The Boston Home- Kristine's Story

By Kristine Schiebel

At 23, I felt rebellious. Living in Albany, working in a corporate job, it was dark and gloomy. My college friends had told me about Provincetown, so, in May 1997, I decided to quit my job and look for summer employment in this beautiful beach resort. The summer job I found working at a B & B turned into a year-round property manager position at a small cottage colony. I became a Massachusetts resident. 

I built a life for myself there. I fell in love, made friends, and found community in this small, friendly town. I loved Cape Cod and the ocean. It seemed life could not get any better.

 In October of 2002, when I was 29 years old, I was out with friends celebrating the end of the very hectic tourism season. We were dancing at the Atlantic House, the oldest bar in Provincetown when I suddenly had a dizzy spell and fell. I attributed it to maybe having had a couple of cocktails. It was unusual, but at that age, I was still partying, maybe too much. 

The following weekend, my sister invited me to Killington, VT for the weekend to celebrate her birthday. My parents were going to be there. My family had always been close-knit. Driving up, I noticed that I was feeling some vertigo, not to mention that my right hand and right arm were tingling. With the excitement of seeing family, I hoped it would pass, attributing it to the elevation of Killington. But by the end of the weekend, I knew this wasn’t true. I had to hold on to a railing just to walk down a few stairs. I didn’t tell my family what I was experiencing, because I did not want to burden them. My mother, especially, had always been doting and tended to over-worry. 

On arriving home, I immediately made an appointment with my GP. He ordered an MRI at Cape Cod Hospital. He said that it was definitely related to my central nervous system and brain, which made me very fearful that I had a brain tumor. My right eye was painful and flickering as well, and my vision was diminished. Then, I developed numbness in my right arm, followed by weakness in my legs and more vertigo. It was fear that crippled most. I was too scared to ask questions. I wanted to stay in denial. I was so young then. I didn’t have the strength to respond to what was happening. I felt like a child, helpless, wanting to hide in a corner.

After waiting a whole weekend, my doctor finally told me the results of the MRI: probable MS. My first thought—for two seconds—was tiny relief that I did not have a brain tumor, but seconds later, I broke down, because this was life-altering news. Upon receiving the diagnosis, I told my partner, Carrie, that she did not have to go through this. I felt guilty, and that it was unfair to her. We were both so young. She deserved to live her life. I would understand if she left. She said, “Absolutely not. I am here for you.” I felt the power of unconditional love—it was immense. So, we put forth our strength. We were ready to fight. 

At that time, Carrie and I were caretakers of a ten-cottage colony unit. I quickly retired from such a rigorous and physical job. Carrie was by my side throughout the first year of my treatment. She drove me weekly to Beth Israel Hospital in Boston for the first month of my IV treatment. Luckily, we found help on the Cape and received home VNA services. I quickly realized how lucky I was to have a loving partner and family support. Friends came over often. We had potluck dinners. I knew I had a long road ahead, but I felt confident surrounded by friendship and love. 

By the following spring, my second consecutive flare-up of MS led to bilateral optic neuritis, present in only 5-8% of MS patients. It rendered me legally blind with one eye at 400/20 and the other at 200/20. This prompted my doctor to recommend Cytoxan, a chemotherapy drug used for patients with aggressive MS. This would kill those nasty white blood cells that were aggressively attacking the protective myelin around the nerves in my brain! It worked. I had won the first war. I lost some hair, which was not good, and some weight, which was good. I felt empowered.

By July, I had another MRI and the results were good. Many lesions had gone down, if not receded completely, and amazingly I regained some of my vision. Wow! I think I saved some serious brain damage. I remember calling my mother to tell her the good news, and I could hear a faint cry in her voice, which surprised me. I suppose I had taken her love for granted. My mom and I became closer. She would call me a lot, and check up on me. She would say, “Carrie is your rock. I am happy that you have someone.” That moved me. She would ask how I was eating and suggest foods. She would tell me about the latest research she and Dad had read about in the New York Times. It emphasized her love for me.

Here I was, with my body back and knowing that time was precious. As I have learned, this disease is progressive. I would never take anything for granted, or anyone. I could stand up straight, and walk, and I was running. Running down the beach, taking in all of that sea air. I was going to make it.

