An Amazing Support Network

In the last forty-eight hours I have dealt with discrimination due to my hearing loss and service dog but that is not what I want to talk about.  In my frustration and hurt I posted to Facebook that I was angry and upset but left the reasons vague.  I needed an outlet without spewing the details.  I figured that a few people would see it and say to themselves “that’s a shame that Jackie’s feeling that way” and then move on.  I’ve been guilty of that on a few occasions; its the social media world we live in after all.

Instead, I was showered with love.  Close friends messaged me asking if everything was alright.  Friends who I never considered close until this incident messaged me as well.  They all began with “I hope everything is okay and I’m here if you need me”.  As I gave many of them the brief synopsis of what was happening all of them were by my side.  Some cursed the man with  me.  Others stated that they were shocked it had happened and tried to make me feel better, saying that it wasn’t worth my time if that’s how I was going to be treated.

As hurt as I still feel about the entire situation the light that came from it was my support network.  They always say that people need a good support network to navigate this life and mine proved itself.  It showed me the strength I have behind me as people in this world show their true colors.  I just hope they know that the support goes both ways, that I will be there for them anytime as they were there for me.

An Open Letter to Potential Employers

To the Director of Residence Life at [insert] College/University,

I have a passion for helping others and am looking for a position in student affairs in higher education.  I am a recent graduate with a BS in Elementary/Special Education and a minor in Drama.  I graduated magna cum laude and spent three years working in Residential Life on my campus (two years as an RA, one year in an advanced undergraduate position).  I developed a theater based peer education group on my campus that is educating the community on tough social issues such as sexual assault and partner violence.  This group has performed twice since its creation (for first year students and then Greek life) and has been asked to perform again for the entire university prior to spring fling 2015.

I have worked with individuals with disabilities for a large portion of my life.  This has taught me patience, problem solving skills and given me the ability to see the amazing potential every person has to excel.

My time in theater has taught me the importance of breaking down tasks and working thoroughly and quickly.  Additionally, I have learned how to manage and work with limited budgets to accomplish goals and have successful productions.  As it can often be with theater, I have also gained the ability to take things as they come and work on the fly when things don’t go as planned.

All of these skills could be seen as an asset to your school but I fear you will not hear them.  I fear that you will disregard me as strong candidate for the position I am applying the moment I walk in for an interview.  You will no longer remember my resume and the conversation we had but instead my service dog.

I understand the law perfectly well.  You cannot discriminate against me because of my service dog (furthermore referred to as Chantey) or my hearing loss.  You might say that Chantey is not the reason you turned me away; there was simply a more qualified candidate.  Maybe there was but we both know the truth.  We both know that Chantey likely played a critical role in your hiring decision.

You see the negative aspects of Chantey.  You wonder why I need a service dog for my hearing loss when my speech appears unaffected.  You worry that Chantey will be a distraction to others even though you comment that you completely forgot she was under the chair during the interview.  You wonder how Chantey would be able to stay up dealing with a situation overnight.  You wonder how I am going to move about the campus easily and quickly.  You wonder how I would be able to deal with an emergency situation with a dog by my side.

I wish you wouldn’t wonder.

I wish you would see me as a competent individual who would know whether or not I could do the job with my disability; if I didn’t think I could do the job I would not have applied for the position.  I wish you would not be afraid of asking me these wondering questions if you are really concerned about their answers.  I know the law says you can’t but if I say I am willing to answer any questions, take me up on my offer.  If it is something I’m uncomfortable answering or inappropriate I will tell you.

Finally, I wish you would see Chantey for all of the positive things she and I (as the team we are) can bring to the position.  Know that Chantey allows me to be sure that party down the hall is actually happening.  She is my security that I’ll wake up to the fire alarm, not only for my own safety but also so that I can do my job and ensure the safety of the rest of the building’s residents.  She’ll ensure that I wake up to the ringing duty phone, instead of potentially sleeping through it during a long night on call.  She makes me more approachable because there are only a few people who would not want to say hello to the dog by my side.  She can provide comfort to students and individuals in crisis by petting her (not something that she is fully trained to do but if the situation called for it, it can be utilized).

This list could go on.  All you need to do is look at the two of us as a capable team ready to thrive at your university.  Any struggle we run into can and will be overcome with your support and my perseverance.

I have never let my disability stop me from doing what I am passionate about and I hope you will not be the barrier that does.  Forget I have a service dog and only take into account my resume, my skills and our conversation.

I look forward to working with you in the future and please do not hesitate to ask me anything as I will likely be more than happy to give you a response.

Best Regards,

The Job Candidate with a Service Dog

Why I Don’t/Can’t Work

People often wonder why I don’t work, given my “good” health. I put that in quotation marks because compared to a “normal” person, my health is garbage. But compared to many other CF patients, my health is pretty damn good. For a 30-year-old CFer, I am definitely what you could call “healthy.” A lot of people see my lung function numbers and tend to give me funny looks when they hear I don’t work. Allow me to educate a bit.

