An Outing A Day Keeps The Blues Away

I've felt a bit down this past week. It could just be normal, seasonal "blues"...but it's more likely a result of my recent concussion. Yep, some girls just have all the luck.

Last week I returned to my field placement after a small, but wonderful Thanksgiving break. I had a delicious meal with my family on Thursday and headed up to Rochester on Friday to see John's family. It was a long weekend full of food and family; I never wanted it to end. But on Monday morning I was actually excited to get back to work. I couldn't wait to see the kids and to hear about their holidays.

Every day at about 12:30pm the students in Miss Rachel's "morning class" take a seat on the blue rug. They're tired from a day full of playing and each one anxiously waits for their parents to trickle in. I sat down on the rug to help zip up some coats and before I knew it, there was a 4 year old girl charging toward me with arms wide open. What was meant to be a goodbye hug turned into a catastrophe, as my head slammed backwards into the corner of a bookshelf. Suddenly my vision was blurry and the pain was overwhelming. If I were a cartoon character, I'm pretty sure there would have been little birdies circling around my head.

My amazing supervisor brought me to an urgent care department where I quickly developed a fever. The fever stumped them, but I know my body all too well. My autoimmune conditions have taught me to both expect and fear any kind of fever, but I'm sure it was just my body responding to the shock. They called an ambulance to take me to the hospital where I stayed for the rest of the day. My amazing mom drove up to be with me and, since John was still in Rochester, she also spent the night to make sure I was safe.

Prior to this concussion, things were going very smoothly. I was happy and settling into a weekly routine, Most importantly, I finally had my health under control. Now I'm dealing with daily headaches and fatigue, as well as severe and sporadic migraines. Although things are slowly returning to normal, the whole event really threw me for a loop - both physically and emotionally. It's normal to feel "off" after a hit to the head (there's even something called post-concussive syndrome). I could feel myself slipping into sadness, and was determined to fight back against it. I had come too far to go down without a fight.

There are days when a trip to the grocery store or a walk down the street is as much as I can manage... and that's okay. Be it a stroll through a nearby park, a trip to the coffee shop, or a quick visit with a friend, I've found that leaving the house when I'm feeling down is essential. It's easy to stay put when you're feeling crumby or sad, especially with the winter months setting in. But if you're anything like me, it's best to keep moving. An outing a day can be life-changing, so fight back against those blues. You'll thank yourself for it later.

Love,

Maya

Happy Thanksgiving!!

I am infinitely thankful for my family, my friends and my incredible readers. I hope you all have a wonderful (and delicious) day with the ones you love.

HAPPY THANKSGIVING!

A Personal Essay About Disability Written By My Personal Hero

The word “disability” is a pretty effective one, as far as words go. It manages to convey both a technical definition (“lack of adequate power, strength, or physical or mental capacity; incapacity”) as well as a general sense of the lack of glamour or romanticism found in the world of disabilities. Additionally, and perhaps more to the point, it is a buzzkill. Frequently a conversation-stopper. Experience has often led me to wax philosophical about the reasons behind this sort of discomfort; for example, perhaps it is the fact that we tell children not to stare or ask questions that gives them a poor foundation for later on as “don’t stare” becomes “don’t look” which becomes “don’t see.” Maybe it’s because we as a society are preoccupied by both body image and quick fixes and disabilities are an affront to both. Or perhaps most likely of all it is because disabilities present a minority status that is more objectively negative than others – it is in many ways both an identity and a regrettable situation that people cannot be sure how to react to. Regardless of any or all of the reasons, it is an aspect of myself which I have frequently wanted to leave behind and dissociate from, but it’s still a constant and undeniable shaper of my life, relationships, and outlook. For better or worse, it’s with me all the time.