Inspired by this recovery, I took control and researched what to eat to nourish my body and feel good. I became neurotic about food, eating plenty of fruit and fish, which are plentiful in Provincetown. I ran half an hour every day and went to the gym six days a week. I learned how beneficial it is to maintain strength and endurance, and a nice body. I could no longer drive, so my bicycle became my transportation until I could no longer use my legs. I learned about other healing techniques and practices, including yoga, and I would practice on a daily basis. I overdid it with yoga mats everywhere in the apartment, which drove Carrie crazy.

In 2004, we moved to a more convenient and quieter apartment in town. At that time, there were not many options for treatment, so I was on an interferon drug. Once a week, Carrie would stab me with my IV injection of Avonex. The only side effects turned out to be a headache and fatigue. Whatever—just like waking up with a hangover and the next day I would feel fine. Then, I found out that it only has a 33% efficacy. It turned out that it also elevated my liver enzymes. My GP in town said, “Are you still partying a lot? Your liver enzymes are through the roof!” That comment made me angry. She knew I was sick, and working so hard to fight this disease. I had never partied enough to elevate my liver enzymes. My neurologist started me on Copaxone instead of the interferon, but this drug also had low efficacy. 

So, I decided to take matters into my own hands, knowing that I would have this disease my whole life. I found out that acupuncture is helpful. I eliminated dairy and gluten from my diet, exercised, and prayed. Yes, I became spiritual. I guess you could call that the gift of desperation—God. Talk about something that brings you to your knees! Having been raised Catholic, I returned to my faith. I knew it had been there for me before, and would be there for me now. I feel like my beautiful life was synchronistic—coming to Massachusetts, moving to Provincetown, and meeting my first love. If that had not happened, I would not be in Massachusetts with the best healthcare and insurance for people with disabilities. I really don’t think that I would be here without spirituality. You have to believe in something bigger than yourself. 

By the end of summer 2004, I made the decision to go back to work, as I was denied disability the first time. Yes, I know 30 is too young to apply for SSDI, but the optic neuritis had left me legally blind. My eyes had healed to 20/60 with transient blurriness. Carrie got me a job at her magazine doing secretarial work. The job increased my confidence but did nothing for our relationship. Still, I was proud that I had completed a whole season at the town’s local magazine, using my voice and my personality.

It had been clear by the early part of 2005 that Carrie and I were approaching the end of our chapter. After 8 years together, we decided to end our relationship as amicably as possible. I rented a room in a friend’s house. 

In November 2006, I was invited to a potluck by a friend from work. I was introduced to Heather, the daughter of the host. She asked who brought the sushi. I said I did because I didn’t have time to do anything, and we laughed. I felt strong, showing no signs of MS. A social, healthy 33-year-old. 

In the back of my mind, I would ask myself why I was still partying. I should be grateful to be stable. Kristine, WTF! I should stop drinking, and eat better. Who was I fooling? I was strong but taking it for granted—like a college kid partying it up every night.

But what saved me was that Heather was very much invested in my MS. I told her on our first date on December 15, 2006. She responded that she had a similar neurological episode happen to her. We bonded over it. She fortunately did not have MS and did not care at all about my disclosure. How lucky was I? 

Heather was instrumental in getting me to a better place because with love anything is possible. I stopped drinking. She was my biggest cheerleader and supportive of my new health regimen, no partying and staying healthy. We had lots of fun together. From the time that I met Heather, I had been on 3-4 different medications, during which I was deteriorating physically. She was always there to catch me, literally, to hold me up and stay strong, keep fighting. She took me to every appointment, and when she couldn’t, her mother, Ellie, did. I inherited a mother-in-law. She came with the package. I became very close to Ellie, and she joined my MS care team. Just knowing that you are not alone is everything. I continued to fight my MS with a new treatment called Rituxan. 

Fast forward: On my 40th birthday, I went to a neurology appointment, accompanied by Heather and my sister Kara. We were planning to go for a celebratory lunch afterward. Unfortunately, after testing my strength, and seeing me walk, my neurologist declared me to have secondary progressive MS. Reality set in at that point. Happy birthday to me. 

Luckily, I had the comfort of Kara and Heather and the security that they would be there for me. So, I focused on having something to look forward to. Heather surprised me with a trip to Sedona, Arizona, which was amazing and beautiful. With the lack of humidity there, I was able to walk 20 yards, which was new for me at that time. Something small to celebrate, even though I knew it would not last. Forcing me to stay in the moment and enjoy it.