Yes, I’m in good shape now. I am in good shape BECAUSE I have stopped trying to hold two jobs (counting school and my health). CF is often in itself a full time job. My body is constantly fighting the bacteria in my lungs. These are bacteria that most people breathe in and immediately breathe back out, no harm done. But because CF lungs are trash, we breathe that bacteria in, and it stays. It stays and it grows and it takes over. So yes, my body is quite literally constantly fighting. This is exhausting. I require more sleep than the average person. I am not being lazy. My body needs this excessive rest in order to recuperate. So I spend large chunks of my days sleeping, doing my physical therapy, doing yoga, doing my nebulized medications, cleaning all my equipment, and trying to get myself to eat. That’s quite difficult to do properly if I’m also trying to hold a “regular” job.

I was in graduate school from September 2009 until May 2010. In those nine months, I went on antibiotics three times for a total of 52 days. This was all while doing a 36-hour-a-week schedule (which still isn’t technically full time, I might point out). Those nine months also brought about the following:

  • My first hospitalization in five years
  • Two of those three rounds of IVs each started with a week of being inpatient
  • My first ever case of pneumonia
  • A three-day lung bleed (my longest bleed ever, usually they only last hours)

I graduated in May 2010, and even once that ended, I spent a long time trying to get my health back. In 2011, I was on antibiotics six times, for a total of 104 days. In 2012, I was on antibiotics five times, for a total of 91 days. In 2013, I was on antibiotics twice, for a total of 28 days. And in 2014, so far, I’ve been on antibiotics once, for 14 days. If you’ll notice, the number of days I spent on antibiotics relatively gradually decreased in the years following my busy schedule. In 2011, it was 104 days, and this year so far, it’s been 14. See how drastic of a change that is?  While I would enjoy being able to work, to me, having a job is not worth killing myself. That is why I do not work.

CF and Humor – a Joshland Podcast

Sometime in July, I was one of two guest speakers on a friend’s podcast. He has a podcast called Joshland Unfiltered, and it’s about various CF topics. This episode was about CF and using a sense of humor as a coping mechanism. At the end, Josh asked if we wanted to plug anything we wrote for, so of course I plugged our DD blog.   :)

If you are so inclined to listen, you can find the podcast using these two links:

  1. https://itunes.apple.com/us/podcast/joshland-unfiltered/id567358131?mt=2 on iTunes
  2. http://joshlandunfiltered.libsyn.com/ if you don’t have/like iTunesHumor podcast

One Night

I woke up this morning around 5:00 am. I got up to pee, got some juice, and then got back into bed. I couldn’t fall back asleep until 6:00 am. I was sitting straight up, propped up on pillows. I could not stop coughing. Sometimes just waking up gets me coughing, but more often than not, it’s standing up to walk anywhere that gets the coughing going. I always have a coughing attack first thing in the morning, but I try to avoid them when I’m planning on going back to sleep. This morning, I couldn’t avoid it. I simply had to pee. I was awake against my will for an hour. I used my little Albuterol inhaler. It doesn’t do much for me most of the time, as I’m on nebulized Albuterol and that’s much stronger. That being said, occasionally I will use the inhaler as a last resort in a “please please let this work” sort of way. It helped a bit, but as I stated, I was up for an hour. I just had to wait it out. Wait for the coughing to tire itself (and me) out, and taper off.

The funny thing is, this is unusual for me the past year and change. Since I started a new nebulized antibiotic, I’ve been pretty damn healthy. I’ve been able to sleep through most nights without a coughing interruption. I’ve been going very slowly and steadily downhill the last month or two. I go to CF clinic in a week and a half. I expect they’ll send me home on antibiotics, whether it be oral or IV (though orals are far less effective for me than they once were). Even more important to note, waking up once a night to cough for an hour is nothing for CF. It’s negligible. I’m still quite healthy for a CFer. It gets even more fun as CF progresses.

CF and Relationships Article

My clinic puts out a CF newsletter every once in a while and they like to include articles written by patients. I’ve just finished writing one that is due to the CF social worker no later than next week. This is the third I’ve written since I started a year and a half ago.

***

Relationships are always work. Add significant stress to the situation and they’re extra work. I think we can all agree that CF falls under the “significant stress” umbrella. CF tends to add complications to every stage of a relationship, just as it gets in the way of everything else. I am a straight female, so I will be writing this from that perspective. All readers are welcomed and encouraged to read while keeping their appropriate pronouns in mind.

