I have ankylosing spondylitis and several mental health issues. I asked my mother some questions about them impacting my life. Here’s what she had to say:
What was I like as a child?
You were always physically active – as a baby, stretching and leaning toward what you liked/wanted. You enjoyed crawling, walking, later bicycling. I enjoyed watching you do backbends and cartwheels at about ages 6-10. You wanted to be scored – 1-10 – as though in the Olympics. You loved kittens and puppies. You enjoyed holding them and carrying them around. You were inquisitive. You were very shy as a toddler, often hiding behind my skirts or my legs so you would not have to talk to people who addressed you. You enjoyed spending time with people of all ages as you became an older child. You became friends with adults and enjoyed learning new things such as tennis and fishing from your grandparents. I had come to believe that “it takes a village to raise a child”, so I encouraged your independence in going alone by bicycle into our village and forming many relationships with nurturing adults there. I allowed and encouraged you to be outspoken to the point of some thinking you were “too sassy”, but I believed that as a female in this society, you would need to be able to speak up and take care of yourself as you grew up. There could easily be a book about how you were as a child, so this will have to be an incomplete capsule.
Do we have any similar quirks that you have noticed/ Do you think these quirks are the result of nature or nurture?
Quirks. Quirks seems to me to imply unusual oddities. I am not sure these things are odd, but we have many similarities. We both enjoy the outdoors; we prefer activity over sitting still. We both have trouble looking people in the eye. My mother also shared that difficulty, interestingly. We are both introverts, needing a lot of time to ourselves to restore our energy. I write better than I speak, I think you do also. I am sure there are many more – we both tend to want to take care of people, to fix personal problems, although historically we have both had trouble with our closest relationships. We both have intensely wanted to save the world, to help people. We both love the philosophy and social ministry of the Episcopal Church. I tend to think these things are primarily learned (nurture), but there may be an element of nature.
Did you ever think there was something wrong with my health when I was growing up, middle school, high school, college, post graduation?
My first answer was No, absolutely not. However, I later remembered that you used to cry intensely, with no apparent explanation that I could find, when you were a baby. The first time this happened was after you had a bad reaction, I thought, to a childhood shot. However, it happened several times more and I could not soothe you and never knew why. I did wonder if there was something wrong, but then as you grew up, you did not continue to cry like that and I did not think of it again.
It was not until you moved to California and began having unexplainable recurring health issues that I began to wonder what was going on, whether you had some bigger health problem.
When did you realize I had Ankylosing Spondylitis? What were the first thoughts that went through your mind?
In February of 2013, you had been sick for a number of weeks and doctors did not know what was wrong. You kept going to Urgent Care and not getting relief. I was very worried and began looking up your symptoms on line. I suddenly found that some of your problems were symptoms of Ankylosing Spondylitis. I had a terrible sinking feeling, but I did not think you could have this disease, because we had been told mostly males get it. I remember feeling really sick and scared and I said something to you about it. That is when you told me about your lower spine showing up as fused when you were in college and that you were also wondering about it. It turned out you do have it. I felt heartsick, sick , sick. I could not sleep and I felt responsible. My heart was broken and I questioned bringing you into this world to suffer, but then I always responded to myself that I could not regret bringing you into the world because you are so precious and your special gift of who you are is so special to so many people. I felt helpless and angry. I felt you did not deserve this and it was so very UNFAIR. I cried many tears and was very depressed. I wanted to change places with you so you could live your life healthy. But, even in my despair, I kept coming back to the wonder and beauty of your self, for which I am unspeakably thankful.
What is Ankylosing Spondylitis to you – without looking up a definition? How has your definition changed over the years, especially since you’ve known about AS since before I was born?
To me, *AS is a painful progressive disease of calcification of the spine. I did not know as much before you were diagnosed. I did not realize it was an autoimmune disease, nor did I understand previously what an autoimmune disease is.
*(Learn more about Ankylosing Spondylitis at www.spondylitis.org)
What were your first thoughts when you learned of my newer diagnoses of severe depression, anxiety, and possible PTSD?
I thought, and think, that it is normal to have deep grief over too many sadnesses, stressors too close together. I find the lines are blurred between labels of mental illness and reactions/responses to life problems. Both exist, but there is a crossover where it is hard to say which is which. I have learned a lot in the past year/year and half about how incapacitating severe depression can be. I am distressed for you to be so severely impacted, although it makes sense. I am hopeful that you will reach a peaceful core of living.
Looking back now, do you recall any warning signs from when I was younger for any of these conditions? What is the most difficult thing for you to accept or understand about my diagnoses (AS, mental)?
