This writing continues the first part of Living Well with MS.", a personal narrative of my adjustment to the illness and the creation of a new life for myself.
Living Well with M.S.
Text for chapter 3, 4, 5 and 6
The loss of physical capability is something we all experience as we age. There are many other types of losses; we lose our loved ones, our professional identity in retirement, perhaps financial security is lost, but for me, my decrease in energy has been the most debilitating. The limit of time I can now concentrate on work is usually a few hours, preferably in the morning. I used to go all day and have energy for direct community and academic plays. Although I do, now, have some have awareness when I am getting muddled; or when I begin to miss clearly apparent details, it is only because I recognize the symptoms earlier. If I am knocking into things, if I am garbling words, if word access is poor, or if I can not track what another person is saying to me, I need to take a break. I can either switch to a new and unrelated activity, like music, or lay down for a nap if I really feel ungrounded. Since I am disabled and at home, I can do this. What a blessing.
I believe I saw the loss of sustained concentration reflected in the eyes of my co-workers before I knew it was a problem. My tolerance level for everyday frustrations began to dip. I could not understand why I was being treated unkindly after the many years I had devoted to the growth and well being of the agency. It felt randomly abusive. I would come home from work at night mentally reviewing the day. I had observed others expecting me to perform at my prior pace and looking annoyed when I couldn't. I was torn between resting all weekend or one social activity with my husband, which I knew would compromise my upcoming work week. I felt pulled from work and home, and unable to do justice to either role. Many friends told me that they were feeling neglected, and that I must be devoting all my time to my husband, and asked whether I thought that was the fair thing to do and to please be more considerate of them. By this time, knew such comments were fantastic. If they saw how limited I was when I came home from work, they would understand that I just didn't have it to give. The loss of outdoor activites such as camping, kayaking, hiking which had provided consistency and unity to our marriage became dramatically limited.
As I continued M.S. progression, most people were unable to see my more recent limitations; I suppose because others form a fixed idea and expectation of who you "should" be based on their experience with you. I had always been a high achiever. The burden of being expected to perform at an earlier level of stamina caused much personal anguish and eroded my self esteem. In the last two years of employment, I was consistently reminded that I had not met prior standards of excellence and that this was not appreciated. Since that time, it has been medically established that performance lapses were "Due entirely to M.S." By the time this had been confirmed, it was too late. I could no longer perform my job.
I had a colleague who I had hired in my earliest days with the agency. We had been co-therapists for the Partial Hospital Program. We shared a love for theater as well as therapy. We agreed, both theater and counselor roles insisted on self honesty, and we gave one another the same respectful honesty working together. We were peer therapists; she needing to temper her tone with less aggression, I needed more assertiveness behind my authority. We shared the value of self responsibility in life as well as recovery. We became supportive friends to one another.
Gayle had been urging me to quit for several years before I did. She clearly saw it was becoming more and more of a strain; the continued negative feedback was grinding me down. Then she'd say "but the day you leave is the day this place is going downhill! So why am I telling you to leave?" The reason was that she had compassion for me. Although it would be to her detriment, it would mean a better quality of life for me, and she saw that before I did.
When we first began to work together, I would let things roll off me, while she would call people on the slightest inconsistency. We both saw the same treatment issues, but had opposite and complimentary approaches. A worknight was so exciting to both of us that after treatment, we would meet in the parking lot, further discussing strategies and approaches with clients.
Gayle had been planning to move to a Crisis Center in a neighboring state when I was diagnosed with cancer. She told me later my illness had created an existential crisis in her. She did not leave for the new job until she had seen me through a half year of chemo treatments and a summer of radiation. Gayle was a genuine, steadfast friend. At the time, I was 41. She was 44. She believed that life was about preparing oneself for death; that is, to maintain higher awareness while one physically dies. She believed I might die. I was in too much denial to consider death, except in passing. And then it would be to ask myself who I needed to make amends with and what I needed to do if my life were to end abruptly. I did make amends to people I had hurt or mistreated during that time, including the man who had prevented my suicide at 22. I owed him a lifetime of gratitude but had not had the courage to maintain the frightening (to me) intimacy of our relationship.