Meeting someone new when you have CF presents a pile of questions. When do I tell him? What do I tell him? How much do I tell him? How will he react? Will he be grossed out or scared? Will he back off? Everyone has their own take on how to deal with introducing someone new to CF. I was literally a poster child for the Connecticut chapter of the CF Foundation (CFF) when I was a kid, so I’ve always been very open with it. Men I date have always been told straight off the bat that I have CF. I answer whatever questions they have as they come. That’s my method, but it’s not the method for everyone. I’m sure it’s scared some guys off before, but I can’t be bothered with those guys anyway.

Once you get into the swing of things with somebody, there are a whole bunch of new questions. How much do I include him in CF things? How much do I want him involved? How will he handle it when I go on IVs in his presence for the first time? How will he handle it when I go inpatient? Is he one of those people afraid of hospitals and he’ll all but refuse to visit? How will he handle the not-so-attractive parts of not just CF, but also of the side effects to such heavy medications? Much as in the beginning of a relationship, I tend to handle it very straightforwardly. My boyfriends have always been as involved as they want, though I do make sure to note that I’d like them included to some degree or another. The important ones have gone with me to clinic appointments, to meet my team, and to include themselves in the process. I find sometimes my doctors get a better idea of how I’m doing from the perspective of someone close to me rather than from within my own head. Often, they get the most well rounded information from a combination thereof. I have been lucky to date men who have not feared hospitals. No one particularly likes them of course, but my boyfriend Ryan has visited me in the hospital for as long as I can remember, back when we were “just” friends.

[This was a photo taken in the hospital in June 2011, before we were ever a couple. It is not included in the article, I am sharing it here because why not. Plus it's such an attractive picture of both of us.]

Me and Mini hospital 2011

Clearly, he visits now as well, when he’s within reach (he’s currently attending college six hours from home). I’ve also been fortunate enough to date men that aren’t particularly turned-off by very unattractive side effects. They get dealt with appropriately as far as my wellbeing goes, and otherwise ignored.

I cannot claim to be a relationship expert. Far from, in fact. That being said, I believe there are two main components to any healthy relationship, especially a relationship with additional stresses already built-in. The two components I refer to are honesty and open communication. You don’t need to tell a brand new date every detail about CF, but I would recommend not lying either. Take the questions as they pop up, answer them in appropriate detail when they’re asked, whatever amount of detail that may be at the given time. Discuss the subjects, even the difficult ones. Perhaps even especially the difficult ones. You may be resistant to it, your other half may be resistant to it, maybe both of you will resist. When difficult things occur, they need to be discussed, as tough as that may be. As a human, as a woman, as a CF patient, as a social worker, I have always found open communication goes a long way towards getting through anything intact. And yes, I can resolutely say that’s true even when dealing with something like CF.

I’m Not Blind…

This past Sunday my mother and I went to go see a show in Boston.  My mother had gotten me tickets for Christmas and I was very excited to see the show.  I have already brought Chantey to a Broadway show and everything ran smoothly so Boston would be a piece of cake.

We arrived at the theater thirty minutes before the show was going to start.  Enough time to get in and settled without having to wait too long.  Once our tickets were scanned I figured we would simply join the crowd in finding our seats.  Instead, one of the theater workers pulled us aside.  The gentleman passed me off to another woman who he said would help me out.  Okay, I thought, if this is their policy I’m not going to stop them.

The woman who I was handed off too then tried to grab my hand and lead me over to a table on the edge of the lobby.  I was so perplexed by this woman.  I didn’t want to hold her hand.  I’m 22 and I could see her just fine.  When I would try to gently separate our hands she continued trying to reach back for me.  Finally, I reluctantly let her have a finger.

Once we got to the table I could see a another woman with a seeing eye dog waiting for the crowd to clear so she could go to her seat.  The woman who worked at the theater asked me my name and then gave me a listening device on the table.  Normally, when I go to a show I don’t use the headsets they give out to people who are hard of hearing.  I feel like I don’t end up hearing the dialogue and lyrics at the same time as the actors are saying them, that it’s horribly dubbed basically.  I figured I would take it, place it in my bag and simply return it at the end of the night.

That’s when I noticed something.  There was a sign on the table that said audio described performance.  For those who do not know what this means, the headsets allow the listener to hear someone describe what is happening on stage in between the dialogue.  I shook my head figuring this table was for everything disability related.  I then turned to back to the woman who was telling me that they could get me a braille program if I needed it.  That’s when I realized the horrible assumption this woman had made.

She thought I was blind because she only saw the dog and nothing else.  She ignored the fact that Chantey’s vest clearly has Hearing Dog printed on it.  She ignored the fact that I had no problem following her when our hands were not connected.  She ignored

Chantey's vest that clearly states "Hearing Dog."

Chantey’s vest that clearly states “Hearing Dog.”

the fact that I had made clear eye contact with her many times.  This woman choose to only see my dog and, even though she could not legally ask what my disability was, not understand that there could be dogs for other disabilities.

