I have thoughts. I want to write them. Thoughts about love and alarms and the coming of Christ and Disney Princesses and alpaca babies and sunshine and butterflies and coloring book, but there has been a temporary setback in my ability to write these thoughts out. So in the interim, I leave you with this. It's part of a note posted by a dear friend of mine (used by permission). Due to a potentially chronic disease her life has been altered by diet changes and medications. While her experience is different than mine, many of the things we feel, especially when it comes to social situations, are similar. She did such a wonderful job capturing her thoughts and feelings, and unintentionally capturing mine, I decided to share. I resonate most with what she writes about being socially isolated and people trying to make decisions for her. The awkwardness of having to turn down a dinner invitation or explain special food needs or bring your own food to a function or back out of plans at the last minute because you are too exhausted or slip out to take your meds discretely is almost always less painful than not being invited in the first place. I have limits too, but I am a grown-up and can make my own decisions about when I need to slow down. And, like my friend, I have a giant granny pill pox too. (It's almost identical to hers).
Without further rambling from me, here is the final portion of her note. The only change I have made it to abbreviate the name of her condition to help protect privacy (and because it's really not that important):
It’s been hard dealing with the drugs and a special diet and everything else, but when I look back to where I was and how far I have come, I am glad I’ve been able to do these things and had people to help me along the way. Yes, I carry a giant granny pill box with me everywhere and sometimes feel like my life is dictated by my med alarms. No, I can't usually eat what other people are eating. But if these things will help me to get my life back, they really are small sacrifices.
But it still has been hard to face my limitations. It’s been hard to be different. It’s been hard to not do everything I once did and everything I still think I should be able to do. It’s been hard to accept help from other people. It’s been a journey, and I know the journey is not over yet. But it hasn’t been a journey I’ve had to travel on my own. Yes, I have often tried to push people out of my life. I guess it’s like I get to a point where I’m tired of depending on other people and being a burden, so I decide I’m going to live life on my own. So I try and push everyone away. But this never works. God didn’t create us to live life on our own. He created us for community. I understand this in my rational moments, but unfortunately, all-too-often I have been less-than-rational. This journey with LD often feels like one giant roller coaster. (Honestly, it feels like I’m PMSing 24-7.) Some days I can handle the ups-and-downs and take it as a part of life. Other times I just get angry….angry at life, angry at the disease, angry that I can’t do what I want to do, angry at God, and even angry at you, if you happen to be in the wrong place at the wrong time. I’ve never really been an angry person, and I have a hard time knowing how to deal with this anger. In retrospect I can usually see what a jerk I was, but at the time, I’m just angry, and say and do things I shouldn’t and hurt people who I love. (This is not a justification or an excuse because I am still responsible for my own behavior, but when I saw, “moody, irritable, and cry easily” on a list of LD symptoms, at least it made a little more sense where it could be coming from.)
I often feel isolated and lonely in this world of disease. It’s a world I don’t understand and I’m living in it so I really can’t expect others to be able to understand it. But I feel like people are always wanting to protect me. It’s like because I’m sick, I’m now “fragile.” They’re trying to keep my health and well-being in mind. They’re trying to help with my healing. So they end up doing things for me in an attempt to save me energy and bless me. In some ways I am grateful, as the tasks they do are often things I probably couldn’t do on my own. But in the process, so often I feel like I’m useless, like I’ve been put up on a shelf with the ceramic figurines, left to gather dust, but beyond that, I’m really not good for anything and will soon be forgotten. Other times they don’t ask me to help out or be involved in things because they don’t want to overwhelm me. They’re trying to protect me, and give me a chance to heal. Like that ceramic figurine placed carefully on the top shelf out of reach, they think it’s a whole lot better to leave me alone than to actually touch me and risk breaking me. But even if I have limits, I can still make my own choices. I can be given opportunities and allowed to choose if I take them or not.
