Accepting my New Disability – HoH

A few weeks ago, I went to an audiology appointment I’d been avoiding for over a year. Internally, I knew I could no longer hear as well as those around me. But my fear of learning this from a doctor kept me from facing the truth. Sure enough, I was told I have sensorineural hearing loss; hearing loss so severe, it’s usually seen only in those in their late 60’s (I just turned 39); and my hearing loss will worsen as times ticks on, necessitating repeated visits to an audiologist – yet another specialist to work into my already overloaded medical schedule! The good news, or so I was informed that day by the doctor, is that I need hearing aids which will allow me to hear typically once again.

But I did not see any of this as good news. It devastated me. I began to cry thinking about having to deal with another regression of my body. I sobbed realizing I will need one more medical device just to have a ‘normal’ day. Tears fell as I contemplated yet another thing that was “wrong” with my body; how “broken” I am; how tired I am with all the diagnoses, medical equipment, modifications, etc. Quite simply, I suddenly missed my old life – before age 28 when my body worked like nearly everyone else’s; where simple, daily tasks weren’t challenging; where intense planning didn’t go into having a simple dinner out with friends or going to school. I was glued to a pity pot and couldn’t seem to stand up and flush!

Two things happened that precipitated my turn around in attitude. The first was a comment the doctor made on my way out. As I wiped away the last of my tears and struggled to get my brave face on for those in the waiting room, he said, “You know, hearing aids are just like your glasses or your powerchair. You don’t realize you need them and may not even want them, but they’ll be life-changing and life-enhancing.” This statement planted a seed for me to ponder later.

Dis acceptance pic    The other thing to occur that helped me change my perspective was a post from a friend in the disability community. It was about accepting our disabilities and all that we gain from doing so. It finally clicked in me that everything was fine. I’m not “broken;” nothing’s “wrong” with me; I’m wonderful the way I am with my splints, powerchair, Service Dog and soon, my hearing aids. I recalled how I felt at the appointment when I was age 35 – I’d gone in to discuss a prescription for a new manual wheelchair, but my doctor had decided I needed to be realistic and get measured for a powerchair instead. I remember feeling devastated. I worried that I’d look like an elderly person in a powerchair (you know, because that’s the worst possible thing! Ha-ha!). I didn’t want the powerchair but when I finally got it delivered and rolled around in it, my eyes were open to how freeing it was. It’s given me more independence and the ability to better keep up with my young child. I’ve accepted that I need my chair to live in the best way possible and to obtain movement through the world in which I travel daily as an active member of my community. And, speaking of community, I’ll have a new community within the disability community to go to for support, encouragement, ideas, and more and perhaps someday I’ll be able to help another HoH (Hard of Hearing) person.

I messaged my friend, Lindsey, thanking her for her post and telling her about my appointment. It’s something I’ve still not shared publicly even though the shame and devastation are gone. Lindsey’s always encouraged me, supported me and quite frankly, as a fellow wheelchair user, she inspires me. She was Ms. Wheelchair Tennessee 2018 and I enjoyed following her journey. She runs a website and vlog on YouTube which I urge you to check out.

Being HoH isn’t the worst thing that can happen to me. I’ve certainly dealt with worse already. I accept my need for hearing aids and am looking forward to finding out what I’ve been missing all this time. Like my powerchair and Service Dog, hearing aids will open doors for me in the areas of independence, dignity, freedom and give me the ability to hear that my disability has robbed me of.

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The “Mommy Guilt” When You Have a Child With a Rare Disease

M holding thermometer         

          Emergencies in my baby girl’s life were something of a biweekly event. Starting at about two months of age, I rushed my daughter to the Children’s ER often for gastric issues. These episodes consisted of her not being able to keep formula/food down, refusing to eat and screaming in pain that could not be comforted. I was told to switch formula time and time again until she was nearly 7 months old, at which time it was suggested she may be lactose-intolerant and we began a soy-based formula. But even then, she continued to have issues with her digestive system. and didn’t hold solid foods well.

            My daughter is now seven and still has gastric/digestive problems. We’ve since learned she is NOT lactose-intolerant. In fact, last year, she was diagnosed with a rare connective tissue disorder called Ehlers-Danlos Syndrome and she has type 3, otherwise known as hypermobile Ehlers-Danlos Syndrome (hEDS). I’ve learned to stop rushing to the doctor or the hospital due to her headaches, sore throats and stomach pains. In some ways, her being diagnosed with a rare disease has relaxed me when it comes to her medical treatment. The more I learn about hEDS and figure out her unique set of symptoms and their severity, the less I tend to freak out about certain aches, pains and other things that used to panic me.