Maybe it would be best to start by describing exactly how it affects me physically. I have nemaline myopathy, a form of muscular dystrophy (which is actually a group of diseases, not a disease itself). It is a rare genetic disorder that affects the shape and distribution of protein in my muscle cells, making it more difficult for them to develop and grow. This results in significant weakness in my skeletal muscles: legs, arms, face, trunk and lungs, but not in smooth muscles such as in my eyes, heart and internal organs. Although in one sense the disorder has only one effect (muscle weakness), this in turn creates many others such as skeletal deformations like scoliosis, some looseness in my joints, difficulty in doing things such as walking, breathing and enunciating, decreased ability to fight off diseases, and difficulty putting on and maintaining weight. This last one might seem like a bonus to anybody who’s seen ten minutes of commercials in the last twenty years, but in this case I don’t think you could argue that I really got lucky. I have the same difficulty gaining weight that others have in losing it, and I think it probably invites similar insecurities, comments, and obsessions with calorie-content. The slowness with which I have to eat plus the intense effort it takes to move around means that I burn up calories much faster than I can replace them. Additionally my low muscle tone extenuates my thin appearance. 

Although it was apparently clear that there was something different about me when I was born, I wasn’t diagnosed until I was about eighteen months old. This was because nemaline myopathy is rare enough that it’s not on the standard gamut of tests. I sometimes wonder if finally figuring out what the deal was wasn’t just a little bit anticlimactic in some ways because once you know what it is, there isn’t much you can do about it. There’s no treatment or medicine or anything for it, just eating right (as well as often), exercising and trying not to get sick… probably the least exciting or original medical advice ever given. Still my mom (always my most active caretaker and advocate) took all the precautions she could think of, including signing me up for physical, occupational and speech therapies and biannual specialist doctor’s appointments just to keep an eye on things. 

Mary & her mom

As I got to be old enough to go to school, she had some more tough choices to make. She had to consider things like the stairs in my school and on the bus, the physical roughness, social insensitivity, and potential germy sickness of the other kids, the danger of the playground and gym class, the weight of doors, backpacks, and books, as well as the length of the school day and the understanding of teachers and strangers. I tell you all this to make it clear why she chose to have me attend school with a full-time one-on-one aide. This is a necessary explanation because for quite a while I was unwilling to make the concession that it was an indicated need, at least to start with. Not that I can truthfully say having an aide really bothered me at first. As a five-year-old I knew there was something different about me compared to other kids, but I didn’t think about it much more than that. I think one of the most interesting things about children in general is their acceptance of whatever their experience is as the definition of normal. I mean on some level I knew that other kids could do things I couldn’t and I could see that they didn’t have aides or anything, but I accepted that without too much question. It was what it was. 

But despite this, the feelings of being smothered, separated and uncomfortable because of the presence of the aide grew over the years and especially once I left elementary school for intermediary school (in my district this was grades 4-6). Maybe I should explain that a one-on-one aide is an adult hired by the school district to accompany the student everywhere on every school day. It gets old. This was true even when I had a good relationship with my aide, which I frequently did – I had the same aide from third to eighth grade; we became very close and still get together over breaks. I was always pretty clear that it was the general fact of the aide, and not the individual person, that drove me nuts. What an aide does depends on what the student needs, and in many ways, I didn’t need much. I never needed extra help with school work and have always had an aversion to situations in which I might get pummeled, such as crowds and dodge ball games. But the presence of an aide often made people think I needed more help than I did, like when some teachers assumed the aide helped me with my tests and homework.

As I got older and developed more of a social consciousness, I began to notice that other people, teachers and students alike, behaved differently around my aide. The aides were, after all, adults and therefore authorities. People would address questions and statements regarding me to my aide in front of me. Not “what’s your name?” but “what’s her name?” Substitute aides were the worst. For “confidentiality reasons” which I still don’t understand, the school district could or would not give substitute aides any information about me besides my name. They understandably had no idea what sort of disability I had and many assumed an intellectual or developmental one. When I was in middle school one who had made this mistake introduced herself by saying sweetly, with her hand comfortingly on my shoulder, “My name is Mrs. Feely, can you say ‘Mrs. Feely’?” We did not become friends. Others who better understood the situation were still worried about leaving me alone for any amount of time, including when either of us had to use the bathroom, because they were afraid that if something happened to me in that time they would lose their job or incur a lawsuit. This sort of thing, combined with teachers thinking I got help with my work, was the most frustrating thing of all for me. The best way I can think of to describe it was that I felt like it negated me in some way. I felt like I did not get credit for the things I could do, like my school work, handling a trip to the bathroom or five minutes alone, so sometimes I felt like less of a person.