Looking back, I see that you always felt things deeply. You wept with great feeling when pets died. I am not sure that it is bad to feel deeply. Too many people brush such feelings aside and they become callous. You were sometimes “moody” (grouchy, snappy) as a child and teen and you tended to isolate yourself from me and from others. I am not sure how or if those would be related to depression or anxiety, maybe.
The most difficult thing for me to accept is lack of relief. Your AS does not get better. Your plans and hopes for your life have been disrupted/diverted and that is very hard to accept. Your physical pain and your weariness are hard to accept. I want all of these things to be better and it is hard to accept that they continue to be present.
What is it like to be a mother of an adult child with severe health issues?
I feel helpless. I am 3000 miles away and cannot be there to help as much as I would like. It is hard because I feel I don’t know how you are really doing because you don’t often tell me. I want to make everything better and I can’t.
What moment were you proudest of me before I was diagnosed with AS?
It is hard to pinpoint a single moment of pride in you. I was proud of you when you wrote letters to express your feelings as a child and teenager. I was proud of your work with other youth in Episcopal youth programs. I was proud of you graduating from Meredith College with high honors. I was proud of your dedication on the soccer field, through the many soccer years.
What moment have you been proudest of me post-diagnosis?
I am proud when I hear you speak to groups about AS. Your writing makes me very proud. I am proud of your involvement in your church and diocese. I am proud of your engagement with friends and your lovely potlucks. I am proud that you left an abusive relationship.
How do you take care of yourself to honor me? Are there changes you’ve made in how you live and approach your own life after I got sick?
I am writing these blog answers to honor you. It is not in my nature to be this open with the public. I prefer to be private, except in specially chosen relationships. So this is for you.
Otherwise, I continue to eat carefully and stay fit to take care of myself. Most of all, I have tried to give up worrying and to give myself permission to live my life.
What is something you’ve not said aloud that you think about often, related to my situation?
This is the hardest thing I have ever encountered. I can see the blue sky and the bright flowers and the green trees though.
What causes you the most pain – that you can’t cure me, or that you wish this had never happened to me?
What a question! I wish it had never happened. And I wish there was a cure. Maybe there will be..
What is your greatest hope, your greatest fear, about my life with these diseases?
My greatest hope is total reversal – no more symptoms – for you to be able to live healthily. My greatest fear is for you to experience incapacitating despair.
What are your wishes for me, considering the reality of my life?
I wish for you to enjoy a meaningful life in which you feel you make a difference. I wish for you to have good friends and deep relationships with individuals who love and care for you and for whom you give love and care. I wish for you to have ever-present peace and joy.
Do you appreciate being my friend on facebook, has it changed how you are able to understand what I am going through? How does my openness about my struggles affect you? Do you wish you had more, or less, transparency about the daily battles I have? Have you considered whether knowing more would help or harm your stress level?
Yes, I feel more included in your life because of seeing your “news” on facebook. I also am more aware of what you are going through. I would rather know through you allowing me to see your life on facebook than to not know at all. I am learning to deal with the stress of your daily battles. I like it when we can talk about things in person or in conversations or letters.
There have been times I have been very sick and you have offered to get on the next plane and fly over to take care of me. I’ve always said no. What are ways you have figured out to help instead of being here in person? What are your thoughts when I’m sick across the country and you know there is nothing you can do to help me get better? What makes it easier to be so far away?
Well, I pray for you and for your caregivers. That is something I can do. I feel very helpless when you are sick all the way across the country and you do not want me to come. I feel frustrated. I have to trust others to be there to take care of you. It helps when there is someone there whom I can be in touch with to let me know how you are doing.
What have you learned through this process? Has anything good come from my being sick?
I have learned to let go, so to speak. Although I love you and care deeply about your journey, I have learned that it does no good for me to continually worry and let myself be miserable. I have learned to give myself permission to live and enjoy my life. I know that is what you want for me. I am always here for you, though, and I hope you know that.
What do you want other parents of adult children with chronic diseases to know? What is important?
I would tell them to try to be understanding that their adult child is going through a lot and I would tell them to try not to take it personally. I would tell them to let their child know they are there for them when the child needs or wants them. I would tell them to listen to their child when the child wants to talk and to take responsibility to find out information about the disease. I would suggest to the parents that they find or utilize a support system for themselves, either understanding friends or other sources of help.
What questions do you have for me about my fight against chronic disease?
I just want you to keep me informed about what is going on, to the extent that you can, in whatever ways that you can. Thank you for all that you have done so far to keep me informed. You are precious to me.
Caroline is a retired Sociology, Anthropology, and Archaeology instructor who lives in Oriental, North Carolina with her husband, Gary, and several pets. Her days are spent gardening, running, reading, traveling, and enjoying the outdoors. She also spends time cultivating relationships with good friends and is active in anti-racism work in Eastern North Carolina. She has four grown children, six grandchildren, and one great-grandchild.