The Wheelchair Fashionista!

Prior to the wheelchair journey I had been on a weight loss journey for a little over a year.  I am happy to report that I shed in excess of 75lbs prior to the wheelchair and continue to achieve small successes in this area.  As you can imagine I have thought several times over how grateful I am that I lost that weight before I had to wheel it all around.

I had in fact just achieved a great milestone, a weight I have not seen since my mid-twenties.  The ability to buy off the rack, have three times the stock available to me in my size and soon a long lost love for fashion began to resurface.  A long time ago I was a tall slender body that could wear anything well.  For a short time I mixed it up and shopped the thrift stores, making my own new looks, even did a little modeling.  Then school, work, husband, kids, basically life happened and I lost time and interest in fashion.  I became a sweats and T-shirt type of gal, one who was slowly packing on the pounds.

Once the accident happened it appeared as though any aspirations toward weight loss were shattered.  This, coupled with my inability to mobilize for a few years, resulted in additional weight gain.  I found myself more than 100 lbs overweight, literally broken, I had resigned myself to the fact that there was nothing I could do to change.  I lived this life for too long, and then one day something just clicked.  I struggle to find the words to better express what happened.  The best I can do is to say that it was as if a thick fog suddenly cleared. 

Amazonite Cluster

My reaction to this moment was a profound realization of the obvious.  It might take me longer, but obviously there was something I could do about my situation.  I may never be red carpet material, but I can do a hell of a lot better than this!  Yes it did feel like forever, but in retrospect I spent five times as much of my life feeling bad about it and doing nothing.  I enjoyed that control and relished its glory; in theory I could go out and buy up all kinds of fun clothes.  I say in theory because who the hell could afford to do that in reality.  I did, however, find myself buying fashion magazines again and exploring a few thrift stores. 

Fancy Garnet 

I was just getting into it when the chair happened.   Do you have any idea how hard it is to look cool when you are sporting a wheelchair from the 1950s!

Now I am no longer “a tall drink of water,” as Kay Flynn used to say.  I am a sitting all the time person who can no longer handle a pant with a button.  I am not talking about the jeans I need to lay on the bed to zipper either; any pair of pants with a button is out.  This brought me right back to the days of sweats and yoga pants right away.

That being said, I have attended a few parties and events since being in the chair and began to experiment with the clothes I had, along with some accessories and gave it a go.  The last event I attended was particularly important, as it was a fundraiser and a few of my jewelry designs were being raffled off, therefore I felt a sense of pressure to appear fashionable.  Luckily, I have a sister who works for Levi and it is her job, and her passion, to know fashion.  With her advice and a few good fashion magazines I was able to construct a reasonably relevant and interesting look. 

This little fashion success has ignited that old passion and I find myself daydreaming about ways I can alter certain items, make them more flattering and not have to choose between high fashion and sweats.  I can live somewhere in the middle, somewhere that exists in the real world not in a twenty-something’s vision of herself and her fashion.  I have to ditch the overwhelming accessory; the 1950’s chair just has to go!  

~Any day now my new wheels will arrive and my new fashion statement will be, everything goes with candy-apple red and golden flames.

    

Just Roll With It

Just Roll With It

What do you do when a key player in your recovery needs to move on and leave your team?  That is the question I face today.

In my years working as a treatment team member for the clients I served this was a fairly common occurrence.  People in the field of community mental health services do not typically stay in one position for very long, many get promoted or move on when they finish their educations.  Although it was frequent for us, we always made sure to mange the client’s loss as best we could.  Try to prepare them to accept this change and give them the tools they need to adapt.  Of course not every transition was smooth because this is real life and given all the variables not every theory will work in practice, but we did the best we could.

Today I learned that one of the most significant players on my treatment team has left.  That is correct left, as in past tense.  Whoa, curveball.

I had used my knowledge of treatment teams to establish the perfect team of players.  I took my time and put in a lot of thought when putting my team together and carefully chose service locations and affiliations to customize my team.  When given the option I would choose the best player on each servicing team.  This particular member was handpicked and loosing him will have a significant impact on my team.

 This brings us back to the question of what to do about it.  My first reaction was fear of failure, on my part.  That without this perfect team I assembled I would not be capable of succeeding with my recovery.  After the panic subsided, I realized this was just life and all those unforeseen variables that go along with it.  I have no control over this, which brought me to another of my favorite tools, the Serenity Prayer.