I also put together a Vietnam veteran theater piece working with combat veterans, consequently experiencing an emotional healing regarding the loss of our brother. The vets and I grieved together, grieved what might have been but wasn't, grieved for the people who didn't make it, grieved for innocence, grieved for the psychic damage that would forever inform their perception.
I think life was more difficult for Gayle and Clark, who stood by as the months unfolded, than it was for me. Gayle replaced me any evening I was too sick to come in. She would keep me informed daily of therapeutic issues from the prior night of treatment. Although I encouraged her to go ahead with her new position, she would say "I can't! Not until you get through this."
Grief and loss are raw material of therapy. We discussed loss constantly. She saw me through the most isolated time in my life and I promised her I would never forget it. Gayle remained working at the agency one night a week throughout my decade of tenure. She ran a Relapse Prevention group which inspired and energized her. Her connection with clients was, as usual, challenging and authentic. In my last few years as Clinical director, she decided to accept a position in our agency as Drug and Alcohol Intervention Counselor in the town high schools.
She loved it. She was making a difference for adolescents who had not always been taken seriously by adults and the students responded by returning for her counseling regularily. Word spread within the school systems that Gayle was trustworthy and "cool". Basically, her approach went like this: Okay, you have a bad home life, grade point average, history of drug arrests, so on. Now is that what you want for yourself? Is this the life choice you want to make? Because it is yours to make and you are making it now. She was marvelous with the adolescents and treated them with dignity and expected accountability. She said she had found her true life calling in the position and even began to do family therapy for students she was working with in the schools. I remained her supervisor. We would discuss the students, brainstorm together, formulate the missing questions for each client and proceed with our usual back and forth discussions. She was both challenging and loving.
In the final four months I worked for the agency, Gayle had been diagnosed with lung cancer. I was now 49 and she was 52. I had told her many times that I would stand by her and see her through whatever life brought her. Little did we know how soon I would be making good on this promise. Although she continued to work throughout my last months, and even for several months after, she became too weak to physically manage commuting to the schools. We would call each other on the phone and when she was out sick from work, I would visit her at home.
Once she was homebound, I could spend days with her. Again we explored core issues of life and death, final work, and laughed together in the darkness. She lived another 6 months. Her final 5 weeks were spent in the Hospice Wing. I was regularily by her bedside. In her last weeks, her husband stayed with her in her room, sleeping in a fold up cot. Friends would take shifts to give him respite. Gayle turned 53 just weeks before her death in June. We had been each other's teacher and therapist, we had spent our last decade of work together, growing professionally and personally. Despite the pain of losing Gayle, I will always be grateful for the decade of work we shared. And I am glad that we shared every moment we had.
There were quite a few well meaning people who told me how great I looked. They didn't know I had spent weekends and weeknights resting. That I could no longer see friends because it was an either/or situation for me and I collapsed without warning. M.S. demanded that I more stringently prioritize, say no, and listen to my instincts regarding energy limitations. I was used to thinking this way; I had been depressed since age fourteen and learned then that if I didn't reserve some energy for myself, I would quickly dive into deprivation mode, which opened the door to muddled thinking, and ultimately, self destructive decisions. My poor choices as a teenager had compromised me by hurling me into a roller coaster ride of emotional spurts and dips. For example, I love play directing. However, it is a formula for disaster while I am also engaged in other activities, because my creativity is not focused enough on the production for natural playfulness. I shut myself down, trying to replenish energy and, in doing so, frustrate myself into a slump, or crash, common to bipolar (manic-depressive) people like me.
With M.S., I now had a physical condition that parelleled and exacerbated the characteristic highs and lows of my depression.
Within a few weeks, I had moved ten years of office books, training materials, homemade floral wreaths out of my office. I removed lamps and footstools, side tables, pictures, stuffed animials and lots of "stuff"; an African woman dancing in flowers, a wooden bird perched on a bookshelf, and some of my plants. I could not completely strip the room, however. I left some posters, plants, a calender and wreath, and of course all the resource materials I had collected into thick notebooks over the course of ten years.
