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5 Things I Miss From My Life Before Chronic Illness

I miss the life I had before I was sick. There’s no way around that. No amount of pragmatism or positive thinking can change the fact that chronic illness has taken away many things I enjoy. It’s often said that we don’t know what we have until it’s gone, and that’s been entirely true for me as I’ve grappled with my conditions. These are five of the many entries on my “list of the lost,” which documents both major and minor pieces of my life which have fallen by the wayside.

1. Financial Security

Like many chronically ill individuals, I’m currently doing the Dance of the Disability Denials and Appeals. I have no idea how long it will take to win my case… months? Years? In the meantime, despite what the Social Security Administration thinks, I really am too ill to work full time.

I live with a sizeable Sword of Damocles dangling over my head: Will this be the month I cannot pay my rent? Will I be homeless soon? What will happen to me? I walk around my apartment — small, but safe, ADA-accessible and beloved — and wonder how much longer I’ll be able to keep it. My extreme financial instability does nothing for my health, needless to say. I’m very stressed and anxious about it, and it’s actually driven me to suicidal thinking at times.

2. Buying Groceries

The supermarket might as well be an obstacle course. I try to shop when the stores aren’t busy — right after opening or right before closing — but it’s still a struggle. Reaching a high shelf and lifting something can be painful. The light, sound and crowds can be overwhelming. I can’t carry a lot of bags, and the foods that are easiest for me — vegetables and fruit that can be eaten raw, without preparation — can’t be stockpiled, so I have to make several trips to the store over the course of the month. What’s more, I don’t drive, which means that in addition to finding the energy to go to the supermarket, I have to make sure I have enough in the reserves to contend with mass transit and drag my groceries on the bus with me.

So why don’t I have my groceries delivered? There are some items I can order online from places that offer free shipping, but food isn’t one of them. The local supermarkets don’t do it, and the companies that offer delivery usually have steep fees and significant markup on the products. I need to spend that money on actual groceries instead.

3. Library Books

I can’t even begin to properly articulate how much libraries have enriched my life. When I was a little kid, my weekly trip to the library with my mom was one of my favorite activities. I knew every inch of the children’s section, loved the librarians, and was so proud when I could finally write my name well enough to get my own library card. Whenever we moved, I quickly sought out the nearest library and made myself at home. I’ve done the same as an adult.

I now live in a city with lots of beautiful, new, ADA-compliant, sparkling clean libraries. As usual, when I moved into my apartment I sought out the nearest branch and procured a library card. However, since I’ve been ill I’ve been cut off from the library. I can’t check out books anymore because I just cannot guarantee that I will be able to return them in three, six or even nine weeks. I have such limited energy that making an extra bus or bicycle trip to the library to get or return books — something I would have done effortlessly in the past — is out of the question.

The only suggestion my library system has for disabled or ill people like me, who mostly stay at home, is to get someone else to check out and return our books. Again, that’s not at all feasible. They do have some eBooks available that I can check out from home, but those don’t work for a lot of people, including me — staring at a screen for too long exacerbates headaches and makes my eyes hurt. Some cities have Bookmobiles and Books by Mail programs for the ill and disabled. Mine does not; they apparently think everyone’s going to be able to hop in a car and visit them.

I cannot concentrate the way I used to and I can’t read nearly as much as a result, but I could use the escapism and entertainment that books provide. Considering that books have been one of my true loves since I was small, losing the library really hurts.

4. Enjoying Long Days

Before I became so ill I had many full, wonderful days full of adventure. When I was in college, I balanced a full course load with about 35 hours of work every week. After graduation I continued to multi-task and pack a lot into my days whenever I could. There was one memorable Saturday when I carried the lead banner in a parade in the morning, went to work in the afternoon and evening, and went to a rock concert that night. Another time I spent 15 hours at Disneyland. When I traveled, I careened from one fascinating place to the next from dawn to dusk. I might have been tired by the evening, but it didn’t stop me.

Now, unless I am having an exceptionally rare and amazing day, I can’t get through four hours without crashing from extreme exhaustion. Doing something as simple as going to a doctor’s appointment or seeing a friend for a few hours is enough to take me totally out of commission for days. As the saying goes, with my illnesses, “If you play (or really, do anything at all), you pay.”

5. Saying “Yes, I can!”

Back in the days before my health went south, I did all sorts of fun physical activities. Even though I had asthma and could not stand for long periods of time, I did my best to work around those limitations. Could I do it? Yes, I could! And I did!

That “Yes, I can” is no longer automatic. I’ve struggled to keep as much physical activity in my life as possible, but it’s a mere fraction of what I used to do, at a much less strenuous level. Most of my former adventures would be completely out of reach now. I still try to work around my illness, but it’s a much larger obstacle and I have many more limitations than I did before. I’m always calculating the effects of changing variables of time, health, financial cost (if it’s not free, it’s not doable, generally), risk and any post-exertion payback that might be happening.

Chronic illness continues to make me pay: in time, money, relationships and emotion. The balance is never settled. There’s no way to ignore that; it’s my life now.

How does one cope with that? I can’t speak for anyone else, but I try to assess my losses with careful reflection and brutal honesty. I ask myself: At this time, what’s likely to be gone indefinitely? What could possibly improve in the immediate and long-term future? My illnesses aren’t curable, and I don’t think I’m ever going to get to enjoy those 16-hour days again, but I’d like to think some of the other things I miss might eventually be doable in some way. I’m not much for sunshine, rainbows or false hope, but I do consider the possibility that there might be help I haven’t uncovered yet.

I allow myself to mourn, in the meantime. The things I’ve lost are important to me; I am unhappy that they’re gone, and I need to give that its due. If I’m angry about it, I let myself be angry. Letting grief run its course – without minimizing it, explaining it away or trying to defuse it with platitudes – is the only way for me to own it and continue with my life.