Recalling this made me bust out into a laugh as I had a flash of the time I used this technique just prior to an inspection at the site of my very first managerial position in a group home, as they called them then.  I was so green!  I was practically running up and down the halls rechecking everything just before they were scheduled to arrive.  I was reciting the Serenity Prayer in my head as I checked bedrooms, or so I thought.  You would not believe some of the things you can find in a resident’s bedroom just prior to an inspection, especially if they do not like you or are currently annoyed with you.  I fly up the stairs to check the second floor bedrooms, still reciting the Serenity Prayer.  I hustle down the hall and as I turned to come back I saw one of the residents looking at me with a very strange expression.  “Are you okay?  You have been running up and down the halls chanting, do you have a PRN?”

For those of you who do not know, PRN stands for “as needed” in the medication world.  Many residents had PRN medication for an increase in symptoms, to help manage them beyond their regular dosages. 

That put things in perspective then, and again just now.

~ Just roll with it.

Setting Limits: You Can’t Make Everyone Happy and You Shouldn’t Try

Setting limits is a lesson I am still learning, I am not quite proficient yet.  I have found this is a skill that requires a great deal of real life experience in order to acquire the knowledge needed, and the confidence to use it. 

I have observed many other who do posses this skill, I studied their behaviors so as I could imitate them later myself.  You see I was a supervisor, and being able to set limits was essential when working with staff.  I had many great skills as a manager, but setting limits was not one of them.  Those who had been around awhile could smell the blood in the water and I was tested to my limits.  I found that I was covering direct-care shifts so staff could take days off, doing an overnight because a staff member had a child to care for which I later learned did not exist, and I had more sick calls than any other manager.  Therefore, if I did not have this skill of setting limits I would have to rely on my old standby technique for life, “fake it ‘til you make it” and thus the careful observation of those possessing this talent.  I can pretend like the best of them, but in truth it takes a great deal of energy to pull it off. 

For myself, the real struggle comes from wanting to help and wanting to please people.  Intellectually I can acknowledge that the inability to set limits helps no one.  In order for any relationship to work, be it professional or personal, we all have limits and they will be tested.  Yet, in practice I find it extremely difficult.  A wise woman once told me, “There are those who respond with their brains and those who respond with their hearts, Honey you are the latter.”

I thought about this statement for some time now and have contemplated if this was a good thing or a bad thing.  I guess a balance of the two is ideal, but I could never be the former, I have tried.  Which would explain why my transition to education and training in the field was so positive, I was able to engage in all of the aspects of being a supervisor just short of having to give corrective action.  It was perfect.

Truth is this did me no favors in real life, because I still needed to learn this skill.  I came to realize, with some coaching, that it truly is easier to say no than deal with the ramifications of not doing so.  For example, if someone were to drop his or her child off at my home without prior knowledge and just drove away, I would not call them out on this behavior.  Really?  Yes this really happened, not one of my best moments in retrospect.  I called on another of my favorite reality-checking exercises, if this were one of your clients what would you say?  This is where I question how hard would I advocate for a client in this situation and what recommendations would I offer.  I then go through the process and eventually decide that I will do equal for myself as I would for those I serve in the community.

The answer was obvious when I considered it under these circumstances.  The next question was how do you establish limits with someone who has bowled over you for years?  Clearly and bluntly appears to be the shortest distance between to points, however, do I have what it takes…and then it hit me, I am spending way too much thought and energy on someone for whom I have little respect.  I needed to show some self-respect, bang it was clear as day.

Then feeling sheepish for my lack of self-respect, I examined those around me and found I am not the only one who suffers from this flaw.  I see it clearly now, those who take and those who give too much of themselves to keep the balance. 

Unfortunately, the takers of the world can spin us off track and we end up spending our energies in the wrong places.  We all know these people but just to be clear, I am a huge supporter of the “it takes a village” motto and believe we all need to work together for better communities.  Those I am referring to are the people in our lives who create chaos, don’t play by the rules, and test our patience on a regular basis.