At this moment, I politely informed her that I was not blind but instead had a hearing loss.  I asked for clarification about the hearing device being for the blind and when my suspicions were confirmed I returned it to the table because I would most certainly not need it.  I told the woman that I didn’t need that kind of assistance.  She asked me what kind of assistance I did need then and I told her I didn’t need any.  That I only needed to go up to my seat with my mother.  I could tell that this threw off the woman but she simply nodded and had my mother and I follow her.  By the time we were on the ramp to our seats she finally regained enough composure to inform us about how long the first act would be and ask for my ticket to double check the seat.  Once we were seated I thanked her and she left.

Of all the assumptions I thought I would encounter about Chantey and I, blindness was not one I anticipated.  I suppose that it is a logical assumption since it was a special audio described performance that day but I would have figured that it was obvious that I was not blind.  Both the woman and I learned something that day though.  I learned that people will make assumptions about what my disability is despite clear clues because of Chantey.  And the woman learned that not all service dogs are for blind or visually impaired people.  I guess education will be the story of my life now, so that hopefully this won’t happen in the future.

Cystic Fibrosis Lifestyle Foundation

There’s an organization called the Cystic Fibrosis Lifestyle Foundation (CFLF). They award eligible CF patients grants up to $500 a year for things like gym memberships, dance classes, horseback riding lessons, etc. in order to keep active and healthy. I only just recently learned about this foundation at my last clinic visit. After having done yoga alone in my living room for the past year or two via youtube videos, I have applied for a grant to take yoga classes. I haven’t heard back yet, but I don’t see why they should deny me. The last page of the application was filled out by one of my doctors, and on the question “On a scale of 1-10, how compliant is this patient?” he answered with a 10. I found a cute little yoga studio nearby at which to take classes. Now I’m just waiting to hear from CFLF about my application. I’m really quite excited about this. Any CF patients that haven’t heard about this before, give the website a look! It doesn’t cost anything to apply, and they cover a variety of classes/lessons/activities.

Edited to add: I got the call this afternoon and my grant was approved. They’re calling the yoga studio to set up my payment for classes.

http://cflf.org/  CFLF

A Month of Pleasantries

The last month has been a crazy one filled with new experiences and understandings.  This personal growth kept me from posting however so I am excited to update and get back into posting regularly.

The greatest creature has come into my life and I don’t think I was prepared for how much she would effect my world.  I was paired with my hearing dog Chantey and went into training on Feb 24th.  Training was more of a boot camp that allowed me to learn about how to handle Chantey in public and how she responds to sounds for me.  It was a draining process in the fact that I had long days of intensive work, but it also was an amazing Chantey footexperience that allowed me to bond with Chantey faster than I would have thought possible.

The organization I received Chantey, NEADS, from uses the Massachusetts prisons to help train the dogs and on the last day of training I had the opportunity to meet the inmate who prepared Chantey for her life with me.  Walking into the medium security prison, I didn’t really know what to expect.  After moving through the trap successfully, Erin, my trainer, and I were brought to a conference room.  In that room sat all of the current inmate handlers and their dogs.  It was definitely intimidating but I was quickly welcomed and relaxed.  I met Pete and saw how he interacted with Chantey.  He loved her and she loved him.  However, they both understood that they didn’t belong together anymore, that Chantey belonged to me now.  For all Pete did though, I am forever in his debt.  He prepared an amazing dog for me and taught her all she needs to know.

Then came the scary part, leaving NEADS and going to my college campus and college life with this new being in tow.  There was definitely a transition period in which the two of us had to figure out a routine and learn each others cues.  I had to rearrange my college schedule to meet her dog schedule and needs.  As much as I hate to say it, she has made me a morning person.  We’ve also had moments where she tested me to see what she could get away with.  This has included trying to sleep with me on my bed instead of on her own bed at the end of my bed.

During my short time with Chantey I am continuously and happily surprised about how everyone accepts her.  I knew I had permission to have her on campus and in class with me but everyone has been very accepting. I haven’t had anybody on or off campus question her validity as a service dog.  People on campus will whisper about us as we walk by but no one has said anything outright rude to us.  I guess I had the assumption that by making my disability visible I would immediately face issues.  Because of this I am being pleasantly surprised that we are being accepted as openly as we are.

I look forward to sharing new experiences with Chantey and regards to my disability in the future. For now though, she’s allowing me to defy any restrictions presents to me due to my disability.

My Answer To…

…”I have no idea what to write about this month!”

This is the picture of my CF corner in the living room. I have meds and equipment elsewhere in the house (the kitchen and bathroom being worth noting), but this is where a large majority of my CF supplies reside. All my port supplies, needles and dressing kits, and my saline and heparin flushes. Also my nebbed meds (that don’t require refrigeration), and all my pill bottles. As well as my nebulizer and my vest. I spend hours a day in this corner of the living room. Welcome to my world.

CF Corner 3:13