My Chronic Sorrow Triggered

Recently intense feelings of sadness rose up in me … something like depression but intermittent. Upon reflection, I realized my chronic sorrow had been triggered.

I first learned of chronic sorrow when a friend, after hearing that both my children suffered from myotonic muscular dystrophy, pointed me to this web site.

I have only read the editor’s and author’s forwards to the book, Chronic Sorrow: A Living Loss, because I just don’t have it in me to read about the historical mistreatment of the mentally and physically disabled. The author closes her book by reflecting on the inadequacy of her language to describe the pain and poignancy of the human experience of chronic sorrow. If I garnered the stamina to read it, I might find a kindred spirit. The author, Susan Roos, is intimately familiar with this condition.

Chronic sorrow is a normal grief response associated with ongoing living loss, like that experienced by parents of children with chronic health conditions, caregivers of family members with Alzheimer’s disease or other on-going illnesses, and couples experiencing infertility. The feelings can be intense and are often expressed as anger and frustration. Confusion is also common.

It is the emotional-filled chasm between “what is” versus “what should have been.” As long as that gap exists, chronic sorrow is likely to recur periodically.

After looking at my triggers, my recurrence of intense feelings of grief made sense.

• If you follow me on Facebook, you know that I have just gone through a month-long battle with Medicaid and Social Security to reinstate my daughter’s hospitalization after it was discontinued through no fault of ours. Talk about frustration.

• In the midst of this situation, my daughter missed an appointment with her pulmonologist because I forgot that we were told at her last appointment to come to a different location. I missed that part of the reminder call and didn’t notice that I had inserted the alternative location on my iPhone calendar. I just had too much on my plate. Unfortunately the receptionist received my frustration and anger. Talk about confusion.

• However, it was the intense sadness that welled up while I selected a birthday card for my daughter that proved to be a major trigger. I couldn’t find one that fit our situation because all the verses raved about how proud the parent is with their child’s independence and accomplishments. This occurred at the same time that I celebrated with friends their grandchildren’s graduations from high school and college.* My “what might have been” was triggered big time.

• Additionally, I have been trying to arrange a trip for my daughter and me to attend the annual MDF conference. However, her bi-pap machine is too heavy for either of us to lift in and out of the car. The company who supplies her equipment delivers unit to hotels. That would work for the conference. But I have never been to Nashville and would like to see some of the area while we are there. How to accomplish that? I’ve been researching portable units. They are quite expensive. It is as though she is expected to be tethered to her home … tethering me as well. I am angry and frustrated with how hard this is and with the lack of understanding from the respiratory professionals I deal with.

• Even when I travel without her, I have to make sure everything is in order before I leave. She is capable of staying by herself for a few days, but would not be able to handle anything that might go wrong at the house. She doesn’t drive, so, in addition to packing for myself, I have to make sure the house is stocked with food that is easy for her to fix when I’m not there to cook. Sometimes it is overwhelming and just easier to stay at home.**

• Unending caregiving is a trigger. I’m fortunate that my daughter’s health is stable. Still, she has regular doctor’s appointments. I’m the driver and the time it takes cuts into my day. Frankly, there are other things I would rather be doing … like writing. Again, my situation is not nearly as demanding as many other’s experience and I almost feel guilty for complaining.

Just knowing that these overwhelming events contributed to triggering my chronic sorrow provided relief.

*I am grateful for my friend and her sensitivity to my chronic sorrow. After reading my memoir, she asked me if my chronic sorrow is triggered when she talks about her grandchildren. She is the only friend who has asked. That meant a lot to me. We have an understanding: She will not change her behavior around me. I will deal with my feelings. I am fond of her grandchildren and would not want to miss hearing about their lives or celebrating their milestones.

**I am grateful for wonderful neighbors and friends who give my daughter permission to call if she has a need while I am gone. One friend who lives at a distance even offered to come and stay. While that isn’t necessary now, I am touched by her offer.

I would love to know if  you know about “chronic sorrow” and what, if any, experience you have had with it.