Some examples:

•             The individual who charges you full rate on babysitting when you needed it, but a few years later does not pay you for babysitting when they need it.
•        The individual who says yes they will gladly take your client list so you can leave the country, but then a few years later offers you their client list for the same reason for the rate of ten thousand dollars. 
•        The individual who accepts drink after drink, but never buys a round.
•        The individual who says they don’t smoke but what they really mean is they don’t buy smokes.
•        The person who complains that their life is awful, needs your help constantly but wont do anything to change their circumstances when they are given the opportunity, yet continue to depend on you to make their lives function.
•        Or my favorite, the individual who only calls you when they need something. 

So how do we incorporate these people into our lives, or do we?  If you reflect on it and realize that this individual just is not worth your time nor your energy and feel comfortable letting them go, by all means do it.  However, in many cases we need to continue the relationship for various reasons (i.e., you are related, you love the individual, it is professional, etc.).  In this case we can exercise some control and manage these relationships without hurting ourselves.  The only way to do that is by setting limits and being consistent.

Only you can judge where the limit stands but here are a few simple guidelines.

1.              Protect your space.  Personal space is essential to feeling in control; your home is your space.  Unless otherwise instructed all individuals should knock before entering your home and should never find themselves in your bedroom, unless invited of course.
2.             Share only what you want known.  In this day of facebook, twitter, cell phones, etc., it can be difficult to maintain privacy.  So if you don’t want a surprise visit don’t tell the world where you are. 
3.       When your response is no, say NO!  Don’t set yourself up to fail and take on more than you can handle.  Eventually your house of cards will fall and no one will benefit, especially you.  There is no feeling worse than trying to be helpful to then only make more problems because you could not follow through, even the feeling when you say the word no.

Snap Out of It!

There are times when we need a reality check; when we get too involved in ourselves and lose perspective on life.  There is a clinical term used when working with the mentally ill that is actually called Reality Checking.  Sometimes we can get so wrapped up in our problems that our brains can become a feeding ground for internal chaos.  When lost in this internal chaos, a slight detachment from reality does occur and prompting from someone in your life may be necessary to point this out.   However, stay away from the stereotypical slap across the face move for this is not actually helpful.

Ways to detect that you have experienced a split from reality:

• ü  You in fact think that you are the most important thing in the world and without you life would cease to exist.  (i.e., You arrive at appointments when you get there, not when you are supposed to or when you are scheduled to get there.)
• ü  You no longer think that rules apply to you because of your circumstances.  (i.e.,You are in a hurry for the train so you don't wait for the light and dart into traffic causing others to make accommodations to avoid hitting you.)
• ü  You lack the insight to see that others around you are suffering too; the drama queen. (i.e., You may have totally valid issues in your life, but don't make issues where there aren't any.)
• ü  You think that the rules of life should change because of your circumstances. (Closer to home, i.e., thinking you shouldn’t have to pay your bill because it is the same company for whom you have intense feelings of contempt because they took...)
• ü  Or my favorite, nothing moves until you do.  (i.e., you can stop in the middle of the street and let your friend catch up and get in the car while me and all the others cars pile up behind you because, well, we can just wait.)

If you think you might need a reality check, or someone in your life thinks you do, visit Children’s Hospital in Boston.  There is always someone who has it worse than you and we must be humbled by the magnanimous strength of those who handle life with such grace.  If a six-year-old child can accept they are going to die, than we should be able to just suck it up and be grateful for the life we have.

This is not always easy; in fact it can be quite difficult to change your perspective so colossally.  In order to think of others we must be able to first understand that we have more than we think we do and second that we are not only here on this planet for ourselves but also to honor and celebrate the lives of others, and three that we have control over many aspects of life.

My favorite technique for identifying what to be grateful for involves a humbling moment, such as the above mentioned visit to Children's, followed by creating a list of all the things that are good in my life.  When I look at the list I realize I am very well off in the love department, three great healthy men, one fantastic guard dog, and we have everything we need to be happy. 

In spite of the latter, I often find myself in a mode of anger, resentment and experiencing every human's worst enemy, self-pity.   The key is to take note of others perceptions of your behavior, statements, and emotions.  Most likely you will not have to solicit this feedback, typically others are offering their observations independently.  An important aspect of this process is to be open to receiving others perspectives of ourselves. 