But these were just the worst days and many positive things did come out of my years with aides. For example, I learned to view the small society of school in a critical way. By this I don’t mean judgmental, although I’m sure that was sometimes the case, but rather questioning: What did people think of me?  What made them think they knew anything about me? Were they right? Did I do the same thing to them? I couldn’t articulate all of these questions or their answers but they were the sort of considerations that came to build some of my world view. Looking back, it’s really not surprising that I became an anthropology major. Being somewhat socially separated from others but very interested in them enabled me to see both them and myself in a different way. I realized that if I assumed that people were judging me, I was actually judging them. I needed to cut people some slack and allow for the standard awkwardness and life complications experienced by everybody.  

I finally won my campaign to lose the aide in tenth grade, so my last two years of high school were a solo event. At first it was surprisingly nerve-wracking. I was jittery that first day of eleventh grade, the same way that I feel before a plane takes off: in theory I know that everything is fine and this is where I want to be but I can’t shake the feeling that this couldn’t possibly work. But it didn’t take me long to embrace my freedom. I was thrilled to have to ask for help when I needed it, instead of always having it there when I didn’t want it. I’m really glad I had these two years of independence, especially because I think otherwise the first day of college would have been literally overwhelming. Now I’m able to really appreciate my freedom without being too freaked out by it.

As much as I learned about the general concepts of identity and human interaction and the specifics of disability through my school experiences, I think I would still be lacking had I not attended summer camp. From the ages of seven to seventeen I went to the Muscular Dystrophy Association (MDA) Summer Camp for a week out of every summer. Unlike the aide situation, which I was initially accepting of and grew to resent, I intensely did not want to go to MDA camp at first. I wanted to go to Girl Scout camp like my big sisters, even though I never especially liked being a Girl Scout. That wasn’t really the point. The point was I didn’t want to go to cripple camp where you sit around and talk about cripple things all day, I wanted to go to big girl camp where you… I was never really clear what you did there. All I knew was it was probably way cooler than MDA camp. I just couldn’t believe that something could be both fun and disability-related. Fortunately I lost that argument (which I know is hard to believe with my intractable logic). 

Me & Mary getting
ready to zip line!
MDA camp, 2008

What I found there, the first year and every year after, was a broad range of people that I would otherwise never have had the privilege to meet. I found people who handled their disabilities with such grace that you could never say they were impaired. This was the case with my friend Maya who was a counselor at camp and now one of my best friends. She does not have MD but rather a rare form of arthritis that frequently causes her intense pain as well as a host of other complications. Even so she meets every day and every person with liveliness and warmth, not just in spite of her pain, but even because of it. I don’t think most people would blame her if she were bitter and resentful, but she holds herself to a higher standard and instead finds in her pain a source of compassion for other people. She literally inspires me to try to be a better person. 

Me & Mary at
MDA camp, 2003

Meeting people such as Maya has also helped me keep my own problems in perspective. I met people with other forms of MD who could not walk, feed themselves, breathe independently or move their arms. Every year, MDA camp offered me a whole new context through which to view my situation. Instead of the deficit model I often encountered at school, where the focus was frequently on what I could not do, camp was a different playing field altogether. Since everybody there had disabilities, it was like they canceled out and we could all just be people. I realized that I was not a victim, and in some ways neither were people with more severe disabilities. Especially not when they have such strong minds, hearts, and personalities. 

On the flip side, I also met people who I did not think handled their disabilities as well. There were some who used it as an excuse not to engage in life, limiting themselves more than anybody else could have. Some seemed to consistently view all their problems as stemming from their disability, and to firmly believe that if only they could walk, or walk faster, everything would be better and they would be happier and more complete people. Yet how often do we meet people who are unhappy, dissatisfied or frustrated, even with their own bodies, despite their miraculous ability to walk? Clearly this, or any other “quick or easy” fix, is not the answer. I came to realize there are not so much disability problems and able-bodied problems, just human problems, experienced in different conditions and to different degrees by everybody. In other words, there really isn’t much difference between me lamenting my inability to jump or a friend lamenting her inability to look like Catherine Zeta Jones. Both are virtually unattainable and, even if attained, largely unhelpful. 