            Yet, recently, I learned another lesson: that having a child with a rare disease will keep me second-guessing my choices regarding her care; that I’ll feel guilty about my decisions surrounding her symptoms no matter what I decide; that I’ll think I’ve made the wrong choice for her no matter what.

            I came to this emotional revelation a few weeks ago when she began complaining of stomach pains again. I gave my pat response I’ve learned over the years and on a Sunday evening, we went through her bed time routine as usual even as she persisted that her stomach hurt. The next morning, after she was dressed for school, I happened to caress the side of her head and realized she was warm. Her temperature was only 100.3 but I called school to let them know she wouldn’t be there. She was still saying her stomach hurt but her tone had changed to one of intense pain and urgency. I called her doctor and they agreed to fit us in later that day. I gave her some Motrin and let her lay down. Less than an hour later, I went in to check on her and found her white as a sheet, teary eyed and burning up. Her temperature had risen to nearly 103.0 even after a dose of medicine. I called the doctor and they said to take her to the Children’s Hospital immediately.

            After several tests and an x-ray, I learned that she was severely impacted. I was given a prescription for laxatives to give her twice a day for a week and told to continue maintenance laxatives so this didn’t happen again. The two lead doctors said this could have been related to her hEDS but we can’t know for sure. I sat there waiting for our discharge papers feeling silly all over again. I’d thought she had appendicitis or a similar serious condition and here she was constipated, albeit significantly. When one of the doctors came back in, I told him I felt ridiculous and he said, “Having a sick child can make you doubt yourself. Don’t let it. You’ve done the right thing.” It was then that I realized I was still jumping to conclusions that were far more serious than the end diagnosis (and thank God for that!); I was beating myself up for not taking her stomach pain seriously enough, for not taking action the night before even though if I called the doctor over her every stomach ache, it would be a daily, unnecessary occurrence.

            Rare diseases are tricky enough. Having a child with one is an emotional entanglement of worry, self-doubt, guilt, fear and feelings of inadequacy. I’d rather rush to the hospital and find out it’s simply a symptom of her hEDS than not act on it at all. But I also can’t rush down there each time something comes up. I feel jerked around by her EDS at times, like it’s playing a game and I can’t win no matter how hard I try. There’s one thing I know for sure though: that my daughter is uniquely wonderful; that’s she’s strong, creative, funny, intelligent; that she’s loved; that she brightens my life and many others. Her having a rare disease is a tiny, miniscule part of who she is. But it makes up a huge part of my emotional focus as her mom.

 

 

Mindfulness In Chronic Illness

            Throughout my childhood and early adulthood, I never gave much thought to mindfulness. Even during my short foray into Soto Zen Buddhism in my late teens, staying present, being aware of my body, emotions and mentality didn’t seem like something I should give much import to.

            All that changed, however, at age 28. I was finishing my internship at a public school teaching a low-functioning, medically-fragile population of elementary students and working on my thesis for graduate school. Yet, suddenly, all that I’d planned for and worked towards became null and void. My whole life was turned completely around by the unforeseen onset of a rare neurological illness which left me physically disabled and visually impaired. It would take 1 ½ years for my eyesight to be completely restored and 3 years before I could walk again. I walked unaided for 15 months before my balance and mobility began to fail again. Since then, my prognosis is a slow regression of mobility though with no clear timeline. Since then, mindfulness has been forced upon me as a necessity and constant practice.

            I have been a single parent for all 7 years of my daughter’s life. Since her birth, I’ve progressed (or regressed, if you’d rather) from a cane to a manual wheelchair to a power chair. Recently, she and I were both diagnosed with another rare disease; a genetic disorder of our connective tissue. Any parent must take inventory of their physical ability to handle a given situation. Yet, as a parent with 2 chronic illnesses, I must maintain vigilant awareness of how much sleep I’ve gotten and whether or not it was sufficient; I must take stock of any aches and pains that are either currently beyond or have the ability to surpass my pain threshold; I must ask myself if I have the energy I need and how I might feel after the birthday party, field trip, visit to the park, etc. Will joining in be something my body will pay for later? Will it drain me of energy? Will it cause new aches or worsen current ones?

            It can be overwhelming trying to determine whether I can do something. I make mistakes often and must leave events early or I’m bedridden for a length of time afterwards. But I’m getting better at mindfulness. I’m learning more about my body. What’s surprising is that I’m not learning so much about my limitations as my capabilities. I’m stronger than I am weak. Mindfulness is a practice I think can strengthen us all, whether we’re disabled or not and whether we deal with chronic illness or acute ones.