Several times in my own journey, I have become defensive quickly and required some time alone to process the feedback I was given.  This allowed me to open up enough to examine the statements regarding my behavior, emotions, dispositions, etc., it is through this examination and attempting to see my actions through another’s eyes that allows me to transpose my perspective. 

It is natural to get over-involved in ourselves; we fail to see beyond our own little world.  I know how easy this is with kids, homework, sports, activities, dinner, laundry, work, and the million other things we do each week.  However, I challenge you to think of others after this posting and do one nice thing for someone else just to add a little positivity to the world.  Make someone laugh, allow a car to enter the lane ahead of you at the merge, resist yelling at the “stupid driver” in front of you, smile and say hello to someone who looks unhappy, call a friend to say thanks for everything you do, call your Mom and say I love you, hold the door for someone, whatever it is just take the control to make a difference for someone other than yourself.

~Moonstruck (1987) "Snap out of it!"

Bargaining: An Interesting State of Being

Typically bargaining involves an individual learning to accept that they are going to die and they simply want more time.  We have all seen this clear, black and white, version of bargaining in the movies.  For example the man in the water with sharks swarming around,  “God, if you let me survive I will….”

I have found myself saying things like, God I will accept this if…  As if I have any control of the circumstances, as if I will refuse to accept it otherwise, or something like, all right I will deal with this but not one more thing, I just can’t do it! 

I believe bargaining is a personal journey, one that involves deep thought and reflection of life.  It is a time where you are just starting to grapple with the idea that the circumstances are in fact reality.

I am learning bit by bit how to accept and through the use of bargaining it implies that I have some control over the situation.  When you have no control over your own body it can create real control issues for sure.  I believe the concept of bargaining, with whom ever, allows me a small sense of control over the situation.

This was a quick yet very introspective stage for me and I have spent little time actually bargaining.  Instead I spent more time examining my life and going through the process of discovery within myself.  For example, what really matters in my life and can I still be happy under these circumstances of my life.  The obvious, thoughts of can I live this way and how.  I made lists of what made my life worth living under these circumstances.  What I learned was little changed in my life due to having to live it in a wheelchair.

I then made list of barriers.  I smile as I type this because that was the office motto, “eliminating barriers” and I always resort back to my experience working with the mentally ill.  My list of barriers although long, was not unreasonable and several would be easy to address.  This led to a list of problem-solving ideas, which led to a list of jobs for my husband and his brothers to address.  Slowly as my house becomes adapted, life gets easier and routines develop.  I have to say I am still thankful for limitless hot water because that routine is still a long process.

Ironically, I had always underestimated this stage, bargaining, in the grief/loss process.  Now I know that as ridiculous as it is to negotiate reality, it does get the job done.

Here are some of my favorite journal entries regarding bargaining:

¨     I will live in this chair if my kids never have to experience such a thing ever.

¨     Okay, I will do this but you need to promise I won’t have to deal with anything else this difficult.

¨     I will give up my legs if you can fix the nerves so prosthetics will work.  *Overlooking the obvious, if the nerves were fixed my own legs would work.

¨     And my favorite, OK GOD! ARE YOU LISTENING BECAUSE I AM PISSED! I NEED YOU TO FIX THIS BECAUSE I AM NOT DOING THIS ANYMORE!

Needless to say none of the above were logical, realistic or maybe even sane, however, they somehow made me feel better. 

I have of course made my apologies; don’t relish the thought of possibly making the Big Guy mad. 

Accessibility: Is Quincy disabled-friendly?

Quincy is an old and historic city located just south of Boston and has been home for the majority of my life.  I was raised here, went to school here, and thought I knew this city well.  It was not until I was sentenced to the chair that I noticed how incredibly inaccessible Quincy is as a whole.  There are several small business owners who have taken the steps to ensure that their establishments are accessible to all residents.  Many of them have done so because of the Americans with Disabilities Act, ADA, standards requires certain measures be taken.

Who regulates these laws?  How many people really take note?  I must confess I did not take note prior to my condition worsening and requiring a wheelchair. 

I took it upon myself to do a little checking around the online law libraries, talk about access!  The result was a return trip to see my old friend from “A trip to the bank”, the bank manager.  First we drove by the bank and took pictures for documentation, a requirement in filing a claim.  I pulled up and told the boys to go over and take pictures of all the wall space around the entrance, documenting there are in fact no buttons.  Put together what else I would need to file a complaint under the ADA regulations and then I made a return trip to the bank.

