Saturday, April 2, 2016

Honesty and Telling The Whole Story

Yesterday, I found this photographic gem on my husband's computer. He took it the day he came home from work to find me hiding on the island (where no one could touch me) and eating straight out of a gallon of ice cream while our children ran around (obviously sans pants) destroying everything they came into contact with (even though the little one looks like some kind of golden angel baby in this picture). 

Yesterday was a similarly challenging and frustrating day with the boys, and I've been in a fair amount of pain as my Rituxan infusion from last week hasn't kicked in yet. So I was really glad to find this photo because it helped me figure out how to laugh about my day instead of crying like I wanted to. I thought other people - especially other moms - might be able to relate to the extreme honesty in this picture, so I shared it on my Facebook page and in Mamas Facing Forward. But I have to admit that I wasn't quite prepared for the huge response the photo got. So many people laughed and said they could completely understand the feeling conveyed by this picture.

The experience got me thinking about the value of of honesty and telling the whole story - which is a topic I have been thinking about a lot lately in relation to this blog. For almost eight years now (wait...really?? Yes! Almost eight!) this blog has been a space where I have honestly shared my journey through life, marriage, and motherhood after being diagnosed with rheumatoid arthritis in the middle of law school. But I'm sure my readers have noticed - especially those of you who have been reading this blog for a long while - that recently I haven't been doing a lot of personal writing directly on this blog. Yes, I've been sharing links to honest stories that have been published elsewhere, but I'm also sharing other information that I think might be useful to those living with rheumatoid arthritis. I've even opened up my advocacy efforts to include the chronic illness community as a whole. It's been quite some time since I sat down and just wrote a blog post to help me work through my own feelings, the way I used to. There's a couple of reasons for this change - and, based on my recent experiences with the benefits of honesty, I've decided I want to share them here. 

The first reason is probably obvious: a financial one. Everyone living with a chronic illness knows that it comes with a huge financial burden. The biologic I currently take, Ritxuan, literally costs $10,000 per infusion, and we all know that insurance doesn't always provide the best coverage despite the necessity of these medications in our lives. And though I am very proud that I managed to graduate law/grad school despite my diagnosis, that accomplishment also comes with a crushing amount of student loan debt. Debt that I have been unable to make a dent in since I haven't been able to obtain the type of job I thought I would have due to my health. Also? Preschool is so expensive. We only send our kids a couple of days a week and it still literally costs almost as much as our mortgage. So, since there are a couple of wonderful and supportive websites out there willing to pay me to share my stories, it's hard to avoid the desire to save everything worth writing about for a paid gig. Because at least that way we all benefit - you still get to read my stories, and I get to feed my kids and pay for my meds!

But there's actually another reason, too. When I first started writing this blog after my diagnosis, I wrote only for myself. I don't think anyone else even knew it existed, except maybe APL. But then I slowly started sharing it with friends and family, to help them understand what I was going through and spare myself the need to constantly repeat my story to everyone. From there this blog has grown to allow me to love and support people I've never even met - but who I share an intimate bond with because they also understand the reality of living with a chronic illness. I've been so honored to get countless emails from people telling me how much my blog has helped them get through difficult times. It makes me happier than I can say to be turning my negative experiences into something positive, but I have to admit that it has also made me feel a bit wary. I feel responsible for the stories I tell and the impact they may have on others who are struggling, if that makes sense. So, instead of writing my emotional stories in the moment like I used to, that feeling of responsibility has created the habit of taking some time to process my feelings and experiences before writing about them. I try to give myself a chance to see the bright side of the situation, the lessons to be learned, and the progress to be made - so I can share that with my readers as well.

Because the honest truth is that this shit is hard. Living with a chronic illness is hard. Raising kids is hard. And sometimes doing them both at the same time feels downright impossible. To be honest, sometimes when I try to face forward and look into my future, all I can see is a lifetime of doubt and pain and exhaustion and what feels like failure. But you know what? I've come to the realization that admitting these overwhelmingly negative feelings exist is often the first step in figuring out how to move past them. 

I'm reminded of why I chose the title of my blog in the first place. From This Point. Forward. See that first period? The one after the word "point"? I put it there for a reason. It represents a point in time from which you can decide to move forward. But it isn't just one point in time. It's this point in time. This one right here. You don't have to face forward every second of every day. The important part is that when you struggle, you can always pick a new point. This one. And, from this point, you figure out how to face forward.

3 comments:

carlascorner said...

Love this. Way too often we hide all or portions of the "ugly" truth. (I've never tried sitting in the middle of the kitchen eating ice cream, but I might now ...)

Tikhonova Olga said...

Thank you for sharing this photo and your experience. I definitely agree with you that chronic illness requires a crazy amount of money, and besides that a lot of time and energy (to visit doctors, to take medicine regularly, you know what I'm talking about).

Your kid is very cute, by the way :)

And I also agree with you that living with a chronic illness and raising a child seems almost impossible. I have a RA since I was 13 (I'm now 28). I have a husband, but we don't have children yet. Arthritis being one of the reasons. I'm actually afraid how life changes when you have a baby, I've seen my friends and relatives having children, and I doubt I have that amount of energy the child requires. I admire your strength and the amount of time you spend on writing about your experience living with RA. It helps me very much, to see how other people cope with it. I wish you and your family all good!

Olga.

~Mariah~ said...

Hi Olga ~ I can certainly understand your concerns about having kiddos, because sometimes they do require what seems like an ungodly amount of energy! I will say that if it is something that you want in your life, you shouldn't let arthritis get in the way. It IS possible if it is something that you really want. If you are interested in chatting with some more moms and moms-to-be who are managing with chronic illnesses, I invite you to join my FB group Mamas Facing Forward: https://www.facebook.com/groups/mamasfacingforward/

Best,
~Mariah~