Silhouette figures of a male and female with their legs crossed and their hands in front of their crotch as if they have to urinate.

My Drinking Problem

Because of the weakness caused by my neuromuscular disease, I have relied on other people to help me go to the bathroom for the past eleven years. Since 2007, I have timed my use of the toilet around when and where I will have proximity to an accessible toilet AND a Personal Assistant (PA), sister, cousin, friend, neighbor, or other kind person I could coerce ask to help me. I have restricted my fluid intake to coordinate, as best as I can estimate, with other people’s schedules and the times I will be near toilets I can safely use.

I wrote about my battle with “pee math” in this post. Since I have been so open about my methods over the years, I was surprised by the number of friends who did not know this was a routine for me. But, things are changing!

As you might remember, six weeks ago I had my suprapubic catheter tube (SP Tube) placed. According to the surgeon, the procedure “was textbook,” and went well. There were no complications from anesthesia. I remember being wheeled into the operating room with bright tropical fish painted on the walls. The breathing mask went over my face and the next thing I knew, I was waking up in the recovery room.

My SP Tube means I no longer need to sit on a toilet to urinate. Instead, urine freely flows out of the SP Tube to a collection bag. During the day, I wear a bag strapped to my leg. At night, I connect to a larger bag that hangs on the side of my bed.

I am now free to drink without the worry of how I will get on a toilet, or who will help me, or when it will happen. If I want to have an additional cup of coffee, I don’t have to think about where I will be in the afternoon and if I will have a PA with me to help me transfer on to the toilet. Now, I just drink the coffee! Or the juice. Or the water. Or the wine. Or whatever I want!

When I am at work, I can have as much water as I want! The first day I returned to work after surgery, I drank five, yes, FIVE, 16 ounce glasses of water. Granted, I had to dump my leg bag five times as a result. But I was not dehydrating myself because of lack of access to help and an accessible bathroom.

Drinking as much as I want, whenever I want, has created new challenges I have not had to face for several years. For the first time in a decade, I have to worry about accessible public restrooms.

I know – it sounds strange to hear a disabled woman admit she hasn’t worried about accessible public restrooms on a regular basis. I haven’t used them for a decade. Sure, I’ve always known it was an important issue. But, it wasn’t an issue for me so I spent my advocacy energy on other matters. At least, I did until the end of April.

Not all so-called “accessible” restrooms are actually usable. Disabled people know this but most non-disabled people do not. Most non-disabled people see grab bars next to a toilet and think the bathroom is accessible. Grab bars are not the only feature that make an “accessible” restroom usable. In addition to grab bars, accessible restrooms must minimally have:

  • Accessible sinks that can be operated with a closed fist (no faucet knobs that require grasping and turning)
  • Soap and paper towel dispensers and mirrors mounted at lower heights
  • Lever doorhandles or handles that can be operated with a closed fist
  • Doors that do not require more than 5 pounds of pull force pressure to open

The majority of bathroom doors open into the bathroom rather than out. This is probably so people walking in a hallway don’t get whacked by someone opening the bathroom door. While I understand that rationale, there are usually more people outside a bathroom than inside. If I can’t open a door because it requires more force than I can generate, I stand a greater chance of finding someone outside a bathroom to help me than I do inside the bathroom.

Since I had my SP Tube placed, I have been stuck inside six public restrooms because the door was too heavy for me to pull open. I now take my phone into the bathroom with me each and every time I go. If I am with a group of people, I ask them to come rescue me if I don’t return after five minutes in the bathroom. Last week I learned if there are multiple bathrooms, it is helpful to tell your colleagues which bathroom you are actually going to if you make this request. My friend Melissa dutifully came looking for me after I requested a rescue not knowing I was in the bathroom on the other side of the building. She sent me a text saying, You good? I just checked the bathroom and you are not there…

I am still learning how my body behaves with all of this extra fluid intake. There are still timing issues related to drinking, particularly when planning paratransit bus trips. It’s not fun to ride around on a bus for an hour with a leg bag that is full to the bursting point. Thankfully, I have not had any messes or spills.