By summertime, I was officially using a walker and a mobility scooter, accepting the state of my disease, knowing I had support and love. I still wanted to be part of life. I wasn’t ready to throw in the towel and isolate myself in a prison of disability and disease. I worked during the summer as a hostess at a restaurant. I always loved working with people. I felt empowered and strong. This was my town. 

I knew I was pushing myself, especially in the summer heat. Heather would drive by the restaurant and throw me an ice pack. So sweet. It helped and I got through it. It made me stronger. Every day, I would say, “Not today, MS. You’re not going to get me today.”

Six months later, I had a second Rituxan infusion. Heather could not accompany me, but her mother did. I felt comforted and loved. Heather called me that night to see how the appointment went. I noticed that she did not sound good—weak, tired, and slurred speech. I did not have a good feeling at all. I thought, there had been so much focus on me. I need to tell Heather to take care of herself. 

The next morning, I woke up panicked, and a little dizzy. I thought it was because of the infusion. A few minutes later, I got a call from Heather’s phone number. My chest sank because it was not Heather. It was a friend of her mother’s. The voice said, “Kristine, are you sitting down?” Nervous laughter-of course I was sitting down! She proceeded to tell me that Heather had passed away. 

I was frozen, paralyzed with my mouth open, trying to say, “What?” and then hanging up. My friend took me to Heather’s mother right away. That’s when I finally lost it, crying uncontrollably. Apparently, it was a brain aneurysm that occurred overnight. Ellie was never able to give me the full details. We did stay in touch and had weekly lunches, for a while. In the meantime, while trying to grieve, I had to figure out my life so I could at least get by for the next few months. I sought out help to stabilize my mental health and at least keep me living at home. During this time, a friend of mine had lost her job and housing, so I said that she could live with me, thinking it would be a win/win as she could help me with my daily care. I had no time to make decisions. I was just determined to stay in my home, so I made my friend Mary my caregiver and we signed up for the adult foster program. It was soon clear that I had made the wrong decision. She was controlling, verbally abusive, physically threatened me on one occasion, and kept me from seeing my friends. When my sister Kara came to visit, she opened my eyes to the reality that I had to get out of this unhealthy situation. 

I thought to myself, I still have my voice and my mind. I am not going to let this woman ruin what is left of my life. With the help of my therapist and Kara, I found the courage to stand up for myself. My breaking point came one day when Mary was being unnecessarily rude and ruthless. I said: “You need me more than I need you!” and told her I could not live like that. It jolted me into action. I was surfing online for options other than the geriatric nursing homes, where Mary had occasionally threatened to drop me off. I typed “MS long-term care” and found The Boston Home. My social worker confirmed that it was a great place and said she would recommend me. I was scared of leaving my home of twenty years and the few people that I still had in town, but I also felt hopeful.

I had been in a very dark place. Losing the love of my life and my disease quickly deteriorating had left me isolated. I no longer had Heather, but I remembered her telling me: “You don’t have to live imprisoned in that little apartment.”  Her love carried forth as I made the decision to make some changes. I gave it over to God, and thought, if there is a space available, then it is meant to be.

Upon receiving the news that I was accepted to The Boston Home, I had a mix of excitement and fear. After being so dependent on one person and living in a small town, this would be where the strength and courage that I had bound up in me would need to come out. Miraculously, within 8 months, Lucille welcomed me with such love and compassion. Just another reminder to never throw in the towel when you think you are at the end of your rope. This would be my new home, where I could feel myself on my own wheels or whatever. When I first moved here, you should have seen me. I would zip down the halls to feel the wind in my hair.

I made some friends, laughed and commiserated. There is always room for growth in every situation. It was refreshing to be around folks who had been through a similar journey/nightmare rollercoaster of MS. Everything about MS and the possibility of healing and recovery had taken over my life for the past 20 years. Now, I could just relax in my own space and with my own people, even if we did say “F. it!” sometimes. Unity would be our strength— a renewal of strength just like after my remitting from my first MS attack.

Being disabled, my biggest fear was losing my power because I felt like my power was in my body. But, I realized that as long as I had my mind and my voice, I could regain the power I thought I had lost. I learned to hold on to my power and use my voice. “Always remember that your present situation is not your final destination. The best is yet to come.” Never give up. Stay strong. Have faith.