What I Wish I'd Known About the Grief of Chronic Illness


My niece will be born today. She is the first of her generation in our relatively small family. And we are all thrilled beyond words. As soon as we get the news that she has arrived, my husband and I will meet the rest of our family at the hospital, and we look forward to showering my brother and my sister-in-law and their new precious bundle with lots of love and affection.

As happy as I am on this occasion, I am reminded of something my therapist said to me around this time last year when I was going through a rough period. She said that it is possible to feel two seemingly conflicting emotions at the same time; gratitude and sadness are not mutually exclusive. Perhaps this isn’t the most profound wisdom ever spoken, but it was what I needed to hear then and it is what I cling to now.

Let’s rewind a bit to yesterday evening. I went to our local grocery store with my mom to pick up the ingredients for my husband’s chocolate peanut butter ooey gooey butter cake (his request for his birthday dessert this year). If I am not ordering my groceries online through Walmart’s free pickup service, which I believe might be the best thing to enter my life so far in 2016, then my mom is the one taking me for short bouts to our local grocer. Even though I have been doing a little better with walking lately and staying upright through most excursions, something told me yesterday that I needed to use the electronic scooter for this trip, as it has been necessary so many times in the past. It turned out to be a good choice, as less than halfway through our trip I got that familiar glassy-eyed look and found myself struggling to keep it together. My face began to droop a little on the right side; my speech slowed and slurred; and my behavior became childlike and erratic. I felt myself going in and out of awareness, fighting hard to reserve a semblance of togetherness as we navigated the last few aisles and the checkout line. My vague recollection of the checkout line includes me in my sunglasses, the cashier and another gentleman being somewhat afraid I’d run them over with my scooter, and everyone around me talking in those hushed, comforting tones that one uses to calm a small child.

This was far from my worst presyncopal migraine episode. And yet when the hangover effect of this particular encounter wore off, as it only recently has, I was left with the sobering reminder that I am not better. In fact, I am still really far from where I want to be. During the good hours (I call them that, as I feel that with chronic illness it’s pretty darn rare to have a completely good day), it’s easy to forget that I am this sick. I can’t explain this phenomena. You would think that someone who has looked illness in the eye for over 20 years would really start to wear that identity like a badge. But the truth is that I do my best to rip off that badge whenever I am able. I used to think I did this because I am an optimistic person, but I now think it has more to do with survival than optimism. I can’t get out of bed if I allow myself to think that every day is going to be as painful as the last. So I let myself forget at times or, more accurately, I push it to the back of my mind and put different, happier thoughts at the forefront.

For as long as I can remember, I’ve wanted to be a mother. As a child I didn’t spend too much time dreaming of a fairy-tale wedding or my own prince charming husband. Although I had wildly varying ambitions when it came to career options (why couldn’t I be a veterinarian, an acclaimed author and open my own restaurant all at the same time?), what I thought about most was how I looked forward to one day spending Christmas Eve wrapping up gifts from Santa for my children who would eagerly devour them next morning. It never occurred to me that being a mother wasn’t guaranteed. Occasionally as a young girl at Sunday school, I’d be encouraged to pray to God about the plans and hopes I had for the future. I’d pray for my future husband, and that my parents would remain in good health, and that I’d always stay best friends with Nancy. And I’d pray that I could help all the animals He had ever created, but I don’t recall ever praying about motherhood. It always seemed like a given, so much so that even now I have a difficult time imagining my future without that being at the center.

They say that when you are diagnosed with a chronic illness, it is not uncommon to go through a grieving process in which you mourn the loss of your old self. I think there is truth to this, but my experience has been that this process never really ends. Maybe some people reach a level of lasting acceptance where they are finally at peace with their life as it is now, but I don’t think that’s the case for many of us. Over the years, there have been plenty of times where I have let go of the anger and the bargaining and reached a place where I am, if not joyful, at least content in my present circumstance. But then a friend will get a job promotion and I’ll be reminded of how long it has been since I’ve been disabled and unable to work. Or I’ll see photos of place I’d love to visit in Europe but can’t because of the numerous hills and cobblestone streets that, while lovely, would be a nightmare for anyone in a wheelchair. Or I’ll dream of taking a cross country road trip and be reminded that I often get car sick and that asking my husband to do all of the driving from North Carolina to California because I can’t anymore wouldn’t really be fair. It’s not always an outside source that starts the cycle of grief over; most of the time it is trips like this to the grocery store or the aftermath of taking a simple shower, little ways my body reminds me of my own frailty.

The last few years have quite often found me stuck in the anger stage of grief. I attribute most of that to my little biological clock that seems to be forever nagging me to have children now that I’m well into my 30s. The truth is that I’m heartbroken that I won’t be a mother and that I’ve unintentionally denied my amazing husband the opportunity to be a dad. If I think about it too much, my chest begins to tighten and I start to feel like I can’t breathe. Well-meaning friends and family remind me that women are having healthy children well into their 40s now and that I should not give up hope. And, while I appreciate the sentiment, I can’t help but think that if these individuals spent any significant amount of time with me, they would realize that I am unable to care for myself, let alone another human being. As much as I’d like it to be otherwise, unfortunately, my track record for improvement isn’t a very good one. I am not looking for anyone to fix my situation or to offer words of hope or wisdom. At the end of the day, I think I just need my friends and family to acknowledge that this is really hard.

I never imagined that 22 years after first exhibiting symptoms of chronic illness, I would feel like I was stuck in the same spot. Still grieving. Still learning. I’d like to tell those who are struggling, like myself, that it’s OK if you never get to a place of complete acceptance. And it’s OK if you thought you were at peace only to find yourself sad and upset again because of all the ways your body continues to fail you. You can take all the time you need to grieve for the dreams you’ve had to alter or give up. Finding a place of contentment is not a race with a finish line that you have to reach within a certain time frame. And being sad about your limitations does not mean that you are ungrateful for all of the good things in your life. Nor does it make you less of a fighter.

I will go to the hospital today, and I will hold my niece and give her all the love I have to give. I will tell her about all the plans and dreams I have for us. I’ll tell her how when she is a little older I will teach her how to care for kittens, and how I look forward to someday walking through the backyard together where I’ll point out the metal owl that her grandmother gave me, which is now nailed to my favorite tree. And I will be so happy, and I’ll be a little sad, too. And that’s OK.

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