KosAbility is a community diary series posted at 5 PM ET every Sunday and Wednesday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic. There are two parts to each diary. First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and/or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.
Susan Boyle author of The Woman I Was Born to Be page 93
“Anyone who has experienced depression knows that it is very different from being unhappy. When you are unhappy, you can be cheered by love and support, but when you are depressed, it’s like being cut off from the rest of the world.”
During my experience with clinical depression 9 years ago, I reacted by withdrawing and cutting myself off from the rest of the world. Several events seemed to trigger my behavior. 7 years prior my mother (my best friend) died of cancer, less than a year later my husband of 25 years died suddenly of a massive heart attack (age 52), 5 years later I developed breast cancer and was treated with surgery and radiation and a few months later retired from my job at age 55. (Several of us retired early because of incentives that would only be offered at this particular time. Everyone said you would be “crazy” not to take advantage of the opportunity. So I did with little real planning for how I would spend my time. My husband and I had no children so I found myself alone in our home with my beloved cat, Sammy, and no purpose in life. Whether my thinking had been affected by the side effects of cancer treatment, my continued grief at the loss of the 2 people I had loved with all my heart, or the abrupt life change caused after working 32 years in a career I thoroughly enjoyed but was exhausting at times I cannot say. All I know is that I could feel the depression coming on and I was unable to think through a solution.
Thus began a downhill journey into withdrawal from the world. It was gradual at first, not always answering or returning phone calls, avoiding social situations, not caring as much about housecleaning, cooking or my appearance. I remember feeling extremely self-conscious if I was out shopping during the week when normally I would have been at work. I didn’t think of myself as old enough to be retired and yet here I was in the stores with others that , to me, seemed much older and clearly retired. Perhaps that is when I started to pull back from my community and just stay at home. It was easier and no one could see or judge me. This time of isolation lasted about 2 1/2 years. At some point my friends and family (2 sisters and a brother) realized that something was wrong, but really didn’t know what to do.
In the beginning I talked with friends on the phone expressing my regret at the decision I had made and trying to come to terms with the fact that I could NOT go back to my job. I tried going out for lunch, movies and other social occasions, but none of these outings helped me with my profound sadness. My home was a safe haven where I felt somewhat less stress. It was a feeling I had experienced earlier in my life right after the death of my husband. At that time I had great difficulty being in noisy, brightly colored surroundings and just wanted to be in my quiet, small home to grieve and try to make sense of this enormous loss.
As time passed, I no longer accepted invitations out or agreed to “maybe” consider them depending on how I was feeling that day. More than likely I came up with an excuse not to go. My health, home, finances were all affected as I sunk deeper and deeper into depression. I continued to take thyroid medication as long as I could get the prescription renewed over the phone and could have it mailed to me. I had been on tamoxifen to prevent recurrence of breast cancer, but stopped taking it when the prescription ran out. I was unable to leave my house to go see my oncologist and, truthfully, didn’t care if the cancer came back and ended my life. I saw no hope of it ever improving and I was miserable living the way I was. As I saw it, my 2 sisters and brother had their own lives, jobs and families and would not miss me and I was becoming a huge burden for them. However, I did feel the need to be around to care for my cat. I did not want him left alone. We had been through too much together and because he had been chosen by my husband I would never let anything happen to him.
Fears began to surround me. Fear of driving my car because I wasn’t having the routine maintenance done, fear of answering the phone (before caller ID) because I didn’t know who was calling, fear of having anyone come into my home as I had no energy to clean it and fear of being seen (even in my own yard) since I had neglected haircuts, dental care, and wore the same clothes nearly everyday.
To keep from being bored and trying to keep my brain from atrophying I read books (lying on the couch with my cat sleeping on my chest), watched a little television (especially enjoying the televised state legislative sessions) and worked the daily newspaper crossword puzzle. The paper was delivered to the mailbox at the end of my long driveway, and since I didn’t want to be seen, I picked it up at 4:30 AM every morning right after it was delivered and it was still dark. I also got the previous day’s mail, put seeds in the bird feeders and went back in the house never to appear again until the following morning. Exercise was not a part of my life. The crossword puzzle became an obsession for me and if I could not solve all of it, I phoned for the answers - at $1.50/min. Some of my phone bills had an additional $100. added because of my great need to complete the puzzle. (I did not have a computer at the time). Some evenings I went to bed at 4:30 PM, watched a little TV and even though it was still light outside, prayed for sleep - the only thing that gave me any relief from this “hell” I was in. Somehow I did not lose my faith in God but as time went on, and no solution was in sight, I explained to God that if I did not wake up one morning that would be fine with me - although I did not like the idea of leaving my beloved cat without someone to care for him.
Family and friends were stymied by my behavior. Sometimes I was able to answer the phone - though the person on the other end had to do most of the talking. I didn’t even know about the terrorism on 9/11 until a friend called several times that day and when I finally decided to answer the phone told me to turn on my television! Another friend called almost every morning - she didn’t always get a response, but never gave up calling. One of my sisters called every Sunday at 4 PM. I always answered that call. It was the only time all week that we communicated, and I didn’t want to lose contact with her.
