Celebrating Acceptance

When we think of Valentine’s Day, we think of love. And this year, for me, there was that. But it was also a celebration of one of the principles that accompany love – acceptance. Allow me to elaborate:

Last year, my daughter began kindergarten at a new school. We found ourselves in a community of people where I was the only person, let alone parent, in a wheelchair. She and I both dealt with her peers’ questions. Some kids were curious in an innocent, friendly, compassionate manner while others would abruptly ask, “What’s wrong with you?” “Why doesn’t your mom walk?” “What’s wrong with her legs?” While my daughter and I are used to being stared at, pointed at and either answering or dodging questions while in public, this was her first experience dealing with all of this amid making new friends and find her place at her new school.

By the time Valentine’s Day rolled around last year, us parents were sending out sign-ups and emails for the party that was to take place in her classroom. I helped her pick out treats and cards for her friends. And then, one night during dinner, I mentioned being excited about coming to her party the following week. She glanced shyly at me and asked, “Would it be okay with you if you didn’t come?” I asked her why? She said it would embarrass her; that I was the only mom in a wheelchair and she just wanted to have fun. I was crestfallen yet I couldn’t show her how bad I hurt. I told her I understood and only wanted her to have a good time. I promised her I wouldn’t come. She thanked me. It was the first time she’d ever told me I embarrassed her or told me she didn’t want me to join in on something she was doing. While it hurt my heart so bad, I knew it wasn’t about me. I couldn’t let on how I felt because it would make her feel guilty. The day of the party, I sat out in the carpool line waiting for her festivities to be over so I could hear all about it. A fellow mother sent me some pictures since I ‘couldn’t be there.’ That was my undoing. I started sobbing. I wanted to be in there watching her smile and have fun. I cried harder as parents and kids began coming out of the school with bags full of treats and cards, smiling and talking a mile-a-minute. But by the time my little girl got in the car, I’d dried my tears and listened as she told me all the fun things they’d done and what she’d gotten from her friends.

So, fast forward to this past Valentine’s Day. The same planning began taking place leading up to the holiday. The parents signed up to volunteer time and items and I took my daughter shopping for her classmates. I assumed I wasn’t coming and so made no plans to do so. The night before Valentine’s Day, she asked me if I was coming. I asked her if she wanted me to and she responded, “Of course! I love you! You have to be there!” I was elated! I realized she’d come to a point where she no longer cared about how I functioned as a mom; she cared simply that I was her mom and she wants me to be present. Her friends and classmates have also become less shy and inquisitive as the year has progressed. I wonder if they’re realizing I’m just like their moms, except that I parent from 6 wheels instead of 2 legs. I feel accepted there, even by other parents who didn’t know quite how to interact with me at first.

The party this year was so much fun! And to be a part of it; to be wanted there, needed there felt divine! The teacher had taken the students out of the classroom so that me and a few other moms could set up the party. When the students began filing into their newly decorated room, my daughter spotted me, yelled “Mommy!” and ran into my arms. Our embrace was caught on camera by another parent and it embodies the love my daughter and I feel for each other. And, this year, along with that love has come major acceptance of our situation, of each other. Yet isn’t that what love is all about?

Valentine's pic

photo credit: Steve Slone

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School’s Inaccessibility Causes Bathroom Blunder

            It was meant to be a very special day at my daughter’s school. And, for the most part, it was. Her school recently had a day where the students were encouraged to invite friends and family members to watch a short concert and enjoy a reception afterwards. To my knowledge, I’m the only parent/caregiver in a power chair. I’ve always been impressed with the school’s accessibility. The floorplans are laid out where everything flows and if there’s a dip in levels, ramps are in place. There is also an elevator connecting the two floors. Until the day of the concert, I’d assumed the school was completely wheelchair accessible.

            I’m on a medication that acts as an extremely heavy diuretic in order to flush my body of its spinal fluid (my body no longer absorbs its spinal fluid so the danger is its ability to build up in/around the brain and spinal column). During the first song the children sang, I started feeling as though I needed to go to the bathroom. But didn’t want to make a scene leaving as I was sitting in front of the bleachers and would also have to get my Service Dog up and out with me. So, I sat there thinking I’d just make a quick getaway when I could. But each song led into another until I was hurting, I had to pee so bad! Finally, the principal dismissed the students and families and we all bled out into the hallway. I quickly went to a bathroom but upon opening the outer door, I realized I couldn’t even get my chair through. So, I backed into the hallway and headed towards another bathroom. This time, my chair got in, but there were no stalls big enough for me to use (not only needing to fit my power chair but also my Service Dog). I left that bathroom and saw some kids in the hallway. I asked them where there was a handicap bathroom and they pointed me in another direction. I got so excited until I realized the stall was long but not wide, meaning I’d drive up right in front of the toilet and need to spin around to use the bathroom – impossible.

            I grew increasingly uneasy, not just physically but mentally and emotionally. How hard was it to find an accessible bathroom? Why was this simple need so difficult to fulfill? I knew of one more bathroom I could try so quickly made my way there. And, there it was! A stall big enough for me and my Dog!! I pulled up beside the commode and shut the chair off, relieved to finally be able to use the bathroom! And then I reached for the transfer bar… that wasn’t there. My heart sunk; my face fell. I turned my chair back on and left the bathroom, tears forming in my eyes. In the 15-20 minutes I’d been searching for a place to pee, the other women who’d been lined up at different bathrooms were no longer there, having been able to easily satisfy a basic human function. I felt alone and inadequate, separate and different.

