Surrender Dorothy: A Memoir: Living with MS

By Linda Tagliamonte

Living with someone who has a serious medical condition can be a challenge. This book reflects on one such case, that of a sixteen-year love relationship in which one of the partners suffers from multiple sclerosis (MS), a potentially debilitating disease. Over the years, the sickness takes its toll, gradually changing one partner from independent to dependent, and the other from lover to caregiver. The emotional difficulties the couple endures are understandable to anyone who has experienced such a relationship.

• Language: English
• Publisher: Gatekeeper Press
• Release date: May 19, 2021
• ISBN: 9781662912207

Book preview

On Monday morning November 23,1998, I boarded the train and sat in my usual favorite spot, the five-seater next to the exit door. It had enough space to set my backpack and laptop case on the floor right next to me. With a two-hour commute, obtaining comfort is of utmost concern.

Usually, I read, but not this morning—not after the horrible, difficult weekend. I had cried all Saturday morning and didn’t finish any of the committee work I should have done. J and I had a heated discussion on Friday night, and I was left exceedingly upset. Hanging on the edge, actually. That Saturday afternoon, I called the mental health hotline offered through my company benefits. It was not an easy call to make.

I’m in crisis and need to see someone right away, I admitted to the foreign voice on the other end of the line. The receptionist didn’t ask any questions but immediately gave me two names to call. Her empathetic response was much appreciated.

I left a message for the Clinical Social Worker whose specialty was sexual identity. Then later, I left one for the psychologist; I thought maybe I might be better off talking to a doctor.

That night, I went to C and V’s house. J and I were invited to attend a storytelling performance at their church. J didn’t want to go, so I went alone. I tried to act like nothing was wrong, but perceptive V saw right through the act. In the car she asked, So, how is D doing mentally and physically?

That was enough for me to admit that J and I were having problems. Not good. That’s why J didn’t come tonight. I’m thinking of taking a job in Europe. J will stay here, and I will move to London. The space might be good for the two of us. I’m so tired of being the caregiver. I just can’t do it anymore.

We understand, said V. We love the two of you and hope things work out.

I was relieved that she didn’t criticize me for complaining.

Later that night, the psychologist left a voicemail. I can’t see you for at least one week, so if you need to see someone right away, I suggest you call another therapist. Great. I couldn’t wait that long.

The next morning, I managed to do some committee work. Good thing I have such great blocking powers. Or is it? J informed me that she had called all our friends and told them what was going on. I didn’t appreciate that and told her so. I said, You’re so selfish and don’t care about me.

It had nothing to do with you, she responded. I’m hurting too. I needed their support.

I left and met my sister for lunch. Her advice was insightful. Dorothy, you need to overcome the guilt and decide what really makes you happy. Think about what you really want.

We went to my aunt’s house and no one questioned me when I announced that J was at a friend’s house. I could tell my mother suspected something was wrong even though she didn’t dare ask. It wasn’t usual for J to not be with me. I tried to act normal, but I felt blank and detached from my body. My head felt like it was going to explode.

That afternoon the CSW called. She had an understanding voice.

I’m not sure I can fit you in on a regular basis, but you sound like you need to see someone right away. I can fit you in tomorrow for an initial evaluation. Then we’ll find someone permanent for you if need be. Is that okay with you?

Yes, thank you. I do need to talk. I was relieved for the validation of my shaky mental state. I didn’t care whether she was a doctor or not.

Well, I’m at a phone booth, she explained. So, I’ll call you later tonight and we can make a definite appointment. I couldn’t believe she had taken the time to call me from a phone booth. My message must have sounded desperate.

The commuter train pulled out. It would be about an hour and a half before arrival into Grand Central Station. I put on my earphones and started listening to a relaxing tape. I desperately needed to destress. Sentences repeated in my brain. Let’s see. How do I explain all this to the CSW? It all started three years ago . . . no, ten years ago . . . I tried to stop my thoughts. I didn’t want to sound rehearsed . . . I met J . . . we fell in love . . . moved in together . . . three years ago, things started to change . . . stop! Stop it! How could I stop my brain from thinking?

Tears started to slowly flow out of my eyes. One side, then the other. I reached in my bag and pulled out my dark sunglasses. Thank God they were large frames. I took out a Kleenex and blew my nose like I had a cold. Discreetly, I wiped each eye.

At the office, I tried to lose myself in work. But I couldn’t stop watching the clock. My appointment was scheduled for 12:00 p.m. It was only 10:30 a.m. At 11:00, I went to the bathroom to brush my teeth and freshen up my make-up. At 11:30, I decided to start walking to the office. It was a bit early, but I didn’t want to be late. Late! It was only three short blocks away!

On the way, I was spaced out and definitely not in touch with my body. I tried hard not to pass out. I’ve had this feeling of detachment before. It happened when I lived alone in Maine. I used to jump in the cold lake water to bring myself back. But there was no lake here.