I passed along plants to other staff; I just could not take them home, they had grown in the sunlight of those office windows.
The overflow of furniture and materials jammed into our house looked as if a dump truck had picked my office up and dropped it in the middle of our living room floor. My car, in fact, had been that dump truck.
Jamming treasured books into our bookcases didn't work; so I stashed books on the top shelf of our study closet. My certifications and licenses alone filled up a small U-Haul storage box. I brought home the printer my brother had given me for my office. Extra lamps. The overall impression resulted in a mausoleum for my career.
When I mentioned to my neurologist that I would like to approach the M.S. Society to provide counseling to other patients, he said "You're not counseling anyone". This was a punch in the chest because, although I understood I had lost my job, I did not consider I had lost my profession. I knew my frontal lobe damage was permanent, but assumed the opportunity to practice would be able to be applied differently. Until I took the
Ethics Training. I learned that serious medical conditions are required to be reported to the state certification board and the board could revoke a license if they deemed the counselor was too compromised to practice. I was stunned. I knew I had to leave the job. I could even understand why I should no longer practice. But to revoke my licenses! This was too much. Years and years of study and practice had gone into those crendentials. The possibility of losing my professional status, due to a disease that insidiously damamged my brain and impaired my overall thinking, was unacceptable.
I had never expected my professional status to change so quickly. One week I was the director of an outpatient clinic, the next week I was 100 % disabled and applying for social security disability. I called the Certification Board to step down from my position as Oral Exam Evaluator, citing the disability. It was not a decision I regret. it just made me very sad.
When our brother died, I had this impossibly unshaken belief that he was not dead. He would visit me in dreams, I would see him on street corners jogging past, or hear his helicopter overhead. My brain could not accept he was no longer with us. I felt this same sense of disbelief months and months into disability status. I couldn't NOT be Director of Counseling. I had difficulty believing I was disabled despite medical reports confirming it. I discovered grieving prior capabilities is a loss process in itself. The loss of my professional status was different from my loss of health. I had been grieving my loss of health for years. Losing my professional status was in denial because my self image didn't believe it.
My husband and I were troubled by the effect disability status would have on our retirement, especially financially. We had planned that I would work another fifteen years! He had observed some of my obvious symptoms; recent inability to balance a checkbook, regular loss of my glasses, keys, wallet, and tracking only a portion of what had been said in conversation. He had experienced my heat intolerance for several years; if we cuddled, after five minutes or so I'd be saying "I've got to move!" often tearing my clothes off. But the extent of my brain damage, well, that was different. Since it was my brain, I observed many signs of compromised cognitive functioning.
My most startling symptom was slowed thinking. X and Y used to be easy to add. Now I would see X, I would see Y, but could no longer synthesize them into one. Time limited tasks confounded me, I had to concentrate, focus narrowly and direct myself mentally through stages of the process. Usually the processes were everyday occurances, such as grocery shopping. I would find myself mesmorized by soup cans or certain colors of friut. Everyday objects looked foreign to me. It was as if my brain was in a stall or couldn't hold its charge.
In short, I could not discriminate significant information from trivial. I would notice this driving. Sensory imput bombarded me but I could no longer distinguish the significant from the trivial. I realized then that I had lost the capacity for discernment. All sensory cues were equally important; the stop light turning yellow, the driver waving me on, the children, attempting to walk in front of my car, the cars in back of me, beside me, in front of me, the sound system inside the cars, the dog in the back seat who looked to me as if he might be at the wheel.
If I did transport a passenger, talking and focusing on the road simultaneously was no longer comfortable. I worked at driving defensively, anticipating other drivers' perspectives, avoiding potential dangers. I let anyone who wanted to pass me do so. I would drive at the speed limit, infuriating some drivers, who would be tailgating me until I pulled over to let them pass. A car is a deadly weapon, I knew this as a chemical dependency counselor. I'd seen automobile accidents cause brain damage, paralysis, and death. Familiar, brief trips were still managable. I had been driving to Boston and to New Hampshire for years and years by myself, now I convinced it was unwise. Three of my friends told me that they had noticed changes in my driving; I frequently confused myself, turn myself around, and, in Boston, with so many one way streets, I would consistently take enough turns to completely lose my way. I always had credit cards and did feel comforted that no matter how lost I was, I could always stay at a hotel.
