Family and Chronic Illness

Tiz the Season!

All the world is full of suffering. It is also full of overcoming.

Helen Keller

Have depression? What you can do to help.

Many years ago, I was diagnosed with neurogenic (under active/paralyzed) bladder and bowel. Because the unfortunate tidings were hard to accept and process, journaling and blogging became my routine.  On the web, my pack and tribe came alive. Being part of a group of lively people is so important. Together we trade advice on how to live a full life, get through the work day, live an active existence, and take what is dealt, with our pride intact. Embarrassment during that adjustment period, in the beginning, became part of my life, at least at first.  Amazingly after the initial shock wore off, I rallied to the news.  A new protocol was for me.  Being a casualty of this crazy condition was not a path I wanted to go down. I made a choice to be open about my physical condition. 

At times, I live with depression which is like living with an invisible tiger.  He bites and claws at me; sometimes he is quiet with just a little nudge that lets me know he is there.  At low points, he is persistent and hard to shake off. Luckily, sometimes he leaves. He is a secret in my life because of the shame his presence brings.  My life experience is full of abundance.  He cannot stay if my heart is grateful.

To outsiders I had a perfect life.  My depression and paralyzed body parts were not only hidden, they are hardly ever talked about.  Although my positive self-image was (still is) normal, I continue to deal with medical complications because of having broken and paralyzed parts.  For years, a mantra filled my head: “Class and beauty do not equate to bowel and bladder control.”  Sincerely I believe this. Yet the grueling part for me were the back to back bladder infections, a common hazard of using a catheter to empty my flaccid bladder. The brutal feeling of bladder infections caught me off guard: a twinge of discomfort in my bladder and general feeling of malaise.  OK, that is saying it nicely. The feeling that I could punch a hole in the wall is more like it.  I pushed through the pain with a positive attitude. Being the model urological patient was a high priority for me.  Following the doctors’ orders was (still is) important.   I developed a support system through writing this blog. I had the coping skills to handle my medical condition, most of the time.

For a while all was well. The tiger who strove to steal my life, took a break.  

Shocking news came my way. It was hard to rally a second time.

Last year, I was startled by a new declaration, made by my doctor: antibiotics would now be my companion for the rest of my life. The doctor went on to explain to me that I was now classified with third stage kidney failure. Risk-taking is not allowed. Youthful indiscretions are forbidden, because fourth stage kidney failure means dialysis and getting ready for a kidney transplant. The visits to my beloved urologist of many years became less frequent. I was introduced to a new type of doctor, a nephrologist.  Who ever heard of that?  Kidney doctor is easier to say, don’t you think? Nephrologist! Give me a break!  A new doctor.  The word is difficult to pronounce; it gets caught in my mouth.  In one single, life-changing doctor’s appointment, my school girl, fresh as a pea image of myself, was shattered. I saw myself as frail. My world was rocked off kilter.

Suddenly, my invisible tiger came out and clawed itself miserably to me.  I could not shake it off.  Days and days went by and despair become my constant companion. What I knew was stripped away.  The new doctor, a new protocol, caused the tiger to return, so fierce that he tried to make a permanent home.  The tiger then held fast for months, regardless of what I did.  Through coffee time with friends, hiking beautiful hills, whatever I wanted to do, he gnawed through my flesh and caused a bleed that made me weak. No words popped into my head, as they once did.  If they tried, the tiger ate them up.  The tiger stole my voice.  The prose was gone. The tiger sat on my shoulders then and acted brave.  He became obvious to those close to me; he did not even try to hide.

 Temporarily buying shoes helped.  Cupcakes, warm, flying straight out of the oven, would upset my stomach.  Old friends’ voices felt good to hear, but I did not share my secret.   Nothing of what I really wanted to say was said, because I was ashamed at giving into my fear.  Nothing helped. What to do?

Ready for a change, I took the first step looking outward. I broke free from despair.

At wit’s end I decided to volunteer at a rescue mission on Sunday evenings. Why not?  I needed to fill my time and I was losing interest in feeding the power-hungry tiger. That simple decision changed my life. Volunteer work for me, in the past, had been enjoyable but for the last few years I had become lethargic in my civic dutiesWhen we drove up to the mission for the first time, the bright colors of the building were pleasing to see.  The dinner of fried chicken, corn, biscuit, salad, and cookie was ready to be plated. Many, many plates.  Chicken server extraordinaire duties were mine.  Using tongs, making the decision of who got what, took thought. The importance of my role to decide who got what took all my concentration.  Being a mother of four children I understood that the piece of meat and the impartialness of the allotted combinations was important.  Suddenly, my concentration was on chicken parts.  Not my body parts.  My body felt warm.  My back pain was slight.  I was pleased to see hunger replaced by fulfillment.  My feet hurt a bit, but where my kidneys are housed, in my back, forgotten.

There was no clawing at my heart and forgotten emotion filled me.  At that moment, there was no room for the tiger.

I noticed and really appreciated my life for the first time in months. 

Gratitude filled my being.  The feeling of appreciation for the small things in life caused contentment and that warm fuzzy feeling felt well with my soul.  For so long I was blind to the important things in my life. I have a roof over my head.  I can eat whenever I want.  I have a family to go to when I need help.  Now my outlook became sprightly.  What a sheer relief I felt as I walked out of the mission on that first day.  Every day I need to remember that the small things in life are the most important.  Being the center of my universe does not make me happy.  Looking outward is more pleasurable than looking inward.

My thoughts turned outward, which starved my tiger. For a wonderfully long time he simply disappeared.

 Epilogue: I wrote this essay last year and I am happy to say that my kidneys are doing much better because I am taking a daily dose of antibiotics.  Depression is real for us because we live with setbacks.  This holiday season my suggestion to you is to give to others and seek help if you need it.   If you need help getting through the season, please seek help.  

Here are some USA numbers that might help, if you feel desperate.

Suicide Prevention Hotline: 800-273-8255
Veterans Suicide Hotline: 800-273-8255
Domestic Violence Hotline: 800-799-7233

God bless you. Happy Holidays, Merry Christmas, and Happy Hanukkah.

How do you overcome major set backs?