“You think you have no energy now? Just wait…”
I am nine months pregnant with my first child and am scratching my head as to why this well-meaning person thinks this a helpful thing to say to me. And she’s not the only one. I’ve had dozens of lovely people tell me that life as I know it is over, I will never sleep again, etc.
Are they worried I expect motherhood to be easy? I smile politely at all of their advice, but Inside I am torn between annoyance and laughter. Many of them don’t know me well enough to realize, but I stopped expecting life to be easy long ago.
When I was 21 I was diagnosed with rheumatoid arthritis, a chronic autoimmune disease that causes inflammation in all of my joints, as well as overall fatigue. Not long after I was diagnosed with fibromyalgia, a syndrome in the same “family” as RA that causes muscle pain and tension, and, you guessed it, overall fatigue. There are other symptoms as well, but the bottom line is that I am never without pain, and my energy levels are depleted quite easily.
So you can imagine that in general, easy is not something I’m overly familiar with.
The emotional and physical adjustments to these circumstances took me years to come to terms with. I started dating when I was 20, long before I was ready, and had a broken engagement when I was 26. This challenge was a blessing in disguise, as it got me into therapy with a wonderful therapist with whom I worked for several years. At the age of 31 I met my husband, who is incredibly supportive and essential to making my challenges much more manageable (and a terrific guy to boot). We married a couple of months before I turned 32, and after multiple difficult medication adjustments, I got pregnant. I was incredibly grateful to get pregnant so soon after we started trying. But it has not been an easy pregnancy. Months of not being able to keep food down, increased pain in multiple areas, an even greater loss of energy and sleep…not easy.
But hard doesn’t have to mean bad.
One of my favorite sayings is “Pain is inevitable. Suffering is optional.” Of course, the first time I heard it, in the midst of a painful arthritis flare up, I wanted to punch the person who told me it in the face. But gradually I realized how empowering it really is.
Now when I say gradually, I mean GRADUALLY. I remember about five years after my diagnosis, right after my broken engagement, I was in a dark place. I was still showing up to work, but only a few hours a day. The rest of my days were spent catching on the sleep I lost because of staying up all night watching TV. I’d watch anything and everything, whatever would keep from thinking, whatever would block out my pain, both physical and emotional. And then one night, not even the TV could block out my agony (or maybe it was just that there was nothing good to watch. G-d works in mysterious ways). And I thought- is this what my life is going to be from now on? Am I going to look back at my life as an old lady and see nothing but a series of television shows? Surely, I can do better than that? I know I have a lot to give, if I am able to stop making it all about my pain.
I threw myself into giving to others, through my work at the nonprofit organization Jewish Learning Exchange. I started to really give my therapy a shot, instead of just going through the motions. And I found myself again, when I was finally able to put myself aside. There is a seemingly contradictory truth from the Torah, that I never really understood before this, that the way to self-actualization is through focusing on others. You give in order to grow. And when it’s hard to give, you give anyway.
Life brings pain. All kinds of pain. But G-d gave us the freedom to choose our response to that pain. I can smile through it, laugh around it, and see the beauty in spite of it. I choose my focus. G-d put us in this world to grow and reach our full potential. I often wonder how different a person I would be if I hadn’t been faced with these challenges. Would I have grown in the same way if I had had an easy, carefree life? I honestly doubt it. It is an interesting balance of praying that my difficulties get better, and yet simultaneously doing all I can to rise above them.
Now, obviously, this is an ongoing process. Sometimes I am more successful than others. But I believe that most people who know me consider me to be a happy person, and even those who know of my health issues don’t realize the full extent of them. And let me be clear: I don’t believe with any challenge of this magnitude that you are ever really “over it”. I grow in my acceptance over time, but there will still always be days here and there when I am struck anew with the pain of it, the struggle, the loss. But those days pass, as again I remember, I choose my response.
So motherhood. Another challenge. A different type of hard. Bring it on.
Postscript: My wonderful daughter is now 11 months old, and a constant source of joy. That’s right, I said constant. Because even when she’s screaming her head off and we’re crying together and my body feels like it’s falling apart and I feel like it’s all too much, there is an everlasting ember of joy glowing in my heart knowing that I am a mother, after all this time.
Oh how very right you are! I’ve had chronic pain for over 50 years now, and tend to assume that everyone knows the response to pain is a choice. I found myself quite irritated when a friend stopped over to visit, saw my swollen hands and feet, and started saying how sorry she was to have “bothered” me when I was so clearly in pain. She had a very hard time understanding that pain is a constant, whether it shows or not, and I was happy to see her, happy to talk with her — in short, pain had nothing to do with my happiness! Pain changes everything — and nothing at all. Congrats on being a mother! Have fun with it!
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There aren’t many who ‘get’ mothering with disability, especially chronic pain. I reared five kids and was constantly being told either I couldn’t do it, or that I couldn’t really be in pain. The kids are almost grown, now, and they all are totally worth it. 🙂
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I read your article in Aish,com. I have bothe osteoarthritis and RA as well as Fibromtalgia. As i read how you are in pain every day, i couldn’t help but wonder if you are taking medicatiob to help the pain and i don’t mean pain killers. For Fibromyalgia my doctor has me take Flexeril at bedtime. It is a muscle relaxer, but it helps you to go through all four stages of sleep. one reason we are so tired is because we don’t get the fourth stage of deep sleep, after the REM stage. This will help you with that sleep and relax your muscles. I alsi take Diclofenac for inflamation and Neurontin, which dulls the nerve endings so we don’t feel the pain as much. For RA which i was jyst diagnosed with two years, afternoticibg both my index fingers twisting towards the middle finger on each hand. My rhuematilovist startef me on Humira, but there are others like it, which helps with the pain but also stops or slows down the bones being mis-shaped. I hope you have found the right medications for yourself.
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Hi! It’s nice to know that somebody out there is also going through the same things I’m going through. Comforts me in a way. I also have RA. And our little one is currently 4 months old. 🙂
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