Associations were becoming looser. As a poet, theater director and counselor, my thinking had never been linear. Much of my best work was intuitive right brain, nonverbal. My predisposition toward intuitive awareness now metamorphised into strange messages. I knew when I was misreading things, but the misreading, like dream symbols, subliminally related to my life. In a dream, I might be "getting something" when the phrase symbolized getting ill. Signs, for example, "merge" would look to me like "emmerge" and then immigrant, imitate, imagination and soon I would be in a loop of associations that I had to tell my brain to stop improvising.
Reading sheet music became a problem. Suddenly, familiar musical phrases would unexpectedly look like foreign language. I would look at the notes see hieroglyphics.
On the computer, I would intend to use a word that previously would come to me effortlessly. Now, I could no longer visualize that word in my mind's eye. I noticed I had been simplifying my language, compensating, which made me less precise and concise, less articulate. If I was under time constraint, word retrieval would be compromised. I would begin to stutter and stammer and this would escalate into an emotional meltdown that was embarassingly obvious at work.
Sometimes such incidents would trigger migraines. I would then need to turn the lights out, shut the door, and eliminate any new sensory imformation. I had had migraines since my teens, but now, I noticed, as my symptoms progressed, I was experiencing them several times a week. Alot of times, I just worked through the pain the best I could because I was tired of explaining symptoms that must have sounded like constant complaining. I don't like to dwell on my physical state; for so many years I had been able to access energy, now I was pushing through every hour at work until the day was done so I could go to bed.
These changes in perception and brain processing became the reason for my disability status. I, however, had the most difficult time accepting that I was seriously ill and believed if I tried harder, I would do better. I also knew something was very wrong. It took me some time to believe that I had brain damage.
My staff had been compensating for my loss of assessment skills for months and months before I understood that they were working to relieve me of work I could no longer manage. This is what finally convinced me it was time to leave. I saw myself reflected back in the eyes of a truly supportive clinical staff as they willingly lightened the burden of the job by not asking me for crisis work intervention. We would talk about it after the fact, but generally, at the time of the occurance, two therapists would team together to back each other up.
A deepening difficulty became an obvious problem less than nine months into my disability leave. I had been having problems at work merging simultaneous information. This had been been especially evident, as I have described, when the judgement call was time dependent. I had excelled in rapid assessments; my strength was looking at multiple factors, imagining how they would act upon each other, and drawing inferences from the possibilities. I had used this skill during my years as a retail manager, college teacher and theater director. I took pride in the ability to ask the right questions, to identify the issues being avoided, to ask about the motivations of each person involved.
Clinical Director crisis work depends upon gleaning information such as who the person lives with, whether others in the household were chemically dependent, whether physical violence was present, if there wasany known history of mental illness in the family, the immediate danger to the children, and the most important of all; the client's willingness to invest the energy that recovery takes. Many people who are substance abusers are trying to manage memories of abuse or trauma. Although drugs and alcohol create a temporary numbing out of these memories, they will never take them away. Meanwhile, the user becomes more compromised as rationalizations for continued use escalates. "Addictive thinking" is a particular pattern of distorted thinking that justifies the continued use of chemicals by the user.
My process was to talk briefly to the therapist, review the person's chart, and then interview the person, with the therapist present, to determine level of addiction severity, criminal activity, willingness to accept intervention, and to discuss personal arrangements such as employment leave and child care coverage while the parent was being treated. I enjoyed this work tremendously because skillful recommendations could guide clients most expediently to sustained recovery.