You can make it, I said to myself. One foot in front of the other. You are not going to fall. You are not going to pass out. Just keep walking. It seemed like it took an eternity to reach the office. I entered the elevator. A federal express delivery man stood opposite me.

Looks like a padded cell, I commented, referring to the walls of the elevator, which were lined with some sort of thick material covering.

Huh? he asked, disinterested. I repeated my statement. Yeah, he replied in appeasement.

I exited on the fourteenth floor and started reading the door plates for the office of the therapist. None of the plates matched her name. I searched through my pocketbook for the note with the scribbled directions. Suite 1400. Okay, I can find that. The plate on the door to Suite 1400 said Mid-Manhattan Center for Counseling and Psychotherapy. Very analytical.

I tried to turn the doorknob, but it was locked. I rang the doorbell, and no one answered. Granted, I was fifteen minutes early. Maybe the therapist was with another patient or maybe she hadn’t arrived yet. I waited. I paced back and forth down the hallway, then leaned against the wall for support. I was so dizzy. Five minutes passed. Ten minutes passed. Finally, the green arrow above the elevator lit up and out walked a small woman with short dark hair and glasses. She looked rather disheveled.

Are you looking for Sadie? she asked.

Yes, I have an appointment. I’m Dorothy.

I’m Sadie. Nice to meet you, she said as she fumbled around in her purse looking for her keys. It was amusing to watch her. I noticed there were two sets of number plates on the door.

Why do you have two sets of the number 1400 on the door? I asked.

Oh, yeah. There are two sets, she said. I just moved in this office and haven’t had a chance to remove one plate yet.

Doesn’t the building have a maintenance department to do that for you? I asked.

Yeah. I should ask them. Too many keys, she added, still fumbling around in her purse.

Too many doors to unlock, I replied.

Make yourself comfortable. I need to do a few things before we start, she said as she closed the door to the inner office. I sat down and looked around the room. One of the walls had pictures of women from Vogue magazine covers. Another wall had a few scarves draped on hangers. Otherwise, the space was rather unimpressive. She must be gay, I thought.

Shortly, she called me to come in.

It was very difficult for me to walk over here, I rambled. I thought I was going to pass out. I felt light-headed and not in touch with my body.

Well, let’s see if we can get you back into your body, she said in a concerned voice. By the way, that’s a normal reaction when a person represses parts of themselves. You detach a part of yourself as a self-protection. Okay, first some paperwork, she said as she moved her bottom around in the chair, trying to get comfortable. I need some statistical data, the basics, name, address, phone number, etc. And I need you to sign this paper regarding confidentiality.

Yeah, I don’t want any information released. I read doctors’ reports in my job and I can’t believe what doctors write in their records about their patients. If people only knew, they’d be appalled. Really private topics.

Oh, I don’t keep any detailed notes, she reassured me. Here’s an evaluation form.

Already? We haven’t even started yet.

Yeah, I know. It’s for when we are finished. Formalities. Okay. What’s been bothering you? she asked.

Well, it’s been going on about three years. I have been under a lot of stress. I left my insurance underwriting job because I was bored and needed a challenge. I took a position in New York—a lateral move, thinking at least there would be some excitement working in the city. Then we merged with a Canadian insurance company. I survived. My boss left and I got his job doing medical research and writing. I finally liked my work. My new boss in Toronto was great. She gave me the freedom to be creative and make recommendations.

Oh, a real adult boss, she commented.

Yeah. I finally felt like part of a group working with the Toronto office as I was never accepted by my New York coworkers, a tight group, mostly men. I worked on revising the cardiac section of our underwriting manual. A tremendous project. I’m not sure you understand how big that is. It was a bit over my head, but I never think I can’t do something, I just plod along and do it. Anyway, it was a lot of stress for me, working with doctors in Toronto, London, and New York, but I got it done. And then we bought another company and now my boss is out, and I must go back to underwriting, which I can’t do anymore. It’s like going back on an assembly line after you have been in the head office. A position opened in London, which I decided to apply for. I told my partner J of sixteen years that it might be good for our relationship to have some distance. Some time to rejuvenate. Well, I guess J didn’t understand why I was saying that. And she asked, Is there something wrong with our relationship? Aren’t you attracted to me anymore? Are you in love with me?’"

‘I love you,’ I said. Yes. But are you in love with me?’ she asked.

‘Well, I don’t feel the desire I used to feel,’ I told her.

‘Are you having fantasies about men?’ she asked.

"I couldn’t lie to her. Yes, I am. She asked the right questions at the wrong time. Normally, I just repress my true feelings, but I couldn’t anymore. I was weak. I was stressed to the max. I was at the edge and it didn’t take much to push me over. I told her I wanted a temporary separation. Time to sort out whether I am gay or not, and if I’m still in love with her. I’m so tired. I can’t do it anymore. I can’t pretend. I can’t do the sexual thing anymore.

Then J asked, How did you do it all these years?’ I said, I fantasized.’ Oh my god. All those times we had the rendezvous with you dressed up in different colored outfits, you were pretending?’ she responded.