Next week, I will return to the pool – the last step in resuming all of my activities. It will feel wonderful to return to the water, and I miss my swimming buddies.

Right now, I need to go grab a drink. I’m empty!

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Furrry, fuzzy baby penguin chick holding a bouquet of pink roses.

I’m Fine Without a Valentine

If you ask my closest friends, they will tell you I am a romantic. Of course, I will deny it at first, even though deep down I know it’s true.

I love love. I love doing nice things for those I love. I love giving unique gifts I know will be loved and appreciated by the recipient.

But I don’t love Valentine’s Day.

It’s not because I have spent the vast majority of Valentine’s Days without a romantic love. Granted, this will be the 24th Valentine’s Day since I was 18 years old and I have only had a romantic love for 4 of those days.

Yes, I love having a romantic partner when that is a part of my life. It is thrilling to have someone who honors your vulnerability and likes you anyway; someone who shares intimate secrets and sends your dopamine levels soaring with compliments and kisses.

However, my self-worth has never been tied to having a romantic relationship with a man. I have always been comfortable on my own, not really able to understand those people who felt like they needed someone to “complete them,” or make them “whole.”

Some of my friends tell me it’s just because I haven’t met my “soul mate,” the person I am “supposed to be with.” They tell me to just hang on and when the time is right, “Mr. Right will come along.” What if I’m alright without a Mr. Right?

My dislike of Valentine’s Day is not because I have not been exposed to extended romantic relationships. My parents celebrated their 63rd anniversary last July, six months prior to my father’s death in December. My grandparents, aunts and uncles, sisters and brothers-in-law, many friends – all examples of strong marriages and relationships I am blessed to witness.

I certainly don’t dislike Valentine’s Day because love is absent from my life. I am fortunate to have a wide circle of support, love and affection from a variety of friends and family. These connections are central to my feeling of well-being and happiness. They sustain me when times are challenging and help me celebrate the good.

Maybe my dislike of this day meant for lovers stems from the fact that even if I found romantic love and wanted to get married, marriage is not a realistic option for me due to my disability and my need for long term care. Like most people who receive home care for an extended length of time, I rely on Medicaid to pay for my Personal Assistants. Thanks to the New York Medicaid Buy-In Program for Working People with Disabilities (MBIWPD), I am allowed to work and earn more income than allowed in traditional Medicaid and still qualify for Medicaid coverage.

Medicaid eligibility can be complex, and is based on a number of variables such as income and resources. It also varies from state to state. As a single person without a disability or dependents, using 2015 income and resource levels found on the New York State Department of Health website, I would qualify for Medicaid as long as my income is less than $1,343 per month or $16,105 annually. As a person with a disability, I would qualify if my income was less than $825 per month, or $9,900 annually. However, as a single person receiving services through the MBIWPD in my state, I can earn up to approximately $60,000 annually (the exact amount changes each year) and remain eligible for Medicaid as long as I meet the asset limitations. I qualify if I am employed full or part time. I am eligible for insurance through my employer, so my traditional preventive healthcare is covered by that policy. Insurance does not pay for long term care though. Medicaid pays for the personal care I need to remain an active member in my community.

But if I marry? A married couple can only have a joint income of approximately $81,000 annually to qualify for services.

I am authorized to receive 70 hours of home care each week. If I were to pay out of pocket for this care, it would cost me approximately $20/hour. That is $1,400 each week, or $72,800 a year. Just for personal care. That is more than my current annual salary, since I cannot earn more than $60,000 and still qualify for home care.

I have always said I will never put myself in a situation where my safety and security are dependent on another person. Part of it is my own independent stubborn streak, and part of it comes from conditioning from my parents who told me repeatedly as I was growing up how important it is that I be able to take care of myself. If I were to marry, I would need to find another job with a higher salary to cover the cost of my care, never mind my living expenses.

Sure, I could find a job that pays more than $100,00/year. Those jobs exist. I have the degrees and skills to be successful at those jobs. But as much as I complain about playing the Medicaid game (proving my disability every six months, tolerating the home visits from nurses and social workers to assess my needs), I play it because I need to. I am dependent on these services to live independently in my community where I am loved and valued, and can give love to those who are important to me.

