MS and the Mind
The author looks back at 20 years of living with MS, in which clinical depression has periodically reared its head.
“Depression Deadly as Cancer” was a headline in my local newspaper the other day. Those words were a haunting reminder of the dark place that held me for many years after I was diagnosed with MS.
I took the news calmly at first and was determined not to let it change my life.
I quietly made little changes to accommodate minor yet ever-present difficulties. But the progressive nature of my illness meant continually readjusting my life to deal with increasing disability.
It wasn’t long before I stopped going out at night. Then I stopped going to the mall and did my shopping at stores where I could park directly outside the door. I stopped knitting and needlepointing. When I went to restaurants, I ordered finger food like fried shrimp so I wouldn’t need someone to cut up my meal. I kept trying to pass as normal, but the sadness I felt kept growing.
Within 2 years of my diagnosis, I had given up everything extra in my life. I only did the things that had to be done. I saved whatever energy I had for my husband, Dave, and our 2 children.
That year I had to quit working. It was the saddest day of my life. Ever since I was a sophomore in high school, I had wanted to be a teacher of the deaf. But I had lost the ability to finger-spell and sign. I knew I’d never teach deaf children again. My wonderful work friends tried to keep me involved by inviting me to professional gatherings, but I felt I no longer had a purpose in life. I went into a deep depression.
I was 35 years old. What would I do with the rest of my life? My perceptive daughter, Jamie, was 7 years old when I retired, and she had her own questions: Who would help Mom when Dad couldn’t help her anymore? Would Mom have to live in a nursing home like Great-Grandma?
I couldn’t get over the sadness I felt, nor could I stop worrying about the future. What scared me the most was that the disease showed no sign of letting up. I cried all the time.
I shared my feelings of despair with my doctor, who prescribed an antidepressant. I thought this would be a quick fix—but it wasn’t. It took months to find the right medication and to adjust the dosage. I also started seeing a counselor. I remember walking down the hall to his office as if 100-pound weights were attached to my legs. I sat down on his couch, reached for a tissue, and cried for the next hour. I returned each week and unleashed my feelings.
The combination of medication and counseling helped me regain some control in my life and begin accepting my new reality. I didn’t want to alienate my friends and family by always being self-absorbed and down. At 39, I wanted to be happy again.
I wasn’t the only one in the family who had been dealing with the effects of MS. Dave wasn’t mad at me or my MS—he just threw himself into overdrive, did more and more around the house. Four years after my diagnosis, he had lost 20 pounds and his great sense of humor. He was diagnosed with clinical depression and was put on an antidepressant. The medication worked and he returned to his old self.
When Jamie was 9, she became withdrawn and didn’t want to leave the house. She too was diagnosed with clinical depression. Thankfully, medication and family counseling helped her recover as well. Andy seemed to be the only one whose emotional stability stayed intact through the years. His temperament has always been very laid-back.
Then, 10 years after my diagnosis, the clouds of depression again became too difficult to keep away. Why did the dark come back? I only know the medical studies for which I’d volunteered had not improved my condition. I was tired and scared. Once again, I cried more and slept less. I became convinced that, at the age of 44, I was dying. The middle of the night was the worst because then I was surrounded by darkness inside and out. I began to spend hours each day planning my suicide.
Then something happened that changed everything. Jamie, at age 13, found my suicide letter, which I had hidden in my desk. She confronted me with it, clinging to me as someone would cling to a life preserver. We both sobbed, and I promised her I wouldn’t take my life. Her pleas made me realize I did have a purpose I had lost sight of: I was Mom, and I could never be replaced.
A few nights after that, I was again awake in the middle of the night, trying to figure what options were still open to me. For the first time in my life I asked God for help: “I give up! I can’t do it alone. I need Your help.” The words of a learned rabbi echoed in my mind: “Live each day as if it were your last, and you will live each day wisely.” If now was to be the best moment I was going to have, and tomorrow would be worse, I would make the best of this moment. I would try to accept each day as a gift.
I returned to the doctor, who adjusted my medications, and I began seeing a counselor again. I chose a path for living, not dying.
Now that our children are adults, I’ve had to refocus and find a new purpose for my life. I want to stay on a path for living. I no longer cut everything out. Dave and I travel, entertain, go to restaurants and movies. I’m volunteering again and raising money for the National MS Society. I’m playing bridge with my girlfriends. And I write and speak professionally about the challenges of living with MS. Life is good.
Yes, I still have days when my spirits sag and I question what the future will bring, but I live in hope. It wasn’t easy to write this story, but I’m glad I did. It reminded me that I won’t give up. I hope my story has in some way helped you in your journey.
For additional information
Shelley Peterman Schwarz is a nationally recognized motivational speaker and author of 300 Tips for Making Life with Multiple Sclerosis Easier, a book based on her syndicated advice column, Making Life Easier. Her other books include Blooming Where You’re Planted: Stories from the Heart.
|Last updated May 2006|