Over the Rainbow

“OVER THE RAINBOW”

I remember coming home from work one day. It was sometime between July 8 – 10, 1995. My 9 year old daughter Stephanie was visiting some relatives on and off through summer vacation. Thank goodness that she happened to be away on this particular day. I remember walking into my bedroom to check my answering machine. When I listened to my messages I started to shake and cry. It was my mother’s social worker calling to tell me she had had another nervous breakdown and that I could call her at Heritage Hospital. A psychiatric hospital in Somerville. I called Heritage to speak to my mother. I could not hold back the tears as well as some anger. Anger because this is a difficult situation for me to deal with. It is hard to see your mother this way. I mean this is your mom. Someone you want to admire and look up to. Someone you want to be like when you grow up. Someone who is supposed to take care of you. Someone you can run to when you’re feeling down and all you need to make you feel better is a hug. These were things that I always wanted and yearned for.

When she answers the phone she sounds nervous, frightened and you can tell she has been crying. I said “Mom”? And she started crying and apologizing. This is where it becomes difficult. She sounds so weak and lost. I don’t know how to handle it so I just scream & cry “why, why?” So many emotions are flying through me. So many thoughts are running through my mind. I hate it. I wish I had a mommy. We hang up and I feel lost and very confused.

I made arrangements for my daughter to be away for the next week or two so I had enough time to tend to my mother’s situation. The next day I went to Heritage hospital to visit my mother. After you sign in, you need to be escorted to where she is because it is a psychiatric ward that is kept locked. Before I can see her, her Doctor briefs me on her condition. They tell me that the normal evaluation lasts for ten days. Basically that means she will be at Heritage for at least that amount of time until they feel she is mentally healthy enough to be released. When I finally get to see her she is still very teary eyed. She is very shaken up and she openly expresses that she wants to go back home. She is confused and does not know why she is there. I try to ease her mind the best I can and explain what happened and tell her she needs to stay there to get better.

The next time I go visit her she is a confident, sassy woman. She struts down the hallway with an attitude and speaks about how she lived her life many years ago. It was nice to see her this way. It reminded me of the mother I knew when I was just a little girl. She was in great health and I wanted her released. Unfortunately that was not a decision that neither she nor myself could make. I do not know if the choice the Doctors made to keep her there was the right one or not. All I do know is that the longer she stayed the more she began to deteriorate. Her social worker would call me and tell me she was refusing to wear clothing and would constantly stroll through the hallways nude. She was also sticking things down the toilet bowl. Anything she could find. Hairbrushes, utensils etc.. When she would wear clothes she would hide food in her bra. I did not witness any of this behavior but I received enough phone calls from her social worker and hospital staff to make me aware of what was going on.

When her release day finally arrived it did not go too smoothly. She was released in the morning. By that evening she was brought back to Heritage in what the doctors called “An infantile state”. According to them she was curled up in the fetal position crying. This is when everything began to worsen. The next phone call I received was her Doctors telling me that she was just rushed to Cambridge City Hospital because she was having heart palpitations and she fainted. I arrived at Cambridge City Hospital and asked what room she was in. I remember walking into the room and seeing two beds. Both were occupied by sickly old woman. I was confused. Why did they tell me my mother was in this room? I figured they made a mistake until I took a closer look and realized that one of the women was in fact my mother. I hardly recognized her. She was a gray haired, frail woman with a sunken in face and dark black circles around her eyes. She had all sorts of tubes coming in and out of her. All I could do was cry. I ran out of the room hysterical. I remember almost hyperventilating thinking she was dying. I kept telling the nurses that she was dying. I begged them to do something. I don’t recall ever seeing my mother look like this. They told me that she was refusing to eat so that was the reason for all the tubes. They assured me that she was stabilizing and that she was not going to die. My attempts to go back into the room failed. I had had enough for that day. I needed to go home and rest. At this point I was emotionally drained.

Once mom regained her strength, Cambridge City Hospital sent her back to Heritage to finish her psychiatric evaluation. The worst had just begun. I received another phone call from her doctor but this time he was calling from Mass General. He told me she had an abscess in her spine and needed to be put on antibiotics. I’m thinking, how did this happen. How do you just develop an abscess in your spinal cord? The first time going to see her at Mass General, I remember walking down this beautiful hallway with huge cherry wood doors leading into one bed private rooms. As I walked down the hallway I heard screaming. Not a scream of pain but a scream of insanity. My heart began to race because I knew it was my mother. I walked into the room to find both wrists and ankles strapped to the bed. And both hands wrapped in bandages that made her look like she was wearing boxing gloves. She didn’t respond to me. She kept repeating the name “Dorothy, Dorothy, Dorothy”. Over and over. The nurses thought that was my name or the name of one of her children. I told them that there isn’t a Dorothy in our entire family.