In this world of disease, I also often end up feeling very socially isolated. Not only am I no longer a useful member of society, so often I feel like I am not invited somewhere because they know I can’t eat the food, or I will probably be sleeping, etc. They don’t want me to feel left out or put me in an awkward situation (such as sitting at a restaurant and trying to explain to the waitress that really, they can’t make food that I can eat so I’m just going to sit here), so I’m just not invited. But in reality, this just leaves me feeling more lonely and forgotten. Or I’m with a group of people, and they totally talk “around” me, not even acknowledging my presence. In these situations I’m left wondering if I’m not wanted, or they’re assuming I don’t want to be included, or they don’t know how to include me so it’s easier to ignore me, or what. It’s hard. Our society is very focused around food, and you become VERY aware of this when food is taken from you. And let me tell you, it’s already a whole lot of fun to be eating a spinach salad while everyone else is enjoying yummy goodies, and it just makes it better when people tell you over and over again, “Yuck! That looks gross! I’m sure glad I’m not eating
that!” For the most part, I’ve come to terms with my special diet, but people telling me my food is gross really doesn’t help this situation. You may not enjoy it, but guess what? You don't have to eat it, so please keep your comments to yourself.
And speaking of food, yes, I am losing weight, and yes, I am aware that I don’t have weight to lose and that my bones are protruding in places they shouldn’t be. Yes, I know most my clothes don’t fit me anymore and I look like a bag of bones. Trust me. I know these things—without you telling me. You don’t need to point them out to me, really. I know them, and everyone else has already taken it upon themselves to remind me of it as well. I don’t need you joining in, too. I have become very self-conscious of my body, and you telling me I need to gain some weight doesn’t help. You try cutting all sugar and gluten out of your diet and not losing weight while you’re healthy, and now add the absorption issues that come with LD to that, and yes, you, too, would be losing weight. Without your help, I am reminded of this every time I walk by a mirror. Without your help, I am reminded of this every time I put on a pair of jeans and have to tighten my belt to hold them up. Without your help, I am reminded of this every time I put on a shirt and feel like I’m swimming inside of it. Without your help, I am reminded of this every time I put on a dress that I’m supposed to wear for one of the weddings I’m in this summer and wonder how I will be able to hide my ugly, gangly body so that I don’t mess of the perfect pictures of the weddings I’m in. Giving me recipes for high calorie, good-tasting foods that I can actually eat would be a whole lot more effective method of dealing with my weight loss than telling me my clothes don’t fit and I’m going to blow away if I don’t put more meat on my bones.
Most days I’ve come to terms with where I’m at. I realize I am quite blessed to have family, friends, and doctors who have helped me figure this thing out and get on top of it before it became a bigger monster. And although I can’t say this journey has been the most fun thing in life, I have also learned a lot through it. I know God has me here for a reason, and He isn’t abandoning me here. But there are still plenty of days that are just stinking hard. And something seemingly small can very easily set me off. Just last night some friends were going out stargazing. I LOVE stargazing, but I knew I needed to go to bed. Instead of being able to handle the situation like a mature adult, knowing there would be plenty more opportunities to go stargazing in the future, I became angry at this stupid disease for interfering with what I wanted to do, and angry at God for leaving me here for so long. And now today, it’s tough to think about the fact that I am starting year two. I had gotten to a point where I had accepted the fact that I just need to take one day at a time. Well-meaning people will often ask me how many drugs I have left or how long it will be til the end. These are questions I can’t answer, and I have more or less come to terms with not having answers to. But every time I throw a drug bottle in my empties box and see the pile grow a little more, I think about the pile it came out of….a pile of unknown size. On good days, I think, “That’s one more bottle closer to being better!” but on bad days, my mind creates a picture of a mountain of full drug bottles so big that the growing pile of empties doesn’t even look like an ant hill in comparison. This is not a journey that has a known ending date or even destination, so I try and focus on the here and now, seeing how God is working in the midst of it. But even as much as I try to take it one day at a time and not focus on the time, it’s hard to think that I’m starting another year. This last year has been tough. I don’t expect this next one to be easy. And dare I say it? I don’t know how many more there will be in this journey.... But God promises to go with me all the way, and I guess if He's going with me, the journey will be worth it!
PS: (From me, not my friend) I am currently not losing weight. I'm actually gaining some at this point because my limitations have made it much harder to be as physically active as I should be. But rest of it, spot on.