That’s the love that matters most to me.

However, if anyone has any leads on “Mr. Right,” I’m not opposed to having some fun… 😉

Why I Have Not Written About Japan

On July 26, a day when I should have been celebrating the anniversary of the Americans with Disabilities Act, I was attempting to process the news of an unimaginable hate crime. Instead of gathering with my disabled peers in joy, I was sobbing as I imagined what the victims had experienced during and after the massacre in Sagamihara, Japan.

You haven’t heard about the massacre? I would bet you aren’t the only one.

Around 2:20 AM, a former employee of a residential facility for the disabled in Sagamihara committed the largest mass killing in Japan since World War II. He broke into the building, tied up the staff members, and stabbed the disabled residents, killing 19 and injuring 26. The victims ranged in age from 18 to 70, both male and female. Most were stabbed in the neck. throat, and chest as they slept in their beds.

I waited for the “mainstream media” to cover the story. After all, hate crimes and terrorist acts have been receiving a great deal of attention. Nice, Brussels, Orlando, Paris, Munich – I’m guessing you recognize recent stories related to these places.

Instead, I read stories like this Japan Times article which described the crime as a “mercy killing.” According to the article, the killer believed he was providing mercy to the victims’ caregivers because “it would be better if the disabled disappeared.”

There was no mass outcry of horror and disbelief. There were no large expressions of sympathy and solidarity.

Then, slowly the messages began to come from the worldwide disability community as they wrote social media updates, blog posts and essays. Reading them, I was grateful for these brave writers who took the time to capture the loss, rage, sadness and fear so many of us felt. I was able to share their work when I lacked the energy and stamina to compose my own response to this terrible act.

I tried to write. I attempted to find words to express my emotional response. If ever there was a time when I needed to add my voice to help draw attention to an event, this was it. But whenever I tried, I got stuck in the same mental prison.

Those nameless victims? They were me. If I had been a resident in that facility, I would have been one of those who went to sleep one night in July only to have my throat slashed while trapped in my bed, unable to escape injury or death.

The victims’ only crime – my only crime? Being born disabled. Less than. A burden. Incompetent.

Murders of disabled people are incorrectly called “mercy killings” by media outlets because of the ableist belief that disabled lives are so invaluable or unbearable that our murders are acts of mercy. Don’t believe me? Remember Tania Clarence – the mother who killed her three disabled children and was only charged with manslaughter? I wrote about the case in this post. How about the mother who received a charge of involuntary manslaughter for VOLUNTARILY poisoning her disabled daughter and killing her? If the victims of these crimes had not been disabled, would the charges have been more severe?

Writing about the massacre has also been difficult because my own personal care situation has been strained for the past month. Last summer – almost exactly a year ago – I wrote about how life is different when personal needs are met. Just this past month, I have had two Personal Assistants (PAs) out of work for hospitalizations; one out due to a broken foot; one out due to complications with her pregnancy; and one out due to a family emergency. These are legitimate reasons to be absent from work. But my need to use the toilet, get dressed, eat, get in and out of bed, work, live – insert action of your choice here – does not stop just because I do not have my regular staff available to work for me. Yes, I have other staff but they are not always available to work at a moment’s notice. If it were not for the support and assistance from family and friends, I would have no choice but to rely on institutional care like my disabled peers in Japan.

Facing a crisis in personal care, knowing that I would be institutionalized without the generosity and kindness of a support network I have carefully cultivated, and reading about the murder of innocent disabled people in a setting where they should have been safe – well, writing has not been a priority in my life. It is a shame, because I need the therapeutic outlet of writing even more when I am stressed and emotional.

I really need to write. I am a writer – and writers need to write.

So, I set a goal to post something – anything – about Japan this weekend. I am not certain this post captures everything I want to say about it, but at this point it is the best I can do. To the friends and family who have reached out to me since the tragedy in late July, I appreciate your kind words. Thank you for sharing stories and for helping to call attention to this tragedy. We owe it to the victims to continue to fight against the stigma and negative attitudes towards the disability community. We must ensure all life is valued, so nobody has to fear that society views their life as a burden or expendable.