‘Well, think about it,’ I answered. Here I am playing a role-dressing up in various colored outfits—the women of color as you called them—it wasn’t me there having sex. Afterwards, we would talk about it like I didn’t know what happened. You would describe to me your experience. You had sex with the woman of color but not with me.’ "How many times?’ she asked.

I told her, I don’t know, not all of them. Sometimes I was into it.’ I devastated her with my honesty. The truth was heavy, too heavy for just me anymore. The problem is, J has multiple sclerosis. It’s been difficult being with someone with a disabling disease."

Definitely, said Sadie. A medical condition such as MS puts added stress on a relationship.

"I feel like a caregiver and not a lover anymore. It’s difficult being both at the same time. Ironically, it was because of the MS that my career took off. Do you know how awful I feel about leaving her? I hate when people leave their spouses who have a disease and it’s not like I didn’t know that she had MS when we got involved. I wanted to take care of her. I wanted to make her life easy. But at this point, I’m not sure I am doing her any good. I don’t think I am giving her what she needs. It doesn’t come easy to me to be a caregiver."

Sometimes people come into our lives and stay for a while and then we grow in different ways and paths separate. You don’t have to feel guilty about leaving, said Sadie. You just have to own what you do and then get on with it.

I’m so weak. I have been crying all the time.

Just own the feeling and cry whenever you feel like it, she advised.

Why am I having these fantasies and why do I fall out of love?

Well, that will take a lot more in depth searching to answer, she responded. I think you need to be set up with a long-term psychoanalyst. Time is up.

I looked at my watch. Only forty-five minutes had gone by. J had said the initial meeting would probably take two hours. I left. I felt like I had returned to my body, but I could see this process was not going to be easy. I made an appointment for the next week. Sadie’s liberal thinking made me feel that I wasn’t such a bad person, at least temporarily, but I still had to face J at home.

How does one throw away a sixteen-year relationship? We had some hard times, but we always got through. The hard times made our relationship stronger. I couldn’t believe what was coming out of my mouth. Was I following the right path? What about our financial ties? The cats? The house? The love?

I always imagined us rocking together in our chairs, two old ladies, in our eighties, remembering the good times, J had said to me.

Looks like the chairs had been pulled out from under us.

***

The first time I met J, I was planning to go back to Maine. I had been living in my parents’ basement for the last six months—writing my first book, grieving over the end of my relationship with the Lioness. The Lioness was an attractive, bright, woman who was ten years younger than me. I was truly in love and in lust. I used to drive to Boston from Maine to see her. Our love affair was so romantic, wild, and passionate!

Then she told her parents about me. She thought they would be happy she had found someone to love. Wrong. Her parents were traditional, upper-class Republicans. Her father had served in the Nixon administration. They were not happy with this left-wing, army-fatigue-clad, dropout person being around, much less making love to their daughter. There was a drastic change after she told them about us. Her conversations were short. We didn’t meet as often. And then she told me it was over. I was crushed and devastated, but I knew I had to let her go. I had no choice. I tried to be strong. It was difficult. And then she would call me out of the blue and I would get that sinking feeling again.

My dad was having surgery and my sister was on welfare, so I went home to help. My sister and I starting a house cleaning business. I spent the first few months of my free time alone mostly at the kitchen table writing my first book on my black Royal typewriter. I was still wearing army fatigues and boots. Shopping malls drove me crazy. I was used to quiet. I had no friends. I tried to get a teaching job in Italy, but it fell through. I had just visited the Lioness in Boston, but we didn’t sleep together. It was difficult for me. I thought maybe it was better to go back to Maine to my secluded life.

In the newspaper, there was an advertisement for a weekly meeting for lesbian women at a place called the New Haven Women’s Center. I decided to give it a try. I needed friends.

On a Monday night in April of 1982, I went to my first meeting. I inconspicuously entered the beautiful old house converted into a meeting place. Dressed in my favorite orange Frey boots, black pants, turtleneck, and dark jacket, I sat on one of the couches and remained quiet.

Soon, an average height, dark haired, rather Rubenesque woman with tight clothes came bounding in and sat next to me. When the leader of the group asked if anyone wanted to start, this woman immediately raised her hand and proceeded to tell us her whole life history.

My name is J. I have MS and my lover of five years left me after the diagnosis. Here I was, dragging my leg, and she threw me out. Everything was fine and then bam! I don’t understand the change. Her behavior was schizophrenic.

Why not call it ambivalent? offered one of the women.

Yeah. That too. Anyway, I’m a Pagan. I’m all alone. And I need friends. I’m scared. I’m a musician. I sing in a woman’s rock band.

She went on and on and I thought to myself, Will this woman ever stop? She dominated the group the entire night.

The rest of the women were nice enough, so I decided to go back the next week. I started to make friends. One night, a few of us went to a show. J attended.

After the show, J and I went for a drink at a newly opened women’s bar, the Mahogany. Because of the University in New Haven, there were quite a few gay bars in the city but not many were women only. This one was especially impressive. Unlike the small dark sleazy joints that one