Gradually, however, it seemed that all details were overwhelmingly significant. Before, only certain variables would stand out in bold face, minor ones receeded to the background. Now, everything was equally important, which meant that nothing was significant. I drew on past decisions that had worked for clients, and deliberately slowed myself down to a step by step process, while verbally narrating my reasoning with the therapist, and accepting imput on points I had overlooked. The less hurried I was, the better I could function. I remember one day getting called for a crisis intervention and looking out the window, unable to breathe or speak, unable to talk myself down. Clinicians saw my struggle and approached situations more independantly, which I appreciated, but I also felt ashamed.
Limitations driving were related to this same skill loss. A good driver observes and intuits information, then assesses the significance of each piece of information based on prior experience and current judgement. But with my cognitive difficulties, sensory detail overwhelmed me, and I would mentally freeze because I saw so much contradictory information. My sense of direction, never good, had become worse. Sequencing was more difficult. Reversing directions to return home was nearly impossible.
One evening, driving home from the town center, about a mile away, I was at a four way intersection. Oncoming traffic was moving, they had the right of way although I had a green light, too. Then my light turned to a green arrow. I know that green arrows don't last long. I had been waiting for the arrow, and expected to be allowed to take the right, when I noticed I was cutting right in front of a police officers car. He waved me on, but as soon as I turned the corner, his lights flashed and I was pulled over at the curb of the town library. He told me I had failed to yield, and that he would write me up. I told him I had become confused and made a mistake. What I didn't tell him was that I couldn't process incoming information of green arrow, oncoming traffic, go and don't go simultaneously. I realized this skill is called judgement. One of my past strengths.
For me, it didn't seem as if I had lost my judgement as much as I couldn't accurately decide, within a time constraint, what was trivial from what was significant, because everything seemed significant. I remembered the times I had fumbled for change at cash registers and rooted for misplaced credit cards or coupons with a helpless feeling of not being able to take charge of myself. It was time to re-think driving, and that was the night I began to seriously consider the risk of continuing to drive.
LIVING WELL WITH M.S.
This chapter of my life is at its beginning. Af fifty, I have unexpectedly found myself in retirement. Professional identity has always been important to me; but never the sole definition of identity. I know my disability status had provided a better quality life for me, I believe it has also slowed down progression. As I observed earlier, the final two years of my job were very difficult for me.
My supervisor observed certain fundamental abilities of mine seemed to have vanished completely. Not able to observe myself, I can only say which areas in my brain felt disconnected.
I believe we are born to nurture and develop our potential. In the U.S., our elite standard of living affords us the means to actualize this potential. Most people around the world are less fortunate. There is so much more I am grateful for than what I have lost. The most precious of all is the gift of time. I know that our work time is brief. Health is brief. Youth is brief. And it takes us
a lifetime to recognize we are only here briefly. I have had been graced by learning this early. I hope this narrative will be of use to others who struggle with mental and physical disability, especially thoses who feel isolated and failing.
This writing is only my experience of M.S. The illness never affects two people alike. In my first year of disability, I have found certain attitudes and behaviors can help me to cope.
This is my personal list.
1. Recognize if your doctors are diagnosing you with M.S., you are likely to have M.S. This realization could save you precious time pretending you are not sick.
2. Eat healthy nutritious meals regularily. Do not skip meals or fast. You will compromise you already weakened immune system, causing further health risks.
3. Supplement with daily vitamins. Much of our food is produced in depleted soil or under conditions that artifically restrict animals.
4. Always get the sleep you need. It is common in M.S. to need 11 or 12 hours a night. You could also need a nap during the day. Communicate your limitations to others who may not understand.
5. Know your specific symptoms of M.S. and become aware of the sensory cues that tell you they are occurring.
6. Ask loved ones to express their observations to you about your functioning. If your driving is no longer realistic, don't you want to know right away?
7. Find friends who are comfortable and empathic talking about M.S. Peer support is wonderful.
8. Choose an exercise program that is right for you. If you are heat intolerant, consider aqua therapy. Your body maintains a cool temperature while you are working out.
9. Bring water to hydrate yourself, a great sun hat, umbrella, and don't sunbathe.
10. Recognize and accept you have a progressive disease; impairment severity is unknown. However, stress may accelerate your illness.