Because that disabled person trapped in an institutional bed? That person is not just me. It’s you.

Medical DeeScriptions

Today is Monday, January 25, 2016. Twenty-five days into a new year and my life has already had one year of action packed in. Here’s what is happening, and a brief glance at where 2016 will take DeeScribes.

I spent an enjoyable week at my sister Caroline’s house for Christmas/New Year vacation. It seems like years ago, not just three weeks. I played with puppies, crocheted projects, wrote, and visited with friends and family. It was a perfect week.

Just before leaving my sister’s house, I checked my bank account balance online. I planned to make a few returns and needed to check on my status. I discovered someone had written over $1000 of fraudulent checks.

The fraud caused me to take additional time off work to process the paperwork and fraud protection account changes. I have always had good relationships with my local police officers. Unfortunately, it is not the first time I have been the victim of theft.

At the end of the first week, I began to get sick. An ear and sinus infection kept me home for five days, coughing and congested. Of course, my wheelchair decided this would be a good time to die, so before I could go back to work Wednesday, January 13, I had to get my chair fixed.

With a working chair, I powered through 4 hours in the office before heading home. I am trying a new work schedule which permits me to work part of my day at home so I have access to an accessible rest room. Good thing, since that Wednesday my body decided to surprise me by starting my menstrual cycle. I know I don’t typically share this much personal detail here, but trust me – it’s relevant.

It’s relevant because it is why I used the bathroom with urgency on Wednesday afternoon. Or, at least, I tried to.

Instead, my leg gave out as my Personal Assistant was transferring me onto the commode. She didn’t listen to my commands, and she dropped me.

SNAP!

I heard it crack as my butt hit the floor. My left femur broke in two places.

Imagine the scene – me, half naked on the floor by the commode, bleeding profusely, knee blown the size of a basketball, a whimpering Personal Assistant trying too late to make things better, with the police officer who worked with me for five days to arrest the women who stole from me. Can you see me sobbing on the floor, in a puddle of blood, with the policeman rubbing hair out of my face while we wait for the ambulance? It wasn’t pretty.

It definitely wasn’t pretty as they moved me to a backboard and lifted me to a stretcher. It was downright ugly as I swore in pain while they secured me in the rig.

Competition at the operating rooms meant surgery did not happen until Friday. For 36 hours I lay in agony, anxiety about impending surgery coursing through me. The last time I had “routine” surgery in 2013, I spent four days on life-support in the Intensive Care Unit.

Thankfully, surgery happened on Friday. According to my surgeon, my leg is now held together with (his exact words) “plates, rods, some chicken wire and a little bubble gum.” I don’t know the exact ratio of those components. I’ll do some investigating.

For the past ten days I have slowly started the healing process. My body has been drastically changed and I don’t know what the end result will be. I don’t know where I will come out but I do know these things:

  1. Orthopedic surgery still hurts worse than any other pain I have ever felt. I forget sometimes, and then things happen to remind me.
  2. Friends and allies who speak up for you are worth their weight in gold. Once again, I was in a position to require others to have detailed conversations about my heath wishes. We have had these discussions amongst ourselves before, so when emergencies occur they know what I want. I am blessed to have Sandy, Sally, Stephanie and so many others to advocate for me when I am weak.
  3. Nurses and patient care technicians deserve to earn far more than they make. Especially the ones who answer your call bell at 2:30 AM because your eye is tearing and you can’t reach your face to itch it. And the ones who clean you up after your laxative decides to start working. And the ones who heat the soup your sister makes for you because nothing tastes good. And the ones who have to try to make you comfortable after your urinary tract infection causes you to void with urgency every half an hour. And the ones who listen to you and respect you as an expert on your body.
  4. Complementary medical treatments need to be funded and supported. The massage I received reduced my leg pain more effectively than the narcotics. And human touch is so essential for healing.

