half of my regular pay. On top of all of this, it didn't take long for us to realize that I wasn't the only one in our family with lyme disease, both my husband and my daughters were also sick. We did not have the financial means to treat this disease, but we had faith. We knew that we needed to demonstrate that faith actively and did so in two ways. The first was to actively seek treatment and trust the money would be there to pay for it. The second was to commit to paying our tithe to our church every month, no matter what.
My faith teaches me that everything I have, including my very breath, belongs to God. It is fundamental to my faith that our finances are from God and we are merely His stewards. I demonstrate this belief by giving back 10% of my finances to the church. I haven't historically been consistent with this. It was something I did sometimes and then sometimes got out of the habit. Now, facing this financial crisis, my complete dependence on God was undeniable. I had a choice, and for me it was an easy one to make because God had demonstrated his faithfulness to me so many times already. I could have easily justified not tithing because of my great need for medical treatment, but if I did that I would be depending on ME and not depending on God. So, my husband and I made a promise to always tithe first, and I'm so glad we did because it allowed us to see God work in ways we would have never experienced otherwise. Someday I will have to write a blog outlining these miracles, there are so many. For now I just want to say that our financial situation has never been better in our almost twenty year marriage. It doesn't make logical sense, especially considering I lost my disability insurance two years ago. My husband's business is now, four years later, four times as profitable. It dumbfounds me.
SACRIFICE
If you don't sacrifice for what you want, what you want will be the sacrifice ~unknown
It isn't easy giving things up, in fact it's down right scary. I see so often people say that they can't afford treatment, but they also seem unwilling to give things up. I was also this person. Before I knew what was wrong, I often didn't follow the advice of others because their advice involved me spending money I didn't think I had. Maybe I was lucky to get as sick as I did because I had no choice but to seek help. It was scary realizing how fragile I was and how helpless I was to hang on to the life I had carved out for myself.
I had to give things up, BIG things, things I believed God had given me. Our biggest sacrifice was our house and one of our two businesses. We had been blessed with a large home that included space for our karate studio. It was my house I decided to give up first. We did this not knowing where we were going. After living in a rental for two years, circumstances allowed us to move into a house three times smaller then the one we left. Anyone looking at this from the outside would think this was a horrible sacrifice, but I've never been happier. Besides the fact that this house is so easy to take care of and is also significantly cheaper, it sits on a lake. Who can complain about that? If I had known ahead of time that this is where I'd end up, giving up our large house would have been easy. The second sacrifice was letting go of the licence we had for a large martial arts school. We spent years training, earning certifications and building a reputation in our community, to only let it all go. Once again, I am shocked at how happy I am! We created a small martial arts club that we don't run for profit, but as a community service. I have found a love for the martial arts that I didn't even realize I had lost.
My point? Giving things up is often the best way to hang on to hope. Loosing things is hard, but it doesn't mean there isn't something better waiting to replace those losses.
My Conclusion
I never thought I would tell someone that accepting their circumstances, demonstrating faith by giving up the very thing you feel you need the most and being willing to sacrifice the things that are most important to you is how to hang onto hope. On the surface it seems like those things aren't connected. It comes down to our attitude. I never said I would give you hope that your life would be exactly how you dream it should be. I just said I would give you hope. We all want so much from life, but I think what we all want most is to have a feeling of peace. My hope wasn't that I would be fully recovered, that was my GOAL, but that wasn't my hope. My hope was that I would be at peace in my circumstances, that I would have joy in the life I was living, and that I would feel a sense of purpose. Focusing on those things is what made this struggle so bearable and it is what is helping me not live in fear of having a relapse, because a relapse won't steal my hope. I don't know what the future holds, but I'm so thankful for the lessons I continue to learn.