When she wasn’t screaming out names that did not make sense she would slip into a catatonic state. There she was strapped to the bed, catheter up inside her, bruises all over her arms from all the different needles they have stuck her with just gazing out into a world that no one can see but her. Sometimes she would slip in and out of sleep. Other times she would begin to take fits. It was because of these fits that her hands were bandaged up and her arms and legs were strapped to the bed. She would try to pull out her catheter and her I.V’s and would attempt to get up but the pain in her back would shock her back into lying down.

As the days went by she seemed to become more and more insane. She would lie awake in bed screaming. Sometimes obscenities, other times just a bunch of gibberish. It would get so loud that the nurses would need to close her door and just let her ramble. This would go on for days, weeks at a time. She did not recognize anybody and did not even know where she was.

She had many doctors while she was a guest at Mass General but no one could tell me what was wrong with her. Her only diagnoses were the abscess in her spine but no one could tell me what caused it. They also couldn’t explain her insanity. The only notion they came up was that her blood was so poisoned by the infection in her spinal cord that was having some sort of negative effect on her brain. Her condition became so bad that before you entered her room everyone had to put on protective clothing, hair nets and gloves and after your left the room the protective wear was considered contaminated and was labeled hazardous waste. You were also instructed to wash your hands thoroughly with soap and hot water upon leaving her room. The precaution was taken because it was as though she was one big body of poisons. Her blood, her urine, every bodily fluid swimming through her body was contaminated. One doctor had told me that they had had a blood sample of hers in a vile that eventually grew some sort of unknown fungus on it and that was when they made the decision to quarantine her room. What the hell was happening to my mother?

Just try to imagine this whole event. This was my mother. And no one had any answers. Eventually I was asked by the Hospital lawyer to be appointed her legal guardian. I was 25 years old. She was only 50. I had to go before a judge and explain my mother’s mental state and that we felt that it was in her best interest if I became her legal guardian. The courts had appointed me temporary legal guardian for three months and the situation was to be re-evaluated once that time had expired. The temporary appointment ship was rendered because everyone had hoped that eventually my mother would regain her rightful state of mind and be able to make her own decisions again.

Just when you thought the situation could not get any worse, it did. It got to the point that my mother was not responding to any medication or antibiotics they pumped into her. The infection in her spine got worse. It seemed like every day, I would receive a phone call from a different doctor with a different procedure. I had to give my consent for blood transfusions or for them to run different types of tests. To experiment with different types of drugs for the hope that she would finally respond to something. It got to the point that when the phone rang my response was “Do whatever you want”. Finally the infection had subsided enough for the neurologist to go in and insert a metal rod in her spine. This was to replace the portion of her spine that the infection literally ate away. When the procedure was complete mom was stapled up and sent to Spaulding Rehabilitation Center.

Again she was placed under quarantine and before you entered her room you were ordered to wear protective clothing. After about a month at Spaulding she awoke out of her spell. I will never forget that day. I had come by for a routine visit and when I walked through the doorway, she looked like she was asleep–a sight I was accustomed to seeing during my visits. All of the sudden her eyes opened and she exclaimed “How did you ever find me?” I couldn’t believe it. She was alert and very anxious to talk. She could not recall what had happened to her throughout the prior six months. She did not even remember being in Mass General. All she knew was that she could not walk and that she was sent to Spaulding to be rehabilitated.

My mother went through about two months of physical therapy and eventually was taught how to walk with the assistance of a walker. Her doctors and case workers told me that she would soon be able to function in what they called “Independent housing. That basically meant that they could and would find her her own apartment–handicapped accessible– and that she would be able to function in society on her own again.

It’s now 2018 and I finally took this old floppy disk that has been sitting in my drawer for many years simply reading “My story” to a person that converted onto a thumb drive. I just read the above story for the 1st time in 20+ years. My mom passed 16 months ago and I chose to share this story and most likely many more to come because it reminds me what I have endured and overcome in my life. Growing up with a parent with mental illness is not fun to say the least. I have learned a lot about myself through my own coaching journey. I have painful memories that lurk up now and again. But honestly, who doesn’t, right? I still battle with my gremlins every now and again but I have these great tools now that help me cope and get through it.

I can honestly say that I make a conscious choice every single day to Stay Positive, to Be Kind and to Do My Best. Oh, and most importantly BE THANKFUL.