I rolled up to the door.  There where two individuals, one man and one woman, standing by the entrance.  They looked familiar, former clients maybe, and each grabbed a door pleasantly and I was able to enter the bank with ease, however, not independently.

I rolled myself up to the main customer service; there he was standing behind the oversized work surface taking on the phone.  He was focused and did not notice me, or at least did a good job pretending he didn’t. After a moment or two I started scribbling on a bank appointment card.  I wrote, tell your boss ADA complaint in 30 days if the button is not installed. 

He hung up the phone just as I finished writing.  He looked down and he met my stare.  The sound that came from his mouth was something of a sigh but more like a Lamaze Breathing technique.  At this point I was sure I did not need to introduce myself, but did anyway to read his reaction.  As I introduced myself and began refreshing his memory of our previous interactions, he began nodding and looked to the ground.

I passed him my note and told him to tell his boss that the crazy lady in the wheelchair is not going away.  Tell him I have already taken the photos I need to file a formal complaint.  He appeared relieved; his shoulders relaxed a little, he took a deep breath and released it slowly and the furrowing on his forehead began to fade away.  He asked if I had a transaction to be completed.  I replied no and he said with a bit of a smile, “Then allow me to get the door for you.”  

The ADA makes accessing information, standards and resources exceptionally easy for individuals and businesses to reference.  The standards were revised and published in 2010, making the expectations of small business owners quite clear.  The standards are simple and easily translated into common language in order to ensure comprehension by all. 

Bewildered at the lack of access I have been encountering in the city, I decided to perform a little reconnaissance.   I drove through the city with my boys, the mission; detect wheelchair accessible buildings and those that are not.  We drove down main streets as well as through small neighborhoods collecting data along the way.  I then took to the sidewalks and conducted some field-testing.  I used handicapped parking spaces, rolled the sidewalks, utilized crosswalks, visits to historic structures, other existing buildings and new construction.  Field-testing was a bit scary; going over large deformities in the ground beneath me, attempting to navigate my chair in traffic in order to access the sidewalk and realizing I am the size of a child and those driving cannot see me!

The preliminary results reveal that genuine America exists in our great city; nearly every small business had accommodations, or made accommodations, to allow me full access to all they had to offer.  In many cases I received better service than I had anticipated.  For example, a visit to a local restaurant for a special birthday dinner was a wonderful experience.  The building was historic but had been modified with a perfectly designed ramp up into the receiving area.  Two staff members moved tables, made chairs disappear, and I had tremendous space in what seamed a small place.  We were not in the corner either; other couples having a nice dinner together flanked us as we had our moment.  It was one of the few times I felt just like everyone else again, it was as if my chair just disappeared.    

The unfortunate results contain anecdotal evidence that big businesses are ignoring the needs of the disabled here in Quincy.  I considered the financial burden of modifying existing structures, but the “little guy” seems to be meeting that financial obligation so this is a moot point.  Does this reflect a lack of client demand; the “big guys” can afford to lose the business of a few prospective clients?  Or is this perhaps the result of a dwindling customer satisfaction approach, the actual desire to make the consumer happy.

Not included in my current field-test findings, was a trip to Quincy City Hall just weeks before I was sentenced to the chair.  I was using a cane at the time and the handicapped entrance was farther away, therefore more walking which I was becoming increasingly bad at.  That door had a button to open it for an individual in a wheelchair but the front doors had to be opened manually.  As I was leaving City Hall I had a conversation with the Mayor.  I explained that the large glass doors where extremely difficult to open and stated that if a little old lady with a purse and a cane were to attempt opening the door it would be very difficult.  He looked me in and stated that they were planning on installing a button on that door already that they had considered this in the new plans, and he opened the door for me as I exited.  I have not revisited City Hall since so I do not know if the button has been installed on the front doors, however, I think I will add them to my list of follow-ups.                       

   

Depression: The Social Stigma

When I made the decision to chronicle my journey I also made myself a promise that I would be real.  Often I will put on a face for the crowd and allow everyone else the ease of all is well.  However, if I do not share the truth here what is the point of what I am doing?

