Gratitude

In the spirit of this most recent holiday, it felt appropriate to write on a topic I have thought a lot about over the years. I know that I have attempted to detail many of the challenges that come along with living with a debilitating chronic illness. Those challenges are very real and cumbersome, and I appreciate those who have been willing to read my writing. But I wanted to take a chance to talk about the many ways in which I have been extremely blessed.

I have mentioned in the past feeling robbed by my illness. There are a lot of things that I cannot do, and there are a lot of negative emotions that can crop up as a result. I feel anger over what has been stolen from my life. I feel sadness over the life experiences I most likely will never have. I feel guilt over being a burden on my loved ones. I feel physical pain on a daily basis and sheer emotional exhaustion over never having a moment of normalcy. I feel confusion over why this happened to me. I feel frustration over my body not doing what I want or need it to do. It is enough to really crush my spirit and prevent me from feeling joy of any kind. But the emotion that squashes most if not all of these negative feelings is gratitude. When I stop to think of the myriad of ways my life is wonderful, it helps me cope with the reality of my disease.

I want to preface all of this by saying that I do not currently suffer from a mental illness. This is something that I am incredibly grateful for. Many many people with my disease (and many more without it) have depression and anxiety. “Thinking positively” is not a cure for depression and anxiety. I struggled with depression as a teenager because of some powerful pain medication I had to take for a back injury. Those feelings of despair are indescribable. It took therapy and getting off of those meds before I felt like myself again. Please please please, if you feel like you have something more significant than feeling sad, go see a doctor. Heck, even if you aren’t sure if the sadness you feel is “normal”, go see a doctor. There is help out there, and you are worth seeking it out. I just wanted to clearly state that before talking about my current experiences.

Gratitude has been the antidote to sadness for me. I would be remiss if I did not take a chance to write about it, even if it is just for me to come back to and read when I am feeling down. The first thing that comes to mind when I think of blessings is my husband Brandt. I know that I have mentioned him in my writing many times, so you probably already know what an amazing man he is. I sincerely lucked out in the marriage department. Not many people are equipped to handle something like being a caregiver to someone with ME. Brandt has not once, I repeat NOT ONCE made me feel guilty for having to pick up the slack in our home. And this isn’t like “I have the flu and will be back on my feet next week” kind of slack. This is “are you prepared for a lifetime of doing more than your fair share of cleaning, shopping, working, basically everything” kind of slack. We have spoken many times about it, and those things simply don’t bother him. What is most challenging for him as it comes to dealing with my disease is watching me struggle and knowing there isn’t anything he can do to take it away. The other thing that frustrated him to no end was when I was in the active denial phase of my illness and kept pushing and pushing and pretending like nothing was wrong while severely hurting myself. It didn’t matter to him that the grocery shopping was done and the house clean when I had used every drop of my energy and then some to accomplish it. It took years for me to realize that he would rather me rest and feel better than I would if I depleted my strength.

Beyond his caregiving, I am grateful for the kind of relationship I have with Brandt. He is my best friend, and I love being with him. He makes me laugh like no other and is incredibly thoughtful and selfless. We love spending time together, which has been a huge blessing given the situation with COVID. We can talk for hours about almost anything. He challenges me to be a better person but is also encouraging when I get frustrated with myself and my brain. Our life together is wonderful, and I am forever grateful that I picked up the phone and told him I had a crush on him.

I am also grateful for Brandt’s work ethic. He is an incredibly smart and capable man and has worked and continues to work very hard to provide for us. I don’t need to worry about health insurance (oh man that’s another topic for another time) or the cost of treatments. I have had access to the best doctors in the field while those in other countries (and some in mine) are horribly treated. I do not have to work, as is unfortunately the case for many people who are ill. All of my focus can be on doing the best thing possible for my health, and I am well aware that this is not the situation for an abundance of people. I am a member of a few online support groups, and my heart breaks for the members of this group who do not have supportive partners. One woman posted that her husband said he would rather leave her at home rather than push her in a wheelchair. There are also people whose partner’s have left them, not being able to cope with the burden of caring for the chronically ill. They are left in dire financial situations trying to get enough resources scraped together to survive. I feel incredibly sad that people with my same condition are left in such circumstances.  

I also have the blessings of amazing friends. There is a pretty prominent member in our patient community who posts somewhat regularly on social media named Whitney. He has severe ME and is cared for by his parents. His father is one of the preeminent researchers in the field, a geneticist at Stanford. Whitney recently posted about the friendships he has lost as a result of his illness. In his specific story, he spoke about a former friend’s disbelief over the severity of his ME as well as this friend’s constant criticism of how Whitney “chose” not to participate in much, implying that his symptoms were exacerbated by his unwillingness to be out and about, rather than his very real physical symptoms limiting his life. There were hundreds of comments under this post from people with similar stories about friends who had been cruel to them. Many people said they had no friends at all because of a lack of understanding and belief. I will not say that I have never experienced someone I know saying something stupid to me or just not taking much interest or care in what I am dealing with. But I also have some rock-solid friends who have loved and supported me through all of this. They have never questioned my illness. They have never criticized my choices or tried to ever so subtly tell me I am being dramatic. They take time to learn about my disease and ask lots of questions. They will modify activities so that I can join and check in with how I am feeling. They never get upset if I last second cancel. I know finding good and true friends is a feat for anyone, healthy or not, but I am especially grateful that my illness hasn’t strained my friendships. It just showed me who really cared.

I also want to express my appreciation for my family. I seriously have the best family ever. My parents are always there in any capacity that I need. Now that I live in North Carolina, I get to see them so much more often. My mom lugs my wheelchair in and out of the car and pushes me without any complaint. She has taken me to appointments and is always ready and willing to help however she can. My parents put a comfort cot in their kitchen this past week so that I could hang out while Thanksgiving dinner was prepared. It was so much more fun to be in the middle of things rather than resting by myself. (Even though I was actually kind of in the middle of things and very much in the way…but that didn’t matter to anyone!) I was made to feel wanted. People providing accommodations so that they can be with you makes you feel like a million bucks. It says that not only do they want you around, they are willing to be inconvenienced to make it happen.

My dad is on the constant hunt for positive news. He will probably know about any treatment breakthroughs before one of my doctors gets a chance to tell me. He is also willing to help me however he can and lets me know he is there no matter what. My siblings are all wonderful and the same goes for their spouses. They are there with accommodations. There when I need to vent. There to validate and uplift me. Again, I am so grateful that my illness hasn’t damaged any of these important relationships. If anything, they have shown me how much they care about me. They have shown me how much I truly lucked out in so many places in my life.

I am grateful that my disease is not so severe that I can’t listen to music. That I can still watch a sports game and cook for my husband. I am grateful that my lifestyle means I can hopefully delay the progression of my illness for as long as possible. I am grateful for the medications that help manage some of my symptoms and the therapies that help my pain.

 I lastly want to express gratitude for how my illness has changed me. I would not have considered myself a very empathetic person before I got sick. Having ME has changed that. Living with ME has increased my spirituality, as I have been forced to lean on my Savior Jesus Christ more fully. I am more patient with myself and others. I have been forced to slow down and take stock of what really matters. I have had the chance to work on myself and practice having a perpetual attitude of gratitude. And that doesn’t mean I am chipper and happy every second of the day. That there aren’t times I am mad, upset, sad or whatever other negative emotion one can experience. But recognizing the good things in my life has been the direct result of having something bad happen.