Problems that turned into crises developed. Where I live winter is cold and snowy. I have a long driveway that needs plowing. After a few snowstorms it went unplowed which could be dangerous since since first responders could not get to the house in case of emergency and I was truly stuck inside. I was able to get enough courage up to call a neighbor and ask who plowed for them and then had the same company plow for me. Another time the furnace quit and I wore a winter hat and mittens to bed. I was afraid to have a repairman come to the house - irrational, I know, and after 2 days HAD to tell my older sister who lives 50 miles away what had happened. She immediately came to the house, called the repair company and waited with me until the repair was made.
Because my car was not driven the battery died and then during an ice storm, the overhead garage door became frozen to the cement and would not open. I was unable to solve either problem and was simply in a state of panic. Again my sister drove to my home, got the door unstuck, called a towing company and after they got the car going, somehow got me to come with her while we went to the repair shop to get a new battery and see if other repairs were needed. She did the driving, but I needed to pay the bill.
During this time of isolation, I missed holiday dinners that normally are spent with my siblings and their children. I was afraid to drive (though they always offered to pick me up no matter how great the distance), my self esteem was at an all-time low and I felt I had nothing to talk about with them, my hair was a mess and I felt I had nothing appropriate to wear on these festive occasions. I was totally miserable on these days as I ate something micro waved, held my cat and read a book.
For a while I was able to buy groceries as long as one (or both) of my sisters accompanied me. I had no grocery list, no interest in cooking and simply bought ready to eat foods. Eventually I could not muster up the energy to go to the grocery store. So the sister living closest would buy food weekly, bring it to me and leave it on the front steps. After she was driving away I would open the door and bring it in the house.
I was able to pay my bills by mail though I don’t remember balancing my checkbook. Luckily, there were no bill collectors knocking on my door.
There were other missed events and smaller “crises” as a result of this self-imposed isolation, but I would like to move on to the event that helped me get back to living again.
After more than 2 years, my sisters were weary and said they just could not do this any more. I knew that if they stopped being my lifeline I would probably be hospitalized and I envisioned having to live in a locked facility for the rest of my life. That thought was enough to scare me into making a change! My sister insisted that I find a mental health clinic in the area, make an appointment and that she would take me there and do everything she could to support me. I knew that I had no choice. Admitting that I needed to see a psychiatrist was one of the most difficult realizations I have ever faced. On the day of the appointment I was physically ill, crying, and dreading my sister’s arrival. Somehow she got me in the car and to the clinic. I asked her to stay in the waiting room while I met with the doctor. Much to my surprise he was not wearing a white jacket, but had on a bright Hawaiian print shirt, khaki pants and sandals. His office was comfortably messy and he had many animal prints on his walls. As we talked I began feeling a little more comfortable and at one point I actually laughed - something that had not happened for such a long, long time. He had gained my trust and after drawing a small sketch of what was happening in my brain and explaining that what I was going through was NOT MY FAULT I decided that I would do whatever he recommended. That day I left his office with an antidepressant as well as an anti-anxiety med. M y sister brought me home, I immediately began the meds, slept well that evening and the following morning awoke with a new feeling of energy and wanting to tackle the many dirty dishes that were in the sink. I was extremely fortunate. The meds I began using are the same meds I rely on today. I see a therapist regularly and am working with a nutritionist to eliminate my consumption of sugar, dairy, gluten and prepared foods. I take necessary supplements and am increasing my use of organic products.
Getting back into life was a gradual process. I took “baby steps” learning how to drive again, buy groceries by myself, make appointments to get dental care, physical exams, haircuts, etc. I still needed the support and understanding of friends, family and my therapist. But it all came together and I couldn’t be more grateful. Even a new cancerous breast tumor three years ago did not discourage me. Again I made it through surgery, radiation and chemo.
My life today is an absolute joy. I have returned to the church of my childhood and consider members of the church my extended family. I work part time at this church and because I am frequently there, consider it my second home. I am a grateful member of al-anon and an active volunteer in several organizations where I have met amazing people. I belong to 2 book clubs and am beginning to do some traveling - something I never thought possible - I have overcome a fear of flying and am just waiting for the next travel adventure. My home no longer looks the way it did when it was a “prison” for me. I have added color to the walls, remodeled the kitchen and am doing lots of decluttering. I still get anxious when someone comes to visit, and, sometimes, when the phone rings but I am making progress with both.
I probably am most proud of getting involved in the mental health community. I volunteer at a locked treatment facility which I absolutely love and am on a steering committee with 4 others to organize a local NAMI (National Alliance of Mental Illness) group within our community. My dream is that the stigma of mental illness will be gone one day and that individuals and their families will be comfortable seeking help earlier than I did.
My story is long and for those of you that are still reading - thank you for letting me share my experience. I have been stable for nearly 8 years and am now living a life that I never thought possible. My confidence grows stronger with every new “adventure” and I am determined to maintain a positive attitude no matter what lies ahead. On my refrigerator are 2 magnets that sum up my new life goals. One says “TREASURE EVERY MOMENT’” and the other, “LAUGH OFTEN”.