In Search of Lost Time

"In search of lost time"

I found this line scribbled down in one of my many notebooks the other day. I think it's from a book I read recently, but now I can't remember of course. I'll blame that on the RA brain fog. But anyway, "time" is something that I have tended to fret and obsess about a lot over the years, which I think is only heightened by having a chronic illness like RA. And maybe I'm extra sensitive to it due to getting RA at such a young age? I can't say for sure.

Being diagnosed with RA at 18, the summer after I graduated from high school, threw a big wrench into the timeline of my life. My planned timeline, anyway. Instead of excitedly skipping along to an exciting new life in college, I was forced to deal with extreme, disabling pain.

I started college that freshman year anyway, despite the huge challenges of accepting that I had an incurable disease and taking a full load of classes while trying to fit in with the other students. It wasn't easy, and to this day I have major regrets about my undergraduate college experience. For the most part I've gotten pretty good at keeping those regrets, that sadness and loss, at bay in my ever-spinning mind. Usually.

Please forgive the bad pun (and the amount of times I say the word 'time' in this article), but from time to time I do think about the regrets and losses I've experienced from having RA. Lost mobility, lost hobbies (no more piano playing, drawing, or sports), lost friends, lost sense of security and identity, lost opportunities, and a big one--lost time.

The fear of losing time, losing out on life, will be with me as long as I have RA, I think.

One common fear that I'm sure I must share with other people who have RA is being afraid of how much time I have left before the disease degenerates or worsens more. I had my first devastating taste of RA damage not long after I got the disease, at age 20. A flare-up in my right wrist never went away and became permanently painful and damaged. I had a synovectomy on the joint but it was too late and the cartilage and bone had been eaten away by the uncontrolled inflammation.

What was next? I had only had RA for a little over a year when my wrist was destroyed. This was terrifying to think about. When would my other joints follow the same fate? How much time did I have to do the things I want to do in life?  Thankfully my RA has not progressed at such a rapid pace since then, but this is still a constant worry on my mind. How much time do I have left?

My preoccupation with time has led to some impulsive and maybe "crazy" behavior over the years--especially during my early 20s. People in their 20s often do foolish impulsive things anyway, but I know that I did put my health (and maybe sanity) at risk sometimes simply because I didn't want to miss out on fun. Or perceived fun.

Who knew what would happen with my RA down the road, so I wanted to live like there was no tomorrow! Coming from a conservative family and a history of "goody two-shoes-ness" all through public school, my "antics" are probably considered tame to many people.  A lot of it involved mostly harmless drinking and staying up all night partying. I've never done jail time nor I have killed anybody--yet! (joke)

But seriously, I do remember having conscious thoughts about not wanting to miss out on life and thus throwing myself headfirst into things. This was a major contrast to the shy, nerdy bookworm I was in middle school and high school.

Other than busting into the hotel lobby bar where I worked one night with a coworker as a joke, dancing around a car at 2 AM to Nelly Furtado's "Promiscuous Girl" (so embarrassing) in the middle of a quiet street and infuriating neighbors (especially a visiting French-Canadian dad, but that's a long story), nearly falling off a stage singing karaoke numerous times, or a bunch of other things I probably blocked out--there have been some pretty cool things that came from my RA-related eagerness to grasp life.

One of those adventures was walking in the Dublin, Ireland marathon twice--the first time at age 21 while I was having a bad flare-up in both feet. After hemming and hawing and being nervous about doing it, I finally decided to join my local Arthritis Foundation's "Joints In Motion" team. As a team member I had to raise a minimum of $4,000 (which I did) and then train to run or walk in a marathon. Could I do it? I was scared, but excited.

Sadly, due to very swollen and sore feet, I had to stop walking at mile 9 that first year and drop out of the race. I was understandably upset and disappointed with RA for getting in my way; yet I was still proud of myself for raising a large amount of money by myself for an important cause, flying to Ireland for the first time with a group of people I didn't know well (except my cheerleader cousin), and just giving it a shot.

Three years later I decided to be part of "Joints In Motion" again and attempted to finish the Dublin marathon this time. And I did! After nearly 9 hours of constant, agonizing walking, I crossed the finish line with tears running down my cheeks. I walked all of those miles in honor of my grandma who suffered from severe RA for many years, myself, and for the purpose of finding a cure for this cruel disease. I'll never forget it.

I am really glad that I pushed past my reservations and charged ahead with those amazing experiences. The following years I made myself to do other "adventurous" things I had always dreamed of, such as studying, living, and working abroad in Ireland and France, and traveling and seeing as much of the world as I could despite having RA.

When my mind becomes flooded with sad thoughts and regrets over the things I haven't accomplished in life yet, the missed opportunities, and all of the dreams that might not come true because of my RA--I have to remember to not beat myself up too much.

Gretchen Rubin, author of The Happiness Project books, is a writer I like a lot and I subscribe to her e-mail list, which sends me weekly e-mails of her blog posts and favorite quotes. One of her quotes from this week is strangely fitting, by the Swedish diplomat, economist, author, and posthumous winner of the Nobel Peace Prize --Dag Hammarskjold.

“Do not look back. And do not dream about the future, either. It will neither give you back the past, nor satisfy your other daydreams. Your duty, your reward—your destiny—are here and now.”--Dag Hammarskjold, Markings

No more wasted time spent regretting the decisions and events of the past, or spent worrying about how much time I have left in the future! I do want my duty, my reward, and my destiny to be here and now, even with RA. Or maybe I should say, especially with RA.

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