I am waiting to learn where I will go for rehabilitation. I will be non-weightbearing for at least five more weeks according to the doctors. The real work is just beginning. Transferring, driving, working, living arrangements – all of these unknown factors are still to be faced. This injury is a game-changer. There is no doubt about it.

But I am a tough cookie. And I have too many things to do. There are books to write, people to reach, hearts to touch. I am overwhelmed by the love and support given to me these past ten days. I am gathering such great fodder for future work! And I am witnessing countless acts of service and love which make me want to work harder.

To the nurses and doctors at St. Peter’s Hospital, especially McAuley 2, you are rock stars. It has been great to get to know you. I’m going to have fun writing about our times together!

I’ll blog as I am able. Letters and cards from friends have been positive and keep me focused. If you reach out to me and I don’t respond, please try again because I know I am not at 100%.

Thanks for reading, and for sending positive energy my way.

When Personal Needs Are Met

When I started this blog almost a year ago, I knew I would write about disability. I had no idea my posts about my reality would be eye-opening for so many readers. I appreciate those who have told me something I wrote caused them to think differently or observe something with new understanding. Today, I am taking a deep breath and sharing a lengthy post about recent events in my world – explaining why the past few months have been difficult. I tend not to share this part of my reality widely, so this is a big step for me. If you read the entire post and feel a need to comment, please be kind with your words.

My disability requires me to rely on others to help me perform everyday tasks. I use a consumer directed program for home care, rather than rely on an agency to staff my needs. This comes with the responsibility of recruiting, hiring, training, and managing my own staff. It is work, and I know I could give up that work and control to let an agency manage that part of my life for me. But I have yet to find an agency that can guarantee me coverage at the hours I need, for the shifts I require. Everyone I know who uses an agency has moments when they have to phone friends and family for back up assistance because an agency is unable to get staff to their house in a timely manner when someone has called out due to illness or emergency. Plus, I like the control of knowing who is coming into my house and when. How would you feel if a complete stranger walked into your home tomorrow morning to help you get out of bed and into the shower?

I have managed a team of Personal Assistants (PAs) for eight years and usually have 12-14 staff at any given time. Three are out of town PAs who are either in other locations I visit frequently or they only work with me when I travel. Five are my ‘regulars’ who are scheduled for various shifts throughout the week. The rest are back-ups, who get called upon to cover illness, vacations or instances when my regular PAs need time off. These dedicated and caring women make my active life possible.

Occasionally, I need to call upon my friends and family to help me manage gaps when a PA calls out sick or I can’t find a back up PA from my list of staff. Most of my friends who use home care dislike having to do this, even though we are eternally grateful for those in our circles of support who help us when we are in need. But none of us like being a burden. And even though my sisters and friends never make me feel as if I am a burden on them, I hate having to disrupt their busy lives so I can go pee. Or shower. Or get into bed. Or eat. Or get my laundry done. Or anything!

I have staff for that! I have used that explanation for years when people ask me how I “cope.”

Except – for most of the past three months, I have not had staff.

Since I returned from Australia at the end of March, my personal care schedule has taken a beating for many reasons. One Personal Assistant (PA) had to take early maternity leave due to complications with her pregnancy (she’s fine, and her new baby boy is also fine). Another had to have foot surgery. One PA had to take personal leave because of the unexpected death of her son. Another one moved. My primary weekend PA got a better paying job and gave her notice. My team was falling apart.

I started recruiting new staff back in mid-April, and began interviewing candidates in early May. I hired two women I thought would be good. I fired one when she called out on multiple occasions within a few hours of her shift. Then the other quit just as I was starting to feel comfortable with her.

I continued recruiting and interviewing, praying some good candidates would come my way before my friends and sisters became sick of me calling to ask for help. I did my best to maintain my regular schedule, thankful for an employer who understood my situation and granted me flexibility. I ran away to my sister Caroline’s house a few times because it was easier than trying to find coverage for holiday weekends. I had a wheelchair emergency. I used a glass of wine more nights than I should have to take the edge off my frustrations.