11. Determine reasonable time frames for yourself, and clearly communicate them to others.
12. Tell the truth. Do not pretend to be or do what you can not.
13. Learn to slow down. Use grab bars and railings. Use a cane or walker to balance.
Wear supportive shoes that help stablize your footing.
14. Do not let others intimidate you.
15. Enjoy your life and be thankful for it every day. Dwell on the beauty, the mystery.
Doing housework, I would be drenched in sweat. I wore my lightest sundress and turned off the heat. I had a bottle of water that I would constantly drink. Some times I had to stop and take a break to cool down. In the summer, the air conditioning would be set low and I could plan a cool shower when I finished. Overheating is it's own condition. I learned recently that in M.S., heat intolerance can triple your symptoms each degree your body temperature rises. No wonder it felt like imprisonment and co-ordination became bumbled. No wonder I was blurry and out of focus, couldn't concentrate. No wonder.
A good friend of mine suggested a pool. I brought it up with my neurologist who willingly wrote a prescription for physical therapy. I was scheduled 2 to 3 times a week for three months with a Masters' level P.T. He was wonderful. He was thrilled with my small advances and was a great cheerleader. I was motivated by his excitement and my own, as I began to become more stable on my feet. When I had come in the first day, I needed to go down stairs sideways, holding on to the railing. I would be trembling (arms and legs) and fearful of falling. I had to climb slowly and I was regularily annoying people who wanted to get past me. Its a strange experience to be slower than others; I felt displaced and disgarded. This was my first awareness of discrimination by able bodied people with elderly, sick, and otherwise physically challenged individuals. I was angry, but it sensitized me, too. A constant physical reminder that I was different
was tough to ignore.
I was poolside within a week after the prescription was written. I had requested cold water so my P.T. met me at the "lap pool"; the water there was 82 degrees. The other pool area ran 85 to 87 degrees. My first session, I was so intent on exercising, I did not notice water temperature. I had learned water warm ups. walking, biking, stretches, but couldn't balance on one leg. He told me that my ankles had begun to atrophy, that I was in negative numbers when he first assessed me.
By the second session, I was shivering in the lap pool where my muscles had tightened in the cold water. I asked if I could use the heated pool, which was still cool enough to work in. Heat intolerance is an intolerance of extremes; hot and cold. This second pool helped relax my muscles and not fight the water. The temperature permitted me to allow the water to support me. I was gaining confidence as I progressed. Before I left, I could walk down steps without a cane over holding onto the railing. For the first time since my limitations became evident, I was working with what I did have. What a feeling of empowerment. I loved the water therapy, it was allowing me to begin to trust my body again.
Because my ankles were my weakest area, we worked to build strength and balance in my legs. My deep water routine was a repetition of three exercises,"scissors", spreading out arms and legs wide and the closing them, like a pair of scissors,"stabbing" or alternating legs kicked down toward the pool bottom, and "cross country skiing" an aerobic leg exercise shifting forward and back in a configuration like a cross country skier. I would use the floatation "noodle", a piece of long, buoyant foam, to keep me afloat.
The Olympic size pool throughout P.T. had been been ideal. A 92 degree pool was available for P.T. aftercare, but the temperature was wrong for me. My P. T. advised me to check out hotel swimming pools (which I did) and continued to search for gyms, health clubs, until I finally found one where I could pay per session. If you remember there are others, you will eventually find the lead that directs you to the right place at the right price. Disabled individuals do not have $600 a year to spend on health club membership. We do, however, deserve a means to exercise that is affordable.
The best thing this illness has given me is time. Time to create, enjoy, share times in our marriage when both of us feel good, to pace ourselves and to play. When I look at my diagnosis this way, M.S. has been a small price to pay.
There were quite a few well meaning people who told me how great I looked. What they didn't see was that I spent weekends and weeknights resting. That I no longer had the stamina to visit friends. That my stree tolerance has sharply declined. Suddenly, M.S. required that I more stringently prioritize and pay attention to my instincts regarding available energy.