It’s impossible to know how my life would be different had I been born in a different body, but I think that being in this one has enabled me to meet people and learn things I might not otherwise have encountered. Although it’s easy to say this, and difficult to live it and appreciate it every day, I know that I have plenty to be grateful for. But this is not a Lifetime movie. Having a disability is not like overcoming an obstacle and moving on, it’s something that must be met and dealt with everyday. Yet even so, I think the experiences I’ve had and the people I’ve met have made it possible for me to make some progress in how I deal with it. It is a part of me but not the sum total and focus of my life.

Is it clear yet why Mary is my hero? If not, you can take a look at her spotlight from last year...


Love,
Maya

Yes, I'm Still Alive (And Loving My Internship)

To my wonderful readers,

Yes, I'm still alive! I apologize for my absence, but my final year of graduate school has really taken off and free time is a thing of the past. Not only am I taking intense classes, but I'm also working in a field placement at Family Services of Westchester (FSW), a large mental health organization. FSW runs 55 programs and serves about 30,000 individuals annually (including children, teenagers, adults, couples, and families) throughout Westchester county. 

I can honestly say I'm loving this internship! Everyone has been so wonderful and welcoming, especially my supervisor. I've been working at "Head Start", a federal program designed to give children (ages 3-5) from low-income families a positive beginning to their education. More than that, we aim to impact every aspect of a child's life, providing mental health services, nutritional counseling, parenting skills classes, etc. At Head Start, parents are treated as partners in their child's education and are included every step of the way. 

I spend the majority of my time split between various Head Start classrooms. I consult with teachers and families about specific students who might be exhibiting problem behaviors (aggression, constant tearfulness, isolation, etc). I've already had the unique opportunity to utilize play therapy, art therapy, and movement therapy with many of these children. It has given me incredible insight into their little worlds. 

I'm now also working as a clinical therapist in one of FSW's outpatient mental health clinics. I've been assigned my own cases, and it's incredibly exciting! Naturally I question my skills and wonder if I'll make a difference, but everyone does (even professionals who have been in the field for decades). It's amazing to finally use what I've been learning these past several years to help people. I guess I'm really becoming a social worker, huh? 

Love,

Maya

A Candid & Moving Guest Post: Caring For A Loved One With Chronic Illness

CARING FOR A LOVED ONE 
WITH CHRONIC ILLNESS

Maya has asked me to write this post based on my experience caring for my husband Bernie who passed away at age 58 in February, 2007.  Bernie was diagnosed with secondary progressive multiple sclerosis in 1999.  Multiple sclerosis  (MS) is a progressive disease of the central nervous system that is sometimes called “the mystery disease” because there is no known cause. It is not even known if MS is one disease or several different diseases, but it is classified as an autoimmune disease.  What is known is that the myelin sheath that surrounds the nerves is damaged.  As the disease progresses, so does disability.

Although I suspected something was wrong at least a year before Bernie decided to seek medical attention, he was in denial of many of the symptoms which were already apparent to me.  The most obvious symptom was his frequent loss of balance that he would attribute to a “bum knee”.

When a family member is living with a chronic illness it impacts everyone in the family.  This impact can be minimal or severe and everything in between. It can be emotional, financial, social and physical.  These factors are different for every family member.  For me the most difficult thing was watching this disease take everything from my husband.  It totally stripped him of all quality of life and, at the end, he could not even voluntarily move a muscle below the neck.  It was an eight year spiral toward total disability and death; it was very hard to watch.

Shortly after Bernie was diagnosed, I joined a group for family members of newly diagnosed patients run by the National MS Society. I suggested to Bernie that he join a group for newly diagnosed patients, but he refused. He felt that “groups or therapy” were not for him. I didn't push this because he was not someone who could be convinced to do something he didn't want to do.  Interestingly, when I came home after the first meeting he wanted to know what I talked about.  I told him it was all about me and that if he had any curiosity about what a support group does he should try one.  He never brought it up again.  A few months later I joined another support group run by the MS Society which I am still involved with.  This group, as well as my daughters and close friends, helped me through very trying times.  Without these supports I’m not sure I would have come through so well.  Honestly, although support from family and friends is profoundly important, I still felt that no one outside of the support group truly comprehended the stresses in my life. I often say “my support group saved my life.”  