My regular staff (those still working) were patient, taking on as many extra shifts as they could given their other commitments. Thank goodness for Tina, who made sure I got out of bed every morning for work. I have always said the right morning PA makes all the difference in the world and Tina has been a blessing in my world for the past two years. No matter what happened the past three months, I never had to worry about whether or not I would be getting out of bed on a weekday morning. Unless you have had that particular stress in your life, I don’t know if I can adequately explain what it is like to wake up and not know how you will get to a toilet, much less get dressed and out the door. Sally came running whenever I called, even in the middle of her own family crisis. Sarah and Ronda filled in whenever they could as well, despite sometimes having health issues of their own.

People use the phrase “it takes a village” in relation to raising a child, meaning a communal effort is required. The same might be applied to my life. It takes a team of paid staff, caring friends and family, and kind neighbors to maintain my independent lifestyle in the community where I belong. Without the “village” I have curated over the years, I would not be able to function as I do.

How do I know this? I know this because when I did not have a complete team of PAs, this is what life looked like:

  • I did not socialize with friends in person. During the week, I went to work and then came home. I didn’t go out with friends. I tried not to schedule anything after 6:00 PM. I didn’t always know how or when I would be going to the bathroom and going to bed, so I had to be available whenever I could find someone to help me rather than at the time of my choosing. I am an extrovert and recharge by spending time with others. It has been a long four months, especially dealing with the blues after returning home from Australia and finding my apartment a mess.
  • I did not cook as much during the week, because I did not always have people to help me make dinner. So, I ate more prepackaged meals and frequented more restaurants. This is more expensive than cooking yourself, and not as healthy.
  • I did clean out my freezer! How long has that container of chili been in the freezer? I don’t know – but I’m hungry and I can put it in the microwave without assistance. Dinner!
  • I wore clothes from the back of my closet some days because laundry wasn’t done. Sometimes I found someone who was available to help me go to the bathroom but they couldn’t stay long enough to help me do laundry. I know the reason I am hesitant to get rid of clothing is because I remember the days (back when I was still able to do my own laundry) when it was easier to just go buy a new skirt and underwear rather than expend the energy to do laundry. Even though I’ve weeded out my clothes three times within the past year, I can still go for almost three weeks without needing to do laundry, never repeat an outfit, and still have clean underwear. Old habits die hard.
  • I did not volunteer or complete service projects with my Rotary Club. The Rotary motto is “Service Above Self” which is difficult, almost impossible, to put into practice when you are focused on keeping your “Self” functioning.

Maslow’s theory of the hierarchy of needs proposes if our basic needs for survival, such as physiological and safety needs, are not met, humans cannot reach self-actualization. While struggling to ensure coverage for my basic needs, I was content just maintaining employment so I could keep a roof over my head. Forget about self-actualization! Finding fulfillment and achieving my purpose (whatever that may be) were not even considerations. I was happy just to show up.

I am excited to report I have hired new PAs and for the first time in months, I have a complete team and feel as if I am back to living my life again – the way I want to live it, when I want to live it, how I want to live it. I have time to focus on goals and future projects. I am writing more and my writing is less negative. I even manage to crochet more days than not. I’m still not consistent on 15 minutes of crochet per day as I pledged, but I am getting better.

To everyone who listened to me whine and complain for months about the difficulty finding good staff, thank you for letting me vent. Friends and family who helped – your assistance quite literally made it possible for me to make it through the weeks with my physical health intact. I did not get sick, or develop injuries or skin breakdowns.

Home care is a basic need, just like shelter and food. Those who work as PAs or home health staff deserve credit for the crucial tasks they perform. I wish I could compensate my staff with higher wages, but because I rely on a publicly funded program (Medicaid) I have very little control over their salary. So, I continue to join others who educate legislators and advocate for increased reimbursement rates.

Sharing my experiences with others has made me realize the value in continuing to write about them on my blog.  I am not the only one reliant on these services. As long as I have a voice, and a platform (modest though it may be), I will continue to use it to inform others. If you live long enough, you or someone you know will need these services too. And you will be glad to have an ally who is not so afraid to tell it like it is.