            I went to the main office and as I began explaining my dilemma to the secretary, I started sobbing. My pelvic area hurt; my pride hurt; my dignity was aching as well. She didn’t know what to do so she called the school nurse. The nurse came to the front office and tried to calm me down. I was told that she could help me use the bathroom but that was not the solution I was looking for. She told me she did this all the time when she worked in hospitals; I responded that I wasn’t in a hospital; I’m an adult mother who uses the restroom by myself and this was unacceptable to me. But there obviously was no other way for me to relieve myself so I went with the nurse down the hallway, passing students and their guests, towards the bathroom. I felt humiliated. It seemed like it was glaringly apparent to everyone who saw us enter that I’m incapable of using the bathroom unaided. That couldn’t be farther from the truth. It wasn’t that I had limitations in this area; the school did. But I wasn’t going to stop each person I passed to explain the situation; I simply swallowed my pride, my dignity, my capable self and let the nurse come into the bathroom with me.

            What ultimately had to happen for me to go the bathroom was the nurse not only helping me stand but her pulling down my pants and underwear while I held onto the top of the stall. She then had to pull my underwear and pants back up for me and help me back into the chair. To say I was mortified is putting it lightly. This should not have happened. There should have been transfer bars in the stall to allow me the dignity to use the bathroom privately just as every other student and adult did that day. My daughter and I are already different enough, and I was heartbroken that students had seen their nurse go into the bathroom with me – I didn’t want my having to pee end with negative consequences for my little girl. Kids can be cruel. Furthermore, the kids see their parents and adult friends in roles of authority, control and an all-around sense of what being a grown-up means. I want them to see me that way, too. Because it’s true – I am in a position of authority. And while we as adults don’t truly have control, it’s a natural assumption of a child to think that we do.

            Once I finished using the restroom, I had missed nearly the entire reception. I found my daughter and sat with her for about five minutes while she finished eating. She wanted to know where I had been and why I hadn’t joined her until that moment. I told her I had to use the restroom and she exclaimed how long it had taken me. I didn’t have the heart to tell her the nurse had to help me; she probably would have been confused as to why. She knows I can go to the bathroom by myself.

            I plan on meeting with the Dean of students. I intend to discuss this event with him and suggest necessary changes. I want this to be a moment of education for the school. This was not something that happened because I’m disabled. This happened because the school does not have the adequate and acceptable structures in place for someone like me. I may be their first disabled parent but I’m pretty sure I wont be their last. And I don’t want another parent to feel like I felt emotionally, mentally and physically that day. I don’t want them to miss out on an activity with their child because the school is not equipped for them.

 

Health-care Workers Skepticism Can Have Dire Consequences to Patients

I am writing this in hopes that others with rare disease(s) recognize the importance of speaking up; and health-care professionals of all types realize the importance of listening.

 

I found myself out of one of my medications and had no refills left. Out of the plethora of meds that I take, this is the one that keeps me alive – I have Idiopathic Intracranial Hypertension, a rare disease which affects only one percent of the world. For an unknown reason, my body stopped absorbing my spinal fluid, so it builds up in and around my brain and spinal column. Fortunately, I am one of the 50% of patients who respond to this medication, which was the only FDA-approved med in my state at the time of my diagnosis nearly ten years ago. I went into ‘remission’ after one year of taking the medicine. Remission is a commonly debated term among the IH patient community as well as with doctors and specialists. For my purposes, I use it to describe the ceasing of my IH symptoms and leveling of my spinal pressure while ON medicine. However, in 2015, my CSF (cerebral spinal fluid) levels began to rise again, causing decreased vision, headaches and pressure within my head. My dosage was increased but I’ve since lost some vision in my left eye and still deal with headaches and pressure at times. Without the medicine, my CSF would increase until I experienced blindness, seizures, stroke or death. So, the medicine literally keeps me alive!!

My pharmacy contacted my doctor’s office on a Friday about refilling the medication but got no response. The pharmacist was kind enough to give me an emergency supply to last until Monday morning. Rx supply When Monday came, I contacted the office twice through an online messaging system, imploring them to refill my prescription that day as I was out of the med. By the afternoon, my pharmacy still hadn’t received an order to fill so I called the office. The nurse asked what I needed, and I explained to her the urgency of having the prescription called in that day. When I mentioned what the medication was used for, she replied with sarcasm, “It drains your spinal fluid?” I said, “Yes, I have Idiopathic Intracranial Hypertension.” She said, “Huh, never heard of it. Well, I’ll send this to the doctor and tell him you say it’s urgent.” I got off the phone feeling hurt, frustrated and angry. Just because she’d never heard of my disease didn’t make it nonexistent! Her skepticism could endanger me! Sure enough, I called the pharmacy Monday evening to learn that they’d still not received an order.

So, Tuesday morning, I called the doctor’s office again in a near panic. I learned from the young lady who took my call that the nurse had not sent the message to my doctor but to his nurse and no action was taken! I again repeated how important it was that I begin taking this medication as soon as possible and why. I was told that she was marking it urgent and that if the pharmacy had not received an order within an hour, to call back and ask for her specifically. Low and behold, I was finally listened to! She listened and acted, and I had my medicine in a few hours!!

I thought about what would have happened had I not been assertive in advocating for myself. I thought about patients who may not know they have that right or feel confident enough to speak up. But, when people have rare diseases, there are medications we take that literally mean life or death for us. We matter! We’re important! We deserve to speak up for ourselves! We deserve to be listened to! We deserve to LIVE!

And, how about the health-care workers? The ones who aren’t knowledgeable about every rare disease? The ones who dismiss patients as hypochondriacs or dramatic instead of listening to them and taking them seriously? This kind of attitude can cause much harm in the life of a rare disease patient, not to mention their family.

So, if you have a rare disease like me, SPEAK UP! And if you work in the health-care system, LISTEN UP! Let’s start giving CARE to our RARE!