That being said this is by far the most difficult topic for me to discuss.  The reason is that although I advocated as loud as I could for those with mental illness that we are all equal citizens and deserve human rights, I knew I was fighting an uphill battle.  As loud as I shouted my voice was always overshadowed by an unspoken acceptance that this equality is not a reality.  Individuals’ who suffer from mental illness are one of the most discriminated against classes in the United States.  The social stigma associated with mental illness is incredibly strong, cross-cultural and deep-rooted.  I honestly do not believe that I will live to see the day this injustice is resolved, but I retain hope that generations to follow will see this transformation.

Stigma, in this context, is defined as “a symbol of disgrace” (Webster 2012).  Some well-known historical examples of social stigma include mental illness, physical deformity/disability, and of course those associated with race, color, creed, religion, etc.

There are many reasons, too many to address here why this social stigma exists, but I have studied this at length.  In my trainings I would often emphasize to new staff that it is important that we all understand that mental illness is no different from a physical illness such as diabetes, yet we as a society do not view them in the same light.  That it is our job as advocates for the mentally ill to try and change this regrettable fact 

Through working in the mental health system for many years I learned a great deal about people in the field.  Some believe in a cause and commit all they have to it; these are the people who truly do not judge.  Then there are those who believe in the treatment of mental illness and the greater good, but somehow still see themselves as being different from those they serve.  It is the latter group that I am most aware of as I write today.

I feel confident stating that I was good at my job, whichever role it may have been, while working in the field of mental health.  Well, that is not totally true, when I was assigned Thanksgiving at my first group home, I could have poisoned them all.  I was twenty-three and had just moved out of my mother’s house less than a year prior, I was in way over my head.  Luckily, my first case management client, Mr. X, came to my rescue.  See, Mr. X was great in the kitchen, and he was nice enough to care about me so he helped me prepare Thanksgiving dinner for the home and I got to save face.  Incidentally, Mr. X also taught me how to utilize the mirrors when driving the big van, how to pump gas, and how to use the company credit card to pay for the gas!  Mind you, this is a man several people had dismissed over the years; he would talk to himself continuously and make repetitive arm movements and gesture, none of them obscene however.  That was unless you asked him a question, and then he would cease to self-talk and answer your question, even have a conversation, and then return to his internal conversation.

Throughout my career I always made note of the staff that came across as judgmental, it is amazing the amount of emotion and negativity that can come through in a staff member’s (including management) progress reports when reviewing clinical notes!

I would make a mental note and work with these individuals in a way that would promote objectivity and how significant a factor this is when working in the field of mental health in particular.  The point being I know how many individuals in society, even those within the mental health system, who, knowingly or not, are in fact judgmental when it comes to mental illness. 

Therefore, the hardest part of this whole process for me is the depression, experiencing these feelings that are also intertwined with beliefs that others would view me as being inadequate.  That admitting I am suffering from depression somehow discredits my education, work experience, skills and talents.  My close friends and I have an inside joke (well I guess not anymore) that I throw out as often as I can that I have a Master of Criminal Justice degree from Boston University.  We make fun of my pompous voice and tip-upped nose, and I always reply with if can’t use it I at least have to tell everyone I got it, the damn thing cost me a fortune! 

Truth is, I am always trying to validate myself; that although I carry a “label” I am still worthy of being heard and what I have to say is still valid.  Truth is it is probably more valid having been on both ends of the system.

Depression is so difficult to cope with not because of the overwhelming sadness, but instead because the shame.  I know from my years of experience in the field, an individual’s support network can be enormously significant in successful recovery and management of various types of mental illnesses.  Often times this was a difficult barrier to overcome for people, and many had only providers as support.  I had always attributed this in most part to the fact that many of these individuals had been alienated from their family and friends due to the symptoms of their respective illnesses, as well as, the social stigma associated with mental illness.

Today I have a new perspective.  Due to the shame, which correlates with the social stigma, I see the magnitude of the barrier toward establishing a network of supportive people.  We are afraid to admit we are having a problem with depression to the very people we should be counting on as our support network. 

How do we change this?  Like anything else I suppose, break the cycle of silence.

~Hello, my name is Johanna and I am struggling with depression.