Depression, sadness, and anxiety also impacted my life. I didn't realize it until I was watching TV one evening. I knew it was something I would have normally found hilarious, but I didn't laugh, chuckle or even smile.  The next day I called my doctor, made an appointment, and immediately started taking an antidepressant.  A month later I definitely started feeling like myself again.  Just like the commercial, I felt as if the dark cloud that was hanging over my head moved away.  There were still times that it was just so heartbreaking and overwhelming that I would have a good cry.  However, I didn’t have that constant lump in my throat and after I let it out I would feel better. 

When Bernie was healthy he could be an angry person.  After he became ill I told him that if he was angry he would have to find some way to cope other than taking it out on me or I would leave him.  It was that simple for me.  I told him I had every intention of sticking with him no matter how bad things got because I loved him.  I told him he had the right to be angry, anxious, scared and frustrated. However, I wouldn't tolerate constant, consistent anger or emotional abuse.  Sometimes he would be nasty and when I had enough I just had to give him a look or a sharp comment about his behavior and I would walk away.  Shortly afterwards I would get an apology and it would be over.  People would ask me “aren’t you angry about this disease or what is happening?” My answer was always “no”.  I had tremendous sadness, but it did not make me angry.  I did get angry at people who treated Bernie badly and, unfortunately, that did happen. 

The social impact of chronic illness can be devastating for the patient as well as their family members.  Bernie had to retire in 2002. As his disease progressed, he began to cut himself off from the outside world.  As it became more difficult for him to walk, he was increasingly reluctant to leave the house.  He fought using a cane, then the walker, and finally a wheelchair.  I understood how hard this was for him, but it was also difficult for me.  When I had to get him somewhere and he wouldn’t use a wheelchair he would lean on me (he was 6’2” and I’m 5”5”).  When we went out to dinner with friends we always tried to go early before it got crowded and tried to get a table close to the entrance.  One evening we went out to a restaurant and he had trouble walking out. When we got home he told me he was “done”; that he would no longer go out anywhere - not to dinner, not to a movie, not to visit friends...nowhere. I was stunned.  I was also angry and informed him that I was not going to stop having a social life because he had made this decision.  


It was as if I had to lives - my life at home with Bernie and my other life without him.  I began going out without him, but still invited friends to our home. I would make dinner until he had difficulty using eating utensils.  Then he refused to eat with anyone other than with me or our daughters.  He withdrew even more and would just sit in front of the TV from the time he woke up until he went to sleep.  Bernie was a brilliant man who used to read the New York Times everyday and did the crossword puzzle in 10 minutes.  He had no cognitive problems, but as I said earlier, he did suffer from severe depression.

We were fortunate that Bernie’s disease did not have a huge financial impact on us.  We had excellent health coverage, good jobs, and good pensions.  We had always lived within our means and therefore had no debt.  However, people who are not as fortunate as we were can be devastated by the financial impact of illness.  I don’t know what we would have done if he had not been able to retire with a pension and social security disability.  When it became too hard for me to work and care for him I was also able to retire with a pension and retain our health insurance. 

I've been asked many times where I get my strength and I honestly don’t know.  It isn't from religion or faith, because I am not a believer.  It may be from my upbringing.  My parents and grandparents were all incredibly strong people.  My mother became disabled after suffering a cerebral aneurysm at age 48.  My father cared for her with love until she passed away at age 65.  I was very close to my dad; he was the best man I ever knew and a wonderful role model. 

When Bernie became totally dependent on me for everything it did change our relationship.  In some ways it actually improved our relationship because we both realized we had to be more sensitive to each other.  We did talk about this, and when either of us became frustrated, we learned to take a step back, take a deep breath and discus the issue before lashing out.  It wasn’t perfect, we both had our moments, but it worked.  We had dinner together almost every night, continued to enjoy each others company and were able to make each other laugh right up until the end.  Even though Bernie’s illness was very hard on me, I can look back on it now with no guilt and no regrets.  

Maya asked if there was one message I could send to all the medical professionals in the world, what would it be?  Please listen to you patients and their loved ones.  Don’t dismiss their needs especially when it is about their quality of life or physical pain.


Written by
Sue Diamond





I'm proud to say that Sue Diamond is part of my family and one of the strongest women I know. Sue, thank you for opening your heart to us and for having the courage to tell your story. Bernie was so lucky to have you.

All my love,

Maya